Following Saturday’s PDA AGM, elections for the Board positions of TAS Director and VIC Director took place.

It is with great pleasure that we announce that Tim Harte (VIC Director) was re-elected to the position and also voted by the Executive to continue in his ancillary role of PDA Treasurer.

We also welcome Tammy Milne to the role of TAS Director and look forward to seeing both successful candidates’ continued commitments and successes in these roles over the next three years.

On Saturday 18th November, PDA held its 2023 Annual General Meeting, which was well attended and brought together our Board, Members and Ambassador, Dr Dinesh Palipana OAM.

Attendees heard from the PDA Team about the organisation’s efforts in 2023, plans moving into 2024 and beyond and together were part of the Physical Disability Australia conversation.

Dinesh also shared his thoughts around issues affecting the disability community and his hopes for positive reform.

Thank you to all our Members who attended, are an active part of the PDA community and who play an active role in PDA maintaining its place as an active and understanding supporter of Australians living with physical disability. 

If you’re not yet a PDA MEMBER and have an interest in making a positive contribution to Australia’s disability landscape, think about signing up for FREE MEMBERSHIP by going to

www.pda.org.au/membership/

We look forward to welcoming you to the PDA community.

We invite all our members to join us via Zoom.

3pm Sydney/Melbourne/Hobart/Canberra
2:30pm Adelaide
2pm Brisbane
1:30pm Darwin
12pm Perth

Hear what we’ve been up to in 2023, what our plans are moving forwards and to be part of the Physical Disability Australia conversation.

With updates from PDA Ambassador, Dr Dinesh Palipana OAM, and the PDA Team, our Annual General Meeting will be a great chance for Members to be an active part of the PDA community.

Wherever you are in Australia, you can attend via Zoom.

All you need is a phone, laptop, tablet or computer.

But you will need to register by going to:

https://us02web.zoom.us/meeting/register/tZAtcuGhqTgoGdIM26TRQrrr50MmX1PZ-4E9?os=ipad#/registration

After registering, you will receive a confirmation email containing information about joining the meeting.

Meeting documents will be circulated ahead of the AGM.

We really look forward to you joining us and saying “hi”.

Following ongoing and recent airline and airport incidents involving people living with disability, PDA last month circulated a Position Statement outlining the urgent need for airline and airport staff to undergo disability and inclusion training and listen to passengers with disability and their carers.

Following on from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability reporting on the requirement for a complete overhaul of the procedures for supporting people with disability travelling by air, it is imperative that accessibility and airport and airline practices are revised to provide inclusive air travel experiences for all air travellers.

To read more about our Position Statement go to:

https://www.pda.org.au/wp-content/uploads/2023/10/PDA-Position-Statement-Call-to-Airports-and-Airlines.pdf

Written by Paul Williamson- PDA ACT Associate Director

With all the discussion and focus on the National Disability Insurance Scheme (NDIS), it can be easy to overlook the fact that only a relatively small proportion of people living with disability are participants in the scheme.

Data from the Australian Bureau of Statistics shows that approximately 4.4 million people in Australia report living with a disability. The National Disability Insurance Scheme (NDIS) reports that 610,504 people are participants in the NDIS as at the end of June 2023. This represents only 13% of people living with disability in Australia.

So what supports are available for people with disability who are not scheme participants?

The answer will come as no surprise to many people with disability – relatively few. The Federal Minister for the NDIS, the Hon Bill Shorten MP, has even conceded this point, echoing the widespread view in the disability community that the NDIS is becoming ‘the only lifeboat in the ocean’.

It’s a big ocean

There are limited measures provided by the Commonwealth Government intended to address gaps in services for people not eligible to join the NDIS. The delivery of services for people with disability was largely the remit of state and territory governments prior to the introduction of the NDIS in 2013. It was envisaged that state and territory governments would continue to deliver services to people not eligible to join the NDIS after its introduction, however this is not what has happened in many cases.

States and territories still provide some funding, though many programs that were previously funded have transitioned into the NDIS, and what is left provides only limited support. 

In the ACT for example, the main publicly funded support for people not on the NDIS include the following:

• * Community Assistance & Temporary Supports (CATS) program which provides short-term support for people with a health issue, illness or injury. There is no age restriction, and eligibility criteria include (as well as living in the ACT):
  • * Be ready to leave hospital but unable to access the supports to help you return home safely through an existing program (such as the NDIS or Commonwealth aged care program).
  • * Have a health condition that is temporary or terminal, and not likely to get assistance through another program such as the NDIS or Commonwealth aged care program.

The program commenced on 1 October 2023, drawing several closing programs together, and has a modest annual budget of around $8 million dollars. I say modest as the program applies to all people, not just people with disability, and a large proportion of recipients are likely to be the elderly.

• * Integrated Service Response program which provides short-term co-ordination support for people with high or complex support needs, and funding to purchase emergency supports and services from non-government providers. Many recipients of support under the scheme are already NDIS participants. The program has an annual budget of approximately $1.1 million dollars.

The ACT Government concedes that it is a ‘program of last resort’.

• * The Disability Gateway provides links to information about services for people with disability in each state and territory. Many of these services however appear mostly to be available to people with NDIS funding or operate on a full fee for service model.

There is also some funding for advocacy services and things like concessions on utilities and transport vouchers.

Implications

For the majority of people living with disability, this means that they must fund their own supports – that, or rely on friends, family or volunteer services for assistance when required. Not an ideal situation for some of the most vulnerable people in the community who often struggle to find secure, stable employment.

It really shouldn’t be that surprising that we have seen a stampede of people seeking to join the NDIS – some even seeking access prospectively, just in case their condition deteriorates. It also explains the angst on the part of participants and the disability community any time the issue of scheme sustainability or eligibility is raised.

The NDIS was designed to operate on a 50:50 cost sharing arrangements between the Federal and state/territory governments, however due to the current capped nature of state and territory government contributions – the Federal Government is currently meeting around 70 per cent of the NDIS budget. By 2026-27, that figure is expected to reach 75 per cent.

At the end of June 2023, the value of plan budgets in the ACT was $702 million. Based on the original cost sharing arrangement, the ACT Government’s share of this would be $351 million. In 2022-23, the ACT is expected to contribute $189.9 million.

The progressive cost shifting to the Federal Government makes the spend on the part of the ACT Government (outside of its existing NDIS contribution) seem modest indeed.

Way forward

The National Disability Insurance Agency forecasts that the number of NDIS participants will reach $1 million within the next decade, and value of the program reach close to $100 billion annually.

There is a range of proposals being considered by the NDIS Independent Review to ensure funding for the NDIS is secured well into the future. Increasing the proportional increase in contributions by state and territory governments should be one of them.

Queenslanders with Disability Network is inviting those in the states/territories listed above to become Person-Centred Emergency Preparedness (P-CEP) Peer Leaders.

P-CEP Peer Leaders are people with disability helping to raise awareness with other people with disability about P-CEP.

The P-CEP is a framework and toolkit for people with disability to prepare for their safety and wellbeing in emergencies.

Co-designed by people with disability to prepare for their safety and wellbeing in emergencies, it draws on the research that informed person-centred and strengths-based approaches to making an emergency plan tailored to individual support needs in emergencies.

The program introduces you to the P-CEP Workbook and helps you to take steps to get ready for emergencies. Peer Leaders want to learn together about what people can do for themselves and what they may need support for in emergency situations.

Workshops will be run between October 2023 – February 2024. Join the workshop series in October. It is important to come to all 4 workshops in the series. Each workshop will go for 1 – 1.5 hours.

People who join the P-CEP Learning Community will receive payment to contribute to their time and expenses in taking part in learning.

For more information please go to https://qdn.org.au/our-work/disability-inclusive-disaster-risk-reduction/pcep-peer-leadership-program/ , contact QDN on 1300 363 783 or email the team at didrr@qdn.org.au.

Join us to hear what we’ve been up to in 2023, what our plans are moving forwards and to be part of the Physical Disability Australia conversation.

With updates from PDA Ambassador, Dr Dinesh Palipana OAM, and the PDA Team, our Annual General Meeting will be a great chance for Members to be an active part of the PDA community.

We hope that you join us and look forward to welcoming you.

Wherever you are in Australia, you can attend via Zoom.

All you need is a phone, laptop, tablet or computer.

But you will need to register by going to:

https://us02web.zoom.us/meeting/register/tZAtcuGhqTgoGdIM26TRQrrr50MmX1PZ-4E9?os=ipad#/registration

If you don’t have a Zoom account, signing up is free, quick and easy. Follow the prompts to create an account.

If you experience problems, please email us at promotion@pda.org.au or call 1800 PDA ORG (1800 732 674).

3pm Sydney/Melbourne/Hobart/Canberra

2:30pm Adelaide

2pm Brisbane

1:30pm Darwin

12pm Perth

After registering, you will receive a confirmation email containing information about joining the meeting.

Meeting documents will be circulated ahead of the AGM.

We really look forward to you joining us and saying “hi”.

Written by PDA’s QLD Associate Director, Sarah Styles

We are all familiar with the journey of learning to thrive through disability. This path normally involves years of searching for answers with many setbacks in finding the best management plan and supports. Then, dealing with organisations like NDIA brings challenges that can push us past our limits. It is after years of this I found my mental health at a low. 

Since my exercise physiologist is working well with me, I decided to enter a powerlifting competition. It would give me a healthy goal that involves other people in the form of other competitors and those that work with us. Turned out to be the best decision.

Benefit 1 – Starting bench press improved my body in an unexpected way!

As someone with hEDS my connective tissue is too stretchy and cannot support my body and organs the way they are designed to. As a result, my muscles need to be extra strong to support my joints instead. It’s also hard to stretch because I hyper-extend and get no benefits, even though my body is screaming out for it.  My body desires to move and get strong but more often than not I get injured doing simple things. 

Lying down on the bench press provides a decent stretch without injury throughout my whole body. Winning already! 

Benefit 2 – Mental Health

My mental health improved immediately as expected. Physically feeling better and stronger coupled with a goal to work towards really did the trick. 

Benefit 3 – Meeting people who are happy to work with me – no matter what that means! 

Powerlifting Australia informed me that the next competition was fast approaching, and they were happy to make adjustments to make it happen last minute. Not only that, but there is no segregation. Adjustments are made so everyone can compete together regardless of their physical ability. Which I really appreciated. This alone was uplifting and empowering. 

Competition day. 

The first thing I noticed was the family vibe. Feeling that, I knew everything would be fine.  Despite arriving an hour late to prevent health issues – I struggled – but they flew into action. I was informed of anything I didn’t know, such as doing weigh in, choosing what weight I’d lift for my 3 attempts, then warming up. 

It takes a lot of people to make a competition run. Everyone knew their job and functioned so well as a team you’d not know if there was a problem they had to solve. I ended up pressing my personal best – which was exciting – and leaving with a gold medal!

As a spectator you can’t help but cheer everyone on. I even witnessed a world record being made. I am definitely looking forward to the next competition and I’m thrilled to be counted with everyone else. 

Written by Tammy Milne – PDA TAS Associate Director

I am a white disabled woman living in Australia. My cohort is still the most marginalised and discriminated against minority group – people with disabilities suffer discrimination in Australia more than all the other minority groups put together. 44% of all complaints received by the Human Rights Commission are in regards to discrimination because of disability (AIWH, 2023).

I am a university student and as such come across a wide range of overseas students. 

My taxi driver from Lebanon on Friday night said that they had been a nurse in their home country, and that things are very different here for people with disabilities and so I am very lucky. Our country is getting a little better.

My support worker from India is a trained physiotherapist – but only in India. I asked her what it is like for people with disabilities in her home country. She answered “Good if you come from a rich family who can pay for everything, but it is not like it is here.” When I asked how things would be if you are not from a rich family. She sort of frowned and answered “it’s not good.  There are a lot of beggars in India who have disabilities. They beg for food – that is if they survive.” I asked “Do they die?” Her sad answer was “Yes”.

My Iranian friend at university has a cousin who uses a wheelchair. Her family is able to take care of her and her mother and family are very protective of her. She mentioned that access is very difficult in her country and the shops and streets make it very hard for her family to push her wheelchair. It is also a country where it is mandatory for women to wear a hijab. Very proudly my friend said her cousin asserts her dissidence by claiming she cannot wear it because of her disability. It seems that, at least to this point, she has been given some leniency.

My first holiday overseas was to Indonesia. I was 24 years old. Getting off the tour bus in a remote, small town square, I was rocked to my core. My naivety in my perceptions of what the lives of people with disabilities was like was rocked. I had assumed that everyone (wherever they were in the world), had a life like mine. I was so wrong. The bus was met by a small group of disabled people whose bone contractures (unlike mine) had not been surgically altered. They moved around on makeshift wooden skateboard type trolleys, sitting just a few centimetres off the ground. Prior to this, I had no idea what real poverty and deprivation looked like.

And so it is that I check my privilege. It is difficult to compare apples and oranges, a rich first world country and the countries outside of our “lucky country”.  I complain about the NDIS (National Disability Insurance Scheme) not being perfect and not meeting all my needs and the needs of others in Australia, but then I remember what I have been told and what I have seen.

In 2013 the Labor Government legislated a trial rollout of the NDIS to give people with disabilities choice and control over their lives – much like those whose disabilities saw them eligible for MAIB insurance. People with disabilities not covered under MAIB due to their being born with their disabilities, were then afforded a level playing field with the NDIS.

The scheme has now grown to be Australian wide. There is obviously still work to be done to make the scheme sustainable and efficient, to stamp out corruption from nefarious, unscrupulous entities and to give people with disabilities dignity. However, we are well on the way to this being achieved. We must also be ever vigilant in ensuring that the conditions offered to people with disabilities in Australia are the best that our country can provide.

I acknowledge my privilege to live in Australia and be a participant of the NDIS, but I will never forget that many living in other countries do not have such fortunate lives. It is but by a quirk of nature that I was born here, and they were born there! The divide between us is unfair!

Written by Robert Wise – PDA VIC Associate Director

This is the first of my series of blogs on assisted technology that has been funded by the NDIS to enable me to enjoy my freedom, to get out and about and, most importantly, to achieve my goals. 

For those who don’t know me, I am an above knee amputee with a type of amputation known as Hip disarticulation where part of the hip is also removed. I live in Melbourne, Victoria and am PDA’s Victorian Associate Director.  I always been passionate about exploring the outdoors and nature and  used to do a lot of hiking before my amputation. 

Today I am going to tell you about my Adaptive Trike known as a Jee-Trike supplied by Living Concepts Australia and funded by the NDIS. It is built from imported parts and assembled at Melrose Wheelchairs in Oakleigh, Victoria. It has been fully customised to suit me and my needs. You can view their range of equipment at https://melrosewheelchairs.com.au/. With my Jee-Trike I can now get back to my bush exploring, but from a different point of view. 

Image: My Jee-Trike

The Jee-Trike is known as an off-road, hand-powered cycle with an upright seating position and rear-wheel drive – which is a bonus as many other hand cycles are front-wheel drive which can be difficult to use with some forms of physical disabilities. It can be used by many people with different types of physical disabilities including those with quadriplegia. The Jee-Trike can be custom built to suit the user and can include options such as power assist to enable easier pedalling and brakes that can be operated by the elbow. Whilst the Jee-Trike is not suited to all physical disabilities, it can be adapted in several configurations.

There are many Hand Cycles available on the market. I chose the Jee-Trike as it was personally best suited and easy to modifiy for my needs. I have included a short video where I walk you through my custom-built option (please click on the link at the bottom of this blog to view). Special thanks to my support worker from Sonder Care Group for helping me film this video. Sonder Care Group is a support agency providing support workers to accompany you 1:1 (or other support ratios) and who make outdoor pursuits such as adventure camps, 4-wheel driving, mountain biking, snow and water activities and much more possible. With their help, choosing to attend events such as music festivals, cultural events and anything else that you might be interested in is in your control. Sonder Care Group will do their best to match you with the right support worker and the activities you like to do. Check them out at https://sondercaregroup.com.au/. It was with their help that I was able to visit and ride a section of the Great Southern Rail Trail in Gippsland Victoria – something I’d always wanted to do. We rode the section from Loch to Korumburra. I have included a slideshow of this ride at the end of this blog’s video. Most of the video was taken whilst on our most recent ride.

https://youtu.be/-z501xSH6g4

My support worker and I did the ride together and she had the right transport to carry the bikes.

Without the NDIS and assistance from my support worker, achieving these goals would not have been easy to achieve. I like to encourage people to get out there and explore your passions. With the right equipment, support and determination, your goals can be achieved. None of this would have been possible without the assisted technology and pushing myself. This may not be suited to everybody as each person’s needs are different. In a future blog, I will show you some of the other items that have made a huge difference to my life – including my everyday wheelchair. Watch this space.

I encourage you to subscribe to PDA’s YouTube channel whilst you’re checking out my video so that you don’t miss Part 2 of my blog and the many other exciting PDA videos in the pipeline.

Written by Tammy Milne – PDA TAS Associate Director

The social model of disability

I have lived with what others call a disability all my life. I have Arthrogrophosis Multiplex congentia which is not very well known, with many doctors even needing to google it to understand what it is. 

I use a wheelchair now, but for many years I walked around using a walking stick and long calipers (leg braces). However, the effort involved took its toll over time and I had to resign myself to the fact that I was now indeed a wheelchair user.

Things have changed dramatically for me. Whereas before I was able to open doors and even drag myself up a couple of steps, now I can’t because as we know wheelchairs can’t fly. Other things changed too. Where once I could go to a regular toilet (of which there are thousands, millions in the community), now I had to seek out accessible disability bathrooms (which are not as common). Even doing one of my favourite activities became a problem, op shopping! Do you know how many op shops are inaccessible? And don’t get me started about shops in general out there. Geesh! There is still a long way to go in the talks and provision of accessibility.

But even with challenges such as these, there are times where I can forget I have a disability. I am simply me and when things are going great, I forget. This is when the social model of disability is working perfectly. So what is the social model of disability you ask?

“The social model of disability seeks to redefine disability to refer to the restrictions caused by society when it does not give equitable social and structural support according to disabled peoples’ structural needs.“   (Pam Thompson et al 2012)

So basically, this explains why I forget I’m disabled at times. If I can smoothly traverse my day with no manmade obstacles to stop me, then I am not disabled. If I can get to a toilet, if I can go to the shops I want, if I can just go about my business like everyone else, then am I disabled?

It’s only when access is denied by obstruction that I become frustrated and rail at the unfairness of it, not just for me but for everyone like me.

Yesterday I got a takeaway coffee and googled the nearest fenced dog park. My doggies, my support worker and I were going for an adventure and some much needed outside time on this barmy (for Tasmania), sunny 17 degree day.

We arrived at a beautiful tree lined park with thick green grass and doggos everywhere bouncing around after balls and socialising with each other as their people socialised with the other humans. We parked the car between the trees to get close enough so that I didn’t have to traverse much of the rough gravely dirt to get to the gate, but then we saw the gate. There was a small step. Even though it was small, as I said before wheelchairs don’t fly. I could not enter. I was frustrated! I sat in the car and watched through the window as my doggos enjoyed the park. I could not join them. These are the times I feel disabled! These are the times when society has built infrastructure that excludes me.

Not being a shy flower, I instantly rang the council to point out this discrimination. The response I got was “gee that park’s been there for years, no one has said anything before this.”

I responded with well something needs to be done now.

The reason why no one has complained about the access issues in the past could be attributed to a number of reasons; the emotional labour it takes a person with disability to constantly ask for solutions to barriers takes its toll and there is only so much we as individuals can speak up about. Another reason, people with disabilities simply don’t know their rights – under anti discrimination legislation, access is not to be denied to PWD. It is your right to enter just like everyone else. The last reason could be a council issue. For all the access and inclusion committees put in place by councils these days, the work simply isn’t filtering down to the ground, like the actual bricks and mortar of the council area. Policy is one thing, but action is another.

The takeaway from this story is that we need to be striving to make sure access is not denied. The social model of disability is a reality, disability is a construct. That is, our environment makes us more disabled than others simply by the way things are built around us. I want to continue to live my life day to day forgetting I have a disability. For this to happen at the moment, a lot of people like me need to speak up about the issues and constraints in their communities, such as access to my local dog park. We should not be denied.

The PDA Team loves to share information, disability stories and personal experiences on our website’s blog page and to ignite discussions and encourage the sharing of ideas and opinions on our socials.

Seeing these interactions and reading comments from everyone also helps us to gauge what’s important and where we need to focus our attention as an organisation representing Australia’s disability community.

Being recognised for doing this is an added bonus and has us walking, wheeling and hopping around with the biggest smiles on our faces.

So we’d like to thank Home Caring and Vital Home Health Services for naming Physical Disability Australia in their recent “8 disability blogs you must read” and “8 Disability Blogs To Lift Your Spirits” lists.

We really appreciate this honour and recognition and look forward to continuing to bring you stories of interest and importance.

❤️ Team PDA

As the NDIS National Disability Insurance Scheme celebrates 10 years, a review by an independent commission is looking at ways to ensure that it works well for all participants.

Through the help of its participants, the Scheme’s problems and successes will be pulled together and potential solutions identified.

The Australian Federation Of Disability Organisations (AFDO) is made up of member organisations, including Physical Disability Australia, who together work to uphold and address issues impacting the lives of people with disability in Australia.

As part of the NDIS Review, AFDO is making a submission to the the independent commission on behalf of people with disability. To do this we need your feedback and ideas around improving the NDIS to ensure that the voices of its participants are at the heart of any reform.

If you’re an NDIS participant and would like to have an anonymous say in making this happen, we invite you to take part in a survey where you can share your experiences around accessing the Scheme and how you feel about your plan.

AFDO respects your privacy and all answers will be de-identified and private. Information supplied is protected by AFDO’s Privacy Policy (https://www.afdo.org.au/our-work/privacy-policy/).

The survey closes on Friday 14th July and can be accessed by going to:

https://us10.list-manage.com/survey?u=a56e874cd0bbf97085d908efa&id=cf6e40f44f&mc_cid=bfa49c44d6&mc_eid=3f8e5209b0&e=3f8e5209b0

Thanks for your time. Together we can play a role in making the NDIS the best it can be.

If you missed seeing the ABC TV’s piece on the 10th birthday of the NDIS, we encourage you to check it out.

It’s an interesting look at the life of the NDIS, with some wonderful insights from those involved in its management and those accessing the system – including PDA’s SA Associate Director, Krystal Matthews, who comes in at approximately 26:56 minutes.

“Nas Campanella looks at the successes and failures of the NDIS. We hear from those with lived experience of the scheme, plus Chair of the National Disabilities Insurance Agency Kurt Fearnley and NDIS Minister Bill Shorten.”

https://iview.abc.net.au/show/ndis-10-years/video/NS2338H001S00

Shared by Tim Marks, PDA TAS Director

Tim Marks (PDA TAS Director) shares this video of his new leg being fitted.

It is a c leg computerised prosthetic leg with a flex foot. The socket is a varios socket which, at the time of recording, had only been out 8 months.

After 13 years as a wheelchair user, Tim is finally learning to walk again.

Written by PDA President, Andrew Fairbairn

On Thursday 01 June I attended the Assistive Technology Suppliers Australia (ATSA) Independent Living Expo at the Perth Showgrounds. 

I went to check out what is new and upcoming in the AT world. To be very honest, I have been to many of these in the past and so was not really expecting anything to take my breath away. Well, I was very wrong.

There were well over 100 suppliers. Everything from all types of wheelchairs and wheeled mobility devices to bedding, beds and lift chairs for the lounge to modified accessible vehicles, to the latest in devices for vision impaired people.

I want to highlight 3 products that really blew my mind. 

#1. A remote-controlled wheelchair. I was wandering through the exhibits and this empty attendant wheelchair came towards me. It was surreal to see this, so I followed it to the stall to have a chat with the operator. She explained that it was designed for a user who needed to move the chair independently once they had transferred from the chair to a bed for example. It can be easily operated by a support worker or by the person with a disability.

#2. In the physical disability world, we know that on the whole wheelchairs haven’t really changed much in the past years. I came across Rove, an engineering company based in Melbourne, who are doing some game changing work in the build, and weight, of custom wheelchairs. They are building them with 3D printed Titanium, so they are super lightweight and extremely strong. As they are custom made, the final chair is completely custom fitted to the user and as they say, “millimetre perfect”.  I was passed a very big frame and it weighed no more than my prosthetic leg. Incredible.

#3. Mobility scooters are great, except when you forget to charge the battery. Well, there is now a solution. A solar powered scooter. This scooter has 2 onboard batteries which are on constant trickle charge as the scooter is being used out and about. It has 3 solar panels on it which are flexible. It can also be plugged into mains power.

I would encourage all members to go to the ATSA Expo in your area. It not only is a great opportunity to see, touch, hold and explore new AT, but also to network, meet new people and catch up with old friends. 

It was great to spend some time with my WA Associate Director, Melanie, and get some photos together.

Please check out the link below to see a short video of the remote-controlled wheelchair:

Written by PDA WA Associate Director Melanie Hawkes

There’s nothing worse than being cold! I find it really difficult to warm up. I take at least 20 minutes to get dry and dressed after a shower and can’t wear thick jackets or extra layers as it affects my arm movements. I still need to be capable of driving my wheelchair and feeding myself on cold days. My hands and feet are like ice blocks most days. It makes me miserable, and I can’t sleep if I’m too cold. Nobody likes grumpy Mel, so here are my top tips for surviving winter:

#1 Heated throw rug – I got one last year from a friend, and I love it! I have it plugged into a smart Wi-Fi plug and use my voice to turn it on and off through my Google assistant. So handy when I go to bed freezing, or wake up shivering during the night. The smart plug app has built in timers, so I can set it to switch itself off. It usually only takes 15 minutes, so I warm up quickly. I wish I could hide under it all day!

#2 Bake – find any excuse to put the oven on! My favourite thing is to roast pumpkin. I take my time turning each piece over, enjoying the warmth on my face and hands. And always leave the oven open when you turn it off. It’s a great way to warm the house. Just be careful not to burn yourself.

#3 A warm bath – I love my bath! I have it as hot as I can tolerate. I got TADWA to make me a comfortable bath seat, and I have a wooden table for my magazine and a drink. And bath bombs are the best. The longest bath I’ve had was three hours, and yes, I had to add a kettle of boiling water after two hours as I started to get cold.

#4 Find the sun – my house was designed to maximise the winter sun. I go from window to window as the sun moves throughout the day.

#5 Hand warmers – I have an electric hand warmer that warms up to approximately 50°C, but I really like the Hot Hands hand warmers too. It is a lot lighter, they always come in sets of two, but unfortunately they aren’t reusable. Most chemists sell these, and they’re the only way my hands don’t freeze at the footy.

#6 Hairdryer – I always have cold hands while using my computer. So I put my hairdryer on my desk! I have it plugged into a wifi plug so I can turn it on and off with my phone. And it blows hot air right onto my hands! Great for when my support workers have freezing cold hands and they have to undress me. The only downside is it’s loud, so can’t use it during zoom meetings.

#7 Heated socks – yes they exist. I bought mine from Amazon. Mine have a pocket for the rechargeable battery to sit in while wearing. It has a remote control too! On the lowest setting the batteries last all day, and my feet are no longer purple ice blocks.

#8 Mulled wine – when all the above fails, mulled wine it is for me. I found Zenzen Gluhmein, a German Christmas wine, at Dan Murphys. A small amount in a mug in the microwave for a minute and I get toasty warm.

Good luck with keeping warm this winter!

Written by PDA TAS Associate Director, Tammy Milne

***TRIGGER WARNING – LOSS AND GRIEF***

***SPOILER ALERT – “Guardians of the Galaxy 3”***

Today I went to a movie and I cried almost all the way through. This wasn’t some mushy romcom or chick flick. This was an action sci-fi film. It was “Guardians of The Galaxy 3”.

Why did I cry so much? I am a woman with a disability and the character Rocket brought out in me some deep-seated emotions around disability that just could not be held in. They burst forward and I was a blubbering mess for most of the film.

Rocket, like me, received many painful operations throughout his young life. These enhancements for both of us came at the cost of pain – real bone grating, breaking, aching pain. Seeing Rocket suffer triggered that empathy dam that burst its banks, allowing tears to roll forth in torrents. I know your pain Rocket!

The friends Rocket made in his cage caused all kinds of grief for me as well. This little creature was loved by his group of also tortured friends, with their shared pain and suffering creating a bond where together they endured and made the best of their sorry lives. When they were killed, that was it!  I totally lost it. Rocket’s feelings of abandonment, pain and anger were so real and I felt that they were happening to me. Another creature misplaced in the universe. 

As I write this, it’s 12 days ahead of the anniversary of Phil’s Death (my husband and partner of 33 years) and maybe this was the trigger that I needed to grieve again. It seems that loss is never finally over. When Rocket almost died, was reunited in the great hereafter and was told “we missed you, you can stay, but not yet as your time has not come”, again my tears rolled liked rushing snotty rivers down my face, with big ugly sobs to go with it.

Is death just the beginning? Will we be reunited with the ones we love? I hope so! And you know what?  In the hereafter the movie characters still had their callipers and wheels, because they are part of what we/they are. We don’t have to change and be cured to accepted in the great beyond! We are what we are!  LOVED!

I was not alone in my grief at this movie. My daughter beside me was just as stricken. We held hands and sobbed our way through the movie. Others probably thought we were an odd pair – the young woman and the older woman on a scooter crying uncontrollably at what is essential a children’s movie. We shared our grief together, separately, individual, but together in our journey of grief.

When the Guardian rescued the inhabitants of the factory of misery, and all the higher order creatures, the sobbing began again in earnest because creatures like Rocket were not included. Rocket would not leave them and the baby rockets were scooped up and hauled on his back to be carried through the fire and destruction and saved. Rocket risked his life to save them because in his eyes they were worth saving. They were his family. They were like him and worth life. 

They had value. Wow, did that bring up deep seeded feelings of unworthiness that have personally followed me through life because of my disability. But I too am worthy and I applauded Rocket for his bravery in saving them. Who decides who is of value? Who decides who is worthy? Who decides who lives or dies? We judge a society on how it treats its most vulnerable. 

I see myself in Rocket. and what I saw made me cry uncontrollably and think I would never leave this grief behind. It is now 5 hours later and I just had to write about this, to share how for me life imitates art. For me grief is still with me and like Rocket I will fight on. I will put my tears away, bolster my courage and, just like Rocket, live because I am worthy!

Mark Pietsch is PDA’s NSW Director and yesterday he was interviewed on ABC Illawarra radio’s Breakfast Show hosted by Melinda James about the NDIS National Disability Insurance Scheme.

His segment is at 1:58:48.

Check it out. Mark has some great points and suggestions.

https://www.abc.net.au/illawarra/programs/breakfast/illawarra-breakfast/102270486

Written by Melanie Hawkes – PDA WA Associate Director

As a woman with a physical disability since the age of two, I never thought I was worthy of a man’s desires, or capable of fun times in the bedroom. With high needs in daily personal care tasks like toileting, dressing and showering, sexual matters never crossed my mind. What kind of man would choose me over an able-bodied person? They would be crazy to take on someone with additional needs. 

Then in December I got Covid-19. I actually thought it would kill me, as I only have about 20% lung capacity. This is because I have a severe scoliosis and reduced muscle strength to cough. A simple chest infection can mean a hospital stay. 

Two days before testing positive, I found out I was eligible for antiviral medication. So I was able to get them which meant that my symptoms were mild and only lasted three days. But it was during my isolation that I had a surprising conversation with one my support workers that changed my life. She told me about disability sex workers.  I’d never heard of them, and didn’t even know it was legal here in WA. 

In January 2023, at the age of 43, I had my first session with a male escort called Chayse. It was the first time I had been naked in front of a man, outside a hospital. A nerve-wracking experience, but Chayse made me feel comfortable and relaxed as he gave me an erotic massage at his place. 

I felt out of my depths in terms of sexual knowledge, and didn’t even know that women masturbate (I thought it was something only men did). But what I didn’t know about sex, Chayse didn’t know about disability. We had a lot we could teach each other. 

Unfortunately I didn’t get a ‘happy ending’ during the massage, but it wasn’t through lack of effort by Chayse. I booked him again for a second session, two weeks after the first. This time he came to my house. 

I was more relaxed than the first session and I had paid for a mix of massage and escort. I had emailed him my list of fantasies: things I wanted to experience with a man. Top of my list was kissing, as I had never been kissed before and had no idea how to. Chayse was a good teacher and he didn’t disappoint. The three hours together flew by. I’ve seen him five more times since. 

What I love most about Chayse is the way he makes me feel. He sees me as a woman first, with the same wants, needs and desires as any other woman. My disability becomes irrelevant. Sure we need to do some things differently, but it isn’t a barrier to accessing physical touch or intimacy or pleasure. 

It is also a very safe way to explore sexual matters. By paying for the service, I have felt in control. If Chayse did something I didn’t like or made me feel uncomfortable, I trusted him to stop. I am immobile when in bed. It’s not like I can get up and walk away; a vulnerable situation to get myself into. But by paying a professional (a ‘sexpert’ as he calls himself), I maintain control. It is in Chayse’s best interest to do the right thing and satisfy his customers, or I won’t book him again. It’s no different to seeing an OT for equipment advice or a physio for aches and pains. 

Chayse is very body positive and I have learnt from him that every body is beautiful, even mine. It was just after our second session that I got more comfortable telling people about him. I actually wanted to tell the whole world what an amazing service it is, how it has given me a new sense of worth, increased my confidence and made me feel amazing. But I was scared of people’s reactions. 

The more people I told, the more positive reactions I received. They were really happy for me, and could see it made me happy. So I emailed the Deputy Editor at Take 5 magazine with my story idea about using escorts. 

She loved the idea straight away. But I had to decide whether I wanted to reveal my identity, change my name or show my face in photos. 

It wasn’t an easy decision, but again I had the support of family, friends, and of course Chayse. The key message I wanted to convey through the story is sexual health is a basic human right, according to the World Health Organisation. Just because I have a physical disability doesn’t mean I don’t deserve intimacy and pleasure. I’m not ashamed of wanting it for myself, only that I didn’t start many years ago. 

I’m speaking out and sharing my story now in the hope that others with disabilities realise they too can have it. The hours I’ve spent with Chayse have been some of my happiest. We’ve slow danced, had baths together, slept together, been swinging, I even rode in his V8 ute! I’ve bought lingerie and toys for the first time in my life. It has opened up a whole new world for me that I never thought I belonged to. These are opportunities I’d never thought possible, and I want other people to have their own fantasies realised.

I self-funded the first four sessions, and claimed the last three on NDIS. Check with your LAC to see if you can too. I self manage my funds, but believe the NDIS should see escorts as an essential service and fund it adequately. Relationships are tricky enough for able-bodied people. For some people with disabilities, escorts are the only way we can have a safe, positive sexual experience. Why deny someone that because of cost? It’s an activity those without disabilities take for granted.

I must thank those who have spoken out before me, who gave me the confidence to do the same. Amy Calladine wrote about her experience on MamaMia, Hannah Diviney spoke about acting on The Latecomers on the ListenAble podcast, and TV shows like The Swiping Game and Better Date Than Never have made talking about sex more mainstream and acceptable.

So what’s in store for me in the future? I have been blown away by the response of my Take 5 story since it was shared on news.com.au. I’ve had messages from journalists from as far away as Norway and the UK asking to interview me. And I’ve loved all the comments on Facebook and messages from strangers thanking me for my story. It’s obviously an important topic that not many are happy to discuss. I wasn’t prepared for my personal story to be popular worldwide, and I haven’t decided if I want it to be world news! 

For now, Chayse has given me the skills, knowledge and confidence to put myself out there. He is helping me to navigate the field of online dating as a pathway to meeting a potential partner. 

But if I have no luck, I’ll be asking the NDIS for a bigger budget next year. 

Krystal Matthews is PDA’s SA Associate Director and an incredible disability advocate with strong professional experience and personal interest in disability accommodation and homelessness resolution.

On Monday 24th April at 6pm AEST, Krystal will be part of our next webinar “My Home, My Life”, which will be around housing options for people with disability, home modifications, building an accessible home and what home and support options are possible with the NDIS.

You can hear Krystal talk about the upcoming webinar by going to:

https://www.linkedin.com/feed/update/urn:li:activity:7048512519346257920

This webinar is a must attend for anyone wanting to learn more about housing options and how to get a foot in the door of accommodation that is accessible, suitable and a place to call home.

Our four presenters will provide you with a solid understanding around the different types of disability housing, eligibility for NDIS funding, accessing support, current and upcoming legislation and accessibility modifications.

Run via Zoom, this FREE WEBINAR is available to everyone. You don’t have to be a PDA Member, but you can also SIGN UP FOR FREE PDA MEMBERSHIP by going to www.pda.org.au/membership/ .

To register for this “don’t miss” opportunity go to:

https://us02web.zoom.us/webinar/register/WN_GAvRAhkqTP-keg0_j6a-dA

We hope to see you there.

Physical Disability Australia (PDA) exists through the dedication, hard work, loyalty and commitment of its staff, board and members to support our country’s disability community.

Our most valuable contributors are often the ones who work in the background. Trish Johnson is one of these incredible individuals who has been Finance Officer here at PDA for 12 incredible years, helping behind the scenes to ensure that things run smoothly and successfully.

Trish, we are so grateful for your involvement and efforts and so proud to have you on board as a colleague and friend.

With many water sports adapted to be more inclusive and more and more opportunities becoming available to try these fun activities, maybe one of these options will whet (or “wet” 🤣) your interest.

Fishing

• For any regular anglers or people eager to give fishing a try, a number of not-for-profit organisations throughout Australia offer recreational opportunities for people with disability to pick up a fishing line and join fishing trips on shorelines, jetties and boats in rivers, oceans and estuaries. Supported by trained volunteers and using modified equipment, interested people can experience the joy of fishing:
  Fishability is based in WA – https://fishability.org.au
  FishAbility by Fishcare Victoria – https://www.vrfish.com.au/get-involved/fishability/
  Fishability QLD – https://fishability.com.au
  Fishing for the Disabled in SA – https://ioofsa.org.au/community.htm
  Fishing For Therapy – Sydney, NSW – https://www.ansansw.com.au

Sailing

• Disability inclusive sailing clubs operate throughout Australia with many making sailing accessible to everyone. Sailability is run by volunteers in every Australian state, working jointly with local sailing clubs to offer opportunities to sailors of all abilities. (https://discoversailing.org.au/sailability/)

Surfing

• The Disabled Surfers Association of Australia runs all-inclusive surfing programs to people with disabilities throughout Australia. Run by volunteers, this organisation brings the joy of surfing to anyone wanting to ride the waves. (https://www.disabledsurfers.org)

Canoeing and kayaking

• Canoeing and kayaking are a great water sport that can be adapted and enjoyed by people of all abilities. It’s also a wonderful way to experience the water – whether for fun or competitive sport. The recent addition of para-canoe to the Paralympics has encouraged a surge in popularity for those who want to take a lazy paddle to the next level. Whatever your interest level, there are clubs throughout Australia running accessible programs. (https://www.sports.org.au/canoe-kayak)

Scuba Diving

• Disabled Divers International is a not-for-profit organisation providing disabled scuba diving internationally through dive schools. Running a number of programs DDI strives to make diving more accessible for people with disabilities. (https://www.ddivers.org)

Water Skiing

• A number of disability-inclusive water skiing options are available in Australia, offering fun opportunities to PWD with a range of physical and visual impairments to give adaptive water skiing a go. Disabled Water Ski Australia can get you started. (https://disabledwaterski.com.au)

Water (Aqua) Aerobics

• These fun classes can be adapted to a wide range of disabilities, with the water working to reduce the impact of mobility limitations. Many pools and aquatic centres throughout Australia offer programs for people with disabilities to enjoy this fun fitness option.

Swimming

• Swimming is a great way to maintain fitness, build muscle strength and target core stability. Water buoyancy also helps with movement and it is easily adaptable. Many local pools and aquatic centres provide programs, warmer pools and equipment options for people with disabilities.

Kite-Surfing

• For the Adrenalin junkies amongst you, kite-surfing has seen great advances in becoming an accessible sport for people with disabilities. Modified seating equipment, tandem harnesses and wheelchair land-based trainer kites help to bring this sport to many Australians living with disability. Not yet readily available, you may have to do some research locally. (https://www.ikointl.com/blog/kitesurfing-people-disabilities)

For those of you simply wanting to enjoy the beach, Accessible Beaches provides an incredibly useful and welcome way to locate your nearest accessible beaches. Covering information such as mobimats (beach matting), beach wheelchairs, disabled parking, accessible changing rooms/toilets, ramps, pathways and direct beach access. (https://accessiblebeaches.com)

Whatever your jam is on or in the water, there are some fun sport and recreation options and some great opportunities to get your feet wet and try them out.

Enjoy!

“My Home, My Life”

We’re excited to be running our next webinar around housing options for people with disability, home modifications, building an accessible home and what home and support options are possible with the NDIS.

Monday 24th April at 6pm AEST

This webinar is a must attend for anyone wanting to learn more about housing options and how to get a foot in the door of accommodation that is accessible, suitable and a place to call home.

Our four presenters will provide you with a solid understanding around the different types of disability housing, eligibility for NDIS funding, accessing support, current and upcoming legislation and accessibility modifications.

Run via Zoom, this FREE WEBINAR is available to everyone. You don’t have to be a PDA Member, but you can also SIGN UP FOR FREE PDA MEMBERSHIP by going to www.pda.org.au/membership/ .

To register for this “don’t miss” opportunity go to:

https://us02web.zoom.us/webinar/register/WN_GAvRAhkqTP-keg0_j6a-dA

We hope to see you there.

Written by Tammy Milne – PDA’s TAS Associate Director

Today I caught a bus. So what’s so unusual about that you ask, when millions of people all around the world do it everyday! 

What makes it unusual is that I was able to catch a bus because the infrastructure, the bus and the bus stop were accessible to me and my wheelchair.

I was able to catch a bus, go out for dinner and on to see a movie. That is freedom, that is choice and that is control! I am the master of my environment in this small way in this instance, when all the stars align or more pointedly when government, bus companies and councils work together to make sure that transport is accessible to everyone.

This occasion was anomalous, not the ordinary and certainly not something to be taken for granted. There are thousands or at least hundreds of variables that stand in the way of this being an ordinary, everyday occurrence for all people with disabilities.

The Bus Stops. Their placement geographically is a variable that cannot be ignored. If the bus stop is on a steep gradient on a street then the bus ramp is inoperable and/or dangerous to use. This stops people with disabilities using the bus. 

But I have seen wondrous engineering skills implemented to ‘fix’ this situation. Bus stops with elevated and flattened boarding points on the street. So really the only impediment to all Bus Stops being accessible is funding and skilled engineering.

The Bus. As yet we still do not have 100% accessible transport in this country. In some areas it’s close, but even 1% or 5% of inaccessible buses can mean someone is left on the side of a road because they can’t get on. They are unable to access their community and their lives are not the same as those who can easily hop on that bus.

The Other Passengers. Those seats with the little wheelchair sign are dedicated for PWD, not crabby teenagers, or lazy people who like the first seat they can find. The other day I was on a bus and a young man was busily playing on his phone as I tried to manoeuvre into the wheelchair section of the bus. He occupied one section, sprawled on his seat. He either didn’t notice the amount of times I had to reverse and go forward, reverse and go forward and still be unable to get into the space or he didn’t really understand that he was impeding my access. I gave him the benefit of the doubt. Maybe he had a disability. However, when his stop came and he bounced off the bus I was crabby. 

So, young man on the 501 to North Hobart, check your privilege and also (unlike toilet seats where you put them down after using as a courtesy) return the bloody bus seat to an upright position. Have you ever tried to lift those seats up from your wheelchair? Often all six of them? It’s hard and can’t be done without assistance. So people please make sure those seats are put back up again. In Melbourne I have noticed that the seat automatically returns to the upright position once the person leaves their seat. Food for thought Transport Tasmania? 

The wheelchair. It has become a ‘thing’ where well meaning professionals prescribe wheelchairs that are great at home, at the theatre in many other situations – but they are large, heavy and are not suited to travelling on a bus. So whilst they may well be extremely comfortable to sit in at the theatre, the act of getting to the theatre may be another story. If it’s too big for a bus, or if I don’t have transport of my own (such as a custom car or van), then is it really fit for purpose? Is my life really better off with it? 

So it seems a missing piece in the consideration of our transport needs lies in whether our wheelchairs are actually fit for purpose and able to be used and transported. This is an issue for professionals, manufacturers and PWD themselves to advocate for more innovation in this space. We want wheelchairs that are fit for purpose and that easily allow us to access our communities. Make them lighter, more comfortable, more durable and suitable to use on public transport. There should be NO compromises. You should not have to give up catching a bus because your new $20,000 wheelchair is not fit for purpose and possibly requires you to access an additional $75,000 because you need a purpose-built van to carry it and this van requires an additional person to drive it – further diminishing your independence and adding to your cost of living. 

As you see the price of freedom has many and varying costs, but none are insurmountable with greater thought, planning and engineering solutions. I want to continue to travel with my trusty, Green Card for all zone cost of $1.92. I want to save the environment by not using a car. I want to stop congestion by not taking up road space. I want to free up parking in the CBD and I don’t want to have to pay for it either. 

I want my freedom at all costs.

Written by Sarah Styles – PDA’s QLD Associate Director

How many times do we encounter people who view those different to them through a narrow view? Assumptions are made and perceptions born coloured by their interpretation of their own life’s experiences. Simply put, they see others subjectively.

It is most useful to learn how to view others objectively. That is, we are not influenced by personal feelings or opinions in considering and representing facts. It can be confronting and quite difficult to accept and to believe truths coming from very different realities to our own, but it is possible.

One situation the disabled community talk about a lot is around able bodied people asking inappropriate questions. The most common questions resemble “What happened to you?” The  common response to this question is that it’s no ones business. Often this is because the answer involves private medical information. Information no one else is asked to divulge – especially to quell a stranger’s curiosity. Another reason this question is frowned upon is because living with a disability is all encompassing. Everyday activities like eating are not straight forward. Much planning is required. Since so much time is already given to these tasks, it’s the last thing we want to think about while we are working or enjoying the moment. The third important reason is that we may not be in an emotional place to talk about it. Our limits can be quite narrow some days. We may require every bit of mental focus for our task or simply trying to sit up can drain our energy quickly. And the fourth reason is due to trauma. We have often been ignored, ghosted, not believed or even abused for years. This takes a toll. Many of us have medical PTSD. Many have families who don’t believe them which adds to the impact. They don’t want to be reminded of that trauma nor relive it. 

I think it’s important to discuss these trauma responses. Too often they are misinterpreted as anger or rudeness and understandably so. It is possible to tell the difference between a rude or entitled person and a trauma response for those who have been exposed to both. To those who, like me, have lived experience with trauma either as an individual and/or a supportive loved one, we know these responses make interacting with others harder for us and them. It is important we learn to recognise our personal trauma responses, then find tools to assist ourselves when confronted. This does take time.

I urge you to please be kind to yourself by validating your experience and being  gentle and understanding of yourself.

The two rules I live by are:

#1: never explain yourself. Adequate Facts can be shared without going that far.

#2: Never take anything personally. Validate and own everything  relating to yourself and recognise what does not belong to you. Let that go with the other person as that is their’s alone.  I have noticed a difference in my life putting this into practice. For example, during COVID times I got on the lift at a train station. It was a small lift and my powerchair filled it. A woman entered it with me just as the doors were closing. Not only was she not wearing a mask and I was at risk, but she coldly asked an inappropriate question. I was physically doing poorly and didn’t appreciate the situation in the slightest. I felt she was brash and rude, but decided it best I did not make assumptions about her. While neither of us were warm  and  friendly, we also were not rude. She listened as I educated her of my reality and she did not sneer back like many do. Sneering happens when we take things personally – hence my second rule. I recognise that there are a number of causes for a gruff manner and I learned that judging her would have caused myself stress which I would have projected onto her creating an inflamed interaction. She had clearly experienced life’s harshness in some way herself. While I do use these questions to educate people, when I’m not well enough to do so, I either give a quick to the point answer or I tell them I am not up for a conversation today. 

May we all learn what it means to  be kind to ourselves and others especially with those who are different. 

Today is International Women’s Day.

A special day to celebrate women’s achievement, to lift all women up, end discrimination, to raise awareness of gender disparity and to forge a world where equality for all women exists.

The theme for this year’s IWD is #EmbraceEquity.

To women everywhere, Happy International Women’s Day.

#IWD2023

Written by PDA President, Andrew Fairbairn

In the context of disability services, we hear the words “choice and control”.  It is much like the other catch phrase, “reasonable and necessary”. Often heard, but with little to no understanding as to what it is.

I have broken this blog into 3 parts, all addressing the issue of choice and control.

1. What is it?

2. When is it?

3. How is it?

Number 1.

In the disability sector, choice and control is the way of thinking about how you arrange your supports and get the services you require.

It means having control over the course of your life and how you make decisions.

Examples:

1. Consumer choice. What sort of prosthetic foot you may choose

2. Complex choice. Adding to the mix things such as ot, physio, exercise physiology

3. Personal life choices. What you eat and what you wear.

Number 2. 

I would posit that choice and control is a part of everything you do.

From what you had for breakfast, to your employment, to where you live and who you want to hang out with.

Using the 3 C’s below, you can successfully exercise your choice and control.

Clarify:

Clearly identify the decision to be made, or the problem to be solved.  Be very specific in this. The more information you have, the better the identification you can come up with.

Consider:

Think about the possible choices and the consequences of each of those choices.

Again, be very specific. As Einstein stated “every action has an equal and opposite reaction”.

Choose:

Choose the best choice. This choice then becomes your decision.

A decision is defined as a conclusion reached after considering all choices.

Will you always make the best decision? Probably not, but using the 3 c’s you have a way to develop your skills in choice and control.

When all is said and done, your decision is based on your choice, giving you control over the outcome.

Number 3. 

There are a few things you need to consider when exercising your choice and control.

Remember the 3 c’s, but even more importantly, develop your own self advocacy skills.

Self-advocacy is the ability to “speak up” for yourself.

Having these skills will assist you to speak up when you are meeting with your prosthetist, your support coordinator, your service provider and even your doctor!

By educating yourself, you will maintain control of conversations and situations that will arise. You will find that even though there may be a lot of choice, by understanding what information is being shared with you, you will be able to maintain composure, not become overwhelmed and still maintain control.

Let’s have a look at 3 steps that will assist you in your advocacy journey:

1. Problem analysis:

#1. What is the problem or issue?

#2. Do you need a new prosthesis?

#3. Do you need to update your plan?

2. Information gathering:

#1. What additional information do you need? Things like policy and procedures, rules, or reports.

#2. Where can you get this information? Limbs 4 life website, peer support, internet search.

#3. Find out who the decision maker is. Is it the doctor, prosthetist, Ndis planner/lac?

#4. Are there others who can help, such as an advocacy service, family, or another allied health practitioner?

3. Solution analysis:

#1. What are the possible outcomes, the specific and realistic solutions to the issue?

#2. Identify possible barriers that might get in the way of these solutions. An example of this may be inadequate funding for a particular prosthetic device.

#3. Ask what the other party will do to help find solutions to the issue.

There is an abundance of training available to learn these skills and I encourage you to have a look around and find what is suitable for you.

Finally, this is what good choice and control looks like.

It looks like better service and disability outcomes.

It looks like dignity of care.

It puts you in the driver’s seat.

It gives you flexibility to direct services.

Greater choice and control will achieve improved outcomes.

With the right information, the right education, exercising choice and control leads to empowerment, self-determination, and control over all aspects of your life.

This then gives you the best life you can live.

Physical Disability Australia believes that knowledge is power and that everyone has a story to tell.

Our posts highlight news and happenings that directly impact Australia‘s disability community and our blogs and webinars ensure that we are informed and that ideas and experiences are shared.

Feedspot recently released its 35 Best Australian Disability Blogs and Websites and the PDA Team is absolutely wrapped that we were named in the Top 10 (https://blog.feedspot.com/australian_disability_blogs/).

With our incredible blog contributors having their articles published on our website (https://www.pda.org.au/blog/) and covering an incredibly diverse range of topics, honest and frank conversations and subjects to educate, inform and spark discussions, we are incredibly proud and grateful for their role in this recognition.

Thank you to all of our bloggers for your efforts.

A big thank you too to all of you who have enjoyed reading our blogs, social posts and viewing our webinars. PDA is here for you and we’re so happy to have you beside us in our journey to empower, represent, include and support our members and wider community.

If you have a blog that you would like us to feature on our blog page, please reach out to us at promotion@pda.org.au.

Stress, anxiety, health problems, huge decisions, money worries, relationship issues and just day to day life can leave any of us feeling overwhelmed.

But it’s important to know that support is available and there are always people who care and want to help.

Family, friends, colleagues, your GP or other health professionals are a good place to reach out to.

However, if you’re not comfortable speaking with them or you’re not finding the support you need there, there are some wonderfully helpful and compassionate organisations that are only a phone call or a click away.

Just talk.

And make sure that you take care of yourself and others.

Lifeline on 13 11 14
Beyond Blue on 1300 22 46 36
headspace on 1800 650 890

With much of Australia gripped by hot temperatures at the moment and with summer looking as though it’s not leaving without a high, keeping cool, hydrated, safe and healthy is incredibly important – especially so for those of us vulnerable to such extreme weather.

The Disability Support Guide has a very helpful article on keeping your cool:

https://www.disabilitysupportguide.com.au/information/article/some-like-it-hot-but-what-if-you-dont

For those of you who are in at-risk bushfire zones, please have your emergency plans in place and keep in contact with your loved ones, neighbours, your local authorities and on top of updates in your region.

You can keep up to date with emergency warnings and advice in your state/territory by going to:

VIC – https://emergency.vic.gov.au/respond/
TAS – https://www.alert.tas.gov.au
NSW – https://www.ses.nsw.gov.au
QLD – https://www.qld.gov.au/alerts
SA – https://www.ses.sa.gov.au/incidents-and-warnings/current-warning-list/
WA – https://www.emergency.wa.gov.au
ACT – https://esa.act.gov.au/bushfire-warnings
NT – https://securent.nt.gov.au

For the latest weather updates visit the Bureau of Meteorology’s website http://www.bom.gov.au

Listen to ABC Radio National for regular updates or:

ABC Sydney on 702am or https://www.abc.net.au/sydney/live
ABC Melbourne on 774am or https://www.abc.net.au/melbourne/live
ABC Hobart on 936am or https://www.abc.net.au/hobart/live
ABC Canberra on 666am or https://www.abc.net.au/canberra/live
ABC Adelaide on 891am or https://www.abc.net.au/adelaide/live
ABC Brisbane on 612am or https://www.abc.net.au/brisbane/live
ABC Perth on 720am or https://www.abc.net.au/perth/live
ABC Darwin on 105.7fm or https://www.abc.net.au/darwin/live

To search for a different frequency go to https://reception.abc.net.au.

Whilst you’re sitting in the shade, in air conditioning or in front of a fan with an icy cold drink, why not check in on those around you or people you know who may find the hot weather a challenge and see if they need help.

Stay cool Australia.

Written by PDA’s NSW Director, Mark Pietsch

Hey everyone! 👋, 

As someone who has lived experience with a physical disability, I know the day to day struggle of trying to deal with barriers to being heard and working towards goals. I know that many of you may be facing similar challenges, so I want to offer a few words of encouragement and support, as well as some tips for navigating the journey towards empowerment.

Navigating life through my 20’s and now 30’s with a physical disability was tough, there’s no denying it. I remember feeling like I was often on the defence and facing a lot of physical and emotional barriers.

Often things were overlooked by my able-bodied peers. Some of the things others can do, for me are impossible, or took a ridiculous amount of effort. To compensate, I kept working harder, kept trying to prove myself and often tried to hide my disabilities, the pain and feeling like a fish trying to climb a tree.

But as I got older, I realised that having a disability didn’t have to hold me back. In fact, it opened a world of opportunities for me to advocate for myself and to help others in similar situations. Embracing myself, including my disability, has helped me develop strategies, plans and aspirations that stretch me in directions that I never saw myself heading. As a young person I never once thought I’d be an advocate, a Specialist Support Coordinator or the owner of an organisation full of amazing people, assisting even more amazing people. If you speak up, and you dare to dream, your voice and goals can be heard.

One of the biggest steps I took towards empowerment was accessing the National Disability Insurance Scheme (NDIS). The NDIS provides support to individuals with disabilities, which can help you access the equipment, therapy and other supports that you need to live your best life. For me, the NDIS was a game-changer and I know it can be for you too!

Of course, even with the support of the NDIS, life with a disability can still be challenging. I still encounter barriers every day, like inaccessible buildings, public transportation and a lack of employment opportunities. But instead of letting these obstacles hold me back, I’ve learned to find creative solutions and to advocate for myself. 

With the right people in my corner, the right funding and a different mindset, my life has changed dramatically!

Here are a few tips that have helped me along the way:

1. Embrace your unique abilities and strengths. Every person with a disability has unique skills and talents, so focus on what you’re good at and don’t let your disability define you.

• Be an advocate for yourself. Don’t be afraid to speak up and ask for what you need. You deserve to live your best life and there are people and organisations out there who want to help you do that.

• Connect with others. Surrounding yourself with supportive friends, family, and peers can make all the difference. Joining a local disability community or online group (like the PDA Social Hour) can also be a great way to connect with others who understand what you’re going through.

• Keep pushing for change. There’s still a lot of work to be done to make our communities more inclusive and accessible, so don’t be afraid to use your voice to help make that change happen.

I hope that these tips help you on your journey towards empowerment.

Remember, you are not alone and there is a whole community of people out there who are here to support you.

With hard work, determination, and a little bit of creativity, you can achieve your dreams and live your best life.

On Sunday we held the inaugural Physical Disability Awareness Day DisabiliTEA event, with people from all over Australia joining us to to bring to life a day that was established after seeing a gap in the awareness calendar for highlighting physical disabilities.

Providing a great opportunity to raise awareness of, and shed light on, the significant number of Australians living with a physical disability, this event was a great success with those attending enjoying a day to listen, learn, help raise awareness and be part of a day of support, friendships and acknowledgment.

PDA Member Laura (pictured) was the lucky winner of a signed copy of our Ambassador, Dinesh Palipana’s “Stronger” book.

With a specifically allocated Physical Disability Awareness Day having not existed either in Australia or internationally, a hardworking Committee (comprising of Sharon, Robert, Melanie, Tammy and Krystal) brought to life an event celebrating the achievements and contributions made by Australia’s physical disability community.

Little did we know that this first year would spike interest globally. Since Sunday we have had a number of organisations and individuals overseas reach out to us to express a real interest in assisting us to turn it into an international awareness day from next year.

With so many wonderful ideas and feedback from those who did attend Sunday’s event, we also look forward to growing and strengthening this opportunity of celebration and recognition moving forwards.

Later in the year we will be getting things moving for next year’s 5th February Physical Disability Awareness Day and will put a shoutout for anyone interested in getting on board to help us in our move to the international stage in just the second year of its fruition.

Together let’s make some noise, be seen, be recognised, be considered and be celebrated.

Hireup speaks to some of Australia’s top disability advocates about Dylan Alcott’s time as Australian of the Year as he prepares to hand over the mantle.

These included PDA’s President, Andrew Fairbairn, who says that one of Alcott’s biggest achievements in the role was to change perceptions about disability, and not just for non-disabled people.

Read the complete article by clicking below:

https://hireup.com.au/news/hireup-speaks-to-some-of-australias-top-disability/?fbclid=IwAR3jofd8yAPe7y7oyCg0sWKCcpgkxW8pAsySk1LDK69rltEoJQMbO9lZCjs

The Australia Day 2023 Honours List recognises 1047 Australians.

Of these, PDA wishes to thank and congratulate the following for their commendable contributions to Australia’s disability community:

COMPANION (AC) IN THE GENERAL DIVISION OF THE ORDER OF AUSTRALIA

• The Honourable Margaret REYNOLDS, TAS – For eminent service to the people and Parliament of Australia, to social justice, gender equality and Indigenous rights, to local government, and to the community. Including Tasmanian State Manager, National Disability Services, 2004-2012.

OFFICER (AO) IN THE GENERAL DIVISION OF THE ORDER OF AUSTRALIA

• Ms Glenys BEAUCHAMP PSM, ACT – For distinguished service to public administration, particularly innovative health reform, industry and science policy, and program delivery. Including Deputy Chief Executive, Department of Disability, Housing and Community Services 1999-2002.
• Associate Professor Rhonda Muriel FARAGHER, QLD – For distinguished service to people with Down Syndrome through research programs and education initiatives.
• Emeritus Professor Bruce John TONGE, VIC – For distinguished service to psychiatric medicine and research, to tertiary education, to youth, and to the community. Including Joint Winner National Research Prize, Australian Society for the Study of Intellectual Disability 1991.

MEMBER (AM) IN THE GENERAL DIVISION OF THE ORDER OF AUSTRALIA 

• Mrs Anne Ferguson FLINT, NSW – For significant service to education, and to those with disability. Including Flintwood Disability Services Co-Founder 1999.
• Professor Lorraine GRAHAM, VIC – For significant service to education, particularly in the field of inclusive learning. Including Member Melbourne Disability Institute Advisory Board since 2019.
• Ms Geraldine Marcia HARWOOD, TAS – For significant service to youth, and to the disability sector. Including Chief Executive Officer Optia Incorporated 1993-2012, Former Chair National Disability Services, Board Member Brain Injury Association of Tasmania since 2020, Former Member Strategy Committee of Jane Franklin Hall at University Tasmania.
• Ms Jean KITTSON, NSW – For significant service to the arts as a performer, writer and comedian. Including Ambassador, Northcott Disability Services.
• The late Mr John Bruce MOXON, Formerly of NSW – For significant service to community health, and to people with physical disability. Including Physical Disability Australia Inaugural President 1996-1998 and Founding Member 1996, Parramatta City Council Access Advisory Committee Chair 1992-2012 and Member current, Physical Disability Council of New South Wales President 1997-2002 and Vice President 1994-1997 and Founding Member 1994, Spinal Cord Injuries Australia President 1984-1990 and Board Member 1984-1992 and Life Member since 2016, People with Disability Australia President (Dundas Telopea International Year of Disabled People Committee) 1981 and Information Officer 1983 and Member since 1980, Macquarie Association of Disabled Students President 1982-1983 and Founding Member 1980 and Member, Program of Appliances for Disabled People Advisory Committee Health NSW 1999-2002, Past Coordinator Wheeling Free program 2SER-FM Radio and Senior Policy Officer Disability and Recruitment NSW Public Service 1984-1990.
• The Venerable Canon Professor Peter SANDEMAN, SA – For significant service to the Anglican Church of Australia, and to the community of South Australia. Including Director Primary Health Care/Director Disability Services, SA Health Commission 1990-1994.
• Professor Katharine Shirley STEINBECK, NSW – For significant service to adolescent medicine through a range of roles. Including Executive Committee Member (Research and Clinical Expertise), Transition Care in Adolescents with Chronic Illness and Disability Network, Agency for Clinical Innovation 2010-2019.

MEDAL (OAM) OF THE ORDER OF AUSTRALIA IN THE GENERAL DIVISION 

• Mrs Ingrid ALDERTON, SA – For service to special education. Including Contributor, SA Disability Discrimination Act Public Inquiry 2004 and Member since 1992, Department of Education South Australia Presenter of The Parent Forum Disability Policy and Programs Directorate 2018 and Manager Special Education Resource Unit and Disability Policy Programs 2014.
• Mr Glenn Lloyd BALL, NSW – For service to the community through a range of roles. Including Disability Nurse and Community Nurse 1980s.
• Mr Kevin James CLIFTON, NSW – For service to the community of Tamworth. Including Volunteer Sunnyfield Disability Services since 2004.
• Mrs Aileen Esme DAVIS, NSW – For service to people with disability. Including Riding For the Disabled Association NSW Branch Vice-President 1982-1984 and Treasurer 1980-1982 and Committee Member 1979-1992 and Founding Member 1972 and Life Member since 1992, involved with horse drawn Carriage Driving for the Disabled, Wollondilly Riding For the Disabled Group Member and Rider since 1994.
• Ms Sally Frances DUNCAN, VIC – For service to basketball, and to people with disability.
• Ms Elizabeth EXINTARIS, VIC – For service to the community, particularly through music. Including Music Composer and Presenter, Disability Standards for Education, Languages Other Than English (LOTE) Program video.
• Dr Lisa FAHEY, NSW – For service to medicine as a psychologist. Including Senior Practitioner NSW Department of Aging Disability and Home Care 1997-2000.
• Professor Chyrisse HEINE, VIC – For service to speech pathology. Including Senior Adviser Cambodia Speech Therapy Program Capacity Building for Disability Cooperation Phnom Penh 2013-2017.
• Mr Warren HOPLEY, NSW – For service to education, particularly to the disadvantaged. Including Acting Principal St Lucy’s School for Intellectual Disability 2016.
• Miss Rebecca JOHNSON, QLD – For service to the Indigenous and LGBTQI+ communities. Including Queensland LGBTQI+ Roundtable Department of Communities, Disability Services and Seniors, QLD Government.
• Mrs Belinda Rose KNIERIM, NSW – For service to the arts, and to human rights. Including Book ‘Unfinished Business’ stories from First Nations persons with disability, Outing Disability, Sydney Mardi Gras, and venues nationally since 2014, Speaker United Nations Commission on the Rights of Persons with Disability Geneva, 2016.
• Mr Barry LEECH, QLD – For service to people with a disability. Including Repatriation Artificial Limb and Appliance Centre (RALAC) Manager ACT Free Limb Scheme 1984-2001 and Director/Prosthetist Canberra 1981-1984 and Manager/Prosthetist/Orthotist Sub Centre Canberra 1977-1981 and Representative Sydney 1976-1977 and Assistant Manager Darwin 1973-1975 and ProsthetistSydney 1970-1971, Prosthetic Consultant Paralympic Teams Barcelona 1992 and Atlanta 1996 and Sydney 2000 and Support Volunteer 1991.
• Ms Julie Helene LOBLINZK, NSW – For service to people with disability. Including Self Advocacy Sydney Board Member since 2021 and Coordinator 1997-2020 and Various positions since 1989, University of NSW Adjunct Lecturer School of Education since 2019 and Guest Lecturer since 2015, National Disability Insurance Scheme(NDIS) Champion, Disability Loop current and Co-writer of blog, Disability and Me – Stories about ability.
• Mrs Keryl Margaret MOIR, NT – For service to local government, and to the community of Darwin. Including Former Member, Disability Access Committee with City of Darwin.
• Mrs Justine PERKINS, NSW – For service to the community through charitable organisations. Including Inclusive and Accessible Communities, National Disability Awards, 2014.
• Mr David PESCUD, NSW – For service to people with disability. Including Creator inclusive sailing programs for people with disability enabling young people and children the opportunity to sail the east coast of Australia.
• Dr Jane Elizabeth SULLIVAN, VIC – For service to the community through a range of organisations. Including Melbourne East Disability Advocacy Volunteer Citizen Advocate 38 years and Committee of Management Member several years in mid 1980s to early 1990s and Life Member 2015.
• Mr David Douglas WRIGHT, VIC – For service to the community of Bendigo.  Including Board Member, Amicus Disability Service 2012-2016.

PUBLIC SERVICE MEDAL (PSM)

• Mrs Jodi Ann CASSAR, NSW – For outstanding public service and leadership working across government to deliver advice, information and support for people with disability, workers and carers during the COVID-19 pandemic.
• Ms Sarah Aileen JOHNSON, NSW – For outstanding public service to Australians with disability through leadership and commitment to the National Disability Insurance Scheme.
• Mr Dale Edward WEBSTER, TAS – For outstanding public service during the COVID-19 pandemic.
• Ms Catherine Ann O’NEILL, ACT – For outstanding public service to health services as the Chief Operating Officer of Canberra Health Services.
• Dr Sally Louise SINGLETON, ACT – For outstanding public service to public health.

John Bruce Moxon has been posthumously recognised in the Australia Day Honours List, receiving the award of Member (AM) in the General Division of The Order Of Australia.

He was Physical Disability Australia’s inaugural President and not only helped to shape our organisation, but also Australia’s progressive disability landscape.

John was recognised for his significant service to community health and to people with physical disability. This included (but was not limited to) his involvement with PDA as inaugural President 1996-1998 and Founding Member 1996, Parramatta City Council Access Advisory Committee Chair 1992-2012 and Member current, Physical Disability Council of New South Wales President 1997-2002 and Vice President 1994-1997 and Founding Member 1994, Spinal Cord Injuries Australia President 1984-1990 and Board Member 1984-1992 and Life Member since 2016, People with Disability Australia President (Dundas Telopea International Year of Disabled People Committee) 1981 and Information Officer 1983 and Member since 1980, Macquarie Association of Disabled Students President 1982-1983 and Founding Member 1980 and Member, Program of Appliances for Disabled People Advisory Committee Health NSW 1999-2002, Past Coordinator Wheeling Free program 2SER-FM Radio and Senior Policy Officer Disability and Recruitment NSW Public Service 1984-1990.

Never forgotten.

PDA WA Associate Director, Melanie Hawkes, shares her story.

PDA WA Associate Director Melanie Hawkes was recently involved in “The Lives We Lead Project” – led by WA’s Individualised Services Inc. and funded by WA’s Department of Communities and Department of Social Services.

Capturing and sharing video and photo stories of people with disability living in their own homes, this social media project works to provide the wider community with a better understanding of the contributions made by PWD and their day to day lives.

You can check out Melanie’s story by going to:

https://fb.watch/h-0gUyEG8x/

Written by Robert Wise – PDA VIC Associate Director

I would like to touch on this subject as many of us have a disability that can be seen – whether we are in a wheelchair, wear a prosthetic, walk with crutches or some other walking aid, have noticeable hearing loss, an obvious vision impairment or another form of physical disability.

Some of us have may have more than one physical disability. Some of us may have a condition yet to be diagnosed. Some of us may be impacted by loneliness, frustration or even depression brought on by disability. Some of us may have transitioned from able bodied to living with a physical disability later in life or we could have a disability from birth that slowly progresses as we get older.

Many of us have to learn many skills all over again or learn new skills and this can lead to other problems as I listed above. I do not want to single out any disability here, just to touch on other issues.

Not so long ago there was not much assistance available that enabled us to cope with our changing lives as we began our disability journeys.

I was recently on the panel of two Physical Disability Australia webinars (“Acquiring Disability Later In Life” and “The impact of physical disability on Family, Friends, and Relationships”). Involvement in these reminded me how important it is to be informed, to be able to share experiences, to be accepted and to harness the power that comes from these crucial tools.

If you haven’t yet watched these webinars, I encourage you to click on the above links and visit PDAs YouTube channel.

Despite disability related problems varying from person to person, our complete needs are often not considered when we require services such as helping us with our shopping, personal care or even help around the home.

Getting out is important and we can have support workers for this as a one-on-one, but some of us only get limited hours for this. What about meeting people and doing activities in a group environment? There are many sporting groups for people with physical disabilities and these are great if you like playing sport or want to try out a new one. But what about those of us who do not like playing sport or those of us who are getting older? Some of us like touring, sightseeing, visiting tourist attractions, going on holidays – all of which can be done one-on-one with a support worker if funding permits. This is fine for some of us. Many of us do not need one-on-one support 24/7. We just need support when things get tough and that’s where a group-based activity can help. These groups have support workers who are there if needed and you can meet people and do what you like to do at the same time – which can help if you are lonely and isolated. Many group-based outings are not made available to people with a physical disability, only those with a mental or intellectual disability. This is a great pity. Whilst people with a physical disability can be independent, some are not.

Group-based outings would be great for them to get out. To be with people, to access the community, to widen their worlds by visiting attractions and to enjoy the company of others. Physical disabilities can vary greatly, but we all have the same needs, wants and rights to enjoy life – in spite of difficulties.

I live on my own and am quite independent, only needing support workers for some daily tasks and assistance when in the community. I too need a break from the mundanity of life that so often accompanies disability. To get out and enjoy myself touring, not having to worry about getting my meals, arranging transport or finding accessible places of interest and accommodations. A group-based activity organisation does this for you. Many people with physical disability do not have funding in their plans for STA or group-based holidays or activities. I think greater emphasis should be placed on the importance of these and the benefits that come with such opportunities. They should be included in our NDIS plan reviews as part of our mental health wellbeing which I feel is part of the what the NDIS is about.

Written by PDA’s VIC Director, Tim Harte

Speaking up for others or oneself is the elementary definition of advocacy. Crucially ‘speaking up’ is a variable course of action in the pursuit of achieving a specific outcome. Different forms of advocacy are characterised through the process of ‘speaking up’ and the scope of the advocacy’s aims. 

Individual/case-based advocacy aims to achieve a specific outcome for an individual. An NDIS appeal that advocated for provision of physiotherapy as an early intervention support in my NDIS plan is an example of individual/case-based advocacy. 

Systemic advocacy aims to achieve outcomes for the benefit of a population of people through modification of policy, procedure, legislation, or practice. A civil class action against a government body for non-compliance of bus stops with relevant disability discrimination is an example of systemic advocacy.

Within the scope of individual/case-based advocacy is: 

• citizen advocacy, involving individuals receiving support from volunteers;

• self-advocacy, where individuals advocate for themselves;

• professional advocacy, where professionals advocate on behalf of an individual;

• and carer/peer advocacy, where carers or peers advocate on behalf of an individual.

The literature base on advocacy in Australia states that professional advocacy is the primary advocacy type operating within the scope of systemic advocacy, however, systemic advocacy, in recent decades, is increasingly utilising knowledge from individual cases to contribute to the collective systemic advocacy case for policy, legislation, or practice change. Collective systemic self-advocacy coordinated by Disabled People’s Organisations, like Physical Disability Australia, conducts perpetual systemic advocacy work, utilising the individual experiences of People with Disabilities to understand flaws in system in order to work with Government in advising and advocating for solutions to reduce barriers and improve the experiences of People with Disabilities as they navigate society.^1-4  

Why is advocacy important? 

Human rights are attained and realised through advocacy.⁵ Considerable historical background validates that advocacy, in various forms, has been successfully used to rectify discrimination and inequity experienced by vulnerable and marginalised groups. Examples of direct action, collective action and movement building by people with disabilities date back over a century, in 1920 the National League of the Blind in the United Kingdom successfully conducted mass protests about working conditions and poverty experienced by the disability community. In recent years, in Australia, the #LetHerSpeak advocacy campaign, founded by Grace Tame and Nina Funnell, successfully employed various key areas of campaigning to achieve legislative reform, amending the Criminal Code Amendment (Sexual Abuse Terminology) Act 2020 (Tas) s 5 to uphold freedom of expression rights for child sexual abuse survivors.^6-9

Physical Disability Australia works to ensure the rights of all People with Disabilities are realised. As a Disabled People’s Organisations, Physical Disability Australia, mission is centred by the lived-experience of our members. Systemic advocacy is the process of us (PDA) speaking up and elevating the voices of People with Disabilities to ensure decision makers know what barriers our community encounters and what solutions are available to resolve and overcome these barriers.

_{1. Dalrymple, J., & Boylan, J. (2013). Effective advocacy in social work. Sage. https://dx.doi.org/10.4135/9781473957718}

_{2. Dunning, A. (1995). Citizen advocacy with older people: a code of good practice. Centre for Policy on Ageing.}

_{3. Forbat, L., & Atkinson, D. (2005). Advocacy in practice: The troubled position of advocates in adult services. British Journal of Social Work, 35(3), 321-335. https://doi.org/10.1093/bjsw/bch184}

_{4. Rossetti, Z., Burke, M. M., Rios, K., Tovar, J. A., Schraml-Block, K., Rivera, J. I., Cruz, J. & Lee, J. D. (2021). From individual to systemic advocacy: Parents as change agents. Exceptionality, 29(3), 232-247. https://doi.org/10.1080/09362835.2020.1850456}

_{5. Brolan, C. E., Boyle, F. M., Dean, J. H., Taylor Gomez, M., Ware, R. S., & Lennox, N. G. (2012). Health advocacy: a vital step in attaining human rights for adults with intellectual disability. Journal of Intellectual Disability Research, 56(11), 1087-1097. https://doi.org/10.1111/j.1365-2788.2012.01637.x}

_{6. Assembly, U. G. (1966). International covenant on civil and political rights. United Nations, Treaty Series, 999, 171. https://www.ohchr.org/sites/default/files/ccpr.pdf}

_{7. Dallaston, E., & Mathews, B. (2022). Reforming Australian criminal laws against persistent child sexual abuse. Sydney L. Rev., 44, 77. https://search.informit.org/doi/10.3316/informit.500121913977664}

_{8. French, S. (2017). Visual impairment and work: Experiences of visually impaired people. Routledge. https://doi.org/10.4324/9781315569536}

_{9. Nash, A. (2001). People. dot. community: A resource for effective community activism. Villamanta Legal Service.}

It is with great pleasure that we announce that Andrew Fairbairn (WA Director) and Nick Schumi (SA Director) were re-elected to their positions and we look forward to seeing their continued commitments and successes in these roles over the next three years.

On Saturday PDA held its AGM – bringing together our Board, Members and Ambassador, Dinesh Palipana OAM.

It was wonderful to have so many join us to hear about the work, successes and momentum of 2022 and the plans for 2023 and beyond.

Thank you to all those who attended and all our Members who continue to play a role in PDA maintaining its place as an active, understanding and relevant supporter of Australians living with physical disability.

If you’re not yet a PDA MEMBER and have an interest in making a positive contribution to Australia’s disability landscape, think about signing up for FREE MEMBERSHIP by going to

www.pda.org.au/membership/

We look forward to welcoming you to the PDA community.

Earlier this week PDA’s President, Andrew Fairbairn, spoke to Channel 9 Perth about the State Government’s delayed decision to commit to implementing the accessibility standards in the National Construction Code.

The WA State government is being called upon to implement accessibility standards in all social and private housing construction.

Check out Andrew’s interview by going to:

https://www.facebook.com/watch/?v=2345062925652841&ref=sharing

Join us to hear what we’ve been up to in 2022, what our plans are moving forwards and be part of the Physical Disability Australia conversation.

With updates from PDA Ambassador, Dr Dinesh Palipana OAM, and the PDA Team, our Annual General Meeting will be a great chance for Members to be an active part of the PDA community.

2:00pm Sydney/Melbourne/Hobart/Canberra

1:30pm Adelaide

1:00pm Brisbane

12:30pm Darwin

11:00am Perth

We hope that you join us and look forward to welcoming you.

Wherever you are in Australia, you can attend via Zoom.

All you need is a phone, laptop, tablet or computer.

But you will need to register by going to:

https://us02web.zoom.us/meeting/register/tZcvdO6orDkqG9DcjONXLQKDcEUDwdf3P6_N

If you don’t have a Zoom account, signing up is free, quick and easy. Follow the prompts to create an account.

If you experience problems, please email us at promotion@pda.org.au or call 1800 PDA ORG (1800 732 674).

After registering, you will receive a confirmation email containing information about joining the meeting.

Meeting documents will be provided ahead of the meeting.

We really look forward to you joining us and saying “hi”.

There are some really interesting, informative and entertaining videos to watch – including our two most recent webinars around “Disability and Relationships”.

In “Relationships Part 1: Family, Friends and Support Workers” (https://www.youtube.com/watch?v=Ijm7gzLKHww) our 3 panelists will share their stories around relationships and the challenges that they have faced and (in some cases) continue to deal with.

From family dynamics with parents, brothers, sisters, maintaining boundaries with support workers, knowing who your true friends are, and an interesting look at relationships from the perspectives of both a mother and son, this is a very insightful presentation.

In “Relationships Part 2: Intimate Relationships” (https://www.youtube.com/watch?v=gUOhg7irPZ0) the presenters will honestly and frankly share their personal stories, discussing the ways disability has shaped and influenced their relationships. They will also give insight into challenges encountered in their love lives and the importance of both partners’ needs being central to the conversation.

From waning libido, to loss in confidence, to finding practicable ways to be intimate and finding (and keeping) your perfect soul mate, this webinar will cover topics that are all too often swept under the carpet.

What happens if disability gets in the way of a sexual or emotional relationship? What if sex is a challenge or just not of interest to one partner? What if fear or lack of confidence sabotages a relationship or the search for someone to love and to be loved by?

A great exploration of intimacy around disability that shouldn’t be missed.

Do yourself a favour and check these (and all of PDA’s other videos)out.

Whilst you’re there, don’t forget to subscribe to the PDA YouTube channel so that you’re kept up to date with all future webinar additions.

Tyson Grubb (CEO, Instrument Choice) has written an interesting piece on autonomous cars.

PDA’s NSW Associate Director, Peter Simpson, believes that this technological advancement will leave wheelchair users out in the cold in the same way that wheelchair accessible taxis has done.

Thank you to Tyson Grubb for allowing us to share this article.

I’m a bit of a thinker, often I get side tracked considering how the future is shaped by the decisions and technologies that are coming about today.  

In 2016 I was fortunate to get access to see Googles autonomous vehicle test track in California, watching these cars go about their business with no drivers on board made it clear to me that the future of human drivers was limited.  When we consider the exponential growth in computing power (check out Moore’s law), the reliability and likelihood of this technology becoming mainstream grows exponentially.

Autonomous cars will likely be commonplace at the start of next decade.  This will change the way we travel, the way we own cars and is predicted to bring traffic accidents close to zero.  You might have heard about some of the effects of self-driving cars, like the loss of jobs of truck drivers or the reduction in accidents once most cars are autonomous.  There are other knock on effects of technology you may not have thought of, there may be other factors that could affect these outcomes, but these are my predictions based on what could happen (without considering other unknowns such as world economic changes or government regulations etc).

1. Regional house prices will grow faster than in the city
Many people dream of a tree change, but their work commute stops them from making the leap.  Now with work from home increasing (because of the pandemic), regional prices have pushed up, this trend will continue when you can do other things instead of driving (while your car whisks you to work), you can sleep, work, have breakfast, have a meeting or catch up on more Netflix, you won’t think twice about a longer commute.  And with regional property supply being restricted while demand increases, the price of country living will go up.

2. Will you own a car?
Probably not.  You see, once the cost of the driver is eliminated then the cost of a ‘taxi’ or ‘Uber’ type service will shrink significantly, and for most people it will be much cheaper to use a short-term car hire service than to own a car (forget dealing with the maintenance costs and issues that comes with car ownership).  You may miss your own car at first, but when you can press a button on an app and a car arrives to your location within minutes and can take you anywhere for a small fee, why would you bother having your own car.  The question then will be, what will you use your garage for, a games room, home office or the ultimate man-cave or she-shed?

3. Car parks will die
So, cars will pick you up from wherever you are and drop you off where you want to go.  But what does the car do in-between?  It picks someone else up, it keeps working, it keeps transporting people and so does not need to park anywhere.  Of course, it will need to refuel or recharge its batteries (as they will be electric or possibly hydrogen powered), but this will be a much shorter period than if you were to park your car for meetings, shopping, entertainment etc.  And the carparks for charging will probably exist in cheaper real-estate on the outskirts of cities (pushing up the prices of the land on the edges of cities a little too).

4. The car insurance industry will collapse
With only companies owning the cars (this is Uber’s plan by the way), and no accidents, what will the car insurance industry be able to charge for?  Not much, car insurance will be a thing of the past for the general consumer and the companies that own the cars will pay a much smaller amount as accidents reduce to next to nothing.

5. Bus routes will become more nuanced
Buses will be smaller and the number of routes will increase, buses can take you closer to where you want to go.  Think of them more as a larger car pooling service where you are sharing with a group of people based on where you all want to go at that point in time.

6. Package delivery costs will shrink
With the drivers not needed for long haul cross road transport, safety rules not requiring breaks then the cost of trucking goods will decrease.  For cross town transport, the autonomous truck will rock up at your house or work, and a drone will do the last 20m of delivery, dropping the parcel safely at your door.

7. Police will need to raise revenue from somewhere other than traffic violations
Autonomous cars will be programmed not to break the law and so won’t.  In 2017 Australian speeding fines totalled $1.1 billion, without considering all other traffic violations and that this number would likely to have increased in the last 5 years.  This is a lot of cash the government will not be receiving, but then perhaps less police will be needed as they won’t be spending their days monitoring traffic. Will there be less police, or will police be moved to where they are needed?

I am sure there are more knock-on effects, and over the next 8-10 years a lot will change too.  

How do you think autonomous cars will change the world?  Is it good, bad, or just is what it is?  Would love to hear your thoughts.

Join us to hear what we’ve been up to in 2022, what our plans are moving forwards and to be part of the Physical Disability Australia conversation.

With updates from PDA Ambassador, Dr Dinesh Palipana OAM, and the PDA Team, our Annual General Meeting will be a great chance for Members to be an active part of the PDA community.

We hope that you join us and look forward to welcoming you.

Wherever you are in Australia, you can attend via Zoom.

All you need is a phone, laptop, tablet or computer.

But you will need to register by going to:

https://us02web.zoom.us/meeting/register/tZcvdO6orDkqG9DcjONXLQKDcEUDwdf3P6_N

If you don’t have a Zoom account, signing up is free, quick and easy. Follow the prompts to create an account.

If you experience problems, please email us at promotion@pda.org.au or call 1800 PDA ORG (1800 732 674).

2:00pm Sydney/Melbourne/Hobart/Canberra

1:30pm Adelaide

1:00pm Brisbane

12:30pm Darwin

11:00am Perth

After registering, you will receive a confirmation email containing information about joining the meeting.

Meeting documents will be circulated ahead of the AGM.

We really look forward to you joining us and saying “hi”.

Written by Tammy Milne – PDA TAS Associate Director

The most terrifying experience of my life was the day that my voice was taken away.

For most of my life I have lived with paralysed vocal cords. If I was a horse I would have been shot! In horses it’s called roaring and means they struggle to breathe and make a noise like they are roaring for breath and that’s exactly my experience. Most people breathe through a nice big fat airway like a hose pipe, with me it’s like I breathe through a piece of spaghetti, dragging each breath in slowly and using all my energy to do so. It feels horrible and sounds horrible and basically it is horrible, but I have learned to live with it.

Then came Covid-19. I contracted it in April. My spaghetti pipe was congested, but somehow I coped ok. Then the next month came, along with virus number two and then virus number three.
I presented at the ER every day for four days, unable to breathe and really struggling. The ER doctors finally wrote a referral to my GP to ENT services in Hobart. After some issues with miscommunication, the referral was sent through.  Two weeks later I was in Hobart’s Specialist Clinics. 

My lovely ENT doctors Raj and Nicco were like excited children when they looked down my throat with the scope. Like I knew I was bad and had been getting worse with age and since covid, but I had no idea that it was that critical.  I was breathing through an airway space of about 2mm and my vocal cords were static – neither opening or closing as normal vocal cords should.

I was categorised as CAT 1A which is basically top of the list of elective surgery and was told I would be operated on within a month after some other tests were completed.

So on the 5^th October I presented at Wellington Clinic for my pre-admission. I spent the next day and a half trying to have as much fun as I could, which also included getting a guardianship order to give my daughter power of decision making  if things didn’t go well. Not the state guardianship orders, but my own private lawyer drew them up. Something that I suggest everyone should do before something huge like this.

At 6.45am on Friday 7^th October, I presented for admission and at about 11.30am I was sitting in recovery drugged to the eyeballs – breathing like a marathon runner but not able to speak. My voice was gone. The operation of which I had consented to save my life involved cutting a section of my vocal cord to make the opening to my airway bigger. For this to happen and for recovery I was given a tracheotomy. I now breathe through a pipe in my neck. This will be temporary as my vocal cords heal.

So what happened next?

I have a second language. I use Auslan (Australian sign language) – the language of the Deaf.  So as soon as I woke up from surgery I defaulted to sign. Many people who have a second language do this when they are unable to communicate in their first language. The thing is not one of the hospital staff could sign AT ALL. 

The more I couldn’t communicate, the more frustrated I became. I am an advocate. I self advocate and I advocate for others. Communication is part of my being – as it is for everyone. Can you imagine what it is like to wake up with your voice is gone? It’s like your autonomy is gone. Things happen to you rather than you having a say and being able to ask questions. The fear is real. Your control is gone and you are helpless.

I was given a communication whiteboard early on but, as my frustration levels increased and my fear escalated (especially after the drugs wore off), my handwriting became increasingly hard to read. It’s funny as when I did a prac on a prep class they actually told me my handwriting was terrible. Out of the mouths of babes!

I continually asked each new nurse, doctor, physio, speech therapist, dietican if they could sign? They could not. By day two  my daughter was coming into ICU , interpreting regularly. She grew up with Deaf kids in her class throughout her schooling and of course I have signed with her throughout her life. On one occasion she sat and interpreted for 4 hours straight. Relaying my fears and anxiety to the nursing staff.

It wasn’t until day 8 post surgery that a professional interpreter was booked to come. I was to have my tracheotomy changed and she was able to voice all my concerns that I signed to her about what was going to happen. I could have cried with gratitude. I could sign, “ouch that hurts” as the procedure  went on! She was there to be my voice and I could communicate freely again.

Coincidentally that night a young Doctor, Dr Dave, came to change my cannula and he too could sign. However, he was from Ireland so his signing was like the difference between German and English. But he understood and had seen how vital sign language was for his sister at home in Ireland using sign language. We had a good chat with writing things down and mime.

After working as an interpreter for the Deaf for the first 16 years of my Education Department career, and being involved in the Deaf community, like most people I still only had an empathic view of what it’s like to not be understood. Of having your means of communication not understood by the wider community, of the discrimination, the miscommunication, the lack of control and the loss of autonomy. Like them, things happened to me rather than my being involved in decision making with a clear understanding of what was going on. I couldn’t ask my questions freely. I was silenced.

This experience has taught me so much! Sign language needs to be a part of our health system. There needs to be charts of key word signs in each room with words like toilet, food, drink, pain, yes and NO! There needs to be more access to interpreters in ED. Imagine coming into ED and not being able to communicate your needs? There needs to be sign language classes built into nursing courses at University. 

The benefit of this is that student nurses will see what it’s like to be from a background where English is not your first language. It’s not just the Deaf who use sign language. Many people with intellectual disabilities also use key word sign, just like Dr Dave’s  sister in Ireland. Lastly, we need to introduce sign language to practising nurses on the wards. We could run some classes. Heck I’m up for it! If just one nurse on a shift had at least the basics of sign, imagine what that would have done for me and for my comfort during my hospital stay. So I plead with government to listen to my story and move forward with a plan to make communication more inclusive for Deaf and intellectually  disabled people in hospitals and for people like me. My experience was only for 8 days, but those 8 days were the most terrifying and frustrating time of my life. My voice will come back, but the lingering memories of being isolated and alone will not leave me.

A recent Pro Bono Australia article (https://probonoaustralia.com.au/news/2022/08/research-shows-economic-cost-of-declining-mental-health) highlighted the findings of an “Impact Economics and Policy report” commissioned by a number of organisations including the NSW Council of Social Service – NCOSS (NCOSS) and the Mental Health Coordinating Council.

This report included the rising rates of mental health disorders during the Covid-19 pandemic, the associated economic and social costs and the spate of natural disasters that have exacerbated the situation.

“People with a disability are four times more likely than people without a disability to experience high levels of psychological distress and are up to four times more likely to die during a natural disaster.”

In March this year a coalition of 40 leading disability rights (including Physical Disability Australia), advocacy and peak body organisations wrote an open letter to politicians across the country prior to the election, in which they demanded improved disaster and emergency responses for people with disability.

You can read this by going to https://qdn.org.au/wp-content/uploads/2022/03/Final-Joint-Open-letter-leave-no-one-behind-310322.doc.pdf

With flood devastation currently impacting much of Australia, our Government must action the development and implementation of a comprehensive and disability inclusive disaster preparedness plan to reduce the human impact of disasters.

#LeaveNoAustralianBehind Mr Albanese.

Featuring the Hon. Bill Shorten MP (Minister for the NDIS) and Co-Chairs, Professor Bruce Bonyhady AM and Ms Lisa Paul AO PSM, THIS WEBINAR IS OPEN TO EVERYONE and will be a great opportunity to hear more about the Review and how you can get involved.

AUSLAN interpretation and live captioning is available for attendees requiring these services.

Simply join the webinar online at the starting time by going to:

https://healthevents-au.webex.com/wbxmjs/joinservice/sites/healthevents-au/meeting/download/be681f4970cb49c084737ac2d49cea93?protocolUID=3eee09cc71cc70d22581df10e18d071c&isIPADAsMobile=true&MTID=m0248205eaa4ec77575142ab4c0f14d6c

YOU WILL NEED WEBEX MEETINGS. If you don’t already have this make sure that you have it installed ahead of the webinar by going to:

https://apps.apple.com/au/app/webex-meetings/id298844386

OR

you have the option to call in (AUDIO ONLY) on 61-2-9338-2221 at the time of the webinar.

The webinar will also be recorded for those unable to attend the live event.

Coming up on the 2nd and 3rd of November, Australia’s Disability Strategy National Forum will take place and you’re invited to join this important event via livestream.

Providing an opportunity to participate in panel discussions with industry experts and community representatives with disability, you’ll be given a chance to have your say on Australia’s Disability Strategy 2021-31. This is a Strategy that will shape our country’s disability policy in crucial areas such as employment, housing, education, health and wellbeing.

Key speakers will include:

• Dylan Alcott AO (Australian of the Year)
• Amanda Rishworth MP (Minister for Social Services)
• Dr Dinesh Palipana OAM (Doctor, Lawyer, Disability Advocate, Author, PDA Ambassador)
• Caro Llewellyn (Wheeler Centre CEO)
• Sandy Jeffs OAM

Registrations are limited and close 1 November 2022 so don’t delay.

REGISTER NOW by going to:

https://adsnf.bettercast.io/?mc_cid=c256bb16ea&mc_eid=fca9123436

Auslan Interpreter and live closed captioning will be available for the live stream. More information on using the platform will be sent closer to the event.

If you have other accessibility requirements or questions, please let us know by sending an email to disabilityreform@dss.gov.au.

One of our most requested webinar topics has been around relationships and the impact that disability can have on connections with family, friends, partners and even relationships with ourselves.

In the first part of this two part series on Monday 10th October at 7pm AEDT, we will look at and explore the stresses, struggles and interactions that can affect the dynamics of our relationships with family, friends, carers and support workers, sharing personal stories and what did and didn’t work in resolving these issues and concerns.

In the second of this two part relationship series on Tuesday 11th October at 7pm AEDT, intimate relationships will be covered, along with the importance of self love and learning to treat yourself with kindness and respect in order to ensure personal growth, wellbeing and not settling for second best.

To register for Part 1 (Family, Friends, Carers, Support Workers) go to:

https://us02web.zoom.us/webinar/register/WN_u7n0wuQMRPSfGvx4LSUJYw

To register for the “adults only” Part 2 (Intimate Relationships) go to:

https://us02web.zoom.us/webinar/register/WN_sYyGKuP1SBmkbNw3jJ03JA

We hope that you will join us for these webinars.

If you not able to attend these live events, they will be made available to view via the PDA YouTube channel:

https://www.youtube.com/channel/UCMyTzhTbs2oLH-WZR18zX2Q

It is with sadness that I write to inform you of the passing of one of PDA’s long-standing members, Janine Neu.

I served with Janine on the Committee of Management of People with Disabilities WA from 2017 to 2019. I fondly remember very robust discussions regarding finances and how to best utilise them. This usually involved me wanting to spend, and her telling me that I couldn’t.

Janine was a very quiet person, reflective, until she had something to say, and then you knew you were being spoken to!

On behalf of the Board, Staff and Members of PDA, we would like to offer our most sincere condolences to Janine’s partner, Bernard and all her family, friends and colleagues.

RIP Janine.

Signed Andrew Fairbairn (PDA President)

Written by Andrew Fairbairn – PDA President/WA Director

A close friend, ally and PDA member, Clare, attended the 15th Conference of State Parties to the Convention on the Rights of Persons with Disabilities (COSP) at the United Nations Headquarters, New York, from 14 to 16 June 2022. At the conclusion of this she was sent an invitation to attend the APMCDRR in Brisbane.

She was very excited about COSP and tried to explain to me what it was about. I didn’t really understand, so she said that we must go to Brisbane together and then I would get it.

Taking her on her word, we booked flights and accommodation and headed off.

Well, what I saw, and what I experienced was mind blowing. 

On Day One we were invited to attend a networking session and meet people with disabilities from all over the world. We were asked to attend a meeting to discuss the Mid Term of the Sendai Framework for Disaster Risk Reduction (DRR), https://www.undrr.org/publication/sendai-framework-disaster-risk-reduction-2015-2030 which is a great read on its own. I was able to talk on behalf of PDA and the work we do in Australia and how it fits into the framework. Thanks to Queenslanders with Disability Network (QDN) and People with Disabilities Australia (PWDA) for hosting a fabulous lunch. 

Day 2-4 saw meetings and discussion on topics such as:

• * Experiences and Challenges of Emergency Management Volunteers to Enabling resilient, sustainable, and inclusive infrastructure transitions in Small Island Developing States

• * Gender considerations in DRR 

• * Climate Change

• * Building resilient Communities by investing in DRR Literacy for proactive Actions focusing on “Leave No One Behind”

I got to meet some very motivated people from all over Asia Pacific including Setareki Macanawai, the CEO of the Pacific Disability Forum from Fiji, John from the Tongan Disability Advocacy Network and Kepueli Ngaluafe, a very recent amputee from Tonga who works in the Ministry of Finance.

The days were full, but for me, the real work was done at night. I had the opportunity to share PDA with some academics from the University of Newcastle, the University of Melbourne, and the University of the Gold Coast. All of them are keen to connect and, hopefully, do some paid collaboration with us around DRR for our PWD here at home. I got to meet some fabulous people working in DPOs in Australia, some folk from AFDO (Australian Federation of Disability Organisations), some folk from WWDA (Women With Disabilities Australia) and some amazing people from QDN.

I would try to explain what this it was like to be at this conference. I have been to way too many conferences, but this was so worthwhile and I can see great things coming out of it for PDA, for PWD and for the whole of Australia.

When it rolls around again, who is coming with me? 

I guarantee, you will not be disappointed.

Written by Melanie Hawkes – PDA WA Associate Director

I received my first power wheelchair when I was three years old (almost 40 years ago).While it is a struggle some days (when my support worker can’t come to get me out of bed, for example), it helps to have a positive attitude. There’s no point complaining about what I can’t do. My parents raised me with a can-do attitude, and I am grateful for what I have.

I don’t need pity. It’s not a “shame” or “a disaster” (an actual comment from someone recently) that a childhood illness paralysed me from the neck down. I am fortunate it happened before I turned two, so I don’t know what I’m missing. My wheelchair doesn’t confine me. In fact, I quite like having a physical disability. I have a great life. 

There’s actually many advantages of having a wheelchair. So many, that I compiled a list:

• * I always have a seat. Crowded bus or train? No problem. The only time I wish I didn’t take my wheelchair everywhere is the cinema. The leather recliners look so comfortable. (On a side note, why should I buy a ticket when I take my own chair?)

• * I never get sore feet. I can walk my dog, wheel to the shop and sit in a queue without getting sore feet at all. And no, my bum doesn’t get sore from sitting down all day. I have a very comfortable cushion. 

• * Got lots to carry? I’m your girl. I can carry shopping bags on the back of my chair and drinks on my wheelchair tray. As long as I’m not too wide for standard doorways, and I don’t hit a bump and spill my drink. That is why you don’t drink and drive, right? 

• * Parking is amazing. As long as you have your ACROD parking permit, you can choose any big blue park. They’re conveniently located right by the door of the shops, library and cinema, so you never have to “walk” far. 

• * I get a Companion card. Every time I book a ticket to a show, sporting event or ferry ride I get a free ticket! This is so that I don’t have to pay for my support person to attend. I wish airlines would honour it too.  

• * Some of us are lucky enough to get assistance dogs. They are trained (and licensed) to go everywhere, including on public transport, in shopping centres, restaurants and the cinema too. They can do a range of tasks to assist, like picking up dropped items, opening and closing doors, taking my shoes and socks off, and pressing lift buttons. It’s great being able to go everywhere with your best friend. My dog Upton isn’t licensed now, but he still helps me at home.

• * I never have to pick up dog pooh, or clean the house, or iron clothes, or wash the dishes. My support workers get paid to do that! 
  
  
• * I never have to sit on a cold toilet seat. I have a nice padded commode that I can move out of the cold bathroom, or sit under the heat lamp to do my business. 

• * I can’t faint or fall over and hurt myself. Or trip over a cat or slip on wet floors. Especially handy when I’ve had a few drinks. I can still swerve and hit something, but not as painful as falling on the floor (I imagine it to be).

• * I can’t be taken in the back of a police wagon. Well they could try, but I wouldn’t be much good without my wheelchair. I was on holidays once and noticed the town’s police station had steps up to the front door. You beauty, I thought to myself. I could get away with all sorts while I’m here. I can’t get in the station if I’m arrested! 
  
  
• * My pants won’t fall down. I can wear clothes that are too loose, have a stain or tear at the back, or if they’re too tight, have the zip undone! I’m sitting on them, so you wouldn’t notice. I have two skirts that have small tears at the front. Now I wear them back-to-front! My mum scorched the back of my year 12 ball dress, on the day of the ball. No problem, I still wore it, nobody knew except us. 

• * My shoes don’t get worn out. They last many years, unless Upton chews them when he pulls them off. If I’m sick of wearing some I pass my old shoes on – they’re like brand new!

• * I can’t burn my feet on hot pavement or sand, or step on broken glass. That’s gotta hurt! I get someone to check the temperature of the floor before walking Upton on hot days. 
  
  
• * I always have a driver. I have a van that my support workers drive me around in. No matter where I want to go or how much I drink, I always have someone to drive me places. Or I get public transport or a maxi taxi. But either way, I have a driver take me places. I like not having the responsibility of driving, but I do have a back-seat driver’s licence!

There is plenty to love about having a physical disability. I’m grateful for all my support workers who help me with the things that I can’t do, and for the NDIS that pays for them. 

Can you think of any others?

Congratulations to Kurt Fearnley on his appointment as new NDIA Chair, and also to Graeme Innes, Marie Diamond and Dennis Napthine in their roles as Directors and Rebecca Falkingham as Chief Executive.

With the number of people with a disability serving on the board now sitting at five and with Kurt being the first person with a disability to chair the board of the agency, there is great hope that Australia’s disability community will finally be seen and heard and that the NDIS will finally reflect and uphold the intended principles that accompanied the Scheme’s formation 10 years ago.

https://www.9news.com.au/national/kurt-fearnley-national-disability-insurance-agency-chair-ndis-federal-politics-news/cbdbbbd3-f950-4bbd-9de3-ad56632f8eca

Healthy, honest, dependable and loving relationships are important for everyone – but perhaps especially so for people living with disability. 

In our upcoming 2 part webinar around relationships (Monday 10th and Tuesday 11th October at 7pm AEDT), we will both be looking at the impact that disability can have on relationships and sharing stories and advice based on personal lessons learnt from journeys taken alongside others through life.

In part one of our relationship webinar, our panelists will share their thoughts and experiences around relationships with family, friends, carers and support workers (both positive and negative) – giving insights into past and present relationship issues and how they personally worked to address and overcome these problems and concerns.

From the dynamics surrounding carer expectations and duties to transitioning to independence as an adult, parent/child relationships, sibling struggles, changes to friendship circles and interactions, and the invisible line between support worker and friend, this first webinar will cover issues that are familiar to so many.

In part two of our relationship webinar series, our panelists will share their experiences, thoughts and advice on intimate relationships and work to normalise this topic and knock down the stigma and untrue stereotypes that surround disability and intimacy. 

This webinar will look at the intrinsic desire, need and want for loving, caring, physical and emotional relationship with others – regardless of individual circumstances.

The negative cultural and societal stereotypes and prejudices that can surround people living with disability in forming and maintaining an intimate relationship will also be explored.

And our panelists will also breakdown the false assumption that disability renders a person incapable of being sexual, passionate and involved in an intimate, romantic and fulfilling relationship, and that intimate relationships between abled bodies and those living with a disability are solely founded on dependency or fetish-based relationships.

To register for Part 1 on Monday 10th October at 7pm AEDT (Family, Friends, Carers, Support Workers) go to:

https://us02web.zoom.us/webinar/register/WN_u7n0wuQMRPSfGvx4LSUJYw

To register for Part 2 on Tuesday 11th October at 7pm AEDT (Intimate Relationships) go to:

https://us02web.zoom.us/webinar/register/WN_sYyGKuP1SBmkbNw3jJ03JA

AS PART 2 LOOKS INTO INTIMATE RELATIONSHIPS AND WILL CONTAIN ADULT CONTENT AND DISCUSSION, ALL ATTENDEES MUST BE 18 YEARS OR OLDER. AS SUCH, IN REGISTERING TO ATTEND THIS WEBINAR, ALL REGISTRANTS ACKNOWLEDGE THAT THEY ARE 18 YEARS OR OLDER.

We hope that you will join us for this interesting webinar series.

Judy Antonio was the Patron of the Business DisABILITY Awards before she sadly passed away in 2016 with this illustrious Award recognising a business, group or individual that epitomises the values of social inclusion espoused and lived by Mrs Antonio.

Following the sad passing of John Moxon, tributes have been flowing strongly for a man who was admired, not just for his character and presence, but also for his incredible contribution to Australia’s disability community.

Jeremy Muir knew John both professionally and as a friend and has written a fitting accolade of gratitude, respect and admiration to a giant among men.

He has kindly allowed us to share his memories and heartfelt celebration of John and his legacy that he has left us all.

“If you looked up the word ‘conviction’ in the dictionary you would most likely find ‘John Moxon’.  John was one of those people who knew how to fight the good fight and he did so with intelligence, research, conviction and good old fashion gusto.  His energy was endless and contagious.

John was long time member/President of the Physical Disability Council of NSW (PDCNSW) and then was a founding member and former President of the PDC Australia, now PDA. 

John fought for the rights, not just of people with physical disabilities but disability rights in general.  John worked tirelessly for over 30 years advocating for the rights of people with disabilities at a national and a local level.  He won well deserved awards and was applauded by those at the highest level.  He was truly an amazing human being.

John was a friend, a much better friend to me than I was to him.  He taught me so much about living, about how to live successfully with a physical disability.  John helped me believe I belonged and that I had every right to belong.  He helped me understand that it was okay to ask for help and to give it.  He truly embodied the word empowerment and he never waived from its depth and meaning.

John was great fun.  Some of my fondest memories are of having dinner at a suitable accessible restaurant after a day-long meeting with him, his wonderful wife Margaret, the dry and smart Kevin Byrne (RIP), the formidable Maurice Corcoran and the always encouraging and clever Sue Egan where we would often talk and laugh for hours.  I especially loved listening to John’s stories of his racing car driver days and when he was on student radio at university. He felt to me like such a rebel leader, which I found fascinating.  He had such confidence, always, always.

John always appeared to love what he did, and I used to think how can I bottle that self belief.  John loved Margaret, he loved his children and his grand children with that same conviction.  John didn’t do things by half.

When you are accessing an accessible building, riding on accessible transport, attending an accessible concert or event, know that it is because John fought for it, John audited it, John campaigned for it, John contributed to the policy and legislation for it.

The world is now a better place because of John Moxon and I’m a better person for knowing him.”

Vale John Moxon.

1938-2022

Written by Paul Watson – PDA NT Director

My disability is a very visual one that without correct clothing can not be hidden.  For many years I was embarrassed, in fact so self conscious it would stop me from living a life like so many others.  

Being an emputee can put restrictions on many of the things you do in life, but my internal battle with self image in my late teens through to early adulthood haunted me.  When I came to terms with the fact that I was gay it was amplified. I was able to camouflage my sexuality, but my disability was always forefront.  

I did not know any other amputees when I was growing up. All the amputees I met were at clinic and they were much older.  Even in medical and clinic situations, my stump was a close guarded appendage that I was extremely uncomfortable to display – let alone to have it touched.  When I lost my leg I was 10, school was rough – we all know that kids in their innocence can be cruel with things that they do not understand.  I myself did not really understand.  When everyone else was running and jumping, I was on crutches and just about to start the journey of rehabilitation.  Moving into high school I was struggling with identifying my sexuality.  This, topped with the day to day comments and taunts about my disability, caused me to pull back, caused me to question my place on this planet.

Coming to terms and understanding about my sexuality even at that point in time was an easy transition. It was there but, unless I chose to disclose it, no-one would ever know.  I was old enough and (thanks to early internet gained information) able to form a circle of friends who helped me understand who I really was.  But I felt so disadvantaged as I was now gay with a disability in a harsh world. Who would want to enter into a relationship with me?

Technology in limbs was moving fast and advancements meant I could walk (Gate) more naturally and I could, with long pants, feel like I was blending in. However, I was always self conscious of the fact that I was so different.  

I was now of an age where real relationships could form, both on the emotional and physical sides, but I was so guarded. Quick interludes could happen, but I was unable to commit to anything more.  To do so would mean that I would have to face my fears. The fear of judgment. The fear of questions. The fear of showing the most intimate part of me.

In my life I have had 3 real relationships. I sabotaged the first 2 with my insecurities.  Reminiscing on them, I feel guilty that someone was prepared to commit but I was just so insecure with regards to my disability that I destroyed any chance.  The third was so stubborn that he saw through my subterfuge and used understanding and compassion against me.  He was able to understand my struggles with my disabilities and was there for me – without ever asking questions or showing judgment. He was in fact my unspoken support in life.  Not just my partner, friend, confidant and lover – he was my disability support person who I unwittingly relied on for so much.

In our relationship I never let him see me fully “disabled”. It was there, but I never let him see my stump. Never let him see me without my limb on – no matter the pain and suffering I had to sustain.  I couldn’t.  I was always in bed first so he would not see me crippled. One night he came in and sat on the edge of the bed with a cup of tea for me, as he did many nights to chat.  This time was different. He said that he’d noticed that I was struggling, limping and in noticeable pain.  I tried to disregard it as nothing, but he pushed asking me what was going on. I felt cornered and vulnerable. He said that he wanted to know. He needed to know. He could feel I was suffering and he loved me and it hurt him that I could not talk to him.  Reluctantly I explained that I had a pressure sore that was inflamed and causing extreme discomfort, but that it would soon be gone.  He asked so many questions that I had never wanted to answer. I did though.  Then he asked to see my stump – something I had never let him see. Something I never wanted to share with anyone. It was my dirty little secret that I never wanted to see light of day.

I gingerly slid it out from under the covers, revealing its pale pasty inflamed self. He looked at it with so much compassion, then he looked me in the eyes and asked if he could touch it. I was welling with tears from the fear.  The fear that he would be repulsed. The fear that he would see just how weak I was. The fear that he would see me as a crippled freak.  

He put both his hands on my stump, one either side of my knee. He was so gentle. He whispered how he wished he could take away the pain.  Then he lowered his head and kissed my knee and from that moment I just felt safe, I felt free, like the weight of the world had just escaped me. In that moment I knew that he truly loved me for all of me.  He had so many questions. We had been together for almost 8 years and not once had he asked. He just knew without asking how I felt about my disability.     

From that very moment all my self doubt about my disability just washed away. I lost the feeling that I was a freak who needed to hide that part of me from the world.  It was a strange feeling that took me some time to come to terms with.  All these years of feeling this way had become a part of me, one that I know I used to push people away before they got too close.  It took the love and compassion of someone understanding me for me. 

Something that should have been available to me when I was younger.

You see when I first lost my leg, like most amputees, I grieved for it. In losing a huge part of yourself, you feel disconnected, you become different from and to everyone.  I had no real supports in this to help me understand that I am still me, with just a little less of the physical me.  My family did their best, but it felt more like pity and remorse for what they felt they had done to me.  We live in a world that is just finding its understanding, I mean real understanding where things outside of the “normal” are normal.  

Being part of an organisation like PDA to me is normal. It offers supports and information to those who need it when they need it.   In a world surrounded by so many you can feel so isolated. I wish that groups like PDA, made up of people just like me, were there when I obtained my disability.  I lost so much of my life living with insecurity, self doubt and what I now know as resentment.   It just took one person to change my life for the better.  Disability has been around since the dinosaurs, but still the information and supports are not getting to where they need to be.  I used the internet (with its limited capability back then) to help understand my sexuality, but the information I required to help me understand my disability and issues surrounding it were just not there.  The other thing I have taken away from this, is that the people who love us most and are close to us are our unspoken heroes. They take up a role we never expected or wanted them to have. 

It is with great sadness that we learnt of the passing of PDA’s founding President and tireless disability advocate, John Moxon.

A true gentleman, deeply respected by the PDA Board, its Members and the disability community.

John’s friendship, support and guidance was always appreciated and we will miss him greatly. A truly wonderful man.

We send our love and thoughts to Margaret, Bruce, Ray, Karen and grandchildren.

John, you will be greatly missed.

R.I.P.

With WA, NSW and SA opting out of changes to the National Construction Code, disability and housing advocates are asking government to adopt the new construction measures and mandate the proposed code.

PDA’s President, Andrew Fairbairn is a staunch advocate for these necessary reforms to Accessibility Living Standards, having recently endured a 3 year upheaval in having his home retrofitted to allow him to live a comfortable, safe and reasonable life in his own home.

Earlier this week he spoke with ABC Perth’s Nadia Mitsopoulos, Presenter of “Mornings with Nadia Mitsopoulos”, about this important issue.

You can hear his interview here from 13:00.

https://www.abc.net.au/perth/programs/mornings/mornings/14030658

“Queensland Disability Advisory Council members announced.

Queenslanders with disability will continue to have a strong voice with the appointment of fourteen members to the Queensland Disability Advisory Council (QDAC) for a three-year term to June 2025…

Dr Sharon Boyce, Chair, QDAC was excited to chair the Advisory Council for next three years.

“It’s important we continue the great work already achieved by the previous advisory council, to represent the diverse interests of Queensland’s disability community and the disability sector,” she said.

“The Advisory Council will provide specialist advice to government on a wide range of disability initiatives and issues, including new national and state disability strategies and the National Disability Insurance Scheme.” “

https://statements.qld.gov.au/statements/96074

Written by PDA’s TAS Associate Director, Tammy Milne

PDA’s talented Tammy Milne has written an informative article for “Tasmanian Times” around her recent mobility scooter accident , which involved a hospital visit or two and additional accessibility issues stemming from ”becoming more disabled”.

As usual, Tammy words not only invite us along on her journey navigating disability issues, but also draw attention to important topics and the need for action.

In this article, she challenges Australia’s apathy and existing roadblocks in providing adequate, accessible and necessary housing for our ageing population and disability community.

It’s a great read, so grab yourself a cuppa and head across to:

www.tasmaniantimes.com/2022/09/a-shower-a-shower-my-kingdom-for-a-shower/

Written by Mark Pietsch – PDA NSW Director

Chances are that if you have a disability, you know that it is going to be a central topic in your life. Though most avoid direct questions or expect an answer that focuses on the downsides. Hidden in all the discussion of barriers, are stories of overcoming.

Kids are the most blunt. They make me a laugh, asking their parents “why is that man using a ….(walking stick, wheelchair or walker)? He’s not old?” Usually followed by a parent shushing or quickly whisking them out of earshot. I’ve learned to welcome the questions and seek out opportunities to highlight that people living with a disability are people. We are neighbours, friends, family members, co-workers and even employers. 

I live with a musculoskeletal movement disorder and in addition found out that I have been living with Autism for the past 30 years. Apparently, I was one of the last people to realise I live with Autism. Colleagues in the disability sector just assumed I already knew. Though in hindsight I suppose spending your spare time reading the NDIS ACT or legislation isn’t exactly neurotypical. Though for me, it’s normal; my normal.

The National Disability Insurance Scheme (NDIS) is an insurance scheme that is available to support Australians with significant disabilities both current and in the future. It’s a pledge to help address the barriers in the lives of people that seek to have an ordinary life and to do things that most take for granted.

For me the NDIS enabled me to capitalise on my ability to fall through the cracks and find gaps in services by helping others to avoid the same issues. The NDIS funds me for 10 hours of support on the job a week helping me to overcome disability related barriers. Now as a result, I am the founder of Ability Links. I employ 12 people (most of whom have a disability or a family member with a disability) and support many people with disabilities as a registered NDIS provider.

Across 2020-2021 the NDIS invested $23.7 Billion into the lives of people living with a disability,  employing 270,000 people and returning an expected $52.4 Billion to the Australian GDP in ancillary benefits (Per Capita, 2021). This is in addition to providing dignity to people with significant disabilities, and the opportunity for greater self-determination. That is an astounding 2.25% multiplier effect resulting from indirect benefits associated with NDIS funded supports. The injection of funding into the care and health sector helps to provide stability for Australia’s most vulnerable people and employment security for a number of industries that have innovated to meet our needs, then providing the opportunity for Australia to enter the world market with inventions and businesses based in the sector. 

As a person originally hailing from a small country town in rural NSW, I know all too well how hard it can be to access health services away from capital cities. The NDIS has thrown a lifeline to people wishing for the lifestyle living in the bush brings, but also provides much needed resilience to embattled regional practices. With years of fire, flood, drought and a Medicare price freeze that has likely seen all three. It is a wonder that Allied Health still practices in rural areas – especially with strains to cost of living and fuel. The NDIS again provides stability, and the consistent support provided by allied health to the disability community means that they have a better chance of retaining staff. If they keep their doors open, someone is there the next time the local footy player has a sprain, or a workplace rehab visit may not mean a two-hour drive to the next regional centre. If rural practices close it isn’t just a handful of jobs lost, but also the goodwill, sponsorship and the money outside the local economy that is lost. This hurts everyone.

I was born with several malformations of the spine and a dodgy nerve that causes spasms. I’ve come to rely on Allied Health to keep me moving. For years this meant hours of travel to get support to manage my disability. At 17 I remember being told that by 25 I’d likely rely on a wheelchair. With few role models to tell me that a wheelchair or other assistive technologies are not to be feared, I felt like I had been punched in the guts. I was afraid of being different and of missing out. Today, coming to know the disability community and the intelligence, resilience, and potential within I’ve come to embrace my differences.

In the past I worked desperately to live in denial about my limits and disability, eventually resorting to training 3 hours a day and getting involved in youth work and fitness to keep up my routine. However, life happens. I ended up being crushed by a forklift attachment that fell on me and tore through the heel of my left foot. Unable to train and unable to care for myself, I was in dire straits. I ended up living in a motorhome for years, with little support or assistance from family. 

No running water, no septic and unable to really do a great deal on my feet. Eventually I was able to make the bus into a home, build a water filtration system and other modern conveniences all whilst seated. Eventually moving from regional NSW and youth work to study Psychology and Social Sciences at the University of Wollongong, where a scholarship from the Movement Disorder Foundation provided a much-needed boost to my opportunity.

Today I use a walker, a wheelchair, a mobility scooter or one of my many walking sticks to get around. These things bring me freedom and allow me to make the most of my ability safely. I especially like my sticks. A walking stick doesn’t have to be cold and clinical; I have many different types, shapes and handles. They are an extension of me. One question I’ve been asked is which leg is my bad leg? The answer is both. Whilst one was crushed, the other falls from under me due to a nerve that is impacted by my spine. Having the right assistive technology helps me to get on with my day safely. It may highlight me as different, but that isn’t necessarily a bad thing. Sometimes they act as a trigger for compassion. Whether you ask for it or not….

After moving to Wollongong and starting my first year at University, I unfortunately had my right leg drop out on some stairs, leaving my ankle on my left leg shattered when I fell twisting my foot completely backwards. I still regret not getting a picture. 

As a student of the social sciences, the word social capital is used a lot as a predictor of resilience. That is, the more people we have in our lives (friends, families, communities, acquaintances), the more likely someone is able to bounce back from a setback. Moving six hours from home, I didn’t know a lot of people. Outside of the NDIS there are not a lot of options for support. The NSW health system and community supports were limited. A house with stairs while using a wheelchair is not ideal, so I was mostly housebound. To go out, I had to get out of the wheelchair, then bum shuffle my way down the stairs with the wheelchair in tow, then get myself back in the chair. It wasn’t a great situation. 

The Makerspace at the University of Wollongong was a welcome reprieve for me. The “space” was truly one of the most inclusive communities I have experienced. I regularly visited in a mobility scooter to be welcomed by friendly faces and people welcoming working together to make their lives better. It was there I built the Kangaroo Crutch that helped me to get out of the chair by transferring my weight from my ankle to my knee. The concept of the Makerspace is something I love and my experience is what led to Ability Links creating a new Makerspace for the disability community of Wollongong.

I remember one situation, just after getting out of hospital. I was on campus in my chair. Being a new chair user, I had to use the strength of my triceps and go backwards up hills. One day I ended up getting a wheel stuck in the garden bed out the front of the bus terminal at UOW and quite literally catapulted myself into a bed of woodchips. I was mobbed by onlookers and people wanting to help. I felt extremely embarrassed, but it helped me to understand that people are willing to help and that it’s ok to ask. That said I distinctly remember an experience where an international student saw me struggling and took hold of the back of my chair and pushed me to the library. It was considerate of her, but I didn’t ask for the help, and she didn’t quite understand that I wasn’t heading to the library, but instead the Unibar. That experience highlighted to me that quite often people make assumptions as to the needs of people with disabilities. Here’s a tip: Ask before helping. The gesture may be welcomed, but just pushing me away essentially felt like I was being kidnapped.

Finding a semi accessible home for myself with good housemates was lifechanging. It meant being able to access the community. Eventually it led to a job helping others with a disability as a Support Coordinator, where I have found my experience, skills and past challenges have real meaning. Gaining support from the NDIS really opened opportunities for me that were just out of reach. For me it means greater safety and security. While the NDIS isn’t a direct payment to me, its investment in my life has meant not having to be in vulnerable living situations. It has meant being able to have access to the community, education and to take control over my future. It has given me equity and the opportunity to be at the same starting point as my peers.

The medical model of disability focuses on changing the individual. The social model of disability focuses on changing communities and the lives of people with disabilities. Most of us can’t and don’t want to be “fixed”. We want to be accepted and included. We have impairments that need to be addressed to be meaningfully included. With the NDIS and the connections I have built whilst supported to get out and about, I am better prepared to use my abilities to their full potential. With support I have been empowered to take my life into my own hands. 

I see how much the community of People with Disability has to offer, though we must help people move past shallow judgements and break stereotypes entrenched by the medical model. We; people living with disabilities are more than our barriers. Inclusion starts with intentional conversations. True equity comes from understanding and being heard. That means sharing our stories, speaking up and showing what we can achieve when our needs are met. I dream of a day where people are judged on merits, and people living with disabilities are represented in all areas of society, have a place at the table and have a meaningful say over how we live.

Unions, employer groups and civil society will be given a voice at the Summit. PDA contends that given the under-representation of people with disability in these groups, people with disability deserve dedicated representation. This is particularly important when this under-representation extends to the Federal bureaucracy and Members of Parliament.

“We call on our friends in the Union movement, employer organisations and civil society to support our call – we all deserve the opportunity to enjoy the dignity of work on equal terms”.

People of working age with disability are twice as likely to be unemployed as people without disability and, at a time of record low unemployment and severe skills shortages, now is the time to act.

There is a history of well-intentioned undertakings made at times of reform such as this. However, history has also shown that these undertakings rarely translate to better opportunities for people with disability. The lack of lived experience among decision-makers plays a large part in this.

Feel-good statements about the importance of diversity and inclusion and commitments to ‘do better’ might boost corporate reputations and provide good narratives for the media. However, they are meaningless to people with disability when nothing changes and no one is held accountable.

“People with disability have the skills, what we need is the opportunity and support to secure a job”.

Background:

Approximately 2.1 million working-age people are living with disability in Australia – only 53% are in the labour force, compared to 84% of people without disability. Some not in the labour force cannot participate due to their disability, but around 30% (or nearly 300,000 people) do have some desire to work.

The entrenched disadvantage, negative attitudes, stereotypes, and perverse social security rules that actively disincentivise looking for work suggests that the actual number available is likely to be much higher than 300,000.

A report by PwC estimates that almost $50 billion in GDP could be added to the economy by 2050 if Australia moved into the top eight OECD countries in employing PWD. The latest available data (2011) has Australia sitting at number 21 out of 29.

Signed for and on behalf of Physical Disability Australia by

ANDREW FAIRBAIRN SIMON BURCHILL

PDA PRESIDENT PDA GENERAL MANAGER

PDA invites other Australian disability organisations, people living with disability and those with a supportive interest in the disability sector to join in this call to ensure that people with disability are given a voice at the upcoming Jobs and Skills Summit (the Summit) in September.

For more information or to show your organisation’s support in this campaign, please contact Simon Burchill (PDA’s General Manager) via manager@pda.org.au, Natasha Nobay (Communication and Engagement Manager) or Andrew Fairbairn (PDA President) on 0466 526 605.

Sharon Boyce is PDA’s Vice President and QLD Director.

Accomplished in many areas (including but not limited to advocacy work, academia, journalism, community education and public speaking), Sharon’s creative side is another important part of who she is.

A passion for art and looking outside the norms, she loves to create beautiful art and bring her imagination to life.

In her new PDA vlog, she talks about her art and the way in which it has evolved more as her disability has created more limits on her life.

Well worth checking out on PDA’s YouTube channel:

https://youtu.be/2Gg_850h_T0

Whilst you’re there why not check out our other videos and subscribe to our YouTube channel.

Written by Sarah Styles – PDA’s QLD Associate Director

This year I was fortunate to win the Sector Innovation Award at the Developing Australian Communities awards gala. My business has just celebrated its second birthday and I am pleased with what we have accomplished in this short time given an overnight success is ten years. While we have much to do in becoming set up then established, we are currently writing a short film, 2 musicals and a series of picture books which will also be toured on stage in Auslan. All this while my body is a full time job. This required the right team of people which I didn’t get until age 43.

Over the years people have been amazed when I share my dreams and aspirations. They assumed i had already achieved a successful music career despite my struggles, which couldn’t be further from the truth. While being seen as enjoying the lifestyle I desired yet did not have is no compensation, it did present me with something I had not considered. How others saw me. Their assumed success was a win and that helped fuel me to do what I could in preparation for the day it was possible. No matter how much my disability affected my body and therefore mental health tempting me to give up, I had to hope for a future opportunity. I was not picky. I would accept what came my way. From age 16 I volunteered in the community to learn whatever I could. I said “yes” to any opportunity. Due to this, I had experiences that I had never dreamed of. They were one off so did not affect my health adversely and they were exciting. 

My disability had not been diagnosed during that time.  Neither had my medical condition, ASD, hearing loss or PTSD. This would not happen until I was 38. This lack of information Hindered any success attempted. It takes years after diagnosis to work out the best management regime for each condition. This then becomes the principal focus. The lack of support also was a hindrance meaning extra years were required to get on my feet.  

Fast forward to 2020 when the world was united by lockdown and the online access the disabled community asked for prior, yet deemed too hard and expensive was now suddenly available to all. The world opened for the first time in my life. It was thrilling to enter the arena as a participant. Often I wasn’t able to be a spectator! Would life begin at 41? This was the time where support started to become available. It was 2 years before the right team came togther. During the 25 years it took to arrive at my future, I had been taking advantage of all free webinars or local workshops run by my council in preparation. I knew with my necessary lifestyle only a small portion of that information was appropriate to me, but I trusted it would be enough and it was.  I leapt into action sure of myself and grateful for the required support. I had sought support my whole life of course and when it didn’t come year after year, I focussed on my wellbeing. It got to the point I didn’t believe it would come. The only option left was to find peace in my reality and make a new life. One possible with little to no help. 

The saying “If you work hard enough you will succeed” is shared a lot yet how much merit does it hold? Yes this character trait is desirable and necessary, yet no one can achieve  goals on their own. Regardless of whether we are poor, disabled,  part of any marginalised group, or well off with health, we all need the correct support to succeed alongside grit. That support tends to be sporadic for those in marginalised groups if available it at all. Once I was at peace with this, my mentality began to improve. I felt at peace. 

So what did it take to be successful? 

1 seeking opportunities and saying yes to whatever is available. 

2 accepting my reality to receive internal peace and happiness even if nothing changed. 

3 finding grit as nothing is achieved without it.

4 trusting the right support would come at the right time and trusting the process to get there. 

“When academic, author and disability advocate Sharon Boyce contracted COVID-19 in April, she and her doctor were scared about what might happen.

“I do have lots of issues with breathing, lots of issues with my health and [an] auto immune [condition], and I’m on high level cortisone and have diabetes,” she said.

The Toowoomba resident was being monitored in a virtual hospital ward and had antiviral medication delivered to her door by paramedics.

“It was very scary about the what if [of having COVID-19], but once I got the antivirals and started them, I didn’t have major problems,” she said.

“I did have issues with breathing and coughing, especially, which was very difficult for me with my neck, but the antivirals seemed to stop and calm that down and maybe not get as bad as what it may have done.”

Dr Boyce said more awareness was needed about the potential benefits of the medications.

“I think there really needs to be a lot more information out there about what antivirals are, what they do, how good they can be and what they can do for people to break down those barriers of fear.” “

To read the full article go to:

https://www.abc.net.au/news/2022-08-02/qld-covid-coronavirus-antiviral-medication-who-is-eligible/101288840

It’s a great watch.

Enjoy hearing from Fran and her fellow panelists (Angie Ballard and Cain Beckett) by going to:

https://players.brightcove.net/6015111615001/nTwZ5mi4b_default/index.html?videoId=6309652466112

PDA can earn $2,500 per webinar for 20 or more survey responses from each webinar. If all 5 webinars get 20+ survey responses that equates to $12,500 which will go a long way to help PDA continue its work standing up for all Australian living with physical disability.

You can help PDA and go in our Hoyts’ draw by simply watching a recording of one (or more) of our informative and though-provoking webinars and then completing a survey.

Simply head across to the Physical Disability Australia YouTube channel (https://www.youtube.com/channel/UCMyTzhTbs2oLH-WZR18zX2Q/videos?view=0&sort=p&flow=grid) and click on one of the webinars we have posted there:

• Elle Steele’s “Starting a Small Business in Australia”
• “NDIS Plan Self-Management”
• “The NDIS Quality and Safety Commission”
• “You CAN Ask That”
• “EmployABLE: Equal Skills = Equal Opportunity = Equal Pay”

When you have watched one, complete the short survey linked in the description notes under each webinar’s description.

Feel free to complete a survey for each webinar that you watch.

We also encourage you to subscribe to our YouTube channel whilst you’re there.

Entries for our Hoyt’s gift cards close at 5pm on Friday 5th August 2022, with winners chosen by random generator and announced and notified on Monday 8th August.

This competition is only open to Australian residents.

You can read PDA’s Position Statement below:

“The National Disability Insurance Scheme Act 2013 (NDIS Act) is the legislation which establishes the National Disability Insurance Scheme (NDIS) and the National Disability Insurance Agency (NDIA).

It also sets out, amongst other things, the objectives, and principles as to how the NDIS will operate, how an individual can access the NDIS and become a participant, how the participants plan will be developed and processes for internal and external review.

The NDIS Act also sets out the governance arrangements for the NDIA including its CEO, Board, Independent Advisory Council (IAC) and Actuaries.

The NDIS has been operating Australia wide for the past 9 years supporting people with disabilities to live ordinary lives, supporting people to access services and supports, supporting people to gain meaningful employment and generally increasing quality of life.

The NDIS is, essentially, a scheme for people with disabilities, but we have yet to see people with disabilities gain Senior Management positions within the NDIA. We have seen people with disabilities positioned on the NDIS Board and the IAC, but not into those senior roles.

PDA believes that the NDIS should have people with disabilities in those roles, to not only increase the representation, but to bring real life experience and understanding of being a person with a disability into the Agency that is supporting us.

We encourage the Government to do their due diligence in recruiting a new CEO for the Agency and make a positive step to rebuilding the trust of people with disabilities by actively seeking out a person with a disability for the role of CEO.

PDA invites other Australian disability organisations, NDIS participants, disability supporters and providers to join in this call for improved NDIA CEO and Board representation, participation, inclusion and input from people with disability.

For more information or to show your organisation’s support in this campaign, please contact Simon Burchill (PDA’s General Manager) via manager@pda.org.au.”

Tuesday 9th August at 6:30pm AEST

There are an estimated 4.4 million Australians living with disability, and approximately 93.1% (or 4.1 million) of these were acquired sometime after birth.

Whether acquiring lifelong disability as the result of an injury, developing health or genetic condition, due to illness or medical complication, this move to a new way of life can be challenging and uncertain.

Finding information, support and ways to best live a new way of life can seem overwhelming.

From understanding your rights and entitlements, accessing resources and tools, and self acceptance, this webinar will  give you an insight into the disability journey of three people who acquired disability later in life and continue to ensure that they live their best lives.

On Tuesday 9th August at 6:30pm AEST, PDA will be running a webinar to provide you with information, advice and personal stories around successfully transitioning to this new chapter of life.

To register for this FREE Webinar, go to:

https://us02web.zoom.us/webinar/register/WN_FxEVffunR3-ROuTqEfYYaw

After registering, you will receive a confirmation email containing information about joining the webinar.

We look forward to you joining this important and informative event.

Written by Tammy Milne (PDA TAS Associate Director) and published by ABC News.

When Tammy Milne contracted COVID-19, she said she was “shaken to the core”.

Ms Milne has arthrogrophosis multiplex congenita, which affects her legs. She also has issues with breathing and swallowing.

She uses a wheelchair and has a support worker for several hours a day and overnight.

She is one of many Tasmanians for whom life will not return to “normal” when the state’s public health emergency declaration ends on Thursday night.

Three months ago, Ms Milne was in Hobart visiting her daughter when she contracted COVID-19.

She was staying in a hotel, and, once she tested positive, was unable to receive room service.

Her support worker was unable to help her, and with her daughter also COVID positive, Ms Milne said she was “trapped in a room by myself without any support”.

“It was very traumatic … I was isolated and pretty much in despair,” she said.

Ms Milne organised through the disability COVID hotline to be transported back home to Devonport in the state’s north-west where a support worker stayed with her through her seven days of isolation.

Three months on, Ms Milne said she has also contracted two other viruses, one of which required hospital treatment.

“I think if I got COVID again, I’d be really lucky to survive, and it’s a reality that it will come back again,” she said.

To read the complete article, go to:

https://www.abc.net.au/news/2022-06-30/covid-still-a-problem-for-immunocompromised/101194310?utm_campaign=abc_news_web&utm_content=link&utm_medium=content_shared&utm_source=abc_news_web

Following its election win, the Australian Labor Party has reiterated its commitment “to ensuring that no Australian with a disability is left behind”.

The Hon. Bill Shorten MP’s assigned portfolio as Minister for the NDIS National Disability Insurance Scheme has been widely applauded and appears to be a significant move in the right direction for an Australia working to look after its disabled population.

This overhaul includes review of the NDIA (National Disability Insurance Agency), steps being taken to get the NDIS working properly and ensuring that disability is “no longer an afterthought”. Reassuringly too, steps are seemingly being put in place for policy to be evidence based and those actually reliant on the NDIS being given a place at the co-design table.

However, whilst the NDIA has certainly been a hive of promising activity since our new government took office, there is still a glaringly incongruous demographic in the way that the scheme is being run and managed.

With 1 in 6 Australians living with disability and with rates of disability being shown to be on a rising trajectory, it is crucial that the NDIS addresses the need for representation and inclusion of scheme participants and those with lived disability experience on its Board, Executive and in the role of NDIA CEO.

In the same way that senior roles within indigenous organisations are reserved for applicants of Aboriginal and/or Torres Strait Islander descent, policy must be put in place to ensure that “the NDIS puts people with disability at the centre of the Scheme and includes families, carers, service providers and workers” (wording taken from the ALP’s own website).

But this should just be the beginning of necessary reform in our country.

In an SBS News article, it was highlighted that, of the total 227 parliamentarians today, only one person (or less than half a percent) presents a visible disability – in the form of WA Greens Senator Jordon Steele-John.

Whilst our new parliament embraces the diversity and beauty of our country, this representation of disability is certainly not something to be celebrated.

https://www.sbs.com.au/news/article/australias-next-parliament-has-been-declared-theres-only-one-politician-with-a-visible-disability/a24jj4fow

PDA’s TAS Associate Director, Tammy Milne, has written another interesting article for The ”Tasmanian Times”.

Check it out by going to:

www. tasmaniantimes.com/2022/06/rural-health-struggle-to-service-people-with-disabilities/

Did you miss our recent “EmployABLE” Webinar?

It was a really popular presentation. However, we had a lot of emails and calls from many of you were not able to watch it live, and many who did, asking for it to go up on on PDA’s YouTube channel.

Great news!

Now you can watch this incredibly informative and helpful webinar online and learn about the support and opportunities available to assist PWD step onto and advance up the employment ladder.

So, whether you’re looking to enter mainstream employment, thinking of starting up your own small business or just wanting to have a better understanding of employer obligations in employee recruitment and reasonable workplace adjustments- this webinar is a must view.

PDA’s incredibly knowledgeable panel has many years of lived experience between them and present a valuable tool for anyone with an interest or need to better understand Australia’s employment sector and the issues particularly relevant to people with disability.

Paul Williamson – Researcher
Mark Pietsch – CEO of Ability Links and Disability Advocate
Tammy Milne – Journalist and Disability Advocate
Sarah Styles – Owner of Wheelie Good Productions
Sharon Boyce – Disability Advocate, University Lecturer, Author and Education Consultant

You can view it by going to:

https://www.YouTube.com/watch?v=crxJTZjOkU4

Whilst you’re there please make sure that you subscribe to our YouTube channel.

After you have watched this webinar we also ask you to take part in out short survey by going to:

https://www.surveymonkey.com/r/2JV7MFB

Feedback from this survey will enable PDA to present future webinars of interest and importance to our Members and Australia’s disability community.

If you would like to become a part of the PDA community and be kept up to date with future events, news and opportunities please sign up for FREE PDA MEMBERSHIP by going to:

www.pda.org.au/membership/

PDA’s TAS Associate Director, Tammy Milne, has had an article published in the “Tasmanian Times” about her wheelchair journey.

It’s a great read.

You can check it out by going to:

A Wheelchair Journey

Our next FREE “EmployABLE” Webinar will be run on Wednesday June 1st and we’d love to have you join us.

In this informative webinar, our Panelists will speak about support and opportunities available to assist PWD in stepping on to and advancing up the employment ladder.

Whether you’re looking to enter mainstream employment, thinking of starting up your own business or just wanting to have a better understanding of employer obligations in employee recruitment and reasonable workplace adjustment – this Webinar is a must.

To register for this webinar, go to:

https://us02web.zoom.us/webinar/register/WN_lwVemhJcQQSUM030J3vmgg

After registering, you will receive a confirmation email containing information about joining the webinar.

If you have any questions around employment that you would like the Panel to answer, please email promotion@pda.org.au or ask a question via the online chat during the webinar.

We look forward to your joining us for this interesting and useful presentation.

If you’re not able to join us on the night, post-Webinar this presentation will be published to the PDA YouTube channel (https://www.youtube.com/channel/UCMyTzhTbs2oLH-WZR18zX2Q).

Whilst you’re visiting our channel, please subscribe so that you’re kept informed of other presentations.

Once you have watched this (or any other of our webinars), we encourage you to take part in out short survey by going to:

https://www.surveymonkey.com/r/2JV7MFB

Feedback from this survey will enable PDA to present future webinars of interest and importance to our Members and Australia’s disability community.

Did you vote at an AEC Polling place either as an early voter or on Election Day?

If so, we would really appreciate your help to ensure that Australia’s democratic process is truly accessible to all Australians living with disability.

We’d love to hear just how accessible your chosen location was and whether reasonable adjustments were in place to support your needs in placing your vote.

This will provide us with a better understanding of issues that are and aren’t being adequately addressed to make future voting in person possible, stress free and a choice for those who require additional consideration and support.

We will then provide AEC with our findings to work towards improved polling place accessibility moving forwards so that Australia embraces the importance of everyone’s vote.

To take part in this important process, please provide your feedback in our short survey by going to:

https://www.surveymonkey.com/r/TSHXNH8

Many thanks for your help.

A recent Disability Support Guide article (https://www.disabilitysupportguide.com.au/talking-disability/unemployment-rates-released-but-not-for-people-with-disability) has highlighted the Australian Bureau of Statistics’ exclusion of unemployment rates of people with disability in their April Labour Force Participation figures (https://www.abs.gov.au/statistics/labour/employment-and-unemployment/labour-force-australia/apr-2022).

In spite of disability employment being a topic of discussion and (supposed) action, this statistical ostracism does little to make people with disability feel as though they are included in the conversation.

With unemployment and underemployment rates of people with disability much higher than national figures, national statistical collection on this topic has not been actioned by the ABS since 2018 with the release of their Survey of Disability, Ageing and Carers (https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release).

These findings revealed

an unemployment rate of people with disability of 10.3% and more than double the period’s comparative rate for people without disability which stood at 4.6%, and

that just 28.3% of people with disability of working age were in full-time employment – compared to 54.8% of people without disability in the same age group.

If statistical collection and analysis excludes 20% of Australia’s population (in that of our disabled citizens), how is it truly a measure of our country’s employment numbers and how does it not perpetuate feelings of exclusion and discrimination for our country’s largest minority group.

If the Australian Government is committed to ensuring “inclusive workplace cultures where people with disability thrive in their careers” (https://www.dss.gov.au/disability-and-carers/disability-employment-strategy) through initiatives such as the Disability Employment Advisory Committee (DEAC) and Employment My Ability, surely there needs to be greater attention on the bigger and comprehensive picture so that all stakeholders can be better equipped and truly committed to bringing actual positive change!?

In PDA’s push to ensure that Australia’s democratic process is accessible to all Australians living with disability, we would appreciate your feedback on your experience on voting at an AEC polling place as an early voter or on Election Day.

This will provide us with a better understanding of issues that are and aren’t being adequately addressed to make voting in person possible, stress free and a choice for those who require additional consideration and support.

We will then provide AEC with our findings to work towards improved polling place accessibility moving forwards so that Australia embraces the importance of everyone’s vote.

To take part in this important process, please provide your feedback in our short survey ONCE YOU HAVE VOTED AT A PHYSICAL POLLING PLACE LOCATION.

To access this survey please go to:

https://www.surveymonkey.com/r/TSHXNH8

Many thanks for your help.

Written by Robert Wise – PDA VIC Associate Director

Firstly, I’d like to point out that there is certainly room for improvement to the NDIS. Everybody’s circumstances are different, always evolving and so plans cannot be simply formulaic. As a result there’s a lot of negative talk around the NDIS. However, I believe that we need to defend the NDIS. My blog post talks about the way in which I personally benefit from the NDIS.

In 2003 I became an amputee with one of my legs removed with an amputation known as a Hip disarticulation. As a result my life changed. I lost my job and I was unable to carry out household tasks such as vacuuming, mopping, cleaning, changing, washing bedding etc – the tasks that pre-amputation were carried out easily and without thinking.  

As I am single and live alone, with family scattered all over the country, the only help I could access was a 1.5 hour visit from my local council home help crew to help with these tasks. There was no help for social activities, shopping and other tasks that I needed.  Without the help of my parents for other tasks and getting me to some of my medical appointments life was difficult. I purchased a mobility scooter with my own money to help me get around in the community, to visit my local Men’s Shed and go shopping etc. 

In 2018, with the help of my GP, I received my first NDIS plan. It was a very basic plan with 12 months funding for domestic help in the home once a week, once a fortnight visits to do lawn mowing and some gardening and 1.5 hours a week for a support worker for social activities. Some funding was also provided for occupational therapy and physio. Also included was funding for a new Manual Wheelchair and a ramp into my backyard, which enabled me to go outside in my wheelchair independently to enjoy a coffee etc in my backyard (which can be hard to carry using crutches). 

The initial 12 month plan also allowed me to purchase a new lightweight, foldable manual wheelchair complete with tiedown points. This was a great help as my previous wheelchair did not have these, creating problems with one country Victoria coach refusing to carry me without these fitted on my wheelchair. On such occasions, I had to struggle out of my chair, up the bus steps and into a seat. 

My next plan included a very good report from my OT, which included funding for my ramp into my backyard. This incredible home modification was completed in between one of the many COVID Melbourne lockdowns. Additional funding was also granted for a support worker to help me with some of my social activities, shopping etc – also providing me with welcome company between my planned Men’s shed outings and other activities. 

I also received funding for increased occupational therapist hours that included preparation for a quote for a power assist device for my wheelchair. This was approved after a plan review and now I am a proud owner of a smooth one-power assist attachment for my manual wheelchair. This makes it much easier for me to use the chair when navigating steep hills or when fatigue sets in. 

The NDIS has also opened up my options socially and I now have help to play in a Tenpin Bowling league once a week.  I am also now able to enjoy trips to the park and beach (boardwalks only) with the help of a support worker, my new manual wheelchair and power assist. 

I also have some funding for One-on-one gym sessions to help maintain my fitness levels, with an occasional day in a group activity where I can enjoy fun activities like fishing and visiting zoos and other places of interest. Please watch out for up-and-coming videos of my Assisted Technology and home modifications. 

I would like to close by saying, that without the NDIS I would not be living the full and happy life that I am today.

Ratings are:

• wheelchair accessible
• assisted wheelchair access, or
• not wheelchair accessible.

Clicking on the rating listed against each polling place will give you more information about specific accessibility features.

To find the most suitable place for you, either before or on Election Day, go to:

https://www.aec.gov.au/election/voting.htm#start

For more information around the aec’s commitment to ensure that Australians with disability or mobility restrictions are able to enrol and make their vote count, go to:

https://www.aec.gov.au/assistance/

Tammy Milne talks to the ABC about the virtual care she received under COVID@home in Tasmania.

https://www.abc.net.au/news/2022-04-27/covid-at-home-tasmania-extended-to-flu-patients/10101646

Written by Tim Harte – PDA VIC Director to Get Young People on Board – not Bored

As a Disabled Peoples Organisation (DPO), Physical Disability Australia (PDA) lives the ethos of ‘nothing about us, without us’ – people with disabilities informing advocacy and leading the change to enable every Australian living with a physical disability to realise their full potential. 

Within PDA, I see the value of lived-experience with every decision we make and the real-world outcomes achieved through our advocacy. With charities, government bodies and corporations(entities) that deliver services for and interact with, marginalised and underrepresented communities, it is both an ethical obligation and a practical necessity for the work of these entities to be informed and shaped by members of these communities, and for meaningful participation of community members to occur within decision-making structures. 

Commonly, meaningful participation within decision-making structures of entities involves reference groups, comprised of members of a marginalised community, specifically focused on aspects of the entity’s interactions with a specific target group. Reference groups are great for informing operational aspects (of entities) e.g. advising on service delivery. However, input from reference groups is not sufficient. It is critical for effective, appropriate and inclusive decision-making that people with disabilities are within high-level, decision-making structures (Boards & Board committees) & staff members, with relevant, lived-experience, are employed by the entity to ensure recommendations and input from reference groups are implemented and given value in the entity’s strategic priorities. 

As a young, disabled person who serves on 3 Boards, I am part of the change involving people from marginalised and underrepresented communities, with lived-experience, being part of and making a difference through active participation in high-level, decision-making structures within entities. Being part of the change is not an easy experience. It takes grit, a thick-skin, patience, determination and dedication. More focus is given to getting people with lived-experience on Boards, but the next, and equally important, step is change and action within entities to ensure people from marginalised and underrepresented communities can meaningfully participate and contribute within the Board environment. It is the challenge to ensure the voices of young and marginalised people are heard and considered within Boards, and we are not left feeling frustrated, undervalued and bored by inaction.

My experience, as a young person on Boards & Board Committees in a diverse range of sectors, has gotten me thinking about what it takes to get young people meaningfully involved in governance. Not just tokenistically to meet some predefined quota or societal expectation, but in a meaningful, valuable and respectful way. My recommendations for entities (charities, government bodies & the private sector) to implement to ensure young people on their Boards are supported to meaningfully participate and contribute, and some recommendations to young people to ponder when considering applying for Board positions, are itemised below. 

Support

Properly supported, appropriately experienced young people can learn greatly from Board service and considerably contribute to informed decision-making within the Board environment. 

For entities:

a) Buddying: Many Boards ‘buddy up’ new (young) Board members with existing Board members to educate them about Board processes & conduct, and most importantly to support them to feel more secure within the Board environment and enhance their ability to contribute. Things to consider include:

i) Buddying is often a short-term, ‘on-Boarding’ mechanism to provide initial support for new Board members rather than a continued, support mechanism. It is important for young Board members to have a buddy acting as a support for the duration of their time on a Board. 

ii) Allocation of buddy partners should never be done without discussion with the young Board member and ideally their buddy should be their choice. Ideally, following their first Board meeting, young Board members can be asked who they would like to buddy with. Prior to allocation the Board Chairs/Presidents should act as a support. 

iii) Buddy allocation should not be regarded as permanent. Young Board members get to know different Board members better throughout their time on a Board and may benefit from support of different Board members for different matters. Also, Board members may change, hence, buddy allocation needs to be flexible. 

iv) Some Boards refer to buddying as mentoring, which can suggest a paternalistic relationship which may unintentionally intensify the power dynamic imbalance between existing and new young Board members, reducing open conversation and reducing the benefits of buddying. 

b) Employee Assistance Programs (EAPs) are confidential external counselling programs offered to employees by employers. Not all entities have EAPs. However, many (particularly those involved in service delivery or areas involving direct interaction with the public) do have EAPs. Board members need to be able to access EAPs, yet many Board members of charities serve voluntarily and cannot access EAPs as they are not regarded as staff. Board members, during their first term, will more than likely discuss psychologically distressing matters or be in psychologically distressing situations while serving on a Board. It is important, both for the health and wellbeing of Board members and Board culture, that Board members are supported through an EAP to confidentially deal with the impact of such experiences with qualified healthcare professionals. For young Board members, who often have small and less established support networks, EAP access is a necessity.  

c) Training: Training is a major part of supporting young Board members. Training has been covered further under the capacity building recommendations. 

For young people: 

a) Personal support: To ensure young people’s wellbeing, they should not serve on Boards unless they have a stable close support network. Young people need at least 2 people they have known for 2+ years, who have supported them in the past, to support them during their Board service. The reality of being on Boards, as a young person, is that it is not a smooth process. There will be ups and downs, and sometimes nights (after meetings) when you cannot sleep. For your own well-being you need people who know you and can reliably support you. I am lucky to have 2-4 people (2 family and 2 friends), with similar political views & shared values, who support me. 

Capacity building (training)

Training serves to build the capacity of young Board members to contribute and build the capacity of all Board members to implement best practice governance and create a safe, efficient, and effective Board environment. I prefer the term ‘capacity building’ over ‘training’ as it acknowledges the exisiting capacity within each Board member. Everyone has skills, experiences and expertise from their life, work & other voluntary roles. Capacity building needs to recognise this and build on existing capacity and strengths.

For entities:

a) Assessing existing skills: Quantification of Board member’s current skills and knowledge areas is the first step to building the capacity of the Board and Board members through tailored & relevant capacity building. Commonly, skills matrixes, sometimes extended to include key knowledge areas of an entity’s work, are used to quantify (measure) different skills areas and identify weaknesses or areas where capacity can be enhanced within the Board team. 

i) Quantification: To be effective, a skills matrix must be designed to prevent ambiguity in skill (or knowledge) quantification. Clear and detailed guidance must be provided around the meaning of a low, medium or high rating in a skill/knowledge area. Skills matrix quantification needs to take a similar approach to key selection criteria rankings in job applicant short listing. Skill matrix scoring scales need to be at a minimum 1 (no knowledge) to 10 (this is my profession); 1-3 rankings are meaningless. Scores need to be clearly connected with levels of understanding and proficiency -e.g. 5 (I watched a webinar on this topic), 6 (I went to a conference or did a short course on this topic), 7 (I have done an elective at University on this topic), 8-10 (I am professionally qualified in this area and have worked or work in this area). 

ii) Use of skills matrixes: The skills matrix should be used by Board members/Chairs/Training Committees to identify and plan tailored, relevant training for individual Board members, as well as, identifying weaknesses in professional experience within the Board that may be remediated through co-opted Board members.

b)  Sourcing training: Quality, professional capacity building is essential. 

i) Inhouse training: Inhouse training is training performed by staff or Board members and has limited application and benefits. An over-reliance on inhouse training can create an unhealthy power dynamic between Board & staff members – particularly young Board members. This can also, unintentionally, recycle current, inappropriate, Board culture and practice and perpetuate unhealthy power dynamics; in turn preventing positive improvement and real, continuing professional development for every Board member. Wherever possible, external agencies should be sourced for well-planned capacity building.

ii) Sourcing appropriate capacity building: Separating the ‘waste of money’ webinars, conferences and courses from ‘value for time & money’ capacity building options can be time-consuming and difficult. I have found personal recommendations are best. I have done 4 different governance webinars/short courses – 2 free & 2 paid and would only recommend two of them for their content, relevance, cost and value. It is not difficult to find free training for charity & community organisation Board members, but it is difficult to secure a free booking with short notice. Subscribing to alerts from the Australian Scholarships Foundation, which provides regular updates on free offerings from leading training providers, is an excellent way to find relevant opportunities for Board members. 

c) Relevant Capacity Building: After assessing existing skills, relevant tailored training for individual board members should be identified. Last year on a Board skills matrix, I scored lowest in the knowledge area of ‘Housing security’ and in the skill area of ‘Finance & accounting’. In response to these scores I went to an online conference on the topic of homelessness & housing security, and completed an elective subject at university on accounting, building my capacity in both these areas. 

Identification of relevant training opportunities should be a formalised, transparent process within Boards and should combine information gathered from assessing existing skills with preferences of individual Board members to create a mutually agreed capacity building plan and schedule. It is important that training should not be onerous and can fit in with existing commitments and career plans of young Board members. The elective I undertook last year, counted as a credit point in my course (i.e. I was going to do the work anyway as it was relevant, and contributed to my career plans).

d) Tracking & Feedback: Tracking training completed by Board members is important to ensure accountability of mutually-agreed commitments, evaluate capacity building of training (i.e. how does training result in enhanced skill matrix) and, most importantly, to get feedback on completed training so training providers/courses can be recommended (or not) for Board members in the future. Due to the constant requirement for upskilling & refresher training and for building and maintaining the capacity of the Board, it is best if training is tracked in specific time brackets (e.g. Jan-June 2021) for each Board member.

For young people: 

a) Find your own capacity building: Some Boards will view training as an annual webinar for the whole Board. For young Board members, who commonly have different skill & knowledge gaps to the rest of the Board, this approach is not ideal. Don’t be scared to search and apply for your own training opportunities. A lot of conferences offer free scholarships and free high-quality training opportunities are also available. Apply early for these opportunities as spots fill up fast. 

General recommendations for young people: 

a) Know the commitment you are making: Serving on a Board takes time. Make sure you read through the position description of the Board role, note down the meeting frequency, committee obligations and other time commitments if stated. For me, the time it takes to thoroughly read Board papers has been the largest time commitment. Some Boards will have a regular amount of work, 20 pages of reading/meeting, others are more variable (20-60+ pages of reading/meeting).  Generally, for Board members serving in their first year, the time commitment of being on a Board is 20% greater than the amount stated in a position description.  

In conclusion, don’t be afraid to put your hat in the ring, but be realistic about your current capacity and experience, be prepared to undertake additional training to build your capacity and be prepared for a lot bigger time commitment than is suggested.  As a DPO, PDA is a great example of valuing the voices and input of people with diverse lived-experience. PDA actively incorporates intersectional lived-experience in decision-making and ensures young people are listened to and valued.

Written by Paul Williamson – PDA ACT Associate Director

After eighteen months of avoiding COVID-19: joining the work from home revolution, avoiding contact with others, limiting outings, strict hand-washing and mask-wearing routines, my luck ran out in January, and I tested positive. I decided to travel interstate to visit family who I had not seen since the beginning of the Covid outbreak and, despite being extremely careful, it was not careful enough.

My symptoms were mild, much like a nasty winter cold, and I only learnt it was COVID when trying out one of the incredibly elusive rapid antigen tests (RAT) that I managed to get while my local pharmacy was re-stocking.  I take several medications, including one that supresses my immune system and increases the risk of infections – including COVID-19.

My recovery took much longer than the 3-5 days advised by my doctor but, eventually, I tested negative after around 4 weeks. 

Wait, what the…

I never fully got back to my baseline of good health, which had consequences when I again tested positive for COVID-19 at the beginning of March. I was triple vaccinated by this point, had already had COVID once and falling ill again was one of the last things I expected. I figured that vaccination plus having the antibodies of a recent infection would protect me for at least a few months.

Symptoms this time were severe, including breathlessness, debilitating fatigue, extreme difficulty concentrating, a total loss of my sense of taste and smell, and less frequently reported symptoms, including painful teeth and gums and insomnia.

While testing negative a few days ago, I’m still unwell and suffering quite bad fatigue and a general feeling of malaise. 

It does happen

While anecdotal evidence suggests an increase in the number of people re-infected, there is no publicly available data in Australia at a national level to confirm this (as of March 2022). Research from the UK cited by Professor Mike Toole from the Burnett Institute supports anecdotal evidence. That research found that whilst in November 2021, only one per cent of new cases were reinfections; with the emergence of the Omicron variant, this figure had climbed to 14 percent by March 2022.

My concern (apart from a COVID-19 hat trick) is that some of the symptoms will persist, so called long COVID – a condition now recognised by the World Health Organisation (WHO). I’ve burned a lot of my reserves this year, and keeping up at work while parenting a teenage child and managing my health and other commitments – all while suffering ongoing fatigue and ‘brain fog’, is daunting.

I saw a great meme the other day about vaccination, something like: ‘you can put your faith in modern medical science, or risk dying like a medieval peasant’, which sums it up quite nicely, in my opinion. Going through COVID-19 unvaccinated, based on my experience, is not something I would like to have done. 

‘We’re all in this together.’

During the Coronavirus pandemic, I have found the support available for people with disability variable. Despite the (often ad nauseam) pronouncements that “we’re all in this together”, that isn’t always how it felt.

Despite being supposedly at the head of the queue for vaccination, this isn’t how it played out for many people with disabilities who had to wait much longer. They were crowded out by others at vaccination centres or could not receive the vaccination due to living arrangements or mobility. Then we had difficulty getting (and the cost) of RATs, the requirement to queue for hours for PCR tests, the scarcity of support workers, the anxiety about introducing COVID-19 into the home, not to mention the added complexity of simple things like getting groceries and medication. 

While I managed to get by, having resources including calling on family and friends, I know others who had a much tougher time. Those on fixed incomes, not as adept at dealing with the bureaucracy, without family and friends to call on, were often left feeling like a cast member in the Hunger Games.

People with disability so often feel the brunt of failures in planning, policy development and program delivery during national disasters or other upheavals. The Disability Royal Commission (DRC) expressed concern about the issue as far back as March 2020, reinforcing its concerns in February 2022 with the outbreak of the Omicron variant. The impact of COVID on people with disability will undoubtedly provide fertile content for the final report of the DRC, due in September 2023.

People with disability are resilient and resourceful; they have learnt (often the hard way) they have to be. It would be nice, especially amid a global pandemic, if their very survival didn’t depend on it.

Written by Tammy Milne – PDA TAS Associate Director

My name is Tammy Milne. I had covid and I survived. For over 2 years now I have avoided the insidious virus like the plague! I’ve taken all the precautions. Triple vaccinated, wear a mask, hand sanitise, limit my contact with the outside world and limit who comes into my home. I have made my support workers all take Rapid Antigen Tests before commencing a shift and I have let go two workers who would not get vaccinated. The longest I spent in self isolation was 49 days. Our state government took protections very seriously and shut our borders early and for an extended period. But then the border opened on the 15th December and a tidal wave of covid washed over our little island state.

For almost two years our little state was covid -19 free and then the flood gates opened. Cases swept through towns, schools, business and homes. After being locked up at home and missing my daughter so much, she is away at University in Hobart, I booked a support worker, we packed the car and the dogs and headed to an AirBnb in Hobart. For the first five days we did outside activities to lessen the risk. We took walks, ate ice-cream on the waterfront and enjoyed the beautiful historic Battery Point, marvelling at the old buildings.

But all our safety protocols were only as good as the weakest link and unfortunately my daughter was mine. After 6 days in Hobart she tested positive to covid-19 which meant I was a close contact. By this stage I had sent my support worker home with the dogs and was relying totally on my daughter and casual support worker for support in Hobart. I had also moved to an inner city hotel to be closer to my daughter.

On the Wednesday we went out for dinner, she then took me back to the hotel and got me settled for the night and left. At 11.30pm she FaceTimed me and said that she was positive. What does this mean for us? I, at this stage was a close contact and so had to go into quarantine and rely on my casual support worker whilst my daughter was out with covid. Things started falling apart rapidly from this time on. My support worker said they did not feel comfortable supporting me as I was a close contact and they felt at risk. I assured them that with PPE, public health said that they were safer working with me than going out to the shops. I rang their union to get advice on where they stood. The Health and Public Sector Union stated that they follow and support health protocols and encourage their members to follow all mandates in their workplaces. Still they (my support worker) declined to work with me.

I was stuck! I was stuck in a hotel and couldn’t get room service into my room as I was in quarantine. They could leave food outside my room but, because of my disability, I could not physically lift the food from the floor outside. I was also unable to shower. I was stuck and stinky and hungry.

One of the management team in the hotel broke hotel protocol and brought me up some tea and toast. Her rational was, ”I have had covid only two weeks ago so I’m immune and just couldn’t leave you up here like this. It is just not moral.”

So this dire situation began to turn around when I rang my state based dedicated disability covid helpline. This happened around 1pm. I told them of the situation and thankfully the seriousness of this predicament was understood and they acted with understanding and empathy.

I received multiple phone calls throughout the day as they worked out a plan for me. Many solutions were mooted; go to hospital for the night, go to a covid care facility or go home. I wanted to go home. And so at 7.30pm a nurse from the covid hotel was dispatched in full PPE to shower me, pack my bags and hunt down some food for me as I hadn’t eaten since the tea and toast earlier in the afternoon. At 9.30pm a patient transport taxi with two lovely young volunteer ambulance folks with the St Johns Ambulance arrived, again in full PPE, to collect me and start my long journey home. I arrived home at 2am Friday morning. My support worker Michelle was in the house already to take over my care. It was deemed she was not a close contact but, as a casual contact, was given permission by the health dept to provide care for me for the next 7 days of isolation. I fell into bed and slept.
I woke the next morning feeling a bit rough and did a Rapid Antigen Test. I went from being a close contact to a positive case just like that!

After registering my positive Rapid Antigen Test, I was called by the state health department Covid@home nurse and triaged. Now going back a few months I had been working with a respiratory physiotherapist and she was concerned that if I caught covid the situation could be dire – as, like many wheelchair users, I have lower functional diaphragm muscle which is necessary to produce a productive cough and remove the risk of pneumonia. So armed with this information i was called by the Covid@home doctor who hit my covid infection hard with precautionary antibiotics, prednisolone, a preventer puffer and ventolin. I won’t lie. The first three days I felt rough -with a sore thoat, a snotty nose but no fever or temperature. I was lucky, have recovered well and am now back swimming and basically enjoying my new freedom of immunity for the next few months.

It turned out pretty well really, but there are some issues that need to be recognised. The number one being support workers and their duty of care to clients. And number two being the issue around emergency support workers in times of need.

The duty of care of support workers is to be professional, know and understand public health orders and to use and be responsible for PPE and their own safety. It is one thing to be a good support worker when times are good but, when times turn pear shaped, abandoning a client is not on! Secondly emergency support workers need to be readily available. I self manage and was so fortunate to have a support worker practically sacrifice herself to stay at my home and look after me for seven days. She was paid accordingly and it must be pointed out did not catch covid from me in the seven days. She still hasn’t had covid. She went above and beyond and her professionalism and understanding of duty of care are exemplary. However, if she had been unavailable, what measures could I have employed? Where could I find skilled workers who would take on 7 days of isolation? This is a direct question to government health departments and the NDIS. In times of need we need help and the NDIS needs to step up with solutions.

Regarding support workers in the field now, how do we instill in our workforce these moral and professional obligations to their clients? Better training, a minimum standard of education and some direct specific workforce training for support workers around their obligations and duty of care. I would suggest nothing lower than an associate diploma. Workers can work toward this on the job, but have a time frame around completion. Secondly we should pay them better. Insecure and casual work does not produce the needed professional standing that this work must aspire to. To coin the old adage, “you get what you pay for”.

In conclusion, my covid experience has exposed the best and worst in our system. The worst being the gaps in the system that do not cater for emergency support workers and the lack of training and guidance some support workers have around duty of care. However, the best far out way the worst. The care provided to me by the Covid@home team and the Disability helpline was fantastic. I was considered as an individual case and a person with real fear and distress and not just another case. I was heard and I felt very well cared for. I am thankful for the lovely patient transport girls who took on overtime to get me home and lastly my support worker Michelle. My situation is not an anomaly but a point in time and space that maybe be replicated at anytime anywhere in Australia. Fortunately for me I was in Tasmania and happened to be in the best place at the right time.

Written by Krystal Matthews – PDA SA Associate Director

Some women have a burning desire to have children. Other women decide not to have children. There is also a large group of women who never knew how much they wanted children until they discovered fertility issues.

I belong to a group not talked about in society often, if at all. I am a disabled women who grew up with a burning maternal instinct to be a mother. I am also a woman who is considered less capable of being a mother by society even before those 2 pink lines show up on a pregnancy test – simply because of my disability.

Most couples speak to their GP about starting a family. I knew this was a conversation best avoided for me; medical professionals have never filled me with optimism. My Child Studies teacher told me that she didn’t want me to participate in the assessment of having a computerised baby. According to her, it would be too difficult for me and she didn’t want me to drop and break this expensive baby doll. It was then, at 15 years old, that I was already classed as a ‘bad mother’ – before I was even given an opportunity to become one. It didn’t make sense to me. Was it because of my Cerebral Palsy? Or because of my physical limitations and wheelchair? Despite my lifelong dedication to fitting into this mainstream world, I was still being rejected by it and my one pivotal dream seemed like it was frowned upon by society.

This didn’t stop me from viewing myself as a mum in the future. It just made me understand that being a mum in a wheelchair would be harder; mostly because of how non-disabled people view disabled people and because I would need to convince the world that I could be a good mum whilst at the same time trying to convince myself.

I met my partner in 2012 and the paradigm shifted. He had a beautiful 4 year old daughter who taught me that children only want your love, attention and fun. None of these three needs were impacted by my wheelchair and, as I fell in love with my partner, my love for her blossomed equally. She didn’t see my disability like adults do and she adored that I liked to play like a child. So much of my childhood was consumed with physiotherapy activities disguised as play and this has made me actively seek out childlike fun as an adult. The step-parent role was my crash course into parenting and it filled me with confidence and a stronger desire to have my own child, alongside my step-daughter.

Pregnancy was my biggest mainstream role to date; I felt like a ‘real’ woman for the first time. I went to the hospital for mainstream appointments, and I could happily complain about all the mainstream side effects that pregnant women talk about such as nausea and tiredness. I’m not going to lie, being pregnant and in a wheelchair was rough to say the least. People thought I was in a wheelchair because I was pregnant, not a woman in a wheelchair who was pregnant. I was also asked a lot about how our baby was conceived, as if the idea of a woman with a disability having sex was considered outside the realm of possibility. I can’t imagine an able-bodied woman getting asked this question when she tells people she is pregnant.

I gave birth to my baby girl, Zara on the 14th of May 2019 by c-section. It was the first operation I had, and from it I received the most beautiful gift. Giving birth to child who is able-bodied was like giving birth to a child who has superpowers.

When Zara was 9 months old, she looked up at me with her arms open and her big blue eyes begging me to pick her up, which I couldn’t do standing up. Nothing prepared me for that moment. The guilt a mother can feel is astronomical, especially when your baby’s needs are your number one focus.

Every new mother has guilt and anxieties, and I worked through them like I did with every challenge in my life until then. Zara and I are the perfect partnership. She knows I need to sit down before I pick her up. She knows I need my wheelchair before we leave the house. She knows that she can put on her shoes faster than I can put on my shoes. Zara gets excited when she sees another person in a wheelchair as it assimilates her mainstream world. My 13-year-old bonus daughter sees the world a little differently now. I hope she sees the uniqueness in difference and that fitting in all the time is overrated.

My definition of being a good mum is not wrapped up in trying to fit into the mainstream world. Now, as an adult and a mother, I look back at myself as a child and I need to honour the little girl in the pink wheelchair; I kept moving, I kept trying and I didn’t listen to the adults who underestimated me. That little girl will teach my girls something special; that little girl made sure that the only person who was going to shape her world was me.

Tips for women with a physical disability thinking about having children.
• Listen to your own voice, consider what you need, what your individual situation is and seek out a medical team that is supportive.
• Focus on building up your strength and fitness to support your pregnancy
• Work with an Occupational Therapist and a Physio Therapist before, during and after pregnancy to support you.
• Be your own best friend. Shape your own world and know that you are made for your child and your child is made for you.
• Read other stories of disabled parents. We are out there. Read “We’ve Got This” by Eliza Hull.

Did you miss our recent fun and informative myth-busting “You CAN Ask That”?

Thankfully you can now take a look at it on our YouTube channel and hear the answers to those disability questions that you’d love to have answered – but maybe have been too uncomfortable to ask.

Hosted by talented MC Talia Spooner-Stewart, this event featured knowledgable panelists Dr Dinesh Palipana OAM, Krystal Matthews, Nick Schumi and Andrew Fairbairn. Answering the short and curly questions and sharing personal opinions and experiences around questions supplied by PDA Members, the general public and webinar attendees, this group keeps viewers entertained and eagerly waiting for the next question to be asked.

You can view it by going to:

https://youtu.be/ecnjDbjLDHQ

Whilst you’re there make sure that you subscribe to our YouTube channel.

We hope that you find this webinar informative and encourage you to fill in our short survey. It will only take you a few minutes and will greatly assist us to bring you more webinars in the future.

To access the survey, please go to:

https://www.surveymonkey.com/r/2JV7MFB

Tim Marks, PDA TAS Director, recently had his beach wheelchair delivered.

In this 2 part video on PDA’s YouTube channel, he shows just how easy it is to use, put together and dismantle.

          

          

Did you miss our recent webinar presented by the NDIS Quality and Safeguards Commission or do you just want to watch it again?

Well you’re in luck because it’s now available to view on the PDA YouTube channel.

Presented by Director of Engagement, Fran Vicary, this webinar talks about the role of the Commission, its mission to improve the quality and safety of NDIS supports and services and the rights of an NDIS participant. Thank you to Fran Vicary and the the NDIS Quality and Safeguards Commission for presenting this important and informative event.

Whether you’re currently accessing the NDIS, a service provider, working in the disability sector or just interested to learn about the Commission, this webinar will give you a comprehensive insight into the NDIS Quality and Safeguards Commission.

You can view it by going to:

https://youtu.be/G6dtgVFAclg

Whilst you’re there make sure that you subscribe to our YouTube channel.

We hope that you find this webinar informative and encourage you to fill in our short survey. It will only take you a few minutes and will greatly assist us to bring you more webinars in the future.

To access the survey, please go to:

https://www.surveymonkey.com/r/2JV7MFB

You are invited to PDA’s next informative webinar, “NDIS Quality & Safeguards Commission: what does it do for you?” on Wednesday March 23rd 2022:

6pm NSW/VIC/TAS/ACT
5:30pm SA
5pm QLD
4:30pm NT
3pm WA

Captioning and Auslan will be available for those who require it. Please email promotion@pda.org.au if you would like to access these services.

In her role as Director Engagement, Fran Vicary will talk about the role of the NDIS Quality and Safeguards Commission, its mission to improve the quality and safety of NDIS supports and services and your rights as an NDIS participant.

Whether you’re currently accessing the NDIS, a service provider, working in the disability sector or just interested in learning about the Commission, make sure that you join us for this very worthwhile webinar.

If you have a question that you’d like Fran to answer, please email promotion@pda.org.au or ask a question via the online chat during the webinar.

To register go to:

https://us02web.zoom.us/webinar/register/WN_ZFpu_SJLSrqFyHIu4Mfw7A

Please feel free to share this invitation with others in your network. You do not need to be a PDA Member to attend. However, if you’re interested in signing up for our FREE membership, you can join our community by going to:

www.pda.org.au/membership/

Thank you to Fran Vicary and the NDIS Quality and Safeguards Commission for presenting this important and informative event.

One of our past Associate Directors and current member, Kathryn Lyons, featured in an Our Logan article celebrating International Women’s Day earlier this week.

We are very proud of all that Kathryn has done and continues to do in her quest to improve accessibility and “change lives, to inspire, and encourage others to believe in themselves.”

💕

https://ourlogan.com.au/community/kathryns-mission-for-inclusivity/

LifeRAT (http://liferat.com.au) is a community group recently brought together to provide FREE Rapid Antigen Tests to Australia’s disabled community, and to overcome cost and supply issues and the difficulties and concerns experienced by PWD in trying to access RATs.

PDA’s Ambassador, Dinesh Palipana OAM, in conjunction with Scott, Tim and Tyler from Able Digital Wellness (http://abledigitalwellness.com.au) and Rob from Lovehoney (https://www.lovehoney.com.au), put together this project to ensure that people with disability are provided with free RAT testing so that they “can get back to living”.

Supported by partners that include Australia Post and Mainfreight, people with disability can register to take part in this incredible project by going to:

http://liferat.com.au

As part of his logistic involvement in the project, Lovehoney’s Rob is also interested in employing people with disability to be involved in the distribution of the RATs.

If you are a person with disability looking for employment and you’d like to be involved, please email Rob directly via rob.godwin@lovehoney.co.uk.

Rob has been doing a lot of work on inclusion with Lovehoney, including his involvement with ambassadors Dylan Alcott and Chantelle Otten Sex Therapist.

For more information go to:

www.abledgitalawareness.com.au/about-us/

Whether you’ve experienced issues voting remotely or in physically accessing polling stations (such as available disability parking, building access), availability of accessible polling booths for wheelchair users and those requiring other assistance (eg. Braille, Easy English, sensory requirements), PDA wants to hear from you.

With your help we hope to improve accessibility in Australian elections, so that people with disabilities are given the opportunity to participate in the same way as everyone else.

In a democratic society, voting is something that is generally taken for granted. However, for an increasing number of people with physical disabilities, local accessibility to vote is not guaranteed.

Following the announcement of an election, a list of polling places are made available by the Australian Electoral Commission (AEC). Within this list, each polling place is given a rating around accessibility to assist people with disabilities or mobility restrictions (i.e. wheelchair accessible, assisted wheelchair access, or not wheelchair accessible).

However, previously available statistics taken from this list showed that of the expected polling places outlined on the AEC website, as few as 3% of polling places will be fully accessible at the next Federal election.

These grossly inadequate numbers contravene the Commonwealth Electoral Act 1918 which states that electors are entitled to vote on election day at any polling place in their electorate.

So why should this inexcusably inadequate availability of accessible polling booths be tolerated?

Why should people with mobility disabilities be given no option but to travel (often long distances) outside of their local areas to vote or be compelled to vote outside polling stations or lodge their votes via post or telephone?

All Australians should be given the opportunity to engage in our democratic processes equally and with fair consideration.

We really want to hear about your personal experiences in voting at Australian elections (whether local, state or Federal) so that we can have a better understanding as to whether or not enough is being done to make our elections accessible.

We’ve put together a QUICK but IMPORTANT survey around this issue and encourage you all to participate, so that we can ensure that all members of the community have equal access to the political process.

Please go to the link below and take part in the survey BY 5PM AEDT MONDAY 14th MARCH 2022 and let’s make sure that everyone’s votes are counted at our upcoming elections.

https://www.surveymonkey.com/r/JVYDNNG

Today, on International Women’s Day, PDA’s SA Associate Director Krystal Matthews’ NDIS story has just been shared.

“There are a lot of different issues that affect women with disabilities and there are a lot of particular issues that affect parents who have disabilities.

It’s not easy, it’s not easy for anyone to be a mother, but the fact of me having a disability does not make me a bad mother.”

Check it out:

Today is International Women’s Day – a day for women (and men) worldwide to combine voices and share the message of equal rights for women.

Everyone has the right to be recognised equally without distinction or discrimination of any kind.

“Women’s rights are human rights!”

This very important day highlights the celebration of all women, in all their diversities – embracing all facets and intersections of faith, race, ethnicity, gender or sexual identity or disability.

Today is a celebration of all women who came before us, those with whom we now stand united and for those who will follow us.

Throughout history, women have come together to protest against the injustices they’ve faced, to support other women and to advocate for their rights and equality.

Since the establishment of International Women’s Day on the 8th March 1975, women have used this day of recognition to come together in solidarity to celebrate the achievements of women and to step on the discrimination, harassment and systemic barriers to equality and truly untethered success.

For more information head to:

www.iwda.org.au/take-action/international-womens-day/

International Women’s Day

International Women’s Day

PDA’s TAS Associate Director, Tammy Milne, has had another powerful piece published in the in the Tasmanian Times.

Well worth the read.

www.tasmaniantimes.com/2022/03/international-womens-day-for-a-woman-with-disability/

Written by and starring Melanie Hawkes (and her dog Upton)

Growing up with three younger brothers, my parents were busy all the time. I either had to learn to do things for myself, or wait a while for someone to help me – not ideal. With hands like mine, sometimes it was a challenge to find ways to do things, but it has made me more independent. There’s no better feeling than being able to achieve something previously thought impossible. 

I only have the ability to bend my little finger on each hand, but can grip things between some fingers as well. Tasks I can do include feed myself with ordinary cutlery, write, type, knit, cross-stitch and prune my bonsais with scissors. What I can’t do with one hand I can usually do with the other, and if not, I use my teeth. ** Disclaimer: don’t try this at home. I look after my teeth by flossing and brushing every day and regularly visiting my dentist. **

Here are some videos of me doing some everyday tasks. It might be slow and frustrating to watch, but I am proud that I can do these things when nobody is around to ask for help.

You can watch my videos below or by going to the PDA YouTube channel (https://www.youtube.com/channel/UCMyTzhTbs2oLH-WZR18zX2Q). Whilst you’re there please check out our other videos and subscribe.

I hope that you enjoy watching my videos.

With elections looming this year and with accessibility to vote further challenged by COVID-19, PDA is interested to hear about issues that you have personally faced in previous elections – whether at a polling station, early voting centre, via telephone, postal or AEC voting.

We encourage you all to participate in our short survey so that we can ensure that all members of the community have equal access to the political process.

https://www.surveymonkey.com/r/JVYDNNG

PDA’s TAS Associate Director Tammy Milne has written a piece for the ABC around her world that continues to shrink as a result of COVID.

It’s a great read.

“When the coronavirus pandemic hit Australian shores, Tammy Milne knew she would have to call time on her 33-year teaching career.

“I decided to retire, or resign,” she says. “It was basically because of the risk factors of COVID and just not feeling safe.”

…Unsure of where COVID may be circulating in the community, Tammy now limits her movements in order to protect herself.”

https://www.abc.net.au/news/2022-02-08/underlying-health-conditions-omicron-outbreak/100792142

We recently heard the story about an Australian man who found himself in a considerable financial predicament following the interstate purchase of a modified wheelchair vehicle.

It’s a sad story that we wanted to share with you to encourage you to do your research and take care when making a purchase.

Whilst this particular case is more a case of lack of due diligence, it highlights the importance of knowing all the facts before committing to buying something – particularly big ticket items.

John (name changed) was in need of a wheelchair accessible vehicle. Unable to find something suitable locally, he did what so many of us do and looked online. Using a reputable, popular and respectable online car sales website John found his perfect car – in his price range, with his needed modifications and with the added assurance of it having been owned by a state health department – albeit not in his state.

Happy with his decision, John bought the vehicle and arranged for it to be shipped through to him.

When it arrived John went to transfer the registration to his home state and to sort out his insurance – and this is where his nightmare began.

It is important to note that each state and territory in Australia has its own unique rules and regulations when it comes to registering a vehicle transferred from interstate.

It is also worth knowing that if you buy from a private seller, protections such as cooling-off periods and statutory warranties do not apply. With this being the case, it is crucial that you thoroughly research the car, have it inspected (whether by yourself, a trusted local contact or an independent inspector) and find out what rules/regulations/expectations/requirements apply to interstate vehicle registrations before you buy.

CarsGuide has a helpful article on purchasing a vehicle from another state (https://www.carsguide.com.au/car-advice/buying-a-car-interstate-how-to-purchase-a-vehicle-from-another-state-80480), HOWEVER, it is important that you are fully informed on your state’s rules PRIOR TO COMMITTING TO A PURCHASE. We encourage you to speak to the Department of Motor Vehicles in your state.

In John’s case, whilst the car was sold in good faith and as advertised by the seller, the associated paperwork relating to the modifications was incorrect. Recorded as a 7 seater, rather than the modified 4 seater, the vehicle could not be registered locally without accurate paperwork. In an added twist to the story, when chasing up this discrepancy with the interstate engineer who had approved the modifications, it was discovered that he’d passed away and so could not correct his paperwork.

To have the required inspections and anticipated corrective work done to meet his state’s vehicle standards and specifications, John was informed that associated costs would be considerable and outside of his financial capabilities. Selling locally in its existing state as a non-registrable vehicle would mean huge losses to John.

The Office of Fair Trading could not help as it was simply a case of buyer error.

So sadly John learnt the hard way that due diligence is essential.

Please ensure that you are fully informed and have done your research before you make a purchase – particularly those with a high dollar value.

Written by PDA President, Andrew Fairbairn.

In my last blog published in May 2021 (https://www.pda.org.au/2021/05/13/the-one-legged-sax-player-on-home-modifications-part-two/), I wrote of the process I had to go through to engage a Project Manager, Builder and OT. Well……I am so happy to write that as of today, the 29^thJanuary 2022:

THEY ARE NOW COMPLETE.

Let me take you back in time to the middle of 2021, and please forgive me with timeline, I am old, and I sometimes forget things.

By the end of May, all the reports were lodged with the NDIA by my OT and PM. I then had to wait while they were looked at, dissected, discussed, and according to the Delegate, LOST. You can imagine how that went down with me. I wasn’t impressed at all. My OT had to upload the Complex Home Modification Request (CHM) again, adding yet more wait time.

In the middle of October, yes, five months later, I received a phone call from yet another Delegate telling me that I needed to upload the OT CHM again, as they “couldn’t find it on the system” Well, you can imagine how that went down with me, so I insisted that the Delegate send me this request by email in accordance with my NDIS File stating that I only want contact by email. 

The email arrived, and I immediately replied to it, stating that I knew that the document was on the system, and I called the Delegate out. I also copied my reply to NDIA CEO Martin Hoffman, NDIA WA State Manager Ed Duncan and his Associate Manager Nathan Hills.

Now bear in mind, this has been ongoing now for 2.3 years. About 30 minutes later I received a phone call from Ed Duncan, wanting to know what was going on. I explained the situation to him, an lo and behold, 6 hours later a new plan dropped into my email, complete with all the funding required to complete the home modifications.

The build began in early November, with me and my wife moving into the backroom of our son’s house for the next 2.5 months.

I had to modify a few things with the design and placement of things as we went along, but overall, I now have a fully accessible house, complete with wide doorways throughout, ramps to the front and back doors, completely redesigned bathroom and laundry, new carport and a fully electric gate to access the back of the house.

As I close out this chapter, I implore you to keep on with gaining access to funding for home modifications. Stick to your plan, research, and know what you want, but mostly, don’t take no for an answer. YOU’VE GOT THIS.

BEFORE PHOTO

DURING PHOTOS

I will follow this up with a VLOG walk through to show the final product.

Stay tuned and stay safe.

So you’ve managed to get hold of rapid antigen test and you’ve tested positive for COVID.

So what do you do now?

• IMMEDIATELY ISOLATE.
• Call the National Coronavirus Helpline on 1800 020 080 for information about how to look after yourself when you are sick with COVID-19.
• DO NOT CALL 000 for an ambulance UNLESS YOU NEED EMERGENCY SERVICES. Resources are being unnecessarily stretched with a reported half of ambulance call-outs being made by COVID-19 patients not requiring emergency services.

Most people with COVID experience no symptoms (asymptomatic) or mild symptoms which can be managed with over-the-counter medication. Rest, drink lots of water and eat well.

However, please call 000 immediately if you develop severe symptoms such as:

• difficulty breathing
• oxygen levels less than 92% (when tested with a pulse oximeter)
• blue lips or face
• pain or pressure in the chest
• cold and clammy, or pale and mottled, skin
• fainting or collapsing
• being confused
• becoming difficult to wake up
• little or no urine output
• coughing up blood.

For help on a State/territory basis (including information, resources and links for more support for people with COVID-19, including when you can leave isolation), go to:

• ACT – https://www.covid19.act.gov.au/stay-safe-and-healthy/isolation-information-for-people-with-confirmed-covid-19
• NSW – https://www.health.nsw.gov.au/Infectious/factsheets/Pages/advice-for-confirmed.aspx
• NT – https://coronavirus.nt.gov.au/stay-safe/symptoms-testing#after
• QLD – https://www.qld.gov.au/health/conditions/health-alerts/coronavirus-covid-19/stay-informed/i-have-covid
• SA – https://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/conditions/infectious+diseases/covid-19/testing+and+tracing/information+about+a+positive+result+for+covid-19
• TAS – https://www.coronavirus.tas.gov.au/keeping-yourself-safe/information-for-positive-cases
• VIC – https://www.coronavirus.vic.gov.au/checklist-cases
• WA – https://www.healthywa.wa.gov.au/Articles/A_E/Coronavirus/COVID19-testing/After-your-COVID19-test

Information in Auslan around COVID-19 plans, managing symptoms, and getting medical help can be accessed at:

https://www.health.gov.au/resources/videos/top-3-covid-19-vaccine-questions-inclusions-in-a-covid-19-plan-managing-symptoms-and-getting-medical-help

You can also find translated information about testing positive for COVID-19 in over 60 languages by going to https://www.health.gov.au/resources/translated/coronavirus-covid-19-information-for-people-who-test-positive-for-covid-19-or-are-close-contacts-other-languages

If you think that you may have COVID symptoms or suspect that you may have been exposed to COVID, please do not enter pharmacies, supermarkets or other retail outlets.

Instead please go to a testing clinic or have a family member/friend get you a test and deliver it safely to you.

With rapid antigen tests stocks becoming more readily available at supermarkets and pharmacies in the coming days and weeks, access to home testing will improve.

In the meantime, take care and stay safe.

On International Day of People with Disability (December 3rd 2021) our incredible SA Associate Director was deservedly recognised.

Congratulations to Krystal and the other worthy Award winners.

Tammy had one of her articles published in the “Tasmanian Times” on International Day of People With Disability.

It’s an interesting read:

“I am disabled. I am on a fixed income. I am privileged and have a good and full life.

So when I wanted to attend a disability award dinner to support a friend who was nominated for an award I thought I would ask for support from the plethora of sponsors of the event as the tickets cost $140 each. I mean who is the dinner for?

And wouldn’t it look quite odd if people with disabilities couldn’t actually attend the dinner because of the cost? Or is this dinner like a lot of industry led initiatives where business pats it self on the back for providing paid services to people with disabilities and we paid for them and feel grateful they are having a dinner to celebrate but we aren’t included.

They actually make their money off the backs of the most vulnerable people in our community and yet set a new standard of Ableism when it comes to access for people with disabilities. We are simply shut out because of cost.

Now I’m not advocating for a ‘cancel culture’ mentality around this because it so cringe-worthy in its over thought and exclusion of people with disabilities but I am advocating for some provision to be made so that it is more accessible for people with disabilities to attend. I rang two of the sponsors and asked as I have been told there were some tickets available from sponsors, on both accounts I was fobbed off basically with, ‘no nothing for  you dear!’

My friend had her ticket paid for by her boss but her mother also paid for her own. So ticket pricing didn’t even take into consideration the cost to people who were nominated and the hardship this might thrust upon them and angst at having to weigh up attending and wearing the financial burden or not attending and thus making the whole event look like a farce.

Now lets get to the judging of the awards. It wasn’t until quite late into the organisation that a savvy person with disability asked the question, who is judging?

And yes they actually didn’t have anyone with a disability on the panel. In instances like this it is usual for the panel to be made up of a significant number of people with disability.

I mean you do want the awards to have credibility? Right?

My thinking around this is that those who organised the event have little understanding of inclusion or disability culture. In this case I am strongly advocating organisations to reach out to leaders in the disability community, ask questions, have us involved, become informed and educated.

We are very willing to contribute to anything that involves us to make it more inclusive  and accessible. The disability community embrace, the ethos of Nothing About Us Without Us as used in the seminal work of disability rights advocate James Charlton in the year 2000, about disability oppression and empowerment.

We want to be involved, we want to be invited to the table for discussion and listened too. I understand there is a great deal of learning around disability by the wider community and in the disability industry so just let us have a clear and free flowing dialogue about how we move forward from here.

3 December is the International Day of People with Disability.”

PDA recently held its AGM, with elections held for the Executive Board positions.

It is with great excitement that we introduce the new PDA Executive Team:

Andrew Fairbairn – President
Talia Spooner-Stewart – Vice President
Sharon Boyce – Vice President
Tim Harte – Treasurer

With such a strong leadership team at its helm, PDA’s future continues to shine bright as it continues to represent and support Australia’s physical disability community.

PDA would also like to thank, recognise and celebrate three incredible outgoing Board Members who have been instrumental in growing and moving forward our organisation:

Liz Reid has completed three successful terms as PDA President and now sits as NT Associate Director. She has played an outstanding role in growing PDA’s presence, recognition and reputation as an important, necessary and valued representative disability organisation on the Australian disability landscape.

Jonathan Shar who did an outstanding job as PDA Treasurer and NSW PDA Director.

Kathryn Lyons who has stepped down from her role as QLD Associate Director.

Both Kathryn and Jonathan have been instrumental as both founding and committee members in the establishment of PDA’s Youth Network and we are grateful that they will continue to be driving forces in its growth.

PDA has big plans moving forwards and looks forward to having its Board and Members play a role in its mission to enable every Australian living with a physical disability to realise their full potential.

Following elections at our recent AGM, we are proud to introduce PDA’s NSW Director Mark Pietsch.

Mark has a a long history of advocacy and lobbying, assisting and leading projects at a grass roots level through to intergovernmental relations.

As a person with a movement disorder, steps are not his friend. As a person who relies on a mix of assistive technology, he strongly pushes for greater consultation with people with physical disabilities in regards to the design of home and living supports funded through the NDIS.

He prides himself on listening, although he is not afraid to speak up for those who struggle to do so themselves.

Mark personally describes himself as “an absolute nerd when it comes to legislation and policy”. With experience in lobbying for change at a ministerial level, his success has been notable in relation to employment supports in the NDIS to assist participants in self-employment and the open market.

He also enjoys collaborating and sharing resources to address equity issues in society.

His personal and business mission is to highlight the abilities of all people and to actively work to reduce barriers faced by the disability community through education, support and connection to resources to assist bridging the equity gap faced by our community.

His values are reflected in the small organisation that he leads, which stands by the mantra and primary values of “integrity, creativity, diversity, community and commitment”.

We are excited to have Mark join the PDA Team and look forward to working with him to make a positive contribution to the Australian physical disability community.

Please join us in welcoming Mark.

Have you registered to join PDA’s AGM this Saturday via Zoom?

We’d love you to join us to hear what we’ve been up to, what our plans are moving forwards and just to be part of the conversation.

PDA Members are invited and encouraged to attend.

It’ll be held via Zoom so, no matter where you are, all you need is a phone or an internet connection and a mobile, laptop, tablet or computer.

3:00pm Sydney/Melbourne/Hobart/Canberra
2:30pm Adelaide
2:00pm Brisbane
1:30pm Darwin
12:00pm Perth

To register, please visit:

https://us02web.zoom.us/meeting/register/tZAufuygrzgrE9KCLt1C2Mg3H9RvgFCXVxvo

After registering, you will receive a confirmation email containing information about joining the meeting.

Meeting documents will be circulated ahead of the AGM.

We really look forward to you joining us and saying “hi”.

PDA’s Vice President, Talia Spooner-Stewart, is currently involved in Bravery Trust’s 100km challenge to raise funds and awareness for Australia’s veterans undergoing financial hardship.

To promote the event, Bravery Trust’s Media and Corporate Affairs Manager Jo Crawford-Wynd has written an article around Talia’s efforts and the story behind her decision to take part in this incredibly worthwhile challenge.

“Wheeling to inspirational half way milestone”

“Don’t judge me by my disability but give me an opportunity to show my ability. I hope I can communicate to people that anything is possible if you put your mind to it and are given an opportunity.”

That’s the message shared by Bravery Trek participant Talia Spooner-Stewart as she passes the halfway milestone of this year’s Bravery Trek.

Bravery Trek is a virtual challenge of 100km in 50 days. Talia is halfway to her goal having clocked up 55km as she enters the home stretch.

“I’ve been fortunate to have so much support from family, friends, my work colleagues, and my physio team along the way. Everyone has been incredibly generous and it’s given me extra motivation to be consistent– I’m just so grateful for everyone’s support. The support pushes me to keep going,” she said.

Talia was diagnosed with MS in 1998 and became wheelchair reliant five years ago. She says it was the opportunity to attend the Invictus Games in 2018 as a volunteer that inspired her to aim high and finds ways to continue sports and stay active.

“The Invictus Games changed everything. It was an eye-opener to what could be done. I had always thought “No, I can’t do that because I am in a wheelchair”– but the Invictus Games changed that, it changed my mindset to focus on what I can do instead,” she said.

Talia has been cycling and wheeling her way to 100km and she’s been able to add weekly swimming sessions to her tally. Although not a veteran herself, Talia works at Leidos Australia with veterans as colleagues and customers. Leidos is a Foundation Partner of Bravery Trek and values a culture to support those who have served our country.

“Leidos’ commitment to the veteran community, and a key value of inclusion, is why I went to the Invictus Games in the first place – they were able to offer me that opportunity. Leidos is why I’m participating in Bravery Trek … I’ve had a few really big donations and it has surprised me. I really do appreciate everyone’s support,” Talia said.

“I don’t ask others for help very often but this event is so important and the messaging to support veterans is so important.

“As a community we are generous, and people support lots of charities, but the messaging about veterans can get lost in that. They have made the bravest sacrifice to support our freedom and we can all do more to support veterans when they need some assistance.”

A quick check of Talia’s socials shows that she’s been bombarded with messages of support, and there’s repeated use of the word “inspirational” by her supporters – it’s something she accepts with humility.

“If my actions can inspire others I’ll embrace it – and knowing the impact that the Invictus Games had on me, if my efforts can help change people’s mindsets and empower them to live a better life – I’m fine with whatever words they call me – as long as it helps others!”

To donate or send a message of support to Talia please visit: www.braverytrek.com.au/talia-spooner-stewart.

Funds raised support the work of national military charity Bravery Trust to provide financial aid and financial counselling to veterans who been injured during service and face hardship. Learn more at www.braverytrust.org.au.

Elle Steele is a PDA Member and former PDA Board Member.

She is also an incredible woman with many more strings to her bow. As a Paralympian, successful businesswoman, motivational speaker, disability advocate and a supportive, beautiful soul, she has much knowledge, insight and advice to share. Well worth a listen.

She has very kindly allowed us to share a video that she was involved with on the PDA YouTube channel.

Check it out by clicking below or by going to: https://www.youtube.com/watch?v=k8H5uwzUY4k

Don’t forget to subscribe to the PDA YouTube channel whilst you’re there.

Earlier this week, PDA TAS Associate Director Tammy Milne, spoke at the TasCOSS (Tasmanian Council of Social Services) Conference. Her talk was around the theme “Adapt – Refect – Thrive”, where she shared her own experiences in accessing the COVID-19 vaccination as a person with disability and just where the system fell flat.

REFLECT

Covid 19 has absolutely shattered our world reality. None of us were prepared for the virus that not only took lives, (currently around 4 and a half million worldwide) but stole our lifestyles and forced us to lockdown, to vaccinate and to learn new skills like social distancing, hand sanitising and checking in to just about everywhere we go to protect the ones we love.

Australia thus far has done exceptionally in adapting to this new lifestyle and containing this virus. Very few of us in Tasmania have been personally effected by death from this insidious disease but we have been affected by systems and procedures that lack access to a cohort of our society.

That cohort is People with Disabilities.

Most of us here today know the marginalisation of people with disabilities in our society. Most of us here deal on a day to day basis in our organisations with people with disabilities. Yet, when COVID hit us in March 2020, No one in government was prepared with real understanding of the intricacies of the life of PWD and how covid would impact our lives and how we could be left behind, with no real planning for us leaving us precariously vulnerable.

In March 2020 I gave evidence at the Royal Commission into abuse and neglect of people with disabilities. My evidence was specific to how, as a person with a disability I was left vulnerable – as were many others who require the assistance of support workers to come into our homes on a daily  basis to care for our basic needs. I gave evidence that I felt like my house was a potential COVID hotspot as my support workers and my husband’s aged care support came in and out of our home daily.  We could only trust that they were doing the right thing to protect their vulnerable clients.

Reflect on how you would feel if this was you?

Fast forward to the vaccine roll out which started in Tasmania in early March. 

The booking system.

How do you think the online booking system has played out for People with disabilities and the wider Tasmanian community with functional literacy rates of 49%? That’s 49% of people who function in the world of reading and writing well enough to navigate our systems. This excludes peoples who are computer literate which is a whole other ball game as we know.

• People with disabilities cannot access vaccines because they cannot use the booking system.

• People who cannot read and write cannot access the vaccines because they cannot access the booking system.

• People without a computer and who are not technologically literate cannot access the booking system.

• People without a phone cannot access the booking system. 

Go to your GP you say? Well not all towns and rural regional areas had a roll out of GP’s who were willing to vaccinate their patients.

Can you see the gaps here? Can you see a pattern?

Bureaucracy has a real disconnect it seems with the implementation of systems and the people that use them. The most vulnerable don’t seem to be at the forefront of the thought process in this process.

Speaking from personal experience, I rang the booking line and took the next available appointment for a vaccine which was 100km from my home, a trip I took for both jabs. My daughter had to drive from Hobart to Launceston to get her first jab. We have mobility, we have cars, we have cash for petrol and we can navigate the system – but still it was arduous for us.

Reflect on this and how your clients may be impacted with the same story?

Now I’m no wilting flower when it comes to asking questions and finding out information. Back in March I rang the health department to see when PWD were scheduled to get a vaccine. How would ‘they’, those shadowy bureaucrats that are closeted in offices in tall buildings tasked with serving and protecting, how would ‘they’ know that I belonged to 1B? They didn’t know and I was fobbed off by someone who said the NDIS would be letting me know. So I rang the NDIS of course and was told by the NDIS that they had no jurisdiction in this matter and it was up to the state health department to implement procedures and the circle of buck passing went on and on.

It was only in late-June-early-July that dedicated Disability vaccine clinics were opened in Hobart and Launceston – but not in regional or rural Tasmania.

The messaging to the vulnerable, the real people of Tasmania, the elderly, the disabled has been very sparse, in some cases it’s like we have been totally overlooked in planning for the vaccine rollout – just as we were at beginning off the outbreak with support workers, PPE and isolation and protection.

ADAPT

It is said that, people with disabilities are often good problem solvers, thinking outside the box and creating solutions to problems that may not be apparent to others.

We know our own situations, we know our risks, we know our capacities and we are the best experts on our situations. We need to always be at the forefront of managements and bureaucracy when policy and systems are rolled out! 4.4 million people live with disability in Australia today. That’s a huge amount of adaptability. That’s a huge cohort of our Australian population. We need to be having our voices in the places where policy and systems are rolled out. 

THRIVE

PWD are not here to blame and shame government and agencies for things that are not right, we are here to team with and be advisors with government and agencies. We are large stakeholders in our community and our own lives and we need to be listened to and be heard. We are going to have to live with Covid for a long time to come and to thrive we are going to have to work together. So my treaty here is for those at the top, in those shadowy offices, in tall buildings, to talk to, listen and hear PWD.

To adapt and thrive we need to be valued as experts in our own field which is disability and be heard, our lives depend on it!

PDA’s Annual General Meeting will be held on Saturday 27th November 2021 via Zoom Videoconference.

PDA Members are invited and encouraged to attend.

3:00pm Sydney/Melbourne/Hobart/Canberra
2:30pm Adelaide
2:00pm Brisbane
1:30pm Darwin
12:00pm Perth

To register, please visit:

https://us02web.zoom.us/meeting/register/tZAufuygrzgrE9KCLt1C2Mg3H9RvgFCXVxvo

After registering, you will receive a confirmation email containing information about joining the meeting.

Meeting documents will be circulated ahead of the AGM.

We hope you are able to attend.

Written by Melanie Hawkes (PDA WA Associate Director)

Melanie was commissioned to write an article for “Housing Choices Australia” Annual Report. They are happy for it to be shared on our website.

As a person with a disability, I create a fair bit of rubbish. Items such as gloves and incontinence products cannot be helped, and I am not going to start limiting the use of those. I like to focus on what I can control and reduce that as much as possible. Waste is a huge issue that you can no longer ignore, leave for someone else to deal with or put in the too-hard basket. I like to think that my actions can inspire others, that their actions will inspire others and, before you know it, thousands of people are doing it and it is having a positive impact on the environment. 

I started paying attention to my waste when I moved into a brand new home in 2015. I needed some art to cover the boring green fences that three of my windows face. Buying brand new, weather-resistant art was not appealing due to the cost. I thought about doing mosaics, but didn’t want to break any plates or buy special tools or materials. So I started collecting bottle tops. Family and friends also gave me theirs and I was able to use ones of all shapes, sizes, colours and materials from milk, juice, beer, wine, soft drink and even lids off beauty products. I now collect anything useful, like can ring-pulls, plastic straws, corks and the small coloured silicone things you find in bottles of tablets to prevent moisture. They do rust and fade in the weather, but I like the effect it has. And I can easily and cheaply replace them if I wanted.

Not long after I started my recycled art, I read about Plastic Free July. It challenged me to pick one plastic item to reduce for the month. I picked plastic bin liners for my kitchen bin and replaced it with newspaper! It forced me to focus on what I was putting in my bin. With newspaper as a bin liner, I couldn’t put wet, gross stuff in it or I’d be washing the bin every week. Who wants to do that? So I started keeping a container for scraps in the fridge. I was giving these scraps to friends with worm farms, compost or bokashi bins (or the odd stranger from the Share Waste site!), but lately I’ve been taking it to a local community garden or burying it in my back yard for the earthworms to take care of. Eggshells and tea leaves are great for the garden, so I always keep them in a separate container on my bench for my plants. I wish I lived in an area that has a FOGO (or three bin system) bin collection. It would be more convenient, but you cannot always trust that council will do the right thing with it. 

I have since done courses on living smart and reducing waste. That one act of lining my kitchen bin with newspaper has led to many other changes at home. I now: 

• * Make my own toothpaste and apple cider vinegar and cleaning products 
• * Use solid shampoo bars and bars of soap instead of liquid in the shower
• * Have a dog pooh worm farm
• * Take my reusable shopping bags (and have some on the back of my chair for when I forget)
• * Use reusable straws at home and in my water bottles (got my dad to cut them to size)
• * Take my own containers and buy in bulk where possible 
• * Sort my rubbish and return recyclable items to specialist places (e.g. light globes and ink cartridges go to my local library)  
• * Return my soft plastic to the supermarket for recycling
• * Use rechargeable batteries 
• * Refuse single-use plastic bags when buying fruit and vegetables 
• * Use soap nuts instead of washing powder in my washing machine 
• * Use metal pegs instead of plastic ones on my washing line 
• * Buy tissues and toilet paper made from recycled paper or bamboo and not ones wrapped in plastic 
• * Use reusable paper towels (and wash them when dirty) in my kitchen and bathroom 
• * Take my lunch to work to avoid buying takeaway 
• * Have a water filter at home and refill my water bottles so I don’t have to buy bottled water
• * Make my own dog treats and dried fruit in my dehydrator
• * Return eligible containers for 10c refund 
• * Collect the cold water when waiting for the tap water to warm up 
• * Get my dog to pick up rubbish while out walking.

There are probably many more things that I could be doing, and I plan to add to this list as often as possible. But it is what I can comfortably manage for now. If you would like to start, or do more, consider these points:

• * Start small. Don’t go out and try to do everything at once.
• * New habits take time, and you do not want to be disheartened along the way if you encounter setbacks. Build on each small success.
• * Make it easy and convenient to succeed. I have a normal bin, a recycle bin and a bag for soft plastics in the kitchen(so it’s easy to sort the rubbish where it’s created). When the bag is full, I put it at my front door so I remember to take it back to the shops next time I go. 
• * Be a conscientious shopper. Question every purchase you make. For example: do you really need it? Is there a more sustainable alternative (e.g. wet wipes vs cloth wipes that can be washed)? Can you easily make it yourself? Can you reuse the packaging (e.g. beetroot in a glass jar could be better than a tin)? Where can I buy it locally (e.g. a local farmers market vs a big chain supermarket)? Can I return the packaging and refill it? Can I make do with something else I have at home (e.g. you can make your own spray and wipe mix, and use it for everything in the kitchen, bathroom and even the toilet, instead of buying three different bottles)? Do I need it brand new or would second hand do?
• * Decide on a reason for doing this. Don’t do it just because someone told you to. Make it a passion. Know that you are helping the environment. It will probably save you money too! 
• * Educate yourself. Your local council can tell you how to sort your rubbish correctly, and there are many online resources. Ask plenty of questions until you are satisfied with the answer. There are no dumb questions, ever! 
• * Join your local community garden and Buy Nothing Project group to find like-minded people who can support you in this journey. You can share your experience with others and learn so much. 

Looking after the environment is a shared responsibility. If we all do as much as we can, it will go a long way to ensuring a brighter future for everyone.

Good luck! 

⚠️ TRIGGER WARNING. This article discusses suicidal feelings.

This week, as part of Mental Health Week, PDA’s TAS Associate Director Tammy Milne, was a speaker at the North West Film Society.

Her honest, heartfelt, poignant and incredibly brave speech took the audience on an emotional journey that shows that no one is vaccinated against the black dog of depression.

Tammy has very kindly allowed us to publish her words and her story and we are extremely grateful to this wonderful, kind and courageous woman for normalising depression and giving a voice and hope to others who may have similar journeys.

“I would like to acknowledge the country in which we are all meeting tonight.

This is Palawa country in lutruwita on the land of the punnalir.planner people.  I acknowledge and pay respect to Aboriginal people as the traditional and original owners, and continuing custodians of the lands on which we all gather today and acknowledge Elders – past and present and emerging. 

Thank you everyone who has come along tonight to hear this very poignant discussion for mental health week and thank you for the opportunity to share my story and the story of 1000s of other people with disabilities all over. 

As you are well aware I’m a person living with disability. I want to talk this evening about intersectionality. How disability and other conditions are not mutually exclusive. How we don’t often think of people with disability and Breast cancer, or people with disabilities and cardiovascular disease or people with disabilities and mental health. Why is that? Because PWD seem to take up space  in our minds,  as a particular group that’s in our minds don’t move outside that sphere or silo. 

We compartmentalised disabilities and PWD as one diagnosis  and don’t think more broadly of other issues, like mental health that can accompany person with disability on their life journey. 

But statistics inform us that 32% of people living with disability experience high or very high psychological distress compared to 8% with out disability. Another study found that 43% sufferer psychological distress in conjunction with their disability. So if you look at the way society treats people with disability, our society, here in Australia you will be able to understand why PWD have high rates of depression compared with the wider community. We are often treated with fear, people don’t know what to expect with interacting with us , we are ignored, we are pityed , feel shame and are most often treated as less then the rest of the community. 

A really great show to watch on telly   and  is on SBS. Its  called Australia what does Australia really think of disability with Kurt Fearnely . Its an eye opener. From the show a survey was collected and 

72% of respondents without disabilities said they felt sorry for people with a disability.

72% agreed that people sometimes make fun of people with disability.

So what Im saying here and what the statistics confirm  is there is no wonder PWD suffer from depression! 

My own story is a winding journey and the cumulative effects of all the things already spoken about. 

I was a fire Cracker  ready to go off. I had internalised all the trauma of disability and the discrimination, the personal attacks, the pain that I had suffered all my life  and in 2018 i exploded.

In a quiet,  under the radar sort of way, that involved pills and a good long lay down that I hoped I would never  wake from. I had had enough!  The two years prior to this were tumultuous! I suffered a back injury at work and fractured three vertebrae in a fall. 

The two year prior to my attempted long sleep looked like this! A catalyst of events that fused together in a nightmare scenario that I couldn’t dig my way out of. I hurt my back, went through the workers comp. trauma. I mean I wasn’t taken seriously because of my disability it took 6 weeks from the injury till I got an MRI that actually found the fractures, 

And then I started a new job with a principal who wasn’t too keen on having a person with a disability thrust upon them by the department. I spiralled down down down into self doubt, every time I received any form of set back,   Or criticism;  constructive or not it felt like a body blow  I felt worthless.

I went  to a very nice doctor in Launceston and told him my story and he said quite frankly you have PTSD. What you have experienced, you have PTSD. 

I still am hyper vigilant  in my surrounding always looking for an exit if I need it. I have a very strong fight or flight response.  Which looks like I get pissed  off and leave but in reality it’s my coping mechanism to escape any further trauma by just leaving. I startle  easily, I jump easily  at any loud noise  or sound

How did i start getting through it. Well I recognised that its me and it not me! Its not my fault that  society see people with disabilities as unreliable witnesses to their own health needs. Its not my fault that people see people  with disabilities as inferior. Its not my fault that the principal couldn’t see my value. Its not my fault that all people with disabilities are not valued. I am me and I embraced that. I embraced my disabilities. I still get discriminated against. Especially outside my home city and even in my city but I know its not my fault. It their problem!

But i can do something about it. I quit my job with the department of education last year after 33 years. I embraced disability. I’m now the Tasmanian associate director of physical disabilities Australia. I strive to make our city our Tasmania and more inclusive and equitable place for all. My work as I see it now is to make life better from now on for all people. That’s why I put my hand up to speak at events like this. 

My take home message is that mental health should be treated like any other health condition, we get mammograms, paps smears, colonoscopy, prostrate checks, cardio vascular checks and mental health checks should be though of and treated no differently. Go to a councillor, seek out a psychologist.

Health is holistic;  it’s mind and body.

Thank you again for allowing me to share.”

References:

https://journals.lww.com/psychosomaticmedicine/Abstract/2007/05000/Joint_Effect_of_Depression_and_Chronic_Conditions.7.aspx

https://www.sbs.com.au/guide/article/2021/07/20/sbs-asks-what-does-australia-really-think-about-disability-old-people-obesity

https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/people-with-disability/prevalence-of-disability

📷 thanks to Vicki Carman-Brown

Next Thursday Physical Disability Australia (PDA) and its Ambassador, Dr Dinesh Palipana OAM, will be hosting a free Zoom webinar around the importance of vaccination – particularly in light of looming plans to lift lockdowns.

With vaccination numbers amongst Australia’s disability community grossly inadequate, next month’s anticipated reopening will put our most vulnerable at risk and it’s important that this is addressed before it’s too late.

In this webinar Dr Dinesh will debunk the myths surrounding the COVID-19 vaccine, answering questions and urging the medically able unvaccinated to get the jab.

If you have vaccination concerns, are waiting to receive your first or second jabs or simply want to hear the facts from a medical expert from the disability community…this webinar is for you.

6:30pm NSW/VIC/ACT/TAS

6pm SA

5:30pm QLD

5pm NT

3:30pm WA

PDA Members and the wider community are encouraged to attend.

Dr Dinesh is happy to answer your questions and asks that you send them to promotion@pda.org.au once you have registered.

To sign up for the webinar please go to:

https://us02web.zoom.us/webinar/register/WN_LDgl8wZmT5u8GB3vmQz8Pg

Join Dr Dinesh. 

Hear the facts. 

Make an informed vaccination decision.

Be safe.

Written by Paul Williamson – PDA ACT Associate Director

Why you should be a member of PDA

Physical Disability Australia (PDA) is the national peak body representing people living with physical disabilities, their families and their allies in Australia. It has members in all states and territories.

What do we do?

PDA undertakes a range of important work, including:

• Identifying the needs of people living with physical disabilities and communicating these needs to government.

• Providing a strong voice for people with physical disabilities to express their views and priorities.

• Evaluating programs and services supporting people with a physical disability.

• Undertaking advocacy and raising public awareness of issues facing people living with a physical disability, and

• Providing support for people with physical disabilities to develop agency and exercise their rights.

Fundamentally, the overarching focus of PDA is on promoting rights and improving the lives of people with physical disabilities and their families.

Why do we do it?

While many of us face hardships at one point in our lives, for people with a disability these barriers can be more frequent and have a more significant impact. Barriers include a physical environment that is not accessible, lack of access to appropriate transportation, lack of assistive technology and the prevalence of negative attitudes towards disability and services, systems and policies that are either non-existent or hinder the involvement of people with disabilities in daily life.

The disability community has been fighting for decades to reduce the impact of these barriers. While as individuals, we are limited in the impact that we can have – as a collective, the disability community can have a powerful voice. If harnessed,people with disabilities can use this voice to influence policy and practice to benefit all people living with a disability.

Who do we represent?

PDA represents people with a wide range of different disability types.

Data from the Australian Bureau of Statistics show that approximately 1 in 6 (18%) people in Australia -or about 4.4 million people – live with a disability. For over three-quarters (77%) of these people, their primary form of disability  (i.e. the condition causing the most problems) is physical. This includes diseases of the:

• musculoskeletal system and connective tissue (30%), such as back problems and arthritis

• ear and mastoid processes (8.4%), such as hearing loss and tinnitus

• circulatory system (6.3%), such as heart disease and stroke

• nervous system (6.7%), such as cerebral palsy and multiple sclerosis.

Together, this represents a significant interest group. By coming together and organising, people living with physical disabilities have the power to ensure their concerns are listened to and taken seriously by all levels of government.

Join us today!

If you live with a physical disability, are a family member or even an ally – you can help support the work of PDA and improve the lives of people living with a physical disability by becoming a member. Membership is free and signing up is as easy as providing some basic information online at https://www.pda.org.au/membership/.

If you are already a member, consider encouraging your friends and family members to join PDA to help support our work to ensuring a fairer and more equitable society for people living with a physical disability.

You will become part of a comprehensive and diverse community of Australians living with physical disabilities and help ensure that PDA can speak authoritatively on behalf of a broad range of lived experience. Becoming a PDA member also allows you to input into our activities and contribute to our work.

For more information, please do not hesitate to call PDA on 1800 732 674 or email us at manager@pda.org.au. If you live in the ACT, I’d love to hear from you – feel free to give me a call on 0402 974 010.

Written my Robert Wise

I came across Physical Disability Australia while searching the web for activities and groups for people with a physical disability. During my search the PDA website was one of the options that came up. As I was reading the information on the PDA website, I noticed they were holding Social Hours once a fortnight using online video chat software known as Zoom and I decided the join the organisation and join these Social Hours.

PDA hold 2 social hours which includes a youth chat for under 30s and the general one. These social hours are open to all members of PDA. I decided to join the general chat. Pre-registration is required for the online chats. I took the plunge and signed up for my first social hour in June 2020. On joining my first one I felt rather nervous, but I was welcomed by the other regulars on the chat including Jonathon, Andrew, Liz and Natasha to name a few. Many topics are discussed including what we do, how we cope with life and to share some of our stories – both funny and not so funny.

The social hours helped me overcome some barriers during the 2020 COVID lockdown as I was stuck at home. All my regular activities had been cancelled including my Tenpin Bowling and the Men’s Shed. I live alone and, apart from one or two visits a week by support workers and therapists, my disability life can get extremely hard and lonely. Even though we have not met yet, I feel I have made some new friends through the PDA social hours. I counted down days every fortnight to join the next one. 

I would like to invite all members of PDA to give it try. You may meet some old friends and make some new ones.

PDA Social hours are held on the first Monday every month at 7pm AEST.

For more information check out PDA’s Facebook page or email promotion@pda.org.au.

To register for a Social Hour go to:

https://us02web.zoom.us/meeting/register/tZYqc–qqjkjG903J2KoieI9ASVSig7b4mxr

Hope to see you at a Social Hour soon.

Krystal is a wearer of many hats and her ability shines through; but none are more important to her than setting a strong example for her family and advocating for others who are margalised and largely underestimated by mainstream society.

The 36 year old has worked for South Australia’s peak government social housing provider for over 10 years. This firmly places her in a position to help support people experiencing complex issues. In addition, she has developed programs to support and make service improvement to large-scale psychosocial community issues such as homelessness and Family and Domestic Violence.

Krystal was born with Cerebral Palsy and is a wheelchair user.  Overcoming challenges and preconceived notations of what she was considered (by society) to be capable of, drove her determination to be respected for what she can do, rather than what people think she can’t, or shouldn’t do.  

Krystal has 2 beautiful daughters, teaching people about equality, inclusion, and the beauty of diversity in society was intensified with motherhood. She is currently raising an energetic 2 year old toddler whilst in a wheelchair, which she reports as being both challenging and magical. Krystal enjoys spending time with family and friends, drinking a glass of wine and is a 90’s music tragic. 

Krystal is determined to ensure the lived experience of people with a disability shapes the way services are created and delivered in the future. She is also passionate about education awareness and safeguarding the rights of people with a disability in future policy development and negotiations. Krystal wants all people with a disability to feel safe, confident and capable of achieving their goals. Krystal hopes that her professional experience in advocacy and development, combined with her lived experience and determination to make a difference, will help further positive changes for people living with disability. 

Please join us in welcoming Krystal to PDA’s team.

Written by Tim Harte – PDA’s VIC Director

For people with disabilities, reasonable adjustments are a common challenge to negotiate.  Reasonable adjustments can include modifications to the environment or conditions of any area of public life, such as work, study, or provision of a service (e.g., a local library), that allow people with disabilities to work safely and productively or to access that service. In an educational setting, reasonable adjustments can include extra time for assessment tasks, assistance in hands-on learning to complete physical aspects of learning tasks (e.g., shifting a microscope into position on a desk), or the provision of learning materials in an alternative format, such as large size font or other formats. 

During my time undertaking undergraduate study, I have found there is a lack of knowledge and understanding of reasonable adjustments by staff of tertiary education institutions and the Australian population. I have observed that physical reasonable adjustments are understood better, perhaps because the adjustment is more observably connected with the physical requirement e.g. if a physics assessment task requires a student to jump up and down with an accelerometer, the average person assumes and accepts that a student in a wheelchair will require an altered assessment task. From experience, reasonable adjustments required for non-physical disabilities or physical disabilities that are less well-known, obvious and observable, such as those occurring from complex medical conditions, are understood and accepted to a lesser extent, sometimes to the point of academic staff viewing the reasonable adjustments as an unfair advantage.

After conversing with fellow students and academic staff about the reasoning behind my own reasonable adjustments,there has remained a lack of understanding for the rationale of non-access related reasonable adjustments, such as extra time for assessment tasks. Extra time for assessment tasks can be seen as an access related reasonable adjustment e.g., a student cannot write as fast due to a disability so extra time is allotted to assessments, but the average student often runs out of time in assessment tasks, hence could claim they should have more time too. Fundamentally, I think it is the implementation of reasonable adjustments for equitable outcomes that are least understood and part of this is due to the lack of understanding of ‘equity’. 

Equality means people have equal rights and equal access to certain social goods and social services; equity, on the other hand, acknowledges that society is not a level playing field and each person is in, or born into, different circumstances,hence specific, advantageous resources/opportunities need to be allocated appropriately to attain equitable outcomes. The broader Australian populace needs to understand that, due to both disabling aspects of our physical environment (social model of disability) and unchangeable impacts our impairments have on our lives (radical model of disability),people with disabilities experience inequity every day of their lives. The average Australian does not realise that ‘a fair go’ is denied to people with disabilities. 

Education, via personal story telling, breaks down perceptions of difference and highlights similarities and shared experiences, thereby humanising people with disabilities in the eyes of non-disabled people. This facilitates understanding and empathy of the daily plight of people with disabilities – assisting the non-disabled population to ‘walk in our shoes’ and comprehend the lives and experiences of people with disabilities, as well as the requirement for reasonable adjustments to achieve some level of equity.  

Written by Christine Kerr – “Platform Stories” Editor

Have you heard about the fabulous online magazine Platform Stories?

The site is dedicated to empowering women with disabilities from around the world through authentic, positive and inspiring content that is frank and without sugar coating.

Through its stories, Christine Kerr as Editor explores “the trials and tribulations, love and laughter, travel and adventure, challenges and changes… all from our own unique perspectives.”

A wonderful article on PDA’s WA Associate Director, Melanie Hawkes has just been published and it’s well worth a read.

https://platformstories.com.au/2021/07/on-the-platform-with-melanie-hawkes/

Written by ABC’s Nick McAllister

Here’s a great ABC article about PDA’s Vice-President, Andrew Fairbairn.

https://www.abc.net.au/news/2021-06-13/acquiring-a-physical-disability-later-in-life/100171668?fbclid=IwAR35bGy9J79ql2P8o48jixge33serhfdbtjKzSRMIigrnuaMy_Nwn9WYqx4

Yesterday Dr Norman Swan (Producer and presenter of the Health Report) reported on new evidence from the UK about the most common symptoms of COVID-19. Don’t assume that just because you’re vaccinated, you won’t have any COVID symptoms if you come in contact with the virus. You may still be infectious and capable of spreading the germ.

Depending on your vaccination status, there are different symptoms that present.

Some could easily be mistaken for a common cold, so please don’t dismiss these as being nothing to worry about – particularly with so much of Australia currently affected by COVID outbreaks.

The 4 MOST COMMON PRESENTING SYMPTOMS for each of the groups are:

* Fully vaccinated: headache, runny nose, sneezing, sore throat;

* Partly vaccinated (one dose): headache, runny nose, sneezing, persistent cough; and

* Unvaccinated: headache, sore throat, runny nose, fever.

Some people might register all the symptoms, however many will only get one – most typically a headache.

Dr Swan’s take-home message is: “If you have any one of these symptoms, even in the slightest way, you’ve got to get tested.”

https://www.abc.net.au/radio/programs/coronacast/how-did-it-all-go-so-bad-so-quickly/13421314?utm_content=INTRO&list_name=23CA1130-277A-4852-82D9-20D1BB5DD3DE&promote_channel=edmail&utm_campaign=coronavirus-report-smh&utm_medium=email&utm_source=newsletter&utm_term=2021-06-28&mbnr=MjI5NDQ4ODY&instance=2021-06-28-20-22-AEST&jobid=29315997&fbclid=IwAR3hMSW73nSiv4SRujDYtgOZqmqBhO8OrxdUQKFMIC76ahhj73hXUpSgoO0

As Australia moves to greater restrictions in our battle with COVID, it is important that we are aware of how this is affecting our local areas and the role we must play in keeping ourselves and others safe.

With health authorities concerned about the spread of the highly infectious Delta variant, please keep on top of updates in your state/territory:

NSW – https://www.health.nsw.gov.au/Infectious/covid-19/Pages/latest-updates.aspx

VIC – https://www.dhhs.vic.gov.au/media-hub-coronavirus-disease-covid-19

SA – https://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/conditions/infectious+diseases/covid-19/about+covid-19/latest+updates/latest+updates+on+covid-19

TAS – https://coronavirus.tas.gov.au

WA – https://ww2.health.wa.gov.au/News

ACT – https://www.covid19.act.gov.au/updates

QLD – https://www.qld.gov.au/health/conditions/health-alerts/coronavirus-covid-19/current-status/urgent-covid-19-update

NT – https://coronavirus.nt.gov.au

Please follow advice from your local authority.

We’re all in this together.

Stay safe everyone.

Written by Sharon Boyce

My ongoing health journey and understanding disability and health is especially important in these covid times. Accessing the equipment necessary for diagnosis and treatment is essential and when you can not get onto the CAT Scan bed this is a major problem. We have to make it work. We have to ensure equipment is accessible and suits everybody. We also need to be educated about how we can adapt situations and support people with high level complex physical disability.

I thought I might share with you some of the snapshots and issues that arose and had to be explored over the past two years of my life and health journey. I also thought I could look at some of the specific problems that arose and some interesting solutions that I found existed. 

I should let you know that I am now back at home and easing back into work after spending many months in and out of hospital with septic shock of my kidney again. At the start of the crisis I thought I was going so well avoiding having to go to doctors and mostly self quarantining – until I was rushed to hospital in Toowoomba and experienced the Covid-19 environment first hand and from a disability perspective! The many Zoom and team sessions came together to help me in surviving many weeks in hospital, along with my family and carers helping in every area and watching everything that was done. 

There were some interesting discussions and outcomes that followed, with some massive gaps in disability care, attitude and understanding being raised. The doctors were good and some of the nurses tried very hard to understand disability, but even they really were learning as we went along. There needs to be so much more education available to those in the medical sector around all areas of disability and life issues such as the need for space, Disability-considered equipment, attitudes and perception. There seemed to exist a very real lack of consideration and workability of hospital layout in terms of illness, physical disability. There was no room for my equipment and equipment (such as hoists, slings and a shower chair) that made my life work were just seen as inconveniences and something that took up valuable space. 

Assumptions were made about my ability to make choices, despite my cognitive abilities and very complex disability needs requiring a lot of flexibility. My family and carers were sometimes asked inappropriate questions about my choices and why I needed certain equipment or certain medications. I was highly allergic to one such medicine and it was only because of a carer and my own surveillance of the process that it was stopped immediately and no major issues resulted. There was no knowledge about using equipment or even accessing CAT scans or X-Ray equipment that worked around my needs or condition. Even medical choices I made were questioned because attitudes of some staff were condescending and misinformed about physical disability. There also seemed to be an attitude amongst staff that because I was so close to death, they should just make every decision and I should not question it or how they did it. This did not work because they did not understand disability, instead simply making assumptions and conclusions around their limited understanding. As a result there were times that my care and recovery were placed in jeopardy. Issues of medication and very limited time frames for actual survival also compounded the situation. 

Once I began to improve I tried to engage staff and educate them around hoisting, stomas, showers, skin care and overall attitude. I believe disability awareness has to be built into all university training courses across all areas of health. Hospital was accommodating, in most cases but, if I didn’t know my rights, hadn’t planned ahead and didn’t have the a ability to communicate my needs, the stay would have been impossible. I am so lucky I came out of hospital before Toowoomba became a hotspot. I would not have been able to have my family support and care team readily available on site helping to make everything possible and my care safe and doable. 

As a person with high level complex disability and specific needs with care I thought I knew the policies and way things could be done to ensure best practice and great outcomes. What I saw was huge gaps in education, awareness and attitude at every level. I could not get on to the CAT scan bed with my hoist and two carers helping, as well as the Radiology staff. I only had a very small window of time to live so the process had to done as fast and carefully as possible. I was relying on my two carers to show them my documented plan and use my hoist and also to ensure I wasn’t rolled or moved in any way to damage my neck and spinal cord.  Surrounded by wardies and the X ray staff my carers literally had to frequently remind them of my unstable spine issue so they wouldn’t roll me. The hoist wouldn’t fit under the cat scan bed, even though it was a new one, so they really didn’t know what to do. Vital minutes were ticking away. 

They then remembered they had a new piece of equipment – a hover mat that they could use. I could have CAT Scan and they could be done easily and safely. This took the pressure off the Radiology team and my often very short health requirements. If I could not have the scan we could not progress to the next stage of medical help. This piece of equipment is lifechanging for people who cannot transfer any other way onto a CAT scan bed or a X-Ray bed. It literally is like a hover craft that inflates from your bed and moves you across to the other space. It takes about five minutes in total and you are secured and safe. The only requirement is that the staff at the center know that it exists, first of all, and how to use it speedily and safely. I was so lucky that this was purchased by the hospital and that there were some staff who knew it existed. There was a team who worked together with my complex physical disability and high level sepsis that actually inflated the hover mat and moved me across to the CAT scan to actually perform the scan in enough time to ensure the next stage of medical treatment could continue. This piece of equipment is a life saver and we need to advertise the fact it should be available in every hospital. 

This was the first of many issues with equipment access and space. I only know that I would not be here if it wasn’t for some doctors and nurses who knew about disability equipment and support and also how to communicate and understand a person with high level disability and high level sepsis. It also needs to be said that without my carers and family helping with my advocacy and care this supportive situation would not have been possible. I might not want to say this and I believe I am very strong in this area, but when you are at your weakest you need plans and support to ensure best outcomes for recovery and survival. You also need equipment that enables you to get the required diagnosis and ensure that your situation is supported and your other areas of health are not damaged in any way. 

The new hover mat if a essential piece of equipment that makes the other essential areas of health such as cat scan, MRIs and X-Ray beds work for individuals who in the past could not access this safely and effectively. These type of innovation in the health sphere need to be celebrated and the information shared across all of our disability communities. There is constant research and equipment being developed and we need to push for more of this and also share our good news stories about how things work and when they don’t we need to question how we can have a solution created. 

To see how the hover mat works go to PDA’s YouTube channel by clicking on the link at the bottom of this blog. Don’t forget to subscribe to PDA’s channel whilst you’re there.

I have now recovered and am currently back at home and hoping that I stay healthy and can keep up my current workload. I am enjoying working with the Independent Advisory Council and my many other disability groups I work with. I never believed I would be actually givinglectures and zoom sessions about a first hand experience of life with disability in the covid-19 environment. (Some of them were very first hand, still being in hospital.)

It is so important to create positive change across health and especially for people with disability. There are many attitudes that need to be changed and also many disability issues to be explored and educated about. We need to continue to ask how we can make this health area more inclusive and more understood. We all have certain needs and things that impacts in this space because of our disability.  We need to break down barrier and create conversations so when we are at our weakest and most vulnerable the people who are tasked with our health recovery understand what they are dealing with and how they can help make life better for both sides. There was some very scary moments and without my support my recovery wouldn’t have been as smooth as it was able to be. 

Written by Tammy Milne – PDA’s TAS Associate Director

Phil and I met at the Footy Club in 1987 and his pick up line was a classic “I’d like to get you alone”. From this I deduced that with a line this lame he must be okay! He was 33 and I was 23 years old.

We were together for 33 years until his death on the 17^th May this year, 2021.  He was 66.

What makes our story different from other love stories and stories of loss and  grief?

 I am a woman with a physical disability.

Although this shouldn’t make a significant difference to our relationship or any relationship of love and loss it does.

Here is why.

As other people with disability will know the pressure of society, discrimination and the constant barriers put in the path both physically and psychologically take a huge toll on people with disabilities on a day-to-day basis and the cumulative effects can be debilitating resulting in lack of confidence and self belief. 40% of PWD live with depression while those without disability are only 8%.

Adults with disability are more likely (32%) to experience high or very high levels of psychological distress than adults without disability (8.0%). This is particularly true for adults with severe or profound disability (40%) (ABS 2019c)

So having a partner who supports your every endeavour with steadfast dedication and solidarity really helps to negotiate this world and support a partner to be a the best they can be. 

That constant reinforcement that you are ‘good enough’, you are, ‘clever’, you are ‘normal’ should be bottled and available to everyone. The quiet love that’s stands on your sideline and cheers for you regardless of the situation.  When this is gone, the memories and years of support are still there and the therapeutic work of their support is still there but they, the person, are not and the loss is huge. It’s like your team of two has been cut to one and a whole side of yourself has been taken away.

I’m not talking nasty co-dependency. I’m talking about the best of what kindness, love and genuine dedication to each other gives to a relationship.

So that’s the loss of the emotional support. So then add the loss of the physical support. The day-to-day jobs that as a partnership with one person disabled the other takes on; like checking the mail, like getting the newspaper from the driveway, like the million other little things they do that makes your life seamless. Even with NDIS support and support workers those jobs that seems to have been absorbed by the other as a matter of osmosis can not be replicated.

Even the simple fact of safety, of having that extra person in the house that protects you when a medical emergency occurs. If you fall or there’s a medical situation they can phone for outside help. The unpaid care that person has undertaken over the years of your relationship can never be estimated in monetary terms, but would potentially run into millions of dollars.

Our love was deep, dedicated and a bond of strength. We were equals. The gap left by this loss and the subsequent grief cannot be quantified as any more than an ABLEd relationship (a relationship where both parties are not disabled), but there is qualitative evidence in the need for additional physical supports and time will only tell if the loss of the emotional support will result in other supports being needed.

In conclusion a disabled/abled relationship provides both parties with a rich and full life. It cannot be argued that the relationship is not equal, but the loss, grief and emotional and physical support does impact and does result in a more raw loss for the disabled partner left behind and a unique perspective on grief and loss.

[From PDA: Dear Tammy. Thank you for sharing this tribute to Phil, your celebration of a relationship built on true love and your heartfelt and incredibly moving exploration of grief. On behalf of the PDA Family we send you our sincere condolences, love and support. RIP Phil. 💔]

Paul Williamson has joined Physical Disability Australia as an Associate Director for the A.C.T..  He has a strong interest in furthering the employment opportunities for people with disability, having experienced some of the challenges firsthand – going from ‘fit and healthy’ to living with disability in a relatively short period.

He has over 20 years of experience working in senior positions in the Commonwealth Public Sector across several Department’s including Finance; Industrial Relations; Employment; and Attorney-General’s.  He has worked on the development of key Commonwealth legislation, provided policy advice to Senior Officials, and administered multi-million-dollar grant programs.

In his late twenties, Paul was diagnosed with ankylosing spondylitis and while the disease is controlled by medication it has led to multiple joint replacements.  Paul also required brain surgery in his 30’s to correct anarteriovenous malformation (AVM) in the brain.

Paul holds a Masters Degree from the University of New South Wales and is an Honorary Associate in the Centre for Disability Research and Policy at The University of Sydney.

Welcome to PDA’s Board Paul. We look forward to utilising your vast experience and commitment to making a positive difference for Australia’s disability community.

PDA’s Tasmanian Director, Tim Marks, has made a short video showcasing his pod and the ease, simplicity and difference this has made to his daily life.

You can view it by going to:

Whilst you’re there, don’t forget to subscribe to our YouTube channel.

Written by Kathryn Lyons – PDA’s QLD Associate Director

For the last six months, whenever I got my menstural cycle, I would lose my voice. In the beginning it was only for 24 hours, but for the last three months my voice would disappear for weeks.  I would be talking fine and then the next second nothing. Not even a whisper. It is the most bizarre thing. 

Currently, it has been 22 days without my voice and it has been really hard trying to communicate with people. Auto correct has been very fun to deal with. 

At times I just feel trapped. When people don’t understand you and you cannot verbally communicate, it gets very frustrating watching others trying to guess what you are trying to say even if it’s the simplest thing such as “Hello. How are you?” or “Milo”.

I am currently using a text to speech app, but the voice sounds so sarcastic and nothing like me, giving a different context to what I want to actually communicate.  

I just feel trapped inside myself unable to speak out as I once could. 

But I knew I could not let this stop me from living. 

I had to adapt quickly and find a way to go forward with this!   

So, I kept streaming and changed things around where, instead of talking, I would play music and chat via the chat box with everyone and it has been working amazingly.

Still determined to break down the walls and taboos of the disability area, I started to branch out. I took up modelling, which is going well. In a few weeks I am going to be involved in an amazing fashion show where I will be on the cat walk – or as i like to call it, “Catwheeling”. 

I am still active in my advocacy work, raising awareness about diversity as well as public speaking. As I find different ways to adapt without my voice, I am determined not to let it stop me.

My main focus is to make changes within the community and around the areas of sanitation, hygiene and infrastructure – working on creating real inclusion. 

I even started going to the gym, hoping that through building up my core muscles my voice will one day return. 

However, even if this does not happen, I have learned that I can adapt to any situation. And so can you. 

Just because something happens or something in us changes, this does not mean we have to give up. 

We can keep going. Remember it is okay to feel trapped in yourself at times, so long as you keep going forwards. 

You just have to get up every day with a smile on your face and tell yourself “I am going to have a great day” – even if you cannot verbally say it!

No matter what challenges life throws at us, we are all strong and can get through it. 

I refuse to allow curve balls stop me from achieving my goals. I will continue to make change in the world and live my best life.

Alongside and in spite of my disability, potential ongoing deterioration of my medical conditions and life in general, I will continue to adapt and keep moving forwards. 

You can too!

Kathryn Lyons 💕

Written by Andrew Fairbairn (PDA Vice President/WA Director)

Previously I shared my Assistive Technology Home Modifications journey. This is an update, Part Two, if you will.

I engaged the services of an Occupational Therapist who has lots of experience in delivering comprehensive and high-quality Complex Home Modification, (CHM) assessments. She is very good at her work and the finished AT CHM document is a sight to behold. 40 pages of photos, recommendations and justifications for what I need. Very professional work.

From here I engaged the services of a Project Manager, (PM) to oversee the implementation of the CHM. His role was to do develop a scope of works (SOW), do all the plans, drawings, site layout, Local Government approvals and to put the job out to tender to building companies. 

I have been allocated a specific NDIA person to monitor the progress of the application and so far, she has been outstanding. 

So, where are we now as of 12 May 2020?

The SOW went out from my PM and he only got one builder from the five reply with a quote. The quote didn’t have the ramps I need, or the opening up of access to the master bedroom. I have just finished a walk through with the builder and had to explain to him what I actually required. The quote is now null and void, as it wasn’t inclusive of the above.

I emailed the PM to ask why only one builder had quoted. He said it was because of the housing boom in Perth and that they obviously had a lot of work and weren’t taking on anymore. I can accept that. I understand that.

BUT…….if I am in my chair, my CHM is life or death. If there is a fire in the house, I can’t get out. I can’t get to the toilet and I can’t have a shower as is currently the case.

This is not a problem that is going away anytime soon. I need the work done, but there is no one to do it. What can I do, except wait?

Finally, my NDIS plan is self-managed and have complete control of all my NDIS funding. Nothing will be done in my home that I don’t want, and I will be strong in my self advocacy to make sure that I get what I need. 

Stay tuned for AT CHM Part Three. What does the One-Legged Sax Player do when he doesn’t get what he needs?

by Melanie Hawkes – PDA WA Associate Director

Hi, my name is Melanie and I joined PDA as an Associate Director for WA earlier this year. It’s my second time on the board, having completed 2 terms many years ago. 

I thought I’d share with you what assistive technology I use regularly, and the names I’ve given them. Or more importantly, the men (and woman) I share my house with. I’m known as Gadget Girl, and you’ll soon see why! 

Assistance Dog – Upton (nickname is Buddy)

Not exactly AT, but my retired assistance dog Upton is a huge help for me at home. He does a lot of tasks, like picking up dropped items (including rubbish while out walking, even coins!); opening and closing doors (even the fridge, freezer and oven); pulling my shoes, socks, scarf and hat off; pushing me up by my elbow if I fall sideways; and putting things in the washing machine and bins and on the table or in the sink. I also feel safer with him in the house. As much trouble as he has caused me (he had to retire due to behavioural challenges and has several health issues), his skills are amazing and I would not be able to live alone with minimal visiting support without him.
Here is a video I made of all the things my last service dog Happy did: https://www.youtube.com/watch?v=eJ8TV_q3uxk. Upton’s skills are just as good, if not better than Happy’s were! 

HouseMate – Tom

While doing some research for environmental controls for a new house about 8 years ago, I came across a Bluetooth device called a HouseMate. It allows me to control my mobile phone without touching it, and is also an infra-red blaster. I can use my mobile (I have a Samsung S10) with my hand while sitting in my wheelchair, but at night I can’t. But now I have my phone mounted to the side of my bed and sleep with Tom. I can do everything on my phone, like send messages, make and receive calls, read my emails and ebooks and browse the internet. I only have to tap on the button on top of Tom to have full control (or you can plug a switch into him). It scans row and column for keyboard and has a mouse function too. It’s much slower than using my hand, but is invaluable for those sleepless nights or emergencies. And a bonus is that I can control all of my infra-red devices with Tom too! Like my stereo, fan, heater, TV, and my bed (I had TADWA modify my bed controller to work with Tom). It’s the best device I have, after my wheelchair. I don’t think I could actually sleep without Tom! And Tom, because when I was reading the manual, I kept seeing “The HouseMate devices” on the pages, and over time Thomas has gone to Tom.

Pet Tutor Pro – Pete 

Pete is a pet food or treat dispenser that I control with my phone through Bluetooth. It was the first thing I bought with my NDIS funds (I self manage my plan). You can fill it with any dried dog food, and I open the app on my phone, connect Pete and press Feed. I keep Pete on a chair near the mat at my back door, and use it when I get visitors, Upton has done something I want to reward him for, or to distract him from something, like my neighbour’s dog barking. It is so much quicker and easier than feeding treats by hand. It can run on batteries or plug into the power via usb. I like to be able to move it around, so have two power banks that I use with it. It is definitely Upton’s favourite device, and I’ve found him sitting on the mat waiting for his treat a few times! 

Pet Cube Bites 2 – Jill 

Jill is a wifi camera that dispenses dog treats! I just bought the new version from an old one I bought three years ago, to monitor Upton while I’m out. It automatically detects movement and sounds and records 10-second videos while I’m out (I activate that feature when I leave, and turn it off when I come home). It notifies me when sound is detected, and I can watch live and dispense treats from my phone. It has come in handy when Upton has had diarrhea during the night. He can open the door and get outside and do his business. Then I call him inside and he shuts the door so I give him a treat and can see him go back to bed. All on my phone without me getting out of bed! Oh and why the name Jill? Well my old one was Jack, because he was black – blackjack or Jack Black. And the new one is smaller, so Jill… And she has Alexa built in so I can now use my voice to dispense a treat (and got it on sale at 60% off)!

Philips Respironics CoughAssist E70 – Cam

Thanks to the NDIS for funding this last year. As the name suggests, it’s a cough assist machine (hence Cam). It has a tube that I put in my mouth (you can also attach a face mask) and it blows air into my lungs, then sucks it out of me again. It sounds awful, but feels good. I have low lung capacity and weak muscles so find it hard to cough. If I get a chest infection, I usually end up in hospital where I can get regular and intensive chest physio to help me cough up the phlegm. Cam should prevent that. My physio set up a daily preset, which enables me to take deep breaths and practise coughing. And another preset to cough stuff up (when I’m sick). Hopefully with daily use, I can improve my lung capacity and strengthen my cough muscles and prevent hospital stays. 

Samsung robovacuum – Sam 

I love my robovacuum! I don’t like the remote control that came with him (or her. It’s named after Samantha Jade or Sam Smith – Sam sung – of course!) but I taught the signals to Tom and now use my phone to control Sam. I only have a cleaner once a fortnight, and Upton is really hairy, so being able to vacuum my floors is important to me. I always use it like a remote-controlled car, following it around. It’s pretty fun, and my floors get vacuumed at the same time! 

Sicare Light II – Geri

Tom has superseded Geri, but I still use her (she has a female voice, so named her after Geri Halliwell) almost daily. She’s a voice activated remote control. She sits on a stand next to my bed (yes, I sleep with Tom and Geri!). I can control all the same devices that Tom does, plus a fancy home phone made by Technical Solutions Australia in Victoria. So I can dial numbers by name from my home phone, and answer calls by pressing a switch. It’s definitely old technology, as I got it well before Tom, but I still have a use for it. 

TicHome Mini – G-girl 

In preparation of Geri dying, I bought a Google Home Mini and some compatible wifi devices. I have 4 light globes in the rooms I use the most, a wifi double power point,  2 Genio Smart IR devices and now a wifi voice controller for my bed! I can use my voice to turn them on or off, change the colours or brightness of the lights, or use my phone as a remote control without Tom (handy for changing the channel of the TV). I also have an Anko video doorbell that I use to see who is out the front before opening my electric door. I call her G-girl when talking about her, as if you say Google she starts listening to you! She doesn’t always get the right command, but makes me laugh with her responses sometimes. 

IOGear cordless keyboard with trackball – Alicia or Ali 

At work I have a cordless keyboard with a built-in trackball that I love. So when lockdown started due to Covid-19 in 2020, I brought it home to use. I loved it so much that I didn’t want to take it back to the office! So I bought myself one for home. It’s compact enough to fit on my tray, the keys are easy to press and I have full mouse control too. And it’s cordless, so I can leave my desk without having to put it on the desk each time. And I named her after Alicia Keys, of course!

Edge 2.0 power wheelchair – ???

I haven’t actually named my wheelchair. It gets the most use of all my AT. It is my second chair with 6 wheels. I don’t think I’ll ever go back to 4 wheels as I do love how easily it turns. But not when people trip over the back wheels…  I have tilt, recline, elevation and legs up, but my favourite part of my chair is my USB port. It enables me to charge my mobile phone from my chair, and I also have an electric hand warmer for cold days! Please suggest a name for my chair. It’s purple, if that helps? 

As for more gadgets in the future, I’m thinking of getting a heated throw rug for my bed (that I can plug into a wifi plug and turn it on and off with my voice) and I’d love some way of washing my hands independently. I can’t rub my hands together so hand gel is not a solution. There’s nothing worse than being hungry and getting yourself a snack, knowing you’ve had dog hair, treats and slobber all over your hands! It’s a good way of increasing my immune system though. 

If you missed last Thursday’s first webinar in PDA’s 2021 Series, Elle Steele’s “10 Things you need to know to set up your own business in Australia and be successful”, you can now view it by going to the PDA YouTube channel.

Join PDA’s Elle Steele as she guides you through her own personal experiences and the valuable tools that she’s gained in her establishing and running a number of successful businesses.

This could be your first move towards your dream of financial independence in setting up your own business.

10 Things you need to do to set up your own business in Australia and be successful, including:

* What’s your reason for starting a business – your BIG why?

* Understanding what imposter syndrome is and how to work through it.

* Why systems are your best friend in any business.

* Why building a solid foundation at the start will set you up for success.

* Why you need to charge for your services (even at the start).

* Self-care practices for the new business owner.

Don’t forget to subscribe whilst you’re there.

Written by Talia Spooner-Stewart

On this International Women’s day, not only do we celebrate women’s achievement and raise awareness, but specifically in 2021 we are challenged to take action for equality. International Women’s Day (IWD) is being celebrated on March 8^th 2021 with the theme  #ChooseToChallenge. 

I am a proud physically disabled female, and I choose to challenge gender bias and inequality. What do you choose to challenge this year?

Many that know me will know my motto in life is don’t judge me by my disability but give me an opportunity to show you my ability. I think same could be said should we switch the word disability with gender. Don’t judge me for being a female, but give me an opportunity to show you my ability. Either of these phrases are relevant due to gender bias and inequality that women and people with a disability fight for every day.

IWD is a day that celebrates women’s achievements and increasing visibility while calling out inequality. This day is celebrated every year similar to International Day of People with Disability (IDofPWD)where we celebrate people with a disabilities achievements and increased visibility while calling out inequality of those with a disability. I am a firm believer that both of these days deserve separate celebration where it provides again an opportunity to call out inequality globally and show that it still exists all over the word. 

What would happen if we removed gender or disability from part of the equation? Could we ever get to a point where not only women, but those with a disability are included in all places where decisions are being made, not just being made for us? With continued unity, strong voices to stand for equality,  it is not impossible.

We will continue to reflect and celebrate these days internationally for many years to come as we are nowhere near a society that fully sees past gender, disability, race and or religion. I am happy to believe, because of the celebration of IWD & IDofPWD we see the world starting to move forward and becoming more inclusive and equal. We certainly are not there yet however we are starting to see pay equality in most areas, more inclusive workplaces for people to thrive in, celebration of women alongside men in all areas and positively the list goes on. 

Individually we can choose to challenge and call out bias and inequality. Individually we can all choose to seek out and celebrate individuals achievements. Collectively, we can all help create an inclusive world.

Read Libby Bingham’s newspaper article from today’s “The Advocate” (March 5, 2021) about Tammy’s efforts to improve Devonport’s accessibility.

https://www.theadvocate.com.au/story/7152464/on-a-quest-to-improve-citys-disability-access/

A wonderful piece written by our fabulous TAS Associate Director, Tammy Milne, in November 2020.

Well worth a read.

https://www.tasmaniantimes.com/2020/11/occupying-space-disability-politics/

It is with great pleasure that we announce Tim Harte as PDA’s new VIC Director.

Tim’s lived experience as an NDIS (National Disability Insurance Scheme) participant, disability pensioner and rural young person drives his commitment to empowering the voice and agency of people with disabilities.

Tim has tertiary qualifications in performing arts and science and has a background in disability, social & environmental justice activism and currently holds roles in Landcare, Australian Youth Climate Coalition, and the Deakin University Environmental Justice Club.

Tim is a Board Member of the Youth Affairs Council Victoria (YACVic), the peak body representing young people and the youth sector in Victoria, and is a member of the YACVic Youth Mental Health working group and the Commonwealth Children and Youth Disability Network.

Tim strongly supports the human rights-based model of disability and advocates for equitable access to services and meaningful participation and inclusion of people with disabilities in society.

Please join us in welcoming Tim to the PDA Board.

We look forward to working with Tim and capitalising on his experiences, energy and commitment to driving positive change in Australia’s disability landscape.

In supporting the disability community, PDA recognises and celebrates the potential value that self-employment offers in helping people with disability overcome barriers to work.

Research has revealed that “*people with disability are 40 per cent more likely to be self-employed than their able-bodied counterparts”.

If you’re a PDA Member and you’ve been thinking about starting your own business, have a business idea, want help in making your entrepreneurial move or simply want to learn about setting up a business, PDA’s first Webinar for 2021 may inspire you to take the first step towards financial independence.

Elle Steele is a successful entrepreneur, business owner, former Paralympian, Model, Optimist, Mentor and Motivation Queen.

As Presenter, she will provide the framework to setting up your own business and taking control of your employment options and your financial future.

This EXCITING FREE WEBINAR will be run on Thursday 25th March at 6pm AEST and you can register by clicking on the button below:

We look forward to seeing you there.

*https://probonoaustralia.com.au/news/2020/06/people-with-disability-turn-to-entrepreneurship/

PDA’s membership initiative for 18-30 year olds has rebranded and will now be known as PDA Youth Network. 

In line with this our online socials have also been renamed and will now be called “Hangouts” and will run monthly on the third Thursday of each month.

This decision was made following feedback and discussion from members and the Committee.

We believe that these new names positively reflect the importance and need for us to have our own community that understands our needs and wants.

With your help, we want to build up PDA Youth Network and make it truly representative of you, our fellow members.

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We also encourage you all to get involved with the running of our Youth Network and helping us to make it as big, relevant and successful as possible.

If you would like to play a role (big or small) or have a suggestion or idea, please get in touch with us either via our socials or by emailing promotion@pda.org.au.

We look forward to working with you to make PDA Youth Network a community that gets and supports young Australian adults living with physical disability.

💕 Kathryn, Jonathan and Nick

From Youth Network Committee Members – Kathryn, Jonathan and Nick

PDA’s 18-30 year old initiative has rebranded and will now be known as PDA Youth Network.

This decision was made following feedback and discussion from members and the Committee.

We believe that this new name positively reflects the importance and need for PDA’s younger members having their own community that understands the needs and wants of young Australian adults living with physical disability.

With your help, we want to build up PDA Youth Network and make it truly representative of you, our fellow members.

So we ask our 18-30 year old members to get on board and help. Whether this means joining one of our regular Zoom sessions (now every third Thursday of the month – see below*), getting involved on our committee, sharing your ideas, posting on our Facebook group page or inviting your friends to join our Youth Network.

Our *Zoom sessions will now be known as “Hangouts” and will run every third Thursday of the month at 7pm AEDT. Our next Hangout will be on Thursday 18th February and you can register at:

https://us02web.zoom.us/meeting/register/tZMrc-GqrDwpHdWVcSOD2mVq4XbwP9P2ZOv4

Catch up with friends. Make new friends. Get social. Have fun.

7pm Sydney/Canberra/Melbourne/Hobart
6:30pm Adelaide
6pm Brisbane
5:30pm Darwin
4pm Perth

Wherever you want to be involved, we welcome you to play a part in making the Youth Network as strong, relevant, fun and worthwhile as possible.

Send us an email at promotion@pda.org.au or a DM.

We look forward to working with you.

Kathryn, Jonathan and Nick

Written by Liz Reid AM

Happy 2021! It has certainly started with a bang. I would say many are more than happy to say goodbye to 2020. 

Some great things did however come out of 2020 for PDA with:

• * the establishment of the Youth Alliance for young people with a physical disability aged 18-30 years to be the voice of young people
  our membership increasing significantly
• * our social media presence growing to exceed our expectations
• * the appointment of PDA’s Inaugural Ambassador, Dr Dinesh Palipana OAM
• * establishing regular online social hours for members to connect during COVID-19
• * and the PDA Self-Management project’s how-to website – to be launched soon. 
• * PDA making submissions to many government consultations
• * our reaching out to members to identify gaps, facilitate solutions and provided advocacy for members individually and systemically to ensure their human rights were being supported and protected. 

I would especially like to acknowledge the skills and talents of outgoing Director for Victoria, Elle Steele, and Associate Director for Western Australia, Matthew Lee, for their fabulous contributions and commitment to afford the rights and freedoms of people with a physical disability. Thank you both for all you have done! 

A big welcome to Tammy Milne, Associate Director for Tasmania, and Melanie Hawkes, Associate Director for Western Australia. We are thrilled that you have joined the PDA Board and look forward to a productive year ahead!
Thank you to also to our members who attended our AGM at the end of 2020. It meant and means a great deal.

As we start to think about PDA’s work plan for our members, valued partners/stakeholders and what is important to you in 2021, we need to hear your thoughts, issues, and priorities. I encourage you to email Simon, PDA Manager @ Manager@pda.org.au or Natasha, Promotions @ Promotions@pda.org.au . If you know of people with physical disabilities and their supporters who would find value in being a member of PDA, please share the link to our website for free membership https://www.pda.org.au/membership/ .

In 2021 we will continue to advocate for the many Australians with disability who are ineligible for the NDIS and the supports it provides. Therefore, it is extremely important to advocate for the new incarnation of the National Disability Strategy post-2020 that is robust, responsive, and effective as the Federal Government’s disability policy centrepiece – so that all Australians with disability can have their needs met.

Social Hour via Zoom will be returning with a new flavour on the first Monday of the Month and the Youth Alliance Social Hour will also continue to be run, but will be moved to a monthly slot on the third Thursday of every month. Stay tuned to our Facebook pages for more information.

Elle Steele in coming weeks will be hosting a webinar for our members about setting up and running a business. Please check our PDA socials for more information.

Reflect, Respect, Celebrate… these words have different meanings for so many people! As we approach Australia Day, we can reflect on our nation’s story knowing that it began more than 65,000 years ago. First Nations Australians are the foundation of our nation’s story and an important and empowering part of our shared history for the entire nation. It is important that we acknowledge our complete history, its impact on our first peoples and that we pay our respect to all those who sacrificed and paved the road to where we are today.

Australia Day is when we can all come together, acknowledging everyone’s personal journey, paying tribute to our diversity and celebrating us and the great country that we live in. It is important that in doing so we also continue to promote reconciliation and multiculturalism. Together celebrating our progress as a vibrant, united and progressive society – not just this day but every day.

The countdown is on for the Australian of the Year Awards. Congratulations to all the worthy 2021 nominees from all States and Territories. The Awards will be broadcast live on January 25 7:30pm (AEDT), 6:00pm (ACST); 7:00pm (ACDT) & 4:30pm (AWST) on ABC TV and iView. 

Starting in 1960, the Australian of the Year Awards has four categories; Australian of the Year, Senior Australian of the Year, Young Australian of the Year and Local Hero – each recognising outstanding achievements and contributions to our nation. 

A big shout out for PDA’s Ambassador, Dr Dinesh Palipana OAM, Advocate for Doctors with Disabilities and QLD Australian of the Year 2021. Our thoughts and well wishes are with you and your family at the awards. PDA is incredibly honoured and privileged that you are our Ambassador amongst your incredible support to many causes. To be a nominee and finalist is a huge accolade!

I would like to finally add a thanks to our part-time team made up of Simon, Trish and Natasha who are continually coming up with creative ways to support PDA and our members, putting in more hours than we are funded for in many instances!! Thanks also to all the Directors and Associate Directors who volunteer their time and passion for an equitable Australia!!

As always take care & keep safe.

Liz

Tammy Milne is another recent and valuable addition to the PDA Board.

She lives on the North West Coast of Tasmania.

Living with Arthrogrophosis Multiplex Congenita, she brings lived experience of disability and a strong passion for disability and human rights to the PDA Team.

Having been with the Department of Education Tasmania for 32 years she has many strings to her bow – working as teacher aide, educational interpreter for the Deaf,  Intern Teacher and Librarian. 

Recently resigned, she looks forward to her work with PDA and continuing to be a “fierce warrior” in standing up for and supporting the disabled community.

Welcome to the PDA Team Tammy!

PDA is proud to welcome Melanie Hawkes to the role of Associate Director for Western Australia.

Melanie is a wonderful addition to the PDA Team, with extensive experience in the disability sector and with a professional background working in media and corporate communications.

She is also fluent in Japanese, enjoys socialising with friends and family, attending concerts and events and spending time with her much-loved, retired assistance dog.

It’s a pleasure and honour to have you involved on the PDA Board Melanie. Welcome!

Maggie Coggan from Pro Bono Australia has written a great article about PDA President Liz Reid.

It’s an insightful read about Liz, her story around who she really is and the motivation behind her dedication to ensuring social justice and that everyone is seen and respected.

https://probonoaustralia.com.au/news/2021/01/fighting-for-fair/

Written by Elle Steele – PDA VIC Director

Boundaries.

It’s a bit of a buzzword isn’t it? 

I remember hearing it from my psych. She said to me “Elle, you have no boundaries. This is why you feel the way you do. Let’s fix that.”

Even though I’d been an athlete for so long, boundaries had never really played a huge part in the lead-up and recovery from training or any major event, or so I thought. If I think back now, I probably was doing my fair share of it, but it all related back to swimming so it was never a holistic approach.

During the 13 years I was on the Australian team, I had colds, my nose was always running, I had dry skin and aches all over from pushing my body to the limit. But now, I’ve learnt to be a LOT more balanced in my ‘pushing’ with daily self-care practices in place so that I can at the very least get up the next day. For me, self-care and boundaries go hand in hand. I want to share some self-care tips with you for the end of year holidays. 

1. Learn to say ‘no’. 
   Yep, I’m starting off with a big f..ing NO. You know why? You are worth more than doing the things you hate. You are worth more than hanging out with people who are toxic. And you are worth more than watching negative shows or anything that makes you feel anxious. The same goes for seeing people over the holiday period that you don’t feel so great around or doing things that make you feel uncomfortable. Just because you’ve always done something, doesn’t mean you have to keep doing it. 
   
   
2. Don’t count your calories.
   Yep, I said it. Do.not.weigh.your.food.you.are.not.a.race.horse. Our bodies change all the time. Don’t hold yourself to something that was yesterday or could be in your future. Enjoy you now. Stop trying to be something else or have a different number on the scales. You’re doing amazing. I used to be 53kgs and I was never happy, I was sick all the time and my mindset was terrible. Now, I know I’m carrying some weight, but my insides, mind, and body are getting healthier every day and the most important thing is I love who I am, in the now, all of it. No amount of food weighing will make up for any lack of self-acceptance. Enjoy the food over the holidays and love yourself enough to eat what makes you feel good. 
   
   
3. How you finish you year of work isn’t how it’s always going to be. Well, 2020 was fun wasn’t it? Remember, if you finished the year slightly ‘less than’ you’d hoped doesn’t mean squat. You’re on an adventure. You haven’t reached your final destination yet. Think 2021 is for creating connections. Creating content. Creating a life that you don’t need a holiday from. This includes having really strong boundaries for yourself in your life all year round. My advice to you is “always follow joy, in all that you do.”
   
   
4. Self-care looks different to everyone.
   There is no right or wrong way to self-care or set boundaries. I was once told that resting my body and watching a movie wasn’t the ‘right’ way to do self-care. I’m sorry, who said it wasn’t? The self-care police? P.S If you’re still hanging with the self-care police, please refer to point 1).
   
   
5. Take time out from all the noise at least once a day.
   Meditation comes in different forms, so you do “you”. Whatever feels best for you and allows you to switch off and breathe, this is the best way for you to meditate. This may evolve over time, but if it doesn’t then that’s also ok. Some days I meditate to silence. Some days I draw. Some nights I light candles, pump ancient drumming music and dance. Some days I swim. Some days I chant. Whatever makes you feel good is what’s best.

Now, go and do what makes you feel good over the holidays.  

Following PDA’s successful and well attended AGM, elections were held for the Executive Board that saw the existing team returned to continue their great work.

Liz Reid * President
Talia Spooner-Stewart * Vice-President
Andrew Fairbairn * Vice-President
Jonathan Shar * Treasurer

Congratulations!

We would also like to thank all of our Members who joined us at last Saturday’s AGM. It was wonderful to see so many of you attend and we look forward to your involvement in the next 12 months and beyond.

Tomorrow PDA will be holding its Annual General Meeting via Zoom and invites all its members to be involved.

To attend you will need to register in advance by going to:

https://us02web.zoom.us/meeting/register/tZEvdeqgqj8vHN2KTYutqbP2wIJ8oPNvfNXe

The PDA Board and Team would love you to join them to hear what they’ve been up to, what PDA has planned for the future and just to be part of the conversation.

3:30pm Sydney/Melbourne/Hobart/Canberra

3pm Adelaide

2:30pm Brisbane 

2pm Darwin

At a ceremony in Brisbane earlier this month, QLD Premier Annastacia Palaszczuk announced that Dinesh had been named as QLD Australian of the Year 2021.

“Dr Dinesh Palipana knows no barriers,” the Premier said. “He is a truly inspiring person and a much-deserved recipient of the Queensland Australian of the Year Award. Dr Palipana was the first quadriplegic medical graduate and medical intern in Queensland and was also recently admitted as a lawyer. As co-founder of Doctors with Disabilities Australia, he helped create national policies for inclusivity in medical education and employment. He speaks, writes and advocates for the equitable treatment of people with a disability, and he has contributed significantly to the advancement of treating spinal cord injuries and restoring functions for people with paralysis. I warmly congratulate Dr Palipana as the Queensland Australian of the Year.”

We wish Dinesh all the best in the national Australia Day Awards in January.

by Sharon Boyce – PDA QLD Director

Sharon Boyce is PDA’s QLD Director and well known and respected for her work in educating the public about disability inclusivity and awareness.

This video is about accessible transport and the way in which her much loved car has opened up her community, her options, her opportunities and her world.

To view please click below:

Written by Jonathan Shar

If we are to take anything positive out of the whole COVID-19 situation, I believe that we have become a more cohesive and united community through being brought together by platforms such as Zoom.

Whether through being involved in  PDA’s fun fortnightly Social Hours (see below for registration link) or doing therapies via Telehealth, we should be proud of the sense of belonging and community we are creating and hope to maintain when life returns to normal (hopefully sooner than we think).

As someone who at times has struggled with social isolation and longed to be a part of a community, when I do login to a Zoom chat or YouTube live stream I feel like I’ve almost come home because being around people that understand the challenges and triumphs of disability life is healing. 

In saying that, my main concern is how can we maintain this into the future. Will and should technology play a bigger role in how we include and embrace people with physical disabilities?

One thing I will be pushing for is for all organisations who work in the disability space to work more collaboratively. Whether you’re a service provider, part of a peak body or community group, we need to work together – regardless of how or who you’re funded by. 

This will enable better outcomes across the board for the disability community, the members and the very people we represent, because without them we are nothing. “Nothing about us without us” may be one of the most overused quotes in the disability rights movement but during these times I feel as though it has taken on a new meaning.

In the era of #BlackLivesMatter, #MeToo and the violence, abuse and neglect being uncovered by the Disability Royal Commission, one could assume the collective trauma from all three would foster divisions, however the opposite is being shown to be true.

It is a shame that it took the appalling abuse and callous neglect of Ann-Marie Smith to unite our community in a call to action. It’s important for us to channel our frustrations into something positive, instead of stoking divisions. Let’s make this an opportunity to strengthen disability rights and encourage politicians to truly put disability on their agendas – not for votes or popularity, but to truly bring about tangible reform.

If you too feel frustrated and passionate about this issue, I encourage you to use social media to start a conversation, talk/write to government agencies and leaders of disability services. Do not beome demoralised, by negative answers or lack of response. Simply continue to knock on doors and keep the conversation going. 

Together we are louder.

Join PDA, join one of our Social Hours, become part of the conversation and let’s work towards improving the lives of all Australians living with disability.

To join one of PDA’s fortnightly Zoom sessions (held on Mondays), please register at:

https://us02web.zoom.us/meeting/register/tZMvdeCvqT0iGNIHANOwSpCJDs6Yg_iN8tAo?fbclid=IwAR37vPFdtHijzzInqwjHDE8hWoC1DuIq5D2yYrSSR9fEzhXf1xxidmi7iZ8

Author’s name withheld on request

If someone was to ask me about my understanding of bullying, a few weeks ago I would have reflected on the time I bullied our workshop apprentice whilst the older men around us cheered and berated the poor guy.  Thank you for refusing to put up with my misguided anger Scooter, you were stronger than me at that time.

I may have also reflected on my children’s experience halfway through high school.  They were ostracised from their group of friends due to the boredom of a couple of kids and the belief of their parents that, if my children put up with it, it would resolve itself.

The last place I expected to be bullied though was in an Australian public hospital.

I best include a little information about myself so you can better understand the situation I have found myself in. I am in my early 40s and have been a high-level quadriplegic for the past 20 years. I have a severe pressure wound that has had me restricted to bed for the last eight months or so, 24/7. The chronic pain I have suffered since I got my disability has proven to be one of the biggest hurdles I’ve had to overcome. For the past eight months I have been experiencing bouts of a condition known as autonomic hyper dysreflexia – a potentially life-threatening medical emergency suffered by a small amount of spinal-cord injured people with symptoms that include high blood pressure, pounding headache, flushed face, sweating above the level of injury, goose flesh below the level of injury, nasal stuffiness, nausea, tachycardia and high blood pressure. I also had a soul crushing migraine that would make me wish that I was dead. 

One of the unfortunate facts about autonomic hyper dysreflexia is that it is misunderstood and practitioners do not typically have any knowledge of how to deal with it. For example, every time I was admitted into hospital I had five ward doctors standing around me uncertain as to what to do to relieve the situation. 

It had been decided by my nursing network and a number of health professionals who had been reviewing my wound progression in my home, that I must attend a hospital emergency department due to the high possibility that I may suffer an uncontrollable attack of this condition and die. I had my support worker pack a bag for me and I called an ambulance during the early evening.

As I was waiting to be processed and assigned to an appropriate ward so that I could receive appropriate treatment from a physician with some expertise in my illness, I was approach by an irate doctor swinging her arms around in an aggressive manner, trying her best to intimidate me and make me go home. 

She made it quite clear that I would not be getting any treatment on my wound through the hospital. She continued by asking me what I expected the hospital to do about my situation, to which I replied “I don’t know what you can do for me, I just know something needs to be done because I am not safe at home and I believe the hospital is the only place for me to be where an appropriate plan of action could be made.”

Unfortunately, as I have learnt over a 20 year period dealing with the public hospital system, this sort of response is not uncommon. The chronic health concerns of people with disability are deemed too hard to deal with and this is somehow my fault.

At that point I had to do what is the only course of action available to resist this form of bullying and intimidation: stand my ground. I refused to just go home and asserted my right to receive treatment for a life-threatening injury which eventually resulted in my being admitted to have my condition stabilised and assessed. I still have a way to go and I anticipate further battles to get my needs met.

I understand that hospital emergency departments are stressful places and that the Coronavirus pandemic has only increased the pressure felt by the people who work there. But this does not justify the mistreatment of people with needs that are different to the patients they typically deal with and we must not accept it.

Written by Jonathan Shar – PDA Treasurer/NSW Director

I don’t know about you but if we are to take anything positive out of the whole COVID-19 situation, it is through adversity I feel like using platforms like Zoom, we have become a more cohesive and united community.

Whether it be our PDA Social Hours (register at https://us02web.zoom.us/meeting/register/tZMvdeCvqT0iGNIHANOwSpCJDs6Yg_iN8tAo) or doing therapies using Telehealth, we should be proud of the sense of belonging and community we are creating and hope to maintain when life returns to normal (hopefully sooner than we think).

For me as someone who from time to time has struggled with social isolation and longed to be a part of a community, when I do login to a Zoom chat or YouTube live stream I feel like I’ve almost come home because being around people that understand the challenges and triumphs of disability life is healing. 

I guess in saying that, my main concern is how can we maintain this into the future. Will and should  technology  play a bigger role in how we include and embrace people with physical disabilities?

One thing I will be pushing for is for all organisations who work in the disability space to work more collaboratively, I personally don”t care whether you’re a peak body, service provider or community group, we need to work together regardless of how or who funds us. 

All that really drives us is better outcomes for the members and people we represent because without them we are nothing. Nothing about us without us may be one of the most overused quotes in the disability rights movement but during these times I feel as though it has taken on a new meaning.

In the era of #BlackLivesMatter, #MeToo and the violence, abuse and neglect being uncovered by the Disability Royal Commission, one could assume the collective trauma from all three would foster divisions, however the opposite is true.

It is a shame that it took the appalling abuse and callous neglect of Ann-Marie Smith to unite our community in a call to action, the point I am trying to make is let’s channel all of this frustration into something positive, instead of stoking divisions, let’s make this an opportunity to strengthen disability rights and to politicians with a disability, we want more than talk, we want action and tangible reform that will actually be implemented.

If you feel as frustrated and passionate about this issue, use social media to start a conversation, talk to leaders of disability services and government agencies – but if you get a negative answer don’t get demoralised.

At PDA we are here for you, remember to join us for Social Hour and even become a member.

Written by Andrew Fairbairn – PDA Vice-President/WA Director

Once upon a time there was a guy who was a left below knee amputee. 

In January 2019, he applied for, and was given access to the NDIS as a participant. He was very excited about this because he and others had lobbied hard for this Scheme.

In his first plan, built by an NDIA Planner who knew nothing about amputees,  he was given ample Capital Support Funding to provide a complete rebuild of his everyday prosthesis,  a brand new, complete fully water proof prosthesis and a very expensive custom wheelchair, complete with a set of off-road wheels and a free wheel device for him to use when he goes camping, which is one of his big goals.

He was given Capacity Building funds to employ an OT to do a full Functional Capacity Assessment. He went through this process and it was identified he needed to get a wheelchair and the new prosthetic limbs, among other things AT.

It was identified that in the next plan Home Modifications Capital Support funding should be asked for and granted as reasonable and necessary. The OT did all that was required of her with regards to documentation, photos and justifications for the next plan.

To say he was happy, is an understatement. He is working in the disability industry, is a passionate advocate and activist and a leader in the Amputee community. He knows the NDIS is very good for his community and continues, despite its flaws and failings, to promote it and extol its virtues.

In January 2020 he had a plan review asking for the Home Modification process to be started and asked for funds to start the process as was identified in the FCA completed in 2019.

The plan was sent to the Delegate for approval at the end of January 2020. The plan was approved and arrived in his My Gov account on the 19 January 2020 and he sent it straight back for S100 review due to the omission of the asked for Home Modification Capital Supports.

In April 2020 he received an outcome of the S100 review stating, amongst other things,  “I am not satisfied that there is sufficient evidence at this time to make a determination as to whether the requested support represents value for money” and “I have assessed this support against each of the criteria in section 34 of the NDIS Act, and I am not satisfied that your request is reasonable and necessary.” This is his personal favourite,” “I am not satisfied that there is sufficient evidence at this time to make a determination as to whether the requested support is effective and beneficial.” To date, he is still fighting with the Agency to get the Home Modifications completed.

The One-Legged Sax Player is a nice guy. He works hard, He is a husband, a father, a colleague, a friend, a confidant, a board member, a speaker, a teacher, an advocate and an activist. He is well regarded in his community and works his butt off for them with little or no reward.

He has paid taxes since he was 15 years old and has served his country in the Royal Australian Navy, so it begs the question, on what planet does a ramp covering 4 steps and making accessing his house in a wheelchair, not reasonable, necessary, effective or beneficial?

It is with deep sadness that we share that Ms Sue Salthouse has passed away.

Known, loved and respected for her lifelong dedication as a disability advocate and beautiful soul, Sue’s passion, generosity and zest for life will be remembered and treasured.

Sue’s accolades included:

• Member of the Independent Advisory Council (Council) to the National Disability Insurance Scheme (NDIS) from 2017-2020.
• Recognition as a prominent member of the Canberra community.
• Recipient of the 2020 ACT Senior Australian of the Year – for her work advocating for women with disabilities.
• Canberra Citizen of the Year in 2015.
• ACT Senior Woman of the Year in 2014.
• Tireless social justice/human rights worker – focusing on the issues of gender and disability discrimination (particularly in regards to women with disability).
• Chair of Women with Disabilities ACT.
• Director of Women in Adult and Vocational Education (WAVE) and Rights & Inclusion Australia.
• Chair of Advance Personnel (Disability Employment Service).
• ACT representative on the COAG Advisory Panel (2015-16) working to reduce violence against women and their children.
• Member of the governing Council of the University of Canberra.
• Immediate past Chair of the ACT Disability Reference Group.
• Sharing her passion for improved access to assistive technology supports. Through providing significant advice on the topic, Sue strove to help people with disability live their best life possible.
• A loved and valued Member of PDA.

Liz Reid, PDA President, paid tribute by saying “Sue was a total icon and mentor for women with disability. She was passionate, strong and had the most amazing way with words. An eloquence that captured the beauty and magic of life, whilst insisting that those living with disability were heard and included in the conversation. She will be forever missed, but never forgotten.”

We send our sincerest condolences to her family and friends.

RIP Sue. 💖

Sharon Boyce is a hardworking disability advocate and PDA Board Member, who has been appointed to the NDIS Independent Advisory Council (IAC).

PDA President Liz Reid will continue to provide representation for those living with physical disability, having been reappointed to her role with the IAC.

Formed to represent the voice of NDIS participants, the IAC advises the Board of the National Disability Insurance Agency on the most important issues affecting participants, carers and families. 

Comprised of 13 members the IAC represents a wide range of disability and advocacy sectors, bringing their own lived experience or expertise of disability.

Congratulations Ladies.

We can all be assured that your involvement within the IAC will ensure that PDA, its Members and all Australians living with physical disability (and all other disabilities) will continue to have a strong, informed and true voice.

For more information on the IAC go to https://www.ndis-iac.com.au

Written by Elle Steele – PDA Director (VIC)

I was a little unsure of what to write for this piece, I haven’t been working in the disability industry consistently for a long time. I’ve had the odd job and written some Disability Action Plans in my day, and of course, I have a physical disability so there’s that.

But yesterday, as I’m still grappling with the topic to write about, something really interesting happened on my personal Facebook page. For some context, I work as a business coach for mainly people identifying as women (it’s just turned out that way) in the spiritual and wellness industry. Yesterday (June 21) was a New Moon, which is the first moon of a new moon cycle and in the space that I mainly live my life in. This is when you set your intentions and goals for the month.

So, I posted this on my Facebook profile; ‘Maybe one of your new moon intentions could be to diversify your feed, the people you work with, your podcast guests, your friends’ list to include people with disabilities too?’ 

The post spent the day being shared and liked by various friends and people that work in my industry until about 6pm when I received this comment, “I never saw you with a disability. Never thought of you as different. You were just Elle. And Elle was you. It feels weird for you to use that word about yourself. Also, I miss working with you, however briefly it was❤️ “

Now, this is a genuine comment, this person is lovely and doesn’t see anything wrong with what has been written here and, in the past, I would have glossed over it and got on with my day. But, as I’ve grown more into myself and learnt to embrace all parts of me, I now realise how this way of looking at disability can be a problem and why we as a cohort continue in many ways to live a life of invisibility. 

Is it that people think that by ignoring the disability or the thing that makes them uncomfortable that they won’t have to acknowledge it? I for one want you to see it, get to know it and research disability, because I’m not your teacher, but you can be my ally. 

Our difference is what makes us unique and beautiful. It also gives us our power, teaching from a place of personal awareness and self-acceptance. 

written by Sharon Boyce – PDA Director (QLD)

My name is Sharon Boyce and I am on the Board of Physical Disability Australia. I am also an author, educator and disability advocate – wearing many different hats and performing many different roles that I never imagined I would be a part of. I am the Advisor to the Queensland Disability Minister and Chair of the Queensland Disability Advisory Council. I am also a part time education academic at University of Southern Queensland (USQ) completing my PhD and a consultant in disability awareness.

I was diagnosed with Juvenile Chronic Arthritis at 11 and have used an electric wheelchair since I was 21. When I was diagnosed I never imagined the impact and change this would bring to my life. I went from a child who never stayed still and who was on every sporting team possible to a very different world. Limited in some ways and expanded in others, but as a person living a very changed life. I had no idea about disability and did not want to acknowledge or be part of anything that was different.

That has certainly changed over time. Through my journey I have explored and discovered many areas. I have become more involved within the disability community, working across many areas to promote a true understanding of disability and diversity. I explored my hobbies of art and music and these became new passions for me, giving me a creative outlet that I had not realised was possible. I have had the chance to exhibit, sell my paintings and also just paint for fun. Music and singing has also been central to my world. I have always felt very lucky that my mum had encouraged this – taking me to music lessons and putting up with my practice since I was four years old. These skills have proved useful in my life especially my work in radio, where I got to  interview singers and review movies for over ten years.

I am committed to creating a world where real lived inclusion is possible. I believe that through real hands-on education and experience, and through sharing my story and the stories of others, that barriers can be broken down and real understanding can be achieved. This is real disability awareness.

As time progressed I felt there needed to be more information and understanding about what disability is and how it impacts on individuals in our community. I developed a “Discovering Disability and Diversity” hands-on, experiential awareness programme which enables students, teachers, carers, doctors, health workers and the general public to experience and explore a wide range of disabilities. You can read more about this at www.discoveringdisability.com.au.

PhD Research into dyslexia and educational inclusion and running lectures at USQ have also given me the opportunity to enable others to explore and understand a little more about physical and hidden disabilities, dyslexia and creating inclusive curriculum, pedagogy and workplace support. Through educating others to understand that not all disabilities are immediately obvious, I believe that society will be discouraged from making assumptions and drawing inaccurate conclusions.

I have written a number of books, recently launching “Discovering Dyslexia” with the Queensland Disability and Education ministers. I have also designed an educational resource kit called “Another Day in the life of Sharon Boyce”,written a children’s book called “Discovery at Paradise Island” which is now part of the NSW School Syllabus.

These experiences and opportunities have brought a richness to my life. I am committed to creating a world where real lived inclusion is possible. I believe that through real hands-on education, experience and through telling my story and the stories of others, barriers can be broken down and real understanding can be achieved. Enabling better understanding and empathy that initiates conversation about disability access and inclusion, ultimately working to breakdown barriers.

Born with no disability, I never would have believed this would be my life now and that creating an understanding of disability and sharing my story would be central to who I am. My own acceptance and acknowledgement was key to this.

I believe that together we can create inclusive communities through enabling us all to live our best lives. 

Congratulations to Liz Reid for her deserved recognition, having been awarded a Member of the Order of Australia (AM) Medal today.

Liz’s outstanding commitment and contribution as an advocate for those with a limited voice (or often those without a voice), has been shown in her work to ensure that that all Australians are afforded the same rights and freedoms – regardless of ability, circumstance or challenge.

Her contribution includes, but is not limited to, her involvement as PDA President, Chairperson of AFDO (Australian Federation of Disability Organisations), Executive Officer of YouthWorx NT, Northern Territory representative on the NDIA Independent Advisory Council, Community Representative for the City of Darwin, Access and Inclusion Advisory Council and Board Member of the Industry Skills Advisory Council NT.

So proud of our Liz and her incredible contributions.

This year as part of our ANZAC Day tribute, we share the story of Damien Thomlinson – an Australian Defence Force Veteran and double amputee and PDA’s 2020 Face of ANZAC.

PDA gratefully acknowledges Damien for allowing us to share his story with you.

Damien Thomlinson may be a familiar face with a familiar story.

A proud Australian, husband, father, motivational speaker, brand Ambassador, accomplished sportsman, the first amputee contestant on popular TV show Survivor, best-selling author and Hollywood actor.

However, much of this page in his history book stems back to his time as a Commando in the Australian army.

Having served for a number of years on a number of deployments, it was whilst serving in Afghanistan that his life changed forever.

On a late-night patrol in April 2009, Damien’s unit drove over an improvised explosive device, planted by the Taliban. The force of the explosion resulted in catastrophic injuries that left him with facial injuries, both of his arms severely fractured and both legs being amputated. There were many times during the immediate treatment of his injuries, that his medical team were unsure as to whether or not he would survive. The fact that he wasn’t killed in the explosion or whilst hospitalised is still seen as something of a miracle.

The chapters which followed showed the true strength and determination of a man, who refused to give up, who refused to allow what had happened to lead him down a path of depression, despair or defeat.

Giving up was not an option for Damien. It is not in his nature.

Instead, he decided that the loss of his legs was simply another challenge for him to overcome.

Damien’s positive attitude and refusal to quit spurred him on, bringing many opportunities that have allowed him to inspire, motivate and resonate with many people.

He has since married, become a father, written a best-selling autobiography, become one of Australia’s most successful motivational speakers and been a cast member of the Academy Award winning movie Hacksaw Ridge.

Despite all these responsibilities, he is actively involved in many important causes that support other brave and selfless defence force members, now facing their own personal challenges.

Damien’s incredible journey upholds the belief that challenges can be overcome with determination and drive.

He is testimony that the ANZAC spirit is truly alive and well.

Lest we forget!

Tim Marks is on PDA’s Board and has recently had his new wheelchair, smart drive and wheelchair pod delivered.

He has very kindly shared and reviewed these exciting additions to his life with us.

To view these click on these links:

Thank you so much Tim.

We truly appreciate it.

by Nina Crumpton – PDA Associate Director (NSW)

As someone living with Primary Progressive MS and Bronchiectasis, (lung disease), I am someone who could very well be classified as High Risk were I to contract this infection. This fact has caused me to consider what that could really mean for me over the course of the weeks and months to come.

I could die. That is the harsh reality, my reality. That thought alone could be enough to induce fear and paralyzing anxiety in me. I have read media reports that if it came down to a choice between my life and that of an able bodied person in ICU, I may draw the short straw and lose the lottery of life which is a terrifying prospect.

Knowing this, I have chosen to regulate my emotions and remain calm and rational and to employ logic not fear. I have chosen to plan and prepare as best I can for any eventuality that may arise. I have also chosen to only control the things I can and to let the rest go.

As the saying goes, “Stay Calm and Carry On!!

I am indeed fortunate in many ways. I have secure employment in a job I love and I am able to now work from home. I have a secure home and a good support system. I  have no personal/household debt which is very comforting in these challenging times.

The NDIS has allowed me to have the supports I need to live an ordinary life and I wouldn’t be who I am without that framework around me. It has given me the ability to work, study, access the community and travel. My life has opened up in so many amazing ways so when the pandemic hit, I made a conscious decision not to reduce supports but to modify the delivery of the supports in a way that would still support my mental and physical health.

I am now only leaving the house to exercise and for essential medical appointments really. I choose to minimise my risk of infection in this way and to be honest, I am really enjoying the quieter pace of life. I am reading books, taking my dogs on leisurely walks and napping every day. I have no hurry to rejoin the rat race of life and I am actively questioning if that is even necessary at all.

Is this a fundamental shift in the way we live or a temporary pause before we once again are infected with the disease of busyness?

Stay safe, wash your hands and be kind xx

Written by Kathryn Lyons, PDA Associate Director

Throughout our lives we all experience highs and lows. We can feel trapped in our minds, bodies and spaces. Sometimes we choose an alternate reality to escape from what is happening in the world around us. Having personally experienced this, let me share a part of my journey.

I was born with a progressive and degenerative disability that impacted on my life in multiple ways. Initially, I was able to walk and physically capable of many things, as puberty hit my body changed so drastically; I ended up in a wheelchair. Learning to live with the complexities caused by the physical side of my disability became a new challenge.

This was a major life changing moment for me. For example, 12 years ago I could figure skate. Two years later, my body deteriorated to a level where I became bedbound, unable to transfer or care for myself independently.

I couldn’t understand WHY this was happening to me. Why, I had such intense pain. I was confused. I quickly went from a happy teen who would smile and talk to people into someone who felt trapped. Not only within my body, but isolated within the four walls of my room.

My confidence had decreased. I didn’t know who to turn to. Feeling like my whole world had crumbled around me, I started developing depression and I needed to find a way to distract myself quickly.

So, I got a computer and started living in virtual worlds, by joining alternate universes. I would game with them from across the globe on mass multi-player online games, instead of physically being around people. This online existence meant I could do anything, and it opened doors within my mind. It started to simulate the feelings of walking, dancing, and even figure-skating again. I had no restrictions and it was amazing! I could travel anywhere and in any time. I was losing my sense of reality.

For 7 years, I lived in these new worlds thinking I was happy, only really emerging when it was necessary. Over a period of time I started to realise that this was not healthy. I had to come to terms with the way my body had changed. Needing to grow mentally, this altered my perspective and reshaped my attitude around disability. My first steps were to accept myself and the freedom I could gain from my wheelchair. To achieve this, I had to leave my virtual life behind, by coming out of the shadows I opened my arms and embraced everything, rediscovering the amazing world that I was so afraid of.

Over the past 3 years, as I have built up my confidence, I have also been learning how to be a disability advocate supporting diversity and inclusion. Developing communication skills around public speaking and networking, I have strengthened my connections and now I’m building my businesses.

Through my networks, I was introduced to a representative of Physical Disabilities Australia (PDA). Joining PDA, gave me opportunities to meet with other members, where I learnt about their stories.

With PDA, I’ve realized I’m not alone. Discovering I could still do so many things, like race, dance, shop, socialize, work and travel. I was preventing myself from having an incredible life. Now with the roll-out of the NDIS, I aim to expand this and live to the fullest.

Every person has their own unique story and although we go through different journeys, we have something in common.

If you want to read more blogs like this one or find out what PDA does, please check out this website, follow them on Facebook, Instagram, LinkedIn and Twitter.

Start to connect, as you will never know what you will find.

Written by Jonathan Shar, PDA Director

While the National Disability Insurance Scheme takes account of our care and support requirements, in my view the policy doesn’t go far enough to tackle the marginalisation and discrimination that people with disabilities face.

If cases like *Quaden Bayles has taught us nothing, Australia has a problem with our attitudes and perceptions of people with disabilities. In my life, I walk with an unusual and stare provoking gait. I have a speech impairment. Despite that I run my own business and sit on a board but the general public don’t see that side of me.

I share this not for your pity or condolences but for context. Like you I’ve faced adversity in my life. For me I can’t hide my disability, instead I celebrate my distinctive abilities. It is not the fact that I can’t run that is my disability but the taxi driver that refuses my fare because I am “unaccompanied”

There has been calls to integrate disability awareness into the school curriculum but we need to go much further because I don’t want to be trapped in a dichotomy between a welfare recipient and Paralympic champion, I want the tools to live an ordinary life without the social judgement of people who has no idea about disabilities.

For me, a ramp is a small part of what it means to be an accessible society. An accessible society would be one where I could say “This is me, disability is my identity”, it would be a society where children would be educated to ask first, stare never.

For this we need a shift in policy, we need to treat disability discrimination as something to be prevented by education not having to be referred to a complaint authority. Disability awareness in my view should be a component of study in high school PDHPE courses. Making disabilities part of normal life should be instilled from people from a young age.

On top of this we need campaigns focusing on everyday people with disabilities not just those with a public profile or cute kids who can illicit the most donations, a campaign not of inspiration porn but people that we can aspire to. We need more people like Nas Campanella being the public face which makes disability normal.

A good attitude may not erase a disability but it can make disability more included in our society.

* https://mobile.abc.net.au/news/2020-02-24/quaden-bayles-not-alone-disability-royal-commission-finds/11994872?pfmredir=sm

Written by Talia Spooner-Stewart, PDA Director

On this International Wheelchair Day, it provides us all an opportunity to celebrate the positive impact wheelchairs have on our lives.  A day not only for wheelchair users but also a day to recognise the millions who either provide accessibility to wheelchairs and for those who support and or care for wheelchair users themselves.

Did you know that only between 5-15% of people whose mobility depends on the use of wheelchairs has access to a suitable wheelchair? Not every wheelchair is the same and those with mobility limitations all have different reasons for their requirements. I never really gathered the impact of what that means until my new custom fit wheelchair was delivered.

I have been diagnosed with Multiple Sclerosis for over 20 years now, the progression of this disease has become more apparent over the last 10 years with my mobility the biggest affected. Once, I could mobilise with a walking stick and crutches and now, whenever I venture out of the house I use my wheelchair. As my mobility worsened my required specifications for my wheelchair increased.  From using an old stationary transfer wheel chair, to independently moving around in a manual wheelchair to now having a custom wheelchair to fit me with a smart drive attached for ease has been an incredible improvement to my life. It has provided so many opportunities I previously would not have had.

Previously I would have been limited or even excluded all together from activities either due to restricted or no accessibility at all.  Being able to use my wheelchair and the opportunity to use other specialised wheelchairs has provided me many opportunities that previously were not available. It has influenced my independence, choice, a sense of community and an increase in my self-confidence. These opportunities and choices have allowed me to undertake and enjoy tasks that previously I would have NEVER have done or seen. Provided an opportunity to do some amazing and life changing things.

These are photos of some amazing things that I have been able to do due to the access to suitable and specialised wheelchairs. From swimming in the ocean on a beach wheelchair, to getting up close and personal in Uluru with an off road wheelchair to volunteering at the Invictus games. None of these things unique experiences would be possible without a wheelchair, the people who support  me in a wheelchair or the accessibility implemented for wheelchairs.

Happy International Wheelchair Day.

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