Author: Natasha Nobay

PDA’s Director for South Australia, Nick Schumi, took a leap and decided to purchase his own apartment. He’s also had some home modifications done to make it accessible and this post tells the lessons he learnt along the way.

Important Note: Nicks renovations were funded by Disability SA. Going forward, people who need home modifications will be able to request them as a component of their NDIS funded supports so this post talks a little about getting Home Modifications under the national scheme.

1) DO LOTS OF RESEARCH

There are many different ways to make a place accessible and not all are created equal. Ask your friends, speak with your Occupational Therapist (OT), search online, visit accessible homes, whether in person or online. The NDIS will fund some home modifications, but you need to get your wish-list sorted before the planning conversations.

Instead of the standard accessible side opening oven, Nick opted for an oven door that will open forward and slide completely underneath, so he can access the oven from all sides and maximise the space of his kitchen.

Nick also decided that his kitchen counter (including hotplate and sink) should be height adjustable with the push of a button rather than just being set at a low height. This makes the kitchen flexible enough for anyone to use with ease.

2) BE PREPARED- BUILD A CASE FOR HOME MODIFICATIONS IN YOUR PLAN

While Nick got his funding for his renovations from Disability SA, moving forward people with disability who are NDIS participants and who have a genuine need for accessibility renovations will be able to have funding for these included in their plans… provided they can make a good case that the works are ‘reasonable and necessary’ and provide ‘value for money’.

Having an accessible home lets you do more things for yourself. This means you can make do with less paid support and lead a more ‘ordinary life’, and If one of your NDIS goals is to live more independently, this argument should get funding for assessments and renovations  included in your plan.

3) GOOD WORKING RELATIONSHIPS ARE IMPORTANT

It’s important to work closely with your OT to create renovation plans that suit you. This may involve a lot of going back and forth as ideas about which accessibility features best meet your needs are evaluated and chosen.

Just because your OT comes up with a suggestion, doesn’t mean you have to go with it. You should feel comfortable enough with your OT to have an honest conversation about your wants and needs. This is your place, so make sure that you are happy with the plans.

4) PRIORITISE, BUDGET AND PLAN AHEAD

It may be the case that the budget provided by the NDIS for your home modifications does not cover everything you want at the start. For example, Nick wanted an automatic front door so he can get in and out with ease, but he is not sure this will be approved by his NDIS planner as that person may decide this isn’t ‘reasonable and necessary’ yet because Nick can still open the door by hand. This decision could be reversed as his NDIS plan is reviewed, so Nick has planned ahead. He installed a power point near the door so that if automation is not approved initially, it will be easy to install when it is.

As a 14-year-old boy growing up in Adelaide, I have a vivid and searing recollection of a particular lesson in history class one day.  We were studying ancient Greek history and I learnt that babies with obvious physical deformities were reported to have been routinely thrown off cliffs or left to die, deserted by their parents and families in the open or in forests away from the tribes. I well remember feeling a sense of shock and thinking that this was grossly unfair and unjust and that everyone, irrespective of how they may appear, has the right to a meaningful life in the community.  I have often looked back on this history lesson as one of my most formative moments that set me on the path to wanting to make a positive difference for people with disability.

As Australia’s Disability Discrimination Commissioner, it is my role and responsibility to promote and protect the human rights of all people with disability in Australia.  I came to the role with a strong background in advocacy.  A few years after that pivotal history lesson, I commenced combined studies in Arts and Law at the University of Adelaide.  I chose law studies as I recognised that having an understanding of the law would likely help me in my advocacy for disability rights.  I have a distinct memory of not being particularly interested in pursuing the traditional career path of a lawyer – becoming a solicitor in a law firm; I just couldn’t picture myself doing that.   Instead, I had visions of broad-scale systemic advocacy and policy work; I even had heady notions of working at the United Nations one day.  Becoming a Disability Discrimination Commissioner however was not even on my radar during those days as a young university student.

Following two years of post-graduate legal studies at the University of British Columbia (UBC) in Vancouver, Canada, the first year of which was on a Rotary Ambassadorial scholarship, I returned to Adelaide to work as an associate for a Federal Court judge.  A great year of learning opportunities, including observing the many different styles of advocacy on display in the court by barristers.  I then moved to Sydney to take up a graduate position with Accenture, a global management consulting firm.  From there, I moved into the not-for-profit sector, working at the Australian Centre for Disability Law, People with Disability Australia (PWDA) and, immediately prior to my current role, Community Legal Centres NSW.  In parallel with my professional career, I have also been on the boards of a range of disability organisations, such as Deaf Australia, the Deaf Society of NSW and the Australian Communication Exchange.  All my professional roles have given me vast experience in advocacy and policy work, as well as skills in management and leadership.

The role of Disability Discrimination Commissioner is one that I take as a great privilege and honour to serve the community in this way.  Fundamentally, the work I do is driven by the views and experiences of people with disability themselves.  When I commenced in July 2016, I saw it as important to consult with the disability community to ensure the work I do is reflective of their views on the important issues of discrimination that we face in Australian society.  To that end, I have six priority areas that shape and guide the work I do; these areas are: employment, education, housing, criminal justice system, NDIS and violence against people with disability.  There are many other areas that are also important and I keep a watching brief on these.  I am based at the Australian Human Rights Commission in Sydney and travel regularly around the country meeting with disability, community and government stakeholders.  Ultimately, at the end of my term, it is my aim to see an Australia that is far more accessible and inclusive than when I commenced in July 2016.

Alastair McEwin
Australian Disability Discrimination Commissioner

Hi, I am 49 years old and I have been working since I was 15. I am married and have 2 grown twins.

My first job was a Junior Musician in the Royal Australian Navy. I served from 1984 to 1993. After this service, I came back to WA and before going back to University at 30 years old I had 13 different jobs.

I graduated from the Western Australian Academy of Performing Arts with a Bachelor’s Degree in Jazz in 2005.

I have run a successful music school with my wife of 30 years and also a disability support agency.

In 2010, I was diagnosed with Osteomyelitis in my left foot. Over the next 5 years I fought with daily pain and many trips to hospital for operations and antibiotics. In July of 2014 I decided that the best way forward for me was to explore the opportunity for a below knee amputation and in February 2015 I had the operation done.

My leadership journey is quite different. I feel that even though I have been working for so many years I hadn’t really explored my leadership potential.

In April 2015, I applied for the LeadAbility Course run by Leadership Western Australia. This entry level leadership course was designed for people with disabilities and those that work in the disability sector. This course opened my eyes to what I could become and assisted me to clarify what I want to do.

At the conclusion of the course I went to the CEO, Robin McClellan, and basically said to her, “Put your money where your mouth is and employ me in the organisation.” From there a position of LeadAbility Experience Coordinator was created and I was employed to do that work. Considering my background, I had almost no experience in HR Administration, so I was on a massive learning journey.

I finished my contract with Leadership Western Australia in November 2017.

But in March 2017, I gained a place on the Rising Leadership Program. This program stretched me even further as I was working with people who had been in leadership previously, some for many years and I felt very out of my depth. Anyway, I completed the course and graduated at the end of August. I am now part of the Leadership Western Australia Alumni, which gives me access to their Skillsbank and continuing and further education.

I have a new business called “Lose the Awkward” This business is about Disability Access and Inclusion and how to deal with those awkward situations and conversations that seem to follow those of us with disabilities. I am also Vice Chair of the Committee of Management of People with Disabilities WA and Board Member of Diverse Leaders Inc.

So…some lessons I have learned.

1. Go for it! If it is something you feel that you want to have a go at, DO IT! Find an organisation that you can tap in to. Research them and then approach them. Don’t be put off by the little voice in your head saying “I’m not educated enough, not smart enough, no experience, I have a disability… If you are passionate about your subject and knowledge, you will find a place that will welcome it.

2. Don’t be afraid to ask for what you want. You all know the old saying, “If you don’t ask you don’t get”

3. Surround yourself with people. Organisations and businesses are run by people. When I say people, I recommend people who will not only support you in your leadership journey and aspirations, but people who will help you to grow as a leader and as a person. I continually seek out people who will challenge me, be it in music, business or education. You will be surprised of the amount of guidance you can get if you use Point 2.

4. Get out there. You cannot develop as a leader in your bedroom. Get involved with your community, local business associations, Rotary, Toastmasters, anything that will get you out of your day to day routine and expand your social and professional networks. People have to get to know you and you have to get to know them.

5. This one is my favourite. Be yourself. You’re a unique individual. You bring to the table things, lessons, experiences, that only you have had. No-one has walked your walk and no-one will, but they can learn from you and you can learn from them. Be open, be honest and be yourself.

The leadership journey can be hard, it is challenging, and it is sometimes very demoralising, BUT, it is also rewarding both personally and professionally.

Andrew Fairbairn
Girrawheen, WA

Andrew is married with 2 grown children and is currently employed by People with Disabilities Western Australia as Field Diversity Officer. He is an avid Jazz lover and performs regularly with his wife, Kaye, as a high-tech Duo “2 or More” and is music director of a 7 piece jazz ensemble “Cafe Jazz”

As you are probably aware, on Thursday 29 March, the Australian Human Rights Commission (AHRC) formally dismissed the Queensland Government’s and Queensland Rail’s joint application for a temporary exemption from certain provisions of the Disability Discrimination Act 1992 so that they could operate their so-called New Generation Rollingstock (NGR) trains in South East Queensland.

They wanted an exemption because the NGR trains are not yet compliant with the Disability Standards for Accessible Public Transport 2002 (DSAPT), and the AHRC decision confirms the importance of disability access in all new public transport systems regardless of pressing circumstances such as the Commonwealth Games.

That’s the good news.

The bad news is that this decision does not and will not stop Queensland Rail from operating these trains unlawfully, and the Minister for Transport, Mark Bailey, has stated that they will do so. (Click here to read the Government’s official press release.)

So, what can be done to ensure the Queensland Government and Queensland Rail understand how inappropriate it is to flaunt the law?

1. Make a complaint about them to the AHRC – If you catch one of the NGR trains and you have difficulties:

• – moving between the accessible seating spaces;
• – using the toilet (if fitted); and/or
• – getting on or off the train at the relevant stations…

… then you can make an official complaint about this to the AHRC. (For more information about how to make a complaint, click here.)

If the AHRC accepts the complaint (and this is likely given that the NGR trains’ noncompliance with the DSAPT is acknowledged) then representatives of the Queensland Government and Queensland Rail must participate in a conciliation conference with you to see if a resolution can be reached.

2. Write to the Minister for Transport expressing your outrage about his Government’s contempt for Australia’s anti-discrimination laws. (Click here to download PDA’s template letter.)

While it is unlikely that the Minister himself will respond to your letter (unless you are a constituent of his in the electorate of Miller), he will know that you and other passengers with disability are angry about this matter.

3. Write to your local MP asking him or her to publicly condemn the Government’s decision to act unlawfully. (Again, you can click here to download another PDA template letter.)

Politicians of any party usually respond personally to letters from voters in their electorates and it’s important for all of them know how important disability access is to you.

4. Share your efforts on Social Media with #NGRNoGood

This message, emailed to Queensland PDA members and posted on PDA’s blog, has a limited direct audience. However, when you share it and the things you have done on Facebook, Twitter and Instagram it reaches a much larger audience of people who also think disability access is important.

Simon Burchill
PDA Manager

I am a visual artist and a mother. In 2017, I completed the first year of my law degree and became a member of the Western Australia Disability Services Board.

I was diagnosed with muscular dystrophy at the age of 19 and have lived with increasing levels of disability as the muscles of my arms and legs have deteriorated. It took years for me to learn to articulate, let alone navigate, the chaos of acquiring and experiencing disability.

I now live in the town of Denmark in Western Australia and at the top of my wish list is improved universal access to recreation – especially to outdoor and natural amenities. I believe many people underestimate the impact on mental and physical health of those who are barred by lack of access and denied equal opportunity to a lifestyle most Australians hold dear.

Greens Pool, William Bay, is an example of a place of great natural beauty, a rare safe swimming spot on the rugged Southern Coast. It has a topography which could be adapted to universal access but remains accessible via only a notoriously difficult stair climb.

There is an old maintenance track running down to the water’s edge – clearly vehicular access was at some point a priority – and yet it is unsealed and not usable by those who rely on mobility aids. I am frankly nauseated by the privilege infrastructure and technology affords to vehicles and bikes in a world where access for wheelchairs remains vastly inadequate.

The provision of universal access throughout the built environment is a basic human right. A period of disability, whether permanent or temporary, is a part of the lives of many Australians. Barriers within the built environment limit freedom of movement and choice for many people, especially people with disability, people with limited mobility and older people. Universal access accommodates the needs of all people regardless of age and ability and benefits the whole community. As such, it as a community responsibility.

When we think of the built environment, its easy to forget that nature is accessible to most via roads, paths, trails, camp sites, platforms and holiday bungalows. Boat launches along the coast demonstrate that it’s not hard to get a set of wheels to the water’s edge in a desirable location.

Where there’s a will, there’s a way.

It is the external built environment that enables us to access that lifestyle – or bars us from it. I’m not suggesting every natural amenity be graded to universal access – only that as with urban environments, there is room for improvement. After all, recreational moments, be they from a city wine bar or immersed in the ocean, are what quality of life is all about.

Anwen Handmer
Denmark, WA

Hello, my name is Jonathan Shar. I have cerebral palsy with secondary dystonia and I have just completed my first year as a participant on the National Disability Insurance Scheme (NDIS), and to be honest it hasn’t changed much in my day-to-day life.

Before the NDIS, the supports I received from the NSW government were not sufficient but at least I knew what to expect as my service provider made all the arrangements.

If anything, the NDIS has made things initially more complicated. Getting used to the myplace portal (where you access your plan, make service bookings and track how your funding is being spent) was my biggest challenge. The fact that you need to make a service booking for every time you use your funding was a big change in mindset for me. I have learnt from past mistakes of forgetting to put bookings in and built up a routine of logging in once a week to make all bookings for the following week.

Building up a good relationship with your Local Area Coordinator is key to getting a good plan. The provider in my area has been superb. If you are getting started as a NDIS participant, I would avoid Support Coordination, (where someone is employed to help you connect with services providers, mainstream services, the community and informal supports) because in my case they did nothing. My first plan was self-managed but for my second plan I changed to having Plan Management (where someone is paid to handle the business and financial work of getting your supports happening). Being self-managed requires a lot of behind the scenes administration work that may not suit everyone.

Communication with service providers also important. It is a good practice to keep a PDF of your plan and send relevant parts of it to the organisations you work with. In my case some providers were better than others. For example, one organisation I have used automatically made bookings on my behalf on their end while another just sent me invoices and waited a few months to tell me to make service bookings.

The first year of the NDIS for me was all about getting my bearings with the new system. Figuring out how different services are funded and which areas of funding to use was confusing to get your head around at times. It’s not just 1 big bundle of money you get to deal with. It’s divided into separate budgets to cover ‘Core’ (covering daily activities, social and community participation, consumables and NDIA managed transport); ‘Capacity Building’ (covering therapies and other assistance to help develop participants’ abilities); and ‘Capital’ (covering assistive technology and home modifications). Sometimes it’s a bit confusing working out which budget to use. For example, one of my main therapies, Conductive Education, is funded under Capacity Building and not Core like I first thought.

On the whole, I think the NDIS has some teething problems such as the portal and payments but fundamentally these issues will iron them self out between now and full roll out. People have to remember this is the biggest social reform since Medicare and there are bound to be problems but for me the NDIS has been a step in the right direction . In the future, my big goal is to move out of my family home into independent living so I’m going to ask for more personal support and training in life skills in my next plan.

Jonathan Shar
St Ives, NSW

If you’re anything like me, it really grates me when people don’t think about the language that they use. Especially when it is in a negative way or used to put people down.

So, when I heard about a campaign that challenges people to think about using the word “retarded”, I was especially interested since we all know how much it is part of popular culture.

It’s a word that modern society uses freely and openly. No one flinches when they speak it or write it and very few people question the use of it as everyday language.

However, the ‘R’ word is incredibly offensive and derogatory not just to those people with an intellectual and physical disability but also to their friends, families and support teams. The word makes people feel excluded, different and not accepted by the community.

Did you know that the ‘R’ Word is used on Social Media every 5 seconds?

On Twitter alone, the stats are staggering with at least:

125,000 +           Uses of the R Word per week

17,858 +             Uses per day

744                      per hour

12                        per minute.

Here at Physical Disability Australia, we were particularly interested in this campaign as we value dignity inherent in all of us and we’re especially keen in efforts to improve the lives of our members.

By changing the language that society uses to describe people, we are highlighting out we are the same rather than different. We see this campaign as promoting inclusion for people with disabilities as well as to ensure that society becomes more diverse while providing equal opportunities for all of us.

The ‘R’ Word Campaign is simple.  This campaign encourages people to consider the words they use and the impact they have on others.  All in all, it’s a simple campaign to help raise awareness and educate the public on the very real impact of what the ‘R’ Word means to many, many people.

And we’re looking to you to help us take the campaign onto the world stage and to make society think about the language that they use.

Gabrielle Trenbath
Victoria Park, WA

Physical Disability Australia has the core value of social justice, it drives everything we do as an organisation.

February 20 is World Social Justice Day, a United Nations sanctioned event that aims to promote “Social justice as an underlying principle for peaceful and prosperous coexistence within and among nations. We uphold the principles of social justice when we promote gender equality or the rights of indigenous peoples and migrants. We advance social justice when we remove barriers that people face because of gender, age, race, ethnicity, religion, culture or disability.”

Social justice is about advocating to alleviate disadvantage through campaigning for social change by striving for equality.  It is important to celebrate Social Justice because it drives us  to do better by the disadvantaged and marginalised. Advocacy is a key role for PDA.

PDA integrates social justice into all of our activities by promoting equality for all people living with a physical disability in Australia, we seek to help create a fair and equitable society that is accessible for ALL. By being a voice for our community on issues affecting our lives we champion Social Justice, take our recent Queensland Rail campaign as an example of how we practice social justice.

My name is Jonathan Shar, I am the PDA Director for NSW and I study a Bachelor of Arts majoring in Social Justice. I chose this major because it will enable me to advocate on behalf of people with disabilities and to be able to strive for equality of people regardless of their ability, this semester I will be studying 2 courses. One on Law, Human Rights and Global Governance the other on Human Rights, Policy and the Law. These courses will enhance my ability to represent your concerns on the state and national level.

Locally in NSW, an example of Social Justice is the Stand by Me campaign to protect funding for disability advocacy. Advocacy is a key part of Social Justice, giving a voice to the voiceless and the disadvantaged is key to preserve the rights of people with disabilities. Their online petition on change.org has already attracted over 30,800 signatures. You can sign the petition here.

Physical Disability Australia wishes you a Happy World Social Justice Day!

Jonathan Shar
St Ives, NSW

 

My name is Liz Reid and I am the President of Physical Disability Australia and Director (NT).

It is my pleasure to welcome you to PDA’s blog’s page and it is something that I hope will grow over the coming year to be a place where we can provide information and engage with our membership.

It is somewhere that members can contribute to and to discover the submission requirements, please click here.

2018 is going to be a big year for PDA. We hope to engage with the government, NDIA and other stakeholders to promote the unique needs of people with physical disability.

PDA will continue to campaign and lobby for our members so that they may live a good life with dignity, choice and control. It will also lobby for a fair and equitable NDIS.

PDA is also committed to promoting the National Disability Strategy and encouraging both government and business to implement it.

By appointing Associate Directors, this year will see a better engagement with members and social media will be part of that. I encourage you to become members of PDA (sign-up for free here) as well as follow us on Twitter and Facebook.

2018 will also see a focus on governance and strengthening PDA as an organisation. It is important that PDA has quality internal controls in order to be a stronger organisation and can be more accountable to the needs of its members.

Finally, I wish you all the best for the coming year ahead and look forward to work on your behalf to see better outcome for people with physical disability.

Liz Reid
Durack, NT

Welcome to the blog page of Physical Disability Australia.

Here at PDA, we’re keen to engage with our members and provide a forum for their voices to be heard. This includes allowing you to submit work for consideration and these may include a blog post, video clip or podcast.

While PDA would love to receive submissions, before you do send anything to us, please have a read of the PDA Editorial Guidelines that explains what we’re looking for and what we will accept.

If you have any questions about the process, please feel free to contact PDA’s Manager at manager@pda.org.au.

We look forward to hearing from you!

Simon Burchill
PDA Manager