Blog

Healthcare needs to be truly inclusive

written by PDA’s Ambassador, Dr Dinesh Palipana OAM

“Health professions have ironically been resistant to include the very people that they treat. We are now starting to make headway in medicine. Other professions must come into line too. What better way to change healthcare for better than to include lived experiences?” Dr Dinesh Palipana OAM

As a doctor with a spinal cord injury, I’ve had the opportunity to gain a unique insight into healthcare delivery for people with disabilities. Physical access is often an issue, even in big hospitals.1 Flexibility is necessary, considering the unpredictable impact on time because of a different lifestyle. However, my most striking experiences have been in the diagnosis of sometimes life-threatening conditions.

With a spinal cord injury for example, patients mightn’t give a classical story for common conditions because of differences in sensation.2 For the same reason, physical examinations may not turn up anything useful for the doctor.3

I once woke up with chest pain, breathlessness, sweating and palpitations. It didn’t get better. Over time, this was reviewed by a few different doctors but was eventually put down to anxiety. I became frustrated and listened with my own stethoscope. I could hear some sounds in the lungs suggestive of a few different problems, but no one heard me out. Eventually, I started losing consciousness every day. Then, someone took notice. We eventually found a significant amount of fluid around one lung. The issue took weeks to identify. I ended up in an intensive care unit.

Another time, I was a patient in an overseas emergency department that wasn’t aware of autonomic dysreflexia – a potentially fatal complication of a spinal cord injury. I knew what was happening then, but no one listened. I thought that the end was near that day. Fortunately, we knew a doctor who turned up and handled the situation in the eleventh hour. In contrast, I’ve been under the care of an open-minded local emergency department who listened and identified the problem quickly.

This state of affairs is no one’s fault. In medical school, doctors are required to learn about a thousand and one different things. While specialty training as a doctor, the focus becomes even more narrow. There is just no time to cover the long-term intricacies of conditions like a spinal cord injury.

General practitioners are the frontline in Australian health care. They are the first that can see the hint of a problem. A proactive approach prevents problems at the gates, but this requires an understanding of what to look for in this unique population. Even in the early 1900s, people with spinal cord injuries for example lived very short lives because of complications. It was often a death sentence. In some parts of the world, this is still the case. But, we have the resources to ensure that our population can live a healthy and productive life comparable to those without similar injuries. Today, medicine can do that.

I must note too that we often see people in the hospital with questionable treatment given to them by their daily caregivers. Caregivers are an invaluable part of society but as with everything, some reckless ones still pervade what is perhaps one of the most precious relationships. More than once, I have seen needless injuries and negligent care. I even had a personal interaction with a caregiver who laughed about dropping their helpless client.

I’m fortunate to be in a position to have some understanding of the life experience in someone with a disability who presents for healthcare. I remember one night when a patient said, “I’m so glad that you came into this room as my doctor, because I knew that you’d understand”. I’ve also been lucky enough to have the background to adequately direct my own health care. I wonder though, what about the thousands that are voiceless?

It’s never productive to just talk about problems. What are the solutions? I can think of two immediate things.

One, is education. I’ve been involved with developing education initiatives on spinal cord injury for general practitioners. The goal is to have some upskilled general practitioners in this area that people can access for care. It’s that simple. Upskilling general practitioners to have a special interest in various disabilities is important. Thoughtful care in the community can reduce hospitalisation and resource use; and save lives.4 However, it will be up to us – the community – to drive these initiatives. No one else has a vested interest to do so.

Two, is having more people with disabilities in the health professions. I faced more than one challenge in becoming a doctor with a spinal cord injury. I once talked to a student in a wheelchair who wanted to study speech pathology, but was told that they couldn’t. These stories are not isolated. The health professions have ironically been resistant to include the very people that they treat. We are now starting to make headway in medicine. Other professions must come into line too. What better way to change healthcare for better than to include lived experiences?

Australia is leading the way in social changes for an inclusive society. We have an opportunity to create an inclusive healthcare system as well.5 We’ve seen the horrors of areas like aged care exposed in Royal Commissions. We don’t need to wait for the same in disability and healthcare. With a grassroots effort from us all, we can make it happen.

References:

1. Guilcher S, Munce S, Couris C, Fung K, Craven B, Verrier M et al. Health care utilization in non-traumatic and traumatic spinal cord injury: a population-based study. Spinal Cord. 2009;48(1):45-50.

2. Strauther G, Longo W, Virgo K, Johnson F. Appendicitis in patients with previous spinal cord injury. The American Journal of Surgery. 1999;178(5):403-405.

3. Ingram R, Suman R, Freeman P. Lower limb fractures in the chronic spinal cord injured patient. Spinal Cord. 1989;27(2):133-139.

4. Guilcher S, Craven B, Calzavara A, McColl M, Jaglal S. Is the emergency department an appropriate substitute for primary care for persons with traumatic spinal cord injury?. Spinal Cord. 2012;51(3):202-208.

5. Donnelly C, McColl M, Charlifue S, Glass C, O’Brien P, Savic G et al. Utilization, access and satisfaction with primary care among people with spinal cord injuries: a comparison of three countries. Spinal Cord. 2006;45(1):25-36.

PDA ANNOUNCES ITS INAUGURAL AMBASSADOR

It is with absolute pleasure that we announce Dr Dinesh Palipana OAM as PDA’s inaugural Ambassador.

An Australian doctor, legal professional and disability advocate who was the first quadriplegic medical intern in Queensland, the second Australian with quadriplegia to graduate as a doctor and the first with a spinal cord injury, Palipana is a welcome addition to our organisation.

Awarded Australia Day honours last year (2019) earning a medal (OAM) for his service to medicine, Dinesh is known for his determination and services to medicine, research, advocacy and perseverance in the face of adversity. Through his own personal challenges and challenging the negative public perception associated with physical disability (particularly in the medical fraternity), Dinesh is the perfect role model for PDA’s growing membership.

Always keen to take on a new challenge, Dr Palipana is excited to be championing PDA’s values, activities and mission of empowerment. “I am honoured and so excited to be supporting this wonderful organisation. I love the work that PDA does. Hopefully I can help inspire others to take on big challenges and reach their full potential, regardless of their disability.”

PDA is incredibly excited to have Dr Palipana on board, promoting the physical disability needs agenda and representing the PDA community. Liz Reid, PDA’s President, said “We are absolutely thrilled to have such an incredible advocate for thinking beyond physical disability. Dinesh embodies everything we stand for at PDA and we look forward to working with him to show that, with determination and support, those living with physical disability can achieve amazing things.”

Welcome to PDA’s family Dinesh. We are honoured and excited to have you on board and look forward to an exciting future in raising awareness and support for Australians living with physical disability.

PDA President Liz Reid’s speech at International Day of People with Disability Event at Parliament House in Darwin

Thank you Minister Fyles, Minister for Disabilities and good evening everyone,

I would like to acknowledge that this function is being held on the land of the Larrakia People, and pay my respect to elders’ past, present and emerging.

I would like to acknowledge people with a disability and their families on International Day of People with a Disability.

The United Nations sanctioned the 3rd of December as a global day of observance 27 years ago – I like some of you in the room may even remember the first celebration and been part of the reforms and milestones ever since.

The day seeks to increase awareness and inclusion of people with disability in every aspect of political, social, economic and cultural life.
This year’s theme, The future is accessible, this resonates for me personally and professionally.

My name is Liz Reid and I’m the Executive Officer for YouthWorX NT. For those who don’t know me I was born with a rare physical disability and remade from the waist down.

My education journey started at a special school; my parents back then were social inclusion pioneers, I was mainstreamed into the school in my local suburb, with the kids in my street.

I was immersed into everything the average kid would do and disability was never part of the equation. It hasn’t always been easy and requires careful planning and lots of creativity.

It wasn’t until last year that I fully embraced my disability and I became a self-managed NDIS participant – this has been huge for my family and I as I hadn’t been disabled enough for any supports before, a cost that we as a family just did because it was necessary.

The investment in Australians with a disability by governments through the NDIS, is the biggest social reform that can’t be underestimated regarding personal value and social worth. Yes, there have been pain points but it’s getting so much better and more to do. Fun fact – the NDIS conversation has been going on since 1975.

I’m fortunate to be able to blend my work with my passion for the disability community. Privilege to represent Territorians with a disability on local networks like the Darwin City Access and Inclusion Advisory Committee, national Disability Representative Organisations and the NDIA Independent Advisory Council, so our voices are heard, and they matter.

Professionally I’ve spent most of my career in education, training and employment with the view that everyone has got the ability to succeed and follow their aspiration and dreams.

For some how they get there might be a little different. I’m a big believer that we need to raise the awareness of people of all abilities and celebrate achievements with the wider community to think and act inclusively, in all aspects of life.

This year YouthWorX NT celebrated 21 years of proudly supporting Territorians to be the best they can be through a range of diverse programs. We have been actively involved with the NDIS since 2011 watching it develop, grow and to find the sweet spot for our organisation to meaningfully contribute to the lives of young people with a disability.

YouthWorX NT was recently awarded a grant from the NDIA’s Information, Linkages and Capacity Building fund to deliver Career Launchpad service. This service provides specialised career coaching and vocational support for young people with disabilities in mainstream school to the world work. The aim is for young people is to enhance in their personal, social and practical employability skills with the ultimate goal of sustainable employment.

Its beautiful the effect this program has on the young people, one young man, who was disengaging and at risk of leaving year 11, now after being part of Career Launchpad and having ongoing coaching sessions, has reengaged and now with the goal of focusing on school, finishing year 12 and a career in the aviation industry.
Career Launchpad has provided an opportunity for young people with a disability to participate in workshops such as Launchpad, vision boards and resume writing alongside young people from our other programs, all while building confidence. Young people don’t see difference, disability is not part of the equation.

I wish to recognise our program partners, Department of Education’s Transition from School Team. APM, NDIA and the skills and talent of the YouthWorX NT team, that believes – Connecting Territorians with opportunities to realise their dreams, goals and potential is paramount to live an ordinary life.

I would like to make a special mention and thanks to the YouthWorX NT Leadership Academy for attending. These young people have made commitment to be the youth voice of our service to represent all young Territorians on matters of diversity, and inclusion.

Thanks to all who everyday promote the participation of persons with disabilities and their leadership in our community.

 

Meet Natasha Nobay: PDA’s New Promotion Officer

My name’s Natasha Nobay and I’m proud to have joined the team here at Physical Disability Australia (PDA) as the new Promotion Officer.

I look forward to building on the great work that PDA has done over the past 21 years, to ensure that every Australian living with physical disability is able to reach their full potential.

Did you know that, depending upon the supplier, an individual could end up with just $15 out of $45 allocated to them through the NDIS? Tackling this is a central role of our organisation and self-management plans are something that we encourage you to explore. If you are interested in hearing more, please get in touch with us.

We’re also looking to host a series of webinars that focus on areas that you feel are worth covering: areas such as NDIS self-management, disability-friendly holidays and any other issues suggested by you that you’d like us to feature. All members are invited to register for these special online seminars. If you’re not already a Member you’re welcome too, but we encourage you to sign up, as membership is completely free.

For those unable to take part on the day, we’ll also put these webinars up on our website, for later viewing.

Going forward, I’ll ensure the PDA website is regularly updated, to keep all
interested parties informed of relevant developments. I will also be posting news, articles and information on our Facebook and Twittter accounts.

As well as our online channels, we’re working to build a sense of real-world community, by creating opportunities for social get-togethers. We plan to organise regional events to bring our members together, creating friendships and a community that can enrich our members’ daily lives. We look forward to telling you about these events in the near future. Make sure that you sign up for Membership, so we can keep you updated. Membership of PDA is totally free, and gives you the opportunity to get involved and be a part of a voice that works to improve lives for those with physical disabilities. Whether you’re personally affected by disability, care for someone who is, or you just want to be part of our PDA community, please join us by clicking this link and completing the form.

Finally, the more Members we have, the more positive impact we can make. We currently have just over 1,000 Members across Australia and I look forward to growing this number significantly, as awareness of the work we do grows. In 2015, there were over 2 million Australians living with disability, so there’s a huge potential for us to play a bigger role in supporting them.

We look forward to supporting our valued members and welcoming many more to our community.

Together with your help, PDA will work to make a difference for all Australians living with physical disability.

Would you like to work for PDA?

PDA is looking to hire someone with great connections to the disability community and experience in managing social media pages and publishing online content.

If you have a lived experience of disability and think you’re up to the challenge of publicising PDA’s self-management project, generating broad interest in self-management as a strategy for NDIS participants to manage their supports, and building PDA membership amongst Australians with physical disabilities using PDA’s social media channels, website and other online platforms available to you then we want to hear from you!

The job is part-time for 14 – 20 hours per fortnight in a work from home, use your own technology situation, and it pays between $34.05 and $36.64 per hour (SCHADS Modern Award level 4) fixed term to 30 June 2020.

For more information about the role and how to apply for it, please download the position description or call Simon Burchill, PDA Manager on 1800 732 674.

Applications close 5pm AEST Friday 30 August

Would you like to contribute to the Federal Government’s 2020 Review of the National Disability Strategy (NDS)?

Before you answer that question, you may have another of your own: “What is the National Disability Strategy?”

With all the excitement and news about the National Disability Insurance Scheme (NDIS), it has largely been forgotten that this is just a part of the Government’s response to the needs of Australians with disability. This is the National Disability Strategy (NDS).

To make sure the NDS is still relevant to Australians with disability, the Government has opened a consultation process in which they hope to learn:

  • – What’s important to Australians with disability, their families and carers now and for the next 10 years and what will make a difference in their lives;
  • – Whether there have been changes in community attitudes and the way they are treated and feel part of the community;
  • – What barriers they are facing;
  • – What the opportunities are to break down barriers;
  • – How the new NDS could better reflect the diverse experiences of Australians with disability, including the particular barriers experienced by different population groups;
  • – How carers could be recognised in a new strategy;
  • – How we can make sure the next strategy improves outcomes for Australians with disability, including what communities, organisations, workplaces and governments can do to create a more inclusive Australian society;
  • – How best to measure and report whether results are improving and how things are changing for the better; and
  • – What can governments, business and communities do to make this happen.

To gather this information, the Department of Social Services (DSS) has created a fairly comprehensive survey that asks Australians with disabilities (and their supporters) questions about their experiences and their priorities, and as with previous consultation surveys, PDA has made a copy of them so you can think about the answers you want to provide ahead of taking the survey.

Importantly, from PDA’s perspective, question 13 of the survey asks people responding to it to indicate how important they think possible government actions are for the new strategy on a 5 point scale from ‘Not a Priority’ to ‘Essential’. The possible government actions are:

  • – Strengthen disability and carer-specific laws to guide action and improvements for people with disability
  • – Fund and support local community and grassroots initiatives and trials to promote innovation and sharing ideas.
  • – Develop measurable goals and concrete targets and report against them, for example on employment
  • Fund disability advocacy organisations
  • – Greater support for families and carers
  • – Fund local support organisations
  • – Develop initiatives/activities that build on and complement the NDIS

While all these possible actions are important, we recommend that everybody be sure to check the ‘Essential’ box for action – ‘Fund disability advocacy organisations’.

In recent years, the government has reduced its funding of disability advocacy organisations to the point where PDA and many other organisations that do advocacy work for Australians with disability receive less than $30,000 per year to cover our core expenses and do whatever advocacy work we can.

Now you may think that with the advent of the NDIS there is little need for advocacy in the disability sector. Afterall, the Scheme is supposed to provide all the ‘reasonable and necessary’ supports Australians with disabilities might require. However, this is not the case. The NDIS only provides these supports to the 460,000 people under the age of 65 who have ‘severe and profound’ impairments. This leaves up to 2 million other Australians with disability reliant on State and Territory systems and the mainstream services they fund. And because these systems have accessibility gaps there is still a lot of work for advocacy groups like PDA to do.

You can read the questions and PDA’s answers to them here. This survey will take around 20-30 minutes to complete and will be open until 5pm, Monday 17 June 2019.

Royal Commission into Violence, Abuse, Neglect and Exploitation of People With Disability announced today

Physical Disability Australia (PDA) is delighted here that the Australian Federal Government has officially announced and established a Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. We are also delighted to see that 2 of the appointed commissioners: Alastair McEwin; and Rhonda Galbally; have disabilities themselves and that the Terms of Reference are broad.

Rhonda Galbally has an extensive history working in health development, disability, social and health policy in Australia. She was made a Member of the Order of Australia in 1991; awarded the Centenary Medal in 2001; and awarded honorary degrees in health and social science from La Trobe University in 1999 and RMIT in 2005. In January 2019 Ms Galbally was a Companion in the Order of Australia. Rhonda is also a current member of the NDIA Board of Directors.

Alastair McEwin, as well as being a former Australian Disability Discrimination Commissioner and guest columnist on this blog, has a background is in arts, law and business administration. He also brings to his role as a commissioner a wealth of personal and professional experience with disability. He has been the Executive Director of Community Legal Centres NSW, CEO of People with Disability Australia and Manager of the Australian Centre for Disability Law.

The Terms of Reference direct the panel of 6 commissioners to look into:

What governments, institutions and the community should do to prevent, and better protect, people with disability from experiencing violence, abuse, neglect and exploitation, having regard to the extent of violence, abuse, neglect and exploitation experienced by people with disability in all settings and contexts;

What governments, institutions and the community should do to achieve best practice to encourage reporting of, and effective investigations of and responses to, violence against, and abuse, neglect and exploitation of, people with disability, including addressing failures in, and impediments to, reporting, investigating and responding to such conduct;

What should be done to promote a more inclusive society that supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation; and

Any matter reasonably incidental to a matter referred to [the above paragraphs]


https://www.dss.gov.au/disability-and-carers-royal-commission-into-violence-abuse-neglect-and-exploitation-of-people-with-disability/royal-commission-into-violence-abuse-neglect-and-exploitation-of-people-with-disability-letters-patent-terms-of-reference?HTML

Importantly, the commissioners are directed “to have regard to … all forms of violence against, and abuse, neglect and exploitation of, people with disability, whatever the setting or context…”

We are less pleased to see no directions for the commissioners to consider what a compensation or redress scheme might look like.

The Government’s official press release notes that the inquiry is funded to the tune of $527.9 million and is expected to produce an interim report by October 2020 with the full investigation expected to take 3 years.

PDA’s answers to the Royal Commission Terms of Reference Survey

People with disability, the families friends and supporters have been calling for the Federal Government to establish a Royal Commission into the Violence, Abuse, Neglect and Exploitation of People with Disability for a long time. Thanks to the work of Senator Jordan Steele-John and a broad range of disability rights advocates this enquiry will soon be up and running.

To help define the scope of the Royal Commission’s inquiries, the Department of Social Services has posted on online survey on its Engage website (https://engage.dss.gov.au/royal-commission-into-violence-abuse-neglect-and-exploitation-of-people-with-disability/). This survey asks questions about which themes and settings the Royal Commission should prioritise during its investigations and what its recommendations to government should address. The survey also asks if the Royal Commission should also look into mistreatment that may be related to people with disability’s age, gender, sexuality, ethnicity and indigeneity and also if there were particular focus areas and settings that should be explicitly avoided by the Royal Commission.

Although we are sometimes weary of government surveys, This one seems to be a genuine attempt to get the views of stakeholders. PDA recommends that all people with disability, their family members, friends and supporters submit responses to the survey by its closing date: midnight 28 March 2019.

Would you like to see the questions and think about you answers before you start the survey?

Here they are with PDA’s answers with comments about why we answered the questions this way:

Prioritise themes

1.   We [the people who will finalise the Terms of Reference] are interested in which themes you think are the most important for this Royal Commission. Please rank the following themes from 1 (most important) to 7 (least important). Place numbers 1-7 in the boxes alongside each theme or drag items to place in priority order.

  • – The safety of people with disability in care (PDA ranked this theme 2nd most important)
  • – The quality of services delivered to people with disability (4th)
  • – Preventing violence, abuse, neglect and exploitation of people with disability across the community (3rd)
  • – The way governments, institutions and providers respond to allegations and incidents of violence, abuse, neglect and exploitation (1st)
  • – Setting better standards and guidelines for providers, institutions and people who care for people with disability (5th)
  • – Promoting a more respectful and inclusive society and the rights of people with disability in our community (7th)
  • – Fixing inconsistencies across governments in regards to quality and safety (6th)

Just as the NDIS is becoming the most significant program to provide supports to people with disability, this Royal Commission has the potential to be the report that gets governments to put in place legislation that adequately protects people with disability across Australia. This is why PDA prioritises the responses of those who know mistreatment is happening, the safety of people with disability and what can be done to prevent mistreatment going forwards.

Suggested Focus Areas

2.   On the scale provided, please rate how much of a priority you think each of the following areas should be for this Royal Commission. [The scale gives the following priority options for each possible area of inquiry: Essential; High Priority; Medium Priority; Low Priority; Not a Priority].

  • – What governments, institutions and the community should do to prevent and better protect people with disability from experiencing violence, abuse, neglect and exploitation. – Essential
  • – What governments, institutions and the community should do to encourage reporting and effective responses to incidents of violence, abuse, neglect and exploitation of people with disability. – High Priority
  • – What should be done to promote a more respectful and inclusive society for people with disability – Medium Priority

If you have any additional comments about any of the areas of focus, please write them in the space provided here:

PDA believes that all Australians need to know how widespread and ubiquitous the mistreatment of people with disability in Australia is. This will result in a lot of pressure on the government to commit to implementing all the recommendations the Commissioners will ensure the Australian public holds them to this commitment.

As such PDA would like to see another focus area added to the above list: Gaining a thorough understanding of the extent of violence, abuse, neglect and exploitation of people with disability

3.   Should the Royal Commission cover all forms of violence, abuse, neglect and exploitation? [The options here are: Yes; No; I’m not sure]

Yes!

Although having an all-inclusive view of the mistreatment of people with disability has the potential to make the workload of the Commissioners very large, it is very important that the Government and the Australian people understand how widespread the mistreatment is.

Are there any forms of violence, abuse, neglect and exploitation that you think the Royal Commission should not cover? Please write them in the space below:

No!

All forms of violence, abuse, neglect and exploitation should be covered. No perpetrators’ misdeeds should escape scrutiny. No victim’s mistreatment should be dismissed or deemed unworthy of investigation.

4.   Should the Royal Commission look into violence and abuse in all settings (places where abuse might happen)? [Again, the options here are: Yes; No; I’m not sure]

Yes!

If the Royal Commission does not look into all the settings in which the mistreatment of people with disability occurs then the Government are tacitly condoning mistreatment in those settings and the behaviour of those in authority. People with disability should be safe in all settings.

5.   Thinking about the different settings where violence, abuse, neglect and exploitation may take place, please rate how much of a priority you think each of the following settings should be in this Royal Commission [Again, the scale gives the following priority options for each suggested setting in which mistreatment of people with disability may have occurred: Essential; High Priority; Medium Priority; Low Priority; Not a Priority]

  • – Prisons and corrective services – High Priority
  • – Educational settings – High Priority
  • – Workplaces – Essential
  • – Disability services – Essential
  • – Health and hospital settings – High Priority
  • – Shared living (group homes, rooming houses, hostels) – Essential
  • – Private homes – Medium Priority
  • – Transport – Medium Priority
  • – Religious and cultural settings – Medium Priority
  • – Sporting and recreational settings – Medium Priority
  • – Other (please specify)

Are there any settings (places where abuse might happen) that you think the Royal Commission should not cover? Please write them in the space below:

No!

All settings in which violence, abuse, neglect and exploitation of people with disability should be covered. No setting administrator’s negligence should escape scrutiny. No victim’s mistreatment should be dismissed or deemed unworthy of investigation.

6.   Should the Royal Commission look at all aspects of quality and safety of services to people with disability? For example, this would include supports and services provided by government and institutions, as well as informal supports provided by institutions, carers or others in the community. [Again, the options here are: Yes; No; I’m not sure]

Yes!

As has been stated above, PDA believes that all Australians need to know how widespread and ubiquitous the mistreatment of people with disability in Australia is. This will result in a lot of pressure on the government to commit to implementing all the recommendations the Commissioners will ensure the Australian public holds them to this commitment.

Is there anything about the quality and safety of services provided to people with disability that you think the Royal Commission should not cover? Please write them in the space below:

No!

All service providers who allowed violence, abuse, neglect and exploitation of people with disability should be covered. No service provider’s negligence should escape scrutiny. No victim’s mistreatment should be dismissed or deemed unworthy of investigation.

We are interested to know if there are additional considerations the Royal Commission should look into or consider.

8.   Are there particular considerations the Commission should look into in regard to the specific needs, priorities and perspectives of people with disability, with respect to:

  • – age
  • – gender
  • – sexual orientation
  • – intersex status, or
  • – race acknowledging the particular situation of Aboriginal and Torres Strait Islander people and culturally and linguistically diverse people with disability.

Please write any particular things you think need to be considered in the space below.

PDA believes the inquiry should be given the broadest possible remit, however the Commissioners should be mindful that a person’s other attributes (age, gender, sexuality, ethnicity and indigeneity) can factor into the nature of their mistreatment.

In particular, we would like to the Commissioners to pay particular attention to people with a disability over 65 (because they are excluded from participation in the NDIS and will not be able to make complaints to the NDIS Quality and Safeguards Commission) and women and girls with disability (because are frequently targeted by sexual predators).

9.   Are there any particular considerations the Royal Commission should look into or consider with regard to the role families, carers, advocates, the workforce and others play in providing care and support to people with disability?

PDA would like the Royal Commission to evaluate the propensity of particular care and support paradigms to facilitate mistreatment of people with a disability. One of PDA’s concerns with the role out of the NDIS is that some archaic care and support practices such as group homes and shared supports that are known to have higher levels of abuse neglect and exploitation of people with disability are being re branded (as Specialist Disability Accommodation and Supported Independent Living respectively) and re-legitimised on the basis that they are cheaper for the NDIA and more profitable for traditional service providers.

10. Are there any other additional areas that you think should be included in the Terms of Reference for this Royal Commission?

As noted in our answer to Question 2, PDA believes that all Australians need to know how widespread and ubiquitous the mistreatment of people with disability in Australia is. This will result in a lot of pressure on the government to commit to implementing all the recommendations the Commissioners will make and ensure the Australian public holds them to this commitment.

As such PDA would like to it explicitly stated in the Terms of Reference that one of the purposes of the inquiry is to gain a thorough understanding of the extent of violence, abuse, neglect and exploitation of people with disability in Australia.

Support during the Royal Commission

It’s important we understand the types of support people might need to be able to participate in the Royal Commission.

11. Which of the following supports do you think are most needed to support people with disability, their families, carers and advocates during this Royal Commission? Please select any that apply.

  • – Support to help people make a submission in the Royal Commission
  • – Counselling or other psychological support
  • – Legal advice or support
  • – Call centre to answer questions about the Royal Commission
  • – Support to attend hearings or community forums
  • – Accessible technology or equipment
  • – Translation and interpreting, including Auslan, captioning and other communication technology or support
  • – Other support to make the Commission accessible (personal support)
  • – Other (please specify) – Whatever support a person with a disability requests

All of the above!

A refusal or reluctance to provide any of these supports potentially disenfranchises people with disability and might make it impossible for them to provide evidence or hear it being presented.

The remainder of the questions ask you about your demographic details (gender, age group, etc.) and place in the disability community.

Who are Peer Workers and what do they do?

Peer workers are people with a lived experience of issues such as mental illness, and who draw on these experiences to help and support others in similar circumstances.

The lived experience of such support workers enables them to connect in a meaningful way with their clients and provide a greater level of understanding and support.

What Is a Peer Worker?

A peer worker is someone who provides social, emotional and practical support to clients in need. This is enhanced by their personal experience, enabling them to make a strong connection with those who are going through similar experiences.

Workers may have personal experiences in recovering from an issue (consumer peer worker) or may have assisted in the care of family and friends with the same issues (carer peer worker).

The goal of an interpersonal approach is to encourage a lasting change in individuals who are struggling with personal issues, such as substance abuse or mental illness. A person with valuable lived experiences can complement the skills of mental health professionals and add to the care options available to patients.

What Does a Peer Worker Do?

Peer workers help to support, inspire and educate their clients. They assist in building confidence and resilience in those who are struggling, inspiring them with examples from their life and showing them that their personal challenges can be overcome.

Importantly, unlike other professional supportive relationships, peer workers are not solely at a distance, but perform the role of both mentor and carer.

This personal connection can help to break down a client’s barriers and is an essential component in building trust. This trusted relationship is often a challenge to achieve for more removed and impersonal support services but is an important aspect of encouraging a client’s recovery.

Who Do They Help?

Peer worker’s draw on a variety of different personal and community experiences, including:

– Mental health
– Indigenous services
– Drug and alcohol abuse
– Youth work
– LGBTI+
– Immigration
– Refugee services

They play an important part in assisting and supporting communities, while maintaining a people-first approach.

Peer support workers can be pivotal in assisting patients with mental health issues to recover and eventually re-enter the workforce. They are often the beneficiaries of such support systems themselves, having been helped and then going on to help others.

Why Are They Important?

Peer workers perform a needed role in the healthcare community. As they have dealt with hard times in their lives, they can share this experience in terms that are easily understood by those going through the same struggle. These personal stories can be a powerful source of inspiration and help establish a shared connection.

Peer workers are especially important in overcoming cultural barriers. Refugees for example, can have trouble adjusting to a new homeland. A peer support worker may be able to share their heritage to help overcome language and cultural barriers and provide effective support.

Reports show that up to 45% of Australians are expected to experience a common mental health disorder as a result of  depression, anxiety or substance abuse in their lifetime, forecasting a greater need for carers and support workers.

Where Do They Work?

Peer support workers can be found in a variety of roles and institutions, including:

– Community centres
– Hospitals
– Aged and disability support services
– Not-for-profit foundations (NFP)
– Non-government organisation (NGO)
– Mental health services
– Government healthcare services

However, they are most commonly found in public health services and the NGO sector.

Future of Peer Work

The peer workforce in Australia is currently under-supported with a need for more people to take on the role. Qualifications such as the Certificate IV Mental Health Peer Work have helped to prepare and train workers, while recognition of the importance of the role in the community continues to improve.

Further investments in peer work can help to address the growing need for mental health support within communities and assist with ensuring a strong rate of recovery.

More information on Peer Support services across Australia can be found here.

Author’s Bio:

This article was written by Daniel Defendi, who recommends Lifeplan for peer work assistance in Perth. You can catch Daniel on LinkedIn to discuss this piece.

Open Letter to the Premier of NSW about the Scourge of Locked Accessible Toilets

Monday 24 September 2018

Hon Gladys Berejiklian MP
Premier of New South Wales

RE: The Scourge of Locked Accessible Toilets

Dear Premier,

Physical Disability Australia (PDA) is a national peak membership-based representative organisation run by people with physical disability for people with physical disability. PDA was founded 21 years ago and we have over 1,000 members from all Australian States and Territories (232 in NSW). Our purpose is to:

– Encourage all levels of government to enable and provide every Australian living with a physical disability with opportunities to realise their full potential;
– Embrace and promote difference and diversity for an inclusive society; and
– Work with governments, industry and the community to promote the rights, responsibilities, issues and participation of people with physical disability.

We are writing to you now to let you know of an opportunity you have to improve access for people with physical disabilities across NSW by eliminating a discriminatory practice that causes them grief on a daily basis – the fact that many wheelchair-accessible public toilets in your State are fitted with access-hindering Master Locksmith Access Key (MLAK) locks.

According to the Australian Government’s toilet map website[1], there are over 540 publicly available accessible toilets fitted with MLAK locks in NSW. This means roughly 1 in 6 public wheelchair accessible public toilets are inaccessible to those who do not have an MLAK or who can’t use them because they lack the physical ability to do so. The same website reports there are fewer than 40 of these in the remainder of the country.

This issue was recently highlighted on the Coast Community News’ website[2] where it was reported that this issue had prompted the CEO of the Charmhaven Tennis Centre, Brett Bevan, to call for “[The Central Coast] Council [to] suspend immediately its policy of locking its disabled toilets and move to unlock all disability toilets”.

Mr Bevan argued that “the process of forcing those who are disabled to have to pay any sum of money to be able to use a public accessible disabled toilet is outrageous, immoral and unconscionable.”

PDA agrees. We also assert that this practice is unlawful because it contravenes section 49B (1) (b) of your State’s Anti-Discrimination Act 1977[3]and section 6 of the Federal Disability Discrimination Act 1992[4] in that it imposes conditions upon people with a physical disability that are not imposed on the able-bodied population: that they must purchase a key, or ask to borrow one from a council office or local business in order to use a public toilet.

It is worth noting that the legal question of whether or not this practice is, in fact, unlawful is more-or-less settled. The NSW Anti-Discrimination Board’s newsletter, Equal Times, in 1999[5] and again in 2001[6] provided summaries of successful conciliations in which ‘perpetrators’ came to understand that it was unlawful to lock wheelchair-accessible toilets and undertook to discontinue this practice.

Similarly, the Australian Human Rights Commission’s website[7] also has details of successful conciliations where ‘respondents’ accepted that it was unlawful to require people with disability to buy or borrow a key where able bodied people had unfettered access to public toilets.

The Federal Magistrates Court (as it was then called) has also found that the practice of having wheelchair-accessible toilets locked was discriminatory[8]

Unfortunately, discrimination law is complaints driven, and people with physical disabilities (principally in NSW) will continue to be disadvantaged as long as local authorities, public transport operators, and the managers of other community facilities can blithely install MLAK locks on wheelchair accessible toilets.

We invite you then to take this opportunity to work with your opposition colleagues and wipe out this systemic discrimination by bringing about the removal of MLAK locks from all public wheelchair accessible toilets they maintain so that they are as freely usable as the general-use public toilets they sit alongside.

Yours Sincerely,

Physical Disability Australia

Letters similar to this have been sent to the Leader of the Opposition and Ministers for Local Government, Planning, Disability Services, Transport and Infrastructure, and Innovation and Better Regulation (and their opposition counterparts) with the hope that you can agree on a coordinated bipartisan solution to the scourge of locked accessible toilets.

[1] https://toiletmap.gov.au/Find#

[2] https://coastcommunitynews.com.au/central-coast/news/2018/08/council-must-reassess-locking-disabled-toilets/

[3] https://www.legislation.nsw.gov.au/inforce/f38c7dc7-ba45-ee6e-d61f-9c8e3cbd52cf/1977-48.pdf:

[4] https://www.legislation.gov.au/Details/C2018C00125

[5] http://www.austlii.edu.au/cgi-bin/viewdoc/au/journals/EqTimeNSWADBNlr/1999/43.html

[6] http://www.austlii.edu.au/cgi-bin/viewdoc/au/journals/EqTimeNSWADBNlr/1999/43.html

[7] https://www.humanrights.gov.au/dda-conciliated-cases-access-premises

[8] http://www.austlii.edu.au/cgi-bin/viewdoc/au/cases/cth/FMCA/2001/18.html