Author: Jamie Bannister

The entire Inclusion Australia family was sad to learn this week about the loss of our former leader, Mark Pattison. Mark passed away in November after a long battle with cancer.

Mark was the Executive Director of the National Council on Intellectual Disability (NCID) for over 20 years. He led NCID through a revolutionary period, from a board that included service providers to a place that focussed on being a true voice for people with an intellectual disability and their families. Mark’s work set the scene for NCID to become Inclusion Australia in 2012.

Inclusion Australia CEO Catherine McAlpine said, “For many years, Mark Pattison was Inclusion Australia to a great many people across government and the disability community. Working closely with the late Paul Cain and our state members, Mark was instrumental in raising the bar on inclusion for people with an intellectual disability and challenging the systems that hold people back. Mark’s legacy can be seen in the changing attitudes to employment of people with an intellectual disability across Australia and the continued partnership and collaboration between us and our members.”

Kevin Stone, former CEO of VALID in Victoria who recently stepped down as Chair of Inclusion Australia said, “Under Mark’s leadership, the issues that we took up in the mid-nineties were the issues that were the most important to our community. Employment, unmet need for services, the closure of institutions, support for ageing parents.”

“We arranged rallies around the country along with major media campaigns to target government policies. Mark pulled it all together. He led the way and turned NCID from a passive organisation into a fist that hit hard on the big issues and was prepared to take on providers and government that were dropping the ball. He understood the power of systemic advocacy in influencing community attitudes and government policy, and he helped turn IA into a truly effective advocacy organisation.”

Together with his wife Helen, Mark lived out his values at home and at work. He had a deep personal connection to the lives of people with an intellectual disability, as shown through his own commitment to adopting children with disability into his own family.

One of Mark’s most important legacies was establishing the Our Voice Committee as a vital addition to NCID’s governance and decision making. Our Voice continues to this day as a way for people with an intellectual disability to shape and influence Inclusion Australia’s work.

Judy Huett from Speak Out in Tasmania worked with Mark as the Chair of Our Voice. Judy told us, “Mark was really supportive of people with an intellectual disability and the Our Voice Committee. He would support everyone on Our Voice in the big board meetings. He would not just let us have our say, he would make sure we had a say!”

Heather Forsyth from VALID in Victoria was also the Our Voice Chair. “I worked with Mark for over 15 years as part of Our Voice. He was a very good support to all the members.” Heather remembers, “He always encouraged people with disability to speak up and have a say about what they want. You could talk to him, but he was also a great listener to self-advocates. Mark was a great role model for all of us. Along with Paul Cain, he is a big loss to the disability field.”

Julie Butler from Speak Out described Mark as being someone who demanded a place for people with an intellectual disability at the table long before other people were thinking about it. “He had a quiet but extraordinary way of supporting people with an intellectual disability but also gently challenging people at the same time to help them grow and be even better.”  She remembers a standing committee at Parliament House in Canberra. “Mark created an opportunity for Our Voice to go. They all did a presentation. Everyone was out of their comfort zone but at the end the whole room gave a standing ovation. Mark didn’t take any of the spotlight and let Our Voice shine. This was back in a time when there was there was very little representation at that level. Mark was a person who made that kind of thing happen.”

Current Inclusion Australia Board member, Jodi Wolthers, CEO of Parent 2 Parent who worked with Mark for many years said, “Mark was never shy of the important conversations. This included knowing when to stick your head out because it was the right thing to do. There was always a risk in speaking truth to power, or a government department that might take your funding away. I have no doubt he angered a lot of people, but he also earned a huge amount of respect from across the disability community.”

“Mark was a great friend to P2P, helping us make decisions about our future. He was a great sounding board, frequently saying, ‘Jodi, you already know the answer: put the needs of people with an intellectual disability first above all else.’ Mark challenged us to establish a self-advocacy group in Queensland. Without that challenge, Loud and Clear wouldn’t exist and be celebrating 8 years. On a personal note, I remember we worked with a young man with an intellectual disability who wanted to be a poet. Mark pulled strings so his poems went in a published magazine to tick that box and achieve that goal. These little but important things wouldn’t have happened if it wasn’t for Mark.”

On behalf of everyone at Inclusion Australia and our members around the country we send our love and thoughts to Helen, Rachael and Breanna and Mark’s friends.

We want to say a big thank you to Mark for everything you did for us and most importantly for people with an intellectual disability and their families.

With the release of the final report following the independent review of the National Disability Insurance Scheme, people with disability, families, supporters, and disability representative organisations, disabled peoples’ organisations and disability advocacy organisations have united in calling on all levels of government to take action to deliver equitable, fair, just and sufficient support for all people with disability.

The NDIS delivers lifesaving and life changing supports for over 600,000 people with disability across Australia. Many people with disability need and use this support to go to work, to school, and to live in the community.

These supports have changed the lives of people with disability and their families, putting equipment and services in reach for the first time. They are essential public services.

However, not all people with disability are receiving the supports they need, and those that are find getting that support is complicated, stressful and often not enough.

The NDIS needs to work better for people with disability and their families. For people with disability who don’t get NDIS support, support needs to be available in their local community and through fair access to other public services.

Over the past 12 months, thousands of people with disability, their families and supporters, and our organisations have been part of the Review.

We have shared our stories and ideas about how to make sure the NDIS is fit for the future. We have also shared our stories and solutions with the Disability Royal Commission which released its recommendations recently.

We welcome the public release of the final report of the NDIS Review. The work must now begin, with people with disability at the table, on a roadmap forward which will ensure people get the support we need, both in the NDIS and in the community.

To make that happen, people with disability must be at the heart of the implementation. This means not just consulted, but with a seat at the table.

We are calling for the immediate establishment of a Disability Reform Implementation Council to oversee how both the NDIS Review and the Disability Royal Commission recommendations are made real.

The Council must have people with disability, our families and organisations at the table to share in decision-making. This is in line with Australia’s Disability Strategy.

We believe that all levels of government must be represented, along with key departments and agencies.

The Council would report directly to National Cabinet and have working groups specialising in key reform areas including education, employment, housing, health and aged care.

There would be a particular focus on ensuring the work of the Council is underpinned by the priority reforms of the National Agreement of Closing the Gap, already agreed to by all governments, in recognition of the continued marginalisation of First Nations people with disability.

In welcoming the NDIS Review report, we are also clear that continued access to support for people with disability is necessary and non-negotiable. Any changes to how support is provided, either inside or outside the Scheme, must not lead to any gaps in the support we receive.

We are ready to work together on this. We call on all governments to take action to make sure people with disability are fully included in this journey, and can be an equal part of the community, including with the essential supports we need.

7 December 2023

This statement has been prepared by:

• Australian Federation of Disability Organisations (AFDO)
• Children and Young People with Disability Australia (CYDA)
• Disability Advocacy Network Australia (DANA)
• First Peoples Disability Network Australia (FPDN)
• Inclusion Australia
• National Ethnic Disability Alliance (NEDA)
• People with Disability Australia (PWDA)
• Women with Disabilities Australia (WWDA)

• Download: DRO Media Statement on the NDIS Review Final Report (PDF)
• Download: DRO Media Statement on NDIS Review - Easy Read (Word)

The Australian Government shared the final report from the Disability Royal Commission on 29 September 2023.

This was a historic day for people with a disability, families and many others in the disability community.

There are 12 different volumes of the report, with 222 recommendations to make Australia more inclusive and safer for people with disabilities.

The Australian Government now has six months to respond to the recommendations in the report.

Inclusion Australia believes that everyone should be part of the important conversation about what happens next following the publication of the report. That’s why we have written this Easy Read guide to help people understand the big recommendations by the Royal Commission.

You can download a copy of our Easy Read guide to read and share with others here: DRC big recommendations – Easy Read

• Download: DRC Big Recommendations - Easy Read (PDF)

The release of the final report of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability is a huge landmark for the disability community in Australia. It’s the start of our journey to an inclusive future.

Today, however, we choose to hold space for our community’s trauma and grief, in the spirit of healing and restorative justice.

Since 2019, the Disability Royal Commission (DRC) has held 32 public hearings with evidence from 837 witnesses. It has received almost 8000 submissions, over half from people with disability themselves.

People with disability have given their courageous and often deeply painful testimony in the hope of change.

We recognise the many people who haven’t been able to give testimony, often prevented by the very systems examined, and mourn the loss of all people with disability who have lost their lives to this violence.

The DRC’s work has revealed the deep impact of intersectional discrimination and institutional neglect and abuse. This has been felt across the disability community and has particularly affected First Nations people with disability and people with an intellectual disability or complex support needs.

Grounded in ongoing legacies of colonisation, our communities have shared experiences of institutionalisation, incarceration, removal of children and of institutionalised ableism in policies, programs and services. For First Nations people with disability, this is further layered with ongoing systemic racism and colonial violence.

Reports and inquiries over decades have shown that the human rights, aspirations and needs of our communities are continually devalued and that systems have been designed to exclude or ignore them. Given this Royal Commission was the first of its kind to take into account in its Terms of Reference the Convention on the Rights of Persons with Disabilities (CRPD), it is our expectation that the CRPD will underpin the response to the DRC, with people with disability’s leadership at the centre.

As Disability Representative Organisations, we jointly acknowledge there will come a time when we will need to discuss the response to the final recommendations of the Disability Royal Commission, with the people who have been the most hurt at the heart of this response. We will do this in our own time, and our own space.

An inclusive future for people with disability will be built and led by us.

Nothing about us, without us.

Please click here for an Easy Read version of this statement.

• Download: DRO Royal Commission Joint Statement - Easy Read (PDF)

Inclusion Australia is utterly appalled by the footage from last night’s ABC Four Corners program which highlighted the horrific abuse of people with an intellectual disability and autism. This included shocking acts of control and coercion, and use of unauthorised restrictive practices.

Catherine McAlpine, CEO of Inclusion Australian said “our immediate thoughts are with the people with disability and families featured in the show. Such inhumane actions are soul-destroying and have no place in our society. We also stand with the broader disability community for whom this footage is particularly distressing. Many people will have experienced or witnessed similar acts in their own lives.”

Such images, whilst always devastating, are sadly not surprising to our community. Stories of this kind were at the heart of calls for the Royal Commission into Violence, Abuse, Neglect and Exploitation of people with disability.

Over the past 4 years the Disability Royal Commission has heard firsthand about the historic failure of our systems and institutions to support the rights of people with disabilities from across Australia. Thanks to the strength and courage of people with disability, families, and advocates, we have a clear understanding of what has happened behind closed doors where people with disability are segregated from the rest of society.

Yet the pain for our community is that the stories featured on Four Corners are not historic, but a reminder that the abuse of people with disability continues despite the evidence presented to the Royal Commission.

The rollout of the National Disability Insurance Scheme (NDIS) and establishment of the NDIS Quality and Safeguards Commission promised a new approach where people with disability have more choice and control and are empowered to speak up when things go wrong. Last night we repeatedly saw that the new systems have a long way to go before this promise becomes reality.

Ms McAlpine said “The program shows that the NDIS needs to work for and be designed with people with complex support needs at the centre. It is not enough that people with complex needs are an add-on or an after-thought. This includes people with communication support needs. The current NDIS Review must prioritise this change.”

Other key issues highlighted by the show include:

• The need for stronger consequences for providers who do the wrong thing with proportionate compliance penalties, not just a focus on ‘educating’ providers
• Responsibility should not rest with people with disabilities to make a complaint – the Commission itself has identified and should address gaps for better communication with participants in group homes
• the crucial role of independent advocates – especially for people without family connections or families who have the resources to advocate for them

Today, the broader Australian community is rightly outraged by what was shown on Four Corners. Our concern is that these stories will be quickly forgotten until the next news cycle. People with disabilities and their families cannot wait for the next scandal or expose.

With the imminent release of the Disability Royal Commission recommendations, the government has a clear opportunity to take decisive action and make the systemic changes needed.

After four years of painful but courageous testimony to the Disability Royal Commission, it is time to end the segregation and abuse of people with disability and make existing discriminatory systems more accessible and inclusive. It is time for those with responsibility for the quality and safety of disability supports to step up and ensure that services are not just compliant, but inclusive and empowering for the people they support.

All people with disability have the right to be safe and to get the supports they need, from workers who provide professional, dignified care.

• Download: ABC Four Corners - Inclusion Australia Media Statement (PDF)

The Australian Government announced an independent review of the National Disability Insurance Scheme (NDIS) in October 2022.

Over the past year the members of the NDIS Review Panel have been talking with people from across the disability community about their experiences of the NDIS and what needs to change. They have also received submissions and other feedback from consultations around Australia.

As the panel prepares its report for Government, they have started sharing what they have heard and ideas that will be included in their recommendations.

On 22 August, panel co-chair Professor Bruce Bonyhady spoke about the future of the NDIS in Newcastle NSW. He was joined by the other panel members for a Q&A session. The event was livestreamed for people around the country.

Professor Bonyhady said “we must stop thinking of the NDIS as though it is a limitless Magic Pudding … governments, service providers, and some people with disability and their families, have all started to treat the NDIS as a limitless resource.”

Members of the Inclusion Australia team who are also NDIS participants were listening online. They have shared their feedback on what they heard in Professor Bonyhady’s speech and questions that they have for the Panel.

Read their thoughts here: The Future of the NDIS – IA staff feedback

The team had some feedback on the accessibility of the speech. Together we have created an Easy Read summary of the NDIS Review Panel speech to help explain some of the big ideas. You can download the summary below.

• Download: The Future of the NDIS - Easy Read Summary (PDF)
• Download: The Future of the NDIS - IA staff feedback (PDF)

After weeks of speculation, the date of the Voice to Parliament referendum was announced this week by Prime Minister Anthony Albanese.

The referendum will happen on Saturday, 14 October 2023.

Inclusion Australia thinks everyone should be included in this important conversation. This includes having accessible information to understand what the referendum is and why it matters.

The day before the announcement, our team met with Damian Griffis, CEO of First People’s Disability Network for a helpful chat about the referendum and the Voice to Parliament.

Brooke Canham and William Ward-Boas asked Damian questions that will help you understand more about the referendum and why it matters to all Australians.

You can watch their chat in full below.

You can also read their interview here: Talking about the Voice to Parliament

This handy Easy Read fact sheet to the Voice to Parliament by the Council for Intellectual Disability will also help you understand the facts before you #HaveYourSay: The Voice to Parliament Easy Read fact sheet – Council for Intellectual Disability

• Download: Talking About The Voice to Parliament with Damian from FPDN (PDF)

The IDRG is a group of people with intellectual disability, academics, advocates, providers and parents. The group was formed in 2015 to make sure the voices of people with intellectual disability are heard more clearly by the NDIS. The IDRG makes the NDIS more inclusive for people who have an intellectual disability. Their lived experiences highlight of what needs to change and ways to make things better and more equal within the NDIS.

In August, I travelled to Adelaide because I am a part of a group called the Intellectual Disability Reference Group (IDRG). They held their August meeting in Adelaide.

When I arrived at the meeting, we had morning tea straight away. We had the chance to talk to some of the members and I introduced myself.

We received a file of the papers in colour-coded folder. This made it easier to understand what people were talking about. It made it easier to get to the page I needed, as there were page numbers listed in the easy read file.

We all introduced ourselves around the table and spoke about what we do and where we all live in Australia.

During the meeting, the main things the group talked about were:

• Employment
• Making the new Supported Decision Making policy work
• Guardianship
• The justice system

I think the IDRG is important because it gives people with intellectual disability a platform to have their voice heard and share their ideas about the NDIS and give advice to the NDIA.

There are lots of things I am looking forward to as a member of the IDRG:

• Having my voice heard and opinions heard and respected.
• Have some more face to face meetings and more travel as this helps my independence grow.
• Having more in-depth conversations with the members
• Meeting more people who are on the IDRG.
• Hearing from past people who were on this group before about their experiences on the IDRG.

The biggest thing I think I can contribute to the IDRG is my voice and therefore being heard at these meetings. I feel like I get my voice across while speaking in this group and am able to share my opinions.

I think the IDRG’s biggest strength is that it brings together different people with intellectual disability from all different backgrounds to share their lived experiences. This can help make the NDIS and other parts of Australia more inclusive of people with intellectual disability.

It’s important that the NDIA gets to hear from different people and that the IDRG members are able to speak up and also getting the chance to disagree with each other—this means the conversation is very strong!

My hope for the IDRG and the impact we can make into the future is:

• Making the NDIS more accessible and make it more inclusive and more accessible for people with an intellectual disability.
• Making more accessible information in an Easy Read for people with an intellectual disability.
• Trying to make mainstream services more inclusive.
• Making things more accessible for people with disability so they can better understand and focus on how the planning works – breaking it down into steps.

Congratulations to Ben Hankin from the Inclusion Australia Northern Territory team (IANT) who has been invited to join the NT Disability Advisory Committee.

The Committee gives advice to the Minister for Disabilities about things that are important to people with disability in the Northern Territory.

Ben attended his first meeting of the Advisory Committee last week. Ben and Liz Collier, IANT Manager, presented to the Committee about employment for people with an intellectual disability.

After the meeting Ben and Liz met with the Northern Territory Minister for Disabilities, Ngaree Ah Kit and talked about how important open employment and fair pay are for people with an intellectual disability. They also talked about how to include people with an intellectual disability in deciding how to improve employment for people with disability in the NT.

Ben and Liz talked about the work IANT has done to hear what people with an intellectual disability think about the NDIS for the NDIS Review, and the work the team would like to do in the NT in the next year. It was great to hear that Minister Ah Kit still had the Traffic Light cards for inclusive meetings that the IANT team gave her in April.

This week Ben and Liz met with Bill Shorten, Federal Minister for the National Disability Insurance Scheme (NDIS) for a working lunch and attended a meeting for the first annual report of the NT Disability Strategy Action Plan at Parliament House in Darwin.

Ben said he wants to use his position on the Disability Advisory Committee to make sure that everyone has the same accessible information and to talk with people with an intellectual disability about speaking up.

It will be great to see what Ben achieves during his three-year term.

To keep up with the latest from the IANT team, visit: https://www.inclusionaustralia.org.au/about-us/inclusion-australia-northern-territory/

For more on the NT Disability Strategy Action Plan visit: https://tfhc.nt.gov.au/social-inclusion-and-interpreting-services/office-of-disability/disability-strategy/action-plan

As Australians we all have a right to have a say about how the country is run and who by.

Politics and voting are important ways for people to have a say.

Sadly, there are also many barriers for people with cognitive disabilities to be able to fully participate in politics and voting.

Inclusion Australia is working with other organisations from around Australia and internationally for the Political Inclusion National Summit 2023.

Led by Inclusion Designlab and Melbourne University, this is a free two-day online conference for:

• People with an intellectual disability
• People with a brain injury
• Other people who need support to learn about politics and voting
• Supporters, advocates and researchers.

At the summit:

• People with disability and experts will talk about politics and inclusion.
• We will talk together about good ideas about inclusion and make a plan.

The Summit takes place on 14-15 August 2023.

To get your free tickets or to find out more visit: Political Inclusion National Summit 2023

You can also download and share the attached flyers, including in Easy Read.

• Download: Political Inclusion National Summit Flyer (PDF)
• Download: Political Inclusion National Summit Flyer Easy Read (PDF)