Centre of Excellence in Intellectual Disability Health launches in Sydney

There was some good news for our community this month with the official launch of the National Centre of Excellence in Intellectual Disability Health on Friday 13 October.

Fiona MacKenzie, OAM, Chair, CID

Assistant Minister for Health and Aged Care, Ged Kearney formally launched the Centre at an event at the University of New South Wales which was hosted by Fiona MacKenzie OAM, Chair of the Council for Intellectual Disability (CID).

The Centre is a commitment from the National Roadmap to Health for improving the health of people with intellectual disability, which aims to address significant health inequalities faced by people with intellectual disability.

Minister Kearney formally opened the Centre, noting ‘there are 450,000 Australians who have an intellectual disability, and they deserve access to excellent, tailored and empathetic healthcare that fits their needs, the lived experience and skills of people with a disability will be central to the success of this Centre.’

The Centre of Excellence will be a catalyst to ensure people with an intellectual disability have better access to quality, timely and comprehensive health care. It will also help give health care professionals the knowledge, skills and right attitudes to work with people with an intellectual disability.

Catherine McAlpine and Jim Simpson, Senior Advocate, CID

Inclusion Australia CEO, Catherine McAlpine was proud to be at the launch in Sydney. Catherine is part of the Roadmap Implementation Governance Group who oversee and provide advice on the implementation of the initiative.

“This is a historic day for people with an intellectual disability and their families.” Catherine shared. “It’s wonderful to be here together with CID, Down Syndrome Australia, 3DN and other organisations that have worked so hard to campaign for the Roadmap and the Centre of Excellence. I especially want to acknowledge the work of Jim Simpson, Senior Advocate at CID and Dr Nick Lennox who have been working towards this moment for many years.”

Catherine added “I also want to congratulate all the members of the successful consortium that will run the Centre. We look forward to working with you to improve health outcomes for people with a intellectual disability.”

The launch also featured, Rhys Nagas, Board member of First Peoples Disability Network Australia. Rhys shared the challenges he has faced in the healthcare system that have led him to feeling “like I was nothing”.

“The Centre of Excellence will be kinder.” Rhys added.

Naomi Lake, Health Ambassador for Down Syndrome Australia shared her role educating health professionals and being part of the intellectual disability Health Roadmap Governance Group. ‘What makes me different, makes me, me. It is really important that people with an intellectual disability are involved in their own healthcare.’

Reflecting on the launch, Jim Simpson said ‘We at CID are delighted to be part of delivering on the Centre’s potential to make big differences in the lives of people with intellectual disability.’

Fiona Mackenzie closed the launch noting, ‘the Centre will give us a voice!’

Naomi Lake, Health Ambassador, Down Syndrome Australia

You can view an Easy Read Guide to the Centre here: The National Centre for Excellence in Intellectual Disability Health Launch – Council for Intellectual Disability (cid.org.au)

You can watch a video of the launch here: https://youtu.be/OmFZ1RLP-lE

Reflecting on the Disability Royal Commission closing ceremony and Recommendations

Inclusion Australia staff member, Brooke Canham shares her thoughts on the Disability Royal Commission’s closing ceremony and the final reports recommendations.

The Disability Royal Commission Closing Ceremony September 2023

The Disability Royal Commission has now finished. It held 32 public hearings, more than 800 people gave evidence and 8,000 submissions were written. 4,000 of those submissions were from people with a disability.

We know that there were lots of people with an intellectual disability that did not get to share their stories.

On Friday 15 September the Disability Royal Commission held their closing ceremony. They showed footage from the Disability Royal Commission’s hearings of people who have lived experience, family members and other supporters. The footage was very emotional.

Poet, Andy Jackson spoke at the closing ceremony. The first poem Andy Jackson read was about Mutual Obligation. It was very interesting. The second poem was called Listen. This poem made me feel strong, it was touching and very interesting.  The poem was about being able to rest, being able to breathe and to be nourished. This meant a lot to me because sometimes, I need to rest and take a break.

The final report and final recommendations from the Disability Royal Commission

The Royal Commission has now handed down its final report.

There are 222 recommendations in the final report.

The recommendations talk about what changes need to happen to meet the vision for an inclusive Australia. It tells us how governments and other decision makers need to come together and work as a team to create more inclusion.

Visions are ideas about how people want things to be in the future. Some people want a future where people with disability are safe, and their rights are respected. A future where you can make your own decisions and live a full life.

There are some things I think are most important for the government to act on:

  • Making it harder to become a service provider by having more checks and procedures that need to be met
  • All documents should be in Easy Read so people can understand and be able to process all the information they need
  • Making government systems inclusive and easier for people with an intellectual disability to understand and follow instructions

What happens next?

The Disability Royal Commission has been very important for people with an intellectual disability. They have had a chance to have their voice heard and be able to talk about their lived experience.

Now it is time for the government to act and make the recommendations from the Royal Commission happen. During the public hearings we heard so many stories of violence, abuse, neglect and exploitation that people with disability—including people with an intellectual disability—face in daily life.

If the government does not act, people will just keep experiencing this violence and nothing will change. We cannot let this happen and must make those peoples’ stories have meant something for the future.

You can find all the Disability Royal Commission Easy Read reports here: Disability Royal Commission Easy Read reports – Inclusion Australia

Understanding the Disability Royal Commission recommendations

Our Easy Read guide to some of the big recommendations by the Royal Commission

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

Australia’s Disability Representative Organisations call for healing

Joint Statement ahead of the release of the Final Report of the Disability Royal Commission

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.

Understanding the Uluru Statement from the Heart

Inclusion Australia staff member, Brooke Canham tells us why the Uluru Statement from the Heart is important in understanding The Voice Referendum.

What is this article about?

This article is about the human rights of Aboriginal and Torres Strait Islander people in Australia. This community is also called First Nations People.

In this article, we talk about a document called the Uluru Statement from the Heart.

We also talk about the Voice Referendum. This referendum is very important because it is about hearing First Nations people’s voices. We need to vote to make this happen.

What is the Uluru Statement?

Many First Nations people from around Australia met in Uluru in 2017 and made a plan. They called it the Uluru Statement from the Heart.

This is a document that talks about how things should change for First Nations people to claim their human rights and to be treated fairly in the Australian culture. They wanted to get their voice heard and to be treated respectfully.

They worked together to create a plan to make sure First Nations people have a voice and can make decisions about their lives and their communities.

There is now an Easy Read summary of the Uluru Statement.

It was created by First Peoples Disability Network Australia (FPDN) with help from Inclusion Australia, the Council for Intellectual Disability (CID) and VALID. It is new. There has not been an Easy Read version before.

You can read the Easy Read summary here: Uluru Statement from the Heart Easy Read Guide

What does the Uluru Statement talk about?

The Uluru Statement talks about how hard things can be for First Nations People in Australia. This can be things like the way people look at them and how they are treated, and how many Aboriginal people go to jail because of some of the rules that are unfair for people who are Aboriginal. Lots of First Nations families also have their children taken away from them.

The Uluru Statement says that spiritual connection is important to First Nations people. It talks about their connection to their land, nature, and culture.

It talks about First Nations people’s ideas on how they would like to change things and make things better and be treated fairly.

One of the things it talks about is a Voice to Parliament. This is a way that First Nations people would be able to give their feedback to the Australian Government.

Why is it important to read the Uluru Statement?

It helps all Australians to understand what Aboriginal and Torres Strait Islander people are asking for and to respect and claim their human rights.

The Voice Referendum

There is a referendum coming up in Australia.  It will be held on 14th of October 2023.  It is compulsory for adults to vote in Australia. This means you have to vote. Voting is important because it is a way to get your voice heard. Being able to vote is a human right.

Also, we probably won’t have another referendum again for a long time, so it is important to be included and have your vote as it is our decision together.

The referendum is about whether we want to create a Voice to Parliament for First Nations people. It would mean changing the constitution, which is the rulebook for how governments in Australia work. This was something that First Nations people asked for in the Uluru Statement.

Having the laws and rules changed will allow people to speak up a bit more and be involved and help Australia to run better for the future to come.

A Voice to Parliament will help First Nations people to be heard on what they want to make a better future and a better Australia, and to understand what we need to make a happy life for people so we can work together and make a happier place.

Through the Uluru Statement, First Nations people have asked us to vote ‘yes’ in the referendum. If you vote ‘yes’ that means you agree there should be a Voice to Parliament.

Inclusion Australia believes there should be a Voice to Parliament. We will be voting YES.

For more information on The Voice to Parliament you can also watch this video of our interview with FPDN CEO Damian Griffis.

Shocking abuse highlights urgent need for government action to implement Disability Royal Commission recommendations

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.

How to make dental services more accessible and inclusive for people with disability

Brooke Canham, Policy Officer at Inclusion Australia explains what was included in the joint submission to the Parliamentary Inquiry into Access to Dental Services in Australia.

In March 2023, the Australian Senate established the Select Committee into the Provision of and Access to Dental Services in Australia.

The Committee wanted to hear from all Australians, including people with disability, about what makes it hard to get dental care and how to make dental services more accessible and inclusive.

Inclusion Australia contributed to a joint submission and made recommendations to the Committee about what needs to change.

Brooke Canham, Policy Officer at Inclusion Australia explains what was included in the submission and her thoughts on accessing dental care.

Who did we write the submission with?

This submission was written with a few organsations including: Australian Federation of Disability Organisations (AFDO), Children and Young People with Disability Australia (CYDA), Down Syndrome Australia and Inclusion Australia.

Who did they write the submission for?

The submission was for the Inquiry into the Provision of and Access to Dental Services in Australia.

What did the Inquiry want to look at?

How people use dental services and what is stopping people getting the dental care they need.

What did we tell the government?

We wanted to tell the Government about the issues and how hard it is for people with a disability to access  the dental care they need. Dental problems can lead to other types of health issues and can make you feel very unwell.

Why do people with disability have a hard time accessing dental care?

It can be a long wait to get an appointment. This can be very hard if you are in pain or need to see someone quickly. It costs too much to receive dental care. It can also be very hard to get to the dentist if you live on your own and need to be at your appointment at a set time.

What did we say about the other barriers people face to getting the dental care they need?

That there isn’t enough information about what dental care is and what dental treatment you might need. There is not much information about dental care specifically for people with disability in Australia.

A barrier is also the affordability of dental services.

Why do people with disability find going to the dentist frustrating? 

  • It costs too much.
  • There can be long waits and they don’t tell you how long your appointment will go for.
  • You spend too much time in the dental chair. This can be frustrating for some people as there may have other health issues.
  • The information isn’t broken down in a way for people to easily understand. You often have to look to your support person for help which can be frustrating as some people go to the dentist independently.

What do we want the government to do?

  • To make it easier for people with disability to afford dental services.
  • To spend more money training dentists about how to work with patients with disability.
  • To start collecting information about people with disability who get dental care.

What are some of your own experiences at the dentist?

I feel like you need to have a connection with your dentist so you can talk about what they are going to be doing. I need to be comfortable with the way they communicate with me and how they ask me questions throughout my dental procedure.

I go to a dentist in Perth which is government owned, and I get free dental checkups but there is always a waitlist. This dentist specialises in people with disability.

It is easier for me to look at things like flyers and factsheets when I go to the dentist, especially if it includes diagrams on what they are going to do. On paper is easier than showing me on a phone or laptop.

What do you think is the biggest thing that needs to change to make sure people can access dental care?

That it is affordable because people with disability will go to the dentist without having the stress of paying too much for the services.

Having Easy Read documents so it is easier for people to understand information before they have their dental treatment. This will make the person feel calmer and want to come back to have more dental care in the future.

What do you think the most important part of our submission is?

  • To make things more affordable for people with disability to access dental care.
  • Dentists need to be educated on how to understand someone with disability, including the best ways to communicate.
  • To have accessible Easy Read information about dental care.

You can read the Easy Read submission here: Dental Care Joint Submission – Easy Read

Find the full submission here: Joint submission access to dental care.pdf

Ending the use of Restrictive Practices

Brooke Canham, Policy Officer at Inclusion Australia shares her thoughts on the Disability Royal Commission’s report on Ending Restrictive Practices

The Disability Royal Commission has published some new research about restrictive practices. It was written by the University of Melbourne, the University of Technology Sydney and the University of Sydney. The report is called, Restrictive Practices: A Pathway to Elimination.

An Easy Read version of the report can be found here: Research Report – Ending restrictive practices – Easy Read version (royalcommission.gov.au)

The research report is about how we can work towards ending the use of restrictive practices.

Restrictive practices are actions that stop people from moving or doing what they want. Restrictive practices also include when someone controls another person, and when someone makes decisions about a person’s life for them. For example, how they spend their money or what healthcare they get.

We know that people with disability have negative experiences with restrictive practices, like people hurting them or making them feel scared. This can make it hard for them to speak up about their experiences. We also know that restrictive practices don’t support the rights of people with disability.

Seclusion is another example of a restrictive practice. Seclusion is when someone puts a person alone in a room or a space and stops them from leaving.

The researchers for the report wanted to make sure they included the voices of the community. They collected and reviewed data. This included facts, information and records. They also spoke with a group of experts from organisations run by people with disability. People with disability shared how restrictive practices impacted their lives and how they felt their rights had been taken away.

One thing we would like to know is whether they talked to people with intellectual disability. This is important because we know that people with intellectual disability are likely to experience restrictive practices.

Here are some examples how restrictive practice can affect people with disability:

  • People might not feel or be safe with the people who provide their care
  • People can feel scared
  • Restrictive practices take control away from people with disability
  • People might feel like they have always done something wrong
  • Restrictive practices can take away peoples human rights

The researchers made lots of recommendations about how to end restrictive practices. There were 4 main parts to their recommendations:

  1. Making restrictive practices against the law
  2. Stop using housing that keeps people with disability away from the community
  3. Governments should make sure people with disability can make their own decisions
  4. People with disability must be able to choose where their live and how they take part in the community

This research is important because people with disability don’t want to be discriminated against, they want to be treated fairly. We need to stop using restrictive practices full stop.

It is important to find better ways to support people with their behaviour and help them to claim their rights and have a voice.

We need less restrictive practices so that we can uphold the human rights of people with disability and make sure people are living inclusive lives.

New Easy Read interpretation of Uluru Statement launched as disability community unite behind Yes campaign

There has only ever been a single version of the Uluru Statement from the Heart – until today.

Led by disability representative organisations, advocates and service providers, the sector has come together with First Nations people to launch an Easy Read interpretation of the Statement in an important step towards making the statement accessible for everyone.

The Easy Read statement has been designed by First Peoples Disability Network in a consultation process with First Nations people and people with intellectual disabilities.

The new format of the Uluru Statement is an important step to increase access and understanding of the referendum for everyone.

Megan Davis, one of the architects of the original Statement says “the Uluru Statement was a carefully crafted invitation issued to all Australians to walk with us in a movement of the Australian people. It is a simple one-page call for Aussies to understand why a Voice is needed. I am overjoyed this easy read version has been created to ensure it is accessible to all Australians.”

Spokesperson for the Disability Collective for Voice and CEO of First Peoples Disability Network, Damian Griffis, said the disability community adds a unique perspective to the Voice debate.

“With four million Australians living with disability, it is incredibly important that voting is accessible – this means everything from information materials on the Voice to voting facilities.

“This is why an Easy Read interpretation of the Uluru Statement from the Heart is such a huge milestone for us – it allows the Statement to be accessible for every single Australian, allowing the level of engagement and understanding that is necessary for progress.

It comes as organisations from across the sector are joining together today in a National Day of Solidarity to support the Yes campaign for a First Nations Voice to Parliament.

First Peoples Disability Network, People with Disability Australia, Disability Advocacy Network Australia, Inclusion Australia, the Australian Disability Dialogue and members including Council for Intellectual Disability, VALiD, Life Without Barriers and Cerebral Palsy Alliance have all committed to using their networks to build awareness, understanding and reassurance on Voice and the Referendum.

“The disability community understands what it is like to have decades of barriers placed in front of you and we also know how crucial self-determination is to genuinely advance positive change.

We believe First Nations people deserve more than the status quo. The same approaches over decades have failed and we believe a Voice to Parliament will enable something much better for the future.

“As a collective, we’re determined to ensure that information on a Voice to Parliament is accessible to all groups across Australia so everyone can make an informed decision at the referendum,” Mr Griffis said.

“First Nations Peoples and, First Nations people with disabilities are overrepresented in our criminal justice system, in the child protection system and this group continues to be demonstrated in the Closing the Gap reporting for outcomes to be worsening.

“An Aboriginal and Torres Strait Islander Voice to Parliament has the potential to shed light on these pressing issues and provide culturally appropriate reforms to create better outcomes for all Australians including First Nations Peoples and people with lived experience of disability.

“By adding our support to the Voice to Parliament, creating accessible events and resources, culminating in a day of action, it is our hope that we can encourage people with disability, their families, carers and friends to consider what a Voice to Parliament may mean for them, and our Nation.

The release of the Easy Read statement builds on existing community-translated material on the Voice to Parliament to create a Plain English, Auslan and accessible video interpretations of the Uluru Statement from the Heart, and online town halls to provide information to more people in our community about the Voice to Parliament.

“The Uluru Statement from the Heart is the founding document for a Voice to Parliament and as such, it ought to be accessible to all. It is a resounding call from the more than 80% of Aboriginal and Torres Strait Islander people who are asking us to vote Yes,” Mr Griffis said.

“Everyone deserves to understand what they are voting for and the significance of their decision. That’s why we’re undertaking this critical work, to ensure that every Australian fully understands the purpose of the vote and how to participate.”

View the new Easy Read Uluru Statement of the Heart here: Uluru-Statement-from-the-Heart-Easy-Read-Guide.pdf (haveyoursay.net)

Joint media statement – Disability rights organisations call for an End to the Violence

A group of disability rights organisations from across Australia are launching an action plan to end the violence against people with disability

On September 29th the Disability Royal Commission will hand down its final report and recommendations, which the group is hopeful will provide a blueprint to end the systemic violence people with disability face every day.  The End the Violence plan outlines some of the urgent actions government can take to demonstrate their commitment to people with disability. 

Disability Advocacy Network Australia CEO, Jeff Smith said “We heard through the Royal Commission that people with disability are more likely to experience abuse and violence compared to other Australians. This violence is often perpetrated when using health and disability services, when dealing with government organisations and the justice system.”  

First Peoples Disability Network CEO, Damian Griffis said “First Nations people with disability are more likely to have their children taken from them, more likely to end up in the justice system and those living in regional and remote areas have greater barriers to accessing support services that are culturally safe.” 

Our joint plan for action includes: 

  1. Reform systems to ensure accessible, responsive and accountable protocols and procedures to investigate, respond to and act on instances of violence, harassment and abuse.
  2. Fund frontline support to make sure people with disability are aware of their rights and supported to take action and report violence, harassment and abuse when it happens to them.
  3. Establish programs to tackle the sources of violence and address the practices that allow this systematic violence to occur. 

Inclusion Australia CEO, Catherine McAlpine said “Through the Royal Commission, we told our stories, we made the case for change and now we need to see urgent action to ensure people with disability are safe when accessing the everyday services and supports we need to live free and equal lives.” 

President of People with Disability Australia, Nicole Lee said “We know that incidences of violence, harassment and abuse are significantly underreported by people with disability. This silence is often because we don’t feel safe enough to report what is happening to us, fear that we won’t be taken seriously or simply not knowing how to speak out. The response to the Royal Commission has to deal with this and make it easier for people to report and understand our rights.” 

Children and Young People with Disability CEO, Skye Kakoschke-Moore said “Today we have launched the End the Violence campaign and are calling on all members of our disability community to write to Prime Minister Anthony Albanese and Minister for Social Services Amanda Rishworth and ask them to work with us and to take urgent action to end the violence!”  

Organisations are: 

Inclusion Australia can be contacted for comment at: [email protected]