Supported decision making is about being able to make your own decisions with the right support.
Make Decisions Real is a 3-year ILC project that aims to help people with intellectual disability and their supporters through the development of tools and training that will:
increase their knowledge and skills around decision making and decision supporting,
improve their confidence to make and support decisions,
increase opportunities for decision making and self-advocacy, and
lead to greater choice, autonomy and independence.
Workshop
As part of Make Decisions Real, Inclusion Australia is running workshops for people with intellectual disability and their decision supporters to learn about supported decision making.
The workshops have been co-designed by people with intellectual disability via our Project Steering Group, and will be presented by Inclusion Australia Peer Workers Brooke and Lorraine. They will be packed full of useful information, fun practical activities, and lived experience stories of supported decision making.
There will be 5 workshops held between November 2021 and March 2022. Each workshop happens over 2 days, on a Tuesday and Wednesday.
3 workshops will be held online via Zoom and are open to anyone in Australia, and 2 face-to-face workshops will be held in Perth WA.
Face-to-face workshops will have morning tea, lunch and coffee & tea provided, and an Auslan interpreter (if required).
The online workshops will have an Auslan interpreter and live closed captions.
We had 18 entries into our Art Competition as part of Inclusion Australia’s Make Decisions Real project. The theme for the competition was ‘I make my own decisions’.
Make Decisions Real is a 3-year ILC project that aims to strengthen the capacity and skills of people with intellectual disability and their supporters around supported decision making. This will happen with a series of pilot training workshops co-designed and presented by the project’s Peer Workers with intellectual disability, and by the creation of supported decision making resources.
Three winners were chosen by the Make Decisions Real Peer Workers, Brooke and Lorraine. Each won a $500 Visa gift card as their prize. They will also have their artwork featured in resources created for the project.
The 3 winners are:
My Path, My Decisions by George Williams
My Path, My Decisions – by George Williams
George said his artwork ‘represents how I decide, and what it means to choose my own different pathway as I develop and learn from the best people in my life.’
Lorraine and Brooke said: “We like this artwork because you can really see their decisions, and it shows that you can make both big and small decisions in your daily life.”
I Like Sushi by Matthew Lam
I Like Sushi – by Matthew Lam
Matthew says he painted his artwork because: ‘I like drawing and sushi.’
Lorraine and Brooke said: “It shows an everyday decision. We like the colours. It was simple, but really good!”
Puzzle of Decisions by Sarah Porter
Puzzle of Decisions by Sarah Porter
Sarah said about her artwork:
‘It shows there are lots of decisions to make, and questions to ask. Sometimes they are like a puzzle that can go together in different ways.’
Our Peer Workers chose Sarah’s artwork because of its amazing detail.
The three winners were all very excited to have won and are looking forward to spending their $500 Visa gift cards!
There were so many great entries, and it was hard for our Peer Workers to choose only three. Some of the other artworks entered have also been chosen to feature in some of Inclusion Australia’s communications.
For more information about the Make Decisions Real project, including the upcoming pilot training workshops which will be held both online, and face-to-face in Perth WA, email Emma (Project Coordinator) [email protected] or keep an eye on Inclusion Australia’s Facebook page and the Inclusion Australia website.
“The NDIA is at risk of turning people with a disability and families, who have been the Scheme’s greatest supporter and most important ally, into a desperate and angry enemy. There are very few people working at the NDIA, or in government now, who remember the campaigns and rallies of the past, so let me remind you. We will not stand by and watch this happen. We will not be bullied or bought off. People with disabilities and their families will come together across the country and we will fight you.”
Kevin Stone AM, CEO of VALID and Chair of Inclusion Australia, has issued a blistering new statement opposing NDIS independent assessments.
This is the third statement made by VALID since September 2020 raising concerns about the proposal – and warning the NDIA about the potential for the changes to cause irreparable damage to the Scheme and the harm that will be done to people with intellectual disabilities if compulsory assessments go ahead.
The statement was made at the end of VALID’s two-day online conference, We Won’t Be Beaten, where people with intellectual disabilities and their families shared their fear and anger about the plans to overhaul the Scheme.
I’m Kevin Stone. I’m the CEO of VALID and the Chair of Inclusion Australia.
Late last year, VALID stopped working with the NDIA on anything to do with their independent assessments. We had come to the conclusion that they do not have the best interests of people with disabilities or their families at heart.
Nothing they have said or published since persuades me that we got it wrong.
They dress it up in all sorts of clever ways but the bottom line is that they are bent on dismantling the scheme that we fought for. In many ways, what we’re fighting is the tide of a dark history coming back to haunt people with disabilities and their families.
More than 10 years ago we rallied in support of the NDIS. We were fighting for a disability support system that would live up to the vision of the United Nations Convention on the Rights of Persons with Disabilities. A system that would create a quality of opportunity for all Australians with disabilities.
Unlike a lot of people working at the NDIA now, people with a disability and their families remember how it was before, during the 1990s into the new century when we had the Commonwealth State Territory Disability Agreement. It was a cruel and inefficient system with federal and state governments arguing and buck-passing as people with disabilities languished on waiting lists all over the country.
While politicians passed the buck, many people with disabilities remained hidden away in institutions and many died without ever receiving proper support. When the campaign for the NDIS succeeded, it gave us hope that we had left those dark times behind. The NDIS was meant to put Australia on the right side of history to close institutions and institutional mindsets forever.
The NDIS was designed as insurance for all Australians if and when they need it. It’s been a wonderful thing to see so many lives transformed for the better by the NDIS.
It’s had its problems which we’ve all been willing to work with them to fix.
But we have come to the conclusion that they are not really trying to fix it. They are trying to take us back to the bad old days of buck-passing, rationing, and of putting people with a disability back into their bureaucratic cost-cutting boxes.
Right now, big decisions about our NDIS are being made by powerful people who do not understand the impact of the changes they are making. Dirty deals are being done to satisfy vested interest groups. Massive money is being wasted on consultancy firms with no transparency or accountability.
Powerful privatised service empires are being built on the backs of disempowered people.
Bankers, business people, and insurance actuaries are devising new ways to clump, cluster, and classify Australians with disabilities for the convenience of government.
It is prejudice, disguised in new and ugly forms.
And we will not stand by and let it happen.
These so-called ‘independent’ assessments are not independent at all. The NDIA have chosen who will do the assessments and they are paying per assessment. The more assessments they do, the faster they do them, the more they get paid.
That’s not independence, that’s a scam.
When we stop viewing people with disability as individuals and turn them into so-called ‘personas’ – when we put people into boxes as the NDIA is trying to do – those of us with a sense of history know where it leads. In five, ten, 15 years from now, the bureaucratic boxes they are building will become the new and more insidious institutions of the future. Less visible in the asylums of the past but just as shameful.
Like many people with disabilities and families across the country right now, I have lost all confidence in where the NDIA is taking us.
They have made it clear that they trust no one. The NDIA does not trust participants and their families to speak to their own needs.
They’re assuming people with disabilities are ignorant and greedy. So, they demand assessments to prove every last thing – but then they ignore those same reports.
They say doctors and allied health professionals can’t be trusted, because of so-called ‘sympathy bias’.
They do not trust service providers, who they say are over quoting.
They do not even trust their own planners and delegates to make the decisions that they are employed for.
According to the NDIA and the Minister for the NDIS, no one can be trusted, and everyone is a liar. But it is the NDIA who has manipulated and hidden the truth.
They have misquoted academics.
They have set up sham trials for a process that they have already decided will happen.
They’ve refused to allow public scrutiny or independent evaluation of the secret black box that they call the ‘Personalised Budget Tool’. This black box contains a decision making algorithms, that will make or break people’s lives. They will not tell us what else they will use that data for.
They hold round table meetings and phony consultations with our advocacy peaks. They have no intention of genuinely listening.
They say compulsory tick-a-box assessments administered by a stranger will make the scheme fairer. They say the changes will be good for us. And when we disagree they say we’ve misunderstood them. They think we just don’t get it. We know exactly what they’re doing.
We’ve been here before.
This is the government that brought us Robodebt for Centrelink. Who have bungled the COVID vaccine rollout – deprioritised people with disabilities and put their lives at risk.
And now they want us to accept Roboplans.
We will not.
Government Ministers and NDIA executives have become obsessed with automation at the expense of everything and everyone.
NDIS independent assessments will put people with disabilities back onto the conveyor belt to congregation. Because it will be all that their funding will afford them. And don’t be deceived. This isn’t by accident. This is by design.
Recently, we’ve heard dangerous comments from the Prime Minister, the Minister for the NDIS and the NDIA itself – insinuating that some participants might be too expensive. Suggesting that people with disabilities themselves are sending the scheme broke.
It’s dog whistling. Just like former NDIS Minister Stuart Robert, howling on the sex therapy issue.
It is contemptible stuff.
They are trying to turn Australians against the very spirit of the NDIS that the whole nation showed its support for – an NDIS that gives people respect, dignity, choice, control, and human rights.
We need to understand, the compulsory assessments are just one part of their big, bad plan.
They are going to ignore your goals.
Planning will be non-existent.
They want to stop the states and territories from being part of the decision-making.
They want to control your choices by redefining reasonable and necessary.
They wanna strip away self-management, dial back support coordination, and fund more congregate housing.
The NDIA is at risk of turning people with disability and families – who have been the scheme’s greatest supporter and most important ally – into a desperate and angry enemy.
There are very few people working at the NDIA or in government now, who remember the campaigns and rallies of the past so let me remind you.
We will not stand by and watch this happen. We will not be bullied or bought off. People with disabilities and their families will come together across the country, and we will fight you.
So once again, I say to the new Minister for the NDIS Linda Reynolds – stop the independent assessments debacle before it causes further damage. All the problems they tell you will fix are only gonna be made worse. So cut your losses while you still can.
Cancel the independent assessment contracts and put those hundreds of millions of dollars back into the scheme, so it can do the job it is intended to do.
Release the data – the raw numbers on what is happening with the NDIA’s budget. And commission independent research to understand the problems.
Sit down with disability representative organisations, work with us to objectively identify the problems and test the solutions, and co-design the improvements that are needed.
Sack the NDIA CEO. Sack him.
Ditch the consultants and sack the rest of the content-free executives who know everything about banking and insurance, but nothing about the lives of people with disabilities and their families.
And while you’re at it, replace the NDIA board. They have betrayed our trust and lost our confidence.
Over the past 2 days we’ve come together across Victoria and Australia, and we’ve talked a lot about the threats posed by COVID-19 and the things we need to need to do to stay healthy and connected. And many people have also talked about the threat posed by the NDIA’s independent assessment plans.
People with disability and their families have told us – and we will tell the world – we can’t be beaten.
Take action
Want to take action right now? Our powerful community can keep the pressure on Minister Reynolds – she can put a stop to dangerous independent assessments!
Tara Elliffe is a disability advocate who wants to share her experience getting the COVID-19 vaccine and encourage others to do the same.
“My message is to be brave and have the jab. It’s okay. Just do it,” she said.
Tara has Down syndrome and wants to encourage other people with disability to get their COVID-19 vaccination.
“I had my jab and it didn’t hurt at all. I’m here to protect myself from COVID-19 and my and families and friends,” she said.
Tara plans to share her COVID-19 vaccination message with her friends, colleagues and the wider community.
“I’d like all my friends to roll-up their sleeve and have the vaccine too. If I can do it, then they can too,” she said.
Adults with Down syndrome are now eligible for a COVID-19 vaccine under the Federal Government rollout. Tara got her COVID at the Vaccination Centre at RPA, which is run by Sydney Local Health District. You can find out more about getting your vaccine and how to make an appointment on the Department of Health website.
People with intellectual disability, including those who live in group homes, are being left behind by the vaccine rollout and this needs to be fixed now.
“Yesterday’s Senate Estimates revealed that fewer than 2 per cent of people with disability living in group homes had been fully vaccinated. This is unacceptable,” said Catherine McAlpine, CEO of Inclusion Australia.
“People with intellectual disability were promised access to COVID vaccines in the first stage of the rollout, but that hasn’t happened, leaving them exposed to any potential outbreak.”
People with intellectual disability who live in group homes are part of Phase 1A of the vaccine rollout due to their heightened risk of COVID. There are over 20,000 people with disability living in group homes, and most are people with intellectual disability.
“People with intellectual disability and their families are sick of the blame game about what’s gone wrong with the vaccine rollout – we want to see action, and we want to see it now,” said Ms McAlpine.
“I’m calling on the Australian Government to urgently review all aspects of the vaccine rollout for people with intellectual disability, and to get serious about getting it on track.”
“Inclusion Australia, and our state member organisations, have been increasingly hearing from people with intellectual disability and their families, that they are feeling forgotten and ignored in the vaccine rollout,” said Ms McAlpine.
“People with intellectual disability who live in group homes have been on lockdown for much of the last year – they need to be vaccinated now so they can see their family and friends, and get back to living their lives.”
“The best way for people with intellectual disability to be safe from COVID is to be vaccinated, and for their families and those who support them to also be vaccinated,” said Ms McAlpine.
“We welcome Minister Reynolds’ announcement of some targeted action in Victoria, however we need urgent measures now right across Australia to get the vaccination rollout on track for people with intellectual disability and their families.”
Make Decisions Real is a 3-year national project being run by Inclusion Australia. The Make Decisions Real project team is designing resources and training workshops for people with intellectual disability and their families to build skills in Supported Decision Making. The workshops will be delivered across Australia in 2022. Our resources and workshop materials are being co-designed by Peer Workers with intellectual disability.
Survey link
We warmly invite family members of people with intellectual disability to complete this short survey. Your answers will help us design resources and training that also meet the needs of family members supporting their loved ones with decision making. The survey should take 10-20 minutes and can be completed at any time. Any information and advice you can provide is greatly appreciated!
We would also like to invite you to an informal online webinar to share your experiences and knowledge of supporting a loved one to make decisions. Your experiences will assist with the design of the Make Decisions Real resources and workshops. This informal conversation will be held on Zoom and facilitated by the Make Decisions Real project coordinator at 1pm – 2pm (AEST) on Wednesday 23 June 2021.
Please click the link below to register for the webinar:
