Congratulations to Fiona McKenzie, Michael Sullivan and Ian Cummins who were all awarded the Order of Australia this week.
The Order of Australia is an award given to Australians who have done important things in their community, or in their work.
Michael and Fiona are both from NSW and work with the Council for Intellectual Disability (CID). They have been recognised for their outstanding achievement and service for people with disabilities.
Michael Sullivan has a long history of advocating for people with an intellectual disability. He is a former Chair of Our Voice, the committee which provides advice to Inclusion Australia’s Board. Michael was also CID Board Chair, and was appointed as the first Chairperson of the Down Syndrome Australia Network in 2018. In 2017 Michael was one of the key voices calling for a Disability Royal Commission.
“Enough is enough! It is our time to be heard. It is our time for justice – now!” – Michael Sullivan calls for a Disability Royal Commission in 2017
Fiona McKenzie is the current chairperson of the CID Board. She was the first female chairperson with intellectual disability at CID. She has also spent many years advocating for people with an intellectual disability. This includes work with the Black Dog Institute to help people with intellectual disability learn and talk about mental health issues. She was a leader in CID’s Don’t Silence Us campaign for advocacy funding for people with intellectual disability in NSW.
Talking about her award, Fiona said: “It encapsulates everything, it’s an absolute honour to be recognised with an AM because it shows having intellectual disability you can achieve anything.”
Meanwhile in South Australia, advocate Ian Cummins has also received an Order of Australia. Ian is well known in South Australia for his work in self-advocacy and also representing people with a disabilities, especially working with JFA Purple Orange. This includes talking at the Disability Royal Commission in 2021.
Ahead of the Disability Royal Commission hearing on Australian Disability Enterprises, Georgie – a woman with disability in her 60s from Perth, Western Australia talked with Jamie Bannister about her long career.
Georgie is originally from Melbourne. She moved to Perth when she was 10.
Now in her 60s, Georgie works part time at Shelter WA, and does part time work for Developmental Disability WA (DDWA) as part of the Towards Inclusive Practice project.
In her spare time Georgie likes to catch up with friends for coffee, play on her iPad and barrack for the West Coast Eagles in AFL.
Georgie has had a long career, full of different roles. Her first job was in the 1970s, working for the Good Sammy charity in WA. “People were kind and friendly there.”
She then moved to working in a Good Sammy shop. The days were long, from 9-5 and 9-6 on weekends. “There was lots of standing up which I didn’t like as it made me very tired.”
One day in the 1980s Georgie saw a sign for Activ, a disability service provider in Perth. She put her name down and was invited to come in for an interview. She was quickly offered a place at Activ.
Her work included putting labels on beer bottles, and lollies in show bags. She worked five days a week, from 8.30am to 3.30pm.
Unfortunately, she does not have good memories of her time there. “I didn’t like it. Some of the staff you get on with, but others treated us badly. They would tell us to ‘sit down and do your job.’”
Georgie felt that the paid staff and the staff with disabilities were not treated the same. “They would have morning teas with nice food, but we couldn’t have any. We were not allowed or had to bring in our own.”
One time Georgie met up with her work friends for lunch on her day off. “I went to the bar and ordered a beer and the staff yelled ‘what are you doing Georgie?’ I said, ‘I’m having a beer, I’m allowed.’”
Georgie remembers the staff telling the ADE workers that they were not allowed to have the broken lollies they put in the showbags. “Then we would see them put them away in a drawer and eating them later.”
After getting her 5-year badge, Georgie decided to leave after 8 years. “They moved the place to another site. It was too far away. You had to pay for your own bus fare to get there so it wasn’t worth it.”
Later on Georgie worked for the City of Fremantle and Fremantle Hospital. “I promised myself I would never, ever go back to a sheltered workshop. I miss my friends, but I would never go back if you gave me $1000.”
Eventually Georgie found out about DDWA. She loves working there. “The people are like family here,” she says.
What needs to change about ADEs?
“Staff need training themselves on respect. The way staff treated people was not OK. We have the same rights they have”
What would you say to people who enjoy working at an ADE?
Georgie says that she has some friends who still work at Activ. One friend has been there for 38 years. “Some of the guys worry they won’t see their friends anymore [if they leave].”
“Some people like it, they think it’s great. But I get paid properly for my work [in the Towards Inclusive Practice project]. It helps me to budget and save for things.”
“Jobs are harder to get now because of COVID,” says Georgie. “There should be more help for people who want to get into open employment. Open employment is best. You get more money and real pay.”
What would you say to the Disability Royal Commission about ADEs?
“If I had a choice, I’d close them down. It’s unfair on the guys. I’d say you need to get every person out. Get them out of the workshops.”
Georgie can also see similarities with previous campaigns about segregation of people with disabilities. “It’s like the old institutions. People don’t have choices about where to live and work. I see some services where they spent lots and lots of money to make them all new again. Nah, close them down.”
Inclusion Australia is concerned about announcements this week about changes to home and living supports, and in particular changes to Supported Independent Living (or SIL) for people with disability who use the National Disability Insurance Scheme (NDIS).
As the national peak body for people with an intellectual disability and their families, we welcome discussion and actions to improve NDIS systems and processes and make it easier for people with disabilities to access the supports they need to live their lives.
However, any changes must reflect the very real challenges experienced by people with disability and be developed in partnership with the disability community to avoid leaving people without essential supports.
SIL is a primary support for people with an intellectual disability. This includes many people who have been institutionalised all their life and those who have complex support needs. These are the very people the NDIS was designed to support.
We and other disability representative organisations are regularly hearing anecdotal reports around cuts to SIL in people’s NDIS packages. We are naturally cautious that the changes to SIL are being rushed through in a climate of ongoing concerns expressed by the Government and the National Disability Insurance Agency about scheme sustainability and reducing costs.
This should not be the driver for change, nor should announcements that fit in with the election cycle.
We are also concerned about the move to ‘step down’ or reduce the supports for people with disability where they live.
Inclusion Australia CEO Catherine McAlpine said “Whilst we believe there is a sincerity to make the scheme work better, we fear that these changes are being rushed through. We do not wish to see changes that will mean people are left with insufficient supports. This will lead services to cut corners and will result in a decrease in the freedoms and rights of people with disability.”
“We also want to see more consideration of other safeguards people need, including funded independent support for decision-making that ensure people are not being forced into making ‘choices’ against their best interests.”
It is also critical that other parts of the system work to support the aims of the NDIS. People with disability are part of the broader Australian community. Inclusion Australia calls for all states and territories to increase the range of accessible, social and public housing options. Without this, people ‘stepping down’ from SIL to an Independent Living Options (ILO) package will end up languishing in dangerous and insecure accommodation such as boarding houses.
Scheme sustainability is vital to the success of the NDIS. However, changes must be co-designed and implemented in partnership with scheme participants and disabled peoples organisations. To do otherwise only creates new problems and puts the lives of people with disability at risk.
World Down Syndrome Day 2022 is on Monday, 21 March. The theme for this year’s event is ‘What does inclusion mean?’
Our colleagues Brooke Canham and Tara Elliffe took time out from their work to share their thoughts on what inclusion means to them with our Inclusion Manager, Becky Rowe.
Thanks for talking with me today. What does inclusion mean to you?
Brooke: Inclusion means that everyone is working together as a team.
Tara: Inclusion means being part of a community [with] lots of different options for us.
What does inclusion look like at work?
Brooke: In the workplace I feel having my opinion and having my voice heard is being included. I get to say what I want to say, and I’m not pushed to the side…
Tara: [It’s about] new challenges and adventures, to understand what we have to say – work in a team and celebrate Down syndrome with me!
How do the people you work with make you feel included?
Brooke: [They] let me say what I like to do during the workday. [They also] make a work plan to help me focus and be included in the team and understand all the things. Also, my coworker talks to me and tells me things. I feel included because she is comfortable around me to include me.
Tara: [My co-worker] understands me… he knows me. He’s got a good sense of humour, he’s funny. He teaches me all sorts of different kinds of things like leadership. [My boss] also includes me. She has a son with Down syndrome. Parents who have good relationship with their daughter or son with Down syndrome [helps them to support me].
What can other workplaces do to make people with Down syndrome feel included?
Tara: They should be doing a lot of training of how to support us. There should be training on disabilities. [Especially] training with people with Down syndrome as presenters. We all have a voice to use – just listen to me!
Brooke: Don’t discriminate. Give them a try. If we need help, let us ask questions. Never judge a book by its cover. A lot of people are very rude to people with Down Syndrome.
Tara: Workplaces that don’t include you make me so stressed. I got a migraine and my body shut down. I was very stressed and had to leave that job.
Brooke: To be included is to be invited to staff functions, don’t be rude about it! My other work has included me in their team [Brooke also works in a coffee shop]. They are very inclusive there, we always talk together, we always communicate on a higher level. I’m happy my boss reached out and wanted to work with people with Down syndrome. He says it makes him happy.
What does inclusion look like in the community?
Brooke: [It’s about] going out to places and being included in the things you love to do.
Tara: I socialize, coffee, food, shopping, hanging out with my family, music, football, games, walking, sky diving! My friend did it so why can’t I do it?
Brooke: Sometimes it could be a bit better. Some people stare at you, and I don’t feel like that’s very inclusive. If something goes wrong… if you’re upset then people in the community don’t come and make sure you’re OK. I think that’s more due to COVID. Like people trying to keep their distance.”
Tara: I have 3 brothers. It’s difficult the impact of Down syndrome in my family. It’s a challenge. [But they make me feel] good because their friends are my friends too. I’m an aunty of 2 girls who are 6 and 2. I like to teach the girls to learn about people with Down syndrome like me. Their cousin has Down syndrome too. I’m not the only person in the family with Down syndrome. There’s 3 of us.
Brooke: [Being included] is a positive feeling. It makes you feel you know someone in the community is there. You know you’re being treated the same way as other people.
How does your community include you?
Brooke: A lot of family include me… They always ring me making sure I’m OK. They include me in family events. Mum always asks me to come round for dinner and includes me in fitness – like going to spin class together. Dad calls me and picks me up from places… asks me what I want and cooks dinner. [My sister] includes me in a lot. She does so much for me. She includes me with going out with her friends sometimes. She includes me in so much. My neighbours include me as well. [We] talk when things go wrong – like if someone breaks into your house – and they help you out. [We need] more people looking in and being aware that someone who has Down syndrome may need help.
What can the community do better to include people with Down syndrome?
Brooke: Not just looking at people and putting a label on them. [Having Down syndrome] can be challenging… people label that as ‘you can’t do this’ and ‘you can’t do that’. That ticks me off! That really gets to me.
Tara: Groups, like community groups, for everyone. I’m starting a group of my own soon. It’s for people about my age – adults. We’ll hang out, get coffee, lunch, movies, social outings…
Brooke: At the shops… People speak to us as babies and it’s very patronising. Everywhere, the hospitals, the gym, just everywhere… needs to be more positive. It’s okay to have a disability! It’s okay and people don’t understand it’s okay.
Tara: Don’t be afraid of showing people what is you. I am proud to have Down syndrome. I have friends with Down’s and friends without Down’s. I have both. They treat me as a normal person. I am a woman, hear me roar!
Inclusion Australia has joined with organisations from across the disability sector to raise concerns about the proposed Religious Discrimination Bill. Read our joint statement.
We, the undersigned, are deeply concerned about the harmful impacts the proposed Religious Discrimination Bill will have on Australians with disability.
We all support protection against discrimination on the ground of religion and of religious freedom as essential to any thriving democracy, but this must not be allowed at the expense of the rights and dignity of others.
We have particular concerns with the Religious Discrimination Bill and its provisions permitting ‘statements of belief’ overriding the existing legal and policy protections for people with disability from humiliating, insulting, ridiculing and demeaning behaviour. This gives licence to an increase in such behaviour towards people with disability, undermining our confidence and sense of worth as Australians.
There are significant risks particularly for people with disability who have intersectional identities like those from communities that are LGBTQAI+, Cultural & Linguistically Diverse, Aboriginal and Torres Strait Islanders, who already face intersecting discrimination, along with women and girls with disability as well as children and young people with disability as they grow and form their own identity. We see discrimination of all people with disability being exacerbated and openly allowed by this Bill.
Discrimination protections seek to ensure that people are not treated less favourably, yet the statement of belief provision will allow people to be treated in ways that demean or humiliate them because of their disability. This is clearly less favourable treatment and will be expressly permitted by this new legislation, overriding the provisions of the federal Disability Discrimination Act 1992 (Cth) and equivalent provisions in every State and Territories law’s.
People with disability are often subjected to unwelcome & uninvited statements of religious belief that demean disability as the result of sin, possession, or karma. Some examples that they have been told:
their disability is a “punishment from God for their, or their parents’, sins”
their disability can be “healed by prayer” or by “living virtuously”
they “deserve to suffer from their disability for what they have done in a previous life”.
While these may seem extreme religious views and statements, they are views commonly expressed to people with disability and the Bill will legitimise these views as long as they are personally held beliefs of religious doctrine and are made in good faith. It would be extremely difficult to prove that a person expressing such views is not acting in good faith because they genuinely hold the view that what they are expressing is their religion’s will and they are seeking to “save” the person. The limits in the Bill on very extreme statements are insufficient to protect people with disability from personal, hurtful and demeaning statements that undermine our dignity and humanity.
All people with disability deserve services, education, employment, health care and communities that are free of prejudice, stigma, denigration, and discrimination. The Religious Discrimination Bill will encourage prejudice, stigma, denigration, division, and discrimination against people with disability, and undermine all efforts to build and sustain an inclusive Australia.
These are impacts that undermine Australia’s commitments to the equality, and equal dignity and rights for people with disability under:
the UN Convention on the Rights of Persons with Disability
the vision of Australia’s Disability Strategy 2021–2031
the purpose of the Disability Royal Commission
the principles of dignity and equity that Australian disability communities continue to fight for.
We are strongly opposed to this legislation and urge you to speak and vote against the Bill if Part 2 is proposed to be retained in any format.
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.
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
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
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
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.
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!