People with intellectual disability we spoke to felt confident talking about their human rights – reflecting the fact that they were self-advocates directly involved with the work of IA. However, they believed that many other people with intellectual disability were not aware of their rights. They were concerned that lack of awareness put other people with intellectual disability at risk. All reported being routinely ignored and harassed in the community.
Wayne is in his 50s.
‘We need to look at how people treat us … They need to ask us what we want. Instead of telling us, ask us. Some people don’t do that. … They always talk to the person next to you. That’s rude.’
Luke is in his 30s.
He said his rights were ‘very well respected’. However, he said that he only felt ‘70 per cent or 80 per cent safe’ when he was in the community.
‘Whenever I go outside in the community, I always wear sunglasses so I can blend in a little bit and that makes me feel a lot safer when I’m out. The only time when I don’t feel safe is when I take the train. On my way home during the pandemic the trains are always empty, and I always like to be in a packed carriage so I feel safer but when I’m in a train with not many people I keep an eye out … in case someone comes up.’
Tim said he was ‘really reluctant’ to trust people.
‘I’ve had to work [for my rights]. … There has been a lot of obstacles to get over to get to the point I’m at now. … You have to, like, prove you’re capable in some senses. … If you automatically have a label on your saying you’ve got a disability of any kind, you have to prove that you’re capable to fit into the community.’
Calum said he had been recently ‘hassled’ by a bus driver who accused him of not tagging on with his travel pass and said she didn’t like driving ‘people like you’. He said:
‘I don’t like [public transport] because … it’s not safe for people with disabilities.’
Calum made an official complaint to the bus company.
He said he only began to understand his rights after leaving foster care at the age of 18.
‘The simple fact is that we seem to be left out of our rights. We’re not told what they really are,’ he said.
An incident underlines Calum’s point.
At 17, Calum was told he had to go to court. The court hearing was to appoint a guardian, but that was not explained to Calum.
‘They just told me to go to court. … I’d never been to court before, so I was scared of going in there. I thought I did something wrong. That’s the only reason I thought I was going into court. I thought I did something really bad.’
It was only after turning 18 that Calum understood his life was controlled by a guardian. He worked, but didn’t have control of his own money, couldn’t travel interstate to visit his family, wasn’t allowed to buy new shoes and wasn’t able to see his friends when he wanted.
‘It was like being a kid,’ he said. ‘It was making me feel bad. Feel depressed. I felt really down.’
With the support of advocates, Calum won his independence from his guardian.
He now works and lives independently.
‘I get to choose,’ he said. ‘I just want to live an average, normal life. … Just being like a human being.’
Eileen said people with disabilities were targeted by online scammers on social media platforms such as Facebook.
‘People manipulate you to try and get money out of you. Or if you’ve done a will to try and get your will. So, it’s all dangerous.’
Penny believed that the NDIS has changed service providers’ attitudes to people with intellectual disability.
‘It seems to me more on the dollar value … rather than promoting choice and control,’ she said.
With the transition to the NDIS, Penny found that her service provider gave her less of a say about the support workers she let into her house. In the end, she fired the service provider and now uses her NDIS package to directly employ her own support workers.
Penny said many people with intellectual disability did not have choice and control and were ‘a little bit railroaded’ by service providers.
‘You’ve got to be able to yell,’ she said. ‘That’s why advocacy is important. … They stand beside the person with a disability while they speak up for themselves. … Independence is the most important thing.’
Martin used to work in disability services. He now has a disability and does not work. He spent two years as a client of a service provider, but now directly employs his own support staff.
‘I found the more I wanted independent choice the less they [the service provider] wanted to negotiate. … They like doing things with a minimum of staff supervision. … A lot of the support workers I had been sent by this organisation I have actually had to mentor. They’d be lucky to have Cert 3 [qualification]. … They are virtually unskilled.’
Martin said his experience made him worry about people with intellectual disability who couldn’t navigate the service system:
‘I’ve got a reasonable amount of knowledge under my belt and they were sending me people that were all but untrained. How do these people that have intellectual impairment, that don’t have access to an advocate [cope]?’
Family members said that, although people with disabilities had theoretical rights, they were often practically powerless.
Angela, a disability worker who advocates for a relative, said:
‘Some families and a lot of organisations take away a lot of the rights of people with a disability, which I’ve found working in the sector as well as having a family member with a disability. … People with a disability should be training people, like support workers or people in the sector, about how [they want] to be treated. It should be everywhere, you know, within the NDIA; everywhere.’
Jane and Ava
Jane, whose adult daughter, Ava, has a disability, said:
‘There’s assumed rights for everyone but there’s perceived modified rights for people with intellectual or physical disability, where people think, “Maybe they don’t need all those rights,” or “Maybe they don’t have the same capacity to take on the responsibility those rights give them.” There should be modifications to allow everyone to have those same rights.’
Jane said that people were more likely to build a ramp so that a person in a wheelchair could access a building than explain human rights in Easy Read to people with intellectual disabilities.
‘People can come to understand that a person in a wheelchair is still a full person, but as soon as they see the shape of eyes of someone [such as a person with Down syndrome] in a supermarket they make a quantum leap about how they’re going to interact with that person based on nothing but the shape of their eyes.’
Jane said society should assume the competence of people with intellectual disability:
‘It all comes down to scaffolding. If you didn’t speak, if English wasn’t your first language but your input was valued, I would find a way for you to understand what I want and what you can give. … I would find an interpreter. … But people don’t afford the same cognisance to people with an intellectual disability, who would have the same capacity to give information if they had “interpretation”. … It all goes back to assumed competence.’
Advocates across Australia were concerned about the rights of people with intellectual disability. All agreed that — legally speaking — people with intellectual disability had the same human rights as any other member of the community. All agreed that — practically speaking — those human rights are either ignored or assumed to not apply to people with intellectual disability.
All agreed that there was an urgent need for independent oversight through initiatives like community visitor programs — which have been run down or abandoned by most jurisdictions. The horrifying death of Adelaide woman Ann Marie Smith in April 2020 amplified advocate concerns. Another disturbing finding was that almost every jurisdiction reported cases of child protection taking the children of parents with disabilities without cause.
Kelly has advocated for the rights of parents with disabilities for 20 years.
‘There’s an absolute overrepresentation of parents with intellectual disability in child protection cases,’ she said. ‘It’s clearly discrimination. Parents are scrutinised far more than any other parents because of their intellectual disability. There’s very little belief [by child protection] that they can learn skills to parent their children.
‘There needs to be a human rights framework put over the top of it … from the perspective of the [UN] Convention, you know, the right to family and the right to parent. The court process is very unfair to these parents because there’s a huge imbalance of power. …
‘If you’ve got a parent with an intellectual disability who’s about to have a baby there’s – even in the NDIS — … a real battle to get funding for that parent to develop the skills as a parent. They don’t see that as within the scope of the NDIS. … Research shows that people with intellectual disability can learn parenting skills, but they need to learn in the environment where they will be parenting – in other words, their homes.
‘They’re right against it from the start because the child gets taken away and they … have access to that child for maybe an hour a week. And, so, how can they develop the skills within that timeframe to demonstrate that they can be capable parents? It’s just this great big vicious circle. … Once the child is taken away it is absolutely, really impossible to get the child back and for there to be any meaningful opportunity for them to develop the skills.’
Case Study: Parents with disabilities
In 20 years of practice Kelly said she was only aware of three cases when a parent with a disability recovered their children from child protection.
One of the three cases where a parent recovered their children is illustrative because it was caused by two branches of the same government department.
In this case, a mother with a disability had her twins taken into state care as infants. When the twins turned 16, the long-term case management branch of child protection wanted the mother to take them back to live with her and their 2-year-old sibling. The 16-year-old twins started living with the mother and began expressing an interest in sex. The mother became concerned that her 2-year-old child might be abused by one of the 16-year-old twins.
The second branch of child protection, dealing with short-term intervention, and threatened to take the 2-year-old into care for protection. In response, the mother started sleeping in her car with the 2-year-old to protect the toddler from the teenagers. Despite the fact that the 2-year-old had been placed at risk because child protection insisted that the mother take her 16-year-old children back, child protection intervened and took the toddler.
With help from advocates, the mother won her child back.
Kelly said that, while child protection did not hesitate to take a child from a parent with a disability, they were often reluctant to support a child with complex support needs, citing a case where the Department refused to support a neglected, at-risk child despite strong lobbying from advocates and the child’s school.
‘I firmly believe that if that child didn’t have such complex support needs and she didn’t have a disability that she would have been removed immediately,’ she said.
Another advocate, Natalie, said:
‘We are having a lot of cases coming through of very poor practice in child protection, very poor understanding of intellectual disability and enormous discrimination without having an understanding of what discrimination looks like. It’s the same in the criminal justice system. These are inherently oppressive systems based on blaming people for their behaviour.
Natalie said the taking of children from parents with intellectual disability was not just an Australian issue. It was a global issue, she said:
‘Intellectual disability and impaired cognition are inherently seen as a risk factor, which in itself is incredibly discriminatory because it’s not about the person’s skills to parent. It’s about linking cognition to parenting. … Parenting is not rocket science. It’s a set of skills that you can learn. … We know what the research tells us about attachment and trauma for children — of being removed from parents — and, so, instead of providing support for parenting we have this really bizarre system where we just take the children away and traumatize them. That’s also incredibly discriminatory, that we’re not pumping in support for parents with a disability to be able to parent.’
Natalie knew of at least one case where the trauma was multigenerational. In that case, three generations of a family with intellectual disabilities — a grandmother, daughter and grandchild — had been taken into state care. The grandmother and mother had both been in foster care. The cycle of abuse was completed when the grandchild was taken by child protection and placed in the care of her great-grandparents — because the grandmother had originally been abused by the great-grandfather.
The advocate said the grandchild, who has autism, was taken for the wrong reason:
‘One of the things that we found that was really difficult to overcome was there were all these reports about injuries to one of the children and that they just assumed it was abuse and yet the mother and the grandmother were saying, “We don’t understand it. He just hurts himself all the time.” … What child protection hadn’t taken into account was the fact that children with autism can have difficulty with spatial perception and also a higher pain threshold.’
Lisa said the impact of child protection policies to take the children of people with disabilities was ‘devastating’.
She gave two examples of child protection actions.
In the first case, the mother was a woman with a disability who had been abused as a child by her father, removed from her parent and placed in care, then abused in care and returned to her parents. In 2017, the mother, now in her early 20s, had her first child taken by child protection because she had an intellectual disability and had been in care.
‘The poor woman is then having to give her child up to go into the exact same system that she encountered abuse in. That is incredibly traumatising. … Her second child was taken at birth. She had been told she would have five days, but they [child protection] reneged and took the child at birth.
‘Once a child is placed into care a mother has to prove that she has capacity as a parent, but it’s incredibly hard to prove your capacity as a parent if you’ve never been a parent. … Many of them [parents with a disability] will fail the test because they have no idea [about how to parent]. So, then they have supervision orders put in place so they can maintain some contact, but they’re all supervised visits and you’re trying to help them develop a bond with their baby, but they’re in a very fragmented situation.
In the second case, another mother with a disability had two children in two different foster homes. The mother was determined to visit her children twice a week. As a consequence, she was spending four days a week travelling on public transport to see her taken children.
‘It’s devastating. It’s really shocking,’ Lisa said.
Brian said community attitudes towards people with disability had improved since the 1980s, but there was an urgent need for widespread, systemic reform.
‘We’re still in a situation where most states have got guardianship legislation which is in … various states of antiquity, and you know it’s not for want of law reform reports sort of guiding the way forward. We’re still in a situation where … this whole notion of supported decision making is seen as a bit weird in relation to people who are perceived as inherently lacking capacity. And you know the paternalistic approach … is still one that resonates very strongly with politicians and bureaucrats.’
Brian said reforms should be guided by a commitment to self-determination:
‘Self-determination is about treating a person the way they want to be treated rather than treating them how you would want to be treated. It’s about taking the time and effort to get to know and understand the individual.’
Without a systemic commitment to self-determination, he said, bodies such as guardianship tribunals were ‘not listening sufficiently to the person with disability’ and ‘taking a paternalistic approach’.
On the positive side, he was adamant that community attitudes had improved:
‘People with intellectual disability are much more visible and part of their communities. And I think that’s led to a change in community attitudes. And when I think about the revolting scare campaigns that were waged in the ’80s, in relation to people moving from institutions into group homes and how easily local communities were stirred up into seeing these as dangerous “other” revolting people. … a scare campaign in New South Wales … was about how “these people, they shit all the time and so they’re going to overload the sewerage system.” … That was pushed by the institutional staff.
‘I’m not defeatist at all about changing attitudes. I think that community attitudes have changed positively, but we’ve still got a long way to go.’
Another advocate, Donald, said:
‘‘People don’t really think deeply enough about what it [self-determination] really means. They think it’s about simply about giving a person a choice between two or three options — do you want tea or coffee? and at what time of day? — … when it’s something much more fundamental. … There is this real question of: Are people able to assert their will and take control of their own decision making and their own life? And that only comes, that self-determination light only shines, when there’s these other things going on in that person’s life. The endorsement … that they are a valued, equal human being. When people are listening to them when they express themselves … and not just patting them on their head. … For people with disability it’s been this disempowerment cycle.’
He said that advocacy was a ‘critical driver’ of self-determination:
‘Advocacy at its most powerful understands that it is there to empower the person to speak up to assert their rights, but every moment it stays in front of the person it runs the risk of disempowering that person. And so this is a subtle, nuanced process, the empowerment process of the advocate being prepared to stand up in front and defend and protect people who are not able to protect themselves…and then ultimately standing behind and supporting that person to grow.’
‘And when I say advocacy… it’s not as effective having self-advocacy without advocacy and vice versa. Advocacy that purely stands in front of people and represents them I’m very suspicious of because of the power of that representative role.
Numerous advocates expressed concern about the lack of advocacy and self-advocacy groups in South Australia. The South Australian Government defunded disability advocacy in the mid-2000s.
One advocate, Amanda, said:
‘An important point is about the state government kind of wiping their hands of disability now and really saying, “Well, that’s NDIS.” But there’s so many people that aren’t covered by NDIS and then organisations like SACID [South Australian Council on Intellectual Disability] and, you know, other kinds of volunteer- or consumer-led organisations who are independent of the NDIS are really important in being a place where people can come to get advice or information that is free of that link to the NDIS.’
Another advocate, Stephen, said:
‘What really concerns me is the abuse that occurs basically through acts of omission. The things that don’t get done. … Over the last few years, I’ve done some consultancies … looking at day programs where people, you know, they leave their house or their parent’s house, and go to some day program. And there are some [day programs] that do really good things … people are learning things, but there are many where they just sit around and do nothing and families describe it as day custody and, largely, people are not learning skills. … In my view they’re not reaching potentials that they could, and in my view, that’s being abused.’
Stephen said that the issue was directly related to bad governance by the boards of service providers:
‘This [lack of oversight by CEOs and boards] is endemic in the system. I mean, it’s the reason that we’re having two Royal Commissions [in aged care and disability services].
There are boards where people, you know, have been on a board for nine years and have never met a person with an intellectual disability. …
With governance generally. You know we’re not doing this terribly well in Australia. …
‘It starts with a commitment from the board. Stop believing your bloody publicity. … Find out what’s going on and be committed to fixing it. … You know the thing that really concerns me is that if we concentrate on, you know, the bashings, the rapings, the stealings, okay, we might suppress them. But if we were to lift the quality of the system to a different level … they [abuses] are less likely to appear in a population that is more connected and more confident.’
Stephen had worked with providers to create mechanisms to properly measure whether services met the needs of clients. He said it was sometimes difficult, but almost always possible, to create client-focused measurements:
‘These things can then be used as a mechanism for continual improvement. More importantly, they give a message to staff that these are things that we [the provider] are taking seriously and you need to lift your game. … One of the things that’s occurred in our systems that we get an equilibrium of comfort. It’s where workers are not having to sort of bust their boiler and where management is not having to nag, you know, give them a hard time and make their lives difficult. … So, you get this sort of equilibrium of comfort. Where you know nothing bad happens … but nothing good happens [because] basically no one gives a rats-arse.’
Lillian said that the best way to change community attitudes to people with intellectual disability was to focus on schools.
‘I think it starts from education. Like, we don’t get education right. So, you know, if you’ve got kids who are segregated from, you know, primary school, then you know other typical kids grow up having never seen another person with a disability or a difference. Then how do we expect anyone to kind of be included? Plus, teachers aren’t actually taught how to teach kids with disabilities, so I think it’s like a six-month thing, maybe, at university.’
Amy said there was a need for legal reform in every jurisdiction, but no appetite for change from government.
‘Legal change is a long way off. … There’s just not a lot going on. At the same time as the NDIS Act has all those nice statements about building capacity, and you know all that kind of stuff, but the guardianship system and everything associated with it is out of step with the NDIS.’
Amy said there were limited options for including people with intellectual disability in decision making around their own lives:
‘The state has an obligation not only reform guardianship laws to meet the UN Convention, but also to appreciate that by reforming laws you’re also providing some structure, education and guidance for families or services, or anyone interacting with people with intellectual disability, to see them differently.’
Currently, she said, the ‘binary approach’ taken to legal capacity — where people either did or did not have capacity — limited the system’s ability to enable self-determination.
‘The idea of stretching out the idea of capacity and moving more to assessing support versus assessing someone’s individual capacity is, I think, really critical to the rest of it … because then that leads to adulthood where decisions need to be made. And, of course, not everyone is going to be able to be full decision makers and but, even there, it’s important that the focus is still on: How can someone be involved to the greatest extent possible for them in their situation? And how can decisions still be made centrally to that person, even if it’s just their likes and dislikes? Even if they’re not able to be very clear? …
‘We’ve signed up to the UN Convention and we put in our excuses for Article 12 [regarding equal recognition before the law], which I completely understand because our guardianship system just is much more advanced than most of the rest of the world. It does a lot of the things that other countries are still aiming for, but it still has that binary presence that I think really shapes a lot of other experiences. So, I think we need legal change and the legal change has to cover … a concept of support rather than individual capacity.’
Case Study: Frightened of child protection
This is the story of a mother with a disability who gave birth in a private hospital because she was concerned she might lose her baby to child protection services.
Penny is in her late 30s. She has a physical disability. Her husband has an intellectual disability.
The couple have a 3-year-old child who was born in the private health system.
They opted for a private hospital for two reasons.
First, Penny had previously suffered a miscarriage in the public health system — and had numerous problems with doctors in the hospital. ‘They would speak down to you and I don’t think they would treat you that way if you didn’t have a disability,’ she said.
‘I went private the second time around, so we paid a bit more to go see private doctors and I found I got treated better. People would explain things to me properly and would treat me like a normal human being instead of someone with a disability.’
The second reason Penny went private is shocking.
She said she was worried that, if she was in a public hospital, she would be judged by medical professionals as an unfit mother because she had a disability and reported to Child Protection.
‘I was frightened of that [having trouble with child protection]. … I think if I was in the public system it would have been different, but because I was in the private system there was probably less judgement there because I had the money and the means to pay.’
These stories were collected and published as part of Inclusion Australia’s submission to the Disability Royal Commission in July 2020.
Blue Knot Foundation runs free counselling for people with disability and their families if this story has raised concerns for you.
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