People with intellectual disability saw group home as mini-institutions — places where they couldn’t choose who to live with, what to eat or what to do. They reported feeling stigmatized in the community because of living in a group home and discrimination within group homes by support workers. And they reported being assaulted in group homes.
Vincent, 56, lived in a group home that housed between 9 and 12 people until 2019.
He hated the group home. At the group home, he slept in a room just large enough to squeeze in a single bed, was regularly assaulted by another resident, was not allowed to choose his own meals and given food that he couldn’t eat because he has Type 2 Diabetes, and woken at 5.30AM every Saturday by a support worker and told to clean his bathroom.
‘It was bloody annoying,’ he said. ‘It’s too early at the weekend.’
Vincent said he didn’t feel safe in the group home and, for years, would lock himself inside his room with a padlock.
When his mother died in 2010, Vincent said that support workers cleaned out her house and threw away his personal possessions.
Vincent now lives with a friend in a house with modern amenities.
He wants to see all the residents of group homes to be released and given the choice to live where they want with who they want.
Nick, 32, lives independently.
‘Where I live there’s a lot of disability residential homes here. But you know what’s amazing is you don’t see them. You don’t see people with disabilities around because I really have to say this, and this is quite honest, is we talk about inclusion in the community, all right, but in group homes from what I’ve seen around my area there’s only one or two people we see out there with a disability. Otherwise you don’t see them. We talk about inclusion. We talk about freedom of choice. Well, I believe it’s not happening. …
‘Institutions are horrible … but see, with the group homes in a way I believe they’re like a mini-version because you don’t get to choose who lives with you. You don’t get much choice. You know, you don’t get to say … like if you want to go and have a coffee or something you don’t have freedom of choice. So that’s why I think that group homes become a little bit like a mini-institution.’
Donna is in her 50s.
She that people in the community didn’t want groups homes:
‘Where I live they were going to put a group home around here and all my neighbours put a petition out to say they didn’t want people with a disability living in their street and I found one of the neighbours that said it and I said, “Well, hang on, you don’t want people with a disability living in your street.” I said, “I’m living in your block of units.” … They shut up.’
Family members said the concept of ‘choice and control’ was often inverted at group homes, with staff instead of people with intellectual disability making the choices and having the control.
Miranda, who had Down syndrome, lived in a group home after she left her parents’ house.
She shared the house with four other people with disabilities.
Before moving to the group home, Miranda had run her own micro-business, making pasta — but a staff member wouldn’t let her cook. At the group home, she didn’t get to choose who she lived with and the front door and the refrigerator were both locked by staff.
Once a fortnight, Miranda would spend the weekend at her parents’ house.
Often, she did not want to return to the group home.
Angela and Carly
Angela advocates for her cousin, Carly, who lives in a group home.
‘There needs to be a lot of lot more training for support workers around people’s rights, including the UN Convention on the Rights of Persons with Disabilities.
‘Group homes are mini-institutions. … My cousin would really like to move out. … She doesn’t like the people that she lives with, [but] the organisation just try and keep her there. … It gets swept under the carpet.’
Angela said that Carly often lost access to the staff she preferred:
‘When she does tend to like one of her support staff, I find that … they get moved on. … Other support staff don’t like to be shown up, I think.’
Angela said Carly was dependent on staff for around-the-clock care and support:
‘I worry that she doesn’t get treated fairly because I guess she’s so vocal and stuff like that as well that people don’t like it. Certain support staff don’t like her because she’s vocal and not as compliant as the other clients in the house. … She’s not happy, but she’s a big – she’s a big earner for this service provider and they have control over her day-to-day life, almost 100 per cent.’
The group home staff have complained about Angela advocating for Carly. They have told her she shouldn’t be allowed to speak up for her relative because she works in the disability sector and, therefore, has a conflict-of-interest.
Advocates also saw group homes as mini institutions. Many advocates were concerned service providers were using NDIS funding to create a new generation of group homes that were little more than privatised institutions.
Often these group homes are one-stop-shops for residents, meaning they are seldom visited by anyone other than the employees of the service provider running the group home. Unsupervised, siloed care such as this is a recipe for abuse and neglect.
One advocate, Kelly, said:
‘There are new types of housing opening up under the NDIS that absolutely replicate institutional environments. There is no national plan for the closure of residential institutional environments and we need to, really need to, develop more genuine community-based housing and support options for people with a disability and increase the amount of affordable and accessible accommodation.’
She said the privatisation of institutions under the NDIS often falsely invoked choice and control:
‘They’re using the old “choice and control” as a way of saying, “Well, it’s people’s choice to live here.” But if there are very few other options or people don’t know what is possible then they’re not going to ask for it.’
Kelly gave the example of a new-breed of institution that was using NDIS funding to expand from 80 residents to more than 100 residents — and building the new housing near a sewage site.
‘No one else would buy a block of land there. I wouldn’t,’ she said. ‘Why is it okay for that to happen for people with a disability?’
In another example, Kelly spoke of a congregate living development that was known locally as the ‘veggie patch’.
‘It’s a target for drug users and for people to come and target people and, you know, pretend that they’re their friends and then to rip them off for their money,’ she said. ‘People with disability are seen as less than everyone else with less value in the community.’
In South Australia, advocates were concerned by the termination of the community visitor program in 2019 and the possibility of more undiscovered cases of criminal neglect and abuse like the case of Ann-Marie Smith in Adelaide.
When South Australia did have community visitors, advocates said they would often give disability service providers a week’s notice before inspecting a group home.
The NDIS Quality and Safeguards Commission told one advocate they would not make unannounced inspections of group homes.
A disability worker said:
‘They used to ring up, give us a week’s notice and let us know when they would be coming, exactly what they were going to be looking at and doing. It was up to us to contact the people that lived at that house’s families to invite them to come along and talk if they wanted to, and which we could obviously have made the choice not to do. But they didn’t attend every single service that we had.’
An advocate said:
‘Letting people know they’re coming — it’s a chance to clean up their act, you know, polish the floors and put the smellies out and all that sort of stuff, you know.’
During the initial rollout of the NDIS in 2016, VALID was employed to advocate for people with disability without next-of-kin or guardians living in State Government-run group homes.
They took part in 275 NDIS planning meetings for some of Victoria’s most marginalised, institutionalised citizens.
People who, a VALID advocate said, ‘had nobody else’.
‘I met what people called the kings and queens of various institutions,’ the advocate said.
‘This is code for the most violent people; so, if you are the king … it meant that nobody could touch you. And they were also the people who had no family, and they were also the people who had been most brutalised. And in meeting those people — many, many, of them — I learned a lot about the difference between rights and reality. And the truth is that all of those people have the right to move into a home of their own, to choose who they live with, to choose who supports them to make their own decisions, to have presumed capacity, to access supported decision making, to exercise their legal rights. All of those rights, they are enshrined in the UN Convention, they are in the NDIS Act — blah, blah, blah. I don’t think I succeeded in bailing one of them out [of a group home], regardless of their request for me to do so, because everything was set up for them to stay there. …
‘Advocates had very little capacity to influence what happened in their meetings. … I met a lot of people in that time who told me, very clearly, they wanted to move out. I asked for that goal to into the NDIS plan at the planning meeting. I don’t know what happened after that. We were not funded to provide any follow up. All we can do is hope that support coordinators and house supervisors bring the goals to life.’
The advocate said that the transfer of housing from institutions to group homes and the transition away from State Government-run services to non-government providers had opened a gap — with the state governments no longer providing last-resort housing for people with complex support needs.
The advocate said the places of last resort housing for people with intellectual disability were now hospitals, aged care facilities or prison:
‘That’s a much harsher end game for people with intellectual disability than existed before.’
In addition, the advocate said the lack of protection for group home residents meant none of the most marginalised people with intellectual disability were likely to appear before the Royal Commission:
‘How will you give evidence about your group home when you have to go home to that group home? Are you for real?’
Martin — a man with a disability who previously worked in the disability sector — said he received minimal training before his first shift in a group home:
‘My first day on the job at this particular organisation I was working at I had my interview at the transitional house and started my first day of work and then I was there for about 10 minutes to be shown how to do it. And then everyone left. And I was there to do the job. …
‘I had no training whatsoever. … That’s something that surprised me.’
Sophie, who had worked in disability services and residential care for children, said that the lack of mandatory reporting was appalling.
‘I’ve moved from working in the mainstream disability space to residential care for children who can’t live with their parents … in my two years’ work … I’ve had to do investigations for the Department on 12 occasions my staff have reported my own staff. And another eight times members of the public have reported my staff. So, 20 investigations I’ve personally had to do in two years. My entire time working in disability [services], which was the 12 years prior to that, I’ve never been asked to investigate any neglect or abuse allegations or claims against support workers because there’s no mandatory reporting and it’s not people’s legal responsibility to have to report.’
Sophie said group home residents who received all their care by one service provider were more likely to be at risk of abuse.
‘The people who are in those group homes that are only supported by one service probably are more likely to have limits on their decision making,’ she said.
Sophie said that, without informal supports from families or advocates, staff in group homes assume decision-making roles.
‘Even when there are formal things in place around guardianship,’ she said, ‘the opinion and the decision-making really still goes back to the staff being paid to look after them because they’re informing the decision of the legal guardian. And I think that that for me has never felt particularly right. Like, if we wanted to go back to a place where people had no choice and the staff were making all the decisions for them, then why put, you know, the Office of the Public Advocate in place and make it seem as though there’s someone helping making decisions when, realistically, it’s still the staff — just via a third party.’
Penny, a self-advocate, described group homes as ‘mini-institutions’ because residents couldn’t choose where they lived, how they lived or who they lived with. She said the lack of choice and control increased the risk of violence and abuse.
Lillian, an advocate specialising in housing issues, said housing was a human rights issue for people with disability. Outside of group homes, she said, people with intellectual disability often had limited housing options, and often ended up living alone, isolated and vulnerable. She said that there was a need for more creative, flexible housing models.
‘I know a lot of folks … who, you know, just get lonely and just need to have some folks around but don’t necessarily need to have that paid support all the time.’
Another advocate, Stephen, said that — unlike in aged care — the NDIS Quality and Safeguards Commission didn’t have the power to act proactively:
‘They’ve got no proactive capacity. … They respond to complaints. Well, you know there are many people who are really able to complain, but there are many people who can’t complain.’
Stephen said that the disability sector had gone backwards since the rollout of the NDIS:
‘It’s gob-smackingly disconnected. It’s a fragmented system. You may remember how the Productivity Commission said when it was doing its review of disability services that it was a broken system, yes? In many ways it wasn’t a broken system, it was an underfunded system. … We’ve actually gotten an even more broken system now.’
Advocate Vicky said:
‘I just don’t think there’s enough checks and balances to safeguard people.’
Advocate Donald said that group homes were only ever meant to be a ‘point of transition’ towards individualised living for people moving out of institutions:
‘The group [home] plans were only ever supposed to be a waypoint, a point of transition where people could, you know, basically debriefing institutional structure, develop skills, and then move into more individualised lifestyles … but it became an end point. … It becomes an end in itself because all those vested interests rally around it and capture people. That’s what goes on.
’We’ve got clients with close to $1 million [a year] spent on them, but their life hasn’t improved since institutions because of the crap services around them. Because it’s all about the structures, the institutional structures, the institutional mindsets of people without a real commitment to an understanding of what it takes to tap into the potential of the person and to support them to take control and to assert their own life. That’s what’s really sad. … After 45 years of closing the institutions and building community-based models it’s all still about the structures, about the models, but the true mission of being able to unlock people’s potential — no one is talking about that because that requires real resourcing, that requires you to actually have staff who are trained, who have serious skills. …
As a consequence, Donald said, group homes had become institutionalised:
‘We have to, as well as putting pressure on to get people into more individualised lifestyles, we have to keep the pressure on around the quality issues — you know, the training of staff, the effective management; all of those things, to ensure that people are supported probably.’
In Victoria, Donald said, the worst cases of abuse were usually found in group homes that had ‘imported’ the culture of the institutions when they employed the former staff from those institutions.
‘We imported staff with the same, you know, attitudes towards people into the group home structure, and they just set up camp … and in some areas of Melbourne they’ve just really been running the show for a long time as a real power block. And, so, any resistance against that sort of power has been very difficult. So, the idea that power should be shifted from the staff and from the service system and from the bureaucracy to the person with disability, you know, there’s a massive power struggle. And there’s very little power on the consumer side.’
Case Study: He died alone with $100,000 in the bank
This is the story of a man with Down syndrome who died alone at the height of the COVID-19 pandemic.
Gabriel was 60. He had Down syndrome and, after being relinquished as an infant, grew up in Kew Cottages.
When the institution closed, Gabriel was moved into a group home in Melbourne’s suburbs.
In early 2020, during Victoria’s first COVID-19 lockdown, VALID received a telephone call from a support coordinator. The support coordinator said Gabriel needed an advocate.
According to the support coordinator, Gabriel had fallen in the group home and broken his hip. He had surgery, but the hospital rehabilitation program — which was not geared to the needs of a person with an intellectual disability — had failed. Gabriel’s hip joint had frozen and he could only be moved with a hoist. His group home could not accommodate a hoist, so he was effectively homeless in hospital.
During the pandemic, Gabriel was moved from hospital to a transitional aged care facility to wait for another placement.
The group home was legally required (Residential Tenancies Act 1997) to notify the Office of the Public Advocate of Gabriel’s changed living arrangements but failed to lodge a Notice to Vacate. Instead, the hospital, group home and transitional aged care facility debated what to do with Gabriel. The support worker told VALID that there were not any decision-making supports — Gabriel did not have a say in his own future.
The support coordinator told VALID that Gabriel had spent four months in hospital and the aged care facility and was missing the other residents of the group home, who he had known since childhood.
‘He was crying the whole time he was there. He was distressed and afraid and calling out for people from his house who weren’t there,’ a VALID advocate said.
‘The support coordinator said, “Can you please help? I don’t know what to do. They’re all pushing for aged care. The provider’s for it, the hospital’s for it. I think they’re going to sign off on it. I don’t think it’s right. I don’t actually think this is what should happen.”’
Gabriel died the day after the support coordinator called VALID.
When a VALID advocate asked the aged care facility why an otherwise-healthy man suddenly died she was told ‘it was his time to go’.
There was no investigation into Gabriel’s cause of death. VALID did not have the authority to request a coronial inquest.
Shortly after Gabriel’s death, VALID was told that he died with more than $100,000 in savings – money saved on his behalf by a state-appointed administrator over six decades in the disability system.
That money could have been invested to aid Gabriel’s rehabilitation or secure housing of his choice. But the money wasn’t spent. Nothing was done.
Gabriel died afraid and alone.
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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