ROYAL COMMISSION: Strict rules and inconsistent care

Chair of the Royal Commission, Ronald Sackville, says that group homes are an important topic for the Commission to cover since there are roughly 17,000 people with disability living in group homes around Australia.

On the first day of the Commission, Dr Peter Gibilisco provided a statement about his lived experiences of receiving accommodation and support in a group home.

Dr Gibilisco is an honorary fellow at the University of Melbourne and has a PhD in Sociology.

He was diagnosed with Friedreich Ataxia at 14 years of age, which is a rare progressive neurological condition that affects mobility.

Dr Gibilisco was living in an accessible unit in Dandenong, Victoria, receiving carer support before the Department of Human Services could not allocate an extra three hours per day to keep him safely and productively within his own residence.

In 2011, he moved into shared supported accommodation in South East Melbourne, where he has remained since.

Dr Gibilisco says his move into supported accommodation resulted in an extreme loss of control of his life in both a personal and social sense.

He has had issues receiving adequate, or timely, care from staff and even experienced sexual assault on several occasions from a staff member while in his current group home.

Dr Gibilisco’s aim for fronting the Commission was to raise awareness about people with disability and their right to live life how they want to and safely.

“Success for me, like many others, is an ongoing dream but I tell myself that I must be realistic. I have had to learn the discipline of living within the confining frustrations of Friedreich Ataxia and its associated problems including the social ones,” says Dr Gibilisco.

“I simply want to live my life as much as I can on my own terms, that is, I am happy and even eager to play the best hand with the cards I’ve been dealt. This is my first priority. If this seems like a cry, it is not a cry for sympathy but instead for empathy. 

“I believe that pragmatism, altruism, passion and empathy are the key factors that need to be affirmed in ongoing positive action if a workable disability sector is to provide the service it is to provide.

“In relation to pragmatism, we need to look beyond one size fits all theory and be open and honest about our plans for the future. An individualised form of practical thinking is a high priority in today’s disability sector.”

The second witness on Monday was AAI, referred to as Ms A, who has a daughter with an intellectual disability and arthrogryposis.

Ms A’s daughter, AAH, is non-verbal and cannot walk unless assisted with a walker. She needs support in every daily aspect of her life.

Ms A described the experiences of her daughter within group homes around Geelong and Echuca in Victoria.

She says her daughter has experienced both a facility that did not treat her properly or provide her quality care and a facility that is too rigid in its institutional rules, which limit AAH’s ability to do ordinary things.

“I wanted a place where my daughter might enjoy an ordinary life. To me, that means a life without restrictions. She should have the ability to decide the things she wants to do and take risks if she wants,” says Ms A.

“I wanted a place that I felt would let her live her life in the best possible way, close to her family, a place where I could support her with advocacy if needed.

“Ever since my daughter moved into the group home accommodation, I’ve often felt let down by the support that is, that was provided to her. I had felt that unless I was checking to ensure she was being cared for properly and advocating for her to be treated like an ordinary person with her own preferences and views, she could not receive adequate care.”

Group homes are better, but not the best

Day two of the Royal Commission heard from a range of industry and academic experts around the history of group homes and deinstitutionalisation, practices in group homes that can operate to cause violence and abuse, and the development of safe strategies.

Dr Ilan Wiesel was the first witness of the day, a Senior Lecturer in Urban Geography at the School of Geography, University of Melbourne.

His primary area of research is understanding the social geography of cities with a particular interest in social inequalities in cities and aspects that create disadvantage in urban areas.

A particular research focus is around people with disability and questions around housing, institutionalisation of people with disability and how it relates to urban and housing policy.

Dr Wiesel explained deinstitutionalisation as a movement in the 1960s that closed and downsized or redeveloped institutions and shifted towards community-based housing and support for people with disability.

“There was mounting evidence of the abuse and, I guess, the neglect [or] restriction of individual freedoms that was taking place in institutions, various places,” says Dr Wiesel.

Dr Wiesel says that a parallel can be seen between deinstitutionalisation and an increase of people with disability who are homeless or incarcerated in prison.

He admits it hard to draw a direct link between deinstitutionalisation and that, however, he says there was not sufficient provision of community-based housing to meet the needs of all people with disability when deinstitutionalisation occurred in the 1960s.

The movement towards group homes Dr Wiesel described as “economies of scale” since it was expensive to provide one on one support for every resident to live on their own.

“I think the ideal is where people have a choice about where they are housed and with who they live, and I don’t believe most people would have chosen to live in group homes but I think that they should have been asked and they hadn’t,” says Dr Wiesel.

“There was no choice for people about where they are going to be rehoused. There was no choice for people about who they lived within a group home.”

Dr Wiesel admits that evidence internationally and in Australia shows that care in group homes is better than when people were in institutions, however, there are serious problems with the group home systems.

He says outcomes for residents were inconsistent across different group homes, there are problems around choice, and long waiting lists to enter group homes, which has resulted in a “crisis-driven approach” to vacancies and allocation in group homes.

He adds that for the current problem to be solved, there needs to be a national program to build a supply of affordable housing, a scale of about 100,000 new homes.

“Disability-specific lawful violence”

Dr Claire Spivakovsky was next to the stand, she is a Senior Lecturer in Criminology at the University of Melbourne and has been researching the governance of the lives of people with disability in regards to laws.

This includes social, cultural and institutional processes that dictate the sort of lives people with disability can have under the law and the problems within that.

Restrictive practices used on people with disability was what Dr Spivakovsky described as “disability-specific lawful violence” and if it was happening in any other population group, the public would be outraged.

Dr Spivakovsky explained the current Victorian Disability Act allows supervised treatment orders for people with intellectual disability within a group home, which effectively gives the provider approval to use chemical castration for up to 12 months on a person to change their behaviour.

Dr Spivakovsky explained to the Commission that there are actually four forms of restraint; chemical, mechanical, physical and seclusion.

“The first thing that I would say is that there are multiple problems with restrictive practices but one of the things that I find very problematic about them is that they sit on this broader continuum of control and containment, and what is allowed to be done to people with disability that then, I guess, blurs the line between when violence is permissible more broadly,” says Dr Spivakovsky. 

Dr Spivakovsky touched on the third aspect of her research around restrictive practices, why they exist and why the control might occur in group home settings.

She says that it seems to come to reputational risks and concerns for why restrictive practices are used on people with disability.

“It seems that there is then this kind of implicit and potentially explicit pressure that is then placed on staff to manage these situations in which potentially something could go awry within the community and it could be seen that the organisation was not living up to expectations, “says Dr Spivakovsky.

“I find that very problematic. It shouldn’t be one versus the other. You should be able to have environments where people can work safely and where people can actually enjoy their lives.”

A facility, not a home

The third academic witness, Professor Sally Robinson, explained safety strategies that could be used to improve the lives of people with disability within group homes.

A Professor of Disability and Community Inclusion at Flinders University, Professor Robinson explained the importance of preventing abuse and promoting personal safety, and how we can have high expectations for people with disability to have the same productive and positive lives as people without disability.

“One of the things that I found the saddest about this research that we’ve done was that some of the strategies that people [with disability] talked about were things like keeping a low profile, dressing in nondescript ways, crossing the road when somebody was coming towards you, being hyper vigilant about keeping the door locked all the time, a set of strategies that effectively make you less visible in the world, “explains Professor Robinson.

“And what it does, it keeps you safe from some levels of harassment but it also makes you more vulnerable to predatory abuse as well at the same time.”

Professor Robinson adds that the system is designed to recognise and respond to abuse that has already happened on an incident by incident basis, but not on recognition of more high-level harms.

“The kinds of harms that people found particularly distressing were around the things around being ignored, around their needs for care diminished or marginalised by care workers, around having their needs dismissed, particularly when they complained,” says Professor Robinson.

Commissioner Ronald Sackville suggested a multidimensional approach to replace group homes that allows the transformation to the recognition of dignity, respect and autonomy. However, he admits that will be difficult and complex to achieve.

Some of Professor Robinson’s suggestions for making residents feel safe in group homes include making sure they feel homelike.

She explained that having 30 people come through your room without you knowing who they are does not reinforce a feeling of safety.

Professor Robinson asked for fundamental system reform to stop the disability housing system from being crisis-driven, provide more life choices and options, and to allow people with disability to feel like they are actually living in a home and not a facility.

The hearings for the Disability Royal Commission will continue to the end of this week.