Housing choice for people with disabilities
Professor Christine Bigby
This opinion piece first appeared in ON LINE Opinion on 15 April 2011.
The Productivity Commission draft report Disability Care and Support has recommended a National Disability Insurance Scheme.
If it goes ahead, the proposal for a ‘properly financed and cohesive system’ to provide ‘high quality care and support’ for people with disability will be a landmark reform of the Australian welfare state.
By replacing the current ‘underfunded, unfair, fragmented and inefficient’ disability support system, people with disabilities will have a right to support that matches their needs. As well as individual support for an estimated 360,000 people, the proposed insurance scheme sets out to champion change in attitudes and to remove the obstacles that face people with disabilities on a daily basis.
The widespread community and bipartisan support for the scheme and its self-evident advantages has limited debate.
It is important to look more closely at the detail to be assured that this major reform will do what it sets out to do and that is to make sure that people with disabilities are included in the community and are able to enjoy a quality of life that most of us take for granted.
Central to this is the type of housing that people with disabilities live in and on this issue, the Productivity Report is curiously silent.
Reflecting the campaigns of recent years, when institutions such as Kew Cottages have closed, and more recently the flagged closure of Colanda, an institution for people with intellectual disability at Colac, this silence is of grave concern.
Should there be unrestricted choice of accommodation type in the new scheme, or as with clinical interventions should choice be mediated by the evidence base of what works? Should consumers should be able to choose to use public money on accommodation choices that evidence shows obstruct rather than hamper the broader outcomes that as a society we seek for people for people with disabilities? This is the debate that we must have before it is too late.
Currently there is a real possibility that an individual or their family may choose a large cluster housing such as Norton Road in New South Wales where ten group homes were recently built side by side on one site or the Minda campus in South Australia currently being refurbished, where over 400 people with intellectual disability live together. But the design of these services are contrary to the principles of current disability legislation.
Our research has shown that while not all small group or individual living experiences are great, this is more due to poor implementation. Rationing and unmet need has led to incompatible resident groupings based on urgency of need rather than choice and compatibility.
Poor funding and organisational practices have led to staff who doubt the feasibility of inclusion for people with more severe intellectual disability, organisational cultures that undermine engagement and social inclusion, and front line workers without skilled or regular supervision.
The proposed scheme will remove one part of the equation of poor implementation.
But it cannot afford to leave the supply of accommodation services, staff and organisational practices to consumer choice or the market alone.
The scheme must regulate the type of accommodation service that can be purchased to those with the potential to facilitate required outcomes. It must also ensure ongoing rigorous independent monitoring of individual people against benchmarks of social inclusion and quality of life.
People with severe intellectual disability have limited bargaining power, many cannot self report, and do not always have resourceful family members or advocates alongside them. For this group, the benchmark of quality is not care alone or staff doing things for people but ‘active support’ to be engaged in their own everyday lives and to facilitate convivial social encounters.
Choices offered by the new scheme must be services or support that will best support the outcomes society seeks for people with disabilities – these are not large segregated clustered housing.
The scheme must reflect the principles of the National Disability Strategy, 2010- 2010 and United Nations Convention on the Rights of Persons with Disabilities. Such principles place choice alongside maximum opportunities for independence and participation in the life of the community.
If the new scheme does not prohibit large-scale cluster services, there is a very real danger that the myth will be perpetuated that some people are too disabled to live in the community.
Professor Christine Bigby, Social Work and Social Policy, La Trobe University