Limits to choice for consumers with disabilities

The Productivity Commission draft report Disability Care and Support has recommended a National Disability Insurance Scheme. The proposal for a 'properly financed and cohesive system' to provide 'high quality care and support' for people with disability would be a landmark reform of the Australian welfare state. By replacing the current 'underfunded, unfair, fragmented and inefficient' disability support system, an estimated 360,000 people with disabilities would have a right to support that matches their needs. The proposed insurance scheme also sets out to champion change in attitudes and to remove the obstacles that face people with disabilities on a daily basis. The report heralds a major reform in disability support services that should be applauded.

The widespread community and bipartisan support for the scheme and its self evident advantages have limited debate. The devil is always in the detail. It is important to look more closely 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.

Consumer choice is central to the new scheme. It would be limited only by assessed need and evidence of best clinical practice. The Productivity Report is however curiously silent on the type of accommodation that could be chosen and would be funded. 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. It is a real possibility that an individual or their family may choose 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 currently being refurbished, where over 400 people with intellectual disability live together. The design of these services is contrary to the principles of current disability legislation. Research evidence demonstrates individual or small group living is a prerequisite to social inclusion.

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 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 with disabilities.

Our research has shown that not all small group or individual living has good outcomes but international studies show the best small group homes far exceed that of large scale segregated options. Variable outcomes in group homes are due to poor implementation. Rationing and unmet need has led to things such as 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. 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. Better still it must separate housing from support, so type or place of housing is not restricted by the degree of support a person requires. The scheme must also ensure ongoing rigorous independent monitoring of individual outcomes against benchmarks of social inclusion and quality of life. These must be finely tuned for different consumer groups. People with severe intellectual disability will be a significant group in the new scheme. They 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. There is a danger that if the new scheme does not prohibit large scale cluster services, some choices will undermine opportunities for social inclusion and the myth will be perpetuated that some people are too disabled to live in the community.