The proposed National Disability Insurance Scheme (NDIS) has the potential to radically change the lives of people with severe intellectual disabilities.
But despite the NDIS’ guarantee to match support with need, its success will depend on the type and quality of support and disability services available for purchase.
What’s more, while choice and inclusion are central to the scheme, they’re problematic for people with severe intellectual disabilities.
Inclusion has been elusive despite thirty years of deinstitutionalisation policies and exercising choice is often difficult because of limited knowledge of options and difficulty in comprehending abstract concepts.
So, it’s often left to family members or others close to the person to make their choices. Similarly, other people represent the interests of those with intellectual disabilities to policy makers.
As a result, disability policy has largely been driven by ideology or advocacy from families whose actions are informed by their personal experiences.
And unlike other areas of social policy, research has figured little in policy debate.
Lack of evidence?
Research evidence was considered scarce and limited in scope by the 2009 report of the Disability Investment Group, which recommended more research in this area and better dissemination of it.
But the evidence we do have suggests that some choices have better outcomes than others. For instance, certain service designs for supported accommodation foster inclusion while others obstruct it.
Evidence from recent studies of the closure of Kew Cottages in Victoria, echoes three decades of research overseas. It shows how significant improvements in quality of life occur when people move from institutions to small-scale supported accommodation in the community.
Research has also demonstrated that community inclusion is feasible for all people, even the most severely disabled.
But there’s enormous variability and closing institutions doesn’t guarantee against the re-emergence of “institutional” practices or ensure improved outcomes.
The culture of some group homes, for instance, is staff rather than client centred. This means staff “do things for” rather than “with” residents.
They focus on housework, personal care and community presence rather than actively supporting engagement and participation.
Indeed, in some services, social distance such as that found in institutions is evident, with staff regarding people with intellectual disability as “not like us” and being sceptical about possibilities of social inclusion.
In poorer services, now as in the past, people with more severe intellectual disability receive less staff support and have worse outcomes than their more able peers.
Despite this variability, outcomes for residents in the best group homes always exceeds that of the best institutions.
So living in ordinary houses of one to six residents dispersed in the community with adequate staff is necessary – but not sufficient – for good outcomes and social inclusion.
These conclusions are reinforced by a few robust studies of clustered housing – where small living units are grouped together on a single site separate from the local community.
This research finds “dispersed housing is superior to cluster housing on the majority of quality indicators”.
Cluster housing has particularly poor outcomes in terms of social inclusion, self determination, material well being, personal development and rights – all of which are key to current disability policy aspirations.
So, families and policy makers should move on from debates about design and focus on other necessary conditions for quality-of-life outcomes, such as good staff practices that support engagement and community participation.
These are very different from the self-directed attendant care, which are suitable for people with physical rather than cognitive disabilities.
The importance of inclusion
Supporting people with intellectual disabilities – no matter how severe or what other problems they have – to live among the rest of us in small ordinary houses dispersed in the community is important for two reasons.
First, it’s better for the people concerned. In well-organised community services, people can lead lives that are richer, more varied and more stimulating.
They can experience more independence, more choice and more contact with family, friends and neighbours.
Living within the community also offers the best protection for disabled people and their families in the long run.
If we separate people with intellectual disability in clusters of housing away from the community – even with noble motives – community attitudes will not change, and may even become less accepting over time.
People with intellectual disabilities living in the community are more visible, more included and connected, and their rights are better protected.
Professor Christine Bigby will be addressing a seminar organised by Advocacy group Fighting Chance Supported Accommodation Models for People with Disabilities: The past, the present - and the future? in Sydney today. Call 0433 777 109 for more information