By Chris Ford*
Opinion - The Health and Disability System Review released last week saw a golden opportunity pass by in regards as to how it saw the future of the disability support system.
For disabled people like myself, and as a person who receives disability support funding for household management, the review failed to capture the need for a more human rights-based approach to funding support for disabled people.
The current disability support system introduced by the fourth National Government in the mid-1990s placed disability support within the ambit of the health system. They promised that the system would become more responsive to disabled people.
I remember as a young disability activist at the time this went against the consensus view of disabled people who believed it would represent a regression to the medical model of disability. Simply, the medical model holds that disabled people should be treated as people with bodily and mental deficits which needed to be addressed through treatment - rather than as people who need to have our rights upheld and requirement for individualised support respected.
As time has shown, the government's claims turned out to be but fine rhetoric.
The reality for disabled people like me is that we still have to go through bureaucratic hoops to prove to the Ministry of Health (which controls funding for non-accident related disability) that we need essential mobility equipment such as, for example, wheelchairs or housing modifications.
This having to go through hoops has been compounded by successive governments failing to increase disability support funding substantially - at least not until this year's Budget which saw the most significant boost to disability funding in decades.
While this funding increase is very welcome, the system that disabled people like myself and our families/whānau still labour under is not fit for purpose, particularly when New Zealand is a signatory to the UN Convention on the Rights of Persons with Disabilities (UNCRPD) which outlines the right of all disabled people to be citizens of the nations we live in, and the world.
Part of that notion of citizenship is that we be seen fully as people whose rights to support need to be upheld as part of ensuring that we can live inclusively within our communities. Disappointingly, and despite acknowledging problems with the current disability support system, Heather Simpson's Health and Disability Sector Review still recommends that district health boards control all disability funding.
It is this recommendation that has been rightly slammed by numerous disability organisations. While it may help address the fragmented system which sees under-65s disability support sit with the Ministry of Health and over-65s with DHBs, it still misses the central point that disabled people do not want to be subjected any more to the health system's control of our supports.
But what can be done?
I would like to see a government entity called Disability New Zealand established (replacing both the Ministry of Health DSS and ACC), whose operations and governance are be led by disabled people.
This agency would administer disability support funding and allow disabled people and their whānau to both create and hold individualised support budgets.
Moreover, an independent, autonomous Disability Commission, which would also be disabled person-led, would provide policy advice and monitor all government policy which impacted on disabled people.
We could have had all these recommendations had the Health and Disability System Review included disabled people's representation on it - something that I and other disabled people and our organisations called for constantly, including to Health Minister David Clark and Review Chair Heather Simpson.
Our views were ignored, hence the limited recommendations.
I hope the government will listen and take heed of these concerns and act to create a truly liberating disabled person and family-driven support system.
The model of such a system already exists in the Enabling Good Lives trials in the Waikato, Christchurch and Mid-Central regions which I know that Minister Clark has viewed. These trials give disabled people and their whānau control over budgets which have been pooled from various government agencies such as Health, Education and Social Development to enable them to live good lives.
It is this type of disability support system we should be aiming for, and one which is finally liberated from the oppressive yoke of the health system.
* Chris Ford is a Dunedin-based disability advocate, writer and researcher who identifies as a disabled person. He works as senior kaituitui (community networker) for Disabled Persons Assembly New Zealand, and has been an independent commentator. This article reflects his own views.