Second in a series submitted by Dr. William Cowie, Every Canadian Counts Coalition; https://everycanadiancounts.com,
The disability support system in Canada has all the features of the public, uninsured American health care system. It is costly, inefficient, unfair, inflexible, and does not meet the needs of hundreds of thousands, if not millions, of people in need of support services. Even for those who get services it is a system of ‘what you can get’ not ‘what do you need’. And who gets even those services? In the words of the Ontario Ombudsman ‘it is a crap shoot’. The situation is, unfortunately, the same across Canada.
Canada is proud of its Medicare system, a system that provides essential health services to all Canadians on an entitlement basis, with no means test. Yet no such system exists for people permanently impacted by an affliction or disability that could be ameliorated if they had timely and appropriate supports.
How did this come to happen? It has a long history but permanent disabilities, especially developmental disabilities, have always been treated separately from health initially in large part perhaps because there was no ‘cure’. People with disabilities were seen as in need of permanent care and as a consequence became part of the welfare system. The architecture around their supports was separate and distinct from health – and they were never part of the creation of Medicare – they were never part of the debate as they were generally hidden away from society and not thought of or considered.
The medical delivery system in Canada in the 1950’s was like the disability support system is today in both the US and in the contemporary Canadian service delivery system for persons with disabilities. Canadians 5 decades ago found it unacceptable – and thus emerged Medicare.
But that raises the question, ‘Why are we still here’? Why can a sick person ‘get help no questions asked’, and a person with a disability cannot? Why has this continued to be the accepted norm? The reasons are both structural and historical.
The advocacy system in Canada does not speak with one voice. It perpetuates itself through fragmented competition: fragmented in agendas (for example, employment, education, housing, accessibility, inclusion) and in advocacy where multitudinous organizations compete for limited resources. It is a system that puts out fires (crisis management at great cost) and allocates resources according to who is noisiest and/or influential. Advocates lack a singular focus while missing the essential problem – that is, the need for personalized services and supports which are adequately funded so that all the various objectives and agendas can be efficiently and effectively addressed. In short, the problem is an inadequate poorly targeted funding model.
At the same time, there is also a danger in this ‘American’ model of social service delivery. It is the danger of partial victories. As firestorms are put out (autism in Ontario) or as accessibility is prioritized federally (very visible and very expensive) those without a voice and those needing other kinds of supports become increasingly invisible to the Canadian public. In the words of one prominent surgeon in Brampton when told of the situation of supports for people with disabilities, he expressed shock. “I thought they were looked after!” was the response. No Doctor, that is not the case.
It need not be this way. We can do better. We must. Families are less able to cope. They are smaller, more scattered, and increasingly involved in looking after elderly parents. Persons with disabilities are outliving their caregivers often with no where to go. The system must change. We pay now or pay later.
In the last decade Australia has introduced a Medicare for persons with disabilities in the form of a publicly funded national disability insurance program called the NDIS. An entitlement-based program it enjoys widespread support in Australia and has transformed the lives of hundreds of thousands of Australians with a disability.
The Every Canadian Counts Coalition believes such a program is the way of the future for Canada. In the words of Sharon Scholtzberg-Grey, a founder of Canadian Medicare, “…this is some of the unfinished business of Medicare”.
The Disability Investment Group, a 2009 Report that helped lead to the founding of the NDIS in Australia stated:
“…barriers are less to do with particular impairments and more to do with the lack of guaranteed access to customized plans of timely support and development”.
Needs based and timely funding – a Medicare for persons with disabilities – is what is needed.
 Where a plan to give everyone something gave way to a few getting what they need with accompanying waiting lists thus reverting to what was before.