April 16, 2021

The Inclusion Agenda: Getting to the Starting Line: #1 and #2 of a series (Cowie)

By Dr William Cowie

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^[1]) 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.

^[1] 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.

_________________________________________________________________________________________________________________

First of a four part series (submitted by Dr. William Cowie, Every Canadian Counts Coalition https://everycanadiancounts.com,)

The YouTube posting is highly illustrative. A Secondary School teacher is on the football playing field at the 30-yard line and faces his students standing on one goal line. In a race to win $100 they are to run to the other goal line. The class is mixed, boys and girls, Whites and Latinos and Blacks and they are all on the starting goal line together. But it is not the starting line for the race. The teacher says before the race begins, “If your parents are still together, take 2 steps forward”. This is followed by, “If you have had private tutoring take two steps forward”. And then, “If you have never had to worry about your cell phone being cut off take two steps forward”. It goes on. The race is never won but the lesson is learned. It is a lesson about who and who has not had support in their young lives, and the advantage it affords them.

But there was one group missing in this video. There was no one identified with a disability. “If you have mobility issues take two steps back”. For many they would be behind the goal line at the outset.

Filling the two (or more) steps back gap that persons with disabilities face is the purpose of building specialized institutional, logistical, technical and therapeutic supports. They help to ensure that persons with disabilities are able to engage in the game of life more equitably. At a minimum it is about getting to the starting line and from there advancing beyond it. Such support services are a pre-requisite for engaging in the race to be the best of one’s ability – be this the race to get a job and earn a decent income, to find housing, to partake in social and cultural events. When quality supports are available where and when needed all these engagements become easier. And until such services are available to all who need them, the other pervasive condition of persons with disabilities – poverty, high rates of unemployment, isolation and discrimination – will never be resolved.

Fortunately, one jurisdiction in the world has recognized this. Australia, with is National Disability Insurance Scheme (NDIS), funds a program that provides essential supports for persons with chronic disabilities throughout their lifetime. With this as the starting line, income, employment, education, and other services not only are better leveraged though this support, but meaningfully help address the issue of chronic poverty, homelessness, isolation among the community of persons with disabilities because any income earned does not have to be spent on support services.

The importance of providing essential supports first and foremost can be seen in the average cost associated with the NDIS. The average cost of supports for persons with disabilities was estimated and confirmed to be in the order of $35,000. This is before any income effect. In other words, an income program, guaranteed or otherwise serves little anti poverty purpose if the income needs to be spent on essential supports. But there are other issues associated with an income versus essential supports public policy approach to persons with disabilities as well.

First is the public acceptability of an income versus a disability insurance approach to providing services for the disabled. Providing income for persons with disabilities, while not providing it to others who may be struggling (unemployed, displaced, and the very low paid generally) creates a ‘special interest’ which can result in resentment and would be subject to political attack. A universal insurance program on the other hand has a much greater change of public acceptance because it can apply to anyone – and hence to all. Similarly, as an insurance that everyone pays into it lends itself to becoming an accepted part of the social safety net (like Medicare and CPP) and can be seen to be filling a real need.

Secondly, the funding of such a support program would stimulate targeted innovation, and be less like ‘stimulus’ finding. Canada has been a pioneer in many assistive devices that currently have no demand curve in Canada, leaving companies to market their innovations overseas.

Third, making disability insurance a target of public policy provides the unifying focus that has recently been called for among leaders in the disability community^[1]. It addresses a common theme and concern – and one that never seems to be addressed specifically – chronic underfunding of disability support services.

Fourth, there is the employment effect of the NDIS. In the roll out of the program in 2018 and 2019 it was the biggest single new employer in Australia, with notable employment effects in remote and small communities.

Finally, there is the societal effect. It has transformed Australian society in a way that makes them proud to be Australian. From a laggard in disability support services in the OECD it has turned into a world leader in terms of what can – and should – be done.

It is time to get everyone in Canada to the goal line. It is time to end the poverty, the strain, the inequity, the unnecessary injustice. It is time to make what we know as possible by way of ensuring effective support, i.e. through the mechanism of a national universal and entitlement-based disability insurance program, a reality.

For more information on what can be done visit the Every Canadian Counts Coalition website at www.everycandiancounts.com.

^[1] Al Edmanksi and Kathleen O’Grady “It’s time to unify the disability movement” August 4, 2020 Globe and Mail, Every Canadian Counts, “Disability Advocacy in Canada: A Community Divided”