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Wednesday, April 1, 2009

Putting Autism on the National Agenda: Medicare for the 21st Century

Today (April 2nd) is World Autism Day. Almost all of us know someone who is afflicted with autistic spectrum disorder (ASD). The Geneva Centre for Autism in Canada estimates that 1 in every 169 children is on the autistic spectrum. ASD presents an enormous challenge to our society in the 21st century.

Access to effective autism treatment such as Applied Behavioural Analysis (ABA) is very restricted across provinces, and little is available under Medicare with the notable exception of Alberta. Most provinces provide services for ASD children in a haphazard way generally through social services and mainly for respite and support, not medical treatment (although Ontario, for example, does provide some funds that can be used at home for ABA-type intervention).

Firm national action and leadership is required to provide effective autism treatment to all Canadians who need it, and ensure that the huge and growing numbers of children with ASD are able to contribute to society to the best of their abilities and do not become a heavy burden on the health care system as they grow older. Yet the current federal government refuses to take action to ensure equitable national access to medical treatment for autism on the grounds that it is not of national concern and is only a provincial matter. In contrast President Obama speaks eloquently on the national interest in dealing with autism and is a supporter of federal legislation – the Combating Autism Act – which allocates $945 million to autism treatment and research.

Surely Canadian history teaches us the importance of national initiatives that strengthen our social fabric and advance justice and equality. Surely we have learned that the measure of a great society and nation is how well we collectively take care of disadvantaged Canadians. Preserving the dignity of our neighbour preserves the dignity of us all. When we all contribute to and share the benefits of, for example, good health care, we are all better off.

Unfortunately our current national leadership ignores this important legacy, preferring minimalist national government (despite being forced into a temporary stimulus package), adhocery, divisive policies and rhetoric, and no vision. The few Canadians who voted in the depressing election last fall did so with little enthusiasm or sense of national pride.

We desperately need to put some energy and passion back into national politics, and demand bold and visionary leadership from our national politicians. So it is extremely refreshing to see the emergence of a strong grassroots network of parents and many others from all provinces and territories, who have set aside the all-too-prevalent cynicism, and have joined together to demand national action and to vigorously campaign for changes to Medicare to assure equitable access to autism treatment across Canada (See: National Autism Strategy/Medicare for Autism).

I view this national campaign for universal access to effective autism treatment as part of a much needed larger national debate – revamping Medicare for the twenty-first century.

Medicare has become less and less a national program and symbol drawing us together, and more and more an uneven patchwork of medically-required services across provinces, with tragic consequences as in the case of cancer pathology in Newfoundland and elsewhere. The time is long overdue to establish, at the national level, the services and medical treatments, as well as the associated national standards, which should be available to all Canadians under Medicare. Canadians in all provinces must have equal access to, for example, extensive services for autistic children, physiotherapy, adequate cancer treatment, or MRIs.

The Harper government is wrong to refuse to address the issue. At the very least, Medicare funding decisions must be made in a coherent fashion in a national framework given that we invest no less than $160 billion annually, of which $113 billion is from the public purse. But more importantly, there is a clear national interest and concern in preserving and updating our national health care system – an essential pillar of a strong 21st century nation, and a significant Canadian achievement to which the Americans now aspire.

We should establish a high profile arms-length national health commission (building on the existing National Health Council), with a clear mandate to develop a consensus and advise governments in a persuasive and public way on a whole range of issues such as:
• national standards in terms of coverage,
• how to ensure that Canadians do not have to leave the country for essential medical treatments or take governments to court to pay for essential medications or treatments,
• what is the acceptable degree of private delivery of publicly insured health services,
• how to ensure the portability of Medicare across the country.

We must also find the political will and determination among our elected representatives to bring coherence, consistency and accountability to the current mess of federal-provincial financial transfers, of which health care is a significant component. Regrettably we can no longer measure how well the myriad of federal contributions to the provinces, including equalization, helps to ensure comparable public services across Canada. No amount of tinkering with the arcane equalization formula, or ad hoc adjustments to transfers for health, education and social services, will fix this fundamental problem, especially in the purely partisan and divisive way pursued by the prime minister to date.

We need a permanent non-partisan advisory commission (similar to Australia) to take charge and establish a system of federal contributions to provinces that is much more transparent and subject to public scrutiny. Through such a commission, decisions relating to federal-provincial fiscal relations and transfers to provinces to support national programs and objectives, are much more likely to be based on intelligent debate and to contribute to the national interest in building stronger ties among Canadians rather than weakening them.

World Autism Day provides us with a good occasion to reflect on how far we have come and how far we have yet to go in building a fair and compassionate society, and discharging our collective responsibility for those less fortunate than ourselves.

1 comment:

rockfish said...

thanks for writing this. Let's keep pushing and talking about it and not leave it only to those who face the heavy struggle on a daily basis.