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Wednesday, April 2, 2008

Time overdue to put autism on the national agenda

Medicare for the twenty-first century

Today - April 2nd - is World Autism Day. The Geneva Centre for Autism in Canada estimates that one in every 169 children is on the autistic spectrum. The Centre for Disease Control in the U.S. estimates that the ratio is one in every 150 children and one in every 94 boys. Almost everyone knows someone who is afflicted with autistic spectrum disorder (ASD). ASD presents an enormous challenge to our society in the 21st century.

Yet too many Canadian politicians appear unable to articulate and support clear national action in this area. In the U.S., Hillary Clinton, Barack Obama and John McCain have all taken articulate progressive positions regarding autism and supported federal legislation – the Combating Autism Bill – which allocated $945 million to autism treatment and research. Today CNN will devote an entire day of broadcasting to the challenge.

What do we have here in Canada? We have a timid prime minister and his acolytes responding to the demand that there be equitable national access to medical treatment for autism by saying that the issue only engages provincial jurisdiction and is not of national concern.

What have we come to in Canada when our national leadership is unable to rise above petty politics and power plays, unable to govern in the national interest in this as in too many other areas, most notably, the environment?

Fortunately, individual Canadians are filling in the vacuum and promoting change from below. One British Columbia-based group – Medicare for Autism Now – has been busy building up an effective political lobby and a national coalition to convince our national politicians to support universal access to the necessary medical services across Canada. This is a multi-partisan coalition of frustrated but determined Canadians who are tired and cynical about having to fight for equity and justice in the national interest in a country that is supposed to be one of the best in the world.

It is now beyond debate that the most effective type of autism treatment is Applied Behavioral Analysis (ABA) – something which involves intensive one-on-one assistance to parents and their ASD child at the earliest possible age. ABA is an enormously valuable and justifiable investment in a huge and growing number of young persons who have a great deal to contribute to society and who need not be a heavy burden on the health care system as they grow older.

Provinces do try to meet the needs of ASD children, but in a haphazard ad hoc way generally through social services mainly for respite and support, not medical treatment. And much depends on the uneven ability of parents to access the necessary funding and services available. Only Alberta has complied with a court order requiring the province to fully fund the appropriate medical treatment for autism - ABA intervention - through the health care system.

Effective autism treatment of course impacts both health care and education. We need not only the investment in people to provide the services through the health care system – ABA specialists, speech therapists, child psychologists etc – but also the investment in the people needed to provide the services in the education system, notably one-on-one teachers’ assistants.

To manage the increase in the number of ASD children entering the school system, schools need many new teachers’ assistants to permit the class teacher to teach the whole class while enabling the ASD child to stay on task, focused and listening to the best of their ability, and to develop social skills during recesses, lunchtimes and so forth. To its credit, Ontario does provide parents with certain limited ongoing funds for Special Services at Home (SSAH) to assist with children on the autistic spectrum and which can be spent on ABA-type intervention. Perhaps one interim measure might be to permit parents to redirect this support to a school to fund a teacher’s assistant during a child’s school years.

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

The time is long overdue to establish, at the national level, the services and medical treatments that 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 claim that there is a constitutional barrier to such a step. 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. (See the analysis in the early 2008 publication of the Canadian Health Services Research Foundation by Colleen Flood, Mark Stabile, and Carolyn Tuohy - "Defining the Medicare Basket.")

The real issue is the lack of 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. To begin with, we should implement an independent institutional mechanism to deal with issues of fiscal federalism and fiscal balance, and thereby ensure rational cooperative action. This is a far better alternative to ill-considered politicized steps serving some short-term objective – witness the Harper 2007 Budget which included confused and confusing multiple equalization formulas and a massive transfer to the provinces to eliminate a mythical fiscal imbalance, which then (unsurprisingly) reemerged a short time later.

There are precedents for such a mechanism in other federations. Australia has a Commonwealth Grants Commission which deals with both horizontal and vertical transfers between the federal government and the states, and facilitates cooperative equitable outcomes. South Africa has a similar Financial and Fiscal Commission.

At the same time, we should establish an arms-length national health commission, overseen by a non-partisan board of outstanding citizens, to tackle 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.

If we have, as we do, a national body – the Common Drug Review (CDR) – that makes recommendations to provincial governments as to which drugs should be covered by all provincial drug plans, then we most certainly should be able to find the political will to cooperate and establish something analogous such as the national commission suggested above, to ensure the provision of essential medical treatments and health care services across Canada.

The Commission would also examine levels of health care funding as a percentage of GDP and propose changes to ensure that health care does not swamp our federal and provincial government budgets to the detriment of the environment, education and emergency preparedness. Already health care budgets consume 40% of all provincial spending and 10.6% of GDP (compared to 33% in 1993, and 7% of GDP in the 1970s and 8.9% in 1997). For example, informed observers are concerned about the excessively large component of health care expenditures absorbed by pharmaceutical research and development. A medical journal published a study a few years ago that suggested that some $4 billion dollars currently spent on pharmaceutical R & D could be freed up for more productive use in the health care system. How many variations of cold and cough medicines and pain killers do we really need? It is confusing to enter a drugstore these days for certain items and in the case of some children’s medications and pain killers, the number of recalls and reviews in recent years have been significant.

One final note: the campaign to establish national standards for autism services also illustrates the broader need to ensure that our health care system serves the patients, not the other way around. Just as parents of ASD children are insisting on more case-sensitive human intervention, some hospitals are successfully experimenting with patient advocates whose job is to help the individual to deal with the array of options and possibilities for treatment available following a complex diagnosis such as cancer.

1 comment:

Wascally705wabbit said...

I just unsuccessfully tried to post a comment that unfortunately blogger "ate".
In summary, I agree with your synopsis - much needs to be done.
I thought Dalton McGuinty's government - through Marie Bountrogianni - was going to make good inroads into solutions - but really only started down the path - underfunded - and to a degree lacking in focus.
[Example - FEAT is pushing for IBI treatments - but many parents feel that IBI is less effective for THEIR kids than other less well studied programs.]