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 http://www.medicareforautismnow.blogspot.com – 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.

On Harper and immigration

Harper and immigration: divisive policy by stealth. Petty politics and power plays trump vision and principle

The immigration system needs an overhaul. But what it doesn't need is poorly conceived, divisive tinkering by an election-hungry prime minister, slipped stealthily into his budget.

Immigrants built Canada and are the backbone of, and enrich, Canadian society. The federal government must vastly improve the process of applying to immigrate to Canada and, once and for all, facilitate the recognition of foreign educational credentials and foreign work experience, while recognizing that both skilled and unskilled workers have invaluable contributions to make.

An immigration system that generates a backlog of 850,000 applications, with many in the queue for 5 or 6 years, is a dysfunctional nightmare and an embarrassment to a country like Canada which increasingly depends on our interconnectedness with the rest of the world. Indeed by as early as 2012, immigration will account for all net labour force growth.

The solution does not lie in the Harper government's ill-considered proposal to give the immigration minister sweeping powers to pick and choose different types of immigrants and establish arbitrary caps on categories of applicants. Nor does it lie only in ad hoc, albeit laudable, steps such as creating a new category of "Canadian Experience Class" which allows temporary workers and foreign students to apply for landed status without first returning to their home countries.

The proper route is to undertake a serious and complete overhaul of the immigration and refugee protection system and take the time necessary to get it right.

To begin with, we need to speed up the immigration application process by hiring more staff in all our offices abroad and ensure that enough individual attention is given to potential immigrants to ease their arrival in Canada and maximize their chance of successful integration. But staffing up to adequate levels will only work if we have adequate capacity within Canada to integrate new Canadians once they arrive. We must provide the necessary infrastructure, especially individualized human assistance, to help new Canadians maximize their potential - language training, settlement services, internship programs that provide work experience, expeditious certification mechanisms to recognize foreign credentials and work experience.

Given the massive backlog, it may be advisable to establish a new system for processing all new applicants as of a certain date, this time sufficiently staffed in all areas, while creating specialized teams over the short-term to attack and eliminate the backlog in an equitable and very expeditious manner. This will require a significant and long overdue investment of public funds at both the federal and provincial levels, something that is infinitely preferable to the introduction of extraordinarily arbitrary ministerial powers.

Ensuring the efficient and equitable operation of our immigration system will relieve the pressures on the refugee determination process which arise when would-be immigrants attempt to circumvent the clogged and frustrating immigration stream by making unfounded refugee claims. To some extent, our refugee protection system has functioned as an overflow mechanism for the immigration system, and this has unfortunately fuelled much exaggerated claims that our good will and humanitarianism are being abused.

But minimizing unfounded refugee claims is neither the only nor the most serious reform that merits our attention. While we should be proud of Canada’s record in assisting refugees fleeing persecution in their country of nationality, our refugee determination process too often gives rise to incomprehensible situations in which a deportation offends our standard of basic fairness and compassion, in addition to defying common sense. This situation must be corrected at the earliest opportunity.

Among other things the current refugee determination structure and process should be changed as follows:

- The members of the refugee board should comprise experts in the field, appointed by an arms-length commission, who decide both whether a person falls within the legal definition of a refugee or whether, in any event, the person should nevertheless stay in Canada on humane and compassionate grounds. (Currently there are two separate, costly and time-consuming proceedings).

- The board must be adequately staffed so that backlogs do not build up. Equally, our overseas offices must be adequately staffed to allow much greater processing of refugees in transit points and hot spots around the world.

- There should be an appeal to a quasi-judicial Refugee Appeal Division.

All persons who have been welcomed within our borders as immigrants, refugees, or people meriting humanitarian and compassionate relief, become eligible for Canadian citizenship. As part of the process of applying Canadian citizenship, we must also promote the responsibilities that go along with the rights of citizenship. In gaining the rights of Canadian citizenship, all persons must accept the responsibility to maintain a civil society and a political community that espouses democratic ideals and acts on them, upholds the rule of law and outlaws the use of violence as a means of political expression. As well, all persons must accept the responsibility to maintain a civil society and political community in which women have equal rights and privileges with men.

At the same time, all Canadians must discharge our serious collective responsibility to ensure that new Canadians have real equality of opportunity. The evidence is clear that the latest wave of immigrants, while perhaps better educated than their predecessors, face more difficulties with respect to employment, reuniting their families, proper housing and health services. The huge mismatch between the skills of new Canadians and what they are actually employed to do here is astonishing. It seems that newcomers are now seen as a source of low-income workers, not as a solution to the much-needed upgrading of skills in both the manufacturing and knowledge sectors, and as much-needed new professionals.

No less than 41% of immigrants with university degrees are now in chronic low-income categories, compared to only 13% in 1993, before the immigration laws were changed to encourage more educated immigrants to come to Canada. Especially among the young there is a real sense of exclusion as the disaffected lash out against a society that fails to give them equal opportunity in practice. Canadians, particularly employers in Canada, must identify what barriers are preventing many new Canadians from advancing their careers, and then address those barriers with positive action. According to a 2007 report of the Conference Board of Canada, "although Canadian organizations say they value diversity, they have not yet fully committed their policies, practices and resources to embedding diversity in their operations."

We clearly require much more public investment in education and training, sector by sector, so that we stop shedding so many valuable middle-income jobs that traditionally have allowed workers to climb the income ladder, and so we can really focus on keeping people employed. Wouldn't dramatic national action be great for a change? Like offering free employee training to employers who locate or expand their operations in Canada? For that matter, why not the Irish route of free college tuition?

But this takes us to another area of discussion, to be addressed at another time.