What About the Kids?

by Sue Ferguson

Politicians are failing children, especially those with special needs. IMAGINE THE STRESSES of raising an autistic child. In the most severe cases of autism, children shut out the world around them, behave in ritualistic ways and communicate through shrieks and screams.

Now imagine taking on the added financial and personal strain of launching a legal battle against a school board and/or provincial education officials. Yet that’s what hundreds of Canadian parents feel they must do. At any given time in this country, there are more than 100 lawsuits in the courts filed by parents of autistic children.

For the most part, the suits aim to force provinces to offer, through the school system, a variety of intensive therapies that have proven highly successful in helping kids with autism, a spectrum of neurological disorders with symptoms ranging from social aloofness to profound exile from the world. The lawsuits, based on the Charter, contend that all children have an equal right to education, and that special therapy is essential to an autistic child’s ability to learn. Yet school boards have usually insisted such treatment is beyond their mandate: autism therapy, they stress, falls under the purview of the health care system. Governments also contend that current treatments are most effective with infants and toddlers (however, studies reveal an impressive track record with school-age kids as well). One case, a B.C. court decision requiring that province to provide therapy for 23 autistic children, is currently before the Supreme Court of Canada.

But an unusual Toronto-area case is shifting the terrain of legal debate by taking the battle into a child-welfare court. In midsummer, the Durham Children’s Aid Society applied to renew a court order allowing it to monitor two autistic brothers, aged 7 and 9. The stressed-out parents, social workers suspected, were exposing the boys to harmful and abusive arguments. However, the couple turned the tables and replied to the CAS application by arguing the school board and the government of Ontario are guilty of neglect by failing to provide a suitable program. In a landmark ruling this month, Superior Court Justice David Salmers allowed the case to proceed to trial. If his decision survives an appeal, it will be the first time that a Canadian school board is the subject of a child-welfare hearing — and it will mean that schools deemed neglectful or abusive could, like parents, come under the watch of child-welfare agencies. In the past, says the parents’ lawyer, Jeffery Wilson, “child welfare law stopped at the doorsteps of the school. Education was seen as somebody else’s bailiwick.”

The plaintiffs in the Charter and child-welfare cases share the same goal: they want schools and, by extension, the government to provide their children with the optimal learning environment. But the Durham case recasts the terms of debate. Rather than an abstract principle of equality, the practical and pressing question of what’s in a child’s best interest will guide the judge’s decision. Although it arises out of anomalous circumstances and Wilson doesn’t expect the trial’s outcome to affect the constitutional challenges now in process, the Durham case clearly sets out the dilemma at the heart of all these challenges: who is responsible for ensuring that a child’s needs are met? It also, sadly, points to how far we are from any resolution to that question.

North Americans have long been ambivalent about kids: we have plenty of public programs geared to various aspects of their development, but we’re reluctant to commit to an overall vision. The patchwork of child-care policies across the country, and the 20-year dickering over a national program, are prime indicators of our ambivalence. So is the fact that, in the case of autistic children, school boards are only too ready to pass the buck — even though schools have long been about more than mere education. Breakfast and after-school programs, visiting public-health professionals, extracurricular activities and, of course, special education itself, all testify to the broad social-welfare role schools already play.

Never, in fact, is the adage “it takes a village to raise a child” more true than in the case of special-needs kids. And it’s no coincidence that these cases come at a time when inclusion (to use the term du jour for integration) is increasingly promoted and applauded. The Autism Society of Canada, the Canadian Association for Community Living and the Canadian Mental Health Association all uphold inclusion as an educational and social policy. A spate of research indicating that children generally — though not universally — fare worse socially and academically when they’re segregated into special-education classes has helped push boards across the country to open regular classrooms to students with disabilities. (Of course, the commitment is far from fully played out, and in practice, it’s the physically disabled who benefit the most, with 85 per cent fully included in regular classrooms compared to only 40 per cent of students with intellectual disabilities.)

Still, the change in mindset from a generation ago — when the mentally disabled were deemed “defectives” and regularly sent to live, and be schooled, in large, impersonal provincial facilities — is remarkable. In fact, last month Ontario’s ministry of community and social services announced plans to close the province’s three remaining regional centres for the developmentally disabled by 2009 (13 have been shut since the late 1980s). “We will complete a long-standing journey from an institution-based service system for people with developmental disabilities to a community-based system that promotes inclusion, independence and choice,” proclaimed minister Sandra Pupatello as she committed up to $110 million over the next four years for group homes and other measures to support the 1,000 residents making the transition to life in and among the general populace. Ontario joins B.C. and Newfoundland in closing the book on segregated living, and some other provinces intend to follow suit.

The parents of autistic children, then, are simply in sync with the times when they seek help shouldering a responsibility that can be overwhelming on the best of days. And public schools, whether they like it or not, are our modern-day village squares, certainly for parents of school-aged kids. They are the daily point of contact for parents with each other, as well as with other concerned adults who have more than a passing acquaintance with their kids.

Of course, resource-strapped schools need funding to take on an expanded mandate. They claim, with justification, that they can’t afford to deliver the 20-plus hours a week needed for effective autism therapy, which usually involves repetition and rewards. Some provinces are making amends: Nova Scotia hired 52 new resource teachers in 2003, and Ontario recently committed $250 million for special education — essential but inadequate steps to restoring budgets that were slashed in the 1990s.

But funding alone isn’t enough. If we’re to take our collective responsibility for children’s welfare seriously, we need to demand that governments do something they seem loath to do: take some initiative. That’s the only way to avoid the haphazard approach schools now have to special education and other programs. A truly coordinated children’s services system that looks out for youngsters’ best interests in health, education and welfare could be run most effectively within the school system.

That’s why asking who’s responsible, as the Durham case does, is so compelling. The trouble is, courts are hardly a forum for coming to a collective, village-style resolution. They tend to pit the responsible adults involved against each other, and to encourage precisely the pass-the-buck mentality that’s at the core of the dilemma. If governments showed some political will, parents wouldn’t be backed into using the courts, and the terrain could be established for a rational, timely approach to ensuring every kid’s needs are met. Then, perhaps, all those parents currently in court would have a little more time and energy for the kids.

Reprinted with the permission of Maclean’s