By Menachem Leifer, The Montreal Gazette
In Quebec lately, we keep hearing dire warnings about the “fiscal deficit.” We are told that urgent action is required to address it. Yet a much more pressing deficit exists in our province, one that hardly ever makes the news. It is the deficit in vital care that we extend to the most innocent and vulnerable of our citizens – our special-needs children.
A story concerning the matter did appear a few weeks ago in this newspaper (“Donation should help clear autism diagnosis wait,” Sept. 23). The fact that the story was exceptional, in the sense of being so rare, made it all the more worthy of close attention.
The story reported a donation from the Jean Coutu Foundation in the amount of $5 million. The money will help clear the waiting lists for children with possible autism or developmental delays who require diagnoses of their disorders. The recipient of the donation, the Miriam Foundation, will use the endowment to diagnose some 500 children a year at no cost to their parents. The report went on to say:
“At present, about 800 children wait 12 to 24 months for a diagnosis at a Montreal hospital or other clinics. There is then another wait, up to two years in many cases, for appropriate treatment.”
The CEO of the Miriam Foundation hailed the donation as “a real breakthrough.” He was absolutely correct to describe it that way. The gift responds to a pressing need and represents a superb gesture. Likewise, the Miriam’s part in this story is entirely praiseworthy; it will support the diagnosis process for the next four years. Thereafter, Quebec’s network of public services will assume responsibility.
It takes nothing away from the good that has been done to point out that we are still left with a sad irony. What will all these parents do with a diagnosis if they cannot follow it with treatment?
Imagine for a moment the predicament of parents who have waited to learn the nature of the challenge their children face, and who then must wait several years in many cases for the professional help they need. Furthermore, in many instances, children are kept waiting so long that when they finally reach the head of the line, they are no longer eligible for treatment because they are too old!
The situation is not only intolerable, and not only a disgrace to our health-care system, it is also counterproductive in terms of expense. All experience indicates that delays in bringing help to special-needs children ultimately cost society much more in the long run.
The obstacles confronting Quebec parents do not end with waiting lists. While services have improved for autistic children, given the tremendous publicity surrounding this veritable epidemic, many other special-needs kids receive only limited and fragmented help. Often times they will receive an hour of speech therapy in one location, an hour of physiotherapy elsewhere, and so on. Again, less than what is required, much less than what is possible and ultimately inefficient in terms of cost.
There is no disputing that developmentally challenged children, whether they be autistic, born with Down syndrome or otherwise genetically afflicted, require early, intensive, comprehensive intervention in order to thrive. The earlier the child receives therapy, the more likely he or she will be able to achieve full potential, which means leading a functional, productive and fulfilling life. Almost any disadvantaged child treated as a dynamic being is capable of profound changes. I have seen the proof of it time and again over the span of nearly two decades while working with these children. The positive effects of therapies that are focused, one-on-one and fully integrated cannot be overstated. It is precisely the customized approach of Intensive Early Intervention, which treats the whole individual and not just the affliction, that is critical to development – and that often saves the child from a life of long-term care.
My purpose here is to illustrate what can be done for our kids and, more important, what works for both them and society. A model for success exists in various jurisdictions, where governments partner with private organizations to integrate resources, pare down bureaucracy and optimize care. We can do the same in Quebec. Surely no sphere of activity cries out more meaningfully for this kind of public-private partnership.
As a parent, my argument is not simply for the government to spend additional money, but to spend the same money differently. It’s simply a fact that public service agencies need not fear competition. So what impels them to do a better job? Why should they make more effective use of their budgets? Where is the impetus to strive?
We argue that if parents can, with the blessing and financial backing of the government, choose private services, the outcomes will be far superior. I have no doubt that if competition to treat disadvantaged children becomes the norm, all waiting lists in Quebec will very rapidly disappear.
At present, given all the wait lists and shortage of services, parents pay huge sums of money to give their kids a chance at life, and private organizations overextend themselves in order to help support them, as well. Just imagine what could be accomplished if we could combine all those efforts with some funding from the government that would follow children wherever their parents choose to send them. What could be a better incentive for all these institutions to strive to do their best for these families?
We do not have to look beyond our own borders for inspiration in this regard. The public-private partnership model that we envision for Early Intervention already exists in the school system in Quebec. Parents who have a child with special needs can apply to their respective school boards, which then in turn are able to partner with private schools in the public interest. Why are we able to do this when the sector is education, but not when it is rehabilitation or family services? The question is a critical one, and the right answer to it can transform many lives for the better.
Too many parents in Quebec continue to suffer the torment of protracted delay, and too many of our precious children are being denied the opportunity to achieve their potential. The generosity of The Marcelle & Jean Coutu Foundation should serve as a wake-up call to those who are truly responsible for the health and well-being of our youth. Is it not time for our government officials to embrace proven best practices and take the necessary steps to solve this crisis?
Menachem Leifer is founder and executive director of The Donald Berman Yaldei Developmental Center, and father of two developmentally delayed children.