Getting to the Front of the Line

Most of us (Canadians) get through life with relatively few life crises. Most of us, except at birth and at death do not use a lot of government funded services - or at least that is our perception of ourselves. Therefore, when we or a family member need a special service, we act as if it is our right to have exactly what we need when we need it. If it is not immediately available, we act as if our rights have been in some way violated. This sense of entitlement allows us to ignore the expense of the service, the fact that the demand for services is constantly expanding (if not always in the right direction) or that money is a finite resource.

Take for example the most recent protest in Ontario complaining about the government's plan to support families with young children who have been diagnosed with autism. For well over 20 years ago programs designed around Applied Behavioural Analysis, or ABA have had a waiting list. Parents have consistently complained that their children were not getting access to the programs until it was too late. These can be very expensive programs, sometimes costing $60,000 to $80,000 a year per child. Families have gone into debt to privately fund these programs. Parents have also complained that sometimes the bureaucracy can be cumbersome and that perhaps if families could administer the funds (as opposed to going through an agency), the program would be more efficient. The Ontario government could have done nothing. They instead, clearly not understanding the issue, decided to address two of the problems - get rid of the 23,000 person waiting list by giving every family some money and then let at least some families administer their own programs.

Of course, without adding to the budget - these changes just meant that more people were getting access to the same amount of money. The consequences are that no one is getting enough money to effectively help their children. Clearly, this is an issue for the families and for the systems that support these families. There is nowhere for these parents to go to get assistance - their resources will be drained and so will the resources of hospitals, schools and the court systems.

Whereas 40-50 years ago some of these children would have been institutionalized and others would have left school when they were 12 -14 - perhaps to have been employed in menial jobs - there are no more institutions nor are there very many jobs that do not, at the very least, required high school graduation. By creating a society that attempts to be more open, that attempts to include more people in our communities we have created a society that becomes responsible for all individuals.

It would have cost between 12 and 18 million dollars, this year, to support all of the young children in Ontario labelled as being autistic. Next year it would have cost more, the year after that - even more. There is no limit to the potential growth to this program. I do not disagree that the community must be responsible for supporting all families - I spent 30 plus years supporting and arguing on behalf of individuals who had been institutionalized, shunned, ignored and hidden away but we need to have a discussion about what it costs and how we are going to pay for it.

There are a thousand other programs that need better funding. All of those programs are vital to the people directly impacted by the lack of that specific service. We all can't all be a priority, we all can't be at the top of the list for new services or for increased funding. Somehow we need to collectively decide how we decide who is a priority.

The present way of advocating for increased support requires people to make their needs more important than anyone else's. That is not the way to build better communities