How Long are Parents Expected to be Parents?

Yesterday morning, CBC ran a piece about the frustration of a mother whose 21 year old daughter has autism. The story states that the young lady's disability is significant and that she will need a high level of support for all of her life. The mother, in spite of trying to find some sort of ongoing support system for the past three years, is painfully aware that once her daughter finishes high school this June - there will be nothing for her. It is unlikely that any services will be available anytime in the foreseeable future (CBC). This of course may change because the mother has gone public with her situation. However if all of the 21,000 people who are waiting for supports in Ontario went public tomorrow nothing would be solved. We would, in all likelihood, just become even more blasé about this issue than we are now. The sad fact is that this is not the first time such a story has reached the press and it will not be the last. Every intake worker in Ontario who works for an agency that provides supports to individuals who have a disability could provide a list of families who either are in or are about to be in crisis because of the lack of support.

I, and other people like me need to shoulder some of the blame for this situation. I don't know what we should have done differently, but we clearly lacked the ability to foresee the future.

In the early 1970s throughout much of the western world, there was a movement to close the large government institutions that housed people who had been labelled as being disabled. In Ontario these institutions had their roots in the Asylum Act of Upper Canada from the 1840s (For a detailed history of Ontario and the treatment of individuals who have a disability see Harvey Simons).  While such institutions might have been designed and run by people who thought they knew what was best, they were horrible places. I went for a tour of Huronia Regional Center as part of my training at George Brown College in 1970. We saw young people in metal cages constructed of two cribs - one place upside down on top of the bottom one and wired together. It was clear to all of the students on that tour that there had to be a better way. As I read more, it became clear to me and to many others that people who had the capacity to live in their home communities, spent their entire lives in these large institutions (see short videos MCSS). Life in those institutions was abusive, cruel and profoundly unfair.

By 1975, through a rather remarkable series of events a movement, comprised of young professionals in the community, parents (who had been the driving force of all of the early programs in the community) of young people who had been labelled, academics and civil servants within the Ministry of Community and Social Services, was created. Its goal was to close down the large institutions.  Everyone said that it would be cheaper, more effective and far more beneficial to the individuals to provide community based supports. Over the next 30 or so years, people in the community developed a rather extraordinary range of supports and services. There is no doubt that for the overwhelming majority of people who had been incarcerated in one of the government's facilities, living in the community was , by far, the better option. A year or so ago  the last institution for individuals with a developmental disability was closed. There were, in many parts of the province, loud cheers.

We were wrong about the costs. By the late 1990s, developmental service agencies were getting, on a per capita basis, more money than any other special interest group in Ontario. Developing appropriate levels of support to live and to blossom in the community requires an expensive and ongoing investment in that community. The ideology that every individual had the right to live in the community was so powerful (and so right) that we lost sight of the practical and fiscal limitations within those communities.




 We were also wrong when we assumed that the community had an infinite capacity to support individuals. Or rather we did not think about the emotional strain and financial costs we would be placing upon the parents of those special needs children.  Families, some of who are supporting children who are profoundly disabled, now have no choice but to bear the total responsibility for raising their child. To maintain the child and their parents in the community, complex support systems have been cobbled on a case by case basis. Part of that support system includes the Ministry of Education providing day programming until age 21. Somehow the professionals, the academics and the civil servants have not yet figured how to support many of those young people once they graduate from school.

We the public, on a regular basis, will continue to have access to media accounts of young people and their parents being stuck between a rock and a hard place. We will hear of families using their life savings or their retirement funds to build supports for their adult son or daughter. Parents will share their frustration over the decisions that they are forced to make including perhaps giving up their careers to look after the individual. There will be a flurry of activity, angry letters to the editor (or the modern equivalent thereof) and strong questioning in the Legislature. And this cycle will happen year after year after year. Such a cycle is unhealthy and unhelpful for the young person, their families and the community. Solutions need to be found.

I am proud of my career in the community. I am thankful that I got to participate in a movement that corrected a great injustice. It ennobles us all when our society says that those who are vulnerable and who need our support should not be warehoused in large institutions. But until we figure out collectively how we will support people without putting the primary burden of support on the parents for 30 or 40 years - the job is not finished.

We really should have thought about that 30 years ago.