Exceptional Needs, the community and the Government Part 2

A day or so ago I did a bit about the questions that were raised (in my mind) as I read three separate and seeming unrelated articles. All three articles had to do with the lack of supports for people who have unique needs. There is no doubt there is a sufficient level of expertise within our communities to develop the range of support programs that are needed to support all individuals who face special challenges. "However at some point someone needs to ask the question: should we do it? And if the answer is yes, then the second question needs to be why".

When in the early 1970s, at a variety of centres in Canada, people started to have a serious conversation about closing institutions and supporting everyone in the community, there were a number of assumptions made. One assumption was that it would be cheaper in the long run to close down the large facilities and to support those individuals in their home communities; a second was that those communities had the capacity to provide those supports and a third was that the individuals who were repatriated back to the community would have significantly better lives.  Those assumptions were made with no documentation, no scientific proof, no research. The truth was so self-evident that there was virtually no debate allowed. People who disagreed with the concept of de-institutionalization were at best just wrong and at worst discrimitory, uncaring and possibly dangerous people. I don't remember anyone asking the question if there was a limit in terms of costs or the communities' capacities.  The only "proof" anyone had that de-institutionalization was a good thing were the anecdotal stories told by a number of people as they travelled from conference to conference, training session to training session.

What is perhaps more concerning is that to the best of my knowledge - no one is yet questioning those assumptions.  I think professionals are too afraid to ask the question: is the amount of money and support available from the public purse bottomless? Is there a limit to how much we are willing to spend? Governments, of course, know the answer which is why they continually tweak the system trying to find ways of delivering ever more complex support systems with less money. Of course no minister of the government or senior civil servant will say "there is no more money - we can't help anymore".

While I recognize that the deeper the pot is, the more likely it is that people will demand even more supports and services - I think the pot should be near bottomless. I find it absurd that we live in a country where on one hand we give legal acknowledgement to the rights of all people and then do little to ensure that some of those people have the skills and the opportunities to access those rights. We give lip service to the concept that the community can and should support all of its citizens but have continually refused to fund those communities to an adequate level. We ask more of parents, schools and others than we ever have before - but available resources never match the need.

If our governments are unable to provide sufficient fund to ensure that parents are not forced to sell their home to provide supportive accommodation for their son or that people who live with mental health problems don't develop more problems because of the lack of appropriate and available programs or that those who want to and have the capacity to excel in post secondary can't - then the government should say so. And they should say why.

Those who continually argue that we are paying too much tax need to be part of the conversation. They need to sit across from the table with those parents or that young person who can't get support and say " we don't want to pay for it anymore". It is time we stopped blaming the faceless bureaucrats and the elected politicians for the inadequacy of services. Maybe it is time we ask the question we should have asked  over 40 years ago: how much are you willing to pay to support everyone in your community?

Exceptional Needs, the Community and the Government Part 1

In the past few days I have read three articles. Individually each article was reasonably well written but did not contain new information. None of the articles kept my attention for any longer than it took me to read it. However when read in combination with each other, the articles once again raised a question that Canadians need to address.

CBC reported on a mother and father who are planning on selling their home and then buying a townhouse so that their adult son who faces a number of challenges can have a place to live. The family hope that they can find a roommate who also needs some support so that they can create some sort of "group home" for their son when they are no longer able to support him. They are rightly frustrated that the provincial ministry cannot provide the level of support their son requires.

The second article was from the Globe and Mail who suggested that Canada's mental health system is underfunded - in fact the amount the Canadian government spends on mental health programs is near the bottom of a list of OECD countries. The argument made was that we need to do much better at supporting those who live with a mental health problem. The mental health system hopes that in the next round of health negotiations between the province and the federal government that mental health funding will be a priority.

The third article is in the September edition of the Walrus. It was an article written by a mother whose son has a learning disability and who had been struggling to get all of the needed accommodations to support him that had been agreed to by his university. The writer/mother while recognizing that there may be conflicts between supporting those with special needs within a post-secondary setting and universities maintaining it academic standards was also frustrated at how her son was treated.

All three of the issues presented by the articles could at least in part be resolved with more money. A lot more money. There is no doubt that Canada could afford to spend more than it does on providing a supports to members of the community. There is also no doubt that there is a sufficient level of expertise within those communities to develop the range of support programs that are needed. However at some point someone needs to ask the question: should we do it? And if the answer is yes, then the second question needs to be why.

My heart goes out to that family who are prepared to make (as they have done for the past 27 years) all kinds of life changes to ensure that their son has the best possible choices as he gets older. But the problem of not finding adequate or appropriate service is not a new problem. I can think of a number of families who struggled with that problem twenty years ago. Some of them explored exactly the same option as this family are doing. In the intervening years, the various governments have frequently increased the budgets of community based agencies. Community based programs in the last two or three decades have expanded both in terms their complexities and their comprehensiveness. I suspect that this family are frustrated by not only the lack of supports but also by the fact that it feels as if they have been lied to. When government operated facilities for children and adults who face challenges were closed - parents and the community were promised that there would be sufficient supports in the community. We promised fully integrated schools where young people of all levels of ability would socialize and learn together. We promised (because we believed it to be true) that there would be a range of supports available as the individual grew and as their needs changed.  We promised that the communities would be able to provide the opportunity for all individuals to maximize their potential. Those who made those promises, made those commitments were wrong.

They were wrong - not because the belief that everyone had the absolute right to be treated with dignity, and that everyone had the right to be given the chance to grow was misguided or wrong - but because we never explained (or even understood) what we were asking the community to do.

It is well past time for someone to do so.

to be continued.......................