Saturday, April 23, 2011

The Trouble With Advocacy

For those of you outside Canada:  We are presently in a federal election.  It's our fourth in seven years.  Elections always remind me of advocacy because they tend to be the time politicians suddenly become interested in what you might have to say.

Autism advocacy is tricky business.  There are many interest groups and all of them have a different spin.  There are very few advocacy groups with whom I completely agree.  Most active autism advocacy groups are pushed by parents, a group of people who are already lacking in both time and money, since kids on the spectrum tend to suck both away from us.  Let's examine a few well known autism groups and see where the chips fall.

I struggle a lot with Autism Speaks.  They are the largest advocacy organization in North America and tend to compete with local charities for dollars.  My biggest two issues with Autism Speaks are (1) their huge focus on research, and (2) their tendency to pay their staff ridiculous compensation (go to page 9).  Research is important but not to the detriment of advocating and supporting families struggling with autism, including programming and providing materials.  This seems to be left to local autism societies, many of whom struggle with financing.  If people ask me if they should give to Autism Speaks, I tell them they are better off giving their money to their local autism society, such as Autism Ontario here in Ontario. 

Medicare for Autism Now is an organization based in British Columbia that has been particularly active in trying to knock off Conservative candidates in the Canadian federal election.  Their claim is that children with autism are being discriminated against because treatment is not covered under Canada's universal health care system.  Their solution is to amend the Canada Health Act to include specific coverage for IBI and ABA therapy.  I have several problems with this:  (1) Not everyone accepts ABA as a treatment for autism they want (I happen to believe it is the best treatment but recognize not everyone agrees), (2) It is discriminatory to make ABA treatment funded but not so many other things like speech therapy or physiotherapy, (3) Putting this requirement in the Canada Health Act will not improve any services because it does nothing to make waiting lists shorter, which is the primary problem many parents have in accessing this treatment.  True, amending the Canada Health Act will put ABA therapy in the hands of some parents in provinces that do not provide it, but interestingly, the most vocal parents tend to live in Ontario and B.C., which already have comprehensive ABA coverage.  In the B.C. case, amending the Canada Health Act will not change a thing - $25,000 per year per child under 6 years old would be considered meeting that directive by a court.

Let's discuss the fairness.  As a parent of a child with autism, I understand the financial cost of treatment.  It's $50,000-70,000 per year to treat it with intensive ABA, and people cannot afford this.  We need help.  But there are other disorders, perhaps not as common, such as speech apraxia, that may need intensive treatment for success.  Speech language pathologists are not cheap.  What about a debilitating condition requiring physiotherapy?  What about people with no drug coverage for cancer or other conditions?  The reality is that Canada does not have a universal health care system, it has a partial health care system mainly concerned with keeping people alive, not about quality of life.  The only way to make this fair is to cover all para-medical professionals plus dentists and drug coverage.  In an age where 40-50% of provincial budgets are going to health already, do you really think this is going to happen?  I admire this group's goal but it's both unfair and unrealistic in this parent's view.

Autism Resolution Ontario is an advocacy group that advocates for timely access to ABA services in Ontario.  I am generally in agreement with this group (and indeed am part of it) but I have one major issue in that it advocates for redirecting all autism funding to IBI.  I strongly disagree with this for two reasons:  (1) While IBI works for some kids, it does not work for all kids.  It is unfair to withdraw supports, however meagre they may be, from children who do not respond to this treatment.  (2)  Support for summer camps is huge for the school age population and is one of the few things parents can obtain help with when children are this age.  It should not be withdrawn either.  Laurel Broten, the Minister for Children and Youth in Ontario has said this before and I tend to agree with her, even if I think the budget for the IBI program is terribly inadequate.

The Ontario Autism Coalition has been around for several years and was instrumental in opposing Ontario's age six cut-off years ago.  While inactive until recently, it is operating with renewed vigour as a provincial election looms.  Besides the medicare for ABA funding argument, there is little about this organization I find questionable and so far I have admired their advocacy efforts.

1 comment:

  1. Fantastic post AutistiWisdom. I couldn't agree more with you about all these.