Autism advocates in Canada have been working to develop a so-called "National Autism Strategy". The latest has been announced by the Autism Society of Canada as part of the Canadian Autism Spectrum Disorders Alliance. Another pillar of this strategy lies in bill C-360, which will not pass the House of Commons. The bill is designed to ensure ABA and IBI are considered "medically necessary" as part of medicare and thus must be funded in each province. In 2007, the Senate of Canada produced a report on autism services in Canada, making a number of recommendations.
Notwithstanding the issue of adult supports for people with autism (post-education period), most efforts tend to go into school-age or younger children with autism. I will not comment on adult supports since I am not well informed of the issues, beyond anecdotal evidence from parents claiming that they are terribly inadequate.
In Canada, education and medical care are constitutionally controlled by the provinces. Some provinces welcome money from the federal government with strings attached, but some do not (notably Quebec and Alberta). The only way for the federal government to directly help families affected by autism is through the federal spending power, which basically means giving money directly to parents, or giving money to other levels of government but only if the rules set out by the federal government are met.
Without going into all of the politics, this is very difficult given the current configuration of parliament. There is also the issue of singling out autism spectrum disorders as deserving of money but ignoring other disabilities. This is defensible in that the costs of IBI/ABA treatments are high, but then, not all parents with children who have autism use these methods or agree with them.
I am not going to say "no" to more support to families impacted with autism. But attempting to force standards on treatment and detection (medical responsibility) or educational standards on the provinces will not work well. The best we can hope for is more money in the system, hopefully more directed to parents to use as they see fit.
I agree!
ReplyDeleteFor instance a the money spent on the regional programs in-house IBI programs are used by many families who are not setting up home programs or opting for DFO - but a lot of families will never use these regional in-house programs - becuase they think they are bad, obsolute and poorly managed.
The "consultative" model of Speech therapy and occupational therapy from surrey place in toronto is woefully inadequate and extremely mismanaged. But does that mean they should be terminated - what should the toronto government do to replace them?
YOu should check out the big screen tv's in surrey place -seriously, that place used to be a dump- so much money has gone in to making it what it is today - but is it serving the needs of the people?
I too think more money to parents is a good idea, however will all the thousands of people who own the regional programs agree to this? Its too political and we could spend years trying to eliminate these "middle men" from the equation AND who will regulate the private sector if they go private?
Right now the private sector where a lot people are turning to are completely not regulated, everyone is doing whatever they want, charging what they want - and some of them are almost equal to child abuse.
This precise thing that you noted in your blog post - that what treatment plan should people agree to for children and adults with autism??? That is the big question mark. This problem is unique to autism spectrum disorders.
Some people want money for speech therapy, OT, some want it for ABA, some for RDI, some for biomedical - I think the solution that may work is the BC type system where you get the money and you do what you want with it and the government should reform the school boards' special needs system.