McGuinty gov’t re autism: Update *
Posted by Sandy on July 21st, 2008
Update: Monday, July 21, 2008
Yesterday I wrote that we could pay for autism treatments now or pay higher institutional costs later. I also talked about how difficult it must be for provincial governments to find funding, not only for children with autism, but for those suffering from other disabilities.
However, since I published that post I have thought about the issues some more. Not all disabilities are the same. For example, if a child has learning and related disabilities, they can be provided with services within the school system. While there are waiting lists there as well, it is possible to get remedial withdrawal services or placement in a special education class.
However, for children with severe autism-type symptoms, those options are not even possible UNTIL their behaviour is under control. I also re-read the arguments some advocacy sources have made on the topic of a national strategy of seamless services. And, of course the main way for that to happen would be to have our national medicare program fund these treatments (by simply using their child’s provincial health care card). For example, here is what Harold Doherty has said on the topic on his website “Facing Autism in New Brunswick.”
So, the more I have thought about it the more a national medicare funding approach makes sense. Therefore, since the autism advocacy community needs to pull together, consider me now onside.
[...]
All political parties have failed children with autism and their families to a certain extent. Mike Harris did not want to provide long-term funding for ABA intensive behaviour modification treatments, which are also called IBI therapy (meaning intensive behavioural intervention), after age six. Similarly, neither did the Dalton McGuinty government until 2005, all the while continuing their legal fight against parents every step of the way.
So, where do things stand right now? According to Maria Babbage of the Globe and Mail, “the Liberal government is failing to live up to its promises to adequately fund early therapy for autistic children, forcing some service providers to turn away families who’ve waited years for an expensive but crucial treatment.”
How can that be? Recall, Ontarians had a provincial election in October 2007 and the Liberals, under Dalton McGuinty won, another majority — a healthy majority. So, what does that say? I am not sure, but it was disappointing because voters had a clear choice. For example, John Tory committed another $75 million dollars for IBI treatments — which included school aged children. Is that a drop in the bucket or would it have helped? We will never know because the Progressive Conservatives were not elected.
But, think about it. There were approximately 89 children waiting for funding for IBI treatment when Dalton McGuinty came to power in 2003. Last year at this time, according to the Ottawa Citizen article linked to John Tory’s remarks, there were 1000. Now, we are reading that 1100 are waiting.
So, after nearly a year of the McGuinty government’s second mandate, why are the numbers increasing? Is it because there is a more frequent diagnosis of autism? Or, is it because more parents are requesting the treatment? That the numbers are increasing at an alarming rate is worrying enough but so is the fact that funding has tripled to $150 million this year from $44 million in 2003.
Now, keep in mind that it is costing the Ontario taxpayer $150 million to treat 1400 children with autism. So, if there are 1100 on the waiting list, that means that another $100 - $120 million will be needed just to reach the families that are waiting for funding for IBI treatments. See the Ontario government’s website here for further information.
In any event, that is an astounding amount of money, particularly when you realize that autism is just one disability. There are the health and learning needs of children with learning disabilities, attention deficit disorder, cystic fibrosis, MS, MD, cerebral palsy, development disability (such as Downs syndrome) and so on. What about them and their families?
While I am no fan of the Dalton McGuinty government, I can be realistic. Is it really fair to blame the politicians and the bureaucracy for this ever escalating expense and need? Is there a better way to fund the treatments? Are all these outside agencies the answer? How do we know each agency is managed well? How does the government ascertain accountability? Specifically, why do some agencies who provide IBI therapy have a deficit and others do not?
When I was a kid, there was an airline slogan: “Fly now, pay later.” Let’s change that to be “Pay now or pay later” because that is applicable here. Children with autism of varying degrees become youth and eventually reach adulthood. Research was done in the United States and Great Britain that showed that the costs are far more later — for institutionalized care — than children who can grow up to become an integral part of their communities.
So, where do I stand on this issue? Do I believe that all children with autism should be provided the IBI treatment their families think they need? Yes, in an ideal world, we would. But, do I also think that other treatment options should be funded that are not so intensive and expensive? Also yes to that because I know, given my own special and psycho- educational background, that depending on the needs of the children, other techniques can work just as well.
Lastly, do I believe that the McGuinty government is failing autistic children and their families? No I don’t. Because regardless of political party, choices have to be made. There are only so many resources to go around and they have to be shared. Because, no matter what our political affiliations, that is our collective responsibility.
H/T Cathy Cove. C/P atJack’s Newswatch.
July 20th, 2008 at 6:28 pm
[...] Continued at Crux-of-the-Matter. [...]
July 20th, 2008 at 6:42 pm
Works for me, Sandy. I didn’t know…I put up the entry so you would see it.
July 20th, 2008 at 8:54 pm
Thanks Jack. I did see your entry even before I had a chance to visit your site today — thanks to a regular reader who was more on the ball than I was. So, when I got home I wrote up the post to coincide with your entry.
You know, I am going to upset those parents who think it is their right to have never-ending IBI therapy from coast to coast to coast — paid for out of medicare because I simply don’t buy that argument. It doesn’t have to be all or nothing.
While it is true that some children benefit greatly from IBI, it is not for every child. For them, provide the therapy. But, it shouldn’t be the default therapy. Some children do better on alternative behaviour modification programs.
The problem now is we have an “autism industry.” There are huge numbers of trained IBI therapists. There are whole organizations working on this — with all the staff and technical equipment and resourses that go along with it. And, for the most part, they have only popped up in the last number of years.
In fact, I have done contract work on this issue, doing reviews of the literature and preparing proposals, so in a sense, even I have been part of that industry.
So, it is going to be VERY hard to slow things down, if not impossible.
But, I have no intention of blaming Harris, McGuinty or Harper for any lack of funding or a national strategy. All levels of government have responded but, where parents like my husband and I, had to look for other options in years past, most parents are putting all their hopes in this one therapy.
Like global warming, in the disability field, IBI or ABA, depending on whether you are talking in general terms or a specific treatment, has become an orthodoxy. Which is why there are huge debates in the autism blogosphere and I can certainly understand why.
Sorry to be so long winded.
July 21st, 2008 at 11:51 am
I think you’re right on two fronts Sandy. No gov’t will ever be able to afford the amount necessary for the needs of these families so independent and specialty organizations have to be part of those choices parents make in the treatment of their children.
A huge stumbling block that I see in the need to get this issue more profile with the policy-makers both federally and provincially is the sheer ignorance of the public on autism and the divided solutions even among parents of autistic children. As you say, there’s no right answer for all so choice based on need might be the answer.
Ironically, it’s the same answer to what’s being faced in the entire education sector if you ask me.
Oh, and in Oct. 2007 the Liberals didn’t win the election in as much as the Conservatives gave it away and lost it.
Moira Mac(Tor Sun) has a very interesting column today re: Obama and his support of charter schools….and more of them. Also, his message to parents might surprise you. To paraphrase, parents need to wise up and start parenting their kids and stop blaming teachers for everything that goes wrong in school from misbehaving to bad grades. MacDonald’s take on this is interesting of course as well.
July 21st, 2008 at 12:00 pm
And what is unfortunate is the high turnover rate with IBI workers. When I bring my sons to IBI I hear many of these young workers talking about how this job is a stepping stone to them. The government has to do more to retain these workers.