Sunday, October 18, 2009

Malcolm Stanley on Autism Treatment: US (Pennsylvania) Trumps Canada (Ontario)

Malcolm Stanley is the father of an autistic child, and a Canadian autism advocate who moved from Ontario to Pennsylvania for economic and business reasons. In an article in the Toronto Star, U.S. can teach us how to care for autistic kids he has compared and contrasted the autism intervention services available for autistic children in Pennsylvania with those available in Ontario. And Ontario comes out on the short end of the stick. Malcolm is a parent autism advocate who is very well informed by family experience and by his involvement in autism advocacy. He knows what he is talking about.

The only criticism I have with his opinion piece is that he generalizes his experience in Pennsylvania to that of the United States as a whole and similarly generalizes from Ontario to all of Canada. From what I have read the situation he has described in Pennsylvania of full autism intervention service provision does not exist in most American states. Canada is in fact a patchwork of autism service provision varying greatly from province to province as Malcolm describes but Ontario, Canada's largest province, and a leader in many areas, has been anything but a leader in provision of autism services.

Despite the above mild criticism Malcolm's comments hit home, Canada which offers government provided medical services, sees fit to exclude autism treatment from the list of medical services provided. Our Supreme Court of Canada, in Auton, ruled that it was OK for government to exclude autism treatment from medical service coverage. The Court effectively ruled that there is no substantive right to medical treatment in Canada and that what medical treatments are provided is a matter for governments to decide.

Malcolm Stanley's comment should be read by all with a serious interest in treating and helping persons with autism disorders overcome their disorders or at least improve to the maximum extent possible. Hopefully someday the federal government, and provincial governments like Ontario, will listen to Malcolm Stanley and the other parents, family members and caregivers who actually care and start providing funded applied behavior analysis for autistic children and adults.

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MJ said...

You are correct that Pennsylvania has better services available that the rest of the US. And then even still the level of services depends on exactly where in PA you live - the western area around Pittsburgh has excellent services, the eastern side by Philadelphia has good services, but the middle of the state has relatively poor services.

The rest of the US is no different- some areas have good services while the others have either poor services or none at all. The coverage is spotty at best.

Yet availability of these services is supposed to be one of the reasons that we are lining up to have our kids diagnosed with autism. Go figure.

Autism Mom Rising said...

Great points. Pennsylvania, where my sister used to be a behavior specialist, has much better Autism services, than, say, my state. PA, NJ, Wisconsin, and CA (before their budget crunch) are among the best here.

That really creeps me out what you said about the ruling where the govt. effectively said that a person has a right to medical care only if the govt. thinks they need it (did I get this right?) Here we have the insurance companies playing that role. Here's a novel idea: how about letting the doctors (and credentialed Naturopaths, Acupuncturists),etc decide what medical care a person needs?!

farmwifetwo said...

I read a US article that said that Canadians are being forced to put their autistic kids into institutions. Forwarded it to my MP too.

Sorry... Yankees know little about us... even those that have moved.

As one that lives in Ontario and RURAL at that... and a child on either end of the spectrum... I have no complaints about the level of service being provided in this province.

We received in home IBI services (took less than 6mths to get in), we could have continued with "transition to school and at home" but we and the school asked them to leave (personal choice, but it is available). We received early intervention speech services and that took less than 3mths to get but it was a 30min drive or they and OT services came to the public daycare where ODSP/ACSD pd for them to go/respite 2 days/wk. AND little boys 1:1 worker after age 3.

There are self contained autistic, behavioural, slow learners classrooms if you wish to have your child in one. They can be integrated too. There is PPM 140 ABA in the classroom - and my youngest gets 1:1 support with an EA, in a regular classroom. He gets OT, SLP and Autistic services in the regular classroom.

Then again, I know the system and make a point of getting us what is owed to us. I know that under the IPRC's the Board and Province MUST purchase all materials - we have cushions, ball chairs, keyboards, computers, fidgit toys, computer programs etc etc.. and they are only in Gr 3 and 5. Not bad for the 2nd most SW school in the board pretty much as far away from the board office (over an hr away) you can get....

If you don't ask, if you don't go through the process, if you think you are owed instead of realizing you have to work to get it... you don't get... PERIOD. AND, I don't sympathise either.

The school has learned to no longer tell me "what about those other parents" b/c the answer was.. I don't give a sh*t... unless they go through the process.

Strategic Thinking and Execution said...

Hey Harold,

in fact I did have paragraphs in the original draft spelling out just what you have said about the uneven nature of the patchwork quilt in the US and the fact that Ontario is far from leadership in Canada. Both points are entirely true.

The challenge I faced was that the article had a fairly firm word limit and I had to chop a bunch of stuff out to meet that criteria. SO I made what amounted to a marketing decision to sacrifice some precision of detail in service of the larger messages I was trying to deliver.

Given that the majority of the audience for the article is seeing this as an introduction to a new topic, I felt a high level description would be enough for now. The detail can come quickly after for those wishing to get up to speed.

If it is any comfort, I was thinking of you when I made the cut, as I knew that you and others in our community would pick up on what I left out. You have not disappointed me, and for that I am happy to be corrected.

Your point about Auton was much on my mind as well. I think many Americans believe we have many rights wrt health care which we do not; it may in fact be true that US Citizens have more actual 'rights' than Canadians when it comes to health care, as a simple outcome of the fact that things get arranged that way here. I think such a point, if true, would shock most people on both sides of the border.

Thanks for reposting my effort, and for your kind words in my support. Meant a lot to me to be able to contribute. I hope you find the contribution ultimately helpful.

Barry Hudson said...

With all due respect farmwifetwo I do not know what part of Ontario you are in but it must be a better world than any metropolitan centre.

Our son was on the IBI wait list for 34 months, 11 days, 8 hours, 3 minutes and 27 seconds, for the wait period we self funded our son’s therapy and IBI works for him very well. For SLP we had to wait out 18 months, 2 days, 4 hours, 9 minutes, 15 seconds. Going to school has been ok (we work with the school and this has been beneficial) but the board told us there is no 1 on 1 aid and never will be – the board has won all court challenges and with the strength of the Wynberg decision boards can essentially tell parents to take a leap. PPM 140 is not being applied equally, nor entirely effectively, by all boards – for board effectiveness the results are more random than consistent.

Residential placement (in southern Ontario) has a 13 year wait list (last time I checked – two weeks ago). Should my wife and I die in a car accident the “emergency” residences are the same ones that house juvenile sexual offenders (I checked this out and have seen some of the facilities, I would not want my worse enemy to have to stay one night), not what I call a great place for a nonverbal individual. I recall you posted once that “I should have a life too” in regards to residential placements for your children so I recommend you get them on the wait list now but I also recall you posted before that a community living organization wrote, in a newsletter to you, that residential placement = jail since they are not funded well enough. Tell me what CL org this is and I will call them, I would like to use their newsletter at my advocacy meetings with the mandarins.

I know the system, have advocated very strongly, testified at committee hearings (for autism issues) at Queen’s Park, and know most in the system by first name basis. The waitlists do not change because of advocacy. Service funding is cut for (for the 97 cases I have seen) reasons more baffling than clinical, consistency between regional centres does not exist. I doubt your MP will care about your email since the Feds have stated that the issue is one of provincial jurisdiction – stop calling (I summarize the federal governments response to the Senate report Pay Now of Pay Later [2007]) and this is what I was told my Mr. Lake, the MP effective spokesperson for the feds on autism when we spoke at great length last year.

The Auditor General of Ontario has issued two reports on the lengthy delays in providing autism services and the one report on the failure of substantially all school boards to properly provide special education services (you can search for the reports on the Auditor’s web site). I went to the committee hearings and the Deputy Minister of Education was taking great credit for Ontario now being able to teach the hard of sight and hearing – an 19th century achievement finally realized in Ontario in the 21st century! If this goes to speak of success I would hate to hear their definition of failure.

The bottom line here is that ASD individuals have no rights under the law, and are clearly not valued as human beings in our society – this is the difference in law between us and the US I think the article was targeting. It is good you know how to advocate but this does not change the wait times at least of the 263 cases I know of – they all had the same wait time as my son (some are still waiting). New cases coming on now are sent letters that waitlists for ANY funding can be 24 to 48 months.

farmwifetwo said...

Ohhh, a Toronto person.

If you don't like the process... become part of it.

We have.

Barry Hudson said...

farmwifetwo - you must be Conservative – you know the party mantra: keep saying the same thing and maybe it will become believable (sorry, had to trade some form of acceptable insult since I entirely fail to see what being from Toronto has to so with anything, btw though I work here I grew up in rural Nova Scotia, a small strip of the #7 highway – village population 13, but I guess that could make things worse).

I also do not understand how my advocacy for my son (which is a daily event), testifying at Queen’s Park, and being involved in the community can be ascribed as not part of the process. My wife and I created our son’s programs, trained our school, and brought organizations together for my son’s benefit that never did before in the history of Confederation (e.g.: our son will age out of OT therapy but by giving the provincial funded OT worker permission to go to my son’s school and having the school agree to this without disruption to the vaulted union contract is one example of about 93 “new” things we have accomplished as part of the process). My wife and I wrote our son’s IEP, meet with the school a minimum of once a month, communicate daily with the school via a communication binder and we sit on the school parent council – is there some other processes I am unaware of? Enlighten me and I will include these in our support of our son. My wife and I also give our son therapy ourselves to support generalization. When we signed our funding contract it says we have to give 5 hours or our own time for therapy my first thought was “what, cut back from the 20 we already do” (this on top of his daily therapy). Our self funding was done willingly – there is absolutely nothing I would not sacrifice for my son, I mean really, bricks, sticks, and currency are a poor replacement for the value of a human being.

I read your earlier post in regards to residential placement and where you say “I deserve a life too” I say my “son deserves a life too”, my place as a parent (taught to me by my parents) is to place the children above my needs. I applaud your powers of advocacy and success for your children but where do you want to leave the single mother minimum wage earner with nonverbal behaviourally challenged ASD five year old twins (like a lady I know who’s husband passed away when their twins were two)? That you do not give a “sh..” about such people makes me pity you. The new processes we have created are also being made available to others on the spectrum, my being part of the process is not just for myself or my son, I am glad that I have been able to help others.

Your argument still does not defeat the facts of the waitlist in Ontario, the protection of those that deliver therapy over the rights of those that receive it, and the inconsistency of PPM 140 – all facts from the Auditor General and respective ministries themselves. I know (from personal experience) Conservatives are not big on facts being used but the facts I note can be validated by any independent 3rd party – none of this is spin or any attempt to dissuade medieval ideal acceptance that survival of the fittest is a valid concept in a “just society”. Quite simply – this is the truth.

You still haven’t told me which CL org sent the newsletter, your Conservative pals here say that can’t be true and they expect great support from CL in the next election.

Strategic Thinking and Execution said...

See, this makes me so sad.

As I wrote in my article, in Pennsylvania, as a result of legislation, we have specific rights. One of those rights is a right to due process. Due process is essentially the part of the social contract that describes what you do when things go wrong.

you can see an example of due process procedures here: this the web site
of the Office of Dispute Resolution representing the Pennsylvania Department of Education

I blogged once about a very well written decision that ensued from a due process case :"It appears that the District was attempting to fit the student into a program, placement and curriculum that already existed in the District, rather than tailoring a program and placement to the student's capabilities and limitations, as the law requires.

This conclusion is further apparent in the District's assertion that it cannot be expected to create a program for a single student. This is exactly what is required by IDEA- an individualized program.

This does not mean a separate class or room, but a set of coordinated services and interventions, delivered by persons capable of providing them, in the least restrictive environment. The District appears to equate "autistic support" with a class. Autistic support is a service category, not a classroom. Autistic support can be provided in any classroom by competent professionals. It does not require the aggregation of autistic students in a room. In this case, once the Student experienced lack of meaningful progress or downright failure, the District blamed the Student, maintaining that the Student presented with disabilities that were foreign to the students in the District, that the District personnel were not trained to work with this Student, that the Student missed too much school, that the Student did not gain much from associating with typical peers, and so on and so forth. In fact, the District failed to create a program to meet the Student's needs, failed to train its staff adequately and failed to implement the parts of the program that could have been appropriate."

I bring this up because in the American system, where individual rights are recognized, due process is an essential mechanism for resolving disputes of the type we are witnessing between us here, by making it clear that responsibility lies with government for the consistent provision of services to Autism children.

It is expressly not the parents fault if things are not as they should be.

In Canada we are all subjects of the Crown. As Harold notes, services are provided at the whimsy of the Crown. There are no rights, really, so no requirement to due process to protect them.

In such an environment there is great encouragement for all individuals to perpetuate the cycle of violence against themselves, following the example of the Crown. I think in this conversation we are witnessing this human tendency to mimic authority, often to personal or collective detriment.

A much more difficult but productive tack would be to work together to break that cycle of violence by directing energy to the election of officials who will enact legislation enabling appropriate services and supporting due process. Doing so would allow us to stop blaming the victim, parents and children who are dissatisfied with services received or withheld, and start blaming the ultimate provider of services, Government, for failing to adequately prioritize and value this task, which is important in and of itself, apart from any comparison to other tasks and priorities the government may hold.