[FEAT BC Admin]

In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

 

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—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

Sabrina

 

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How To Fight for Funding for Autism Treatment and Appropriate School Placement

1. Establish a Paper Trail

Always take notes, documenting major points of all conversations with government and school officials.

This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

Why?

It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

In other words, they canit use discretion unfairly under the cloak of secrecy.

2. Submit all Requests in Writing

All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

3. Set Deadlines for Action

All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

Why Set Deadlines?

When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

How to icci?

A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

Who to icci to?

Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

Why send a icci copy?

The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

What is the sequence of letters?

Find out the chain of command of the particular bureaucracy you are battling.

TOP

Minister
Deputy Minister
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

BOTTOM

Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

Documentation from Experts:

In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

When to hire a lawyer?

If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

How to hire a lawyer?

The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Topic

[Andrew Kavchak]

Hi Folks,

Well, here it is… the next installment in Ontario’s “Autism Gate”.  So the government announced sweeping changes that are aimed at getting rid of the waiting list.  So instead of having only 8,000 kids with autism getting treatment, an additional 23,000 kids will be entitled now to share the resource pot to pay for treatment.  How is it then that the media in Ontario is reporting that therapists have been warned to expect lay-offs in the near future?

https://www.thespec.com/news-story/9197717-autism-therapists-warned-of-looming-layoffs-under-ford-government-overhaul/

Autism therapists concerned about impending layoffs

Given the number of kids with autism and the need for an increasing number of trained and experienced therapists, why would the government adopt a new policy that is now expected to result in therapists losing their jobs?  And if that was not enough, how about this story of a parent complaining that the Minister engaged in some deception by twisting the parent’s words…

Parent of child with autism says Lisa MacLeod ‘manipulated her words’

What is one to make of all this? Anyways, stay tuned for the next installment in Ontario’s “Autism Gate”!

 

[Andrew Kavchak]

Hi Folks,

Well, among all the political scandal and brouhaha over the SNC-Lavalin-Gate in Ottawa, particularly yesterday with the former AG’s testimony at the Justice Committee, there was one event that involved the mentioning of autism in the House of Commons:

Wed, Feb 27, 2019

“Autism Spectrum Disorder

<b>Mr. Scott Simms (Coast of Bays—Central—Notre Dame, Lib.): </b>

Mr. Speaker, I rise to present this petition on behalf of many Canadians, primarily from Ontario. I would like to initially thank Dee Gordon for her work on this and for bringing it to this House. The petition is calling for a pan-Canadian strategy on autism spectrum disorder, ASD, a pervasive disorder that affects one person in 88 in this country. It is characterized by social and communication challenges and a pattern of repetitive behaviours and interests. ASD is lifelong and certainly is of great importance to many families with young children suffering from ASD.”

Funny thing….it reminds me of how, way back around 2006, I met with Mike Lake after he was first elected as an MP.  I similarly gave him several pages of a signed petition calling for federal action on autism and asked him to table it.  He refused and gave it back to me.  I don’t think I’ve come across any reference in the transcripts of House of Commons proceedings to his tabling a petition calling for a National Autism Strategy.  Pity…

[Andrew Kavchak]

Hi Folks,

Well, I did not have to wait until tomorrow for the next installment in Ontario’s “Autism Gate”.  This episode is called “A Tale of Two Autism Societies”.  Let’s contrast how “Autism Ontario” and “Autism Canada” have reacted to the recent controversial changes announced by the Ontario government to the autism treatment program.

The Ontario government announced their program changes on February 6 and on the same day Autism Ontario issued a news release which is available here:

http://www.autismontario.com/Client/ASO/AO.nsf/object/Autism+Ontario+Responds+to+MCCSS+February+6+2019/$file/Autism+Ontario+Responds+to+MCCSS+February+6+2019.pdf

It is a news release with numerous messages which does not really reflect Autism Ontario’s position with respect to the changes, apart from saying that it will work with families and the government through the challenges.   However, there is an interesting paragraph which I reproduce here:

“The efficacy and success of our autism programming must not fall solely on the shoulders of children’s programming. To support people on the spectrum, we need a commitment across all ministries, including adult services, education, health, mental health, post-secondary, and employment sectors. Without this, families will continue to struggle for support and our society will continue to fail Autistic people and their families across their lifespan.”

When you read that, do you get the impression that they think autism is a “health” issue and should be dealt with by the Ministry of Health and Medicare?  They make a reference to “all ministries” and a reference to “health” and “mental health”, but they don’t specify that ABA treatment for autism should be available from the Health Ministry under Medicare.

Not surprisingly, the community was somewhat confused by the press release and Autism Ontario felt it necessary to issue another one on February 12 to “address” a number of “misunderstandings or assumptions”.  Having to issue a clarification to explain what you just said is often a sign of poor communication, which is often a sign of not really knowing what you want to say or how to say it.  The “Statement” of February 12 is available here:

http://www.autismontario.com/Client/ASO/AO.nsf/object/Autism+Ontario+Statement+February+12+2019/$file/Autism+Ontario+Statement+February+12+2019.pdf

The statement clarifies that Autism Ontario neither proposed nor endorsed the government’s program changes and is “concerned” about its impact on children and families.  It almost sounds like a government agency.

In contrast, Autism Canada issued a press release today (Feb 25) which is available here:

https://autismcanada.org/about-us/news-publications/

The title and subtitle are blunt and somewhat refreshing in their brutal honesty:

“Try Again, Minister MacLeod

Ontario Autism Program changes are bad policy and set the stage for crisis”

The press release offers some blunt assessments and has several recommendations, including this one:

“2) Autism should be framed as a health issue.  Autism is a complex, neuro-developmental disorder, not a learning disability nor a behavioural problem.  The needs of children with autism are also medical, not just ‘social’ or ‘educational.’  Essential health services for those with autism, which includes speech, occupational and psychological therapies, should be treated as a right, not a luxury.  Health services for autism should not be conditional and subject to the whims of each new government.”

Wow.  Bravo.  Can you believe that a Canadian “Autism Society” actually said that? I’m speechless.

[Andrew Kavchak]

Hi Folks,

Wow…there really seem to be a lot of “…gates” around the political world these days.  At the federal level, the national media have been wrapped up in “SNC-Lavalin-gate”  for a few weeks now.  Similarly in Ontario “Autism-gate” has taken on some new unprecedented proportions.

How many times have you felt, while talking to politicians and bureaucrats, that you were deliberately being misled?  How many times did you believe that you were not being told the full story and that your efforts to extract some relevant details were fruitless?  Well, the Ottawa Citizen is reporting an interesting development in the ongoing saga of Minister Lisa MacLeod’s handling of the autism file.  Keep in mind that she came to one of our rallies over a decade ago when she was in opposition and had over a decade to research and study the autism file.  Last summer her Conservative Party won the provincial election and this month she announced changes to the autism treatment program that have been extremely controversial.  And just when you thought the media coverage was exhausted and that the story would be taken off the front page, this comes up:

Documents suggest Ontario autism wait list frozen last fall, parents not told

So apparently the newspaper has copies of some internal government documents from last fall suggesting that the waiting list was “frozen” (i.e., no one on the list was called when a spot became available) and staff were instructed to keep this information from parents.  Accusations are not being made that a crisis was created (actually I think “exacerbated” is probably the more appropriate description) and there is a renewed call for the minister to be replaced.  Some people suggest that there was a “hiding of the truth” and now there is an atmosphere of “mistrust”.  Yeah….no kidding.  Unfortunately, for many people in the community who have been around the block several times, this all has a sense of “deja vu”.  Sometimes you have to admit, investigative journalism is good.  I can’t wait for tomorrow’s next installment in “autism-gate”!

[Andrew Kavchak]

Hi Folks,

Well, something interesting is brewing in Ontario.  Two weeks ago the provincial government announced a major change to the autism treatment programs (sharing the current budget of $300 million among the 8,000 current recipients and the 23,000 on the wait list so that everybody gets some funding and the waiting list is gone).  However, the announced program changes have largely been criticized by the autism community for providing families with nothing close to what is needed to cover a full scale treatment program.  Many in the community have criticized the government’s approach of giving everyone the same amount of financial help (although this is complicated by different formulas for the kids up to age six and over as well as annual maximum amounts and a family income test, etc.) and suggested instead that funding allocation should be based on the child’s needs (some more severe than others, etc.).  In the past I noticed that it was hard to mobilize the community and even harder to sustain any coordinated effort at protesting, lobbying and getting media coverage.  However, parents across the province have been successful in keeping this issue in the media and it appears that the Minister’s constituency office in Ottawa is now the site for weekly protests every Friday (whether she’s “in” or not).

As a result of all this media coverage, some stories are appearing in the media about ABA which are giving it a profile, and giving the public are getting an education that no “Autism Awareness” campaign ever did before.  Finally, I just saw an interesting Global news story comparing autism programs in different provinces across the country.

Ontario’s autism funding overhaul — here’s how it compares to the rest of Canada

I hope all this discussion will generate some serious debate among politicians and bureaucrats about what is needed and what can be done.  Clearly, there is a problem and it won’t just go away by itself.

However, among all the letters-to-the-editor in support of the autism community (most from the autism community), there are also appearing some messages from people saying “enough already”.  On one radio talk show this week I heard one high profile guest simply say that getting rid of the waiting list is a worthwhile objective and there’s no more money and it’s just too bad for the autism community.  Another letter-to-the-editor in the Ottawa Citizen today bluntly stated in a rather nasty tone that the autism community should indicate where should the current healthcare budget expenditures be cut to pay for the increased resources that are asked for.  The letter writer suggested that if the community wants the government to raise taxes, they can “forget it”.  Well, the letter-writer (a woman whom I met years ago when working in the bowels of the federal bureaucracy) missed the point about the community asking for a funding formula relating more to kids needs rather than across the board same financial handouts, but of course she also did not take into consideration that the Auditor General reports are full of stories of gross wasting of taxpayers money.  In Ontario there was a billion dollars or something like that recently spent as “penalties” for cancelling some utility contracts.  Why are taxpayers paying penalties?  Are we not penalized enough by the taxes in the first place? At the federal level, the Phoenix pay system fiasco has been apparently another billion dollar flushed down the toilet.  So the money is there.  We just need better managers who take care to minimize the risk of outrageous waste.

[Andrew Kavchak]

Hi Folks,

I just tried to post a story, but I don’t think it was successfully uploaded, so here it is again (sorry if there turns out to be a duplicate).

The situation in Ontario looks like a lot of “deja vu” to those who have been in the trenches for a while. There was an election, lots of promises, a new government, a review of the program, an announcement, no new money, twinking around the edge, and presto….new program which a lot of parents are upset about.  The media coverage about the community’s feedback is mostly negative.  There may of course be many families who are happy with the changes that were announced, but they don’t seem to be reflected in the media stories.

This is one of the reason why many parents have called on the feds to demonstrate some leadership, call the provinces to a meeting, and negotiate a funding formula and national standards as part of a “National Autism Strategy”.  So far, no one in power refers to such a term.  Here are two contrasting views.

First, on Senator Munson’s website there is a very nice video of numerous supportive Senators calling for a National Autism Strategy. Check it out at:

http://senatormunson.ca/en/by-the-senator/autism-awareness-day-at-the-senate/

In contrast, check out the transcript of a recent interview with Mike Lake at:

https://www.globalcitizen.org/en/content/why-canadian-mp-mike-lake-is-advocating-for-autism/

Note the part where he is asked what people can do to help those with disabilities.  Instead of responding with a discussion about what governments can and should do, and what individuals (including politicians like him) could lobby for in terms of public policy, he seems to completely remove the feds from the picture (see the quote below). In other words, don’t lobby him because you are “wasting your energy”.  Do I understand and interpret that correctly?

“Going off of that, what can we as global citizens do to improve the lives of people who are differently abled?

ML: Educate yourself first. I think that is really important because too often people want to debate before they have the full information and information is critical to help form credibility. Then identify the proper targets for your message. I’ve found in Canada, much like in the United States, with multiple levels of government, a lot of energy can be wasted lobbying the wrong level of government for something. So make sure you’re talking to the right people.”

[Andrew Kavchak]

Hi Folks,

Well, the Ontario government’s announcement of changes to the autism program in the province has generated a lot of media stories.  Many of the stories, including the media video of a demonstration in front of the Minister’s constituency office here in Ottawa (which included a soundbite of her shedding tears after a meeting in her office with some parents while still sticking to her announced plan), involve parents expression their frustration with the proposed plan of spreading the current resource pie among current recipients (8,000) and all those on the waiting list (23,000), so as to reduce the amount that each family can expect as assistance to pay for treatment.  In some cases, the drop is significant.  Of course, there may be some parents on the waiting list who are very happy to finally access something (better than nothing), but don’t contribute to the media stories which would reflect a positive spin on the government’s plan. So media stories may not be all that reflective of the public opinion across the community.  However, it can be said that there are many members of the community in Ontario who are upset.

To many of us who have been in the trenches for a while, this all has a sense of “deja vu”.  Election, lots of promises, new government, review of programs, o new resources, announcement, some twinking around the edges, back to square one, etc.  To many of us who have grown frustrated with the provinces doing an overall unsatisfactory job of handling the autism file (the wait list in Ottawa for the placement of an adult with autism into a group home is ten years – it is hard to call that “satisfactory”), one solution is to call for some leadership from the federal government’s Minister of Health to call a meeting of provincial Ministers and negotiate a funding formula and national standards for access to treatment, etc.  This approach is hardly new and has been done in numerous fields (the current government’s “National Housing Strategy” may be considered an example of the feds getting directly involved in a huge national problem).  Yet, for some reason, the lobbying for the past 15 years or so for a “National Autism Strategy” has largely been ignored at the federal level.  On this point, I would like to share two things with you in case you have not seen them.

First, Senator Munson’s website has a very interesting video on one page about the need for a “National Autism Strategy” which includes soundbites with a number of Senators who are clearly supportive of the idea.  Check it out at:

http://senatormunson.ca/en/by-the-senator/autism-awareness-day-at-the-senate/

Second, Mike Lake recently gave an interview about autism with a “Global Citizen” organization.  The transcript of the interview is short and available here:

https://www.globalcitizen.org/en/content/why-canadian-mp-mike-lake-is-advocating-for-autism/

Note the part towards the end where the interviewer asks Lake about what we can do to help improve the lives of those who have disabilities.  His response seems to brush the federal government totally out of the picture.

“Educate yourself first. I think that is really important because too often people want to debate before they have the full information and information is critical to help form credibility. Then identify the proper targets for your message. I’ve found in Canada, much like in the United States, with multiple levels of government, a lot of energy can be wasted lobbying the wrong level of government for something. So make sure you’re talking to the right people.”

Do I understand this response correctly?  It seems to me that instead of talking about what governments can do and what public policy initiatives people (including politicians like him) should lobby for, his response is that people should stop wasting their energy lobbying the federal government for a “National Autism Strategy”.  I guess that means that he is not the right person to talk to about this.  Strangely, I agree, but obviously for different reasons.

 

[Andrew Kavchak]

Hi Folks,

Well, the Ontario provincial government’s announcement yesterday of its changes to the programs for autism is getting a lot of media attention around here.  I listened to several radio stations that interviewed some parents for their comments and the print (or internet) media is loaded with articles.  It is at times like these when many members of the autism community speak out that one finds out a little about how other people understand and see the problems.  One thing that is clear, is the lack of clarity.  If I knew nothing about autism before, these articles and quotes would really not help much.

First, I am somewhat surprised by the media and the autism community (meaning the parents who are interviewed and quoted) not making any reference to the ABA as the treatment of choice because it is evidence-based and because numerous studies have consistently demonstrated that it is possible for a significant number of children with autism to develop to such an extent that they can function in schools at the average level.  Instead of even referring to the autism program as a “treatment” or “therapy” program, the Minister and others repeatedly refer to it as “supports”.  So we have an overall definition, conceptualization, understanding, and  characterization problem which is….not really helpful.

Second, it is interesting to note that in none of the media stories is there any mention of “Medicare for Autism Now!”.  None that I could find.  Although that was the key issue behind the Auton case that went to the Supreme Court of Canada in 2004, the autism community, at least around here, never makes any reference to it, as if it was irrelevant or never happened.  The whole role of Medicare and the lack of Medicare coverage for autism treatment is simply never brought up. I find it difficult to understand why the autism community does not even think that it is worth adding to a footnote or something.

Third, my summary description of the changes to the Ontario autism program which I provided in my previous post indicated that the Government was prepared to provide $140,000 for every child with autism up to the age of 18.  Well, it turns out that that figure only applies to kids who enter the program and a young age and as early as two.  However, for kids seven years of age or over, the figure is $55,000.

Finally, and this is really interesting…..Back in 2006 and 2007 when I organized a number of demonstrations in front of the provincial Premier’s constituency office, a couple of families came from Toronto to join us. One of the them was the family of Bruce and Laura McIntosh.  They were parents in the same boat who picked up the cudgels of protest and went on to form the “Ontario Autism Coalition”.  They lobbied the provincial government, got regular media air time whenever there was an issue that came up, and became the authoritative spokespersons for the grassroots in the autism community. On a few occasions I believe that Bruce even threw his hat in the ring to try to win a nomination to be an MPP candidate.  Well, yesterday in a previous post I mentioned that Amy Fee, the MPP Parliamentary Assistant to the Minister of Children, Community and Social Services was a mom with two kids on the spectrum.  So we had a member of the community on the inside in the political decision-making process.  However, the media articles now explain that Bruce McIntosh was a Legislative Assistant to Amy Fee….and….as a result of the government’s announcement yesterday, HE RESIGNED!!!  He calls the changes “absolutely wrongheaded” and a “huge disappointment”. So much for the pre-announcements “consultations” and doing what the community wants.  So in Ontario, what we have witnessed over the past year is that neither the long-reigning Liberals nor the newly-elected Conservatives have been able to deal with the autism file in any way that generates a lot of support in the community.  Below are some links that may be of interest.

https://www.cbc.ca/news/canada/toronto/pc-staffer-quits-over-what-he-calls-ontario-s-absolutely-wrongheaded-autism-plan-1.5008594

https://www.thestar.com/politics/provincial/2019/02/06/pc-political-staffer-and-father-of-two-autistic-teens-quits-in-anger-over-ontario-autism-overhaul.html

https://toronto.ctvnews.ca/queen-s-park-staffer-resigns-over-ford-government-s-autism-plan-1.4285584

Conservatives' autism funding plan short-sighted, parents say

 

 

[Andrew Kavchak]

Hi Folks,

Well, the “autism wars” are heating up in Ontario.  The Conservatives of Mike Harris introduced the “Preschool Autism Program” back in 1999/2000.  Some parents, most notably Brenda Deskin (who was later involved in the famous Ontario autism court case of “Deskin/Wynberg”) lobbied the government to introduce an ABA program.  Brenda Deskin compiled what became known as the “Deskin Binder” that had copies of the studies demonstrating the evidence to provide support for ABA as an “evidence-based treatment”.  Well, the program was for kids up to the age of six.  Of course there were growing pains in the program, which included a waiting list as a result of lack of resources.

Then the McGuilty Liberals got elected in 2003 and were in power until last summer (2018). Over the 15 years of the Liberals running the program, there was a lot of frustration as the government program was overwhelmed and lacked funds and had a hard time, despite all its efforts to change the program, to get rid of the waiting list.  A few years ago the government actually tried to solve the problem by lowering the cut-off age to five! Fortunately, the autism community rebelled and the government back-tracked.

So the Conservatives took over last summer with a promise to get the provinces finances “back on track” bla, bla, and Lisa MacLoed is the new Minister of Children, Community and Social Services. So recently things started to heat up.  On Monday this week, the Toronto Star published a piece by Amy Fee, who happens to be a parent of two kids on the spectrum, and who now happens to be an MPP and the Parliamentary Assistant to the Minister of Children, Community and Social Services.

https://www.thestar.com/opinion/contributors/2019/02/04/waitlist-plagued-autism-program-needs-a-rethink.html

As I mentioned in a previous post, Lisa MacLeod came to one of our rallies in front of McGuilty’s constituency’s office about 12 years ago, around the time of her first election.  Although as an opposition politician she clearly could use the file as a means to criticize the government, in the process she came to learn a lot about autism, the autism community and its needs, the government services and its strengths and weaknesses, etc.  So now, not only is the Minister someone who has had over a decade to get a real good grip on this file, the Parliamentary Assistant is a mother of two kids on the spectrum and thus a member of the community.  So we’ve got two allies in charge, right? Well…

So today, February 6, 2019, the two ladies held a press conference to announce the Conservative “revamping” of the program.  To see a video of the press conference check out the video at this link…

Ontario overhauls autism program to attempt to eliminate wait list

The principal problem they identified is that while 8,000 kids were getting treatment from a budget of $300 million (i.e., at a cost of $37,500 each), over 20,000 kids are on waitlists for “supports”.  So what are they going to do?

1. Double the funding for diagnosis (up from $3m) to rid of the waitlists for diagnosis (currently I heard it is 31 weeks).
2. The government believes that kids at different ages require different services and that any government help should be targeted to lower and middle income families. The government plans to clear the wait lists for treatment funding within 18 months by giving funding directly to families (up to $140,000 per child until they are 18 years of age), and “empower” the parents to make the best choices for their children, etc.  There will be all kinds of choice and flexibility for families, that will include: behavioural services, caregiver training, respite, technology aids, etc.
3. Because “the system” is so complex and difficult to navigate for families that already have enough problems on their plate, the government will simplify things by “empowering” Autism Ontario to “look at intake, wait lists, funding and service navigation” (whatever that means). Further, they will work with the Ministry of Health on improving oversight and preventing unethical practices, and the Ministry of Education to deal with supports, including an improvement to the website (another website again!!!), etc.

As the Minister summed it up, the government will: (1) clear the waitlist for diagnosis, (2) clear the waitlist for “supports”, and (3) empower families.

Well, it will take a while to delve into the details and digest this, but my initial reaction is to commend the desire to eliminate waitlists, but it is not clear to me yet whether there is new, additional funding, or if we are going to witness a reshuffling of the deck so that those currently being served will be getting less resources.  While a reference to $140,000 sounds like a lot, if a full-service top of the line home-based ABA program can cost over $60,000 a year, we’re talking about just over two years worth of treatment. While that may be good for some kids, I suspect it will fall short of the needs of others. On top of it all, there is no discussion of transferring the file to Health and Medicare.  Would the government take this same approach to any other health disorder?  Could you imagine the government saying to cancer patients, we’ll give you some money and empower you with a website to go find your own treatment options that are best for you, etc.?  The direct funding model is made to sound in the press conference like a new approach, but it is not.  Direct funding was an option (after the mandatory unspecified waiting period) when my son was diagnosed back in 2003.  So what’s really new here?  Sounds like a lot of old wine in a different bottle with a new label. Anyways, they claim to target clearing the waiting lists within 18 months.  It will be interesting to see how that goes.

I hope that this announcement will generate some debate in Ontario and across the country and that the debate will spill over into the federal election this year.

 

 

[Andrew Kavchak]

Hi Folks,

Well, the politics in Ottawa is kicking into high gear as the House just resumed sitting this week (the Senate will resume sitting in a few weeks) and since this is an election year, scoring points for your side while doing everything you can to make the other guys look awful, has taken on a new degree of paramountcy.  I don’t see any mention yet in the Hansard of the word “autism”, but I hope we will soon and that autism policy questions will get some attention for a change.

The government usually tables its annual budget at the end of February, so they are in the process of making important decisions now.  You may recall that last year they announced $20 million over five years for autism initiatives, including $10 million for a new website.  Well, it has been a year now, and still no website….at least, none that I can find. If anyone knows anything about the status of this mysterious ghost website, please let me know.

One development this week which may be of potential interest to some….the MP who has been referred to by a few in our community as a “tireless”, “national autism advocate” has been picked by the Conservative leader Andrew Schneer to be the “Shadow Minister for Youth, Sport and Accessibility”.  If anyone becomes aware of Mike Lake making a speech or issuing a written document in which he addresses government autism policies and says anything about what the community needs and what the government can do about it, and what he intends to do if he ever becomes the actual Minister, please let me know, because so far I can’t find anything.  I know of at least one parent in Ontario who recently sent an email to Mike Lake’s office asking for something in writing about where he stands on government autism policies and what he’s advocating for, and although the parent was offered an opportunity to speak with Mike Lake by phone (declined), nothing was forthcoming in writing and no response was given to the basic question that one would expect any politician to be prepared to answer (i.e., what do you stand for on this matter about which you are supposedly an advocate?).  Perhaps the title of “Shadow Minister” is appropriate since it appears that shedding some light may be troublesome.

[Author]

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