[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,

There is a public provincial broadcaster in Ontario with a channel called “TVO”.  One of the weekday evening programs is called “The Agenda”. Its regular host, Steve Paikin, is a competent journalist, and the interviews with interesting people about current events is often quite informative and thought-provoking.  Except when they discuss autism.  Over the years they’ve had a number of programs with panels of supposedly informed people talking about the latest thing, and each time I get a feeling of disappointment. The program just tweeted out a recent 30 minute panel on the autism program changes in Ontario, and the panel included Mike Lake (the MP from Alberta).

https://twitter.com/TheAgenda/status/1156716221254868992

Besides Lake, the panel included a Toronto Star “education beat” journalist and a deputy director at the Ontario Autism Coalition.  It was a struggle to watch the thing and I had to speed up some parts because I just could not stand the wasted opportunities to say something meaningful in response to questions.

The first thing I noticed is that none of the panelists mentioned that autism treatment is medically necessary and should be the primary responsibility of the Ministry of Health and covered by Medicare (OHIP in Ontario).

The questions from the moderator (someone replacing Steve Paikin over the summer) were easy softballs.  Nonetheless, they provided opportunities to say something meaningful, if you wanted to. I listened to everything Mike Lake had to say and there basically two things to note from his messaging. First, the Conservative election platform will contain a commitment to a National Autism Strategy.  He mentioned that the NDP already made such a commitment and he suggested that the Liberals will likely have such a commitment to one as well (frankly, that would be a surprise, I mean a real NAS with helpful substance, and not just another website).

Second, he is unwilling (and perhaps incapable for whatever reason) of actually saying anything with regard to what the provincial or federal government should do with respect to autism public policy apart from one thing: listen to the experts.  He kept repeating that all the time.  The Ontario provincial government has an Advisory Panel which is expected to make recommendations on how to “get it right” and make it “sustainable” bla, bla, and he repeated that there are great experts on the panel who will give great advice and the government will take the advice, etc.  Well, he’s been an MP for 13 years and all he can say now about what governments should do is “listen to the experts”. At one point he began to list all the names of high profile people in the autism “industry” that he knows (as if that made him an expert or something).  Although he praised the expertise on the Ontario Advisory Panel over and over, he did not mention that it contains two “self-advocates”, one of which previously posted some rather offensive messages on social media about ABA, etc.  And what expertise does that guy have in autism treatment or healthcare program administration?

So what do you think the Conservative election platform is going to contain?  Based on what Mike Lake was repeating over and over during this program, it sounds like it will be a commitment to appoint a consultative advisory expert panel of stakeholders to come up with some recommendations on what the government should do.  This is actually very similar to the NDP election platform which does not actually say what the National Autism Strategy would consist of, but makes it clear that an NDP government is committed to consultations.  Well, we’ve been telling the governments for years that in 2004 the SCC said it was up to the legislatures to determine whether to end the healthcare discrimination against kids with autism and we would like them to act on putting and end to it now.  So far they’ve all ignored that request.  A potential politician’s promise to appoint the usual “experts” to yet another advisory panel is hardly reason to celebrate.

One final note of interest….on Mike Lake’s twitter thing he often posts pictures of himself meeting with Ontario politicians and saying they had a “good meeting”, etc.  But he never says what he told them.  In this program he says that he met with the Ontario government Ministers and Premier after the disastrous February announcement and he actually revealed what he told them and what his advice was.  He said that he told them that they need to think about more than just the autism program for kids, but to think of autism as a life cycle issue, i.e., education, employment, and housing.  Really?  Is that it Mike?  My recollection is that before the disastrous Ontario government announcement in February he had met with several Cabinet Ministers and posted pictures of successful meetings, etc.  What did he tell them then?  Did they take his advice in the formulation of their failed reforms of February?  Mike Lake did not address that in the program.

[Andrew Kavchak]

Hi Folks,

So this morning the Ontario Minister of Community and Social Services held a press conference to announce some changes to the Ontario Autism Program (again!).  I was listening to the press conference on the radio.  The government press release is here:

https://news.ontario.ca/mcys/en/2019/07/ontario-is-working-towards-a-needs-based-and-sustainable-autism-program.html

While it certainly sounds good to hear that treatment will be linked to the “needs” of the recipient, I found some things in the whole process rather strange.  As mentioned in my previous post, we just went through a big consultation process in Ontario and I have not seen anywhere the tabulation of the input or report on what was said by the community.  An Advisory Panel was appointed to review the results and make recommendations.

Now it seems that the government has decided not to wait for the report of the Advisory Panel and decided instead to announce today confirmation that they will be working towards the development and delivery of a “needs-based program”.  Good grief!  Does that mean that since the program’s inception in 2000 it was something else?  Now it appears that the Minister has confirmed that the budget will be $600 million, and he’s extending the mandate of the Advisory Panel with the task of advising on how to make the program “sustainable”.  I am somewhat perplexed by this.

First, for what other disorder, illness, disease, condition or syndrome has the government set up an “Advisory Panel” (which also includes people who don’t think the medical condition in question is a medical condition that needs to be treated) and asked them to make recommendations relating to the sustainability of the treatment programs under Medicare? I did a google search on “Ontario Medical Advisory Panel” and although there are numerous hits that come up, they all seem to be committees of various groups like the Pancreatic Society or something like that, and not the Ontario government.

Second, the Minister makes it sound like the idea of offering autism treatment is a precarious proposal and that the “sustainability” of the program needs to have input from “stakeholders”, etc.  Anyone familiar with government tactics can recognize a set-up: if the program falters in the future, it will be the Advisory Panel’s fault and not the government’s.  But the issue of sustainability of the program is the easiest thing to address and here’s my own “expert panel recommendation: send me post-dated cheques and include an open “IOU” Promissory Note to make annual top-ups to reflect inflation.  What’s the problem?  Honestly, when was the last time the cancer community was asked for recommendations on how to make their treatment programs “sustainable”?

Overall, I’m still disappointed that the government did not transfer the OAP to the Ministry of Health and provide OHIP (Medicare) coverage.  I’ve tried the usual sites to see if the community has posted any comments on the program. So far, not much, although one parents said the whole thing is “huge”. I think one of the obvious problems for the MFAN movement is that it has not really caught on with the majority of parents, at least, not in Ontario. At least, not as far as I can see.

[Andrew Kavchak]

Hi Folks,

Are government “consultations” and the appointment of “advisory panels” just a smoke-and-mirrors window-dressing show to pretend that governments follow a bottom-up type of democratic process?  Or do governments know in advance what they plan to do and use the various theatrical stage props to pretend that they are reflective of the will of the people, etc.?

Consider this: in Ontario, the new Conservative government was elected last summer and earlier this year the Minister of Community and Social Services began a press conference by saying that they have held consultations with the autism community and “heard” what the people want.  She then announced changes to the Ontario Autism Program (the OAP – the provincial ABA treatment program) which were so universally considered to be terrible that she unleashed an unprecedented (at least in this province) protest movement.  The result?  Changes were announced to the program, and internal party review was undertaken (by MPP Roman Baber), a new round of consultations was initiated, and an advisory panel was appointed that was supposed to review the results of the consultations and make recommendations, and the Minister was shuffled out of that job and into another (is “tourism and sport” stuff a demotion?) and a new Minister (ah…the “New Guy”!) was assigned to fix the mess.  Note: the Conservatives have dropped in the polls so much lately that something urgently needs to be done to reverse course, right?

And guess what? The Consultation process deadline does not seem to have fully come and gone with anyone noticing.  I have not seen any social media notices saying “today is the last day to submit your concerns” or anything.  The Advisory Panel is apparently meeting, but has not concluded its work or given notice about any final (or even interim) report to the government with recommendations.  Yet, over the weekend a government notice went around saying that there will be a press conference this morning at 10 a.m.  No indication was given about the topic.

Yet, the Globe and Mail got news of what is expected to be announced.

https://www.theglobeandmail.com/canada/article-ontario-government-to-reverse-direction-on-autism-program-and-provide/

The headline can make your head spin.  Government to reverse direction.   “Needs-based support”, etc.

On the one hand, it is great to hear that there seems to be some potential improvement here and the adoption of the concept that some kids with autism may have needs and the treatment (which they call “support”) should address the needs of the child. But on the other hand, if the consultations and Advisory Panel’s work are not yet completed, is it possible that there will be another “reversal of direction” in the future (depending on the panel’s recommendations?).  Or has the government made up its mind (for now)?  If so, what for consultations and Advisory Panel (if not to endorse what the government has chosen to do before the panel issues its recommendations)?

As an observer of this chaotic fiasco, I commend the protesting parents in the community for rising to the challenge of agitation and lobbying for their kids.  However, as I watch the government’s behaviour and all the twists and turns this sage has taken so far, I can’t help but be sad at the lack of clear leadership in the autism field.  And you know and I know….it ain’t over.  Where’s “Medicare for Autism”? The fight goes on…

[Andrew Kavchak]

Hi Folks,

While CASDA and company are agitating for something (e.g., a tax credit) from the Canadian federal parties in their election platforms during the coming election campaigns, the federal government in the U.S.A. is in the process of passing a law renewing a 2006 law relating to autism.

https://www.disabilityscoop.com/2019/07/25/house-passes-autism-act/26950/

Meanwhile, in Saskatchewan, a number of families with kids with autism are hopeful that things will get better…

https://thestarphoenix.com/news/local-news/i-have-hope-things-will-get-better-families-with-autism-seek-support-in-saskatchewan

I’m looking forward to seeing the Liberal and Conservative election promises relating to autism. Honestly, I don’t know why they feel they have to wait to make the announcements.  While it is true that during the summer Canadians are on holidays and politics gets less attention, the fact is that families with autism are always listening.  The sooner we hear what they are promising, the sooner we can assess it and discuss it within the community and make up our minds.  Making us wait for some strategic moment to make the announcement of the campaign promise is the usual insensitivity. Many of us have been struggling with daily challenges for years.  We could use a little hope and reason for optimism yesterday, not in two months. I would not be surprised if the campaign promises on autism, if any, would be announced just a few weeks before the election.  So….we lobby and wait for years, and then get two weeks to assess options and make up our minds.  Well, I guess that’s better than nothing, but that leaving things until the last minute really does not do much to reflect a sense of urgency in the matter, does it?

[Andrew Kavchak]

Hi Folks,

Well, I know we’re in the middle of summer vacation, but we’re three months away from the next federal election, and I’m starting to get worried.  Nothing seem to be happening on the autism front!  Oh, I know, I know, things will turn on after Labour Day, but I think we all know that there are going to be many, many issues that are going to get prime time coverage and attention once the election campaign gets going. Based on experience in previous elections, waiting around until the last few weeks to see if any political leader or candidate will mention “autism” in any campaign speech may again be wishful thinking.

CASDA came out with their NAS blueprint a few months ago and so far the NDP are biting.  They included a reference to developing a NAS in the “disability” (not “Medicare) section of their already-released election platform.  CASDA has apparently been lobbying the other parties to try to get something relating to autism included in their platforms.  I don’t know if any other autism organization or advocates are actively lobbying the federal political parties, but it will be interesting to see whether the Liberals and Conservatives will actually include something relating to autism in their platforms.

Over the years a number of people asked about the role that the federal government can play in helping to get autism treatment covered by Medicare.  Given that there is an election coming up, I thought I would try to put a few thoughts together, review some of the history, and provide some examples of what the federal government and politicians could do.  If you find this text below to be informative and useful, please feel free to distribute it, copy and paste, post, and use in your own meetings with political candidates. Thanks, and good luck!

<u>The Role that the Federal Government Can Play </u><u>in Helping Canadians With Autism Access Treatment in Medicare</u>

<u>Autism, Treatment and Lack of Medicare Coverage</u>

• Autism is a neurological disorder. Autism is a health issue. Applied Behaviour Analysis (ABA) is science and evidence-based treatment for autism.  In most provinces, including Ontario, government ABA treatment programs for autism are offered by departments of social services and not the ministry of health.  A survey of the provincial programs can be found here:

https://autismcanada.org/wp-content/uploads/2017/12/AC_ProgramsForAutismTherapy.pdf

http://publications.gc.ca/collections/Collection-R/LoPBdP/PRB-e/PRB0622-e.pdf

• Thus, Canada’s public health insurance program (Medicare) does not cover the cost of autism treatment. In Ontario, the Ontario Autism Program (OAP) is administered by the Ministry of Community and Social Services.  Thus, the Ontario Health Insurance Plan (OHIP) cards are of no use in accessing autism treatment in Ontario.  Many provincial plans have numerous restrictions such as age-cut-offs are funding limits. One result is that children who need treatment cannot access it and parents are forced to resort to the private sector at tremendous expense.
• The lack of Medicare coverage for autism treatment is key problem for the autism community. Until the cause and cure of autism are discovered, it is crucial that children who are diagnosed with autism have access to ABA treatment as quickly as possible and that it be covered by Canada’s public health insurance system.

<u>Role of the Federal Government</u>

• The federal government can play a leadership role in trying to correct and improve the situation across the country. Although healthcare delivery is a provincial responsibility, the federal government owns the Canada Health Act (CHA) and provides the provinces with financial resources through the Canada Health Transfer (CHT).

https://www.fin.gc.ca/fedprov/cht-eng.asp

https://en.wikipedia.org/wiki/Canada_Health_Transfer

The federal government also negotiates “Health Accords” with the provinces which sets out how funding will be used in future years.

https://www.canada.ca/en/health-canada/corporate/transparency/health-agreements/shared-health-priorities.html

<u>Government Strategies and  a “National Autism Strategy”</u>

• It is common for the federal government to develop a “strategy” or “action plan” to address perceived problems that require government action. For example, the Liberal government created a first ever “National Housing Strategy” involving expenditures of $40 billion over 10 years. The autism community has for many years asked federal politicians to develop a “National Autism Strategy” (NAS). Historically, many federal politicians have been reluctant to use the term and hidden behind the “it’s provincial” excuse.  Once there is a federal government agreement that autism public policy could be improved through a NAS, the next question is what should such a NAS contain?  What should the federal government actually do?

<u>CASDA’s NAS “Blueprint”</u>

• CASDA recently issued a “blueprint” for a NAS which it hopes will be adopted by every federal political party in the election. The blueprint attempts to address areas of concern to people with autism throughout the lifecycle, including “access to supports”, employment, housing, etc. Regrettably, the CASDA blueprint does not address the issue of accessing ABA treatment for autism under Medicare. In their “access to support” section they refer to tinkering with tax credits and deductions, etc.  There is no reference to Medicare. In fact, in one of the blueprint documents on the CASDA website they specifically say that the proposed NAS does not seek to change any provincial policy.  A critique of the CASDA blueprint can be found here: https://ottawacitizen.com/opinion/columnists/kavchak-federal-parties-must-support-autism-funding-and-mean-it
• Recently the federal NDP party issued their election platform. In the section dealing with Medicare, they refer to getting eye and dental care coverage under Medicare, etc., but not one word about autism treatment. However, in another section about disabilities, they refer to undertaking consultations to develop a NAS.  Given the lack of any reference to autism treatment in the Medicare section of the platform, one can assume they are looking to reflect the CASDA blueprint, which does not address the issue.

<u>What the Federal Minister of Health Could Do</u>

• If the federal government recognized that the lack of Medicare coverage for autism treatment was a serious issue that required action, it could task the Minister of Health to meet with his provincial counterparts and determine through discussions and negotiation, what would it take to have autism treatment programs provided by the provincial ministries of health and covered by Medicare. The federal government could demonstrate leadership in this regard and use all the tools at its disposal to provide the provinces with incentives (most notably a negotiated funding formula) to make the transition so that autism treatment would be covered by Medicare in every province.

<u>How to Task the Minister of Health – Mandate from PM or by Law, etc.</u>

• Besides a Minister being proactive and displaying some leadership on his own, a Minister of Health may be tasked to undertake such an endeavor through a number of ways including a mandate letter from the Prime Minister or Cabinet agreement and direction, etc. Alternatively, it could be done by law. A bill could be tabled in Parliament that could require the Minister to engage in consultations with their provincial counterparts to work towards a NAS, which could specifically identify the issue of getting Medicare coverage for autism treatment as being one that needs to be addressed.  Numerous bills of this nature have been tabled in the past for autism, and for other disorders.

<u>Bill C-304 and Opposition to Amending the Canada Health Act </u>

• Note: many people have suggested that the Canada Health Act (CHA) could be amended to require that the provinces provide autism treatment. Numerous Private Members Bills (non-government bills) that would make such amendments to the CHA have been tabled in the past and have been controversial and have failed.  Although the Liberals were in power from 1993 to 2006, they failed to do anything on the autism front.  However, once in opposition, Shawn Murphy (Liberal MP from PEI) tabled his Private Members’ Bill C-304.  The bill contained two parts.  One that required the Minister of Health to work with the provinces to develop a NAS for the treatment of autism (although it did not specify getting autism treatment covered by Medicare), and the other involved a change to the CHA to include autism treatment.  The bill is short and can be found here: https://www.parl.ca/DocumentViewer/en/39-1/bill/C-304/first-reading/page-4
• The bill was defeated in February 2007 when the Conservatives and the Bloc Quebecois voted against it. At that time Mike Lake issued a “statement” denouncing the bill and attempting to explain why he voted against it. He only criticized the part about amending the CHA, and said nothing about the other part about the Minister of Health creating a NAS. You won’t find the statement on his website now, but you can find an annotated one on the FEAT BC website at: http://featbc.org/downloads/FEATBC_release_02_26_07.pdf
• It should be noted that years later Mike Lake was involved the proposal of a “Canadian Autism Partnership Project” (CAPP) which was touted as something that would address the concerns of the autism community. The CAPP business plan was not presented to the government when the Conservatives were in power, and the Liberal government ignored the proposal.  The CAPP proposal was supported by many and criticized by others (for being the creation of another bureaucracy with no clear mandate or authority to resolve any problems etc.)  A critique of CAPP can be found here:

https://www.thestar.com/opinion/commentary/2017/01/06/more-bureaucracy-not-the-solution-for-autism-treatment.html

<u>Bills to Create a National Autism Strategy</u>

• Another National Autism Strategy bill was tabled by Glenn Thibault in 2015. The text of Bill C-219 can be found here:

https://www.parl.ca/DocumentViewer/en/41-2/bill/C-219/first-reading/page-4

A similar Bill C-504 was tabled in 2010.

https://www.parl.ca/DocumentViewer/en/40-3/bill/C-504/first-reading/page-4

• Unfortunately, none of these bills got to first base.

Motion M-172 Calling for a National Autism Strategy was Approved and Ignored

• Although Andy Scott was a Liberal Minister in the Chretien and Martin governments his main initiative in support of the autism community came only in 2006 when he was in opposition and tabled motion (M-172) for the creation of a National Autism Strategy.
• M-172 read as follows: “That, in the opinion of the House, the government should create a national strategy for autism spectrum disorder that would include: (a) the establishment, in cooperation with provincial governments, of national standards for the treatment of autism spectrum disorder and the delivery of related services; (b) the study, in cooperation with provincial governments, of the funding arrangements for the care of those with autism spectrum disorder, including the possibility of transferring federal funds to assist provincial governments to provide no-cost treatment, education, professional training and other required supports for Canadians with autism spectrum disorder without unreasonable wait times; (c) the
  creation of a national surveillance program for autism spectrum disorder to be managed by the Public Health Agency of Canada; and (d) the provision of funding for health research into treatments for autism spectrum disorder.”
• The House of Commons voted on the Motion and approved it on December 5, 2006.

https://www.ourcommons.ca/DocumentViewer/en/39-1/house/sitting-91/hansard

All parties voted in favour of the motion except for the Bloc Quebecois which was more concerned with opposing federal activity than helping current and future Quebecers with autism.

• Regrettably, motions are not binding on the government. This one has been ignored and forgotten.

Liberal Party Resolution for Autism Treatment Under Medicare was Approved and Ignored

• The Federal Liberal Party holds policy conventions every two years. At the 2016 convention they debated and approved a resolution regarding autism treatment and Medicare.

https://winnipeg2016.liberal.ca/policy/medicare-coverage-for-the-treatment-of-autism/

• Regrettably, the resolution of the party is not binding on the government. It has so far been ignored.

Federal Government’s “National Dementia Strategy”

• The previously-tabled Private Members’ Bills that required the federal Minister of Health to work with their provincial counterparts to develop a NAS are consistent with the Liberal government’s Bill regarding the development of a National Dementia Strategy.

https://laws-lois.justice.gc.ca/eng/annualstatutes/2017_19/page-1.html

• The federal Act is called “An Act Respecting a National Strategy for Alzheimer’s Disease and Other Dementias”.  It was first tabled as Bill C-233 in the House of Commons on February 25, 2016.  It was referred after second reading to the Standing Committee on Health and was passed by the House after third reading on February 3, 2017.  First reading in the Senate took place on February 7, 2017 and it was referred to the Standing Senate Committee on Social Affairs (the same one that issued the Pay Now or Pay Later report in 2007) on March 28, 2017.  The Senate passed the Bill at third reading on June 21, 2017 and it received Royal Assent on June 22, 2017 and became law (S.C. 2017 c.19).
• The Act is short, to the point, and does not require a legal education to understand it.  In essence, the federal law requires the federal Minister of Health to cooperate with provincial counterparts to develop a national strategy.  The Minister must then report on its effectiveness on a regular basis going forward.
• The government budget of 2019 allocated $50 million to the implementation of the National Dementia Strategy, even though the strategy had not yet been announced. The Strategy was only publicly released later. https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy.html

<u>How One Opposition MP Got Some Action on Multiple Sclerosis</u>

• David Yurdiga is a Conservative Party MP from Cold Lake, Alberta (just a little north from the Edmonton riding which Mike Lake represents). His wife suffers from Multiple Sclerosis.  Yet, instead of just making “awareness” speeches about his wife, he tabled in May 2018 a Motion, M-192, to refer to a Standing Committee of the House of Commons the task of providing recommendations for legislative and policy changes to help people with MS.  The Motion was debated in the House of Commons and approved in November 2018.
• The Standing Committee then held hearings and heard from witnesses. In March 2019 the Standing Committee issued a report with 11 recommendations.

https://www.ourcommons.ca/Content/Committee/421/HUMA/Reports/RP10367115/humarp15/humarp15-e.pdf

• The government issued a press release about the report which is available here:

https://www.ourcommons.ca/DocumentViewer/en/42-1/HUMA/news-release/10367245

Note the paragraph that states: “The Committee’s report is based upon testimony provided by a variety of witnesses – including people living with episodic disabilities. The report presents new data on episodic disability and speaks clearly to the need to expand our understanding of disability to include episodic experiences. It also underscores the desire of people with episodic disabilities to remain active and productive in the labour force while recognizing that they need more support, including income support during periods when their disability prevents them from working. The report presents conclusions and the Committee’s recommendations to Employment and Social Development Canada, including recommendations to work together with other federal departments and agencies as well as other levels of government to address the challenges facing people with episodic disabilities.”

• The government is now in a position where it has to reply to the report and its recommendations (at the time of writing it appears the government has not yet issued a reply).

<u>How a House of Commons Standing Committee Report Can Help</u>

• It should be noted that in 2007 Senator Munson was successful in getting a Standing Senate Committee on Social Affairs to conduct a study on funding for autism treatment. It issued its “Pay Now or Pay Later: Autism Families in Crisis” report in 2007.

http://publications.gc.ca/collections/collection_2007/sen/YC17-391-1-01E.pdf

• Unfortunately, the neither the Conservative nor the Liberal governments have paid any attention to the report and its recommendation for the negotiation of a funding formula. However, governments are more likely to pay attention to the reports and recommendations of the House of Commons committees, particularly when they are in a majority government situation with a majority of the members on the committee.
• It would be undoubtedly helpful if the House of Commons Standing Committee on Health would undertake a study and issue a report relating to getting autism treatment covered by Medicare, as they did with their recent comprehensive report regarding the creation of a national Pharmacare program.

https://www.ourcommons.ca/Content/Committee/421/HESA/Reports/RP9762464/hesarp14/hesarp14-e.pdf

It should be noted that the most recent Liberal budget contained expenditures intended for the taking of the first steps in the development of a national Pharmacare program.

• Unfortunately, letters from parents to previous Chairs and members of the House of Commons Standing Committee on Health to place autism on their agenda has been fruitless. However, it is not clear whether any MPs have made any similar requests. It does not appear that any have tabled any motions similar to the one referred to above regarding MS.

<u>Conclusion</u>

• The bottom line is that where there is the political will, there is a political way. The federal Minister of Health could call a meeting with their provincial counterparts, put some money and other incentives on the table, and negotiate the inclusion of autism treatment under Medicare. The transfer of the autism treatment programs to the provincial departments of health with Medicare coverage would enable the provinces to supplement their current spending on autism treatment through access to funds from the Canada Health Transfer and any separate “Health Accords” and any other funding arrangements that are negotiated. Is federal leadership to bring Canada into the 21rst century when it comes to helping kids with autism really too much to ask for?

[Andrew Kavchak]

Hi Folks,

Well, the office of the Ontario Ombudsman just released an annual report.

https://www.ombudsman.on.ca/resources/reports-and-case-summaries/annual-reports/2018-2019-annual-report#Social%20Services

I note two things of interest in it. First, under the “Ontario Autism Program” (this is the ABA treatment program that is offered by the Ministry of Community and Social Services) it says:

“Ontario Autism Program

Complaints to our Office about developmental services programs – and services for children with autism in particular – have ebbed and flowed over many years, with spikes in complaints typically occurring when governments announce changes to funding programs and eligibility criteria.

On February 6, 2019, the government announced the latest such change, introducing a system of direct funding to families of children with autism, as well as a strategy to reduce or eliminate waitlists for services. Initially, the level of funding was to be determined by household income, but this was later revised to provide for some funding regardless of income. Other announcements related to continuing services that were already being provided under individual behaviour plans, expanding the list of services eligible for funding, and further consultation on supporting children with complex needs.

We received 575 complaints about autism funding for children this year, 569 of those after the February announcement. Many families and other stakeholders raised concerns about the funding cap and the potential effects of the changes, and a significant number were angry about the government’s policy decision and political approach.

In dealing with such complaints, the Ombudsman and staff distinguish political questions from administrative ones. The Ombudsman does not intervene in broad public policy decisions or actions taken by elected officials. However, our Office does work to ensure that the implementation and administration of such decisions is fair, accountable and transparent.

Senior Ombudsman staff met with officials at the Ministry to review the rollout of the new funding program and to discuss trends in complaints. These include concerns about reduced funding, inadequate communication with affected parents and stakeholders, the impact of the changes in the far North (given the unique needs of Indigenous families in fly-in and other remote communities). We continue to meet with the Ministry on a regular basis and are actively monitoring steps being taken to address the administrative issues that have been raised.”

Regarding the Ontario Health Insurance Plan (OHIP – or Medicare), the report includes these paragraphs:
<h5>“Ontario Health Insurance Plan (OHIP)</h5>
Complaints about OHIP decreased slightly in 2018-2019, to 118 from 132 in the previous year. The most common issues continue to involve the renewal and replacement of health cards. Many complainants also faced difficulties in obtaining health coverage after an absence from Ontario, or because they do not have a permanent address. For example: [an example is given here in the report]

We also continue to receive complaints from people who disagree with OHIP’s lack of coverage for specific medical procedures and treatments, such as physiotherapy, or certain types of cosmetic or reconstructive surgery, or its denial of requests to cover medical treatments outside of Ontario. In these cases, we review the Ministry’s reasons for the decision and whether it is evidence-based.”

So what are we to deduce from this information? The Ombudsman gets complaints about lack of coverage for treatments, but with only a reference to physiotherapy and surgeries, it seems that there were no complaints about the lack of autism coverage or they were not enough to warrant mentioning. Does this really mean that no one in the province is concerned about the issue? Just think what would happen….the Ombudsman would request the Ministry’s reasons and would then determine whether it is “evidence-based”.  Sometimes bureaucrats get so caught up in their own terminology that they don’t seem to realize that they don’t make sense.  It would be interesting to witness the Ombudsman ask the Minister of Health for “evidence” to support the historic and ongoing denial of Medicare coverage.  What evidence would the Minister give? What is the Ombudsman talking about?

[Andrew Kavchak]

Hi Folks,

Two things. First, I submitted this letter a while ago, and the Ottawa Citizen finally published today.

https://ottawacitizen.com/opinion/letters/todays-letters-how-to-help-autistic-children-in-ontario

Health minister should take charge of autism file

Re: How much has Ford damaged Lisa MacLeod? June 24.

Shortly after Lisa MacLeod was first elected to the legislature in a 2006 byelection, she attended a demonstration that I organized in front of Premier Dalton McGuinty’s constituency office. As a parent of a child with autism who was not getting treatment under OHIP (i.e. medicare), I entered the world of political activism and was glad to see the newly elected opposition MPP attend the rally to offer her support. At the demonstration, MacLeod took the megaphone and stated that she had learned a lot about the challenges of the autism community from her NDP opponent Laurel Gibbons during the campaign and was going to be our autism community’s advocate in the legislature.

As a member of the autism community who has for many years looked upon changes in government and ministers as a reason for hope, I found her bungling of the file over the past year a profound disappointment and her recent removal from the portfolio a sad ending to a wasted opportunity that was more than a dozen years in the making.

Many parents have come together to express their children’s need for access to treatment. Clearly, something was not working and her planned changes were perceived as making things worse. However, the solution the premier should have considered was not removing MacLeod from the Ministry of Community and Social Services (MCSS), but removing the “Ontario Autism Program” (OAP) from the MCSS and transferring responsibility for autism treatment to the Ministry of Health, where it appropriately belongs.

Autism is a neurological disorder and access to treatment following a child’s diagnosis is a health care issue. Where is the logic in putting the program in the hands of bureaucrats who deal with welfare, disability pensions and human trafficking? What would be the reaction of the Cancer Society if the premier said that from now on all cancer treatment services were going to be the responsibility of the Ministry of Agriculture?

The government has perpetuated this ongoing calamity and attempted to generate some credibility and legitimacy by conducting another round of public consultations and appointing another advisory committee. It is my sincere hope that the government will acknowledge and positively respond to the key request that parents like me have been making for decades: “Medicare for autism now, please!”

Andrew Kavchak, Ottawa

Second, although I am not an active participant in “social media” and don’t have any Facebook or Twitter accounts, I occasionally look at what is posted on these sites relating to autism.  On one site I came across a Twitter post of a mother who had a telephone chat with Mike Lake.  As you may perhaps know, some people have asked Mike Lake to elaborate on his, and his party’s positions with respect to autism and a national autism strategy, etc.  He never seems to reply with any detailed written statement or declaration, but instead invites the person to participate in a private phone conversation.  Well, this one mother apparently did speak with him and then posted a message saying that apparently Mike Lake supports a National Autism Strategy, but only after the budget is balanced (!!!).  Assuming that is an accurate reflection of what he told the lady in private, I wonder whether he expressed such concerns about a necessary financial condition precedent during the debate over the legislation to create a National Dementia Strategy?  If so, I did not see it.  Did you? Why would such a condition be required for autism but not for any other health disorder?  Just wondering…

[Andrew Kavchak]

Hi Folks,

Well here’s a great example of one parent in Ontario getting some media publicity for the cause and putting pressure on the federal government.

https://torontosun.com/news/provincial/concerned-dad-and-activist-urges-pm-to-listen-to-own-party-on-autism

Unfortunately, the quote at the end from the spokesperson for the Minister of Health makes it pretty clear that the federal Liberals are unlikely to adopt any significant autism policy in their election platform.  The suggestion that they want to help and that’s why they invested in a “national platform” to help find resources may be interpreted as quite a brush off.  The announcement of $10 million for a website was made in the February 2018 budget….we’re now in July 2019….and where’s the website?  Even if the website turns out to have lots of information on it, how is that going to help get autism treatment covered by Medicare?

And the news in Ontario….the new Minister of Social Services has announced a new development on the autism file.  The province will start posting autism wait list numbers online and update them monthly. Does the Ministry of Health do that for any other medical service?

https://www.thestar.com/politics/provincial/2019/07/03/autism-wait-list-statistics-to-be-posted-online-updated-regularly.html

[Andrew Kavchak]

Hi Folks,

Well, just when you thought you heard it all, a new media story fuels the concerns of those who believe that government engages in too much deliberate distortion, misrepresentation and propaganda in their efforts to “manage” the autism file.  Dr. Freeman wrote a book years ago about “Science for Sale in the Autism Wars” about how government witnesses in the Auton court case misrepresented the science when fighting over evidence.  By now there is more than enough history and material for any doctoral student of “mass communications” or “public policy” to write a major thesis evaluating the ways in which many successive governments have manipulated the autism file in their communications.  By now we should all be able to recognize words and trends, patterns and “repetitive behaviour” that ultimately do nothing but postpone action and preserve the status quo in one way or another (all while giving the public the impression that the government has the matter on the agenda of priority items and is trying to proceed in a most responsible and competent manner, etc.).

One of the elements of the story below is the reference to multiple “reviews”.  I mean, how many times does a government need to review the state of the autism program before embarking on steps to improve it?  It seems that there are really two autism programs in Ontario (and elsewhere).  One is the supposed “Ontario Autism Program” which is supposed to serve children with autism, and the other is the mercurial and hard to pin down “Ontario Autism Program Review Program” which involves the regular appointment of individuals or groups to conduct reviews, consultations, etc. This includes the behind-the-scenes appointment of people to write internal reports for the Premier and the appointment of “advisory committees”, and even the involvement of other offices such as the Auditor General. It would appear that the review of the autism file has become an industry in itself.  Perhaps the time has come for the Premier to add a new chair at the Cabinet table for a new “Minister for the Perpetual Review of Autism Programs and the Deliberate Obfuscation of Autism Communications”.

Check out this article in the Globe and Mail with the headline: “Ford government deliberately spread misinformation about autism program, internal review says”.

https://www.theglobeandmail.com/canada/article-leaked-internal-report-says-ford-government-botched-new-autism-program/

https://www.chch.com/leaked-autism-file-leaves-families-complaining-about-ford-government/

https://www.thestar.com/politics/provincial/2019/06/28/ontario-minister-lisa-macleod-lands-in-hot-water-with-autism-advocates-again.html

[Andrew Kavchak]

Hi Folks,

Every once in a while there are some real weird headlines in the media relating to autism.  I know reporters have to report and the business of the media is partially entertainment, which sometimes involves the dissemination of stories that are not very convincing. But maybe they are.  Some.  But not all.  Take for example a recent story out of Calgary.

https://www.cbc.ca/news/canada/calgary/valanmanal-homosexuality-autism-calgary-diocese-retreat-1.5183349

A priest apparently linked a few different things with autism, or implied that they were the cause of autism. Here’s a quote from the story: “Alcohol, cigarette, beedi [Indian cigarettes], narcotics, Pan Parag [chewing tobacco], adultery, masturbation, homosexuality, porn; if you are addicted to these, I say to you in the name of God … when you get married and have children, there is high possibility of bearing these types of children.”

Well, if addiction to the listed activities does not cause autism, maybe it’s…processed food.

https://www.medicalnewstoday.com/articles/325546.php

https://www.medscape.com/viewarticle/914911

While some outlets may be telling us interesting theories or research results about the causes of autism, other stories about the “cures” can be perplexing. Did you see the latest about bleach?

https://www.vox.com/2019/6/19/18684109/autism-vaccines-treatment-cure-bleach

Some people (like me) think that the problem with the delivery of autism treatment in Ontario (and in many other provinces) is that it is not done by the Ministry of Health and covered by Medicare.  I always considered this the core problem in Ontario.  Yet, in all the recent brouhaha in Ontario many parents have become activists and are protesting and getting media attention.  But rarely in the stories or interviews do I hear a reference of the need for Medicare to cover autism treatment.  One of the most recent media stories suggests that according to one parent, the main problem is communication and the need for the government to do it better.

https://www.cbc.ca/news/canada/hamilton/autism-ontario-1.5188719

This reminds me of the line in a Simpson’s episode where Homer distills the problem in most marriages as being “communication”, and then elaborates by specifying “too much communication!” Clearly in some situations communication will help resolve a dispute.  I’m not sure how “better communication” from the government will solve the discrimination in Medicare.  But evidently that’s not a problem worthy of mentioning for some.

And every once in a while one comes across an article which revives one’s faith in the cops to catch the robbers.  In this case, an autism fraud in the millions has come to an end with two ladies spending time.  How many other scams may be ongoing and ripping more millions out of the system?

https://www.heraldonline.com/latest-news/article231939028.html

The grass always appears greener on the other side of the fence, and sometimes it is.  But then again, sometimes, on closer inspection, it is not.  Take the Netherlands for example.  Great place.  Clean, healthy, wealthy, wise, everybody is tall and slim, etc.  But what’s this?

https://www.spectrumnews.org/news/netherlands-law-limits-childrens-access-autism-services/

Sounds like a familiar theme….limiting children’s access to autism services by law.  Sounds like their grass may not be that green after all!

 

 

[Author]

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