[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

[Dione Costanzo]

**FEAT RADIO INTERVIEW TODAY**

Jean Lewis will be speaking on the Charles Adler show today at 1pm on CKNW 980 AM. She will be joined by a Toronto parent, Brenda Deskin.

Discussion will center around FEAT's coast to coast political initiative.

[Dione Costanzo]

**FEAT RADIO INTERVIEW TODAY**

Jean Lewis will be speaking on the Charles Adler show today at 1pm on CKNW 980 AM. She will be joined by a Toronto parent, Brenda Deskin.

Discussion will center around FEAT's coast to coast political initiative.

[Andrew Kavchak]

Debates of the Senate (Hansard)
Thursday, April 19, 2007

Senators' Statements

Funding for Treatment of Autism

Hon. Jim Munson: Honourable senators, as you know, last month the Standing Senate Committee on Social Affairs, Science and Technology released its final report — Pay Now or Pay Later — on my inquiry on the funding for the treatment of autism.

While I am proud of that report and pleased that the Senate has brought the issue of autism to the attention of the government and to the people of this country, this is just the beginning. The next step is for the government to take the recommendations, put some policies in place and ensure that the Canadian families who are coping with this crisis are not alone.

A report is nothing if it is not backed by action. Autism affects 50,000 children and 150,000 adults in Canada, and those numbers are growing. This report draws our attention to a pressing and urgent issue — but it does not deliver treatment. It does not provide a break for families who are faced with the full-time care of a high-needs child. It does not pay the bills that are neglected because of the high cost of private autism therapy. It cannot mend the marriages that break up due to the stress autism causes in a family. The incidence of autism is a crisis that requires a national strategy.

We talk about waiting lists for surgery, cataract surgery and knee and hip replacements — and of course, we need to shorten these waiting lists. However, we have another waiting list. Children with autism across Canada are on waiting lists to get treatment. Some will never get treatment because they will not be eligible after a certain age. Some will be eligible for treatment but no therapists will be available. Others still will regress into silence and isolation after their treatment, judged no longer necessary, is withdrawn.

We recognize as a nation the need to tackle health issues together. Cancer, strokes, heart attacks, obesity, all of these health issues affect Canadians across the country and we all consider them worthy of national action and attention. My hope is that the Senate report will take us one step closer to putting autism on the list of urgent health issues that require our immediate attention.

[Andrew Kavchak]

House of Commons
Hansard
Monday, April 23, 2007.

Oral Questions

Ms. Penny Priddy (Surrey North, NDP):

Mr. Speaker, last week the Minister of Health lost his cool in an interview with the Vancouver Sun saying that members of the group Families for Early Autism Treatment are trying to intimidate him.

This is an organization of parents with autistic children. They are trying to get the federal government to provide the support they need to raise their children, but the Minister of Health has labelled them as extremists.

Is this really what Conservatives think of people who try to get their government to do the right thing? Does the minister really believe that advocating for one's child's health and well-being makes one an extremist? Will the minister tell us what other advocacy groups are on his list?

Hon. Tony Clement (Minister of Health and Minister for the Federal Economic Development Initiative for Northern Ontario, CPC):

Mr. Speaker, nothing could be further from the truth. Indeed, this government, I was pleased to announce on behalf of the Prime Minister and the government, has done more when it comes to autism and ASD in terms of the federal capacity to deal with this issue than any other previous government.

When it comes to research, when it comes to ASD surveillance, when it comes to a research chair, when it comes to reorganizing Health Canada to make sure that it can deal with ASD, this government has put kids with autism and parents who are suffering as a result of their kids having autism on the front burner. We are proud of this government for doing so.

[Andrew Kavchak]

Please visit Senator Munson's website at:
http://www.sen.parl.gc.ca/jmunson/

Our Champion for the cause has made a speech, written an op-ed and appeared on the Ottawa local all news CFRA radio "lunch bunch" program all within the last day talking about autism.

[Andrew Kavchak]

A New Study and a Commentary piece from Senator Munson:

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Eikeseth,S., Smith,T. Jahr,E., and Eldevik, S.
Outcome for Children with Autism who Began Intensive Behavioral Treatment Between Ages 4 and 7: A Comparison Controlled Study
Behavior Modification, Vol. 31, No. 3, 264-278 (2007)
DOI: 10.1177/0145445506291396

This study extends findings on the effects of intensive applied behavior analytic treatment for children with autism who began treatment at a mean age of 5.5 years. The behavioral treatment group (n = 13, 8 boys) was compared to an eclectic treatment group (n = 12, 11 boys). Assignment to groups was made independently based on the availability of qualified supervisors. Both behavioral and eclectic treatment took place in public kindergartens and elementary schools for typically developing children. At a mean age of 8 years, 2 months, the behavioral treatment group showed larger increases in IQ and adaptive functioning than did the eclectic group. The behavioral treatment group also displayed fewer aberrant behaviors and social problems at follow-up. Results suggest that behavioral treatment was effective for children with autism in the study.

Key Words: autism • early intervention • behavior modification • behavior analysis
http://dx.doi.org/10.1177/0145445506291396

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Web-exclusive comment

We can't ignore the facts about autism funding
JIM MUNSON

Special to Globe and Mail Update

It's not as if parents of children with autism spectrum disorders have a lot of spare time. In addition to caring for and arranging education for children with very high needs, Canadian parents have to lobby and sue governments for the care their children require.

In Ontario, a group of parents took the provincial government to court arguing that, among other things, their children's Charter rights were violated by lack of access to intensive behavioural intervention therapy in the classroom. The parents won the first round in 2005, but the Ontario Court of Appeal overturned the decision last year. And just last week, the Supreme Court of Canada refused to hear the parents' appeal.

Canada's courts have made it clear that responsibility rests with politicians to deliver the necessary funding for IBI, a therapy that has proven successful for so many children. In the meantime, the provinces offer a mixed bag when it comes to autism treatment — and because it takes place outside of hospitals and doctors' offices and is delivered by a multidisciplinary team of professionals, including teachers, therapists, and social workers, it's not covered by the Canada Health Act. The result is that across the country, parents of children with autism are scrambling for treatment and support.

There are facts we can't ignore when it comes to autism in Canada:

— Autism affects 50,000 children and 150,000 adults in Canada and those numbers are growing.
— Divorce rates for parents of children with special needs are far above the national average.

— The cost of intensive behavourial intervention or applied behavioural intervention is approximately $60,000 a year for each child.

Yes, treatment is expensive, but it has been shown to help.

Without it, children with autism who are dependent on their parents for care and support grow up to be adults with autism who are dependent on society for care and support once their parents are gone. And as the baby boomer population ages, this is very real concern.

No one pretends that parenting children who develop normally is a walk in the park, but for parents who have a child with autism, it is a lonely walk to places unknown. We owe it to them, and to ourselves, to take action and commit federal dollars to a national strategy for autism that includes targeted funding for treatment.

Jim Munson is a member of the standing Senate committee on social affairs, science and technology, which recently issued the report "Pay Now or Pay Later: Autism Families in Crisis."

[Andrew Kavchak]

A message from Ontario…

April 18, 2007

Dear friends and fellow members of the autism community;

In 2003, a number of us began a process to file a class action lawsuit against the Ministry of Education, Ministry of Children and Youth Services, and seven school boards in Ontario for failing to provide or fund Applied Behaviour Analysis (ABA)/Intensive Behavioural Intervention (IBI) in the education system or without excessive and detrimental delays. Our case, known as the “Sagharian Class Action”, involves five Plaintiffs representing on behalf of children with autism and their families in seven school boards. A number of anonymous Founding Class Members have also generously contributed both financially to the case and by providing advice and moral support to the Plaintiffs. We recently announced our intent to appeal the March 12, 2007 Superior Court of Justice decision on the motion to strike out portions of our statement of claim and are therefore at the stage of the Court of Appeal for Ontario for the motion to strike.

The autism cause took a big step backwards on April 12, 2007 with a judgment from the Supreme Court of Canada denying leave to appeal in the case of Wynberg and Deskin and thousands across our country joined in the grief. Aside from the general recognition these families have brought to the autism cause, the Wynbergs were responsible for initially bringing ABA into Ontario, and the Deskins helped to initiate the implementation of the AIP (Autism Intervention Program). These families will always be heroes to us and we will forever be grateful to them for all that they have done and continue to do.

One generation of autism has suffered two blows from the Supreme Court, first Auton, and now Wynberg. What has changed since the court decision? I’m afraid the answer is not much.

The autism problems in Ontario are not going to go away until such time that a solution is developed, one that meets the needs of our children. So long as the problems continue, our case, the Sagharian Class Action, is going to continue. Also the rallies are going to continue, our message to the public is going to continue, and lobbying directly to the government, both at the provincial and federal level, as well as the school boards, is going to continue. The autism community is not going to give up.

Sincerely yours,

The Plaintiffs and Founding Class Members of the Sagharian Class Action

[Isaac]

On the heels of Canada's second — and shameful! — Supreme Court of Canada ruling intended to further the systemic exclusion of autistic children from any meaningful protection under the Charter of Rights and Freedoms, we again have a chorus of opinion flowing from our community (and into mainstream press such as MacLeans's) regarding the need for broader, more vigorous political action on a national level, to further the cause of public funding for medically necessary autism treatment.

In this vein, I would highly recommend a video of the recent Families for Early Autism Treatment rally in Ottawa (November 2006), kindly recorded by an Ottawa dad, Richard Clowater, and led by FEAT's stalwart on the Hill, Mr. Andrew Kavchak.

This rally, in my view, represents what political action is all about, with its amazing support from families and an impressive list of speakers in support of the cause.

The video of the event is about 29 minutes in length and can be viewed at this address:

–> https://featbc.org/ottawarally.html

The clip may take a minute or two to set up in your browser before you can click on the play button.

Isaac

[Andrew Kavchak]

Yesterday the French station of TV Ontario offered me a chance to be on their "Panorama" program in the evening to discuss the SCC decision to refuse to hear the Deskin/Wynberg appeal. French is not my first language, but I could not pass this opportunity up.

A video of the interview is now on their website, (see the link below). I have no idea how long the video will remain on their website.

http://www.panorama.tfo.org/cfmx/tfoorg/panorama/index.cfm?s=videotheque&v=11195

When you click on it you have to wait a while for the program to load up and play.

The video from the TFO website – home page at: http://www.panorama.tfo.org

Merci!
Andrew Kavchak
Ottawa
______________________________________
Autisme : décision de la cour suprême
16 avril 2007
La Cour suprême refuse d'entendre la cause de 28 parents d'enfants autistes qui demandent des compensations à la province de l'Ontario pour les traitements de leurs enfants. Ces mêmes familles pourraient avoir à défrayer des montants pouvant atteindre jusqu'à 60 000 $ par année pour des thérapies spécialisées. PANORAMA reçoit Andrew Kavchak, membre de l'association Alliance for Families with Autism, dont l'enfant est autiste.16 avril 2007

http://www.panorama.tfo.org/cfmx/tfoorg/panorama/index.cfm?s=videotheque&v=11195

TFO, la télévision éducative et culturelle de l'Ontario français (Canada), est un chef de file mondial en matière d'éducation.

[Andrew Kavchak]

A national strategy is urgently needed for autism victims

The Vancouver Province

Apr 15, 2007

Page: A24
Section: Editorial
Edition: Final

Advocates for the estimated 200,000 Canadians suffering from the neurological disorder known as autism suffered another setback last week in their campaign for greater government support.

A court battle launched by 28 Ontario families to try to get their provincial government to fund treatment for their autistic children ground to a halt when the Supreme Court of Canada declined to hear arguments in the case.

Across the country, the decision was greeted with dismay.

Michael Lewis, president of the Autism Society of B.C., says the court abdicated its responsibility to uphold Canada's Charter of Rights.

But it has become abundantly clear that a cure for the "nightmare" of families struggling with back-breaking bills for autism therapy will not come from the courts.

That was indicated in 2004, when the Supreme Court refused to order the B.C. government to fund autism treatments, saying the province had the constitutional right to decide priorities in health-care funding.

It's up to our politicians, therefore, to take the initiative. And there's a huge incentive to do so.

Lewis, himself the father of an autistic child, says that early intervention is successful in 47 per cent of cases.

One problem has been that autism is little understood. There are disagreements over how to define it and how to treat it.

Another difficulty is the cost. Families can pay as much as $60,000 a year for the necessary doctors, psychologists, psychiatrists and other professionals.

The help they get depends on where they live. Alberta, for example, pays up to $60,000 a year to age 18 for treatment. But B.C. pays $20,000 a year to age six and only $6,000 a year thereafter.

B.C. Liberal MP Blair Wilson, who campaigns for autism victims, says such inequity is unacceptable. We agree, and endorse a Senate committee's call last month for a federal-provincial conference to develop a national strategy for autism, which now affects one in 200 children.

The plan should include an awareness campaign, plus more money for research and tax breaks for victims' families. One sweeping solution would be to amend the Canada Health Act to include autism as an insured health service.

We are well aware that the additional burden on health costs would be considerable and would have to be weighed against competing priorities.

But, as a caring nation, we have a moral obligation to do what is right.

Colour Photo: Blair Wilson

[Author]

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