[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]

From the Health Canada website, an important message from federal Health Minister Tony Clement about how the government is helping to raise autism awareness (although evidently not at the Revenue Canada Collection Agency)…
_________________

Message from Tony Clement, Minister of Health

United Nations World Autism Awareness Day – April 2, 2008

April 2nd, 2008 marks the first annual Autism Awareness Day, launched by the United Nations and recognized worldwide. The aim of this day is to raise global awareness about autism, and to promote early diagnosis, intervention and services for individuals and their families coping with this disorder.

Autism Spectrum Disorder (ASD), or autism, affects individuals from all walks of life, as well as their families, friends and caregivers. Autism can be defined by certain behaviours which come in combinations and in varying degrees of intensity. The symptoms often include difficulties with social interaction, communication, and behaviour. International studies suggest that autism affects six out of every 1,000 children.

Recent progress on autism is evident in many fields, from research and care to education and policy. However, we still require enhanced knowledge of the condition and greater understanding of the most effective treatments and interventions. This is why the Government of Canada continues to work with partners and stakeholders and invest in activities which support a stronger autism evidence base to enhance our understanding of this condition.

Government of Canada initiatives continue to improve autism knowledge and awareness. For example, the Government recently announced the establishment of a National Chair in Autism Research and Intervention, jointly funded with the Government of British Columbia and supported by $1 million in federal funding over five years. The Public Health Agency of Canada is currently working with experts in health surveillance to identify what could be done in Canada in this area. In addition, the Government of Canada has supported autism knowledge through the Canadian Institutes of Health Research, which has spent and committed over $26 million on autism-related research since 2000.

Please join me in marking this very important day.

Tony Clement
Minister of Health
Government of Canada

For more information on Autism Spectrum Disorder go to Health Canada's Autism Web section

[Andrew Kavchak]

I'm very sorry to hear Amber about the idiotic correspondence you received from the Revenue Canada Agency.

The irony of a government which has done nothing to ensure reasonable access to treatment under Medicare having the audacity the day after World Autism Awareness Day to ask about the expected date of "recovery" for purposes of minimizing as much as possible any tax break is beyond description.

[Amber Armstrong]

Has anyone had any issues with the form T2201- the disability certificate. I had my dr fill out the form and I mailed it in a few months ago. Today I got a form asking a dozen questions about my son's condition as well as his expected date of recovery. Does the government not know what Autism is??????

Anyone else go through this?

amber 81 @ gmail . com

[Andrew Kavchak]

Yesterday was the first UN World Autism Awareness Day. Below is a collection of the statements and questions raised in the House of Commons and the Senate yesterday. Thank you Mr. Scott and Senator Munson for your efforts in trying to help Canadians affected by autism!

________________________
House of Commons

April 2, 2008

Statements by Members

UN World Autism Awareness Day

Mr. Mike Lake (Edmonton—Mill Woods—Beaumont, CPC):

Mr. Speaker, 10 years ago yesterday, my wife and I received word from doctors that our two and a half year old son, Jaden, had autism.

Today we mark the first ever UN World Autism Awareness Day. It is a day not only to discuss the many challenges that accompany this mysterious disorder, but to share and celebrate the truly unique and authentic individuals who have autism.

Jaden may not be a star hockey player or a straight A student, but he and other individuals with autism are remarkable in ways that we tend to undervalue in our goal oriented society.

Jaden does not know how to hate. He can be aggressive, but is never intentionally mean, and he does not know when other kids are being mean to him. He never gossips or holds a grudge.

He is 100% genuine and honest with his feelings, something that is particularly difficult when he is sad, because usually he is unable to communicate the reason for his tears.

Almost every single person in Jaden's life would say that they get more from him than he takes from them. We should all hope to one day achieve that kind of impact through our own lives.
_____________________

World Autism Awareness Day

Hon. Andy Scott (Fredericton, Lib.):

Mr. Speaker, I, too, rise today to acknowledge and celebrate the new UN resolution marking today, April 2, the first annual World Autism Awareness Day.

It has been more than a year and a half since I introduced my private member's motion calling for evidence based standards, innovative funding arrangements for diagnosis, treatment and research and a national surveillance program.

The motion was adopted in good faith and supported by the government. It is therefore regrettable that the Conservative government has made no mention of a national autism strategy in its past two budgets.

This is about improving the lives of hundreds of Canadian children and families. I call on the government to work with the provinces to take concrete action and make the necessary investments to finally implement a national autism strategy.
_______________________

Debates of the Senate (Hansard)

Wednesday, April 2, 2008

Senators' Statements

World Autism Awareness Day

Hon. Jim Munson: Honourable senators, April 2 has been declared World Autism Awareness Day by the United Nations. There was consensus among 192 UN representatives that there is a need to draw the attention of people across the globe to this neurological disorder that is affecting more and more families. I am speaking today to inform my honourable colleagues that I intend to introduce a private member's bill so that Canada will also recognize April 2 as World Autism Awareness Day.

I remind honourable senators that autism now affects as many as 1 in 200 families in this country. The Centers for Disease Control and Prevention in the United States has called autism a national health crisis whose cause and cure remain unknown. Autism affects more children than pediatric cancer, diabetes and AIDS combined.

As honourable senators may remember, the Standing Senate Committee on Social Affairs, Science and Technology conducted a study on autism. The title of our report, Pay Now or Pay Later, Autism Families in Crisis, spoke volumes. Intensive Behavioural Intervention, a treatment that has proven to be effective for many people with autism, can cost more than $50,000 a year. However, providing no treatment and not spending any money would have huge costs as well. People with autism who receive little or no treatment often require full-time care or institutionalization.

I am fully aware that by declaring April 2 World Autism Awareness Day, we will not fix things overnight. Families will have to struggle with the demanding and difficult task of providing, finding and buying care for their children with autism. Parents will still have to worry about the future, about the day when they will be gone, about who will care for their child with autism.

Declaring April 2 World Autism Awareness Day is one small step in a journey to see that all people with autism and their families have the care and support they need. I hope that all honourable senators will support me when I table the bill that will provide for Canada's recognition of April 2 as World Autism Awareness Day so that we can take that small step on behalf of all Canadians.

I draw the attention of honourable senators to a young man who, as I speak, is walking across the country. Let us remember Terry Fox when he took the first step from a harbour in St. John's, Newfoundland. Some of those steps were lost along the way, and no one paid any attention to him in certain spots across this country; but as he walked, people did pay attention. There is now another young man whose name is Jonathan Howard. He is a young man who has set out from St. John's, Newfoundland, and intends to run across this country — and he will do it — to raise awareness about autism. He plans to arrive in Victoria on November 21.

If I can put a plug in for Jonathan Howard, honourable senators can visit him at his website at runthedream.ca. Who knows, maybe Jonathan Howard will be our next Terry Fox.

______________

Question Period

Finance

Proposed Registered Disability Savings Plan

Hon. Jim Munson: My question is directed to the Leader of the Government in the Senate. Under Senators' Statements I spoke about World Autism Awareness Day. I have recently returned from a news conference where members of the NDP and the Bloc Québécois participated, as well as MPs Mike Lake and Steven Fletcher of the Conservative Party. We still need answers on this important non-partisan issue.

My question comes directly from a father of a child with autism. He says, in the budget

Minister Flaherty announced the creation of a new tax sheltered savings account. However, in the last budget over a year ago, they announced the creation of a registered disability savings account that was supposed to be available in 2008. My wife and I, and many other parents across Canada were happy to hear of the disability savings plan and started to save up for it to invest on January 2, 2008. However, I have contacted two financial institutions who told me that the plans will NOT be available until the end of the year at the earliest because of footdragging at the Department of Finance on the technical details and regulations necessary to launch the plans and make them available to the public.

Would you please consider asking Senator LeBreton, what is the status of the Registered Disability Savings Plan and when do they expect it to become available, and whether it makes sense to try to duplicate something that they can't even seem to be able to give birth to in the first place?

Hon. Marjory LeBreton (Leader of the Government and Secretary of State (Seniors)): Honourable senators, the honourable senator is to be commended for his efforts today. This issue is indeed nonpartisan. We have members of our own caucus, as he knows and has mentioned, who are parents of autistic children. Over the last few weeks, CNN has given a great deal of attention to the severity of the issue, its complexity and the puzzlement as to exactly what causes autism.

With regard to the specific question from the father, he asked a valid question, and I will approach my colleague, the Minister of Finance, to find out the exact status of this program.

Senator Munson: I thank the leader and I appreciate that response.

_______________________

Health

National Strategy for Autism

Hon. Jim Munson: Honourable senators, I have a supplementary question. The government leader is a persuasive minister, and I would ask her to try to persuade Minister Tony Clement to do more. In her answer to Senator St. Germain a few weeks ago, she talked about what the government has done in terms of an autism research chair at Simon Fraser, which is laudable. She also said that through research and knowledge, the researchers will work with the provinces and territories to share best practices. She said that the federal government is taking action. When she talks about sharing best practices, researchers, provinces and territories, the time is opportune for the federal government to bring these parties together. As the leader of the government knows, in our bipartisan report with Senator Keon, we are looking for a national strategy. One way to open this door is for the minister to bring them into the room to work out best practices, which, even at this level, is important in research.

Hon. Marjory LeBreton (Leader of the Government and Secretary of State (Seniors)): I believe that Minister Clement and his provincial and territorial counterparts have discussed the issue. Whether it was the specific topic I am not aware of, but I will provide the honourable senator's suggestion to the minister and encourage him to do everything he can, working with provincial and territorial counterparts, to move this issue along and address this serious situation that many families in this country face.

[Isaac]

Hello Everyone,

Chalk one up for the good guys! A mother of a child afflicted with autism has won a battle to get autism treatment covered by health insurance in South Carolina. The article is very good (highly recommended … click on the link below to read).

–> http://tinyurl.com/25a8u8

Do keep in mind, when reading the piece, that the excuse used by U.S. health insurance companies to deny autism treatment coverage is, in fact, "Made in Canada," (in British Columbia, specifically) by the B.C. Office of Health Technology Assessment, at the CHSPR at U.B.C (Centre for Health Services Policy Research). Their so-called autism treatment research — made specially to defend government in court — was thrown out of B.C. Supreme Court as obviously biased in nature and of minimal value (see the Auton 2000 ruling; also, 'Science for Sale in the Autism Wars' covers the whole saga). Always up for a challenge, senior Ontario and Ottawa lawyers re-packaged the "experimental" theme authored by Canadian health policy academics and introduced it as new evidence at the Supreme Court of Canada Auton hearing in 2004 (i.e., they threw the same **** at the wall, as lawyers do, to see if it would stick). Based on this junk science, the S.C.C., stunningly, ruled that intensive behavioral treatment is "novel and emergent" and the case was tragically lost.

That’s just some quick background to this excellent article, so you know the headwaters from whence the toxic river flows.

Isaac

[Mike & Jean]

Today is "World Autism Day" and lots of organizations and individuals are participating in varous ways. Senator Jim Munson is holding a press conference this morning on parliament hill calling on the federal government to recognize April 2nd as World Autism Day. He plans to introduce a Private Member's Bill in the Senate to ensure that Canada officially recognized Worl Autism Day.

As it happens, another Canadian from Ontario, Toronto to be precise has joined the "Medicare for Autism Now!" initiative. She is Deborah Coyne. Deborah has spent her life engaged in public policy work. She is a lawyer, university professor, constitutional activist, public servant, wrtier, small businessperson and the mother of two childre, one of whom is on the autism spectrum. She has often been at the centre of the great public debates of our times -she became a leading figure actively engaged in the constitutional debates that unfolded involving the Meech Lake Accord and the referendum on the Charlottetown Accord. She is currently a policy analyst with an international consulting practice. She will also be one of the speakers at our "Medicare for Autism Now!" event on Saturday, April, 19th in Oakville.

Deborah has written a paper-Autism on the National Agenda. You can access it by going to her blog: http://www.canadianswithoutborders.blogspot.com

It is long, but very worthwhile reading. She nails two key points: 1) There is no constitutional barrier to a national autism funding arrangement, the Canada Health Act can certainly be amended, and 2) the main impediment is POLITICAL WILL….

Have a read…and welcome to the "Medicare for Autism Now!" team, Ms. Coyne

[Mike & Jean]

Today is "World Autism Day" and lots of organizations and individuals are participating in varous ways. Senator Jim Munson is holding a press conference this morning on parliament hill calling on the federal government to recognize April 2nd as World Autism Day. He plans to introduce a Private Member's Bill in the Senate to ensure that Canada officially recognized Worl Autism Day.

As it happens, another Canadian from Ontario, Toronto to be precise has joined the "Medicare for Autism Now!" initiative. She is Deborah Coyne. Deborah has spent her life engaged in public policy work. She is a lawyer, university professor, constitutional activist, public servant, wrtier, small businessperson and the mother of two childre, one of whom is on the autism spectrum. She has often been at the centre of the great public debates of our times -she became a leading figure actively engaged in the constitutional debates that unfolded involving the Meech Lake Accord and the referendum on the Charlottetown Accord. She is currently a policy analyst with an international consulting practice. She will also be one of the speakers at our "Medicare for Autism Now!" event on Saturday, April, 19th in Oakville.

Deborah has written a paper-Autism on the National Agenda. You can access it by going to her blog: http://www.canadianswithoutborders.blogspot.com

It is long, but very worthwhile reading. She nails two key points: 1) There is no constitutional barrier to a national autism funding arrangement, the Canada Health Act can certainly be amended, and 2) the main impediment is POLITICAL WILL….

Have a read…and welcome to the "Medicare for Autism Now!" team, Ms. Coyne

[Andrew Kavchak]

Release

For Immediate Release

SENATOR JIM MUNSON CALLS FOR THE DESIGNATION OF APRIL 2 AS WORLD AUTISM DAY

OTTAWA, April 2, 2008 – The Honourable Jim Munson (Ottawa-Rideau Canal) joins several members of Canada’s Parliament to call on the Government of Canada to recognize April 2 as World Autism Day. In 2007, the United Nations officially designated this important day in order to draw attention to a neurological disorder affecting an increasing amount of families across the world each year.

Senator Munson plans to introduce a Private Member’s Bill in the Senate of Canada to ensure that Canada officially recognizes World Autism Day. “This is not a partisan initiative; it is in fact the continuation of the efforts of members of all parties who want to tell the families of autistic children that someone on Parliament Hill cares. We want them to know that Canada recognizes the toll autism can have on their children and their families.”

Senator Munson launched the Senate Inquiry into the treatment of autism in Canada. This resulted in the publication of the report of the Senate Committee on Social Affairs, Science and Technology entitled Pay Now or Pay Later. Follow this link to view the report: http://www.parl.gc.ca/39/1/parlbus/commbus/senate/com-e/soci-e/rep-e/repfinmar07-e.htm

– 30 –

For more information, please contact:

The Honourable Jim Munson
Senator (Ottawa – Rideau Canal)
Tel: (613) 947-2504

[Andrew Kavchak]

Happy World Autism Awareness Day!

This morning I got off the bus downtown to go to work and the first person I saw was Shawn Murphy, MP, the gentleman who previously tabled a Private Members' Bill calling for a National Autism Strategy. So I approached him and asked him if he would be making a statement in the House of Commons today or something. He told me that several MPs have a press conference scheduled for 1pm today. Hopefully it will be something interesting and carried live on the news channels.

[Mike & Jean]

Hello all,

Just a reminder to get your registrations in as soon as possible for the ASBC presentation of Dr. James Mulick on April 19th.

The info has been posted before but you simply go to the ASBC web-site at http://www.autismbc.ca and download the information brochure/registration form. The conference information is down near the bottom of the home-page.

Not that you need any further encouragement to attend this important and informative event but we are pleased to advise you that we have received confirmation that the registration fee is an acceptable expense within the parameters of your Autism Funding from MCFD.

Hopefully we will see you on April 19th.

Regards, Michael and Jean

[Author]

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