[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

[Barbara Rodrigues]

So true Bev Sharpe. And thank you for your years of dedication in the fight and advocacy for our kids for medically necessary ABA treatment.

Barbara Rodrigues

[Bev Sharpe]

8 years ago today, November 19, 2004 the Auton decision was rendered by the Supreme Court of Canada.

This judgment upheld the findings of fact from the BC Supreme Court that ABA Treatment was medically-necessary. The judgement failed our children by not ordering the provinces to pay for this treatment.
The serious flaw in the Supreme Court of Canada judgement was that this court, the highest court in the land, did not wanted to force the provinces how to spend their health care dollars.

What Auton did was put a spotlight on the inhumane exclusion of our autistic children from Medicare.

What can you do?

Continue your child’s ABA treatment program – it is the single treatment with the science , data and efficacy behind it – it works.

Join Medicare for Autism Now! Their website: medicareforautismnow.org
Your autistic child is a Canadian citizen who is worthy of their core treatment need for ABA and worthy of being included in Medicare.

Read and understand the Auton and Hewko decisions. These decisions outline critical facts which you can use to make good decisions for your children, for their treatment both at home and in school.

Thank you to Dr. Sabrina Freeman for founding Families for Early Autism Treatment and for your tireless work on both the Auton and Hewko cases.
Thank you to each and every family who courageously carries on a treatment program for their child.

[Jennifer Coulombe]

I moved back to Canada in aug and my five year old son finally has a diagnosis here. He is turning six at the end of january I have been told that the funding will decrease and there is no scope for prepaying ahead of time for services. This is frustrating as the programs I am looking into now will not be effective if they are only for a few months. I was told I have the right to appeal so I sent an appeal letter to the autism funding people. Does anyone have any advice or experience with this?

[Andrew Kavchak]

Hi Folks,

From the opinon section of The Toronto Star's website: thestar.com
Published on Sunday November 11, 2012

How Canada is starting to tackle the autism crisis

By Senator Jim Munson

It’s almost 10 years since my eyes were first opened to autism and its daunting human and social implications. As I walked up to Parliament Hill one morning, I ran into a man peacefully protesting in front of the Centennial Flame. He and his wife had the heavy burden of caring for an autistic child, a son who could not even make eye contact with them. The boy was isolated as a result of his symptoms, and so too were they. The emotional and financial weight was too much.

The desperation that prompted him to make a protest sign and then stand on Parliament Hill that day was a kind of desperation I had never seen before. The intensity was etched in his eyes. He was hurting.

But he was also forthcoming and candid. And he certainly made his point with at least one person he met that morning.

I decided then and there that I had to learn more about autism and how, as a parliamentarian, I could make a positive difference in the lives of the many Canadians living with it.

I eventually found allies, but it wasn’t easy to find senators and MPs who understood autism and the crisis it had become. There are so many issues parliamentarians must grapple with and this was another one. Besides, most thought it was a provincial issue. But with a little perseverance, I launched an inquiry in the Senate.

The idea of getting a grasp of autism issues caught on. The Senate standing committee on social affairs, science and technology undertook a comprehensive study on autism funding, and in 2007 released its final report. The title, Pay Now or Pay Later: Autism Families in Crisis, intimated the core finding that “governments must pay now for autism therapy, services and supports in order to obtain the greatest return on investment. Otherwise, they will pay later in terms of much higher costs in future years for welfare, social services and institutional care.”

The report presented a series of hard-hitting recommendations for addressing the autism crisis: Stable funding for therapy throughout the country. A nation-wide public awareness campaign. Research programs. A knowledge exchange centre.

Among them, our call for a comprehensive national autism spectrum disorder (ASD) strategy stirred the most compelling and enduring debate. The autism community continues to this day to advocate that a national strategy is the only moral and effective response to the autism crisis.

I am often asked, “Do you think the government will ever commit to a national strategy?” My answer is yes. In fact, we have been progressing toward this for many years.

Despite a paltry initial response to Pay Now or Pay Later’s recommendations, the government has in recent years introduced meaningful programs and measures: Financial savings vehicles for parents of children with disabilities. Funding for the Canadian Institutes of Health Research to build on autism-related research. The creation within the Public Health Agency of Canada of a national surveillance system.

It’s a start.

In the absence of a national strategy, other levels of government and non-governmental groups have been filling in the gaps. Across Canada, grassroots organizations are delivering necessary but otherwise unavailable services — from referrals to co-ordination of early diagnosis and treatment.

Five years ago, in the same year Pay Now or Pay Later issued its call for a national strategy, the estimated rate of Canadian children being diagnosed with autism was one in 150. Today, it’s one in 88 — and will continue to rise.

October was Autism Awareness Month and many of us have lately been giving extra thought to autism. Awareness-building activities have been taking place in schools, community centres and other places where we gather and learn.

Reflecting on what I have learned from the autism community over the past decade, I am especially hopeful. Even the humblest of efforts, like the protest of one man on the Hill, can lead to significant outcomes. The improvements we want to see in the lives of people touched by autism might not come as quickly or in precisely the forms we would expect, but we are making inroads. The system we are constantly enhancing to address the autism crisis is reaching the doors of our federal government. These doors must open wider to bring all stakeholders into the same room to build a national ASD strategy.

Senator Jim Munson, a Liberal, is a long-time advocate for autism issues. In October his private member’s bill, S-206, An Act Respecting World Autism Awareness Day, passed clause-by-clause consideration by the House of Commons standing committee on health and will soon become law.

[Bev Sharpe]

Important Supreme Court of Canada decision.

OTTAWA – The Supreme Court of Canada says a British Columbia school board discriminated against a severely learning disabled boy by not doing enough to give him the help he needed.

In their 9-0 ruling the judges sided with Rick Moore and his son Jeffrey, who is dyslexic.

They agreed with a 2005 British Columbia Human Rights Tribunal decision that found the North Vancouver school district discriminated against the boy by failing to accommodate his disability.

The B.C. Supreme Court overturned the tribunal ruling and that decision was upheld by the court of appeal.

The Supreme Court, however, overturned the lower courts, restored the finding of discrimination and awarded costs to Moore.

In the 15 years since the case began, Jeffrey was educated in an independent school and now works full-time as a plumber.

[Mike & Jean]

Today's announcement by the CIHR (Canadian Institute for Health Research) does not address what our children most urgently need – access to proven, (not novel treatment strategies), science-based autism treatment which is ABA.

It is rather timely that today, Medicare for Autism Now! released episode 9 in our web-series, "Medicare's Orphans"

This episode features, Lia Marinoiu, who lives in Scarborough, Ontario. Lia's brother, Simon is 21 years old, has severe autism and has never received ABA intervention. She describes how untreated autism has defined and limited not only her brother's life – but her's as well. Take a look at what "novel treatment strategies" will do. This is a very powerful and timely interview which I encourage you all to watch and share.

The CIHR and everyone on their payroll and in their back-pocket should watch and listen to what this courageous young woman and new voter has to say.

Watch it at: http://www.medicareforautismnow.org

[Andrew Kavchak]

Harper Government announces new research chair dedicated to autism treatment and care
Innovative research program to focus on mental health challenges facing Canadians with autism spectrum disorders

TORONTO, Nov. 5, 2012 /CNW/ – On behalf of the Honourable Leona Aglukkaq, Minister of Health, Parliamentary Secretary Dr. Colin Carrie, today announced a new research chair whose work will aim to improve the treatment and care of Canadians with autism spectrum disorders (ASD) throughout their lives. PS Carrie was joined by Mike Lake, Member of Parliament for Edmonton – Mill Woods – Beaumont. The chair is funded by the Harper Government in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, NeuroDevNet, and the Sinneave Family Foundation.

"Our Government is committed to helping Canadians maintain and improve their health." said PS Carrie. "That's why we are supporting research that will use innovative approaches to improve the health of Canadians who live with autism."

"Our Government understands the importance of working with organizations in the autism community and the role of the new research chair," added MP Lake. "These organizations provide a valuable link to Canadians affected by ASD and their families and they will be critically important to the success of the research program and implementation of the results."

Dr. Jonathan Weiss at York University is the recipient of the new Chair in Autism Spectrum Disorders (ASD) Treatment and Care Research Program. He and his team will examine why people with ASD are prone to develop mental health problems, evaluate novel treatment strategies to help youth and adults with ASD deal with these issues, as well as other stressful events like bullying, and find ways to improve access to care for all. To achieve these goals, they will work with people with autism, families, service providers, and government to share cutting edge research that will inform mental health care policy and practice across the country.

"The majority of people with autism will experience mental health problems at some point in their lives. Good mental health translates into better outcomes for these individuals and for their families, and to a reduced demand on our health and social systems, which benefits all Canadians," said Dr. Weiss. "Thanks to the support from CIHR and its partners, we look forward to conducting research that addresses this need."

"Individuals with ASD transitioning from the protection of the family and pediatric health and educational services face a huge gap in the continuum of care, and access to meaningful supports," says Dr. Dan Goldowitz, Scientific Director of NeuroDevNet. "NeuroDevNet is delighted to partner in supporting the work of Dr. Weiss because his research addresses these fundamental issues in a thoughtful and applied manner."

The Harper Government and its partners have committed $1M over five years to support the Chair. York University has also committed matching funds to the research chair announced today, along with its community partner, the Spectrum of Hope Autism Foundation. CIHR encourages institutions to collaborate in the support of the best health research in Canada.

"On behalf of York University, I would like to congratulate Dr. Weiss on being named the recipient of the new Chair in Autism Spectrum Disorders Treatment and Care Research Program," said Mamdouh Shoukri, President and Vice-Chancellor. "York's Faculty of Health is home to some of Canada's leading researchers, who work collaboratively to improve health promotion, disease prevention and health care in the community. I am proud of their commitment to bettering the health of the nation."

The Canadian Institutes of Health Research (CIHR) is the Government of Canada's health research investment agency. CIHR's mission is to create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened Canadian health care system. Composed of 13 Institutes, CIHR provides leadership and support to more than 14,100 health researchers and trainees across Canada.

Fact Sheet

Autism spectrum disorders
Autism spectrum disorders (ASD) are a group of developmental brain disorders with a wide range of symptoms, skills, and levels of impairment, or disability. A study by the National Epidemiological Database for the Study of Autism in Canada has found prevalence rates of 1 in 200 people to 1 in 300 people across Canada. There is a general agreement that the incidence of ASD is on the rise, but it remains undetermined if this increase is due solely to better diagnosis or other factors.

All children diagnosed with ASD demonstrate deficits in social interaction and verbal and nonverbal communication, as well as display repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences such as certain sounds or the way objects appear to them.

While there is no demonstrated single best treatment regime package for all children with ASD, it appears that they respond well to highly structured, specialized programs. It is generally agreed that early intervention is important.

New chair in ASD treatment and care research
The Harper Government is partnering with organizations in the autism community to fund a new Chair in Autism Spectrum Disorders Treatment and Care Research with the aim of improving the lives of Canadian children and adults with ASD and their families.

Project description
Dr. Jonathan Weiss, a researcher and assistant professor at York University, is the recipient of the new Chair in ASD. He and his team will study innovative approaches to expand treatment and care research to address mental health problems in Canadians with autism across the lifespan. They will examine why people with ASD are prone to develop mental health problems, evaluate novel treatment strategies to help youth and young adults with ASD deal with these issues, as well as other stressful events like bullying, and find ways to improve access to care for all. To achieve these goals, they will work with people with autism, families, services providers, and government to share cutting edge research that informs mental health care policy and practice across the country. This collaborative research will also have a lasting impact by fostering the next generation of Canadian autism researchers and clinicians.

Funding
The Harper Government and its partners have committed $1M over five years to support the Chair.

York University has also committed matching funds to the research announced today, along with its community partner, the Spectrum of Hope Autism Foundation. CIHR encourages institutions to collaborate in the support of the best health research in Canada.

Partners
Government of Canada:

Canadian Institutes of Health Research
Health Canada
NeuroDevNet
Partners from the Autism Community:

Autism Speaks Canada
Canadian Autism Spectrum Disorders Alliance
Sinneave Family Foundation
SOURCE: Canadian Institutes of Health Research

For further information:
Cailin Rodgers, Office of the Honourable Leona Aglukkaq, 613-957-0200
David Coulombe, Canadian Institutes of Health Research, 613-941-4563

[Andrew Kavchak]

Hi Folks,

Well, it looks like something is going to be announced by the federal government at York University (northern Toronto) on Monday.

Do you remember a couple of years ago the Tories announced a five point autism plan on the eve of one of our demonstrations on the Hill? The five point plan (if creating another autism website can be called a "plan") included the funding of a research chair at a Canadian university. If I recall correctly, a million bucks was put aside for it and the designated university was Simon Fraser. Regrettably, it seemed that no one applied or no one was qualified (I heard that a candidate ended up going to the U.S. instead) and if I remember correctly, the money lapsed. So much for the plan.

However, now they will be announcing something along the lines of "autism treatment and care". Could this be another "research chair"? We'll just have to wait and see…

CIHR
Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, NeuroDevNet, the Sinneave Family Foundation
and

Dr. Colin Carrie, Member of Parliament for Oshawa and Parliamentary Secretary to the Minister of Health

Mr. Mike Lake, Member of Parliament for Edmonton – Mill Woods – Beaumont

are pleased to invite you to an announcement on

Autism Treatment and Care

Monday, November 5, 2012
9:00 a.m.

York University
4700 Keele Street
Toronto, Ontario

Life Sciences Building, Lobby
6 Thompson Road

RSVP by November 2, 2012 to Gabrièle Caza-Levert at Gabriele.Caza-Levert@cihr-irsc.gc.ca

[Andrew Kavchak]

Hi Again Folks,

Well, I think the World Autism Awareness Day Bill actually received Royal Assent today. If that is indeed the case, then by law, April 2 shall be known in Canada as "World Autism Awareness Day" and will give our community an opportunity to get some attention. If the Bill is indeed now law, then I believe it would be fitting and proper for as many members of our community as possible to send Senator Munson a message thanking him for his efforts.
You can find his email at http://www.parl.gc.ca and on his own website.

THANK YOU SENATOR MUNSON!!!
Andrew Kavchak (Ottawa)

Status of the Bill

S-206
AN ACT RESPECTING WORLD AUTISM AWARENESS DAY

Short Title
World Autism Awareness Day Act

Sponsor
Sen. Jim Munson

Last Stage Completed
Royal Assent (2012-11-01)

Text of the Bill available at: http://www.parl.gc.ca/content/hoc/Bills/411/Private/S-206/S-206_3/S-206_3.PDF

The Bill started off in the Senate last year.

Senate

First Reading
Introduction and First Reading
2011-10-04

Second Reading
2011-10-26

Referral to Committee
2011-10-26

Committee
STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY

Committee Report Presented
2011-11-24

Third Reading
2011-11-29

House of Commons

First Reading
2011-12-01

Second Reading and Referral to Committee
2012-06-20

Committee
STANDING COMMITTEE ON HEALTH

Committee Report Presented
2012-10-17

Report Stage

Concurrence at Report Stage
2012-10-23

Third Reading
2012-10-23

Senate
Royal Assent
Statutes of Canada: 2012, c. 21
2012-11-01

[Andrew Kavchak]

Hi again Folks,
This is actually rather astonishing. The committee reported back to the House after its clause by clause review (between second and third reading of the bill in the House) and made no recommendations for amendments. Given how much Mike Lake expressed opposition to the provisions of the Bill when it was first tabled in Parliament (e.g., one of his complaints was that the reference to the prevalence rate was not appropriate, even though the figures used were outdated compared to the latest from the CDC), I find it a heartwarming that Senator Munson's tenacity paid off!

House of Commons
Wednesday, October 17, 2012.
Hansard Debates

Committees of the House
Health

Mrs. Joy Smith (Kildonan—St. Paul, CPC):
Mr. Speaker, I have the honour to present, in both official languages, the 11th report of the Standing Committee on Health in relation to Bill S-206, An Act respecting World Autism Awareness Day. The committee has studied the bill and has decided to report the bill back to the House without amendment.

[Author]

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