[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

[Justin Himmelright]

New additions to the Autism Petition Website

The Autism Petition website (www.canadaautism.com) has added additional downloadable resources including email distribution lists for all MPs and links to MPs and Senators who are supporting us. We have also added links to volunteers in various ridings who will be able to provide information and answer questions.

We need contributions of lobbying materials and volunteers. If you have something you think might be useful for others to use, email to me and I will post it on the site. If you have an idea or something that you think would help, let me know and we can develop it and add it to the site. If you are willing to volunteer to help in your riding, let me know.

IMPORTANT: WE ARE LOOKING FOR PEOPLE IN RIDINGS OUTSIDE BC. if you have friend or relative out of province who is willing to collect signatures anywhere in the country, please put them in touch with the site and ask them to contact us.

Please distribute the site to as many people as you think might be interested. We already have commitments from several organizations to distribute and advertise the site through their email lists. The more people we can get to visit the site the better.

[Andrew Kavchak]

Attention! Attention!

CTV's Canada AM is conducting a poll today on ABA funding for children with autism. Here is the link- please vote and pass this on.

http://www.ctv.ca/canadaam

[Andrew Kavchak]

Autism seminar offers advice
Windsor Star
Dec 6, 2004
Page: A3
Section: News
Edition: Final
Byline: Don Lajoie

Overwhelmed, under-supported and poorly informed.

That's the natural state of being for parents struggling with the challenges of raising autistic children, say Maureen Bennie and Joyce Lang, of the Autism Awareness Centre.

Bennie and Lang were in Windsor Saturday for a conference at the Hilton Hotel on living with autism. About 50 delegates took part in the seminars designed to help parents better understand and communicate with their kids.

"Parents are often overwhelmed when their child is diagnosed. They don't know where to turn. We're there to help," said Bennie, the mother of two autistic children.

DIFFERENCES HUGE

Bennie said the federal government should intervene at the provincial level because the differences in programs from province to province can be huge. For example, she said, a family with an autistic child in Alberta may get up to $25,000 a year to help pay for ongoing care and on-site therapy. But in Ontario, a family in similar circumstances may count on about $2,500.

"Why do people in Ontario get so much less? Why do people in British Columbia get less?" said Lang. "The problem is the kids have been underfunded in every province for so long that everyone is playing catch-up. But are the provinces putting money into the right areas?"

She said one in 200 Canadian children is affected by autism, an increase of 600 per cent in 10 years. Autism, which affects communication, social interaction and behaviour, is now considered the most common neurological disorder affecting children.

[Andrew Kavchak]

Positive outlook
Saskatoon StarPheonix
Dec 6, 2004
Page: B4
Section: Lifestyle
Edition: Final
Byline: Silas Polkinghorne

At just 17 years of age, Zack Murdock knows exactly what he wants to do with his life.

"I'd like to be dealing with kids with certain disabilities," said the Grade 12 student at Bishop Murray High School.

Murdock wants to work with children with autism, mental disabilities, as well as cerebral palsy, a condition that has affected Murdock.

"I feel that I can relate to them," said Murdock, who is also epileptic. "Growing up as a kid was difficult and challenging," he said.

Cerebral palsy partially paralyzed the left side of Murdock's body and restricted the use of his left arm and leg.

"I found it very difficult [growing up] because I wasn't like the other kids," Murdock explained. "I'm not going to be like you, I'm not going to be like the other person."

He also volunteers at with autistic kids at Autism Treatment Services in Saskatoon.

"I think that they're people that show the good in others," he said. "They're always filled with happiness and joy."

Each week he is partnered with a different child and they take part in activities like mini-golf, decorating t-shirts or making tortillas.

Mordock said more programs for kids with disabilities would have been helpful for him growing up.

He has his sights set on a career, and considers himself a romantic who wants to find that special someone.

But Murdock hasn't always had things figured out.

He began his high school career at Holy Cross, but he was having trouble both academically and socially.

"I felt I didn't belong," said Murdock.

He says switching schools changed his life. Murdock needed the support available from both staff and students at Bishop Murray, he said.

"This school has been a turning point in my life," Murdock said. "Everybody here deserves the opportunity to have respect," he added. "That's what I try to give."

Murdock said the school's zero tolerance policy helps make it a welcoming place.

His experience at Bishop Murray has given Murdock an optimistic, even inspiring outlook on life.

"I don't want to take happiness for granted. I don't want to lose one second," he said. "Life is a gift, and it's not worth wasting over being angry or upset."

Murdock also credits his stepfather, Garry Hamblin, for helping him through the tough times.

"He always pushed me to do the best I can do," he said.

Murdock hopes to enroll at SIAST after graduation and study child care.

[Andrew Kavchak]

Legislature responsible for social policy
Times Colonist, The (Victoria)
Dec 6, 2004 1:00
Page: A11
Section: Comment
Edition: Final
Byline: Eleonore Beyer

Re: "Treatment for autism not a right," Nov. 20.

B.C. Attorney General Geoff Plant is reported as stating that governments (and not courts) are clearly responsible for social policy decisions.

I beg to differ. Social policy decisions, as all other public policy decisions, are not the responsibility of any government, but rather of our legislative assemblies. Public policy is debated and legislated by our Canadian Parliament and our provincial legislatures. The role of government is to implement and enforce the legislation enacted by our elected lawmakers.

While it is true that usually the governing party holds the majority of seats in our legislative assemblies, and thereby wields considerable influence in the legislative process, it is not always so — there are minority governments. Also, our opposition parties and independent members of the legislature have an important role to play in the legislative process.

It is this division of power between an elected legislature on one hand and a government on the other that makes democracy work.

I find it very sad that our attorney general, the top adviser to government on law-related matters, either is not aware of this distinction or doesn't find it worth remembering.

Eleonore Beyer,

Victoria.

[Jenn Ralph]

This was the editorial in the Nov 30th edition of the medical post: (www.medicalpost.com for more info). I also noticed that there were 3 articles/letters published today in various newspapers (Times Colonist, Star Phoenix, and Windsor Star) re: autism, but i can only see the first few lines of each article (I don't want to pay $5 for each article on line!). Does anyone know how to read them online without paying, or can anyone post them? – Jenn.

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November 30, 2004 Volume 40 Issue 45
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OPINIONS / OTTAWA BYLINE

OPED: Legally correct court decision begs questions about morality

By Ken Pole

The Supreme Court of Canada's refusal to force public health insurance coverage of autism therapy raises fundamental questions about medicare's sustainability.

At issue was an appeal by the British Columbia government against lower court rulings in favour of four children who have been receiving a specific type of applied behavioural therapy (ABT). Developed by an American research psychologist, it costs up to $60,000 annually, and although a trial judge concluded in 2000 that it may yield "significant results," it is not universally successful.

Written by Chief Justice Beverley McLachlin and concurred in by the six other benchers, the high court ruling noted the cause and cure of autism "remain unknown." (A couple of days earlier, a study published in Annals of Neurology posited a link with an overactive immune system, which researchers say causes chronic inflammation and apparent brain damage.)

Despite the expense—including several therapies already publicly insured to some degree—the families at the centre of the case have been paying for much of the therapy. After lobbying unsuccessfully for full coverage, they sued the government in 1995.

Four years later, the government, acknowledging the importance of early intervention, announced an autism "action plan" but said the needs of autistic children had to be balanced with those of others. By trial time, that initiative had fallen afoul of budget cuts and bureaucratic rearrangement.

The trial judge eventually concluded that ABT was "medically necessary" and that denying it to autistic children while providing services to others contravened the Charter of Rights and Freedoms.

She said it undermined the "primary objective" of medicare, specifically the notion of "universality," and said "the only accommodation possible is funding for effective treatment." She directed the government to fund early therapy for autistic children but said it was up to the government, based on professional advice, to determine what was appropriate.

The province appealed, not only because of the anticipated cost of insuring services for some 2,500 autistic children, but also because of the prospect of "copycat" suits on behalf of others with special needs.

The B.C. appeal court agreed there was discrimination, adding that the government's position had created a "socially constructed handicap" that aggravated the families' financial burden. That set the stage for the final appeal.

Justice McLachlin expressed sympathy for the autistic children and their families. "However, the issue before us is not what the public health system should provide, which is a matter for Parliament and the legislature," she wrote. "The issue is rather whether the B.C. government's failure to fund these services under the health plan amounted to an unequal and discriminatory denial of benefits."

Over-ruling the lower courts, she called the treatment advocated by the families an "emerging technology" (it's been around for nearly two decades), and said it is not part of the "core, physician-delivered services" provided for under the Canada Health Act.

In reality, the Supreme Court had little choice in the matter, given the way the Canada Health Act and supporting provincial statutes have been written by our legislators. McLachlin noted that "all that is conferred is core funding for services delivered by medical practitioners and, at a province's discretion, funding or partial funding for non-core services.

While "it is not open to Parliament or a legislature to enact a law whose policy objectives and provisions single out a disadvantaged group for inferior treatment," she continued, a legislature "is free to target the social programs it wishes to fund."

The federal Liberals' health plank in their summer re-election campaign included a splinter proposal to protect Canadians against "catastrophic" drug costs. Can the same argument not be be made for families who face financial ruin due to other health issues?

It has been said the ruling makes "second-class" citizens of the autistic children and their families and, more fundamentally, undermines the validity of the Charter of Rights and Freedoms.

It also has been suggested that we simply cannot afford to have truly universal medicare. In an era of $9-billion federal surpluses, and given that we evidently hold medicare so dear, can we afford not to?

Ken Pole is an Ottawa journalist. E-mail him at ken.pole@sympatico.ca.

[Barbara Rodrigues]

Hi Guys:

The IDEA's act in the US is now even better for the kids – below is the link to a press release -He had some great things to say about kids with disabilities and about how they can learn – expectations need to be there – and how the education system needs to help.

http://www.whitehouse.gov/news/releases/2004/12/20041203-6.html

We really need to get those petitions in and we need to create the kind of laws for our kids and Government has the power to do it – we have to have the power to push them into doing it. The only power we have right now is in our voices – for our kids – that comes in the form of petitions, letters and lobbying.

Barbara

[Andrew Kavchak]

Congratulations to those who delivered the autism petition to James Lunney MP. The following passage appears from the House of Commons Hansard transcripts for Friday, December 3, 2004.

Mr. James Lunney (Nanaimo—Alberni, CPC): Mr. Speaker, the second petition deals with the subject of autism. The petitioners, again largely from my riding, are calling on Parliament to recognize that families with children suffering from autism spectrum disorder are greatly affected and highly vulnerable. They talk about the alarming increase in the diagnosis and presence of autism in our population, currently at about 1 in 195 children. They draw attention to the therapy which has been made available largely through the United States, intensive behavioural intervention, IBI, and also applied behavioural analysis. These programs are taught in the United States and currently not taught in Canada. They are quite expensive. The petitioners are calling for these programs to be taught and to be available in Canada.

[Andrew Kavchak]

Hi Folks,
Things are picking up on the litigation front again, albeit with a different approach. Please note the reference to the petition at the end of the news story.
Andrew (Ottawa)

Sunday, December 5th, 2004
Ontario parents to launch new autism lawsuit
Mary Nersessian, Mary Nersessian, Mary Nersessian, CTV.ca News Staff

There is a glimmer of hope for families with autistic children who were devastated by the Supreme Court's recent decision ruling that provinces are not obliged to fund treatments not covered by the Canada Health Act.

Canadian families with autistic children plan to announce a new legal challenge arguing that an expensive treatment is an educational necessity, not a medical one, experts say.

Now that the ruling has been announced, the door is open for a new lawsuit to be launched, one that could argue that Applied Behavioural Analysis should be funded by the educational system as it is in the United States, experts say.

"The Canada Health Act and the relevant British Columbia legislation do not promise that any Canadian will receive funding for all medically required treatment," Chief Justice Beverley McLachlin wrote in the Supreme Court's decision last month.

"All that is conferred is core funding for services delivered by medical practitioners and, at the province's discretion, funding or partial funding for non-core services."

The ruling is in response to the argument that the treatment was a medical necessity. But south of the border, the treatment is handled under federal jurisdiction and provided by the school boards, says Toronto lawyer David Baker, who specializes in education and disability law.

"My understanding is that it is working very, very well," Baker says, "People in the United States can't understand the problems here."

Baker and some of the parents will hold a press conference Monday at Queen's Park to announce their action.

Baker says it has even become difficult to retained qualified ABA practitioners in Canada. For the Canadians courts to agree that the treatment should be handled by the education systems, "It will be necessary to demonstrate to the court that it is a necessary, essential part of education for some," Baker says.

"The government and school boards are fully aware that this is implemented through the education system in the States," says Taline Sagharian, the Mississauga mother of a young boy with autism.
"It's inevitable that it's got to happen one day."

She says families like hers have been unable to get answers for years.

"We're used to being bounced around from one ministry to another," she says, "And no one took any kind of initiative to look at seriously implementing this in the education system."

Sagharian says there is a public misconception that ABA is a medical treatment.

"When they hear treatment, they think it is being delivered by people in white coats and stethoscopes," she says.

She says her son Christopher, who is almost eight, has learned more in the past year than he has ever learned before.

She credits his dramatic progress to the specialized school where he has been receiving intensive ABA treatment over the past year.

"He's a totally different kid," Sagharian says, "I've seen him reach a level that I never thought would be possible, he's participating more in school, more with family, he's paying attention to our conversations, and ABA is helping him to get there."

But it comes at a high price. Annual tuition for his school is $55,000 and tuition for such schools ranges from $40,000 to $70,000. She is hopeful.

"Although this decision was a blow to the cause, what remains clear is that the battle is far from being over and perhaps it provides us the opportunity to explore a different perspective on the issue," she says.

But Baker warns that a new lawsuit could take as much as five years to reach its culmination.

Another legal expert, Dianne Pothier, says she is not holding out for a new successful lawsuit.

Pothier, who was counsel for the Women's Legal Education and Action Fund for Women (LEAF) and The Disabled Women's Network Canada (DAWN) in this case, and is professor of constitutional and public law at Dalhousie Law School, says that change may have to come through the political system and through lobby groups.

The ruling didn't come as a surprise to Pothier. "I always thought it was an uphill battle in some ways," Pothier said.

"What we tried to get the court to deal with was that the health care system is geared to the typical needs of the able-bodied, and they completely ignored that point."

Pothier says, "[The court] is simply not saying it's a constitutional requirement and it certainly leaves it open to lobbying."

But even if funding is provided, there isn't the infrastructure right now to handle ABA treatment in Canadian school boards, says Dr. Joel Hundert, a psychologist who has a specialty in working with children with autism; is a certified behaviour analyst, and director of The Behaviour Institute.

There aren't the post-secondary programs in place to train practitioners who would act as consultants in the schools, he says.

Dr. Hundert says there probably only about 12 Behaviour Analyst Certification Board-certified behaviour analysts in Ontario.

"It's the only treatment approach that has been shown to be effective," he says.

"Without someone overseeing it, it's impossible to do it well."

Less than a week after the ruling, the Nova Scotia announced a $4-million program to help children with autism.

And just days after the ruling, parents of children with autism presented a petition to MPs asking the Parliament to amend the Canada Health Act to include the therapy.

"It's possible that the decision from the highest court in Canada signifies the closing of an old chapter for autism. We have no choice now but to move on to a new chapter," Sagharian says.

[Nancy Walton]

WHERE ELSE DO WE NEED HELP?????

We have now sent in over 2300 signatures to Ottawa. Congratulations to Vancouver Island, Langley, White Rock and Surrey central where many people have gotten petitions sent in. Petitions have been given to 8 MPs in the lower mainland, one in the interior and 3 on the island. There are 7 MP's who have received petitions in Ontario and one in Manitoba.

We are well connected in BC thanks to the featbc chat board. WE NEED to reach out to relatives and friends accross the country and ask for help. I have been reluctant to ask for help in the past, but remember, this isn't just for your own child. This is for all autistic children in Canada.

Everyone who has gathered signatures has given me feedback that anyone they asked was willing to sign. I really believe that most Canadians want our children to recieve treatment. BUT how will the government know this??? We have to bring signatures to the government to show them.

If you haven't already sent in a petition, please take time over the next couple of weeks to get signatures. E-mail me if you don't know who to send them to. AND ask at least one relative or friend somewhere else in Canada to gather 25 signatures.

Remember to e-mail me if you have sent in signatures.

Thanks to all those who have helped in this effort so far.

Nancy Walton

[Author]

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