[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

[Super Dad]

CBC's Riding Talk
=================

To all parents:

CBCNews.ca has created 308 blogs — one for each riding in Canada. Please go to the following ones, and click on "recommend" under our entries:

Vancouver Quadra:

http://www.cbc.ca/news/canadavotes/riding/302/ridingtalk.html

Fleetwood – Port Kells:

http://www.cbc.ca/news/canadavotes/riding/278/ridingtalk.html

If you want to say something about the candidates in your own riding, go to:

http://www.cbc.ca/news/canadavotes/ridingtalk/

It takes a couple of minutes to sign up as a contributor, but it's well worth the effort.

This is the time to speak your mind. Don't hold back!

Tony

[Brian McKinley]

BURNABY DOUGLAS CANDIDATES TRY TO ANSWER THE QUESTION

Bill Siksay, NDP, says:

Thank you for your recent email requesting my position on the development of a national strategy for the treatment of autism and to amend the Canada Health Act. My New Democrat colleagues and I voted in support of Bill C-304 in the last Parliament at second reading but unfortunately, the motion to refer the bill to a committee was defeated by a vote of 155 to 113.

My New Democrat colleagues and I continue to support the call on the federal government by groups such as Families for Early Autism Treatment of BC (FEAT of BC) to work with provinces and territories to incorporate autism treatment as a publicly funded service. The federal government must find a way to fund autism therapy or treatment. The NDP understands that families with autistic children are desperately in need of support and that publicly funded treatment opportunities must exist for all children. We must work with the provinces and territories to find a way to include autism therapy in the health care insurance plan of every province and territory.

You may also be interested in some of the other initiatives my NDP colleagues and I have called for to address other issues faced by families dealing with a member who has a disability:

a disability tax credit and medical expenses tax credit that is fully refundable for all people with disabilities-even those on low incomes;

reimbursable tax credits and a national plan of support for people with disabilities (as suggested by the Centre for Policy Alternatives);

expansion of a special opportunities grant program;
development of a labour market strategy for people with disabilities, including one for the federal workforce, and expanded measures to help employers make workplaces more accessible;

a global strategy for integration of people with disabilities into the labour market;
a commissioner's office to monitor federal compliance and advise Ministers about upcoming legislation and regulation;
implementation of long-standing recommendations for home care, prescriptions, and prosthetics;
national standards for people living with disabilities, uniform delivery system, and a single income support mechanism.

Please be assured of my ongoing support on this important issue. Thank you for providing me with an opportunity to respond to your concerns on this issue.

Bill Cunningham, Liberal:

The answer is yes. My wife has an adopted younger brother who suffers from autism, so I know first hand how it can affect a family as well as the benefits of treatment. It should be covered under the Canada Health Act.

Ronald Leung, Conservative:

In regards to your question on science based research for autism Mr. Leung's honest opinion is as follows:

Research for and assistance of medical diseases (not the enabling of addiction) is important to Ronald. Having his PhD in computational chemistry he is someone who supports the advancement of science in it potential to cure diseases, however, the question you posed is quite broad. Ronald feels that the type of research proposed must be carefully examined on case by case basis by the medical community in order to examine its merit before it receives federal funding. Those living with autism deserve a shrewd health care system that is not frivilous with its spending but one that is thorough and yields the best results in medical research. He also believes proper assistance for those suffering from the disease who cannot help themselves.

I sent a request for Mr. Leung to try to actually answer the question, and received this response:

Respectfully, it sounds like you know more about perspective treatments that are being developed by the scientific community than someone who is approaching the subject from a broad, or philosophical perspective. "Science-based" is a very broad term, and is open to many interpretations which is why he hesitates to give a blanket yes. The concept of using all available resources at our disposal to help those whose lives can be improved by medical science is a noble and worthwhile goal.

Ronald does look forward to learning more about these initiatives, in order to be able to give an informed and concrete opinion on the initiatives at that time.

I have not received an answer from the Green Party Candidate.

My dilemma is this: Do I vote for the guy who actually voted for a national autism strategy when given the chance, or do I vote for the guy who says he definitely will if given the chance. I definitely won't vote for the guy who doesn't appear to understand the question.

[Andrew Kavchak]

From cbc.ca:

Mothers of disabled children juggle work schedules: StatsCan

Last Updated: Thursday, September 25, 2008

The parents of three out of five children with disabilities said their added responsibilities affected employment, and it was mothers who overwhelmingly said they adjusted their hours, Statistics Canada reported Thursday of a 2006 survey.

When parents were asked whose employment was most affected, 64 per cent of the time it was the mother's. In 25 per cent of cases, both parents said they adjusted their hours, while fathers said they did eight per cent of the time.

Other family members adjusted their paid work in three per cent of cases.

About 38 per cent of parents said they worked fewer hours, and another 36 per cent of survey participants said they adjusted their work schedules to accommodate children whose everyday activities are limited because of a health-related condition or problem.

"Flexible work schedules or options to telework are helpful for parents who need to care for their child and at the same time continue working," the report said.

During the 2006 survey, about 200,000 Canadian families said they were coping with the challenges of caring for a child with disabilities.

Families stressed

The severity of a child's disability largely determined the challenge to families, the report said.

The trend occurred in many aspects of the parents' lives, such as employment, finances, leisure, personal time and the ability to find help and child care.

Most parents said they were satisfied with the type of child care they currently had, but 21 per cent said a child-care service had refused to provide care for their child.

Half of parents reported sometimes or always feeling they had less personal time because of the responsibilities of their disabled children.

About 45 per cent also said their daily stress ranged from quite a bit to extremely stressful, and 26 per cent reported their child's health condition as the main source of stress.

About one in four parents received help in balancing daily activities, most often to squeeze in some personal time, attend to family responsibilities or get chores done.

The most recent participation and activity limitation survey took place between November 2006 and February 2007.

[Andrew Kavchak]

From:
http://en.epochtimes.com/n2/canada/parents-lobby-swing-autism-fight-4717.html

Parents Lobby Swing Ridings in Autism Fight

By Joan Delaney

Epoch Times Staff Sep 24, 2008

Jack Witt, 4, working with an Applied Behavioural Analysis therapist. Parents of children with autism want the Canada Health Act amended so that costly ABA treatment can be covered by Medicare. (Louise Witt)

Parents of children with autism have been fighting over a decade to have costly treatment covered by Medicare. Now they are using strategic election lobbying in swing ridings to further their cause.

Activist group Medicare for Autism Now has launched a campaign called “The Two Percent Solution” in 14 swing ridings across the country where candidates won by two per cent or less. They are backing any candidate who publicly supports legislation to amend the Canada Health Act to include autism treatment.

Among the 14 constituencies is Parry Sound-Muskoka where federal Health Minister Tony Clement won by a mere 21 votes. Because these ridings are vulnerable, says the group, their initiative has a good chance of success.

“What we want to do is get some federal leadership on the issue of autism. No party has stepped up to the plate so we’ve got this non-partisan initiative going on in the upcoming federal election,” says Louise Witt, a parent activist and Surrey, B.C., campaign coordinator with the group.

Witt’s 4-year-old son, Jack, was diagnosed with the developmental disability when he was two. That’s when Witt became active.

“I didn’t have a political bone in my body until I realized the discrimination that children with autism were faced with in this country,” she says, calling these children “the orphans of the health care system.”

The group, along with Families for Early Autism Treatment (FEAT), has been calling on Ottawa to work with the provinces to set a national standard for autism treatment and amend the Canada Health Act so that an intensive treatment called Applied Behaviour Analysis (ABA) can be covered by Medicare.

“It’s expensive, and politicians talk a lot about that but they certainly don’t talk about how expensive in might be to treat a child who has cancer or diabetes, for example. So I don’t understand why it is acceptable to put a price tag on treatment for children with autism.”

ABA includes one-on-one time with trained professionals and is most effective when implemented between the ages of two and five. It has been shown to have a dramatic effect on children with autism, and Witt’s son is no exception.

“He never spoke, not a single word, until he went in ABA treatment and he spoke his very first word on his very first day of therapy. I knew right then that this was a powerful kind of treatment. He now talks in sentences, he wants to socialize with children, he can tell me what his wishes are, if he’s hungry or if he’s hurt, and if I didn’t see such amazing results I wouldn’t feel as passionate about this.”

However, the treatment can cost up to $60,000 a year, and there lies the rub — the provinces say it’s too expensive.

“It’s expensive, and politicians talk a lot about that but they certainly don’t talk about how expensive in might be to treat a child who has cancer or diabetes, for example. So I don’t understand why it is acceptable to put a price tag on treatment for children with autism,” Witt says.

Currently, a patchwork of autism services are provided through social services ministries across the country, with some, like B.C. and Alberta, paying a portion of ABA costs.

But it’s not enough, say parents, some of whom have more than one child with autism and have been crippled by debt as they struggle to provide what they believe is the best treatment for their children.

There have been several lawsuits in various provinces over the years in an effort to resolve the issue. In the landmark Auten case in British Columbia, the court declared that Early Intensive Behavioural Therapy or ABA is a “medically necessary” service and must be funded by the government.

However the province appealed, and the Supreme Court of Canada overturned that judgement in 2004.

While Health Minister Clement was not available for an interview for this story, the Ministry of Health has stated that the issue must be addressed by the provinces and territories since it’s their responsibility to deliver health care.

But after children with autism become non-coping adults who must be institutionalized, it’s the Ministry of Health that foots the bill. FEAT and others say it’s inconsistent that the ministry not be responsible for funding early treatment that can help these children before they become a drain on the system.

Liberal Senator Jim Munson, who supports a national strategy for autism treatment, was part of a Senate committee that produced a report earlier this year called “Pay Now or Pay Later: Autism Families in Crisis.” However, the report never went before Parliament for a vote.

Munson says it’s time politicians began “thinking outside the box” because families of children with autism are in crisis.

“The stress is so much on families that couples are splitting up, families are borrowing money that they can’t afford and mortgaging their homes to provide their children with treatment, and from my perspective as a Senator I find that tragic.”

Beverley Sharpe, a volunteer with Medicare for Autism Now, is keenly aware of what Munson means.

Soon after her child, Allison, was diagnosed with autism when she was almost three, Sharpe’s husband walked out. After doing extensive research, Sharpe was convinced that ABA was the only therapy that could help her daughter.

In order to meet the “huge bills” that started pouring in after she began the ABA treatment, Sharpe opened a line of credit, worked overtime, cashed in her RSPs, pawned anything of value and slept on her living room floor so that she could rent out her bedroom.

It all paid off, and Allison, now 14 and a grade 9 student, is able to look after herself and “has blossomed into a lovely member of the household.”

A litigant in the Auten case, Sharpe says two studies accepted by the court showed that it costs $1.1 million to pay for the long term care of untreated autistic individuals — 10 times the amount it costs to provide ABA treatment. A recent federal government study found that autism, which is on the rise, costs the economy about $1 billion a year.

“It’s a pretty lonely existence being an untreated autistic person and institutionalization is not a dignified existence. We do not have a society where we write people off for any disability except if you’re autistic,” says Sharpe.

But this issue is not peculiar to just Canada. According to FEAT’s website, parents in many countries are suing their local, state/provincial or federal governments to make ABA accessible to their children through public funding.

In the U.S., where most of the legal battles — and gains — have occurred, presidential hopefuls John McCain and Barack Obama have both said they support the Combating Autism Act which was unanimously passed and has almost $1 billion dollars going toward treatment and research.

In Canada, a private member’s bill tabled by NDP MP Shawn Murphy proposing amending the Health Act to ensure government funding for ABA was supported by both the Liberals and the NDP. But the Conservatives and the Bloc Quebecois voted it down.

However, Harold Doherty, whose son, Conor, suffers from autism, says the fact that so many MPs supported the bill bodes well for the future in advocating for the measures proposed by Murphy.

Thanks to the efforts of Doherty and other parents, New Brunswick now has funding for 20 hours per week of ABA treatment and provides training for autism support workers and teacher assistants. But without ABA being covered by Medicare, says Doherty, there’s always the risk that these hard-won gains could be lost at any time.

“We need serious commitments of funding for autism treatment across Canada and that’s what we’re not getting.”

For more information on the Two Percent Solution campaign, visit http://www.medicareforautismnow.org

Last Updated
Sep 24, 2008

[Super Dad]

To all Vancouver Quadra voters:

It looks like we now have a choice between two candidates:
1. Dan Grice (Green Party)
2. Bill Forst (NDP)

Deborah Meredith (Conservative) thinks helping a neglected minority is a "waste of time." Please let her know what you think:

<deborah.meredith@sauder.ubc.ca>
<info@deborahmeredith.ca>
<info@quadraconservatives.ca>
<jim@quadraconservatives.ca>

Joyce Murray (Liberal) has yet to give us an official response. When we interviewed her, she seemed clueless. We hope she has done more homework since the interview. May be you want to help her:

<info@joycemurray.ca>
<murrayj1@part.gc.ca?
<info@lpcbc.com>

Please remember: it doesn't matter if you are not Green Party or NDP fans. We need to be focussed on our #1 priority – JUSTICE for our children.

Tony

[Super Dad]

David Marley and Jean Lewis will be on the Bill Good Show on Thurs Oct 2 at 10:00am to 10:30am PST.

It can be heard on the CORUS radio network in Vancouver at 980AM.

It can be heard live streaming on the internet.

Tony

[Super Dad]

Medicare for Autism Now!

Status Update

We ask the simple question:

"If you are elected to the House of Commons on Oct. 14th, will you publicly commit to supporting legislation which will amend the Canada Health Act to include autism treatment?"

The Responses:

Ian Sutherland (Liberal – West Vancouver Sunshine Coast Sea-to-Sky Country, BC)
"YES, I am publicly commiting to support ammending the Canada Health Act to include Autism treatment in Medicare."

John Weston (Conservative – West Vancouver Sunshine Coast Sea-to-Sky Country, BC)
NO

Bill Forst (NDP – West Vancouver Sunshine Coast Sea-to-Sky Country, BC)
YES

Deborah Meredith (Conservative – Vancouver Quadra, BC)
NO. "waste of time"
Read more about Deborah's answers on Harold Doherty's blog:
http://autisminnb.blogspot.com/2008/09/deborah-meredith-conservative-candidate.html
http://autisminnb.blogspot.com/2008/09/deborah-meredith-clarifies-autism-issue.html

Dan Grice (Green – Vancouver Quadra, BC)
YES. "I will vote for the provision of Medicare coverage for science-based treatment of autism."

Bill Forst (NDP – Vancouver Quadra, BC)
"Unequivocal YES."

Sukh Dhaliwal (Liberal – Newton North Delta, BC)
YES

Nao Fernando (NDP – Fleetwood Port Kells, BC)
YES. "I am pleased to indicate my complete support for the inclusion of treatment for autism in Canada's national public health care system."

Brenda Locke (Liberal – Fleetwood Port Kells, BC)
"YES, if elected to the House of Commons on October 14 would support legislation that will amend the Canada Health Act to include autism treatment under Medicare."

Amy Collard (Green – Halton, Ont)
YES. "As your MP, I would strongly advocate for changes to the Canada Health Act to include not only autism treatment, but also to include diagnosis and prevention."

Lisa Raitt (Conservative – Halton, Ont)
NO.

Garth Turner (Liberal – Halton, Ont)
"YES, I will. And I have made this clear in the past."

Bonnie Brown (Liberal – Oakville, Ont)
NO. "Accordingly, regarding the CHA amendment you favour, I would have to respectfully disagree."

Michelle Bilek (NDP – Oakville, Ont)
YES

Paul Szabo (Liberal – Mississauga South, Ont)
YES. "I voted for it in the last Parliament and I will do it again."

Marnie Mellish (Green – Burlington, Ont)
"YES, I will. I have my Masters degree in Special Education and have taught special education classes in my youth. I fought long and hard for my students and got into trouble for helping parents organize to bring their concerns to the principal and the school board."

David Laird (NDP – Burlington, Ont)
"YES, organic brain disorders and developmental disorders are of increasing concern to many Canadians at a time when provincial governments are reducing supports in this vital area. I support increasing the scope of the Canada health act to include supporting individuals requiring specialized supports to achieve their maximum potential."

Mike Wallace (Conservative – Burlington, Ont)
NO.

Tony Clement (Conservative – Parry Sound-Muskoka, Ont)
NO.

Jamie McGarvey (Liberal – Parry Sound-Muskoka, Ont)
"YES I most certainly would. I am a huge supporter of early childhood education and I also recognize that education is an important part of the process with Autism Treatment. I believe putting the money up front in the early stages for treatment reduces costs later on."

Erich Jacoby-Hawkins (Green – Barrie, Ont)
"Short answer: YES."

Valerie Powell (Green – Simcoe North, Ont)
NO.

Alice Finnamore (NDP – Tobique Mactaquac)
"My answer to your question is an unqualified YES. I believe in science-based treatment of autism, and if elected will do everything I can to bring in coverage for ABA and IBI."

George Barron (NDP – West Nova, NS)
YES "In answer to your question; absolutely."

[Super Dad]

Regarding yesterday's "Medicare for Autism Now!" status update:

I apologize for mistakenly putting a YES for Dan Grice (Green – Vancouver Quadra). I was tired and was doing it blindly.

He did NOT answer our question at all. We are not talking about "public funding to provide skill training." We are talking about providing Medicare coverage for the medical treatment called ABA.

In fact, the notes that the interviewers sent to me today indicate that Dan Grice will likely be a "NO."

When you talk to candidates in your riding, please be very specific about the question, and demand a very precise answer.

Tony

[Peter Wong]

Tony,

Interesting idea. But it is a great one.

Thanks a lot.

Peter

In fact, most of my close friends in Vancouver are going to vote for the candidate supporting Medicare coverage for autism treatment.

[Super Dad]

Hi Peter,

If you have friends or relatives in one of the battleground ridings, you may want to consider "vote swapping":

http://www.cbc.ca/news/canadavotes/story/2008/09/17/vote-swapping.html

Tony

[Author]

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