[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: http://www.gravenhurstbanner.com/muskokanews/article/119257

Family split apart to care for autistic son

by Karen Longwell

Oct 15, 2008

Three-year-old Alec Nicholson runs in circles and yells in a high-pitched tone. At first glance, he looks like most three-year-olds but, in April of this year, Alec was diagnosed with a severe form of autism.

His family – or the “A-team,” as they call themselves – mother Andrea Nicholson, father Aaron Nicholson and brother Ayden, five, were split apart soon after Alec’s diagnosis.

Frustrated with their struggles, Andrea helped organize a meeting of the Medicare for Autism Now Society on Oct. 9 at the Royal Canadian Legion Branch 161 in Bracebridge. Medicare for Autism Now is a national campaign focused on initiating change to government policy to make autism treatment available for all Canadians.
The urgent need to get Alec early treatment sent Andrea outside of Bracebridge in search of a place without a long waiting list.

“If we leave it (the treatment) too long, it will be a lot less affective,” said Aaron. “He can become a productive member of society.”

The only scientifically proven treatment for autism is difficult to access in Bracebridge and in many places in Canada. If he stayed here, Alec would be placed on a waiting list for two or three years. That would be too long for Alec.

“There’s a window of opportunity for children with autism,” said Andrea, “before behaviours get locked in.”

The treatment is called Intensive Behavior Intervention or IBI. To be effective, IBI must be started for children with autism as early as possible, Andrea explained.

Before Alec turned two years old, the family knew something was different. He should have been talking but he wasn’t – he didn’t even say mom or dad, said Andrea. He also has repetitive behaviours like running back and forth and yelling.

In hindsight, there were signs that Alec was different. When Andrea was nursing, she noticed he didn’t make eye contact the way his brother had. “I didn’t want to compare my two boys,” she said. However, there were differences.
It took several months to get a diagnosis. “You can imagine the shock, the fear, the guilt and the many other emotions that just came sweeping over us at that time,” said Andrea. Since the diagnosis, there has been one appointment after another and long waiting lists for everything, she said.

Andrea took the opportunity to get treatment as quickly as possible, which means living with her husband’s family during the week. Aaron has a construction business in Bracebridge and needs to stay in this area to support the family financially.

Andrea doesn’t want to name the exact location where she gets treatment because the organization asked her not to. In this community, she is able to attend three autism parent support groups and get pre-IBI for her son. Alec started speech and occupational therapy right away, said Andrea.
The separation from friends and family is difficult. “We drive home to daddy on holidays – like Thanksgiving and any other chance we can get,” Andrea said. “We miss our friends and our daddy very much.” For now, though, the family has no other choice.

“I want to see change and I want to see change fast because it is wrong that we have to be split from our family and all of our support – our friends,” said Andrea. “I want to bring all family back together and be in my home.”

Medicare for Autism Now Society’s founding director, Jean Lewis, who is from Vancouver, has been an activist for autism for more than a decade. She started soon after she learned her son has a severe form of autism.

Lewis became involved with activism because she found, at that time, the treatment was not covered under the Canadian medical system. Things have improved; Andrea’s treatment for Alec is covered, but she should be able to access treatment closer to home.

“There is no reason why Andrea or anyone in this country should be separated from their families so their child can have their core health treatment attended to – not in this country,” said Lewis. “Andrea’s story is compelling but I could tell you hundreds of stories.”

Lewis said the Canadian government should act quickly because cases of autism are increasing. “This is a national crisis of epidemic proportions,” she said. “The centre for disease control is saying that autism is one in 150 and one in every 94 boys in North America.”
In order to make a change, the society is going to ridings where the federal election race was close and asking constituents to vote for candidates who support increased access to scientifically proven autism treatment. Lewis said the riding of Parry Sound-Muskoka is home to Canada’s health minister, which is another reason to come here and speak.

Locally, New Democratic Party candidate Jo-Anne Boulding and Liberal Jamie McGarvey said yes to supporting autism, according to Lewis.

The Medicare for Autism Now Society was incorporated in August 2008. It is a national coalition of non-partisan, parents, advocates, professionals and growing numbers of other fair-minded Canadians seeking Medicare coverage for effective, science-based autism treatment, otherwise known as IBI or in some areas ABA (applied behavior analysis).

[Andrew Kavchak]

To all those who organized and contributed to the Medicare for Autism Now Society's and FEATBC's efforts during this recent election campaign, I just wanted to say:

THANK YOU!!!

Regardles of the election outcome, the effort was significant and inspiring. The day will come when justice is done. Keep the faith!

[Louise Taylor]

In tomorrow's election, VOTE FOR AUTISM TREATMENT UNDER MEDICARE!

It is clear that a Harper Conservative government will do little to help our chldren recieve ABA treatment under our so-called universal healthcare system. To find out how to make your vote count on October 14th, click on the "Medicare for Autism Now" webiste and to to the "News" section to view the ads that ran coast-to-coast naming which candidates will support Medicare for Autism Now!

http://www.medicareforautismnow.org

For additional details on how to make your vote count, you can also refer to parent activist, Harold Doherty's blog, "Facing Autism in New Brunswick"; http://autisminnb.blogspot.com/

Make your vote a strategic one and vote "Yes" to "Medicare for Autism Now"!!!!!

[Dione Costanzo]

The last paragraph of my letter to Mr Warawa will be ammended to read

"Mr Warawa, please refocus your efforts in this area to help ensure all Canadians with autism and their families will be given the best chance possible. Hundreds of thousands of Canadians will thank you."

Apparently under any current policies they are only "children" up to age 6.

Dione

[Dione Costanzo]

Dear Mr. Warawa,

Right now, in Canada, the level of care that children with autism receive depends on where they live and the economic situation of their families.

Applied behavioral analysis therapy has decades of science-based research supporting its effectiveness in treating autism. The majority of children that receive this therapy as early intervention make significant advancements, and many even become indistinguishable from their peers.

The autism community has lobbied Provincial governments for years to fund this therapy for their children. Some provinces have insufficient funding which is not guaranteed. Some provinces have none.

As you know, hundreds of thousands of Canadians are affected by autism. Families are struggling and even mortgaging themselves into bankrupcy to pay for treatment. Many actually relocate to access some funding or get on a wait list. They do this because a best practices treatment exisits and their children will benefit from it.

Please do not use the misleading phrase "National Autism Strategy" to refer to the Conservative Governments' ineffective initiatives. A web site, a symposium that I was not allowed to attend (& still have not seen any information from) really has not helped my family at all. As you mentioned yourself, the only reasonable measures that might in future help Canadians with autism are being put into place as the result of the tireless advocating by parents and autism professionals who recognise the desperate need in this Country.

I did attend your parent forum in Langley last year. When I approached you at a separate event to enquire about a follow up meeting regarding what had been discussed at that forum you said to me "Why autism?" then told me you were very busy with the environment issues. That was devastating.

Mr Warawa, please refocus your efforts in this area to help ensure all children in Canada with autism and their families will be given the best chance possible. Hundreds of thousands of Canadians will thank you.

We need medicare for autism. Now.

Sincerely,

Dione Costanzo
Mom to a young son with autism

[Kelly Moonie]

I wrote a message to my current MP, Mark Warawa, Conservative Party asking him what he was going to do about the current issue/problem with Autism funding. This was his response.

Thank you for taking the time to write asking for additional funding to support families with an autistic child. Let me assure you that through the many meetings and visits I have had with parents and their children, I understand the challenges of parents who face autism on a daily basis.

I was asked by Langley parents to advocate in Ottawa for the federal government to share in the cost of a university chair to be established in British Columbia. That commitment was announced in October 2007 with the $1 million grant from the federal government matching the province of BC towards a National Chair at Simon Fraser University. I have rallied for autism in Ottawa, spoken to my colleagues and supported the creation of the National Autism Strategy passed in the House of Commons in 2006. In April 2007, I co-hosted a meeting with Langley parents and caregivers along with MLA Mary Polak to discuss the roles each government takes with regard to health issues such as autism.

While the responsibility of treatment funding remains with the provinces, the Conservative Government is spending millions every year in research into autism. We are also providing help for families through the tax system, providing information about best practices, and building awareness about autism. Through the efforts of CIHR’s Institute of Neurosciences, Mental Health and Addiction, which supports autism-related research, we are providing substantial support to find better treatments, and ultimately cures, for autism. While providing services for Canadians with autism is a provincial and territorial responsibility, we will continue to find ways to support parents and children.

Since taking office in 2006, the Conservative Government has made several changes to help families of children with autism. Our 2006 Budget increased the maximum annual Child Disability Benefit and extended it, allowing more families to qualify, and in our 2007 Budget we invested $140 million over two years to establish a Registered Disability Savings Plan. Budget 2008 expanded the GST/HST exemption for basic health and education services to include training for individuals with autism or other disabilities. Through the Canadian Institutes of Health Research (CIHR) the federal government has spent or committed $3.1M in 2006-07 and $3.6M in 2007-08 alone into research on autism. On November 8-9, 2007, CIHR, in conjunction with Health Canada and the Public Health Agency of Canada (PHAC), hosted a national autism research symposium, convening researchers, service providers, family members, persons with autism, community organizations and government representatives, to share knowledge and to support dialogue on future research priorities.

This year (2007/08), Health Canada is providing $50K to the Offord Centre for Child Studies to enhance their Canadian Autism Intervention Network Web site (which specializes in making research results more widely available). In spring 2008, PHAC undertook a web-based public consultation with over 1,500 parents and concerned groups to find out how to better provide information to the autism community. A dedicated autism page has been created on the Health Canada Web site, with information and links for parents. In May 2008, CIHR became a member of the Pan American Autism Research and Services Training Initiative. This will help to develop research expertise in the area of public health and screening for early diagnosis of autism, and enhanced service delivery across the Americas by providing training to professional service providers.

I hope the above assures you of this government’s ongoing commitment to helping families facing the challenges of this condition.

Mark Warawa, M.P.
Langley

[Andrew Kavchak]

Hi Folks,

For those of you who watched the political parties leaders' debates this past week (as part of this federal election campaign), there were some quite interesting moments. One in particular caught my attention.

On the healthcare issue, in the French debates, Mr. Dion pointed out that a recent Editorial in the Canadian Medical Association Journal (CMAJ) was critical of the Harper government health policies. Mr. Harper replied by suggesting that the authors of the editorial did not represent the CMA and that they were just a bunch of Liberals.

Well, the editorial in question is published at page 739 of the CMAJ edition of October 7, 2008, volume 179(8). It was also published at http://www.cmaj.ca on September 16, 2008. The Editorial is titled "Listeriosis is the least of it" and it has seven names of authors underneath it, with plenty of capital letters after their names, including the "Editor-in-Chief".

In a nutshell, the Editorial points out that in August Canada experienced the worst epidemic of Listeriosis in the world with over 16 deaths at the time of writing. What went wrong? As with the Walkerton water impurities and the SARS epidemic, there were "systemic failures across multiple levels". The ultimate cause: risky government decisions.

Last November the Canadian government (that's Harper, right?) instituted a "strategic review" of the Canadian Food Inspection Agency (CFIA). Among the outcomes was the transfer of inspection duties for ready-to-eat meats from the government inspectors to the meat industry. Cabinet approved it. In practice, inpectors subsequently rarely entered meat plants to test for bacteria, which was left mostly to the companies.

Canada's government also left national standards for Listeria lower than in many other countries. The U.S. government (that's Bush, right?) apparently does not tolerate any listeria at all. Confronted with this reality, Canada's government did not raise the standards (by lowering the tolerated amount of up to 100 Listeria bacteria per gram of ready-to-eat foods), but instead lobbied to have America's standards lowered!!!

"Government policy errors helped bring about this epidemic." Yet, the government has taken no remedial steps beyond issuing a food recall. Instead, officials prase the success of our infectious disease surveillance system – as if 16 deaths were cause to celebrate.

"The listeriosis epidemic is a timely reminder that the Harper government has reversed much of the progress that previous governments made on governing for public health. After the 2003 SARS epidemic, the government created the Public Health Agency of Canada with a Minister at the Cabinet table. But in 2006 Harper eliminated the PHAC Minister and the PHAC seat at the Cabinet table.

"His government also left the chief medical officer of health within the ranks of the civil service, working under the minister of health. In so doing,it left our country without a national independent voice to speak out on public health issues, including providing visible leadership during this crisis."

"And listeriosis may be the least of it." The Editorial goes on to address the question of inspection at animal feed mills, avian influenza preparedness, mad cow disease,…and the fact that tens of thousands could die in an influenca pandemic. "Listeriosis pales in comparison. Overall, it would seem that, as a country, Canada is far less prepared now for epidemics than in the past."

Oh sure, Harper called for an "independent investigation" the day before calling the election. If you want to know the set-up that was and what wrong with the "deeply disappointing" structure of the investigation, just read the Editorial. Not one investigor at arm's legnth from the govenrment has been or will be chosen. No powers to subpoena witnesses or documents, etc. Don't expect anything from this investigation which the Editorial claims "will be inferior to every epidemic inquiry in recent Canadian history" (e.g. tainted blood scandal, Walkerton, SARS). The Editorial concludes by indicating that the authors are "very troubled" and call on politicians to "explain their positions".

After reading such an editorial one can come to the conclusion that some politicians really don't care much about public health issues. And others are simply dangerous. Really dangerous.

[Andrew Kavchak]

Hi Folks,

I was just scanning the news at noon today, in this final week of the election campaign, and noticed a newsflash: the Conservatives, that's right, Stephen Harper, Tony Clement, etc., have just announced $10 million for a National Strategy on Pulmonary Diseases.

Isn't that interesting…when it comes to autism, despite years of requests, there is no "national strategy". Apparently the matter is entirely provincial, according to Mike Lake and Co. But for some many other diseases the feds see fit to deal with the health issues with a corresponding "national strategy". Just two questions…are the provinces not already dealing with pulmonary diseases (or do they discriminate against that too)? And what did the Pulmonary Diseases Association do to get the attention it received? I've never even heard of the Pulmonary Diseases Association or Society or whatever. Hmmm….

[Diane T]

Our neighbours to the south have new legislation which will require insurance companies to provide equal coverage for mental and physical illnesses.

See http://www.nytimes.com/2008/10/06/washington/06mental.html

BAILOUT PROVIDES MORE MENTAL HEALTH COVERAGE

By ROBERT PEAR
Published: October 5, 2008

WASHINGTON — More than one-third of all Americans will soon receive better insurance coverage for mental health treatments because of a new law that, for the first time, requires equal coverage of mental and physical illnesses.

Representative Patrick J. Kennedy speaking at a rally in March on Capitol Hill. Mr. Kennedy and Representative Jim Ramstad, third from left, led the fight in the House for mental health parity.

The requirement, included in the economic bailout bill that President Bush signed on Friday, is the result of 12 years of passionate advocacy by friends and relatives of people with mental illness and addiction disorders. They described the new law as a milestone in the quest for civil rights, an effort to end insurance discrimination and to reduce the stigma of mental illness.

Most employers and group health plans provide less coverage for mental health care than for the treatment of physical conditions like cancer, heart disease or broken bones. They will need to adjust their benefits to comply with the new law, which requires equivalence, or parity, in the coverage.

For decades, insurers have set higher co-payments and deductibles and stricter limits on treatment for addiction and mental illnesses.

By wiping away such restrictions, doctors said, the new law will make it easier for people to obtain treatment for a wide range of conditions, including depression, autism, schizophrenia, eating disorders and alcohol and drug abuse.

Frank B. McArdle, a health policy expert at Hewitt Associates, a benefits consulting firm, said the law would force sweeping changes in the workplace.

“A large majority of health plans currently have limits on hospital inpatient days and outpatient visits for mental health treatments, but not for other treatments,” Mr. McArdle said. “They will have to change their plan design.”

Federal officials said the law would improve coverage for 113 million people, including 82 million in employer-sponsored plans that are not subject to state regulation. The effective date, for most health plans, will be Jan. 1, 2010.

The Congressional Budget Office estimates that the new requirement will increase premiums by an average of about two-tenths of 1 percent. Businesses with 50 or fewer employees are exempt.

The goal of mental health parity once seemed politically unrealistic but gained widespread support for several reasons:

Researchers have found biological causes and effective treatments for numerous mental illnesses.

A number of companies now specialize in managing mental health benefits, making the costs to insurers and employers more affordable. The law allows these companies to continue managing benefits.

Employers have found that productivity tends to increase after workers are treated for mental illnesses and drug or alcohol dependence. Such treatments can reduce the number of lost work days.

The stigma of mental illness may have faded as people see members of the armed forces returning from Iraq and Afghanistan with serious mental problems.

Parity has proved workable when tried at the state level and in the health insurance program for federal employees, including members of Congress.

Dr. Steven E. Hyman, a former director of the National Institute of Mental Health, said it was impossible to justify insurance discrimination when an overwhelming body of scientific evidence showed that “mental illnesses represent real diseases of the brain.”

“Genetic mutations and unlucky combinations of normal genes contribute to the risk of autism and schizophrenia,” Dr. Hyman said. “There is also strong evidence that people with schizophrenia have thinning of the gray matter in parts of the brain that permit us to control our thoughts and behavior.”

The drive for mental health parity was led by Senator Pete V. Domenici, Republican of New Mexico, who has a daughter with schizophrenia, and Senator Paul Wellstone, the Minnesota Democrat who was killed in a plane crash in 2002. Mr. Wellstone had a brother with severe mental illness.

Prominent members of both parties, including Betty Ford, Rosalynn Carter and Tipper Gore, pleaded with Congress to pass the legislation.

Representatives Patrick J. Kennedy, Democrat of Rhode Island, and Jim Ramstad, Republican of Minnesota, led the fight in the House. Mr. Kennedy has been treated for depression and, by his own account, became “the public face of alcoholism and addiction” after a car crash on Capitol Hill in 2006. Mr. Ramstad traces his zeal to the day in 1981 when he woke up in a jail cell in South Dakota after an alcoholic blackout.

The Senate passed a mental health parity bill in September 2007. The House passed a different version in March of this year.

A breakthrough occurred when sponsors of the House bill agreed to drop a provision that required insurers to cover treatment for any condition listed in the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association.

Employers objected to such a requirement, saying it would have severely limited their discretion over what benefits to provide. Among the conditions in the manual, critics noted, are caffeine intoxication and sleep disorders resulting from jet lag.

Doctors often complain that insurers, especially managed care companies, interfere in their treatment decisions. But doctors and mental health advocates cited the work of such companies in arguing that mental health parity would be affordable, because the benefits could be managed.

Pamela B. Greenberg, president of the Association for Behavioral Health and Wellness, a trade group, said providers of mental health care typically drafted a treatment plan for each person. In complex cases, she said, a case manager or care coordinator monitors the patient’s progress.

A managed care company can refuse to pay for care, on the grounds that it is not medically necessary or “clinically appropriate.” But under the new law, insurers must disclose their criteria for determining medical necessity, as well as the reason for denying any particular claim for mental health services.

Andrew Sperling, a lobbyist at the National Alliance on Mental Illness, an advocacy group, said, “Under the new law, we will probably see more aggressive management of mental health benefits because insurers can no longer impose arbitrary limits.”

The law will also encourage insurers to integrate coverage for mental health care with medical and surgical benefits. Under the law, insurers cannot have separate cost-sharing requirements or treatment limits that apply only to mental illness and addiction disorders.

The law comes just three months after Congress eliminated discriminatory co-payments in Medicare, the program for people who are 65 and older or disabled.

Medicare beneficiaries pay 20 percent of the government-approved amount for most doctors’ services but 50 percent for outpatient mental health services. The co-payment for mental health care will be gradually reduced to 20 percent over six years.

The mental health parity law was forged in a highly unusual consensus-building process. For years, mental health advocates had been lobbying on the issue.

Insurers and employers, which had resisted earlier versions of the legislation, came to the table in 2004 at the request of Mr. Domenici and Senators Edward M. Kennedy, Democrat of Massachusetts, and Michael B. Enzi, Republican of Wyoming.

Each side had, in effect, a veto over the language of any bill. Insurers and employers, seeing broad bipartisan support for the goal in both houses of Congress, decided to work with mental health advocates. Each side gained the other’s trust.

“It was an incredible process,” said E. Neil Trautwein, a vice president of the National Retail Federation, a trade group. “We built the bill piece by piece from the ground up. It’s a good harbinger for future efforts on health care reform.”

[Andrew Kavchak]

From: http://www.canada.com/surreynow/news/story.html?id=8f45d08d-d1ba-40e0-b9c0-012848401d38

Group demands funding for autism

By Amy Reid

Special to Surrey Now

Tuesday, October 07, 2008

"We want medicare for autism and we want it now!" he cried to the crowd, and was met with a standing ovation.

The speaker, Wesley Romey, a 13-year-old boy who was diagnosed with autism at age six, was speaking to a crowd of about 300 people Saturday. The rally at Eaglequest Golf Club was to urge residents to vote for candidates who will fight for medicare coverage for autism treatment.

Autism NOW, a national coalition group, has targeted 14 ridings across Canada, including Newton-North Delta and Fleetwood-Port Kells, using its "two per cent solution." The tactic focuses on constituencies where current MPs won by two per cent or less in the last election, with the hope of influencing enough votes to elect supportive candidates.

The organization contacted the candidates in those ridings and asked them whether they will publicly commit to supporting medicare for autism if elected. In the two Surrey ridings, only the Conservative candidates have yet to respond. All other candidates from major parties have said yes.

Beverley Sharpe, one of the speakers, experienced first-hand the pitfalls of costly therapies.

When her child was diagnosed with autism, her husband left the family. She pawned anything of value, worked overtime, and to this day sleeps on her living room floor so she can rent out rooms in her house – all to pay for treatment for her daughter.

Wesley, though, was the speaker who particularly touched the crowd. Wesley shared with the audience his success with Applied Behavioral Analysis (ABA) therapy. He urged listeners to demand the government fund autism treatment, because he is proof that it works.

"I want to say this to every Canadian out there. It's not fair that every child with autism doesn't get the same chance that I did. If you don't stand up for your children, who will?"

Louise Witt, the Surrey campaign co-ordinator, said politicians must feel their pain, and have the strength to get the job done.

"We need to vote for the politicians who have the integrity to represent their constituents to Ottawa, not bring Ottawa to the constituents."
Medicare for Autism NOW will hold its next rally on October 9 in Ontario.

[Author]

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