[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.

 

---

—-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

 

---

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

[Jaswant Singh]

This is a follow up to my posting from last week regarding Revenue Canada’s request for additional information on the medical expenses I claimed on my tax return. First of all, I’d like to thank everyone who were kind enough to take time out of their busy schedules to reply to my request for feedback. Thanks!

I contacted the Autism Fund Processing Unit from Ministry of Children and Family Development and told them of my dilemma. The supervisor there, very promptly and courteously explained that they had dealt with confirmation requests from Revenue Canada before. The Ministry provides families with a letter that typically satisfies Revenue Canada’s requirements. So I just sent off the Ministry’s confirmation letter to Revenue Canada and let’s see what happens. Hopefully, they will be satisfied.

[Nancy Walton]

Regarding Tax stuff,

I am certain I sent in one or two stubs from MCFD payments (and said the monthly payments are the same) and photocopies of receipts of payments from the therapists. There was no problem with this.

I am starting to change how I do my taxes. I claim everything, then take off autism funding and supported child care funding and net claim what is left. I claim it first as child care (since I work) and claim what is left as medical. By the way, make sure you use the word "tutor" not "therapist" when doing the medical part. Save you lots of stress with RC.

[Jaswant Singh]

Hello All,

I could sure use some help and guidance from other parents who may have gone through a similar experience with Revenue Canada that I am currently going through.

In a nutshell, Revenue Canada first asked me to provide proof of medical expenses that I claimed in my tax return last year. This I provided – no problem. Now they are asking that I provide confirmation from the BC Ministry of Children and Family Development that these medical expenses were not paid for by the Autism Funding Age 6 program – and to do so within 30 days.

I've got copies of my monthly Schedule B submissions which show that the medical expenses that I am claiming are above and beyond the funding provided but I suspect that Revenue Canada wants something in writing from the Ministry that states this explicitly.

Does anyone have any suggestions as to how I can procure the necessary "confirmation" from the Ministry? I've put in a call and left a message to the Autism Funds Processing Unit (1-877-777-3530) but is there someone else I should be speaking with? If anyone can help, I would sincerely appreciate it. Thanks.

My email address is: c d r a n u @ y a h o o .com

Sincerely,
Singh Family

[Andrew Kavchak]

This article appeared in the December 4, 2007, editions of the Ottawa Sun, Toronto Sun, Winnipeg Sun, Calgary Sun and Edmonton Sun newspapers.

Autism
Fighting for funding

SUSAN SHERRING

Sen. Jim Munson knows all too well about the feelings of alienation when your child doesn't fit the mold.

As the father of a boy born with Down syndrome, Munson says he understands the frustration felt by parents of children diagnosed with autism. Munson's son, Timothy, who died before reaching his first birthday almost 40 years ago, is part of the impetus for the former national television reporter, now senator, to push for the Senate Report on Autism.

Munson is tired of the turf wars over who is responsible for funding of treatment.

"As a nation, we have to take a look at all of this. We have an obligation as a society. For families with an autistic child, this is extremely expensive. You've got families breaking up, mortgaging their homes. I'm tired of the jurisdictional shell game," he said.

"The bottom line is we have to put it all on the table. If we don't, how are we ever going to have a national program? People are scrambling to get treatments for their sons and daughters."

It was one day on Parliament Hill back in Sept. 2004 when Munson first encountered Andrew Kavchak with a sandwich board around his neck.
Kavchak told him his story about his autistic child and his struggles for government-funded treatment

For Munson, it was a story that resonated.
"I cried with him. As a nation, we have to take a look at it, we have an obligation as a society. We have to do this for moral and financial reasons," Munson said, explaining how the concept of the senate inquiry, Pay Now or Pay Later, came about.

"I know what this is like, these kids will get institutionalized like the Down syndrome children of the '50s and '60s," Munson said.
Kavchak took to wearing his sandwich board after his son Steve was diagnosed at the age of two, but couldn't get treatment. He was told he was on a waiting list with the recommendation he seek private treatment.

"It was devastating for us," he said, adding they spent about $40,000 the first year alone.
"I remember very clearly one day I saw Sen. Munson walk by the Centennial Flame. He was very kind and I asked him to help. To my great satisfaction he listened.

"Sen. Munson has been our angel on the Hill," Kavchak said.

The report, released earlier this year, calls for a national autism strategy, dealing with a wide variety of issues — everything from the undue financial burden often placed on parents to treatment and research.

"No matter how a National Autism Strategy is structured, witnesses were clear that individuals with ASD must be included in the consultation and play a role within the strategy itself, that it receive adequate ongoing funding, that it span the lifetime of affected individuals and that it strive to achieve consistency across the country in terms of information dissemination, assessment, treatments and supports," the report reads.

As the title of the report suggests — Pay Now or Pay Later: Autism Families in Crisis — there is a high price to pay if the needs of autistic children are ignored.

"The committee fully supports the view expressed by families with autistic children and autistic individuals themselves that governments must pay now; otherwise, they will pay later. We believe that the latter is simply not an option."

Recently, the Conservative government responded to the report, but the response is not nearly good enough for either Kavchak or Munson.

The response is more a regurgitation of what the federal government now does than a sign it's willing to adopt the recommendations of the Senate report. And the government doesn't suggest it will lead the way in forming a national strategy.

While it promises more research, it falls short of what was hoped for. One example: "As identified by the Senate Committee, there is a lack of consensus and evidence on ASD issues. Accordingly, governments do not yet know enough about ASD and its treatments to implement effective and well-informed strategies that would lead to meaningful outcomes," the response, released last month, reads.

But Munson said he won't stop pushing for what he believes in.

"We have to get together in one room- — families, scientists, researchers, politicians, and close the door. Right now, we've got our heads stuck in the sand. This is too important, it's a crisis.

"We owe it to these people … I have found a place and I use the motivation of our son to fight for families who have children with autism."
—
HIGHLIGHTS

Recommendations from the Standing Senate Committee report entitled: Pay Now or Pay Later — Autism Families in Crisis
– The federal government establish a comprehensive National Autism Spectrum Disorder (ASD) Strategy.
– The federal government convene a federal/provincial/territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy.
– The conference identify measures of accountability in the use of federal funds for autism treatment.
– The conference also define the feasibility of introducing measures such as supports for caregivers, including respite, family training and assistance, assisted living support as well as career and vocational training.
– Health Canada, in consultation with autistic individuals and other stakeholders, implement a national public awareness campaign.
– The federal government create an Autism Research Network — and provides substantial new funding for this — to work collaboratively with all stakeholders to develop an agenda.
– The federal government work collaboratively with the provinces and territories to address the human resource issues including training standards and inter-provincial mobility in the field of ASD.
– The federal government, in implementing the recommendations of the Minister of Finances Expert Panel on Financial Security for Children with Severe Disabilities, ensure that autism qualifies as an eligible disability.
– The Department of Finance and the Revenue Canada Agency study the implications of income splitting for ASD families and issue a report to the Minister of Finance by June 2008.
ILLUS: file photo by Tom Hanson Jim Munson is pushing for the Senate Report on Autism.

[Andrew Kavchak]

House of Commons
Hansard
Friday, November 30, 2007

STATEMENTS BY MEMBERS

Autism

Mr. Peter Stoffer (Sackville—Eastern Shore, NDP):

Mr. Speaker, we know the government has a habit of ignoring motions passed by the House by the opposition, but it is really incredible when it ignores a motion that it supported.

Earlier this year, the House unanimously passed a motion to deal with the situation of autism in our country. The government sits on billions and billions of dollars of surplus, yet not one additional penny is available to coordinate with the provinces and territories assistance for children with autism and their families.

What is the government waiting for? The governments of Europe and of the United States are moving very quickly with a huge investment to assist these children with autism and their families, yet the Conservative government ignores a motion by the House to have a meeting with the provinces and territories to deal with a national plan and with this crisis.

Given the right opportunity and the right investment, these children could have an opportunity that all children in the country have. Autistic children are living in the most beautiful country in the world. It is time the government stood up and honoured that commitment.

____________

[Andrew Kavchak]

What would it take to get some similar action north of the 49th?
__________________________

HHS Secretary Leavitt Announces Members of the New Interagency Autism Coordinating Committee

WASHINGTON, Nov. 27 /PRNewswire-USNewswire/ — HHS Secretary Mike
Leavitt announced today the members appointed to the Department of Health
and Human Services' new Interagency Autism Coordinating Committee. This
committee coordinates efforts within the department to combat autism
spectrum disorder through research, screening, intervention, and education.
The committee will facilitate the efficient and effective exchange of
information on autism activities among member agencies, and coordinate
autism-related programs and initiatives.

"This important committee will play a key role in coordinating autism
research, services, and education related to autism spectrum disorder,"
Secretary Leavitt said. "I'm pleased that its members bring to the
committee a wide range and great depth of expertise, including research and
program administration, advocacy and personal experience with the
condition."

Authorized under the Combating Autism Act of 2006, the Interagency
Autism Coordinating Committee advises the HHS Secretary and the Director of
the National Institutes of Health (NIH). Secretary Leavitt delegated the
authority to establish the committee to the NIH, which designated its
National Institute of Mental Health (NIMH) to lead this activity.

The committee chair is Thomas R. Insel, M.D., director of NIMH.

"The committee's first priority will be to develop a strategic plan for
autism research that can guide public and private investments to make the
greatest difference for families struggling with autism," Dr. Insel said.

HHS is active in fostering research and making the results available to
aid people with autism.

Among the activities:

NIH funding and expertise support the Autism Centers of Excellence
program, which the agency launched after the Combating Autism Act was
passed, to seek the causes of autism and new treatments for the disorder.

The Centers for Disease Control and Prevention (CDC) supports a
multi-state collaborative study to help identify factors that put children
at risk for autism spectrum disorders (ASDs) and other developmental
disabilities. The five-year study, called SEED (Study to Explore Early
Development), is currently enrolling participants.

CDC has reported findings from the first and largest summary of autism
prevalence data from multiple U.S. communities. These findings, which found
autism spectrum disorders in approximately one in 150 children in these
communities, was reported by the Autism and Development Disabilities
Monitoring Network, which was designed to provide more consistent and
reliable estimates.

Federal members of the new panel:

Duane Alexander, M.D., is director of the National Institute of Child
Health and Human Development at NIH. The Institute supports research on all
stages of human development, from preconception to adulthood, to better
understand the health of children, adults, families, and communities.

James Battey, M.D., Ph.D., is director of the National Institute on
Deafness and Other Communications Disorders at NIH. The Institute supports
biomedical and behavioral research and research training in the normal and
disordered processes of hearing, balance, smell, taste, voice, speech, and
language.

Ellen Blackwell, M.S.W., is a health insurance specialist of the
Division of Community and Institutional Services, Disabled and Elderly
Health Programs Group, Center for Medicaid and State Operations, Centers
for Medicare and Medicaid Services where she serves as an expert on
policies that affect individuals with autism spectrum disorders.

Margaret Giannini, M.D., F.A.A.P., is director of the HHS Office on
Disability. Dr. Giannini serves as advisor to the Secretary on HHS
activities relating to disabilities. She is also a member of the Institute
of Medicine of the National Academy of Sciences and fellow of the American
Academy of Pediatrics.

Gail Houle, Ph.D., is associate division director of the
Research-to-Practice Division, Early Childhood Programs, Office of Special
Education Programs, Department of Education where she oversees programs for
children with disabilities and their families funded through the Individual
with Disabilities Education Act. Her expertise focuses on services for
children with autism spectrum disorders.

Larke Huang, Ph.D., is senior advisor on children and a licensed
clinical-community psychologist who provides leadership on federal national
policy pertaining to mental health and substance use issues for children,
adolescents and families for the Substance Abuse and Mental Health Services
Administration.

Thomas Insel, M.D., is director of the National Institute of Mental
Health at NIH. The Institute's mission is to reduce the burden of mental
illness and behavioral disorders through research on mind, brain, and
behavior.

Story Landis, Ph.D., is director of the National Institute of
Neurological Disorders and Stroke at NIH. The Institute's focus is directed
toward reducing the burden of neurological disease through research on the
normal and diseased nervous system.

Cindy Lawler, Ph.D., is scientific program director of the Cellular,
Organs, and Systems Pathobiology Branch, Division of Extramural Research
and Training, National Institute of Environmental Health Sciences at NIH.
The Branch plans, directs, and evaluates the Institute's grant program that
supports research and research training in environmental health.

Patricia Morrissey, Ph.D., is commissioner of the Administration on
Developmental Disabilities at the Administration for Children and Families,
which seeks to improve services to and assure that individuals with
developmental disabilities have opportunities to make their own choices,
contribute to society, have supports to live independently, and are free of
abuse, neglect, financial and sexual exploitation, and violations of their
legal and human rights.

Edwin Trevathan, M.D., M.P.H., is director of the National Center on
Birth Defects and Developmental Disabilities (NCBDDD) at CDC. NCBDDD is
focused on identifying the causes of and preventing birth defects and
developmental disabilities, helping children to develop and reach their
full potential, and promoting health and well-being among people of all
ages with disabilities. Dr. Trevathan is representing Julie Gerberding,
M.D., M.P.H., director of the CDC, on the committee.

Peter van Dyck, M.D., M.P.H., is associate administrator of Maternal
and Child Health at the Health Resources and Services Administration
(HRSA). Dr. van Dyck oversees HRSA's Maternal and Child Health Bureau,
which seeks to improve the health of mothers, children, and families,
particularly those who are poor or lack access to care.

Elias Zerhouni, M.D., is director of the National Institutes of Health.
A world renowned leader in the field of radiology and medicine, Dr.
Zerhouni has spent his career providing clinical, scientific, and
administrative leadership. He leads the nation's medical research agency
and oversees the NIH's 27 Institutes and Centers with more than 18,000
employees.

Non-federal members:

Lee Grossman is president and CEO of Autism Society of America (ASA)
and the parent of a young adult son with autism. Mr. Grossman is also the
chair of the ASA Foundation and a member of the ASA Environmental Health
Advisory Board.

Yvette Janvier, M.D., is the medical director for Children's
Specialized Hospital in New Jersey. Dr. Janvier is also a clinical
assistant professor in the Department of Pediatrics, Robert Wood Johnson
Medical School. Her specialties are autism and developmental and behavioral
pediatrics. Dr. Janvier is a fellow of the American Academy of Pediatrics.

Christine McKee, J.D., has developed and manages an in-home therapy for
her autistic child, creating and/or assembling all of the therapy related
materials. Ms. McKee participates in monthly consultations with a Board
Certified Behavior Analyst/Speech Pathologist. She applies the therapeutic
measures in her daily parenting and childcare routines.

Lyn Redwood, RN, MSN, is co-founder and president of the Coalition for
Safe Minds. Ms. Redwood is also on the board of the National Autism
Association. She became involved in autism research when her son was
diagnosed with pervasive development disorder in 1999. She is a nurse
practitioner with 25 years of experience.

Stephen Shore, Ed.D., is executive director of Autism Spectrum Disorder
Consulting. Drawing on his experiences as an individual with an autism
spectrum disorders diagnosis, Dr. Shore presents and consults
internationally on adult issues pertinent to education, relationships,
employment, advocacy, and disclosure. He also serves on the board of the
Autism Society of America, as board president of the Asperger's Association
of New England, and is on the board of directors for Unlocking Autism, the
Autism Services Association of Massachusetts, MAAP Services, The College
Internship Program, and the KEEN Foundation.

Alison Tepper Singer, MBA, is executive vice president of Autism Speaks
and is a member of the board of directors. Prior to joining Autism Speaks,
Ms. Singer spent 14 years at CNBC and NBC where she served in several
positions. She has both a daughter and an older brother with autism, giving
her long-term, personal experience with the disorder.

The following Web page provides links to additional information on the
Interagency Autism Coordinating Committee, including information about
upcoming meetings and highlights from meetings of the prior committee:
http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meet
ings/iacc/index.shtml

NIMH's mission is to reduce the burden of mental and behavioral
disorders through research on mind, brain, and behavior. More information
is available at the NIMH Web site, http://www.nimh.nih.gov.

NIH — The Nation's Medical Research Agency — includes 27 Institutes
and Centers and is a component of the U.S. Department of Health and Human
Services. It is the primary federal agency for conducting and supporting
basic, clinical and translational medical research, and it investigates the
causes, treatments, and cures for both common and rare diseases. For more
information about NIH and its programs, visit http://www.nih.gov.

Note: All HHS press releases, fact sheets and other press materials are
available at http://www.hhs.gov/news.

SOURCE U.S. Department of Health and Human Services

[Debra Antifaev]

Thanks for writing, Pam. I think that most of us do forget those amazing shoulders we have stood on.
I actually heard a woman (who has been receiving the 1667.oo per month since her child was diagnosed)saying that she was "sick of feeling like she should say "thank you" all the time". Huh?
You will have to excuse me, as this is just my humble opinion, but I believe we should NEVER forget where this Province has come from. Just as we remember the veterans every year with the saying…"lest we forget" we should always be grateful to those who gave freely of their time and energy for the good of us all.
There was a time when institutions were the only option. How incredibly sad.
Gratitude is the LEAST I can offer.
I am so grateful to each and every member of Auton.

[Pam Browne]

Hi everyone,
This weekend a fellow FEAT member and myself were choosen to attend a BCACL event. The event was to speak about advocacy. There was one part of the weekend that spoke strongly to both of us and I just thought I would share it with you.

We had a parent panel and there was the well dressed stunning little old lady that entered the room. As it turns out she is the person they refer to as the Grandmother of Community Living. In our not too distant past there was an institution called Woodlands, we saw a video of this place that would have housed, among other children and adults, children with autism. These children slept 17 to a room with no privacy at all. They were tied to their beds at night and for most of them feed in their beds in the morning. Some wore helmets and sat in the corner and banged their heads against the wall and others sat tied to chairs or rails for the day. The lucky ones got some speach and OT therapy, but these were few. Woodlands housed over 1000 people.

This little old lady, named Jo Dicky, had a child that was in Woodlands and it was her and few other parent that were instrumental in closing down Woodlands and taking children with disabilities back into the community.

I started to think about where my son would be without advocates like Mrs. Dickey. And where would my child be without ABA and funding? Without the money and the medically necissary ABA treatment would my son, who is in grade 2 at his local school, be a candidate for Woodlands?

It is soo important to learn about the past for our children with autism and to not forget. Families and people who have fought for our childrens rights such as the Auton and Hewko families and financial contributors to the court cases, Sabrina Freeman and Jean Lewis and all the others who have stood up to make a difference.

We must all band together to support FEAT in the movement forward. If you don't have the time to support then a donation to FEAT would be great. If you don't have the money then offer your time. There is something that all of us can do to help.

Finally, we must all be aware that unless we continue things could change for the worse. There are still institutions in Canada. There are only two Provinces in our country that DO NOT have institutions. If the funding was pulled where would you be? Please support FEAT in fighting for your childs rights to medically necissary autism treatment.

Thanks

[Andrew Kavchak]

Ohio Lawmakers Push Autism Coverage Bill

COLUMBUS, Ohio (AP) — Fully insured health plans would be required to cover diagnosis as well as treatment for autism under an Ohio House bill advocates say would expose autistic children to early treatment that will benefit them the rest of their lives.

The proposal, which has bipartisan sponsors, is modeled after the two-month-old mental health parity law that requires health insurance providers to cover certain psychological conditions. Currently, many health plans cover the diagnosis of autism but not treatment.

"I just feel like taxpayers shouldn't have to pick up the tab," said Tamara Heydt, a mother of two autistic children, 9-year-old Gavin and 11-year-old Garrett. "My insurance should have to pay for it. Insurance companies pay for other neurological disorders. I feel like it's discrimination."

The family spent $60,000 on treatment in one 18-month period.

The Heydts were able to stave off bankruptcy because her children qualified for Medicaid waivers after their diagnosis. The family is insured through Medical Mutual of Ohio.

Joseph Gibbons, director of government relations for Medical Mutual, said his company doesn't cover autism treatment and doesn't believe any employer who buys insurance has ever asked for the coverage.

Insurance industry officials want more details about the House bill, which is being sponsored by Republican Rep. Jon M. Peterson and democratic Rep. Ted Celeste, both of suburban Columbus. Insurance officials are concerned the bill would lead to more mandates based on a disease or health condition.

"Each individual has the belief that their cause is the one that the government needs to find the solution to," said Kelly McGivern, president of the Ohio Association of Health Plans. "We believe employers who buy policies should make the decision."

Continuing treatments, involving such things as speech therapy, a psychologist working on socialization skills and home health aides, aren't covered, said Jacquie Wynn, director of the Center for Autism Spectrum Disorders at Nationwide Children's Hospital. Autistic children, she said, need 30 hours to 40 hours of intervention a week.

Wynn said 30 percent of families who come to the center for treatment leave because they can't afford it.

"There's a cost savings in the reduction of aggressive behavior or the self-care skills they learn," she said. "With short-term, early intervention in their early years, you see the payoff in their lifetime."

Information from: The Columbus Dispatch, http://www.dispatch.com

[Andrew Kavchak]

Hi Folks,

As many of you know, the autism community is not a particularly cohesive group with lots of different beliefs, opinions, and ideas, etc. While this diversity is a great thing at an art show, etc. the fact is that it is used by politicians and bureaucrats to do nothing, or little, when it comes to policies and programs.

When the Standing Senate Committee on Social Affairs inquired into the funding for the treatment of autism, they heard from 50 witnesses and received many briefs. Many people such as Dr. Laredo, Dr. Ofner, Jean Lewis (the FEAT BC rep), myself, etc. stressed that the medical/scientific literature reveals only one treatment, namely IBI/ABA, is effective. For over 20 years this treatment has been the gold standard of autism treatment and that no other treatment had the kind of scientific studies and evidence to back it up. However, the committee also heard from the "we have lots of stories to tell – no studies, just anecdotes" and the "autistics don't want to be cured" crowd….even one guy who was convinced that autism was caused by MSG in the diet and that the removal of MSG from all foods (they have that in a lot of Chinese food, don't they?) would solve the problem.

Notwithstanding the fact that the committee had several doctors among its members, including a world famous heart surgeon who repeatedly talks about the importance of research (presummably using the "scientific method"), the Senate report was a disappointment in this area as they did not state clearly what is the state of scientific research in the area but merely summarized what people "argued" and what they "favoured" and "felt". This is rather amazing because Health Canada actually has staff to evaluate the studies of pharmaceuticals who wish to peddle new drugs on the market. No one can get a licence to sell new drugs without emerging from a vigorous approval process that is based on studies and the scientific method. Some of those scientists even complained publicly several years ago when their budgets were cut back and they were forced to rush some studies and cut dangerous corners, etc.

However, when it comes to autism treatment, suddenly the scientific method does not matter and what people, all people, "argue", "favour" and "feel" is suddenly the criteria of choice for politicians and decision-makers when it comes to autism treatment policies and programs. Recently the Minister of Health posted a message on his department website that the cause and cure of autism are not known, and neither is the most effective treatment. A colleague of mine recently wrote to the Minister and told him that his statement was false. My colleague recently got a letter back from the Minister's "Chief of Staff" which actually quoted the Senate report's paragraph about treatment alternatives and what people "argued", "favoured" and "felt" as the basis for Mr. Clement's statement and to justify holding the symposium to address the knowledge gaps instead of actually doing something now with respect to the development of a National Autism Strategy that would help those who need the treatment get access to it.

This is amazing stuff that leaves one shaking one's head in disbelief. In the history and evolution of humankind I thought that people like Copernicus, Galileo, Newton, etc. ushered in a new era known as "the scientific revolution" where the laws of nature would be discovered using the scientific method and that pagan beliefs would be relegated to those practicing "voodoo" in the third world. After all these centuries we have managed to develop so much through science and technology. I remember when I was a child that we actually got three guys to the moon and back, alive! But in 2007, what counts in the evaluation of treatments is what people, all people, including those who have no idea what the scientific method consists of, "argue", "favour" and "feel" with no reference to a single study that meets the criteria of scientific analysis. I had no idea that such medieval thinking and paradigms still survived among the political elite in Canada, and that they could so successfully used to persuade the masses of the necessity of preserving the status quo.

In the near future we should see the publication of a new book by Dr. Sabrina Freeman about the importance of science in evaluating autism treatments. It will be an eye opener for those living in the middle ages.

Cheers!
Andrew Kavchak
Ottawa

[Author]

Replies