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Andrew Kavchak
ParticipantNational Post
Monday, Feb 11, 2008.Ontario court to rule if autism suit can proceed
Treatment FundingShannon Kari, National Post
The Ontario Court of Appeal is being asked to decide if a class-action lawsuit can go ahead on behalf of autistic children seeking treatment within the public school system in the province.
A three-judge panel will hear an appeal today of a Superior Court decision in March, 2007, that allowed part of the lawsuit to continue, based on allegations that the policy violates the equality provisions of the Charter of Rights.
The provincial government will be seeking to dismiss the legal action entirely, arguing that the issue has already been decided by a Court of Appeal ruling in 2006 involving age cutoffs for publicly funded autism treatment.
The Ontario government eliminated the age restriction for intensive behavioural intervention (IBI) treatment for autistic children, although the programs are outside of the school setting.
The parents represented in the class action lawsuit say they are asking for the same treatment for their children as for students with other disabilities.
"We feel our children are entitled to an education, the same as every other child," said Lynn Shane, whose son is autistic.
She said the province is funding more than 20 hours of IBI treatment weekly for her son. But it is not within a school and as a result, she drives her son from Mississauga to Burlington four times a week for treatment and also provides him with home schooling.
Other parents have placed their children in private education programs, at their own expense.
"We want the province to allow children with autism to access education and therapy," Ms. Shane said.
David Baker, a lawyer representing the parents, said they are put in a difficult spot.
"Parents have to choose, whether to receive the therapy, or education," for their children, Mr. Baker said.
"They are entitled to both," he stated.
Ontario is the only jurisdiction in North America that does not deliver IBI treatment through the education system, Mr. Baker said.
skari@nationalpost.com LEARNING DISABILITIES; MENTALLY DISABLED; THERAPY; EMOTIONALLY DISABLED; CHILDREN; DISABLED
ILLUS: Black & White Photo: Kerry's Place Autism Services / Stefan Marinoiu, father of a 15-year-old autistic son, pauses near Kingston, Ont., last week on his way to Ottawa. Marinoiu left Toronto on Jan. 31 on a 450-kilometre walk to plead for a national autism strategy. ;
ParticipantOttawa Citizen
Mon, Feb 11, 2008, Page A5.
(Similar article also in Montreal Gazette. Note: there may be a press conference today as well.)Snow no match for man on 450-kilometre autism walk
Jordana Huber, With Files From Jessey Bird
The metal plate in his left foot is bothering him, and the blizzards Stefan Marinoiu has walked through have left him with frozen fingertips. But after an 11-day trek to Ottawa to raise awareness about autism, the 49-year-old said the only thing on his mind is his 15-year-old son.
Unplanned, and out of exasperation, Mr. Marinoiu left his Toronto home Jan. 31 to embark on a 450-kilometre walk to "plead with the politicians" that it is time for a national autism strategy.
"Having an autistic child is like having a present and not being able to unwrap it," Mr. Marinoiu said. "I have been silent for 15 years. All the stress, all the pain, no resources, I said I gotta do something and I just walked out the door."
His pace has slowed since he left without telling his wife where he was going, and at times, he said blinding snow has left him unable to see the road.
The Ontario Provincial Police, who stopped him the first night for walking illegally on the highway, kept an eye out for him, picking him up several times and driving him into the nearest community.
"They told me I was gonna freeze to death," he said. "It has been so cold you feel like you are going to die the next second, but I take the next step. I am walking for all the tens of thousands who are like my son."
Though he can't point to one event that triggered his march, he said his son Simon's needs have grown increasingly difficult to meet. Simon waited on a list for applied behaviour analysis, an intensive treatment also known as intensive behavioural intervention for autistic children, but turned seven, the former cutoff age, before reaching the top of the list, Mr. Marinoiu said.
"My son, he can't speak, but I know he feels so much," Mr. Marinoiu said. " He needs help to be able to function and communicate. We have all the love to give him, but we need more resources."
Without money or a cellphone, the part-time delivery man has relied on benevolent strangers for help along his trek. One night, he slept in a homeless shelter, another in a church.
Area residents have anonymously paid for hotel rooms, while others have stopped along the highway to bring him food.
Last night, Kanata resident Lucie Filteau welcomed Mr. Marinoiu into her home.
Mrs. Filteau has two young sons with autism.
"He is at the end of his rope, desperately trying to get attention," she said. "He is acting out of his heart."
Mr. Marinoiu's 16-year-old daughter, Lia, created a Facebook group to share her father's cause. It now has more than 1,400 members.
"At first I thought he was crazy," said Lia, who took the train to meet her father in Ottawa last night. "But now I think it is really awesome what he has done and is still doing."
Mr. Marinoiu, his daughter and their supporters hope to arrive on Parliament Hill today between 11 a.m. and noon to rally for their cause. Mr. Marinoiu said Senator Jim Munson is expected to welcome him.
"I'm hoping for a national solution for this national problem," Mr. Marinoiu said.
ILLUS: Colour Photo: Courtesy of Kerry's Place Autism Services / Stefan Marinoiu, father of a 15-year-old autistic boy, pauses near Kingston last Thursday, on his way to Ottawa. Mr. Marinoiu left his Toronto home Jan. 31 on a 450-kilometre walk to plead for a national autism strategy.
ParticipantRelease
For Immediate Release
SENATOR JIM MUNSON SUPPORTS STEFAN MARINOIU IN HIS WALK FOR AUTISM
OTTAWA, February 7, 2008 The Honourable Jim Munson (Ottawa Rideau Canal) extends his support to Stefan Marinoiu who has embarked on a mission to walk from Toronto to Ottawa to increase awareness about autism and the need for increased funding for its treatment. Mr. Marinoiu is the father of a son with autism. The Senator has contacted Mr. Marinoius family and will continue to closely follow his progress.
On the morning of Thursday, January 31, 2008, Mr. Marinoiu left his Toronto home and started walking to Ottawa. His initiative was not carefully planned nor was it in any way publicized it even caught his wife and older daughter by surprise. Rather, it was the result of the accumulation of frustrations and the feeling of desperation shared by many parents of autistic children. It has now been a week since Mr. Marinoius departure and he has already arrived in Kingston.
Senator Munson wishes Mr. Marinoiu the best of luck with the rest of his journey and assures him that he will be there to welcome him upon his arrival in Ottawa.
Senator Munson launched the Senate Inquiry into the treatment of autism in Canada. This resulted in the publication of the report of the Senate Committee on Social Affairs, Science and Technology entitled Pay Now or Pay Later. Follow this link to view the report: http://www.parl.gc.ca/39/1/parlbus/commbus/senate/com-e/soci-e/rep-e/repfinmar07-e.htm
– 30 –
For more information, please contact:
The Honourable Jim Munson
Senator (Ottawa Rideau Canal)
Tel: (613) 947-2504
or
Lia Marinoiu (Daughter of Mr. Marinoiu)
Scarborough ON
(416)-412-7656
-————————————————
Communiqué
Pour publication immédiate
LE SÉNATEUR JIM MUNSON APPUI STEFAN MARINOIU QUI MARCHE POUR LAUTISME
OTTAWA, 7 février 2008 Lhonorable Jim Munson (Ottawa Canal Rideau) appui Stefan Marinoiu qui sest lancé le défi de marcher de Toronto à Ottawa afin dattirer lattention des Canadiens à lautisme et à la nécessité daugmenter le financement pour son traitement. Monsieur Marinoiu a un fils atteint par lautisme. Le Sénateur a contacté la famille de M. Marinoiu et il planifie suivre son progrès attentivement.
Le matin du jeudi, 31 janvier 2008, M. Marinoiu a quitté sa résidence à Toronto et a entamé sa marche vers Ottawa. Cette initiative ne fut ni planifiée, ni publicisée. Dailleurs, le départ soudain de M. Marinoiu fut une surprise pour sa famille. Sa décision fut pressée et le résultat dune accumulation de frustrations qui est partagée par plusieurs parents denfants atteints par lautisme. M. Marinoiu marche depuis déjà une semaine et sest rendu à Kingston aujourdhui.
Le Sénateur Munson souhaite bonne chance à M. Marinoiu et sera à Ottawa pour laccueillir lors de son arrivée.
Le Sénateur Munson a lancé une enquête dans le traitement de lautisme au Canada. Le résultat de cette enquête fut le rapport du comité permanent des affaires sociales, sciences et technologie intitulé Payer maintenant ou payer plus tard. Pour lire le rapport, veuillez suivre le lien suivant: http://www.parl.gc.ca/39/1/parlbus/commbus/senate/com-f/soci-f/rep-f/repfinmar07-f.htm
– 30 –
Pour de plus amples renseignements, veuillez contacter:
Lhonorable Jim Munson
Sénateur (Ottawa Canal Rideau)
Tél: (613) 947-2504
ou
Mlle. Lia Marinoiu (fille de Monsieur Marinoiu)
Scarborough ON
(416)-412-7656
ParticipantThere is an article and picture of Mr. Marianou at
http://www.napaneeguide.com/ArticleDisplay.aspx?e=892780Autism activist treks through Napanee
By Micah Luxen
With a bright pink sign for autism, one man, Stefan Marinoiu, walks alone down the highway, making his way from Toronto to Ottawa in the cold.
Hes already walked six days at three kilometres an hour with an injured foot, but Marinoiu is going all the way to Ottawa for his 15-year-old, who has autism. The determined father says autistic children need much more support from the government.
[The government] is telling me they have no resources for us but as autistic children get older, life gets more difficult, so we need more help, and Im going to the federal government to ask them for it, said Marinoiu, as he walked though Napanee on Wednesday afternoon.
He went on to say that the United States government offers families with autistic children substantial support, something he hopes the Canadian government will adopt.
Im trying to do something for all those children in Canada who have autism, because they deserve the same happiness as the other children, said Marinoiu of the illness that affects brain development in one in 1,000 children.
Its been a hard walk for Marinoiu whos kept on course, even during two blizzards.
The snowstorm was really bad, but I kept walking, with the exception of a 10 minute drive by the OPP who said, wow, youre going to freeze to death.
And Im very slow because I never did this before.
The OPP picked up the walker on the 401, where it is illegal to walk hes now using Highway 2.
Marinoiu hoped to reach Kingston by Wednesday nightfall.
Im not a protester–Im going to Ottawa in friendliness. I just want to find a solution for autism.
ParticipantIf this father makes it to Ottawa, please ask your MP to meet with him. I hope he has a press conference, rally, etc. to call on the feds to adopt and implement the recommendations of the Senate Committee and to turn the words of the National Autism Strategy motion that they supported in the House into action, etc.
__________________________________________
Father makes trek to shed light on autism
Bellevue Intelligencer
http://www.intelligencer.ca/ArticleDisplay.aspx?e=889682You can't really blame Stefan Marinoiu for wanting a shortcut to Ottawa, especially since he is walking there from Toronto.
When the Ontario Provincial Police picked him up near Oshawa he found out Highway 401 was the wrong choice.
"It's illegal to walk on the 401. I didn't know that," he said. "I thought it would be a better, straight, shorter way."
Marinoiu, 49, is making the 452-kilometre walk from Toronto to Ottawa to raise public awareness of autism.
His passion for autism is evident when he speaks and the sandwich board sign he wears which reads 'autism: time for a national solution' only reinforces that.
Marinoiu has a 15-year-old son who was diagnosed with autism when he was a child.
Marinoiu and his wife have struggled to provide proper support while their son's condition has deteriorated with age. He has now become aggressive, a common symptom in autistic children, and Marinoiu is afraid the Children's Aid Society may take him away, fearing he could hurt their younger six-year-old child.
"His autism has progressed to the point that communication is a struggle," Marinoiu said. "We just do not have the money to provide proper care for him."
Once in Ottawa, Marinoiu plans on going straight to Parliament Hill to speak with the federal government about increasing funding to support families like his who are dealing with autism. He also wants to urge the government to fund more research into autism.
"There are three types of governments: Governments that make things happen, governments that see things happen and the kind that asks what happened," he said. "We need to be the government that makes things happen."
Marinoiu, who has a plate in his left foot after breaking it two years ago, began his walk last Thursday morning from his home in Toronto. By Monday night he had walked the 171 kilometres to Trenton.
He said it has been frigid at times, especially through the blowing snow, freezing rain and high winds of Friday's snowstorm. But he just kept walking.
"I'm making something happen," he said. "If it takes me 10 days that's nothing compared to a life of despair."
He has had some help along the way. On Friday night, a Newtonville couple invited him into their home, made him coffee and a hot meal, washed his clothes and gave him a bed for the night.
At 3 a.m. Sunday Marinoiu found himself at the door of the Pentecostal Church in Cobourg. The church not only welcomed Marinoiu but gave him bedding and made him a part of their Sunday morning service.
Although he has accepted several small donations along the way from supporters, he insists he is not doing this for money.
He said he was given the "run around" after writing letters to the federal government and grew frustrated, so he decided this was the only way to promote awareness of autism.
People have referred to him as a protester, but Marinoiu does not see himself that way.
"I'm a friend. I'm not a revolutionist, I'm just a simple man trying to get a point across."
ParticipantAnd on the first day back after their extended absence from Parliament Hill:
House of Commons
Hansard
Monday, January 28, 2008Petitions
Autism
Mr. James Bezan (SelkirkInterlake, CPC):
Mr. Speaker, I am pleased to present a petition today on behalf of 150 people from my riding in support of creating extra training in our universities across Canada for autism spectrum disorder. The petitioners ask that members of Parliament look at amendments to the Canada Health Act that include more intense behavioural intervention as well as applying the principles of applied behaviour analysis.
ParticipantDecember 20, 2007
Vancouver Sun
Mother of three autistic boys owes $13,597.64
Provincial audit takes issue with Sunshine Coast resident's use of invoice book and wants receipts
By Pete McMartin
Every three weeks, as regularly as clockwork, Kathy Kyler receives the same bill in the mail.
It asks her to pay $13,597.64.
It is from the Ministry of Children and Family Development's Autism Funds Processing Unit.
Kathy, who is 50, is the mother of three children. She has a 16-year-old boy, Alex, and two 11-year-old identical twins, Evan and Nicholas.
The twins are autistic. Evan is severely autistic and classified as low-functioning — he does not speak — and Nicholas is high-functioning.
Kathy lives on the Sunshine Coast, where autism services are spread thin. She is divorced, which, because of the extreme stress in such cases, is a not uncommon phenomenon among couples of children with autism.
She is also on disability. She receives $24,000 a year. She suffers from hepatitis C, which she believes she contracted during the delivery of the twins at Women's Hospital. Her health is failing, she said, and she needs a liver transplant. She also suffers from a compendium of other ailments — lupus, fibromyalgia, autoimmune disease and, she added, depression.
"I wonder why," she deadpanned.
For the treatment of the twin's autism, Kathy receives from the MCFD in the neighbourhood of $6,000 a year per child. With this, she pays for their therapy and the behavioural consultants she must ferry in from time to time. As any parent of a child with autism can tell you, autism therapies are expensive, exhaustive and bewilderingly varied.
Because the B.C. government leaves it up to parents to choose which therapy they feel is right for their children, the funding is individualized and direct. Parents are then expected to submit receipts to the government to show how the funds were spent.
Since her boys were three, when they were first diagnosed, Kathy did this without incident.
But in April, she received word from the ministry that her file was being audited for the previous year and she would receive no more funds until the audit was complete.
Then in June, she received the bill for $13,597.64, virtually all the funds forwarded to her by the ministry between March 2006 and May 2007.
It seems the ministry was unhappy with Kathy's accounting. For years, she had submitted records of her costs from an invoice book. It was this to which the ministry objected. It demanded receipts as proof of accountability. Thus, the bill.
After weeks of phone calls and e-mails to the ministry, Kathy succeeded in getting her funding reinstated, but the funding would now go directly to her children's behavioural consultants.
The bill, however, stood.
So Kathy turned to the provincial ombudsman to look into the affair. But the ombudsman, she said, sided with the ministry. (An ombudsman official would only say that her complaint "was not substantiated.")
But according to Clair Schuman, executive director of Autism Community Training (ACT), the society the provincial government contracts to provide programs and information to parents of children with autism, Kathy's predicament is not an isolated one. Kathy herself said she knew of at least two other families in her area with the same problem.
"We have been getting an increasing number of calls and complaints [like Kyler's] in the last six months," Schuman said.
"It's not an issue of families not being accountable, it's an issue of the long delay between parents receiving funding and the audits the ministry does. Parents put in their expenses and continue to receive funding through the year, and they assume, I think logically, that if they submit the documents they have been and continue to receive funding, then everything is all right."
Then, a year later, Schuman said, if the ministry finds something amiss in the audit, or objects to a therapy the parents have chosen, they receive a whopping bill.
"So it leaves the parents — especially those most vulnerable — in a real dilemma at the end of the year."
One of those was Debra Pugh, director of research and training for ACT. Pugh, a former foreign correspondent for the Guardian newspaper of London, and as knowledgeable of funding agreements as anyone, was asked by the ministry to remit in the neighbourhood of $5,000.
"The unfairness of it," Pugh said, "is that [parents] have been doing something for the same way for three or four years, but for some reason, the ministry has decided to change the way things are done. But instead of warning parents and saying things are changing, they are telling the parents they have to refund the money without any forgiveness at all."
MCFD Minister Tom Christensen declined to comment on Kyler's case, saying he didn't know "the intricate details of the file."
"There's no question this is a challenging situation," Christensen said, "and we will continue to work with her to ensure the welfare of her children is taken care of."
But because these were tax dollars being directed to parents, he said, there had to be a high level of accountability.
Christensen did admit, however, that "the back end of the process" — that is, the delayed year-end audit — "is certainly taking more time than I would like."
In the meantime, Kathy Kyler wonders how to handle a debt she can't pay.
"I have no way to pay it, no matter what. I'm never going back to work, because I can't. I'm in an incredible amount of pain, and I save all my energy for my children."
pmcmartin@png.canwest.com or 604-605-2905
ParticipantThis 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 fundingSUSAN 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 treatmentFor 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."
—
HIGHLIGHTSRecommendations 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.ParticipantHouse of Commons
Hansard
Friday, November 30, 2007STATEMENTS BY MEMBERS
Autism
Mr. Peter Stoffer (SackvilleEastern 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.
____________
ParticipantWhat 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.shtmlNIMH'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
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