Autism Parents Seek Clout in Federal Election
Activists target ridings with thin margins.
In the crosshairs: Health Minister Clement
"If my grandchildren had diabetes or cancer, or a condition that put them in wheelchairs, there would be no question about Canada providing them with the treatments they needed. Because autism is less visible and less understood, the government can get away with partially funding its treatment and a shameful patchwork of different programs across the country."
-- Donna Celle, grandmother of two autistic children in Vancouver.
A long-simmering fight between parents of autistic children and Canadian governments over funding for their children's therapy may boil over into this fall's expected federal election. Medicare for Autism Now, a recently formed activist group, means to mount a campaign it calls "The Two Percent Solution" in 14 swing ridings across the country.
In the Maritimes, Ontario and five B.C. ridings, targeting federal Minister of Health Tony Clement and other incumbents who won last time by less than two per cent, the group will press candidates with demands that they support Canada Health Act coverage for autism treatment and full funding for an intensive one-to-one therapy approach.
Clement, who some wags have dubbed "Landslide" Tony, took the Parry Sound-Muskoka riding by a razor-thin .06064 per cent margin in the last election.
Meanwhile, some B.C. families with autistic children are drowning in debt as they struggle to provide their children with therapies they believe will provide important help, therapies that are only partially funded by the provincial government.
Who is Medicare for Autism Now?
Minister Clement was not available for a requested interview over several days of Tyee phone contact with his office as this story was prepared. For at least part of that time, according to press reports, Clement was in Denver attending the Democratic Party convention. However, The Tyee did receive an e-mail from a Health Canada on August 27 that read, in part:
"The responsibility for delivering health services in Canada rests with the provinces and territories and it is at that level that the issue must be addressed. The Canada Health Act (CHA) requires provinces and territories to provide coverage for medically necessary hospital and physician services. The Act does not deal with individual medical conditions. Services provided outside of hospitals, or by health professionals other than physicians, are not insured health services under the CHA. Canada's Government has already begun to address the issues that individuals with ASD and their families are facing."
Medicare for Autism Now, a group that is campaigning to change this federal position, is led by Jean Lewis, a North Shore parent and businesswoman. The group is advised pro bono by David Marley, a gregarious local political consultant. Marley is a former staff member for the federal Progressive Conservative and B.C. Social Credit parties. Lewis's son, Aaron, 14, has been diagnosed on the autism spectrum. Marley has no direct family ties to the issue, but says he first became interested in the 1970s, when a then girl friend's parents adopted an autistic son.
The two say they are determined to change the face of Canadian medicare and rescue a generation of autism-diagnosed kids.
"As a veteran American senator once observed," says Marley, "politicians see the light when they feel the heat. We launched the Two Percent Solution in five ridings in the last elections, and I believe we had some impact on the outcome in two of them. We punched above our weight the first time, and I think this time out the campaign has real potential for democratic renewal. This isn't a partisan effort. It's an attempt to reverse a stupid policy.
'Orphans of the system'
"Putting autism under medicare could be a national issue this time," Marley continued. "The current policy is just wrong. For one thing, it costs a fortune in costs when kids aren't helped and have to be warehoused later in life. The status quo is shameful, especially when Canada considers itself a compassionate country. These children are the orphans of the health care system and we want medicare coverage to cover the costs of an effective scientific cure for autism."
Marley says he predicts the next election will result in another Conservative minority government, but hopes that Medicare for Autism Now's targeted campaign will have enough impact to promote reform.
"We want to hang a few candidates in the window this time," he says.
Marley told The Tyee that most Canadians support his group's demand. He says that an Ipsos-Reid poll taken in 2004 showed that 89 per cent of Canadians support medicare coverage for autism treatment.
But this isn't just about election tactics and backroom strategies. It's also a story about the Celle brothers and their beleaguered family.
In a bright, cheerfully cluttered old house on Vancouver's east side, Dominic bounces down the stairs with a Lego airplane he's just built and engages a visiting Tyee reporter in chatter about the toy. Dominic Celle, 8, and his six-year-old brother, Gabe, have both been diagnosed with Canadian children's most common neurological disorder, autism. Both brothers make direct eye and verbal contact with a visiting stranger, unlike the deeply damaged kids The Tyee reporter remembers from work in a camp for special needs kids in the 1970s. During the afternoon, the brothers work with their therapists, chat happily with their mother and grandmother and play raucously with a gang of friends over for a play date.
The Celle family gives the credit for their boys' improved social and cognitive skills to an intensive program of one-on-one therapy administered by a team of therapists from B.C.'s Early Autism Project, a private sector firm that delivers the detailed therapeutic approach pioneered by California physician researcher Ivar Lovaas.
Deep into debt
Like many of the over 5,000 families in B.C. with children diagnosed on the autism spectrum, the Celles have had to go deeply into debt to pay most of the costs of this expensive approach. Bobbie Celle, the boys' mother, told The Tyee on a summer afternoon recently that the Lovaas-based Applied Behaviour Analysis (ABA) has made an immense difference in her children's development. She wonders why the B.C. government will only cover part of the nearly $100,000 dollars a year it costs her family to provide life-transforming therapy and day-to-day care for Dominic and Gabe.
In the wake of a series of court cases brought by parents of autistic kids since 2000, the province will provide families with funding for autism treatment of up to $20,000 a year until the child is six. After that age, the money available for private therapy falls dramatically to a maximum payment of $6,000. Autism treatment funding varies widely across Canada, with Alberta and Newfoundland paying $40,000 a year, or more, per child, Saskatchewan $25,000, Manitoba only $6,000, while New Brunswick, like B.C., pays up to $20,000 a year for treatment.
ABA therapy involves as much as 35 hours a week of intensive one-on-one therapy for each child administered by a team of five therapists. In the Celle household, much of the work goes on in a room on the living room fitted out as a purpose-built classroom full of toys, books and the massive binders full of detailed behaviour modification programs designed to isolate small elements of behaviour and positively reinforce each successful accomplishment, with meticulous records kept for each behaviour change. The therapists are typically university students, like Angie Ho, who was working with Gabe when The Tyee came to visit, led and supervised by a qualified behavioural consultant.
The process requires extensive involvement by supportive family members like Donna Celle, the boys' grandmother, and their father, Peter. At one point, the Celles calculated that 22 different people were actively involved in Gabe and Dominic's treatment and care each month.
All this work and expense has paid off, they say. For example, Gabe, diagnosed at two, had no language facility at all. After only nine and a half months of therapy, his recognition vocabulary was in the low normal range.
"This change is an indicator of the kind of progress the boys can have with help. We don't know what they'll be like as adults, but we can be sure they'll be more capable than without the program," says their grandmother.
Provincial funding to support this therapy program, partial at best even before age six, plummets to only $6,000 a year to families for each child when they are old enough for school.
Schools picking up the burden: Christensen
About Autism
Autism is the most common neurological disorder affecting children and one of the most common developmental disabilities affecting Canadians. With a prevalence of around one in 150, the autism spectrum disorders change the way the brain processes information and can affect all aspects of development. Classic autism usually appears during the first three years of life. Autism is four times more common in boys than girls, and it affects more Canadian children than Downs Syndrome.
The B.C. government estimates there are approximately 6,000 children with autism in the province.
According to the Autism Society of Canada, there are five Autism Spectrum Disorders described under the diagnostic category of Pervasive Developmental Disorders (PDD) that appear in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) of the American Psychiatric Association.
Three of the Pervasive Developmental Disorders are most common and are usually what is meant when people speak of autism these days. They are Autistic Disorder (also called autism, classic autism and AD), Pervasive Developmental Disorder -- Not Otherwise Specified (PDD-NOS) and Asberger Syndrome.
Individuals with ASDs have varying degrees of difficulty in social interaction and communication and may show repetitive behaviours and have unusual attachments to objects or routines. In the most extreme cases, the child seems almost inaccessible, trapped in a non-verbal world of rocking, hand flapping and other physical tics. In 2007, a national symposium on autism research was held in Canada. The presentations at the symposium are available here.
--Tom Sandborn
The rationale for the reduction in provincial support for ABA therapy when Dominic and Gabe reach school age, B.C.'s Minister of Children and Family Development Tom Christensen told The Tyee, is that the province's schools receive an extra $16,000 per year for each student diagnosed on the autism spectrum.
Christensen says that his government's investment in autism services has increased 12-fold since 2000, from $3.4 million to $43 million, even without including the increased spending in schools. He refused to comment on the question of whether he would support Canada Health Act coverage for autism therapy, and defended the decision taken by the Campbell Liberals to fight and finally defeat the demands of parents of autistic children for full treatment funding in a court battle that went to the Canadian Supreme Court in 2004.
This court battle, an appeal initiated by the previous NDP government, ensued despite Liberal expressions of support for parents while in Opposition, including this from Colin Hansen, now B.C.'s Minister of Finance:
"It is time for the government to stop hiding behind the courts. Let's get on with providing treatment to children as the courts have ordered."
Rich Coleman, now Minister of Housing and Social Development, told the Langley Advance News, "This (appeal) disgusts me completely. I'm so mad. The Government should make the decision to fund."
During this period of great expectations, Gordon Campbell told a concerned parent, according to Families for Early Autism Treatment BC: "The NDP decision to appeal the recent ruling of Madam Justice Allan reflects a government that has consistently failed to act in the best interests of children."
"The medicare question hasn't been given any substantial thought," Christensen told The Tyee. "We are working with the federal government on initiatives to help, including a new research chair at SFU. On the question of going forward with the Supreme Court case, I wasn't in Opposition when the statements you mention were made, so I can't comment. However, once you get into government you have to listen to the best legal advice and that's what we did."
Christensen did tell The Tyee, however, that B.C. government policy reflects agreement that ABA is an effective approach.
"It's the most supportable treatment now, I think," he said. However, Christensen said that he had not met recently with Families for Early Autism Treatment, the province's most vocal advocate for ABA autism treatment.
Parent group not persuaded
Christensen said his staff had told him that the $20,000 annual cap on payments to parents to fund autism treatment was often not fully expended by families qualifying for the money. He pointed out that the number of families receiving therapy support for their autistic children had gone up from less than 500 to over 5,500 since 2002.
Jean Lewis of Medicare for Autism Now is unpersuaded. She says if families are not expending the $20,000 a year, it is because they are having trouble finding qualified therapists in the province.
A note of clarification received by The Tyee from Minister Christensen's press aide seems to support Ms. Lewis's read on the question of parents under-spending the money provided by the province for autism treatment. Kelly Gleeson forwarded the following e-mail on Aug. 28:
"The ministry's program area conducted a three-month sample of autism funding (under six agreements), which ended in January, February or March of 2008: 82 of 122 families (67 per cent) utilized all of their funding.
"Program does suggest, however, that particularly in rural and remote areas, this result is impacted by challenges that families face in locating qualified service providers."
"We have an under-capacity problem at the consultant level," Lewis says. As for the proposed SFU research chair, she says it isn't what's needed most.
"The chair is political, something to put in the window as an election nears. We know the chair should be putting out qualified consultant-level professionals, not doing more research comparing therapies. The research has been done for 40 years and the best available is Applied Behaviour Analysis. Parents of newly diagnosed children often can't get a consultant or have been misdirected into speech therapy, which is not useful until ABA has helped a kid get speech."
Clair Schuman, who heads up Autism Community Training, a not-for-profit province-wide information and referral service created to support families of children with Autism Spectrum Disorders, says she would like to see government funding increased to reflect the real costs of autism treatment.
"We need a system across Canada so all children are entitled to the treatment they need." When asked about the Medicare for Autism Now demand for coverage under the Canada Health Act, Schuman told The Tyee:
"This is a necessary treatment. I don't care what body provides it. Adequate treatment is what's important."
'Nonsensical' cutoff
Schuman, a trained social worker with an autistic son of her own, is sharply critical of B.C.'s current policy of reducing available treatment funding for families when their autism spectrum children reach school age. She says that the government's rationale, that school activity can substitute for one-on-one therapy at home, "just doesn't happen. That money is necessary. The birthday cut-off is nonsensical." She said that a strong body of evidence exists that ABA treatment is the most effective for autism, and more effective when treatment starts early.
In contrast with government documents that claim there is no wait for treatment once an autistic child is diagnosed, Schuman says that there are long wait lists for therapy in the Fraser Health Region.
"This is a real stress for families, children and the whole system," she says.
Andrea Finch is a Vancouver lawyer who has a seven-year-old son who was diagnosed on the autism spectrum when he was two and a half. She says one of the worst stressors for her is uncertainty about the future of the ABA program funding her family receives to help defray treatment costs.
"What strikes fear into me is the prospect of a letter from the government announcing changes that won't respect the individualized nature of this therapy," she told The Tyee. "Of course treatment should be covered under the Canada Health Act. Society is going to pay one way or the other. If these kids aren't helped now, we'll have to deal with them when they are full grown and non-coping adults, and parents can no longer care for them."
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The Vancouver Sun's Don Cayo's first heart attack was treated in Florida and he trashed the care he might have received here. Now he's changed his tune. - BC Health Pays to Restore Man's Foreskin
Landmark patient calls circumcision 'human rights abuse.' - Canada's Health Care 'Crisis'
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![[Tyee]](http://thetyee.cachefly.net/ui/img/ico_fishie.png){kind=small}
cece
01-09-2008
The Autism Funding Vacuum
Yet again, parents of children with autism spectrum are lobbying for more money. I don't disagree that many children with ASD benefit from their therapies, but the issue simply infuriates me as the parent of a child with Down syndrome who would also benefit from extra therapies that are COMPLETELY unfunded by any level of government. Every time I hear a parent of a child with autism talk about the videos they get or the books they've ordered or the equipment they've installed in their home or the respite worker they've hired, I want to cry. My daughter is 4 and still not walking independently!!!! Where is the help we need?? She can't talk coherently, but I can only get a speech therapist every 3 to 6 months. She's 4 years old and she's certainly not going to get any help in a public school classroom - all the help goes to kids with FASD, Autism and behaviour disorders. Quite frankly, I hope politicians have the good sense to ignore these people. There are more kids out there that need help, too.
Birch
01-09-2008
Schools pick up the difference?
According to the article, "the province's schools receive an extra $16,000 per year for each student diagnosed on the autism spectrum."
The weasel word here is "diagnosed." Some autism cases mask themselves as simple misbehavior or emotional difficulty. Both teachers and parents could/can be fooled. Further, school districts are loathe to pick up the tab for special needs testing, a process which may pick up cases that require addressing with extra professional help in the classroom, a staffing level boards can't or won't afford. Numerous children go untested, despite recommendations from teachers that tests be done, simply because boards can't afford it.
Waiting for school districts to kick into action on this issue, for most parents, will be a long wait.
gordon
01-09-2008
statistics
Recently i heard some staggering statistics on the increasing autism rates. I believe the rate was 1 in 44,000 20 years ago, and is now 1 in 150, and anticpated to be 1 in 75 within a couple years if the current rate continues. To me these numbers are staggering. Personally i believe that business and industry are to blame for this disease as they pollute our environment and produce all kinds of products that contain any number of compounds that injure humanity.
Whether we wear it, eat it, live in it, drink it, or are exposed to it, industry is killing humans animals and the planet and they refuse to show any responsibility for their products nor caution in their actions.
This is a sad commentary on the state of our world, where the electorate has been relegated to the role of consumer to feed the corporations and their stockholders. Take back your world while you still have the ability to do so.
SLP2008
02-09-2008
speech therapy not useful?
I would like to voice my objectections regarding this statement:
"Parents of newly diagnosed children often can't get a consultant or have been misdirected into speech therapy, which is not useful until ABA has helped a kid get speech.""
I do agree about the first part, it is unfortunately ridiculously hard to get a consultant at this time, especially in the Vancouver area. However, stating that parents are being "misdirected" to speech, which is "not useful" is just an utter misstatement. I have worked with plenty of autistic children while they were waiting for ABA treatments to begin and had increased vocabularies from 0 words to many, as well as working on interaction skills which many ABA programs do not do. Please do not be misled and think that all Speech Pathologists do is work on speech!
On another note, I would like to agree with cece's comment as well. Why should the autism families get all the money? There are plenty of children out there with other difficulties getting nothing or next to nothing. In my work in the public sector I have worked with so many families below the poverty line who have waiting for over 2 years to get services because they can't afford to go private. The government needs to look out for all of the children, not just those with the most educated and vocal parents.
mopled
02-09-2008
Treatment
There are treaments for both Autim and Downs that the medical establishment refuses to recognize. The government would rather have the parents sqabbling about who gets or needs more of a very limited pot than provide or even allow effective treatment.
In the long run treatment and recovery is cheaper on the public purse and these parents deserve support.
http://altonweb.cust.he.net/cs/downsyndrome/index.htm?page=orthods.html
http://www.autism.com/treatable/recovered/recovered.htm
spedteacher
02-09-2008
Funding and Schools
In recent years, parents of children diagnosed with autism have been the loudest. I guess the government's policy is that the squeaky wheel gets the grease. It's unfair and unjust but it seems to be the way things go these days. From what the parents that I have worked with have told me, the money provided to families doesn't even come close to covering all the extra costs and I think that some of it comes from the Ministry of Children and Families.
In regards to the $16,000 schools are funded for autistic students ... Not every student diagnosed with autism receives the full $16,000. The amount is dependent on level of service deemed necessary by special ed. administrators, etc. That money is to be used to pay for the student's special ed. teacher and teacher assistant time at school. Whatever is left over can be used for additional programs, etc. (At least that's always the way it's been at schools I've worked at).
SLP2008, I cringed when I read that comment about SLP support too. I used to live in a small town in northern BC. We did not have the luxury of ABA consultants so those of us at the school level (along with the parents) worked with our SLP, OT and school psychologist to develop the best programs for autistic students that we could. Just because there was no ABA consultant available did not mean that our students didn't make any progress.
As far as schools being "loathe to pick up the tab for special needs testing", in my experience the exact opposite is true. If we thought that a student would qualify for Ministry funding then that student jumped ahead of other students on the waiting list for assessment. The school doesn't get the funding unless the student is assessed and diagnosed to fulfill Ministry requirements for funding. But, as far as autism goes, medical personnel make that diagnosis not school district folks.
Name
02-09-2008
Nonsensical funding policies...
The story and comments highlight the total lunacy of BC's approach to funding therapies and supports that can help children overcome/cope with developmental disability.
It's akin to a health policy that says everyone with cancer gets $10,000 to spend on treatment - no matter how malignant, advanced or benign the individual's case might be - and then everyone with heart disease gets zero.
It is totally ridiculous to fund therapy for all children with autism and to provide nothing for, say, a child with Down Syndrome (and I say that as the parent of a child on the autism spectrum).
It is also totally ridiculous to give every child with autism the same amount of money, regardless of their need. My kid is older and doing fine and no longer requires intensive therapy and yes, I cannot spend the money we get. I've had over $2,000 of your tax dollars sitting in a special bank account for 2 years because government insisted on giving us the money up front. Yet I know there are hundreds of families of kids with autism or other challenges bankrupting themselves, who could really use those dollars instead.
Meanwhile, what my child really needs is extra support in school so that he can graduate and support himself as an adult instead of depending on the state. But the nonsensical BC Liberal funding policies do not allow us to spend those CLBC dollars in school, where they are desperately needed, so they sit there wasted, doing nothing.
Professionals in the field have been urging government for years to review their policies so that available dollars are focussed and allocated based on need, not diagnostic labels or Ministry turf.
But no, that would be just too sensible. Instead, this government is going in the opposite direction, for example the recent decision to exclude anyone who has an IQ over 70 - a ridiculous new eligibility criterion for a population where IQ is an increasingly meaningless predictor of need or adaptive capacity, especially among those with autism spectrum disorders or Fetal Alcohol Syndrome. And again, a decision that will hurt taxpayers because all those individuals with IQ over 70 will instead have to rely on far more costly crisis intervention services - hospital emerg, police, justice system, ambulance, etc...
It's a fiscal crime and a human tragedy based on pure stupidity!
Name
02-09-2008
Don't blame parents...
In response to comments from Cece and others, let's not blame the parents who have fought -- as any parent would -- for the support their children so desperately need.
It is the government that has chosen to respond in a manner that is blatantly inequitable. Many autism parents continue to advocate for such supports being made available universally, based on need, not labels.
A classic example came to light this summer, after revelations that Premier Campbell privately committed $20 million to one well-connected family who wants to construct a high-tech building with swimming pool and sports centre for children with autism. An online poll showed most parents of children with autism thought this was a blatant waste of money and that the $20 million should go to expanding the availability of services delivered locally for all -- i.e. that it should go to individuals with all disabilities, not just autism.
Having seen the benefits of effective intervention for ourselves, whether it's ABA, special ed, SLP/OT, social skills training, etc, who would not want to see these things made available to every child, youth or adult who needs it?
dorothy
02-09-2008
time to take another direction altogether...
"I believe the rate was 1 in 44,000 20 years ago, and is now 1 in 150, and anticpated to be 1 in 75 within a couple years if the current rate continues"
Something is wrong with this picture! The approaches we are choosing now are obviously of a class with trying the same method and expecting a different result, i.e. the hallmark of insanity. It is time to stop trying to fix this by individual treatment, and instead take a step back and endeavour to find out, what part of the big picture it is we are not seeing. We should go looking for parameters that can explain this tremendous increase in cases, and raging broadly against 'industry' is not enough. I know, I know, it is not considered politically correct to suggest that this was avoidable, that people or even possibly families are partly responsible for the damage through their choices, but forget the blame thing for now, as we are/were all acting in the best of faith, until whatever it was hit us in the back. Try to be objective. It seems vital to me, that we do solid research and get real information in extremely short order, or else this may develop into a problem we will have no chance of handling, not to mention that even with the bestest and mostest help, we are still offering these children as well as their 'regular' siblings and others around them a pretty crummy set of choices. We really need to do better.
Name
02-09-2008
It's not that easy...
If there were a simple answer, Dorothy, they'd have found it by now. Instead, it's looking increasingly like "autism" is an umbrella for a cluster of symptoms that may have diverse and complex causes.
Yes, we should try everything possible to "plug the dyke". But that won't stop the need to respond to those with autism and/or other such labels, who will always be amongst us.
If we step out of our "neuro-typical" box of perception, as young adults with autism are increasingly demanding, and recognize these invidividuals as differently abled, it sheds a whole different light on the issues and challenges. Basically, it can be argued that we have tacitly agreed, for the sake of convenience and efficiency, to configure a world that caters to the neuro-typical majority, and in doing so it is we who have created the "disability" among those who don't fit comfortably within the arbitrary parameters we have set to define what we deem to be the "norm".
Whether that's right or wrong doesn't really matter. They're here and we either have to adapt our world to accommodate them or provide the necessary supports to allow them to live in that world with the same dignity afforded to other human beings. Our most fundamental principles of morality dictate that we can't single out and deny this to any group, although that is exactly what we are doing.
dorothy
02-09-2008
Uh-uh, I don't buy it.
“If there were a simple answer, Dorothy, they'd have found it by now.”
Not necessarily. Man as a species excels in not being able to see the forest for the trees.
“Yes, we should try everything possible to "plug the dyke". But that won't stop the need to respond to those with autism and/or other such labels, who will always be amongst us. “
I don’t believe I said that. I said it isn’t enough.
"Basically, it can be argued that we have tacitly agreed, for the sake of convenience and efficiency, to configure a world that caters to the neuro-typical majority, and in doing so it is we who have created the "disability" among those who don't fit comfortably within the arbitrary parameters we have set to define what we deem to be the "norm"."
I see this thinking as a major cop-out. In the world without our configurating hand, could these people survive on their own? If no, their disability is real, not imagined or ‘defined’. The norm has become the norm, because it works. If it is possible to find real causes for these real problems, we should focus on that, not just be done with treating symptoms and applying band-aids, however much of an industry we can make out of that. From the numbers, it is obvious that the problems these people suffer from are man-made. We must find out how we did that and unmake them. It is our mess, and we must clean it up.