They call their children “medicare’s orphans,” and they are demanding their kids get access to an effective autism therapy under the Canada Health Act.
The therapy is called Applied Behavioural Analysis/Intensive Behavioural Intervention or ABA/IBI, which many research findings, including the comprehensive survey of multiple research projects published this year by the National Autism Center at Randolph, Mass., have supported as evidence based and “established.” During the current federal election, a group of local parents and their allies are launching a campaign called One in 68, hoping candidates will commit to support what they call “medicare for autism.”
The One in 68 campaign takes its name from a finding by the U.S. Center for Disease Control that one child of every 68 born in America is somewhere on the autism spectrum, a spectrum that includes children and adults with symptoms ranging from loss of all language skills, compulsive and repetitive behaviours and uncontrolled aggression at one end of the arc to mildly odd personal styles and flat affect, or lack of emotional reactivity at the other. (The figure in B.C. is one in 69.)
One in 68 has targeted 33 ridings across Canada, and is requesting candidates endorse the remedy the campaign supports — making ABA/IBI treatment for autism one of the core services protected by the Canada Health Act and thus publicly funded for all Canadians who need it. Nine of the targeted ridings are in B.C., with seven in the Lower Mainland and three in Vancouver (Vancouver Centre, Vancouver Granville and Vancouver Quadra).
The ABA/IBI intervention that One in 68 hopes to see funded is based on the scientific principles of the broader field of Applied Behaviour Analysis (ABA). According to the website of Quickstart, Early Interventions for Autism, “IBI is an intensive, comprehensive treatment strategy designed for young children with an Autism Spectrum Disorder. It is typically provided between 18 and 40 hours per week and should begin early in a child’s life, ideally before four years of age.”
The key to the approach lies in analyzing the social skills and practical competencies children on the spectrum lack into small, learnable elements, and then teaching those micro behaviours and positively reinforcing each small improvement.
University of B.C. autism researcher Dr. Pat Mirenda told the Courier she agrees with parents who see ABA/IBI as a “gold standard” treatment, and described the question posed by the One in 68 campaign as “legitimate.” She said that One in 68 is “a great campaign, and one I support.”
(Of course, the ABA/IBI approach has critics as well as proponents, although most research in the field tends to support behavioural interventions such as ABA/IBI as having demonstrated effectiveness. Nevertheless, some commentators see the approach as too focused on “normalizing” autistic children rather than valuing the ways they are differently abled, and others suggest the skills acquired are not sufficiently generalizable or that the program is too rigid.
Even though B.C. does not fully fund ABA/IBI therapy, a statement emailed to the Courier by the province’s Ministry of Children and Family Development indicates agreement with the One in 68 campaign’s enthusiasm for ABA style therapies. A ministry spokesperson wrote, in part: “Currently, the accepted best practice standards for early intervention with children with autism spectrum disorders indicates that effective interventions are those based on the principles of applied behaviour analysis (ABA).”
In the riding of Vancouver Centre, NDP candidate Constance Barnes has gone on record with the One in 68 campaign supporting its goals. Barnes told the Courier she would “cherish the opportunity to take this on.” Lisa Barrett, the Green candidate, told the Courier, “ABA coverage should have been done a long time ago.” Neither Liberal incumbent Hedy Fry (her party’s health critic) nor Conservative hopeful Elaine Allen responded to Courier’s requests for comment.
In Vancouver Quadra, NDP candidate Scott Andrews originally told the Courier he would add his name to the One in 68 web site to indicate he supported the reforms proposed, but later contacted the Courier to say that after consulting with NDP national headquarters, he had to withdraw any pre-election support. Conservative challenger Blair Lockhart did not respond to Courier requests for comment.
Incumbent Liberal MP Joyce Murray said she was not able to say yes to the campaign’s question because her party’s platform calls for development of a national autism strategy in consultation with the provinces and because she had concerns whether signing a pledge to support medicare funding for autism might put her in breach of section 550 of the Elections Act, which she understands prohibits candidates from signing such pledges.
Dr. Sherri Brown, who heads up the campaign, said One in 68 conferred with legal counsel and has been advised that the campaign does not represent a breach of section 550. “We are not asking candidates to sign anything,” Brown said. “[We’re] merely asking candidates to indicate whether or not they will support legislation to cover autism treatment under medicare. We stand by what we’re doing.”
While working on a post-doctoral program at the University of California in San Francisco, Brown, (now a Vancouver resident and political science lecturer at Simon Fraser) learned that her son Quinn had been diagnosed on the severe end of the autism spectrum. Surely, she thought, she could take Quinn home to Canada, where a single-payer health care system would provide him with the expensive, hands-on, one-to-one behavioural therapy he would need to beat the disease.
“We were shocked when we got back to B.C.,” Brown said.
In Canada, Brown learned, the Supreme Court ruled in 2004’s Auton case against parents of autistic children and their argument that the Canada Health Act should mandate funding for ABA/IBI treatment.
Dr. Glen Davies, whose Able Development Clinic in B.C. treats around 130 children on the autism spectrum each year using ABA, said that if diagnosed and treated early (ideally well before school age), between 25 and 33 per cent of children on the autism spectrum “walk right off the diagnosis.”
“Even when the condition does not disappear, 95 per cent of kids who get this treatment see some significant improvement,” he said.
In a letter supporting the One in 68 campaign, Davies wrote: “In summary, ASD [Autism Spectrum Disorder] is a seriously debilitating condition with huge lifetime costs that can be effectively treated with a particular form of treatment.”
According to Davies, ABA treatment “can re-write the life scripts of children on the autism spectrum.”
That seems to be the case for Brown’s son, Quinn, who was diagnosed on the spectrum in May 2013. Quinn, who also suffers from epilepsy, has made significant progress since he has had access to ABA/IBI therapy.
“He has so many new skills now,” Brown said. “He is toilet trained, enjoys painting, has improved his self-care and social skills. ABA/IBI has given him a life, and it’s given us our lives back.”
But in this province, the wait lists and paper work around diagnosis for autism spectrum kids can be so time-consuming that the ideal time for treatment has nearly passed before diagnosis.
According to the Ministry of Children and Family Development, the average age for a B.C. child to be diagnosed on the autism scale is 6.6 years. On top of that, the maximum public funding available here for treatment (up to $22,000 a year until the child is six, up to $6,000 from six to 17) is well below what parents have to pay — if they can — to obtain the intensive ABA treatment for their child.
B.C. currently provides funding to more than 10,600 children and youth diagnosed with ASD and their families — 1,700 under six and approximately 9,500 over six. (In 2004 only 600 kids received such provincial subsidy.) Across Canada, a patchwork of provincial decisions on ABA/IBI treatment creates an uneven and confusing situation, with no province providing full funding and many as slow as B.C. to qualify children even for partial funding.
“I was devastated and depressed to learn all this,” Brown said. “It is hard to realize your child doesn’t matter to the government. It’s lonely.”
Meanwhile, as Brown discovered after her return to Canada, 42 of the 50 American states provide autism treatment for children.
Since her return to Canada, Brown has become a board member of Medicare for Autism Now, and she volunteers as a facilitator for parent support groups through the Autism Support Network of B.C.
“Children with autism are as important and just as much in need as children with measles, diabetes or cancer,” said Donna Celle, who has two grandsons, Gabriel and Dominic, diagnosed on the spectrum.
Bobbi Celle, Gabriel and Dominic’s mother, said that ABA/IBI treatment, which has cost her family more than $100,000 out of pocket, has helped both her sons.
“The therapy had a lot to do with Dominic’s progress, and both boys have come a long way. I don’t like the idea of a country where treatment is available in some places and not in others,” she said.
The Canadian government has recently taken some modest steps, including the creation of the Autism Spectrum Disorder Working Group this year. The Conservative 2015 Economic Action Plan allocates $15 million annually to create new jobs for people with developmental disabilities, including some adults on the autism spectrum, but Davies is not impressed.
“The government has sat on its hands on autism for 10 years and now they are throwing a little money at it. It’s not enough,” Davies said.