Two years ago, Children’s Services Minister Laurel Broten stood on a stage and promised she’d spend $25 million a year to place more autistic children into therapy.
At the time, autism rates in the province were one in 150 kids. Broten’s announcement provided nearly 8,000 more children with applied behaviour analysis therapy, a treatment that teaches children how to communicate and socialize.
“Autism is a relatively new disorder. Ten years ago we knew very little about it — we had only just begun to attempt to respond to the needs of children with autism,” Broten told the assembled guests at Holland Bloorview Rehab hospital on Dec. 14, 2010.
“And today, with the guidance and advice from countless parents, experts and service providers — we have developed a plan to significantly enhance autism supports in Ontario for children and youth across the entire spectrum,” she said.
Sharing the stage with Broten was Dr. Wendy Roberts, co-director of the Autism Research Unit at the Hospital for Sick Children, and, Dr. Stephen Scherer, director of Sick Kids’ Centre for Applied Genomics. Listening in the audience was Marg Spoelstra, executive director of Autism Ontario.
The crowd buzzed with hope. Broten also promised, that day, to strike a committee of experts — doctors, researchers, therapists — to advise the Ministry of Children and Youth Services on the autism services needs in Ontario. The group was to be up and running by the fall of 2011.
It never formed.
Now, the autism rate in Ontario is estimated at a staggering one in 88 children.
Autism is the fastest growing developmental disorder in the world and it lasts a lifetime.
While there have been countless pledges by politicians, who earnestly try to improve the situation, they just can’t seem to catch the ball. It moves too fast, they say.
“Do I acknowledge there is more work to do? Of course I do,” Broten told the Star.
“We have seen a quadrupling of funding for all autism services since 2003. We are now up to $186 million in expanding behavioural analysis. We have 8,000 kids benefitting from those new services. We are continuing to work to provide support for those families.”
Broten promised it is now her top priority to strike the committee and get to work.
“I am going to get working on it right away. We don’t have the folks appointed and it is a priority agenda item for me.”
Health Minister Deb Matthews believes Ontario is “on the right track” concerning autism services. The new committee will keep ministries up to date on the latest research and deficits in care, she said.
However, Matthews wants to see wait times for autism therapy driven down. And services should be provided on the basis of need, not diagnosis. “We should strive to provide care as early as possible,” she said.
Critics for both the New Democrats and the Progressive Conservatives decried the Liberal’s lack of action on autism. Both support a comprehensive strategy and would launch an immediate review of existing services if they formed government.
Community Services Minister John Milloy is the “first to admit” more needs to be done.
“If you are asking me: Do we need as a government to focus more across ministries on dealing with autism spectrum disorders? Of course we do,” he said. “That has been the thrust of a lot of the work we have done in the past and that has been the direction which I see us going.”
The average age for a child to be diagnosed with an autism spectrum disorder in Ontario is 3. It is an agonizing wait for parents who notice, usually from birth, that something is wrong.
What is worse, once given a diagnosis, the wait for services can be as long as four years — a damaging loss of time for a child.
All experts agree, the earlier a child suspected of autism can be placed into treatment, the better that child’s long-term prognosis, Roberts told the Star.
Without provincially funded care, parents are left to reach into their savings and spend as much as $60,000 a year for therapy.
“If it is two years to wait (for) the provincial program, what kind of insurance policies do you have or money do you have available that you can spend on private therapy? Unfortunately, right now, in that waiting game, we have a two-tiered system. And the more disadvantaged you are, the more disadvantaged you will become and your child will become,” she said.
The social injustice of this simple fact is not lost on Braxton Hartman, a well-spoken 15-year-old with Asperger syndrome.
“We are seeing the only difference between an individual spending the rest of their life drugged up in a group home and living on welfare, and, the same person having a happy and successful life, the only difference between those two things is the net worth of their parents.”
Canada is supposed to provide equal health and social service care to all its citizens, he said.
The Charter of Rights “even specifies that according to law, every single Canadian citizen has access to equal rights, including people with disabilities. Autism is a disability,” he said.
What will work, said Roberts, is a provincial strategy. One body to co-ordinate funding and services plus measure and manage wait times.
“We need an integrated service system that will meet the needs of a child once a need is identified. We don’t have that kind of integrated system of care the way we would have for childhood diabetes or childhood cancers,” she said.
“Once you have a diagnosis of autism, it is not very likely to go away. Depending on different stages of environment or changes in development, crises will keep coming up and parents need somewhere to go back to.”
The situation at home often only gets worse as a child with autism ages. Without any daily supports the province is forced to intervene during a crisis situation, said Spoelstra of Autism Ontario.
“As long as we continue to respond in crisis mode things are not going to improve for individuals with autism,” Spoelstra said.
These crises, that have seen several desperate families faced with sending loved ones to homeless shelters or even jail, prompted the Ontario Ombudsman last week to launch an investigation into the province’s services for adults with developmental disabilities.
The six-month investigation will look into whether Milloy’s ministry is adequately responding to urgent situations and whether it is doing enough to co-ordinate, monitor and facilitate access to services for adults with autism and other developmental disabilities.
Milloy said his ministry is already restructuring to handle the autism crisis. Community and Social Services has increased funding for developmentally disabled adults by 58 per cent to $1.7 billion annually since 2003.
However, since the ministry doesn’t collect information by disability, Milloy is unable to say how much of that increase has gone towards adults with autism.
He said new programs such as Developmental Services Ontario offices in each region, which help co-ordinate services, should be given a chance. It was launched in June 2011.
“We have got to make that transition much less dramatic than it is right now,” he agreed.
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