CANADA
No time for waiting: Parents of autistic kids turn to private care
Hundreds of area families are turning to a private health service to get their children treatment for autism and other developmental disabilities because of long waits and gaps in publicly funded care.
A growing company called blueballoon has 1,400 clients in the Hamilton and Burlington area who pay as much as $125 an hour to get their kids help with a wide range of issues, from autism to Down syndrome, learning disabilities to cerebral palsy and problems with bullying.
Paying privately is sometimes the only way to get access to optimal care, acknowledges Dr. Peter Szatmari, who heads McMaster University's division of child psychiatry and is considered one of the world's leading experts in autism spectrum disorders (ASD). Even McMaster Children's Hospital, which has among the best autism services in Canada, needs more resources. "I think Ontario in general is under-resourced with respect to providing a spectrum of services for kids with ASD," he said. "There are big gaps in our service delivery system."
One problem is waiting lists. Szatmari says parents faced with a wait of at least three months for diagnosis and two to 18 months for treatment can't be blamed for looking to get faster care privately because it can make a big difference in the results. "There is good evidence that the intensity of the service early on is associated with better outcomes, so the more services you can get, to some extent, the better," said Szatmari, who is director of the Offord Centre for Child Studies.
A wide variety of services with little to no wait is exactly what blueballoon offers. The health service requires no referral and has locations in Burlington, Toronto, Aurora and Waterloo that are open seven days a week with evening hours.
It was started by a brother and sister six years ago when he couldn't find help for his son and she couldn't find a workplace with the facilities and resources she wanted to do her job as an occupational therapist. Steve and Heather MacEwen teamed up and created blueballoon -- named after a lone balloon that floated away from a bunch at a birthday party for the boy who has issues similar to Asperger's syndrome but as yet doesn't have a diagnosis.
"The services are needed," said Heather MacEwen. "Accessing services in a timely manner can be very challenging. And the other piece of it is that we do have some very specialized techniques that we can provide to kids that may not be available in a hospital or a school."
The private health service offers individual and group programs in physiotherapy, speech and language pathology, music therapy, occupational therapy, psychology and behavioural therapy including intensive behavioural intervention (IBI).
Denise Nacev says without blueballoon her son would be waiting for care instead of getting it. Six year-old Andrew Nacev has a mild intellectual disability and selective mutism, which is an inability to speak in certain settings. Her pediatrician suggested blueballoon three years ago. The Burlington mom and her husband spend about $500 a month on therapy for Andrew. Some of it has been covered by private insurance but much of it has been paid out of pocket. "It's worth every penny," she said.
When Andrew started, he couldn't hold a spoon and now he can deliver a book report to his class. "My husband and I were very adamant that we didn't want him to lose out on something because he had to wait for it," she said. "It would have been slower to get the services if we hadn't gone privately."
Nacev uses whatever government-funded services she can get for Andrew, but it has taken a year to get into the latest treatment that he will start in the fall. She says if she'd relied solely on the public system she doubts Andrew would be moving to Grade 2 with his peers in September.
Paris Meilleur, spokesperson for the Minister of Children and Youth Services, says the provincial government has dramatically increased funding and accessibility to programs for children with autism and other developmental issues over the last seven years. "We know that there is more to do. We know it is so hard for parents who are waiting for services for their kids. We're determined to continue to make progress for those kids and for those parents because it's a real challenge. We absolutely recognize that."
Szatmari says improvements need to be made to ensure treatment doesn't depend on parents' ability to pay for private services like blueballoon. "I think these are programs that need to be universally funded for everyone who needs them."
Joanna Frketich
31 August 2010
http://www.thespec.com/news/local/article/252505--no-time-for-waiting
