The following story about grad student research in the School of Social Work is from the CBC website (posted April 4, 2013). The following four MSW students are involved in this project: Shawn Carroll, Kate Muscat, Fen Xing and Pegah Jamshidi.
Survey finds parents upset with province over autism therapy wait times
Close to half of Ottawa parents who have children with autism gave the Ontario government a failing grade when it comes to providing services for their children, according to a survey conducted on behalf of two autism advocacy groups.
The survey of 150 parents from the Ottawa region, conducted by Master’s students in social work at Carleton University, asked parents of children with autism to anonymously share their experiences with a diagnosis, behavioural therapy and speech help, along with how they’ve been coping.
The researchers say the results are primarily descriptive, but they provide a snapshot of what parents in this city are going through trying to care for their autistic children.
While parents who sought private intensive behavioural intervention (IBI) or applied behavioral analysis (ABA) therapy for their children typically waited less than three months, parents who went the public route had much longer wait times.
Children over 4 years old before getting aid
While Ottawa parents said they were concerned about their children before age two, the survey respondents said they visited on average 3.4 health care professionals before their child received a diagnosis, and their children were on average 4.69 years old before they received the public services.
The majority of respondents said they waited anywhere from four to 16 or more months to determine whether their child was eligible for publicly-funded intensive behavioural intervention (IBI) or applied behavioral analysis (ABA) therapy, and then up to another two years to access the therapy, according to the researchers.
“A few people told me they waited four to five years for nothing. Just whole lot of red tape, phone calls, being told to relax, and then nothing happens,” said Shawn Carroll, who along with fellow students Kate Muscat, Fen Xing and Pegah Jamshidi conducted the survey on behalf of autism advocacy groups Autism Ontario and QuickStart.
Carroll and his team also asked parents to grade the government on how it’s doing providing help for kids with autism, and 45 per cent gave the province an F grade.
“People are always going to be somewhat disappointed with government services but I think the amount of low grades show that needs aren’t being met,” he said.
Parents struggle to navigate system
The student researchers also received comments from Ottawa parents describing the impact autism has had on their family.
Carroll said the process to receive treatment was draining on many of the respondents, with couples getting divorced or re-mortgaging their homes while they waited for services for their children.
Quickstart founder Suzanne Jacobson said she hopes to share the results of the survey with CHEO, the provincial government and local school boards.
“It’s really that the parents are falling through the gaps. They don’t understand the system. We really need to develop a system that takes the parent through it instead of the parent trying to find it,” said Jacobson.
Ministry says it is working to make progress
A spokesperson for the Ministry of Children and Youth Services did not directly address the survey’s findings when reached for comment, but wrote in an e-mailed statement they are working to make further progress for and with children with autism and their parents.
The government has more than quadrupled autism investments to over $186 million in 2012-13 so that more children are getting support at home, in school and in their communities, wrote spokesperson Breanne Betts.
CBC News had earlier reported that provincial funding for autism has more than quadrupled since 2003, funding for intensive behavioural intervention has flatlined since 2008.
Thursday, April 4, 2013 in Grad Student Research
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