Chronic wait times persist for families coping with autism
TheStar.com – Life – Despite panels and reports, it can still take years to get your child a provincially-funded spot
Apr 17 2015. By: Andrea Gordon, Feature Writer
An autism diagnosis in Ontario comes with two conflicting messages: The faster your child gets treatment, the better. But sorry, you’ll have to wait, often for years.
This conundrum continues for parents across the province, who hear the clock ticking as the critical period for therapy — when children’s young brains are most responsive — passes by.
Chronic wait times persist in the face of damning reports over the past two years from the Auditor General in 2013, an all-party committee on developmental services at Queen’s Park last summer and from parent sessions held by the Ministry of Children and Youth Services, which were never made public but obtained by the Star a year ago.
A clinical expert committee was appointed in December 2012 to advise the government on children’s autism services, but the ministry has not released any of the panel’s findings or recommendations.
Those developments came on the heels of the Star’s Autism Project in 2012, which shone a light on the situation facing children in need of intensive behavioural intervention (IBI), the only sustained treatment paid for by Ontario.
Today, little has changed.
As of a year ago, there were more children in Ontario waiting for IBI (1,957) than receiving it (1,460). In 2012, there were 1,702 on wait lists.
Average wait times ranged from 22 months to 28 months across the province as of March 31, 2014, show figures from the Ministry of Children and Youth Services. But it varies according to where a child lives. In Durham, York and Simcoe regions, the average wait time last year was 39 months, according to Kinark Child and Family Services, one of nine regional centres that manage children’s autism services in Ontario.
That’s an improvement from the four-year wait reported in 2012, thanks largely to some reallocation of funds in the centre. But still, most children weren’t starting therapy until they were age 7, long past the preschool period when it is most effective.
More than half of the regional centres contacted by the Star had even more children waiting in 2014 than they did two years earlier, and four reported wait times were longer.
The province spent $118.9 million on IBI services in 2013-14, up slightly from $115.8 million in 2011-12.
“Unless you can afford private therapy, you’re waiting,” says Margaret Spoelstra, executive director of the advocacy and research group Autism Ontario.
“The fact that kids are getting service much later defeats the purpose.”
Parents who can’t afford to pay for it themselves, at an annual cost of up to $60,000, remortgage homes or borrow from relatives. Some resort to fundraising through events or crowdsourcing. Others pull up stakes and head to other provinces to get help.
Demand is expected to increase, as autism rates have risen dramatically < http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html >. The good news is more awareness has translated to faster assessment and diagnosis. But that leads to a bottleneck as more kids need treatment.
Ontario has promised an autism strategy to address the gaps in services for children of all ages, spearheaded by Tracy MacCharles, minister of children and youth services. But she says there is no timeline yet for when that will be announced. We’re still at the very early stages,” she said in an interview this week.
MacCharles says as the mother of a teenager with special needs, she understands parents’ frustration.
“The wait list, especially on the IBI side, is terribly high,” she said. “That’s a concern to me and a concern to people in the sector. That’s why I want to bring forward a comprehensive strategy that has support at the cabinet level.”
She said the province “has to be very responsive” to the problem of wait times but that no decisions have been made on how that will be done.
The dire situation for children of all ages prompted Dee Gordon of Etobicoke to march 500 kilometres to Parliament Hill in January to deliver a petition calling for a national strategy on autism. That proposal got another boost this month from autism experts and organizations at an Ottawa summit that highlighted the need for a co-ordinated approach across the country.
As Gordon notes on her website, parents “should not have to beg for money to pay for treatment for our children, and we should not have to live in poverty to ensure our children’s well-being.”
< http://www.thestar.com/life/2015/04/17/chronic-wait-times-persist-for-families-coping-with-autism.html >
RELATED:
Toronto family chases autism treatment across the country < http://www.thestar.com/life/2015/04/17/toronto-family-chases-autism-treatment-across-the-country.html >
Parents resort to crowd-funding to get help for son with autism < http://www.thestar.com/life/2015/04/17/parents-resort-to-crowd-funding-to-get-help-for-son-with-autism.html >
Parents flee Ontario for Alberta to get kids autism services < http://www.thestar.com/life/2015/04/17/parents-flee-ontario-for-alberta-to-get-kids-autism-services.html >
Tags: budget, child care, disabilities, Health, ideology, mental Health, standard of living, youth
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