After months of uncertainty for families with children with disabilities, a CityNews investigation reveals that funding for Special Services at Home (SSAH) – a program that provides funding for children with autism and other developmental or physical disabilities – has been frozen since January 2018.
“Last year in March we applied for SSAH, and in June when the new government came into place we were told the program has been put on hold,” explains Aliza Chagpar, whose four-year-old son Qadim has been diagnosed with AngelMan Syndrome – a rare neurogenetic disorder – and has difficulty walking and communicating.
“We’ve been accepted into the program but it’s been put on hold.”
The program funds respite care as well as services for personal development to 28,000 families. But families that applied after January 2018 – even those that were approved for funding – have been put on a waitlist.
“Unfortunately this program is another example of the previous government’s failed policies that left 5,700 languishing on a waitlist, which began in January 2018, after a three-year funding commitment ended in March 2017,” explains Derek Rowland, a spokesperson for Minister of Children, Community and Social Services, Lisa MacLeod. “Children are brought off the list as funding allows.”
He confirms that not one family has moved off that list since January 2018.
“It’s not even a lot of money, but to us it means the world because again that means we can work, it means we can keep on with normal lives, whatever our version of normal is,” Chagpar says.
Nicole Payette-Kyryluk has been down this road before. Her seven-year-old daughter also suffers from a rare degenerative disorder, is in a wheelchair and requires 24/7 care.
“For the first five years of her life the funding was frozen, so we couldn’t apply for funding whatsoever,” Payette-Kyryluk tells CityNews adding that a typical nursing shift costs $400 and SSAH helps her family afford a handful of shifts.
“We had a lot of needs, but we didn’t have access to the funding.”
“It’s not tons and tons of money, but the respite helps us to at least get one night a week for every two weeks basically in the year to get some help with that.”
While funding is typically allocated in February and March for the next fiscal year, she – and 28,000 other recipients – have been in a holding pattern, told to wait until after the budget has been released.
The 2019 Ontario budget did not mention SSAH at all but the government is projecting a $375-million savings from this ministry for next year.
“All 28,000 families currently enrolled in the program will receive a letter in the coming days confirming that their funding has been renewed,” Rowland said in a statement to CityNews.
Peter Tabuns, NDP MPP for Toronto-Danforth, says a virtually frozen wait list is “just really cruel.”
“These are really vulnerable children with parents who are sticking with those kids and they’re sacrificing a lot, to say you’re on your own, we’re not going to help you, good luck, is just unconscionable,” Tabuns tells CityNews from his Danforth office. “You or I would recognize this for the type of cruelty it is. The government shouldn’t be acting like this, it just shouldn’t be.”
This all comes after CityNews revealed earlier this year that the wait list for autism therapy had been frozen by the government and after some parents received letters saying they would receive SSAH funding, only to receive subsequent letters saying their funding was on hold.