Amanda Telford’s family is not alone.
That has been the reaction from many who watched the story of Ottawa mother, who felt so overwhelmed caring for her 19-year-old, severely autistic son Philippe that she decided to drop him off at an Ontario government agency office and ask them to take over his care.
Telford and her husband say they are simply exhausted from caring for Philippe, who is non-verbal, functions at the level of a two-year-old, and has Tourette’s syndrome and insulin-dependent diabetes.
After begging for help and sitting on wait lists for long-term care placement for years, they felt they had no other choice but to hand him over to the government.
Philippe was taken to a facility he was familiar with that offers respite care. Telford told CTV News on Thursday a home that can care for Philippe for the next few weeks -- and perhaps months -- has been found.
Still, the long-term future for Philippe isn’t clear.
But by taking their story public, the Telfords have managed to spark a national discussion about the lack of support services available to families caring for children and young adults with developmental disabilities.
There’s no way of knowing how many other families are facing a crisis situation similar to that of the Telfords -- simply because there is no nationwide research on autism in Canada.
Data is also lacking on what happens to autistic children as they transition into adulthood, and what happens when their aging parents can no longer care for them.
Liberal Senator Jim Munson, a long-time advocate for autism issues and an honourary member of Canadian Autism Spectrum Disorders Alliance, agrees that Canada is badly lacking services for adults with autism.
He says the only programs that do exist are often organized by individuals and grassroots groups, who are raising money on their own.
“There is absolutely nothing in the way of official services for adults with autism. There’s nothing,” Munson told CTVNews.ca.
Laurie Mawlam, the executive director of Autism Canada, knows many families who are living with children with severe autism and other developmental disabilities and are also struggling. She says families often see autism support services disappear when their children turn 19 or graduate from educational programs at 21.
“It’s every parent’s nightmare … what’s going to happen as they age and can no longer care for their children,” Mawlam told CTVNews.ca.
When Anne Borbey-Schwartz, from Autism Ontario, saw the CTV story about Amanda Telford’s decision, she immediately understood.
“She got to the point where a lot of families (in Ontario) are. She reached out in the only way that she had,” Borbey-Schwartz told Canada AM this week.
Borbey-Schwartz sees families as desperate as the Telfords all the time, she says, adding she probably gets three calls a week from similar families, under more stress than they can handle.
“Even though we often don’t hear from these families until they reach a crisis point, these families are struggling. They’re struggling with daily living and they’re struggling with their own health because their children are at the centre of their days,” she says.
But what makes Amanda Telford’s story unique is that she decided to make her cry for help public.
She allowed CTV News to be there when she dropped off her son and then agreed to talk about it with anyone who’d listen – a move that Borbey-Schwartz commends.
“She wanted to make people in positions of decision-making understand that other families are where she is that they are in a desperate situation,” she said.
Telford says she contacted every level of government she could think of before she made her desperate move -- from her MP, to her MPP, to her local community care access centre. No one could offer her a long-term solution.
“Everybody we dealt with treated us very respectfully, very courteously and in a professional and caring way,” Telford says. “This isn’t about people not doing their jobs. This is about a system being at capacity, and a lack of funding for adults with developmental disabilities.”
Mawlam says the number of children being diagnosed with autism has been on the rise since the early 1990s and the federal and provincial governments should have been preparing for the day when children enter adulthood.
“It’s not going to get better,” she told CTVNews.ca.
“We’ve been saying for quite some time now that this is a public health emergency. Governments need to be working together on this. And they need to get started yesterday.”
