Respite program turning into costly ordeal, families say

Some parents of children with physical or developmental disabilities say a provincial program that's supposed to offer their families respite has instead become a burden during the pandemic, costing them time and money.

Special Services at Home (SSAH) is managed by Ontario's Ministry of Children, Community and Social Services. The program provides financial assistance to help caregivers pay for specialized equipment and deal with everyday tasks.

The idea is to give parents more time to dedicate to their children, some of whom require round-the-clock care.

But some parents say they've waited months to be reimbursed for out-of-pocket expenses — more than three times the typical wait before COVID-19 — adding to their stress rather than helping alleviate it.

"The amount of money that we have to outlay for stuff is quite honestly astronomical, and so to finally get approved for a program like that felt like it was really a helpful thing," said Nicole Ullmark, whose 10-year-old son Christopher was on a wait-list for years before finally being approved for SSAH funding in August.

"Now, to be frank, all it's done is cost me money ... and tons and tons of time fighting for this, and I don't have that extra time. So I'm just carrying the financial load of this program."

'More of a burden'

Ullmark's son has a progressive genetic condition that has robbed him of the ability to walk or talk, along with many of his fine motor skills. In addition to SSAH, he was approved for a similar program for enhanced respite last summer.

Ullmark began submitting receipts right away, a process that can take hours each time she files a claim. Since then, she said she's only been reimbursed for about five per cent of the nearly $8,000 in costs she's submitted for everything from help with house cleaning to special ski-like attachments that help Christopher's wheelchair move through the snow.

Ullmark said she and her husband have had to empty their retirement savings to help cover some of those costs, along with the cost of renovations to make their home accessible.

"It's tough as families to have to need any sort of assistance. No one wants that. [But] ... you want it to actually be helpful, and [SSAH is] not," she said. "These are families that really are struggling ... and the last thing they need is more of a burden put on them."

'An added stress'

Dawn Bellefeuille's 17-year-old son Sean has CDKL5 deficiency disorder, suffering regular seizures and requiring 24/7 care.

He's been receiving SSAH for about 12 years after spending four years on a wait-list.

Bellefeuille said before the pandemic, it would typically take between two and four weeks to be repaid for expenses the family incurred, but that has tripled since March. Claims she submitted at the end of August weren't repaid until December.

"It's an added stress that as a parent of a special-needs child we don't need. We have frustration on a daily basis," she said.

Ministry blames delay on new recipients

The problem isn't limited to families in Ottawa. Numerous others across Ontario have contacted CBC with similar concerns about excessive delays in receiving repayments since last spring, sometimes placing them in financially precarious positions.

Last spring, the province did provide families with some funding up front specifically because of COVID-19, but for many that money was spent long ago.

The ministry acknowledged there's been a delay in reimbursing families in more than a dozen jurisdictions east of Toronto, blaming it on the administration associated with 1,300 new families that recently joined the program, as well as pandemic-related technical problems.

"Families can expect to receive reimbursements for November over the next 20 business days," the ministry wrote in an email to CBC late last week.