Temagami, Ont., family says it needs more support to care for son with cerebral palsy

A mother from Temagami, Ont., says her family does not qualify for the funding she needs to care for her son with cerebral palsy.

While the province provides support to volunteer homes which help children with complex needs, Candice Rogerson said her family does not qualify for enough money to keep her 14-year-old son Tyson safe in their own home.

Some of the things they need include a hospital bed, a lifting device and a bathroom renovation to ensure it’s accessible.

Rogerson said even with the financial support they do qualify for, her family would be out tens of thousands of dollars.

“And I just don’t see how that’s fair,” she said.

“In order to get that for him at home I’ve been told I’d essentially have to give him away to volunteers so he can be cared for in someone else’s home.”

If we had the equipment then I wouldn’t need a massive budget for respite.– Candice Rogerson

The province’s Homeshare program supports children with multiple disabilities who aren’t able to remain with their own families.

The program provides things like in-home services, financial and after hours support.

Rogerson said she doesn’t understand why that support can’t go to parents like her instead – who care for their children at home.

She said her family receives complex special needs funding, which allows her to hire someone of her choice for 40 hours a week to provide some respite care for Tyson.

But because they don’t have the necessary equipment in their home, Rogerson said Tyson needs two-to-one care, which means she has to be home at all times to help out. 

“If we had the equipment then I wouldn’t need a massive budget for respite,” she said. “I can get by on much less moving forward if his world was safe and accessible.”

Sherry Caldwell, the founder of the Ontario Disability Coalition, said families like the Rogersons have been pushed to the brink.

“Families won’t get a wheelchair accessible van because it’s not in the budget,” Caldwell said.

“Home renovation costs are extremely high right now so they’re trying to lift their children up and down the stairs. We need all levels of government to step up.”

Funding from the province

In an email to CBC News, Ministry of Children, Community and Social Services spokesperson Subhraj Riar said the province has invested $240 million over four years to support children and youth with special needs.

“This investment will ensure more children and families can have better access to clinical assessment, rehabilitation services, and other critical early intervention services when they need them,” the email said.

“We are also investing an additional $132 million over five years in the Special Services at Home program. The Special Services at Home program helps families caring for a child with a developmental and/or physical disability.”

Ministry of Health spokesperson Bill Campbell told CBC News in an email that the province’s Assistive Devices Program (ADP) supports Ontarians with long-term physical disabilities, including children.

“The ADP provides funding assistance for over 8,000 pieces of equipment and supplies,” the email said.

But Rogerson said only a small portion of what Tyson needs is covered through ADP, and some pieces of equipment aren’t covered at all.

The mother described Tyson as sweet, kind and funny. She said there’s no way she’s sending him to a home to be cared for by others.

“It would devastate him and it would devastate our family, he’s our son.”