Temagami, Ontario family say they need more support to care for son with cerebral palsy

A mother from Temagami, Ontario says her family is not eligible for the funding needed to care for her son with cerebral palsy.

While the province provides support for volunteer homes that help children with complex needs, Candice Rogerson said her family was unable to get enough money to keep 14-year-old Tyson safe in his own house.

To ensure the accessibility of the house, the family says they need a hospital bed, a lift and a bathroom renovation.

Rogerson said even with the financial support they are entitled to, his family would lose tens of thousands of dollars.

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

“In order to get this for him at home, I was told I would basically have to give it to volunteers so he could be cared for at someone else’s house.”

If we had the equipment, I wouldn’t need a huge respite budget.-Candice Rogerson

The province’s Homeshare program supports children with multiple disabilities who cannot stay with their own families.

The program offers in-home services, financial and after-hours support, among others.

Rogerson said she doesn’t understand why that support can’t go to parents caring for their children at home instead.

She said her family receives complex special needs funding, which allows them to hire a person of their choice for 40 hours a week to provide 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.

“If we had the equipment, I wouldn’t need a huge respite budget,” she said. “I can get by with a lot less of a lead if his world was safe and accessible.”

Sherry Caldwell, founder of the Ontario Disability Coalition, says families like the Rogersons have been pushed to the brink because they have to pay out of pocket for life-changing equipment. She is pictured with her daughter, Ashley Caldwell. (Submitted by Sherry Caldwell)

Sherry Caldwell, 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 improvement costs are extremely high right now, so they’re trying to get their kids up and down the stairs. We need all levels of government to step in.”

Provincial Funding

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

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

“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 an intellectual and/or physical disability.

Ministry of Health spokesman 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.

“ADP is providing financial assistance for over 8,000 pieces of equipment and supplies,” the email states.

But Rogerson said only a small portion of Tyson’s needs are covered by ADP, and some equipment isn’t covered at all.

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

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

About Antoine L. Cassell

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