Saskatoon

Sask. mother of disabled child says tepid COVID-19 response highlights long-term issues

Families living with adult disabled children say COVID-19 is making a challenging situation even more difficult for caregivers.

One-time cheque for $50 'the joke of all jokes,' says Margaret Kress

Margaret Kress, left, and her daughter Mackenzie on a recent walk. (Margaret Kress/Facebook)

Margaret Kress says things were already tough before COVID-19 took away what little government support she had to help care for her 25-year-old intellectually disabled daughter Mackenzie.

The single Mom and adjunct university professor had been getting 15 hours a week of help, with two workers taking Mackenzie out into the community to meet other young people and serving as mentors.

But that ended with the COVID-19 physical distancing and isolation restrictions. Kress said she's on her own now and that the pandemic is hammering a group of people who were already struggling. 

"Her housing care and her practical care and personal care is done by myself, and I'm a single parent," she said.

"So that means I have to find respite or other forms of care ... and respite is very, very hard to come by."

Kress said the government needs to step up with specific aid for parents taking care of adult disabled children. She said the issues are day programming and housing.

On March 31, Social Services released its pandemic response plan online. It touched on emergency shelter support, help for the homeless, youth in custody, child and family programs, affordable housing and rent.

There is no specific mention in the release about help for families with adult children who have physical or intellectual disabilities.

Wyndham Thiessen knows the challenges parents like Kress are now facing. He's executive director of L'Arche Saskatoon, which operates two homes for disabled adults.

Thiessen said the homes normally offers day programming for people who don't live in the homes, in addition to each providing accommodation for four people.

But no more.

"We tried going for a couple weeks and realized we're just going to have to stop, for everyone's safety," he said.

"For some families, they've lost a huge support. Having their son or daughter attend the programming during the day gives them a bit of a break." 

Not only did these families lose a valuable support, Thiessen said, but finding a replacement mentor or caregiver is about more than having money.

"Even if you had money to hire someone to support your son or daughter, given the restrictions it's not supposed to happen," he said.

Kress acknowledged that parents like herself have not been completely ignored by the government. In early April, she got a $50 cheque from the province "to help address the extra cost of isolation," according to the accompanying letter.

"The joke of all jokes came through," she said.

Kress said the money does nothing to help with her cost of living. Caring for her daughter full time is affecting her ability to work.

"We do a lot of walking. We try to do other things but it's still it's a real imposition on me and the work that I want to do," she said.

 "I can't take any chances with a person like her who could possibly pick up something more easily than another person."

A spokesperson for Social Services said most day programs are closed to protect the safety of the individuals and staff, but that case managers are still reaching out to clients by phone weekly to see how they're doing and make sure their needs are addressed. 

The spokesperson confirmed that there was no specific money for families with disabled adult children in the March 31 Social Services pandemic response plan.

ABOUT THE AUTHOR

Dan Zakreski is a reporter for CBC Saskatoon.