‘The community needs to step up’ says caregiver advocate

Dr. Brian Goldman, White Coat, Black Art CBC Radio February 15, 2018

When Dr. Yona Lunsky’s older sister was a toddler, it was recommended that she be placed in an institution. Her sister had a developmental disability.

Instead, her family decided to take her home.

These days parents aren’t given those same recommendations but it can still be a hard choice for resource-strapped families.

“It’s really frightening,” she told Dr. Brian Goldman host of White Coat, Black Art.

“Families make choices to do their very best from the time they begin raising a child with a disability for as long as they can. They want to know that they’re doing that work and society’s out there with them, ready to support them when they need to.”

At 21, youth with developmental disabilities like autism and Down Syndrome age out of the school system. Families are left with little or no help.

‘This is normal. This is life.’

Lunsky remembers making decisions to incorporate caring for her sister in her life, like when she chose to live closer to home.

“It’s not that you’re being held back, that you’re going to live in the same city as your sister. It’s just that that’s what you’d want to do,” she said.

“I always knew I’d be coming back.”

For Lunsky, growing up with a sister with developmental disabilities was normal. “This is life,” she said matter-of-factly, the same tone with which she talks about choosing a life partner.

“When we think about our partners in our life we’re looking for people who love the things we love. And if we love our parents, if we love our sister, and if someone’s sister is that important to them… it’s almost like a litmus test when you see how people respond.”

My sister loves feeling part of synagogue and it means so much to her if you save her a seat – inclusion in places of worship – let’s make it happen! https://t.co/vG4u4sfLaH

— Yona Lunsky (@yonalunsky) February 14, 2018

In a way her life informs her work.

As the director of the Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health, Lunsky’s work focuses on the emotional health of people with developmental disabilities and their families.

In her work she wonders “are we supporting families as much as we can for the whole duration of their caregiving experience?”

Because, she warns, caregivers are often at a greater risk to develop physical and mental health issues.

“If you don’t have the time to notice a problem that is small, then you’re not going to have the time to tend to that issue,” she said.

Team family

The demands of caregiving changes over time. A young child demands more from parents, and, inversely, as parents age, they can do less. In cases like Lunsky’s there are siblings in line to help continue the care.

But not every family has a team.

“We have to really remember that families are doing their best. Some families will have the capacity to be more involved for longer.

The community needs to step up and be there partnering and supporting families to do the work that they want to do.”

Source White Coat, Black Art CBC Radio

 

Stories from this episode

Cake, balloons, goodbye: What happens when your special needs child ages out of the system – A day with Gilly, a teen with autism and developmental delay on the cusp of aging out of the system – and her parents who are expected to pick up the slack.

What it’s like to have a sister with special-needs, AKA Boo-Bear – Clare and Ellery are the sisters of 18-year-old Gillian who has low-functioning autism. They share the many ways in which Gilly has shaped their lives.

Also see
Special-needs youth face ‘big abyss’ after leaving school CBC News
‘Tsunami of teens with autism’ reaching adulthood in coming years CBC News