'The community needs to step up' says caregiver advocate

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.

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"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.

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'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."

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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."

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.

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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."