Housing support for adult children with severe autism is 'absolutely absurd,' say parents

CTV National News: Limited special needs support Heather Butts explains why several parents of adult children with special needs are struggling to find affordable care.

Looking after an adult with severe autism can be a full-time job. Ask any parent who has a child severely affected by autism spectrum disorder – it’s a job that can get more difficult as the child becomes an adult.

“It basically requires a commitment of time, energy, financial resources, everything. My career was completely sidelined,” said Andrew Kavchak, whose 23-year-old son Steven has autism, intellectual disabilities and is also non-verbal. Between the stress at home and stress at work, Kavchak felt he was at one point “about to blow a gasket,” so he took early retirement.

The minute Steven turned 18, he was eligible to be placed on a list for a group home. But to actually find an available space, the Kavchak family was told it could take several years. Now, five years later, he’s being told it will take more like 20-30 years, with some parents caring for their adult children well into their senior years.

“My wife and I do our best, but it’s exhausting. And the fact is that, as we get older, it’s not going to get easier, right? So, the whole thing is profoundly depressing,” said Kavchak, speaking with CTV from his Ottawa home as he cared for his adult son.

This family is not alone, it’s a reality for thousands of families right across the country. In Ontario, the province currently provides supportive living services for roughly 18,000 adults with developmental disabilities. The demand far exceeds that availability.

Will more services open up?

A report by the Financial Accountability Office of Ontario reviewed the spending plan of the Ministry of Children, Community and Social Services. It projected that there will be no growth in the number of clients served.

“From 2017-18 to 2022-23, the number of people waiting for supportive living placement increased 49 per cent, from 18,152 in 2017-18 to 27,028 in 2022-23.

As parents wait, they age, and their children grow, making the care even harder. “They are stressed, and they are frustrated, and they have every right to be stressed and frustrated,” said Stacey Feldt, Youth Transition Resource Specialist with Autism Ontario. She helps guide families through a complex web of services and supports available and the transition when those all change at age 18.

“It’s not easy for people without autism, and without a disability, to navigate those things,” she said, describing the complex physical and psychological changes experienced in the early years of adulthood.

“Now, add autism, and being a parent who is aging, and whose body can no longer do the same things it once could do.”

This all becomes even more difficult once a child ages out of the education system and is at home more.

“If there was a normal full day of programs and my son was placed in a group home, I’d still be able to work full time and contribute to society. But instead, I’m taking care of my son,” said Kavchak.

Parents are faced with finding more care or services, which can be costly, or quitting their job. Moreover, as the nation faces a housing crisis, people with autism are not exempt from the issue and are affected more now than in the past.

A housing crisis

“This is the first generation where individuals with developmental disabilities are living into their senior years and outliving parents and loved ones,” said Gary Gladstone, stakeholder relations lead with Reena, a Toronto area social service organization.

He points to improved healthcare and living as the reason, “because of better living conditions, because of better health outcomes and because the institutions have been closed.” However, there is no widespread housing alternative available, making adults in need of care especially vulnerable to the challenges of finding a place to live.

“We’ve been speaking with all levels for government. … Those with developmental disabilities are now a targeted vulnerable community in the federal national housing strategy which has helped significantly” – a positive note that Gladstone feels is making a difference but he admits, all level of government need to do more.

Waitlist conditions are 'absurd'

Not only are spaces limited, but the waitlists are also often based on need. In a statement, Ontario’s Ministry of Children, Community and Social Services said, “The type of developmental services support a person receives depends on their needs assessment and risk, availability of resources, and their requested supports.” When asked about the wait times, a ministry spokesperson told CTV News that “individuals who are assessed to be most at risk are prioritized for available resources – this is not a first-come, first-served system.”

Advocates have shared stories with CTV News about families dropping children off at hospitals, declaring them homeless, or formulating a crisis to access other funding in desperate attempts to get around the waitlist.

“My wife and I have bonded together. This is our responsibility to care for our son and we’re doing the best we can,” said Kavchak, adding “we try to manage our lives in such a way that we avoid crisis, but the government is basically telling us that you’ll only get your son placed in a group home if you can have a crisis – it’s just an absolutely absurd situation.”

Kavchak has advocated for more services since his son was first diagnosed, self-publishing books and holding demonstrations on Parliament Hill. He blames all levels of government for failing Canadians with autism, including the healthcare system, social services and the justice system.

“In Canada, some of the most vulnerable people are totally left behind, totally ignored. This situation, in a G7 country as wealthy as Canada, that we would be told our disabled son would be our responsibility until we die basically, this is absurd. I can’t believe this is how provincial and federal governments are willing to deal with this situation,” said Kavchak.