CBC is set to air a special White Coat, Black Art town hall recorded at CAMH that delves into the struggles faced by families when their children with high needs age out of the pediatric health care system.Hosted by Dr. Brian Goldman, Crisis of Care drew a sold-out crowd on June 12 to share stories, network, discuss possible solutions and learn from a panel that included Dr. Yona Lunsky, Director of the Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health; Rose Canto, the parent of an 18-year-old boy with cerebral palsy; Brendon Pooran, a lawyer specializing in disability law; and Wesley Magee-Saxton, a first-year theatre student at York University and advocate for people with disabilities.“One of the challenges is that when you’re just struggling with instability as a family on your own, who do you talk to?” Dr. Lunsky asked the audience. “So getting these conversations out there and having these discussions really makes a difference. We need to start by connecting.”
Dr. Yona Lunsky speaks with an audience member after the town hall.
Family members – both on the panel and in the audience – described a number of challenges in the health care system and beyond with recurring themes. Funding for homecare is inadequate, only to be reduced further when a young person reaches 18. There’s a huge drop in the number of programs available for adults no longer able to attend school – and the few programs there are may not be accessible to everyone or affordable. Families struggle with little support and face an uncertain future. Wait lists can last literally decades.“The system is greatly under resourced and set up to deal with crises and you just hope your family isn’t the next one to have to deal with a crisis,” says Don Anderson, whose 16-year-old son recently moved into residential care. “There are a lot of families that are just hanging on and doing the best they can – until they can’t anymore.”
Don Anderson contributes to the Crisis of Care discussion.
But there was hope at the town hall, too, with a sharing of ideas and possible solutions – funding programs that worked for families, agencies that were on the right track and battles that were won. Brendan described ways in which families can develop long-term plans for their loved ones. Just the fact that such a town hall was taking place was a step in the right direction, he said.
“I would encourage families to get out there and network with other families to get exposed to these ideas because it will help them generate solutions that may work for them,” he said.
Dr. Lunsky agreed.
“Clearly this a health care and social services and education issue, but it’s also our issue. It’s an issue in our neighbourhoods and in our families,” she said. “We have to give people the support they need to learn from what other families have figured out.”
Crisis of Care will air twice this weekend on CBC Radio One; use the hashtags #crisisofcareCBC and #MentalHealthIsHealth:
Saturday, June 16 at 1 p.m.
Sunday, June 17 at 6:30 p.m.
Wednesday, June 20 at 9 p.m.