Monday, February 5, 2018

New hub to address developmental disabilities, mental illness

By Louise Kinross

The Azrieli Foundation has given $10.4-million to the Centre for Addiction and Mental Health to create the first centre in Canada to support adults with disabilities like autism and Down syndrome who also have mental illness.

“A lot of us have anxiety and depression,” said autistic advocate Daniel Share-Strom at an announcement at CAMH today. “Why wouldn’t we?”

Daniel described his world growing up as one where the speed and volume of learning, combined with social demands, was too much to cope with for someone who had trouble reading social cues and managing sensory information. He was always being corrected, he said, which led to a “pervasive sense of being judged all the time’ and of feeling ‘broken’ and ‘not capable.’

Daniel noted there are few adult psychiatrists who are skilled in working with people with autism, and they’re almost impossible to access due to waitlists. As a result, his mother had to purchase private services for him, at an hourly rate six times her salary. “There’s no off switch to these challenges when you turn 18,” he said. “I have difficulty finding help on my own when I feel hopeless. We need strong advocates when we’re immobilized with doubt.”

According to research from CAMH and the Institute for Clinical Evaluative Sciences, 
45 per cent of about 65,000 adults with neurodevelopmental disabilities in Ontario have a mental illness, and six per cent have addiction. Due to a dearth of services, a study published in the Canadian Journal of Psychiatry found that almost half of hospital admissions for Canadian adults and teens with developmental disabilities were related to mental illness.

“There are no services that provide the continuous, comprehensive care necessary for this population,” said Naomi Azrieli, CEO of the Azrieli Foundation this morning. “This is the most vulnerable population in our healthcare system.”

The new Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health will provide better care, research and training in the field. It is being directed by Dr. Yona Lunsky, a psychologist who leads the Health Care Access Research and Developmental Disabilities Program at CAMH. Yona has a sister with a developmental disability.

Yona has led a number of studies evaluating interventions for reducing depression and stress in parents of adults with developmental disabilities. Naomi said that families are the “first level of care” for adults with disabilities, and that they are not being supported. “The normality of constant worry and anxiety becomes a backdrop to everything,” she said at the CAMH announcement. Naomi has a brother with Fragile X syndrome and said the family's personal experience played a role in the decision to fund the new centre.

All of the speakers spoke to the need to better support adults with neurodevelopmental disabilities—and their families—at a much earlier stage.