Disabled patients stuck in Ontario's psychiatric hospitals
By Louise Kinross
Adults with intellectual or developmental disabilities (IDD) make up more than one in five patients who have been living in an Ontario psychiatric hospital for over a year, says a study published this week in the Canadian Journal of Psychiatry.
Of the 1,466 patients stuck in mental health beds for more than 365 days on Sept. 30, 2023, 22 per cent had IDD, according to the study led by ICES and the Centre for Addiction and Mental Health.
Only five per cent of these patients were in units with staff trained to work with people with IDD. This matters because the study found patients with IDD were more likely than those without to have psychotic disorder, to have moderate to severe cognitive impairment, to be unable to care for themselves, and to lack the social supports needed to leave hospital. They were also more likely to be physically held down or "secluded"—a euphemism for being trapped in a hospital room. Almost 40 per cent had autism.
In addition to creating specialized mental health care in hospitals and the community for this population, one of the study recommendations is better housing.
As the parent of an adult son with IDD, I know firsthand that the housing situation in Ontario is grim.
My son has been on the Developmental Services Ontario waiting list for supported housing for almost 13 years. This is not a transparent waiting list that moves based on when a person is added to it.
Staff at DSO have told me that less than a handful of housing spots open up each year, and they go to adults who are homeless or living in shelters. I have been told that my son will not be offered a spot unless we die and he is homeless. That's the accepted standard of care in Ontario.
On its website, DSO says: "People are linked to supportive housing options when resources become available." The kicker is that they don't become available. The province was housing five per cent less people in the 2023-24 year than they did in 2018-19, according to the Financial Accountability Office of Ontario. Its stats are included in Ending the Wait, by Community Living Ontario.
In the 2023 year, 17,856 Ontarians with developmental disabilities were receiving housing support, which could mean living in a group home or intensive support residence, with a host family, or on their own with support worker services. But, over 28,000 people were waiting for a housing placement. When will resources become available for an additional 28,000 people? And how?
A staff member at the Lights program at Community Living Toronto told me that there are about 2,000 filled developmental housing spots in Toronto, but 5,000 people on a waitlist. So even if the 2,000 people who are being housed died, the system couldn't meet the needs of those waiting.
Isn't that as stark as it gets?
I think about all the families who put their loved one on the DSO wait list, and actually expect it to work like a wait list. The ones who haven't learned the reality yet.
In addition, if you are looking for a group home for your adult child, there is no choice in the kind of home your child goes to.
When our son was first put on the DSO housing list, families could choose a “lead agency” they wanted to work with. This meant if you liked the philosophy, for example, of L’Arche homes, your child would eventually be offered a spot there.
That choice doesn't exist today.
Of course if your child isn't eligible for housing because they aren't homeless, I guess choice is a moot point.
Back to the new study.
Because appropriate mental health, housing and other community supports in Ontario are so lacking for people with IDD, they're overrepresented in psychiatric hospitals that don't meet their needs.
As the researchers in the study note: "...While bright fluorescent lights, disruptive code announcements, pungent cleaning products and loud roommates can be unpleasant for any patient, for patients with sensory sensitivities and reliance on specific routines, these common features...can be intolerable. Sensory distress can impair communication ability and lead to distressed behaviours which may be met with medications, restraints and seclusion, which in turn lead to further decompensation and increased difficulty transitioning out of hospital."
In other words, psychiatric hospitals are toxic for people with autism and other developmental disabilities.
Global News tells the story of one man who was stuck in an Ontario psychiatric hospital for 12 years.
A team at CAMH has developed these resources on what's needed to transition disabled patients from psychiatric hospital back to the community.
Like this content? Sign up for our monthly BLOOM e-letter, follow BLOOM editor @LouiseKinross on X, or @louisekinross.bsky.social on Bluesky, or watch our A Family Like Mine video series.
