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Family fighting autistic teen's discharge from hospital
Taylor McNee is an 18-year-old with autism who been living in a hospital room for five months because there is nowhere else for him to go. And his case is once again highlighting a growing problem: who will take care of autistic children once they become adults?
Taylor has a genetic condition called Fragile X syndrome, which has led to both autism and developmental delays. His family says he is a sweet, loving boy who is usually very easygoing. But Taylor is prone to rages and can suddenly lose control.
Five months ago, one of the rage incidents led to injuries that required him to be taken to Toronto Western Hospital. He's long since recovered but has been there ever since.
The hospital says Taylor needs to leave, since he no longer needs medical care. But his mother says it's not safe for him to come home and that he risks injuring his younger brother, Ethan, who also has a genetic developmental disorder.
"He knocked him with a 6-pack of pop one time -- just knocked him in the head with it. Not that it was terribly hard, but we are just fearful that he is going to end up doing something that will cause some sort permanent damage," says Taylor's mother Beth Edwards.
"The fact that he targets Ethan scares me because Taylor is much bigger," she adds. "Taylor is the size of a man. He's 5'7", 160 pounds and Ethan is 60 lbs, so… it can be quite harmful for Ethan if he gets pushed or shoved or punched or anything like that."
Taylor could go to a group home for other adults and teens with autism, but there are few that would be appropriate for Taylor. Some are suited to those who are more independent and who have fewer needs. The ones that would be a good match for Taylor have wait lists that are months long with no opening in sight.
Edwards says she and Taylor's social workers have been looking for months.
"There was not anything. The waiting lists are so long and the only option for me was the hospital," Edwards says.
"Right now he is in the hospital and he is safe and he is well cared for by the staff there, who are wonderful. But that is not appropriate for my son. I am in full agreement with the hospital on that. But where are the appropriate places? Why aren't there enough?" she wonders.
Dr. Robert S. Bell, CEO of University Health Network, which includes Toronto Western Hospital, says the moment that patients enter the hospital, the care team is working on plans for how to discharge them.
"If our patients who need access for acute illness are gonna get the care they need, we have to be very careful to ensure there is great discharge planning for people who are currently in our hospital," Bell told CTV News.
Autism advocates say this case is not unique and highlights the ongoing question of where do children with autism go when they become adults?
"If we don't start planning for this adult population that needs to support, it will put more stress on families," says Lawrie Mawlaw of Autism Canada.
The fact that wait times for group homes in Ontario can be eight months to a year is unacceptable, says Ontario MPP Michael Prue, who is trying to help Taylor's family.
He notes that while Taylor waits in hospital, it's costing taxpayers $800 a day and taking up a bed that someone with more pressing health needs could be using.
"He doesn't have an acute health problem, he has autism. He needs a stable environment. That's what he is not getting," says Prue.
"The solution is to make sure there are sufficient places in the system to accommodate those in need. The waiting list ought not to be a year or long. When someone is in need, they are in need."
The hospital says it has run out of options and has now called in the province's Consent and Capacity Board to decide whether to remove Beth Edwards as Taylor's substitute decision maker. There will be preliminary hearing on the matter on Friday, when all sides hope that a resolution can be found.
UPDATE 4/27: The hearing scheduled with the hospital and the social worker in the case has been delayed for two weeks as efforts are made to find with a more permanent solution for Taylor's placement. He remains in hospital.
With a report from CTV's Avis Favaro and producer Elizabeth St. Philip