Ontario family finds home for autistic son after 16 months in hospital as countless others wait for care
Posted February 20, 2024 12:25 pm.
Last Updated February 20, 2024 7:17 pm.
A family pushed to despair after their autistic son was placed in a psychiatric ward because there was nowhere else for him to go have finally found their answer.
Michelle and Sean Crooks have 24-year-old twin sons who both have been diagnosed with autism. During COVID-19, both of their sons struggled without a regular routine, but Aidan started exhibiting violent tendencies.
“A year ago, we had been dealing with Aidan through the outpatient psychiatric unit and trying some medications to see if that would help with sleeping and lessening his aggressive behaviours. And it didn’t really work, and we ended up with more violence,” explained Michelle to CityNews last March.
The Crooks were on a crisis list for proper housing and care for Aidan but nothing was available. After months of daily violent attacks that were escalating, the parents were forced to call 911. Aidan was placed in a psychiatric ward at Owen Sound Hospital, but they still had to pay for one-on-one support, which cost tens of thousands of dollars.
Their life savings were gone and they were told it could be years before a placement was found for him.
Now almost a year later, it’s impossible to overstate the difference in the family.
“We’re very lucky, but it took a lot of fighting to get where we are,” said Michelle.
After 16 months in the hospital, Aidan has been moved to a small bungalow at a facility in East Grey County, half an hour from his parents’ home in Meaford, so they are able to visit him regularly and he is thriving.
“He’s doing much better there. He’s able to self-regulate and control himself,” said Michelle. “We can leave and not feel nervous, or even just bad … it’s a lot of guilt and regret when we are leaving him at the hospital.”
He still has some aggressive outbursts, but Aidan has a 24-hour staff trained to deal with them. It is the best possible outcome for his parents, who are caring for Aidan’s twin brother Devlin, who is also autistic.
Michelle said they don’t how long they would’ve waited if they hadn’t told CityNews their story.
“I feel like it put some pressure on …. I don’t know how [it works] in the ministry of how things are prioritized because we were already at the top of the crisis list. It just seems that that awareness helped to bring attention … people started listening to us.”
“We just want everyone to know so many people aren’t getting the help they need,” added Michelle. “We’re just a drop in the bucket of the amount of Canadians that are in the same [boat] as us that aren’t receiving what they need.”
And that is the message Aidan’s parents want people to hear, they know there are many others who are still in crisis.
After their story on CityNews aired, the Ombudsman announced an investigation into cases of people with developmental disabilities who are inappropriately housed in hospitals due to a lack of services, noting they can be there “for long periods often kept in restraints and their condition deteriorates.”
That is Andrew Kavchak’s biggest fear; he’s had open heart surgery and a mild stroke. His son, Steven who is 22 years old, has been on a waitlist for a group home for years.
“The very first day, on his 18th birthday when he was eligible to be placed on a waiting list for placement in a group home, we called into the government offices and immediately had his name placed.”
Kavchak said they were told the waiting period could be up to 10 years. “More recently, we’ve been told that that, in fact, it’s not a question of first-come-first-serve or a time period average,” explained Kavchak. “It’s a problem that there are so few places that become available that when they do become available they’re immediately given to people who are in priority cases because of crises in their families.”
He said it’s frightening to think about what could happen to Steven when they can’t take care of him anymore.
“If there comes a point where my wife and I are not able, either because of an illness … or one of us becomes incapacitated or dies, or there’s some sort of a crisis, and we can’t deal with him anymore, and he’s got to be placed, the government has told us that if there is no place available at that time, one of the options is placement on a temporary basis in psychiatric ward,” said Kavchak.
“The most vulnerable in our society should be at least given a minimum standard of living. All we’re asking for is a group home and some daily activities.”
Michelle and Sean have that same fear for their other son, Devin. “The likelihood is that Devin is going to be with us until we are too sick or old or we pass away. There’s no plan. There’s no plan for these kids … we’re reaching this utter crisis of ‘where are these people going to go?’ Because we can’t live forever. And so that part is really scary.”
According to the government, there are currently a total of 93 patients across the health care system with developmental requirements designated as ALC (Alternate Level of Care, where people don’t need to be in a hospital for medical reasons), who are waiting in acute and post-acute settings in a hospital for discharge to a setting that would provide appropriate community supports.
The ministry said they have invested $3.4 billion over 2023 and 2024 in the development services sectors and there are approximately 19,000 adults receiving supportive living services.
“We recognize that each person has unique needs which is why each person’s situation is reviewed on an individual basis. Those individuals who are assessed to be most at risk are prioritized for the available resources – this is not a first-come, first-served system,” read their statement.
The government did not say how many adults with developmental disabilities are on waiting lists for proper care and housing.
Currently, there is no timeline yet for when the Ombudsman report will be released.