Krista MacGillivray is an eyewitness to the holes that exist in available support for Prince Edward Islanders living with autism and intellectual disabilities.
Her son, Julian, has what’s known as profound autism. He’s non-verbal and requires 24-hour care, and will for the rest of his life.
Julian is 20 years old and is no longer in the school system — meaning he doesn’t have access to a public space where he can go to feel safe, MacGillivray said.
“In adulthood, you don’t have that,” she said.
“I understand the challenges of staffing within the adult programs, but if something happens to myself and I can’t take care of him, well, what happens?”
Children and adults with profound autism are often unable to manage daily needs like personal care or getting dressed. The disorder is often associated with intellectual disability, limited language skills or both.
MacGillivray said issues with adult programming need to be addressed — and some families are already running into problems.
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Advocates recently told MLAs at a legislative standing committee meeting that provincial funding that helps pay for the cost of personal support workers, day programs and respite for caregivers is not keeping pace with inflation.
“Families might get a few hundred dollars a month for respite money that they should use for … respite evenings, weekends,” said Helena Reeves, director of residential services for Stars for Life, a P.E.I.-based autism support organization.
“But they have to put that into their day programming fund because also they need to work.”
Natalie Walsh-Annand, executive director of the Autism Society of P.E.I., told CBC News there have been “incremental” changes, but needs at the individual level are not often being met.
For families transitioning from the school system, she said, it can be “very overwhelming.”
“I think a lot of families kind of compare it to … climbing a mountain and then falling off the other side of that cliff as they exit the school system,” Walsh-Annand said.
“You’ve gotten to know the teachers, the EAs, the support staff, and you’re walking into kind of an unknown. And so … how to understand and co-ordinate that is a lot.”
The provincial government recently finished an independent review of its support funding and a spokesperson said in an emailed statement that some changes have already been made. The province said other changes are coming in the next few years that should bring more money and more flexible funding for families.
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After months of advocating, MacGillivray said she’s been able to get funding at a level needed for her son’s care.
But it’s taken a financial toll.
“You’re adding things to your home like security cameras within the house, you’re adding monitors, you’re adding barriers in your car,” she said.
“You’re adding all these extra things that might not be covered from accessibility support that the average family wouldn’t have an idea of.”
