What happens to people with developmental disabilities after they age out of support programs?

Most programs for people with developmental disabilities target the young, but what happens when they age out? CTV’s Spencer Turcotte takes a look.

Many supports designed to help people living with developmental disabilities target children and young adults, but what happens when users age out of the programs?

Olivia, 22, has an infectious laugh and her family said she is a very social person. They said she doesn’t let life’s challenges keep her down.

“Olivia lives with an intellectual disability. It’s a very rare genetic disorder,” Sharon Beltman, Olivia’s parent, said.

Throughout her childhood, Olivia was an avid participant in developmental programming involving organized activities.

“She has aged out of all those,” Beltman explained. “They literally handed me a folder with pamphlets and, unfortunately, due to Olivia’s level of care that she needs, most of them were not appropriate.”

Key programs that had once helped the vivacious young woman find a sense of community and connection were suddenly gone.

“We lost the amazing girl that she was because she didn’t have those social outlets and we couldn’t allow that to happen,” Beltman said.

Olivia’s parents made sacrifices to ensure their daughter could rekindle that spark.

“My husband had to leave his job to stay home and take care of her,” Beltman said. “We personally fund for her to go to some day programs.”

However, those day programs only happen on a couple of days per week, and it costs the family the equivalent of their monthly mortgage payment.

It’s a problem many families in similar situations are facing.

Their plight has inspired nine agencies throughout Waterloo Region to come together and ask the province to do more when it comes to adults with developmental or intellectual disabilities.

“There’s a crisis happening,” Ann Bilodeau, CEO of KW Habilitation, said. “Just in our Waterloo Region alone, we have pretty close to 1,000 people waiting, and they’re waiting for home support.”

Bilodeau said more than 750 people are also waiting for spaces at day programs.

She believes there’s a clear disconnect between the reality families are living with and the funding available as service levels drop and wait lists continue to grow.

“We’d like to work with our ministry and say, ‘Look, if you give service providers the resources in which to expand, or even just let us balance our budgets,’ – we’re not asking for the moon.”

In an email to CTV News on Tuesday, the provincial government said they are investing $3.7 billion in developmental services this year, including more than $2.4 billion in dedicated money for supportive living and wrap-around supports.

“This funding supports approximately 19,000 adults through supportive living services at over 240 developmental services agencies,” the email read, in part.

“We have also increased Ontario Disability Support Program (ODSP) rates by 20 per cent since September 2022, with future increases tied to inflation. This includes an increase of 2.8 per cent effective July 2025. By tying ODSP increases to inflation, our government is helping vulnerable Ontarians keep pace with the rising costs of life’s essentials,” the statement continued.

But Olivia’s family said that funding isn’t translating to the help they need, and they worry she’ll never get off the waitlists and regain a key missing part of her life.