Youth with disabilities often lack support as they leave school, report says

Some youth with disabilities in Manitoba lack the support they need to transition out of school and live independently, as their caregivers struggle to navigate a complex web of programs and policies with little help, says a report released Wednesday morning.

The Transition to Adulthood for Young Adults with Disabilities in Manitoba: A Winding Up-Hill Road used an anonymous online survey and interviews to examine how effective the supports and services are for youth with disabilities as they age out of school.

Along with a series of recommendations, the 247-page report published by the Canadian Centre for Policy Alternatives contains dozens of quotes from people with disabilities, caregivers, educators and service providers about their experiences.

Some of those interviewed talked about being cut off from some youth services after leaving school, but said they couldn't live independently without some assistance.

One person with a disability said they didn't qualify for support from agencies such as Community Living DisAbility Services because their IQ was too high, but they couldn't get a job or live alone without some help.

"I want to do both those things. My parents aren't going to be able to take care of me forever."

Parent's concerns

One service provider interviewed said many youthin Child and Family Services who age out of care and "are not able to take care of themselves but are told their IQ is too high to qualify for [Community Living DisAbility Services]."

"These youth then end up in the justice system, sheltersand addiction services because they are not able to properly take care of themselves."

Only 3.7 per cent of people with a disability who were surveyed for the report said they lived alone, while close to 70 per cent said they lived with their parents.

Of the caregivers surveyed, 88.5 per cent said their adult child lived at home with them.

Stacey Misko, whose 15-year-old son, Kyran, has autism spectrum disorder, said she worries that because he has a high IQ, he won't qualify for certain services once he becomes an adult.

"He can have a very intellectual conversation, but the day-to-day life skills are really challenging for him, like following your routine, you know, getting dressed, cooking food, stuff like that," she said.

"They're vulnerable people. We call them that for a reason."

The rigid requirements to receive certain supports are one of the key concerns people shared, said Nadine Bartlett, an associate professor in the faculty of education at the University of Manitoba who was the principal investigator for the study.

For example, the requirement for students to stay in high school until they're 21 in order to continue getting services and support from certain agencies was seen as problematic by some participants, and led to students dropping out and not getting help from disability services for adults, either, she said.

"They're neither in school and getting support there and they're not receiving support in the adult system either," she said.

"And those young people were characterized as really falling through the cracks."

Under-resourced system

Overall, the report found that Manitoba has an "under-resourced system that is undermining the personal dignity, freedom of choiceand equitable access to support for [people with disabilities], and changes are urgently required."

The report was commissioned by the Family Advocacy Network of Manitoba, a grassroots organization that supports people with intellectual and developmental disabilities and their families, after hearing from families about the challenges they face.

Debra Roach, the organization's president, said families have spoken out about the difficulties navigating the province's myriad programs and services and helping their children live independently.

"It's very frustrating, and the parents know that they are capable of independence, but they just need that extra help to kind of get things off the ground for them."

The report outlines several recommendations in 12 different areas, including discontinuing the use of the supports intensity scale a standardized assessment tool used for people with intellectual and developmental disabilities to determine a person's eligibility for services.

It also recommends adopting a personalized approach to resource allocation, creating more opportunities for post-secondary education and employment, and developing a system to follow up with youth as they transition out of high school.