Anne Snowdon released her report on Strengthening Communities for Canadian Children with Disabilities at a conference Thursday after a one-year study funded by Human Resources and Skills Development Canada.
Numerous programs are available, but they can be challenging to access and navigate, said Snowdon, who has a PhD in nursing and is a professor at the University of Windsor's Odette School of Business.
"Communities tend to have more opportunities for children in the zero-to-six, maybe zero- to eight-year-old age range, but when we're working with children who are 18 or 21 or 24, there are many, many fewer opportunities," she said in an interview.
"Our data suggests that the social involvement in communities declines quite sharply as the children get older."
The study involved a survey of 166 families in Fredericton, Regina and Toronto, as well as focus groups made up of eight to 12 participants in each community.
Sixty-three per cent of respondents said they were not satisfied or only somewhat satisfied with the level of community support available to them.
Children and youth represented in the survey had a variety of diagnoses: autism spectrum disorder, global developmental delay, intellectual disability, multiple cognitive and physical disabilities or Down syndrome.
When families were asked to describe their child's friendships with peers, 53 per cent said their child has "no close friends" or only "one close friend."
It's a subject that "really reaches at the heartstrings when you talk to these children and their families," said Snowdon.
"More than half of them had one or had no friends. So that is a very compelling red flag for me, that we need to work harder in our communities to help them maintain and to really build those social networks beyond no friends, and-or just one friend, because we all know nobody really thrives with just one friend."
One parent told Snowdon that it was harder for her daughter to make and maintain friends after about Grade 5 or 6.
"It really, really becomes a challenge. And that's an area we really hope to work very hard on in working with our community and community partners — on finding some innovative ways to strengthen that piece," Snowdon said.
Deborah Barrett is the mother of a 23-year-old son with autism, and agreed that it can be challenging to find community support once kids reach a certain age.
"Once they turn 18 or leave school at 20, if they stay that long, it's like they're dead," said Barrett, director of community awareness and development at the Autism Society of Edmonton Area.
"There's nothing for them in the community. My son, particularly, even with his limited verbal skills, he was very clear he wanted to continue to go on to school."
Snowdon said the study showed that social interaction and connectivity is important for development and quality of life, and many of the children want to be engaged in meaningful social networks.
"One of the very important and useful tools that children themselves are telling us about is how critical it is to be on social networking sites, because they're able to connect with friends, acquaintances, peers, other family members at a distance," she said.
Social networking tools could also connect parents, Snowdon said.
And she recommended that community agencies work with families to co-ordinate their information so that a parent can visit one website for smooth and easy access to services and support from the health-care community.
Barrett wholeheartedly welcomed the idea. She said that in Edmonton now, Persons with Developmental Disabilities has a resource list, but it's difficult to tell what's offered by any particular group, and it's frustrating because some places don't return calls.
"What we would really need would be a list of resources and an objective description of what they actually provide and their philosophy, because different groups have different philosophies of how they treat people with disabilities," Barrett said.
"For some groups, it's OK to herd a group of people down the mall at 10 o'clock on a Tuesday. That's not something I want for my child."
It would also be nice to have a co-ordinating person who could ask what kind of program a family is seeking, and respond with a solution, she said.
"Finding the fit for your child and your child's needs — that's a really difficult thing. Most families are faced at age 18 or once they leave high school — you're just looking out into the world and not seeing anything. There are no signposts right now to guide the way."
The report was released at the Sandbox Project’s second annual conference in Toronto. The project was created to improve the health of Canada's children and youth, and make measurable progress against international health indicators.