Parents of disabled kids face formidable obstacles accessing community programs

U of A researchers aim to raise awareness of 'invisible labour' and hidden biases to help community-based physical activity programs become more inclusive of teens with disabilities.

Bringing to light the invisible labour done by parents to get their disabled children access to community programming is the first step in overcoming barriers to inclusion hidden from people in the best position to help, according to a study from the University of Alberta.

"From locating available and accessible programming to often having to find and pay for someone trained in adapted physical activity to accompany the child, parents are faced with challenges to just get their child through the door," said the U of A's Donna Goodwin.

"Even as an adapted physical activity educator, I was shocked to hear the experiences of these parents," she said.

It's an enormous task, said Goodwin, who, along with her colleague Amanda Ebert, held in-depth focus group interviews with parents of children aged 13 to 19 to find ways to help lighten the load.

The researchers selected the teenage group because that's when children begin to gain independence, and participation in programming becomes less labour-intensive for parents of typical kids.

"Not only did the discussions unveil that inclusion takes an immense amount of effort, they also illustrated the discrimination in favour of able-bodied people encountered when parents attempt to engage their children in community-based programs," said Goodwin.

Parents stated they spent considerable time building relationships and educating staff members and managers about biases that label their children as disabled. In some cases, where parents were able to pass their children as "able enough" to participate, staff members would ensure the child was safe but wouldn't actually engage them in a meaningful way.

Parents also stated that if they did not find the programming to have any therapeutic value, they would make the guilt-filled decision to stay home as opposed to taking on the multilayered labour to get their children into a community-based program.

Starting conversations

As a physical activity practitioner and former graduate student, Ebert made efforts to increase education about parental hidden labour and start conversations about changing policy.

"The response to the research outcomes has been very encouraging," she said. "We're finding that practitioners want to make their programs and facilities more inclusive, and simply being aware of the parental hidden labour will help them in relationship-building with these families."

Although there is a desire from practitioners for change, Ebert said much of the feedback and discussion about making programs more inclusive is often met with policy-related hurdles.

"I hope this research helps take the issue back to a more pragmatic level," she said. "Instead of saying, 'OK, we have a ramp at our facility and that makes us inclusive,' practitioners can talk about what other barriers exist. Maybe it's modifying the intake form for programs to include sections for disabled children's information that ask the right questions to make it easier for everyone to have these kids attend community programming."

For Goodwin, changes are also needed at the policy level to lessen parental hidden labour and remove access barriers from community programming.

"Ultimately, I'd like to see a commitment from organizations to say they will do whatever is required to make their programs more inclusive for all families," she said. "Part of that is building relationships with these families and asking them, 'What will it take to make this work?'

"If that can happen, we can start to see positive changes that make these facilities and programs become an inclusive community for all."

The study, "Physical Activity for Disabled Youth: Hidden Parental Labor," was published in Adapted Physical Activity Quarterly.