Award-winning film takes a frank look at respite care in Utah

Jul 20, 2011
Photo of a mother with her two sons with disabilities.
KSAR's award-winning film tells the stories of families whose children with disabilities continue to need care into adulthood.

The families of people with severe disabilities know better than anyone what their lives are like. But sometimes that reality is obscured behind words like “respite,” “budget,” and “severe disability.”

Last year, the Center for Persons with Disabiltiies’ KSAR video production unit teamed up with the Utah Developmental Disability Council to make those words real.

The result was Keep People Home. Keep People Working. The 18-minute film went on to win a bronze Telly in the fundraising category. The award is given to top-tier, non-broadcast productions.

The short film also powerfully communicated the reality that some families face. When it was finished, the DVD was distributed to advocates, who then were asked to share it with their communities and policymakers.

The result? While it’s hard to draw a direct line between cause and effect, people with disabilities received $1 million more in funding to reduce the waiting list in Utah. The Utah Legislature granted the funds in a tough budget year.

“I think it might have been a tipping point,” said Utah DD Council Executive Director Claire Mantonya. The film’s straightforward look into the lives of families may have impacted policymakers enough that they gave people with disabilities a higher priority, especially when they understood that providing respite care is much less expensive than institutionalization. (On average, the film says, respite care costs $2000 per year, while institutionalization costs $15,000.)

Some stressed-out families may see institutionalization as the only way to get a break from the demands of caring for a family member with a disability.

It’s a difficult story to tell.

“It’s hard to say, ‘I can’t do this’ or ‘I need help with this,’” Mantonya said. But the DD Council found families who were willing to do it on camera, frankly opening up their lives.

Filmmaker Todd Newman of KSAR recognized that he had a hard job: telling the story in a straightforward way, with no softening and no stereotypes. “To show the reality of it is the most important part,” he said. “You’re pulling from people’s lives and you’re not letting your own persuasions into the production.”

Ultimately, the parents said it best.

One mother said her 20 year old son, Teddy, has profound autism.  He may wake up at 3 a.m. and start trying to get to the wires in the walls, possibly because he hears the electricity. If people try to intervene he may go after them. “With our situation, there are a lot of people who are very well-meaning, and they usually end up in the same arena,” she said. “’Why don’t you just have him go somewhere else?’ [But] It’s still your child.”

She also worries that with his medical needs, he would not survive being institutionalized.

Another mother spoke of caring for her twin daughters who are now 25 years old. She was encouraged to institutionalize them years ago, but decided against it and stands by her decision. They needed such individualized help, she questions whether they would have received the attention that they got at home, or learned the skills that they have now.

On the other hand, it’s been an intense and lonely journey. “Family walked away a long time ago,” she said. “Within the first three years, people were burned out.” Though her parents helped for a time, they eventually had to take care of their own health issues.

Senator Patricia Jones, the democrat assistant minority whip, also serves on the Health and Human Services committee. She urged the Utah DD council to help people understand what the families of people with severe disabilities experience, said Mantonya.

This production was the result. “We demonstrated that the need is bigger than volunteers,” she said.

This year's Telly is K-SAR’s 17th. The production facility was originally a support for projects at the CPD. It now extends its fee- for-service work both inside and outside Utah.

See all featured stories
Bookmark and Share