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Pandemic Intensifies Child Care Crunch In Kansas City For Parents Of Kids With Special Needs

Courtesy of Jenny Truman
Jenny Truman's 12-year-old daughter, Kate, loves the after-school program she attends through the Lee's Summit School District. But providing after-school care for middle schoolers with special needs is expensive, and the district has said this will be the last year for the program.

From after-school programs to adult education, parents in Kansas and Missouri are doing one of two things: fight to keep programs open or create resources to solve their own problems.

For parents of kids with disabilities, finding appropriate child care in the Kansas City metro was a struggle even before the pandemic.

“When you have a child with special needs, it’s not quite as simple as hopping onto care.com and just picking someone,” said Rebecca Kline Toy, the clinical director of the residential psychiatric treatment program at KidsTLC in Olathe. “You’re really looking for someone who gets your kid, that you feel safe taking care of your kid.”

Across the U.S., about 17% of children between the ages of 3 and 17 have been diagnosed with a developmental disability, according to the Centers for Disease Control and Prevention. KidsTLC provides support for children with autism, disabilities and trauma.

Most families use some form of kinship care — that is, relatives and friends watching the kids for a few hours. But parents of children with special needs can’t always rely on their networks.

“Sometimes the challenge is keeping those people on board because certain special needs can be quite demanding. Not everyone’s prepared for that,” Kline Toy said.

Children with special needs often require care beyond the age cutoff for most child care facilities. Kline Toy noted it’s possible to find child care for older kids, but the system isn’t easy to navigate.

And right now, it’s even harder because of the pandemic.

Funding crunch

Earlier this month, Jenny Truman got the kind of letter the parents of kids with special needs dread: The Lee’s Summit School District was canceling her daughter’s after-school program.

Truman’s 12-year-old daughter, Kate, has Williams syndrome, a rare genetic disorder that causes mild developmental delays. While most of Kate’s classmates can be home alone for a few hours, she still needs supervision.

“Overall, she’s very functioning, but she’s extremely friendly, overly friendly,” Truman said. “We can’t let her get off the school bus by herself and get into the home by herself because she goes up to strangers and talks to strangers.”

But providing after-school care for middle schoolers is more expensive. Fewer families need care for students who are Kate’s age, so the district bused students from the three middle schools to an elementary school for the program.

In the letter, the district said the program was operating at a loss pre-pandemic, and the coronavirus had increased the cost of providing care. If parents had to foot the full bill, the cost would jump from about $300 per month to more than $1,000. The district suggested that families use care.com to make other arrangements.

Truman and other parents pushed back, arguing that two weeks’ notice wasn’t enough. The district listened, reinstating Kate’s after-school program for the 2020-21 school year. But officials warned parents they would need to come up with an alternative for future care.

“If I had an elementary kid, of course I could go to a day care, but we don’t have other options for this age group. That’s what’s so frustrating. I don’t want to still be spending $300 a month for my 12-year-old to have after-school care, but it’s a safety issue,” Truman said.

Continuous care

For some parents, their children with disabilities never stop needing care. Kim Riley lives in Raytown, Missouri, and has a young adult son with autism. Kendall’s graduation from high school in 2019 spurred Riley to create The Transition Academy, a resource to help families with college and career planning.

Many parents end up leaving the workforce to care for their adult children with intellectual disabilities because the kids can’t live independently.

Riley said meaningful employment would help the situation at home, for both the kids and the parents, so she’s working with community partners to develop those opportunities for her son and his peers.

“So often we look at disabilities through such a narrow lens. But we can help families discover their children’s assets and strengths,” she said.

Ultimately, Riley wants to create a resource locator for other families. For example, if the individual with special needs requires help using the bathroom, families could filter by programs offering diapering assistance.

This year, though, the pandemic has been hard on families like hers. Without special education services that schools typically provide, students with disabilities feel adrift. That’s increased pressure on parents that already felt lonely and frustrated.

“We were always in a pandemic,” Riley said. “We were always socially distanced.”

Elle Moxley covered education for KCUR.
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