States offer services for disabled kids, then make their families wait 10 years for them

TOPEKA, Kan. – When Lilly Miller was in elementary school, teachers told her parents they needed to immediately sign up their youngest daughter, who has Down syndrome, for a wait list so the state would pay for a day program when she grew up. The teachers predicted a six-year wait.

The Millers have been waiting 10 years. Lilly is now 21 and has aged out of special education programs in the public schools in their hometown of Wichita, Kansas. Her parents, also teachers, have hired a home caregiver. A day program, where she would learn new job skills or flex existing ones while socializing, would cost between $1,500 and $2,000 a month, Marvin Miller said.

Across the U.S., hundreds of thousands of children, adolescents and young adults with physical or intellectual disabilities are waiting for state-covered services. In Kansas, a legislative committee approved higher funding

Wednesday, and another is expected to consider it Thursday. But even with more funds, it could take years to eliminate the state’s waiting lists.

The services, which include day programs, employment assistance, and home care, are designed to foster independence and build work skills. Without them, Marvin Miller said, his youngest daughter isn’t getting enough social interaction. “We’ve actually seen her regress.”

“Someday, I won’t be around anymore, and that’s a parent’s greatest fear,” Miller said during an interview. “I want her to be at the place where, if something should happen in 15 years when I’m gone, she will still have a community of supports and friends and all the things that we take for granted when we work in jobs and and have neighbors.”

Parents across the U.S. have been stalled getting services for toddlers who are delayed developmentally. But many parents of children with intellectual or physical disabilities also must think years into the future.

At least 692,000 people with physical or intellectual disabilities are waiting for services in at least 40 states, according to a November 2023 survey by KFF, a health policy research group. Federal law doesn’t require states to provide home and community based services, and what they cover varies.

Kansas expects to spend $776 million under its current budget on such services for the disabled. That funding would have to jump by roughly 54% to about $1.2 billion annually to eliminate waiting lists.

But Kansas also has seen its budget surpluses balloon since mid-2020 and they’re now projected to approach $4.5 billion by the end of June. Democratic Gov. Laura Kelly and the Republican-controlled Legislature both advocate big tax cuts, although they haven’t been able to agree on the details.

Neil Romano, a National Council on Disability member, said it’s “simply responsible” to help families so parents can be more productive in their jobs or attend to more family needs – even take weekend breaks.

“You’re not just providing help for that family and that child,” he said. “You’re providing help for the community.”

Kansas has separate in-home and community services programs for physically and developmentally disabled residents, together serving about 15,000 people. As of mid-february, the two waiting lists totaled about 7,500 people. That figure has grown 37% over the past five years, even with increases in funding.

Outside Topeka, Rick and Anna Elskamp’s oldest daughter Sheridan is now 23, and the family recently received word in December that she was off the waiting list for intellectually disabled Kansas residents – after 10 years. A month later, after more administrative hoops, they said, they were still paying for day services themselves.

They said navigating the state’s social services system has been time-consuming and, Rick Elskamp said, “All their acronyms and abbreviations are a whole new language.”