TOPEKA, Kan. — When Lilly Miller was in elementary school, teachers told her parents to immediately sign their youngest daughter, who has Down syndrome, to a waiting list so that the state would pay for a day program when she grew up. The teachers predicted a wait of six years.
The Millers have been waiting for ten years. Now 21, Lilly is out of special education programs in the public schools in their hometown of Wichita, Kansas. Her parents, who are also teachers, have hired a home caregiver. A day program, where she would learn new skills or improve existing skills while socializing, would cost between $1,500 and $2,000 a month, Marvin Miller said.
In the U.S., hundreds of thousands of children, adolescents, and young adults with physical or intellectual disabilities are waiting for government-covered services. In Kansas, legislative committees were scheduled Wednesday to consider proposals for increased funding. But even with more money, 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 promote independence and build work skills. Without them, Marvin Miller says, his youngest daughter doesn’t get enough social interaction. “We actually saw her deteriorate.”
“One day I’m not going to be here anymore, and that’s every parent’s biggest fear,” Miller said during an interview. “I want her to be in a place where if something were to happen in 15 years when I’m gone, they’ll still have a community of support and friends and all the things we take for granted when we have a job and neighbors to have.
Parents in the United States no longer receive help for toddlers with developmental delays. But many parents of children with an intellectual or physical disability also have to 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 does not require states to provide home and community-based services, and what they cover varies.
Kansas expects to spend $776 million on such disability services in the current budget. That funding would need to increase by roughly 54% to about $1.2 billion per year to eliminate waiting lists.
But Kansas has also seen its budget surpluses rise since mid-2020 and is expected to approach $4.5 billion by the end of June. Democratic Gov. Laura Kelly and the Republican-controlled Legislature are both calling for large tax cuts, though they have not agreed on the details.
Neil Romano, a member of the National Council on Disability, said it’s “simply responsible” to help families so parents can be more productive at work or take care of more family needs — even taking weekend breaks.
“You’re not just helping that family and that child,” he said. “You provide help to the community.”
Kansas has separate home and community-based services programs for residents with physical and developmental disabilities, which together serve approximately 15,000 people. By mid-February, the two waiting lists totaled about 7,500 people. That figure has grown 37% over the past five years, even with an increase in funding.
Outside of Topeka, Rick and Anna Elskamp’s eldest daughter, Sheridan, is now 23, and the family was recently notified in December that she had been taken off the waiting list for mentally disabled Kansas residents after a decade. A month later, after even more red tape, they said, they were still paying for the day services themselves.
They said navigating the state’s welfare system was time-consuming and, said Rick Elskamp, ”All their acronyms and abbreviations are a whole new language.”
The budget committee in the Republican-controlled Kansas Senate was expected Wednesday to consider a Democratic governor’s proposal for an additional $23 million to reduce the state’s waiting lists by a total of 500 people.
When Kelly introduced her proposal earlier this month — weeks after presenting a proposed $25.6 billion budget without it — Republicans in the GOP-controlled House of Representatives had already been working on a plan that would double the size used to be. That plan was on the agenda of the House of Representatives budget committee on Wednesday.
But disability rights advocates want lawmakers to become even more aggressive, especially in addressing the more persistent and larger waiting list for people with intellectual disabilities. They want to spend roughly $85 million more in the next budget, reduce both lists by a total of 1,600 people and abolish both lists within five years.
Instead of reducing the waiting list for people with intellectual disabilities by 250 or 500, their plan would reduce it by 1,100 people.
“Typically, 300 to 400 people might be added to the waitlist in a year,” said Rocky Nichols, executive director of the Disability Rights Center of Kansas, a former lawmaker. “So 500 slots may not reduce the waiting list much.”
Oklahoma struggled for years to provide services to residents with intellectual disabilities and had 5,100 people on a waiting list, with some families waiting up to 13 years. With state revenues reaching record highs in 2022, lawmakers raised provider rates by 25% — and poured extra money into insuring more people. It hopes to be able to provide services to everyone who was on that list starting this spring.
Kansas lawmakers have approved another $283 million for home and community-based services over the past five years — but 90% of that went to higher rates paid to providers, according to legislative researchers.
Officials said the state first needed to build its network of providers and ensure they could attract enough workers.
“It’s very difficult to solve the waitlist problem without also addressing the staffing problem,” Alice Burns, associate director of the KFF program, said of the medically uninsured and state Medicaid programs.
But Nichols and other advocates said Kansas has seen its waitlists grow because it hasn’t allocated money specifically to help more people at the same time. Burns agreed that states should do the same.
Kansas’ funding problems aren’t likely to last at least another month. Parents like Miller, Padding and the Elskamps combine their advocacy with their jobs and caring for their children.
Sheridan Elskamp’s parents said they don’t leave her home alone because she is cognitively 6 or 7 years old. When she was in high school, they arranged their work schedules so that one of them was home when she wasn’t in school, and Anna Elskamp was demoted from her job at a credit union so that her schedule was flexible.
Marvin Miller considers his family happy, even though he and his wife have not been able to save for retirement and he drives a 1999 truck. In addition to teaching, he is an ordained minister of the Assemblies of God, filling in at churches nationwide or for churches with permanent pastors.
“As a society, I think we have an obligation to take care of…” he said, searching for the right words, “our most vulnerable members, and help them become successful.”
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Associated Press writer Sean Murphy in Oklahoma City contributed.