When Lily Miller was in elementary school, her teachers told her parents to immediately put their youngest daughter, who has Down syndrome, on a waiting list so the state would pay for her day program when she grew up. The teachers predicted a six-year wait.
The Millers have been waiting for 10 years. Now 21, Lily has reached the age limit for special-education programs in their hometown of Wichita, Kansas. Her parents, who are teachers, have hired an in-home caregiver. Day programs, where Lily can learn new job skills and use her existing skills while socializing, cost $1,500 to $2,000 a month, according to Marvin Miller.
Across the U.S., hundreds of thousands of children, adolescents and young adults with physical and intellectual disabilities are waiting for state-covered services. In Kansas, a legislative committee is scheduled to consider a budget increase proposal on Wednesday. But even with the increased funding, it could take years to eliminate the state’s waiting lists.
The services, which include day programs, employment assistance and in-home care, are aimed at promoting independence and building job skills. Marvin Miller said without them, his youngest daughter isn’t getting enough social interaction. “We’re actually seeing her regress.”
“One day I’m not going to be here anymore, and that’s a parent’s biggest fear,” Miller said in an interview. “If I’m gone in 15 years and something happens, I want my daughter to be in a place where she has a supportive community and friends and the things we take for granted because we work and have neighbors.”
Parents across the country are struggling to access services for their developmentally delayed toddlers, but many parents of children with intellectual or physical disabilities 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 health policy research group KFF. Federal law does not require states to provide home- and community-based services, and services vary by state.
Kansas expects to spend $776 million on such services for people with disabilities in its current budget, and would need to increase that budget by about 54% to about $1.2 billion per year to eliminate the waiting list.
But Kansas has also seen its budget surplus grow since mid-2020 and is expected to approach $4.5 billion by the end of June. Democratic Governor Laura Kelly and the Republican-controlled Legislature have both pushed for big tax cuts but have been unable to agree on details.
Neil Romano of the National Council on Disability said it’s “simply the responsible thing to do” to help families so parents can be more productive at work, better serve their families’ needs or take weekends off.
“You’re not just providing assistance to that family and that child,” he said, “you’re providing assistance to the community.”
Kansas has separate home and community service programs for people with physical and developmental disabilities that serve about 15,000 people combined. As of mid-February, there were about 7,500 people on the two waiting lists, a figure that has increased 37 percent over the past five years despite increased funding.
Just outside Topeka, Rick and Anna Elskamp’s eldest daughter, Sheridan, is now 23, and the family received news in December that she was no longer on the waiting list for intellectually disabled Kansas residents for the first time in 10 years. A month later, and after more paperwork, the family is still paying for her own day care.
Understanding the state’s social welfare system has been a time-consuming task, they said, with Rick Elskamp saying, “It’s a whole new language with all the acronyms and abbreviations.”
The Kansas Senate’s Republican-controlled Budget Committee was scheduled to consider the Democratic governor’s proposal Wednesday for an additional $23 million to reduce the state’s waiting list by a total of 500 people.
When Kelly outlined his proposal earlier this month — he offered a $25.6 billion budget proposal without one a few weeks ago, but Republicans in the Republican-controlled House were already working on a plan twice as large — the plan was on the House Budget Committee’s agenda for Wednesday.
But disability rights advocates want lawmakers to be more aggressive and address the long, drawn-out waiting lists, especially for people with intellectual disabilities. They want to spend about $85 million more in the next budget to reduce both lists by a total of 1,600 people, and eliminate both lists within five years.
Their plan would reduce the waiting list for people with intellectual disabilities by 1,100 people, rather than 250 or 500.
“Typically, 300 to 400 people get added to the waiting list per year,” said Rocky Nichols, a former state legislator and executive director of the Kansas Disability Rights Center, “so a 500-spot quota may not do much to reduce the waiting list.”
Oklahoma has struggled for years to provide services to its residents with intellectual disabilities, with 5,100 people on a waiting list, some families waiting as long as 13 years. With state revenues hitting a record high for 2022, lawmakers raised provider fees by 25% and pumped in additional funds to cover more people. The state hopes to provide services to everyone who was on that list as of this spring.
The Kansas Legislature approved an additional $283 million for home and community-based services over the past five years, but legislative researchers say 90 percent of that went to increasing fees paid to providers.
Officials said states first need to build a network of service providers and ensure they have enough workers.
“It’s very difficult to solve the waiting list problem without also addressing the workforce issue,” said Alice Barnes, KFF’s deputy director of the uninsured and state Medicaid programs.
But Nichols and other advocates said Kansas saw its waiting list grow because it didn’t put extra money into covering more individuals at the same time, something Barnes agreed the state must do.
With Kansas’ funding issues not expected to be resolved for at least another month, parents like Miller, Padding and Elskamp are juggling work, childcare and other responsibilities.
Sheridan Elskamp’s parents say they never leave her home alone because she is only 6 or 7 years old. When she was in high school, they adjusted their work schedules so one of them could be home when she was out of school, and Anna Elskamp took a demotion at the credit union where she worked to have more flexibility in her schedule.
Marvin Miller considers his family fortunate, even though he and his wife have not saved for retirement and they drive a 1999 truck. In addition to working as a teacher, he is an ordained pastor in the Assemblies of God Church, where he fills in for rural churches and those without a full-time pastor.
“I think as a society we have an obligation to take care of our most vulnerable people and help them succeed,” he said, searching for the right words.
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