- Hundreds of thousands of children with disabilities across the United States are on waiting lists for state compensation services.
- These services include day programs, employment assistance, and home care aimed at promoting independence and building work skills.
- Federal law does not require states to provide home- and community-based services, leading to variations in coverage from state to state.
When Lily Miller was in elementary school, teachers told her parents that once their youngest daughter, who has Down syndrome, grew up, the state would pay for the day program and they needed to get on the waiting list right away. Ta. Teachers predicted a six-year wait.
The Millers had been waiting 10 years. Lily is now 21 years old and graduated from a public school special education program in her hometown of Wichita, Kansas. Her parents are also teachers and employ an in-home caregiver. Marvin Miller said her one-day program, where she socializes while learning new job skills or applying existing skills, costs $1,500 to $2,000 a month.
Across the United States, hundreds of thousands of children, adolescents, and young adults with physical or intellectual disabilities are waiting for state compensation services. In Kansas, a legislative committee was scheduled to consider a funding increase Wednesday. But even with more funding, it could take years to clear the state’s waiting list.
Disability advocacy groups say voters with disabilities cannot access polling places
Services such as day programs, employment assistance, and home care are designed to promote independence and build work skills. Marvin Miller said without them, his youngest daughter doesn’t get enough social interaction. “We’ve actually seen her regress.”
Rick Elskamp sits with his oldest daughter, Sheridan, at the Elskamp family’s home outside Topeka on January 27, 2024, and talks about his frustrations with his 23-year-old daughter being on a long waiting list for services for the mentally disabled. . , thousands of residents with disabilities in Kansas and hundreds of thousands across the United States are on waiting lists for services. (AP Photo/John Hannah)
“The biggest fear of any parent is that one day I’ll be gone,” Miller said in an interview. “A place where if I’m gone in 15 years and something happens, she still has support and a community of friends and all the things that we take for granted when we work and work.” I want them to be there. I have neighbors.”
Parents across the United States are losing access to services for their developmentally delayed children. But many parents of children with intellectual or physical disabilities also have to think years ahead.
Kansas poised to expand tax credits to help workers with disabilities after debate over low wages
At least 692,000 people with physical or intellectual disabilities are waiting for services in at least 40 states, according to a November 2023 study by KFF, a health policy research organization. Federal law does not require states to provide home- or community-based services, and coverage varies.
Kansas expects to spend $776 million on these services for people with disabilities in its current budget. To eliminate the waiting list, that funding would need to increase by about 54% annually to about $1.2 billion.
However, Kansas’ budget surplus has been increasing 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 have both advocated large tax cuts, but cannot agree on the details.
Neil Romano, a member of the National Council on Persons with Disabilities, said that supporting families so that parents can be more productive at work, more responsive to family needs, and even take weekend breaks is “It’s simply a responsibility,” he said.
“You’re not just helping that family and that child,” he said. “You’re contributing to the community.”
Kansas has separate home and community service programs for people with physical and developmental disabilities, which together serve approximately 15,000 people. As of mid-February, the two waiting lists totaled about 7,500 people. This figure has increased by 37% over the past five years, despite increased funding.
Outside of Topeka, Sheridan, the eldest daughter of Rick and Anna Elskamp, is now 23 years old, and in December her family recently announced that she was removed from the Kansas waiting list for people with intellectual disabilities for the first time in 10 years. I was contacted. A month later, after more administrative hassles, they said they were still paying for the daycare services themselves.
They said navigating the state’s social services system is time-consuming, and Rick Elskamp said, “All the acronyms and abbreviations are a whole new language.”
The Republican-controlled Kansas Senate Budget Committee was set to consider Wednesday the Democratic governor’s proposal for an additional $23 million to reduce the state’s waiting list by a total of 500 people.
Republicans in the Republican-controlled House of Representatives were already working on a plan twice as large when Kelly outlined his proposal earlier this month, weeks after presenting a $25.6 billion non-budget budget proposal. . The plan was on the agenda of Wednesday’s House Budget Committee.
But disability rights advocates want lawmakers to act more aggressively, especially in attacking more permanent and extensive waiting lists for people with intellectual disabilities. They want to spend about $85 million more in the next budget, cut both lists by a total of 1,600 people, and eliminate both lists within five years.
Their plan would reduce waiting lists for people with intellectual disabilities by 1,100 people, rather than 250 or 500.
“Very typically, 300 to 400 people could be added to the waiting list in a year,” said Rocky Nichols, executive director of the Kansas Disability Rights Center and a former lawmaker. . “So 500 slots may not reduce the waiting list at all.”
Oklahoma has long struggled to serve residents with intellectual disabilities, with 5,100 people on waiting lists and some families waiting up to 13 years. As state revenue collections hit record highs in 2022, lawmakers raised provider rates by 25% and funneled additional funding to cover more people. We hope to serve everyone on that list as of this spring.
The Kansas Legislature has approved $283 million in additional spending for home and community-based services over the past five years, 90% of which went toward increasing fees paid to providers, legislative researchers say. There is.
Officials said the state first needs to build a network of providers and ensure it attracts enough workers.
“It’s very difficult to solve the waiting list problem without addressing the workforce issue,” said Alice Burns, KFF’s associate director of uninsured and state Medicaid programs.
But Nichols and other advocates said waiting lists are growing because Kansas hasn’t dedicated funding specifically to covering more individuals. Burns agreed the state must do the same.
U.S. Census Bureau faces backlash over proposed changes to disability question
Kansas’ funding problems aren’t likely to be resolved for at least another month. Parents like Miller, Pudding and Elskamp are juggling work, caring for their children, and advocating for their rights.
Sheridan Elskamp’s parents said they try not to leave her alone at home because she is cognitively at a 6- or 7-year-old age. When she was in high school, they arranged her work schedule so one of them would be home when she was out of school, and Anna Elskamp said she wanted her schedule to be more flexible. I received a demotion at my job at a credit union.
Marvin Miller considers his family lucky, but he and his wife can’t save for retirement and drive a 1999 truck. In addition to his teaching, he is an ordained minister in the Assemblies of God and serves in that role in local churches and among the permanent pastors.
“I think as a society, we have a duty to… take care of our most vulnerable people and help them succeed,” he said, searching for the right words.
