OTTUMWA, Iowa \u2014 Leisa and Kent Walker recently received a disturbing notice: The private company managing their son\u2019s Medicaid coverage intends to cut nearly 40% of what it spends for caregivers who help him live at home instead of in a nursing home. <\/p>\n
Sam Walker, 35, has severe autism and other disabilities. He is deaf and cannot speak. Sometimes when he\u2019s frustrated, he hits himself or others.<\/p>\n
Medicaid provides about $8,500 a month for health workers who visit his apartment in the basement of his parents\u2019 home. The staffers help him with everyday tasks, including dressing, bathing, and eating. They also take Walker on outings, such as dining at restaurants, volunteering at Goodwill, and exercising at a recreation center or on park trails. They stick to a strict routine, which soothes him.<\/p>\n
His parents say that without the in-home services, their son would need to move to a specialized residential facility in another state. Sending him away would break their hearts and cost taxpayers much more money. They strive to keep him home because they know change makes him anxious.<\/p>\n
\u201cThe last thing I want is to put him into some kind of care facility, where he\u2019ll just get kicked out,\u201d said his mother, Leisa. The Iowa Department of Health and Human Services did not respond to KFF Health News\u2019 questions about the Walkers\u2019 case.<\/p>\n
Federal Cuts Raise Pressure<\/strong><\/p>\n Patient advocates say state administrators in Iowa appear to be reining in Medicaid spending by cutting what are known as home and community-based services for people with disabilities, and they\u2019ve heard of multiple families facing battles like the Walkers\u2019.<\/p>\n Disability rights advocates expect the pressure to intensify as states respond to reductions in federal Medicaid funding called for under the Trump administration\u2019s signature tax and spending law, which passed last year.<\/p>\n June Klein-Bacon, CEO of the Brain Injury Association of Iowa, said the cuts and proposed rule changes appear to be part of a quiet attempt to save money in response to the state\u2019s budget deficit and expected reductions in federal Medicaid funding.<\/p>\n Medicaid, jointly financed by the federal and state governments, covers people with low incomes or disabilities. Walker is one of nearly 2 million people<\/a> served by \u201cMedicaid waiver\u201d programs, which pay for care that allows people with disabilities or who are at least 65 to live at home.<\/p>\n Unlike most parts of Medicaid, waiver programs are optional for states. Idaho\u2019s governor noted that fact in January, when he suggested legislators consider cutting them. Disability rights groups fear other states will do the same. Leaders in Colorado<\/a>, Missouri<\/a>, and Nebraska<\/a> have considered such cuts this year.<\/p>\n Leisa Walker has heard Trump administration officials claim the national Medicaid cuts are intended to reduce waste, fraud, and abuse. That\u2019s not how it will play out, she said. \u201cThese are real people, real families, and this causes real suffering when you do this to people,\u201d she said. \u201cIt\u2019s a very scary time.\u201d<\/p>\n Iowa Total Care,<\/a> a private insurance company that manages Sam Walker\u2019s Medicaid benefits, intends to cut his in-home care coverage by about $3,200 per month, his mother said. Company leaders told a judge they are following state officials\u2019 direction, but they did not dispute Leisa Walker\u2019s math.<\/p>\n Walker has been on the waiver program for three decades. It covers assistance from workers known as \u201cdirect service providers\u201d \u2014 one of whom has been with him for 25 years. His parents receive no pay for the hours they spend caring for him when the aides aren\u2019t working.<\/p>\n On a February morning, Leisa and Kent Walker drove an hour and a half to Des Moines for an appeal hearing. An administrative law judge sat behind a wooden desk in a conference room as the Walkers and their lawyer faced off against three representatives from Iowa Total Care, a subsidiary of the national insurer Centene Corp.<\/p>\n Leisa testified that her son is 6 feet tall and weighs 230 pounds. Although he knows some sign language, he has trouble communicating, she said. When he becomes frustrated or his routine is interrupted, he sometimes wails and hits himself or other people. \u201cIt\u2019s devastating to watch,\u201d she testified.<\/p>\n He\u2019s not a bad person, she said. \u201cHe doesn\u2019t understand how strong he is.\u201d<\/p>\n She said her family would try to keep his main caregiver employed under the planned Medicaid reduction but would have to drop others who cover nights and weekends. She said no residential facility near their southern Iowa home could address her son\u2019s complicated needs. She said a case manager told her that a Florida facility might be the closest one that could safely handle him.<\/p>\n Leisa Walker testified that the state\u2019s Medicaid program would pay about $22,000 per month to put him in an institution, more than double what the program spends on his home care.<\/p>\n Sam Walker\u2019s longtime psychiatrist, Christopher Okiishi, testified that Walker\u2019s family and their support staff spent years developing a \u201cfragile\u201d but stable existence for him.<\/p>\n Lori Palm, a senior manager for Iowa Total Care, testified that Sam Walker gets about 16 hours of daily assistance financed by Medicaid. Palm said much of that time amounts to \u201csupervision.\u201d She said state officials recently advised her company that the program should pay mainly for \u201cskill-building\u201d time, not supervision.<\/p>\n The Walkers showed the judge a 2018 document in which a previous Iowa Medicaid director stipulated that supervision of people with disabilities is an allowable service for workers paid under the program.<\/p>\n Judge Rachel Morgan asked the Iowa Total Care representatives if the recent policy change was made in writing by the state Department of Health and Human Services. They said it was not and that they couldn\u2019t specify who at the department had given them the new guidance.<\/p>\n The judge suggested during the hearing that for someone like Sam Walker, learning to regulate emotions could be an important form of skill-building. Three days later, the judge ruled in the Walkers\u2019 favor, writing that the insurer\u2019s attempt to cut care hours was improper. The insurer appealed the decision to the director of the Iowa Department of Health Human Services, who could overrule it. The dispute could eventually wind up in district court.<\/p>\n Iowa Total Care and the state Department of Health and Human Services did not respond to questions about the reports that many other Iowans with disabilities face reductions in care hours covered by Medicaid. Department spokesperson Danielle Sample said in an email that the agency supports home and community-based services, which, she noted, help \u201cstates save money by avoiding expensive long-term facility care.\u201d<\/p>\n Spokespeople for the federal Department of Health and Human Services, which oversees Medicaid nationally, did not respond to a request for comment on the issue.<\/p>\n Medicaid waiver programs started in the 1980s, after President Ronald Reagan heard about an Iowa girl with a disability who was forced to live in a hospital for months because Medicaid wouldn\u2019t pay for home care. The Republican president thought it was outrageous that the girl, Katie Beckett,<\/a> had to live that way, even though home care would have been cheaper.<\/p>\n Members of Congress approved allowing states to use their Medicaid programs to pay for in-home care. But they made the change optional, to offer states flexibility and encourage innovation.<\/p>\n Designating such spending as optional \u201cwaiver programs\u201d also made the change more politically palatable, said Kim Musheno, senior director of Medicaid policy for The Arc of the United States<\/a>, which represents people with intellectual and developmental disabilities.<\/p>\n Prospects were much different for babies born with serious disabilities before the change, Musheno said. \u201cDoctors instructed families to forget they existed, and to put them in an institution.\u201d<\/p>\n Waivers Have Been Cut Before<\/strong><\/p>\n All states have Medicaid waiver programs, but benefits and the number of people covered vary significantly. Applicants often wait months or years to get into the programs because of limited funding. More than 600,000 Americans were on waiting lists or \u201cinterest lists\u201d for waiver services in 2025, according to KFF<\/a>, a health information nonprofit that includes KFF Health News.<\/p>\n Disability rights advocates and care providers have fought for decades to maintain funding for the programs, but a national leader said the threat feels especially severe now.<\/p>\n \u201cWhen Medicaid is cut, people with disabilities are at the center of the impact,\u201d said Barbara Merrill, CEO of the American Network of Community Outcomes and Resources, which represents agencies that care for people with intellectual disabilities or autism.<\/p>\n That\u2019s what happened after Congress reduced Medicaid funding in 2011, according to a recent paper published by Health Affairs<\/a>.<\/p>\n States could again rein in waiver programs by limiting enrollment, reducing covered services, or cutting pay for caregivers, who already are in short supply.<\/p>\n However, states that try to cut the in-home care programs could face legal challenges, Musheno said. The U.S. Supreme Court declared in 1999 that people with disabilities have a right to live outside of institutions if possible. The decision, in the case of Olmstead v. L.C.<\/a><\/em>, has been cited in lawsuits against states that fail to provide care options apart from nursing homes and similar facilities.<\/p>\n Several Iowans who belong to a Facebook group for Medicaid participants have posted in recent weeks that their families were notified of impending cuts in coverage of home care services for people with disabilities.<\/p>\n Sam Walker\u2019s main caregiver, Andy Koettel, has worked with him since Walker was in fourth grade. Koettel, who works full-time, knows how to keep Walker calm in most situations and soothe him during a blowup. Their relationship took years to build, and it is a key reason Walker can continue to live at home with his parents, Koettel said.<\/p>\n \u201cIf I was not there, it would be incredibly difficult for all of them,\u201d he said.<\/p>\n\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/p>\nUSE OUR CONTENT<\/h3>\n