Kyley Hamill describes herself as a helicopter parent. She has to be; in addition to the normal — often risky — toddler behavior, her 2-year-old son, Archer, has a rare genetic disorder and is on the autism spectrum. His complex health issues mean he needs constant monitoring.
“He has, essentially, the cognitive function of a 14-month-old. So, whereas he’s a little bit over 2, he is nonverbal,” Hamill said.
Hamill said Archer experiences dystonic movements, which causes his muscles to contract involuntarily and makes him fall.
The family, which also consists of Hamill’s husband and a 13-year-old son, lives in Independence, Missouri. She says Archer’s medical bills are overwhelming, but because she and her husband both work and earn too much to be eligible for Medicaid, they’re stuck making do with what they have.
Hamill said they’re hoping to obtain a special Medicaid waiver, called a Home and Community-Based Services waiver, to help fill in the gaps that Archer’s health insurance doesn’t cover. Eligibility for the waiver differs from traditional Medicaid eligibility. The waiver Hamill is trying to obtain, called the Missouri Children With Developmental Disabilities waiver, only takes the child’s income into account.
The HCBS waivers are part of a Medicaid program that states operate. The program looks different state by state, but its main goal is to provide services for older adults or people with disabilities that allow them to live in their communities instead of being institutionalized. The waiver pays for things like specialized therapies, in-home nursing care, personal care and respite care.
The Home and Community-Based Services waivers are a part of a Medicaid program that states operate.
Hamill and her family, like thousands of others nationwide, are waiting on these services. Midwest families said they face barriers like difficult assessments and waitlists several years long when trying to access HCBS waivers. And some said the struggle doesn’t stop after they access a waiver — utilizing the waivers can be difficult. Additionally, federal cuts to Medicaid may reduce benefits for some people with disabilities.
Hamill said she’d use the waiver to better safety-proof her home and pay for occasional respite care for Archer so she can spend more time with her older son.
“You always want to make sure that you have time for children equally, and right now, we’re not at that point,” she said. “I’m missing baseball games, I’m missing a lot of my older son’s life because of the fact that we do have a younger son that is medically complex.”
Alice Burns, associate director of the Program on Medicaid and the Uninsured for nonpartisan health policy research organization KFF, said about 650,000 people are on waiting lists for HCBS waivers nationwide, according to KFF’s survey for the 2026 fiscal year. Burns said that’s a 7% increase since 2025.
Iowa and Kansas have some of the largest waitlists for HCBS waivers in the region. Kansas’ largest waitlist is for its intellectual/developmental disability waiver. That waitlist has more than 5,000 people on it, according to data from KFF. Iowa’s largest waitlist is for its health and disability waiver. As of October, there are 13,196 people on that wait list.
Missouri technically doesn’t have a waiting list for its HCBS waivers. The state has what is called a processing list, which is used to keep track of people during enrollment when they have enough slots available for the waivers. In Nebraska, state lawmakers recently eliminated the waitlist for people with intellectual and developmental disabilities by injecting $18 million dollars from the state’s general fund and a Medicaid match into the program. That waitlist had more than 3,000 people on it as of 2024.
Burns said KFF has analyzed waiting-list data for a decade now.
“Waiting lists are a highly visible measure of unmet need and they can help us understand the gap between the people who have a need for long-term care and the availability for services, but also how that gap is changing over time,” Burns said.
“That being said, they are a highly imperfect measure of unmet need and they exclude many people, such as people who live in states where the services are not even offered.”
Burns said states are not required to offer HCBS waivers, but if they do, they have to follow federal regulations. She said to control spending, states often cap the amount of waivers they can give out, set limits on waiver spending, or set limits on the types of services offered by the waiver.
“States can’t even offer these services unless they can demonstrate to the federal government that the costs are no more than the costs of institutional care,” Burns said. “So, in some cases, the caps and limits are really to beat these federal requirements, not because of the state’s goals.”
Enrollment caps often lead to waitlists. States also cap enrollment sometimes because of workforce shortages, Burns said.
“What the states are trying to do there is prevent a situation where people are approved to receive waiver services and they get cleared to get the services and then they find out there’s no provider available,” she said.
Missouri’s processing list
For Hamill’s family, getting Archer the financial support he needs has been difficult. Hamill said she started by applying for Medicaid. Missouri has a spend down program, which allows older adults or people with disabilities (or their caregivers) who don’t meet income limits to qualify for Medicaid after “spending down” their excess income every month.
Because she and her husband make a little less than $130,000 a year before taxes, Hamill said the amount they would need to spend down each month is more than $3,000.
“That’s one-and-a-half of my paychecks per month,” she said. “So they’re basically putting you to a point where I shouldn’t be working. It’s getting it to the point of if I weren’t working, then I would have a zero spend down.”
But Hamill said she doesn’t want to quit her job.
“I am a mom. I am somebody that works,” she said. “I’m not just one thing. I enjoy working. I enjoy contributing.”
Hamill said because her family can’t afford the spend down, she applied for the HCBS waiver called the Missouri Children with Developmental Disabilities waiver. She said the process was really frustrating. In order to determine eligibility for the waiver, Archer had to be assessed. Hamill said his first assessment was in April, but he didn’t score high enough to qualify. The assessment measures things like a person’s communication and learning skills and ability to take care of themselves.
“I appealed his test from April and then you’ve got to go through that process and they can say, ‘yes’ or ‘no’ to that appeal,” she said. “We were lucky enough that they said ‘yes.’”
In addition to being on the autism spectrum, Archer has a rare genetic disorder caused by a mutation in the SCN8A gene. Hamill said the disorder is linked to Archer’s autism and global developmental delay diagnoses and causes gastrointestinal issues, sleep apnea and dystonia (a movement disorder that causes involuntary muscle contractions). Hamill said Archer needs lots of specialized therapies and doctor’s appointments.
The state scores a person’s need on a scale, one to five. People with the highest needs are prioritized for waiver services. On his second assessment in September, Archer scored four out of five. Hamill said he scored high enough to be eligible for the waiver.
“We don’t know how long he will be on that waitlist for, because it’s a process,” Hamill said.
Currently, the family is waiting to be assigned a case manager who can help create an individualized plan to determine what services Archer needs from the waiver, Hamill said.
Debra Walker, a spokesperson for the Missouri Department of Mental Health, said 18 people are on the Missouri Children with Developmental Disabilities processing list as of early October.
“When sufficient funding and slots are available, an eligible individual is added to the applicable waiver processing list for tracking purposes during enrollment,” Walker said in an email to The Midwest Newsroom. “Once they are enrolled, they are removed from the processing list. When funding and/or slots are not available, individuals are added to the applicable waitlist.”
They said the state offers 416 slots for the waiver, 16 of which are reserved for emergency situations. Walker said as of early October, 374 people were either enrolled or in the process of being enrolled in the Missouri Children with Developmental Disabilities waiver.
"Between me and Archer, I mean, we’re looking at, out of pocket, probably about $10,000, at the first of the year."Kyley Hamill, Missouri parent
“The average time it takes an eligible MO HealthNet (Mo HealthNet is Missouri’s Medicaid program) individual to enroll into a DDD (Division of Developmental Disabilities) waiver from a waiver list is approximately 3-4 months,” the spokesperson said in an email to The Midwest Newsroom.
Hamill said the wait feels like another hurdle in an already complicated process. She said she also has complex health issues, and the costs of her and Archer’s medical care adds up quickly.
“Between me and Archer, I mean, we’re looking at, out of pocket, probably about $10,000, at the first of the year,” Hamill said.
Hamill said their health expenses mean she has to make hard choices about finances. She said sometimes, she doesn’t tell her older son about birthday parties he’s invited to because they can’t afford a gift.
“It’s, you know, do I push off an oil change this month? Do I push off getting new tires, which is unsafe, but it’s knowing that he also needs to have these therapies,” she said.
Securing an HCBS waiver would hopefully ease some of the financial strain they’re under, Hamill said.
“I don’t think you can properly put into words what it would mean knowing that it could help keep your son as safe as possible and as cared for as possible,” she said.
Waiting in Kansas
Olathe, Kansas, resident Angela Hausman is making similar sacrifices while she waits for an HCBS waiver. She said she tries to eat as cheaply as possible.
“My grocery bill is less than a lot of what I would consider normal. So I eat a lot of oatmeal or if I get home from work, it’s like a bowl of cereal,” Hausman said. “But it’s OK, because it’s just temporary, I believe.”
After her best friend of 20 years died in December, Hausman took in her 7-year-old daughter, Everly.
Hausman, who is a single mom of three adult children, said it was like starting all over as a parent.
“I love having a whole other person in the house, but then there are days where it’s just really hard because Everly’s developmental age is about 16 months old,” she said. “She relies on me for every last bit of care that she needs.”
Everly is on the autism spectrum. Hausman said the child needs a feeding tube and is still in diapers. She said caring for Everly comes naturally to her, but it’s difficult doing it mostly alone, with occasional help from her adult children.
“The hardest part is just not having the ability to have breaks really ever,” Hausman said.
Hausman said Everly is on the waitlist for the Intellectual/Developmentally Disabled (I/DD) waiver. She said she’s still learning about the services the waiver covers, but she’d likely use it to help pay for Everly’s childcare after school or during breaks.
“If she has days off, people are wanting $20 to $25 per hour to watch her,” she said. “I currently make $24 an hour myself, so to pay somebody $20 an hour would literally be my entire day’s paycheck.”
“If she has days off, people are wanting $20 to $25 per hour to watch her. I currently make $24 an hour myself, so to pay somebody $20 an hour would literally be my entire day’s paycheck.”Angela Hausman, Kansas parent
But Hausman said she was told the waitlist for the Kansas I/DD waiver is eight years long.
“It’s defeating … I want to be somebody who is able to be out in the work field and providing for my family,” she said. “It’s almost like I can’t afford to work but I can’t afford not to work.”
Melissa Sabin is state outreach manager for Little Lobbyists, a nonprofit that advocates for kids with disabilities and chronic health conditions. Sabin is based in Kansas. She said waiting lists, access and eligibility for HCBS programs is different in every state.
Sabin said Kansas has a waiver for children who rely on medical equipment, like a ventilator, to live. She said that waiver doesn’t have a waitlist. But the waitlist in Kansas for the I/DD waiver has more than 5,000 people on it.
“In some ways, we have good supports and I think a lot of people, once you get on to the supports, are happy with what we have,” Sabin said. “But there’s such a shortage in funding and there is a lot of work to be done.”
Cara Sloan-Ramos, a spokesperson for the Kansas Department for Aging and Disability Services, said they’re working to ease the pressure on the I/DD waiting list by expanding waiver capacity.
“The Legislature has funded additional comprehensive I/DD waiver slots in recent sessions, and KDADS offers those slots as funding and capacity allow,” Sloan-Ramos said in an email to The Midwest Newsroom.
Just this month, the Kansas Department for Aging and Disability Services established the Community Supports Waiver. A spokesperson for the department said the waiver is designed for Kansans ages 5 and older with an intellectual or developmental disability who do not need professional around-the-clock care.
“Eligible individuals can receive services authorized by assessed need, up to a $20,000 annual limit, including personal care, life skills, and employment supports,” the spokesperson said in an email. “Accepting the Community Supports Waiver is a pathway off the comprehensive I/DD waiting list when a lower level of support meets the person’s needs.”
The spokesperson said the Kansas Department for Aging and Disability Services is inviting people who have been on the I/DD waitlist the longest to apply first for the new waiver.
Sabin said this is a step in the right direction. She said her organization is advocating for state legislators to fund more slots for the Community Supports Waiver to help chip away at the I/DD waitlist.
Sabin said advocates and families are also concerned about federal Medicaid cuts from the federal budget reconciliation bill, H.R. 1, potentially harming HCBS programs.
“There is an ongoing fight for adequate funding in Kansas,” Sabin said. “And there's a perfect storm coming because nobody understands how these cuts are going to affect us.”
No waitlist in Nebraska
Wendy Andersen is executive director of the Common Coalition, a nonprofit that advocates for people with disabilities in the Midwest, focusing primarily on Nebraska and Iowa. Andersen said before the state eliminated the waitlist for its developmental disabilities waiver, people waited for more than five years for services.
Andersen said the influx of about 3,000 people coming off the waitlist has exacerbated an existing shortage of providers.
“So now we have this availability of services, but they still aren’t able to access anything,” she said.
According to Nebraska Public Media, as of late June, less than half of the 3,000+ people offered waivers accepted them. And less than 25% of people who accepted were using the waiver for services.
As part of reducing the waitlist, in 2024, Nebraska introduced a new waiver called the Family Support Waiver. But, the waiver maxes out at $10,000 per year, and Andersen said this amount isn’t enough for most families.
“I mean, for some individuals, that could be a month depending on the level of care they need,” she said. “Some, it might be six months, but the thought was something is better than nothing.”
The Nebraska Department of Health and Human Services did not respond to requests for comment from The Midwest Newsroom.
A long wait in Iowa
In Iowa, more than 30,000 people are on waitlists for its seven HCBS waivers.
McKayla Muniz, her 10-year-old son and 13-year-old daughter live in Melcher-Dallas, Iowa, a rural town about 50 minutes from Des Moines.
Muniz’s son has autism and mental health disorders that cause outbursts, when he can hurt himself and others. She said she started seeking help for his behavior when he was just 2 years old.
“He was aggressive. He had slapped his sister and left a handprint on her face at 2,” Muniz said. Sometimes he would simply run off, she said.
Muniz said a social worker helped her apply for the Children’s Mental Health HCBS waiver. It currently has a waitlist of more than a thousand people. Muniz said it usually takes about two years to be approved, but she obtained the waiver after about a six-month wait because she applied for a special assessment to demonstrate urgent need for the waiver.
Muniz said services didn’t automatically start when they were approved for the waiver.
“What’s hard for families is like, you think that that means like, ‘Hey it’s happening now,’” Muniz said. “But they have to go through a whole assessment and everything so it could take months to still get like, actually on the waiver.”
Muniz said she uses the waiver primarily for respite care. She said she previously used respite care two weekends a month, but she’s reduced that to once a month now because it is hard to find providers who have availability and take her waiver in her area.
Respite care for parents like her, Muniz said, is incredibly important.
“My brain doesn’t get a break. I physically don’t get a break. I go to work and then I come home and I’m not just mom, I’m caregiver. I’m doing things that most parents don’t have to worry about,” she said. “It takes a big toll on parents’ health. It takes a big toll on siblings’ health.”
Muniz said she’s working through figuring out what else the waiver will cover. She said they’ve had to make modifications to her home to protect her son. They have to hide sharp objects, like knives and forks, to keep everyone safe.
She hopes to use the waiver to create a safe bedroom for her son in their basement. She said this would distance him from exits and her daughter. But Muniz said it’s difficult to get clear answers on what the program covers.
“I am a single mom. So I can only do so much. I can only work when they’re in school to accommodate their needs,” she said. “So, any resource that I can have, I want to utilize it to the maximum … because it takes something off my plate.”
Danielle Sample, a spokesperson for the Iowa Department of Health and Human Services, said the department recently updated the Waiver Priority Needs Assessment (the assessment Muniz used) and made it available online.
Sample said the amount of people who can be enrolled in an HCBS waiver is determined by the Centers for Medicare & Medicaid Services and available state funding.
“For individuals who received slots between June and September, average wait times ranged from 89 to 459 days for the BI (brain injury) waiver and 216 to 887 days for the ID (intellectual disability) waiver,” Sample said in an email to The Midwest Newsroom.
Sample said the state holds reserved capacity slots for people transitioning from institutional to community settings. She said the state has
“Iowa has strengthened the HCBS assessment process by transitioning assessments to an independent organization, CareStar,” she said.
Earlier this year, Muniz started a Facebook group called Navigating Iowa Waivers Support Group.
She said she’s spent countless hours researching HCBS waivers, so she created the group to help other families find answers and feel less alone.
Muniz said she hopes navigating the HCBS waiver system gets easier.
“Nobody’s going to fight for our children the way that we do,” Muniz said. “However, to be able to do it and not make it feel like it’s a full-time job on top of all of our other jobs would be amazing.”
Crisis criteria
Several states let people who meet a crisis exemption criteria skip the I/DD waiver waitlist line and obtain services. Anne Hayes and her son, Jack, who live in Overland Park, Kansas, got access to the I/DD waiver this way. Hayes said they’d been on the waitlist for four years when they got to a place where they desperately needed respite care.
Jack is 16 years old and 6 feet, 7 inches tall. He has autism and is mostly nonspeaking. Hayes said Jack is typically gentle and happy, but he doesn’t know his own strength and occasionally harms himself or others. Hayes said when Jack is struggling, his size makes it hard to keep him from hurting himself or other people. Because of this, they applied for the crisis exemption in March, and Jack qualified in August.
Hayes said Jack needs constant supervision and can’t be left alone in another room. She said she’s currently searching for a respite care provider to help give her and her husband time to rest.
“Weekend care is really the big thing for us. … I know this sounds like a silly thing, but my husband and I can’t do yard work together,” Hayes said. “We both cannot be outside focusing on something; one person’s focus has to be on our child.”
Hayes said she and her husband would also use the respite care to be able to spend more time with their younger daughter. She said she’s grateful they were able to obtain the crisis waiver, but the whole process needs to be easier on families.
"This was a very hard process to go through,” Hayes said. “We need to make this as a service and not go through a hundred barriers to get something at the end or make it feel completely unobtainable.”
METHODOLOGY
Bek Shackelford-Nwanganga interviewed researchers from KFF, advocates from Kansas and Nebraska, two Kansas families, a Missouri family and an Iowa family for this story. She sent questions and media requests to state agencies in Missouri, Kansas, Nebraska and Iowa. Shackelford-Nwanganga analyzed data from KFF and media coverage about home and community-based services waiting lists. She also reviewed social media posts and pages devoted to the difficulties people face when navigating certain Medicaid disability waivers.
REFERENCES
Number of People Waiting for Medicaid Home Care (HCBS), by Target Population and Whether States Screen for Eligibility (KFF | October 2026)
A Look at Waiting Lists for Medicaid - Home and Community - Based Services from 2016 to 2026 (KFF | October 2026)
Spend Down (Missouri Department of Social Services | Undated)
About SCN8A (The Cute Syndrome Foundation | Undated)
TYPE OF ARTICLE
News — Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources.
