Iowans who need disability services face up to five-year wait

Gauri McClure thrives on structure. At 8 years old she was diagnosed with focal dermal hypoplasia — a genetic disorder that affects her eyes and other organs and causes developmental delays that make it hard for her to stay organized and on time without help.

Now 16, Gauri relies on her mother’s planning to stay on task.

“As a soon-to-be 11th-grader, she can't tell time,” Gauri’s mother, Karla McClure, said last month. “She cannot count money. She doesn't know what tomorrow means or what ‘in an hour’ means. She doesn't have a sense of time whatsoever.”

As a single, working parent, Karla isn’t always able to be around to help Gauri, so she does a lot of advanced planning. Karla leaves for work each morning before Gauri has to get herself to the bus for school, so she leaves Gauri with a detailed morning cheat sheet outlining exactly when she needs to brush her teeth, take out the dogs, lock the door and begin walking to the bus stop.

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“Gauri needs a lot of structure in order to function well. She's mobile. She moves around. She talks, but her processing is very slow, and if there are any changes, she has a hard time understanding how that change will impact herself and others,” Karla said.

Karla works as a special-education teacher at Linn-Mar High School. She previously worked as the director of special education at Prairie High School, and has worked in other administrative roles, but left administration when she got the notice 10 years ago that she and her then-husband would be able to adopt Gauri, who was born in India.

Because of her experience working with special needs students and families, Karla knew when Gauri was diagnosed that she would want respite services, like a home nursing system, by the time Gauri was in high school. What she didn’t know was how long it would take to get approved for those services.

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Respite services are available through the Iowa Medicaid program. Beyond providing basic health insurance for those who can’t pay for it themselves or access it through employment benefits, Medicaid also covers the costs of needed services and equipment that aren’t covered under most private insurance plans for people with disabilities. These needs include things like respite care, wheelchairs, occupational therapy, and other services.

In order to access disability services through Medicaid, a person has to be approved for a disability waiver, meaning the income requirements for Medicaid are waived. There are currently seven disability waiver categories in Iowa: elderly; physical disability; health and disability; brain injury; AIDS/HIV; intellectual disability; and children’s mental health.

When Karla was the director of special education at Prairie, she often worked with families who applied for and received a disability waiver within a few months or a year.

But when Karla filled out an application for Gauri’s Medicaid waiver two and a half years ago, she was told the wait would be up to five years. Now she’s just hoping to have access to respite care by the time Gauri graduates high school.

“I think from Gauri’s standpoint, she’s very limited, because Mom can only do so much and take her out so much. A respite worker could take her out and we could send her bowling, or we could send her to a music concert or something,” Karla said. “I think it’s more about what Gauri is missing by not having the services more than what I am.”

Why is the wait so long?

There are many factors that contribute to the long waitlist for Medicaid waivers, but it mostly comes down to a lack of funding, according to Theresa Lewis, executive director of The Arc of East Central Iowa. The Arc is a nonprofit agency that provides disability services.

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“Medicaid doesn’t have a ton of money, and their budget keeps getting cut every year. Waivers mean that you get any service that you qualify for, for free. So, somebody has got to pay for that,” Lewis said.

Iowa overhauled its Medicaid system in 2016, switching from a state-run insurance program to a managed-care model, which utilizes three out-of-state insurance companies to manage Medicaid coverage for Iowans. Lewis said she believes that change has contributed to the funding issues that providers are seeing now.

“Prior to that, providers got regular increases that mostly kept up with the cost to provide the service,” Lewis said, adding that managed care “made things difficult for a lot of providers, The Arc being one.

“If you look back at the history of our budgets, it was positive, positive, positive, until 2016, when managed care took over and it wasn’t as positive. Then in 2017 and 2018, it was negative,” Lewis said.

Decreases in funding also have made it harder for providers of disability services to attract and retain employees, a problem that was exacerbated by the COVID-19 pandemic. According to Lewis, the pandemic was a major turning point in the increasing waiting list times.

“Maybe there was a couple year wait before the pandemic, but then it really skyrocketed to four or five years since then,” Lewis said.

Effect on families

Some families are able to start the process of applying for a disability waiver as soon as their child gets a diagnosis. For others, it takes time to figure out how to even start the process, said Jenny Bosking, the development and communications director for The Arc of East Central Iowa.

“Everybody has a complication. Even if you are right on top of it at age zero, you still have to wait five years, but think about when you have a seventh-grader, and you’re dealing with the day-to-day — 24 hours a day — care, and you have to fill out this really complicated paperwork, and by the way you’re going to wait five years,” Bosking said.

The longer families have to wait to access disability services, the worse some of the symptoms of disability can become.

“If a child has significant mental health needs, and they are not on a child mental health waiver and they don’t have access to other support, they may end up in the hospital because their family is unable to meet the mental health needs,” Tresa Stearns, community based manager for Tanager Place, said.

“They may be struggling in school and end up in different scenarios in school where they are getting kicked out, or getting suspended, or not being able to attend regular classes. Those sorts of things are things that families are running into, because of that.”

Tanager Place is a Linn County nonprofit that provides case management services for children on the mental health waiver and has an Integrated Health Program in which families that aren’t on the waiver yet can get help filling out applications.

Stearns said the difficulties families face don’t always stop once a waiver is acquired. Iowa Medicaid requires anyone who has a waiver to use one of the available services once per quarter in order to keep the waiver. But because so many providers are struggling to retain staff, families often face another set of waiting lists as they try to find someone who offers the services they need.

Some families are able to get onto the waiting list for a provider when they know they’re getting close to reaching the end of the waiver waiting list, but not everyone knows when to start that process.

“It’s a systemic issue because once they get on the Child Mental Health waiver, they have to use a service but those services aren’t always available to them, or they’re on a waitlist for those because the reimbursement rate is so low and we don’t have enough providers,” Stearns said.

HOME project

New changes are coming to the Iowa Medicaid waiver system under a project called Hope and Opportunity in Many Environments, or HOME, and state officials are hopeful that it will improve the efficiency of the waiver waiting lists.

The Iowa Department of Health and Human Services still is developing the details of the program, which could launch by July 2025, according to a concept paper published in April. The program would reduce the number of waiver categories, and make them more customizable to ensure each individual has access to the right services.

Currently, within the seven categories of disability waivers, each waiver has a distinct service package offering specific benefits. Some services are offered on multiple waivers. For example, all the waivers except the physical disability waiver include respite services, but the children’s mental health waiver is the only one that includes in-home family therapy.

Under the proposed new system, there would only be two waiver categories: one for individuals age 20 and younger, and another for people who are older than 20. The services covered by a waiver would depend on the individual. Each applicant’s needs would be examined on an individual basis to ensure that their one waiver covers all the services they need.

Currently, Iowans with multiple disabilities, or who need a variety of different services, are on waiting lists for more than one type of waiver. The new system would help address long waiting lists and would consolidate it to one waiting list per person. Currently, only two waivers — AIDS/HIV and Elderly waivers — do not have waiting lists, according to the concept paper.

The other waivers’ waiting lists included 14,022 people as of December 2022, according to data published during the 2023 legislative session. Of those, 5,236 were people on two or more lists.

The state’s Health and Disability waiver had the longest list, according to the 2023 list, with 6,862 people on it. The person who was next in line to receive the health and disability waiver as of Dec. 31, 2022 had been on the list for four years, five months, and six days. The waiver with the longest waitlist was Brain Injury, and the next person in line on the list had been waiting five years, eight months, and 27 days.

The number of Iowans on waiting lists for all disability waivers, as of December 2022, were as follows:

“Future waitlists would include an assessment and prioritization system to ensure that Iowans with the highest need can access services in a timely fashion,” the concept paper for the new program reads. “Population groups that currently do not face waiver waitlists may be placed on a waitlist if an assessment determines they have lower needs.”

Iowa HHS did not respond to multiple requests for comment about the new program.

The state has been gathering feedback from individuals and families who use the waivers as part of the redesign process, but a lot of families still don’t fully know what to expect, said Crystal Hall, director of community based and prevention services at Tanager Place.

“I think the state has done what they can to share the fact that the redesign will be happening, but I would also say from a consumer level, it's probably not very top of mind for some of these families,” Hall said. “They're treading water. They're just trying to get through the day,” Hall said.

Comments: (319) 398-8328; emily.andersen@thegazette.com