Advocates, Families Rattled After Medicaid Waivers Mistakenly Terminated

BALTIMORE — Nearly 300 people with developmental disabilities received letters earlier this year informing them that they were no longer eligible for certain Medicaid programs and would be kicked off their health insurance and community services.

But they were still eligible. The Maryland Department of Health had made a mistake.

Since then, following a “full and final review” in July, the health department said in a statement that it had reinstated 271 people into Medicaid waiver programs run by the Developmental Disabilities Administration. The department said those Maryland residents were inappropriately disenrolled, after staff wrongly determined they no longer met the programs’ asset eligibility requirements.

Advocates for people with developmental disabilities and their families who raised concerns about the disenrollment this summer said they are grateful that the health department redoubled its efforts to ensure staff made the right decision in certain cases. But many remain baffled by the error, which sent families into panic and left them scrambling to figure out how to care for vulnerable loved ones without health coverage or the help that programs provide.

The Developmental Disabilities Administration administers three Medicaid waiver programs to provide services and supports to people with disabilities who need varying degrees of assistance: the Family Support Waiver, the Community Support Waiver, and the Community Pathways Waiver.

In a typical year, advocates say, the Developmental Disabilities Administration reserves some spots in its Medicaid waiver programs for participants who are slightly over the asset limit when their eligibility is reevaluated. It would be one thing if a dozen or two people were kicked off the waiver, advocates said. But nearly 300?

“It’s a huge red flag,” said Randi Ames, managing attorney for Disability Rights Maryland. “It should have raised alarm bells.”

Ames said she continues to receive calls from people telling her the health department mistakenly decided they or their loved ones are no longer eligible to participate in Medicaid waiver services. While the health department might have made the right decision in her case, Ames said, after the series of erroneous determinations earlier this year, she and her colleagues are doing their own reviews to be sure.

Children’s advocates have also experienced other side effects from the flawed decisions. Families, including those who applied for their children to receive services under the state’s Autism Waiver and youth who have aged out of the Autism Waiver and have applied to receive other Developmental Disabilities Administration services, are having to wait longer than usual to hear back from the health department division responsible for determining who is eligible for services.

Ande Kolp, executive director of The Arc Maryland, an organization that advocates and supports people with intellectual and developmental disabilities, recalled the stories of several families who have been affected by the delays, which advocates believe have been exacerbated by efforts needed to address erroneous disenrollment.

“It’s been a relief that the department has acknowledged these issues,” Kolp said, “but that being said, we don’t have an infinite amount of time. Providers don’t have an infinite amount of time and families don’t have an infinite amount of time to deal with this while it’s being addressed. More attention needs to be paid to this.”

The Maryland Department of Health is “committed to ensuring that all Marylanders who are eligible for care and services have their applications processed and reviewed in a timely manner,” health department spokesman Chase Cook said in an emailed statement.

While there are some vacancies in the Eligibility Determination Division, Cook said, the department assigns people when needed to other areas that determine eligibility to ensure timely processing of applications. In line with Gov. Wes Moore’s plan to rebuild state government, the state health department is committed to reducing vacancy rates, Cook said.

It’s important to note, Cook said, that last year was unprecedented for Medicaid eligibility teams as they reviewed applications from all Marylanders who remained continuously enrolled in health coverage during the pandemic public health emergency. The federal government and the state changed the rules for Medicaid enrollment during the pandemic to make them more flexible, but that leniency has now ended.

The health department worked hard to ensure that people receiving services from waiver programs did not see any interruption in their services, Cook said. About 93% of the 4,299 people who had a redetermination date between May 2023 and April 2024 maintained coverage for another year, according to data Cook shared.

After reviewing the circumstances that led to the erroneous disenrollment, Cook said, the state health department is implementing additional training for staff on how to make correct eligibility decisions, strengthening quality assurance processes and determining how to improve its systems.

“All of these solutions will be aimed at preventing a situation like this from happening again,” Cook said.

Laura LeBrun Hatcher, whose 18-year-old son Simon has autism, cerebral palsy, epilepsy and other medical conditions, was one of the mothers who received a letter earlier this year. Because of her work with Little Lobbyists, a family-based organization that advocates for children with complex medical needs and disabilities, she had the contact information for Medicaid Director Ryan Moran, who helped ensure that Simon and others who wrongly received termination letters did not stop receiving support through the Autism Waiver.

Still, the letter unsettled her and her husband and made them worry about families who didn’t have that network. The state’s autism waiver allows Simon to work with a direct support person each week on skills to build independence. He also receives health coverage through Medicaid, which helps his parents pay for medication that prevents him from having life-threatening seizures and medical equipment that private insurance typically doesn’t cover.

“The drugs cost several thousand dollars a month,” said LeBrun Hatcher. “If we didn’t have insurance to cover them, we wouldn’t be able to come up with that money. I could probably get by with multiple credit cards, I don’t know. Fortunately, we didn’t have to tap into that money.”

Another mother, Nataki Suggs, who lives with her 23-year-old son in La Plata, has not been so lucky. For the past two years, she has been paid by the state health department to serve as a direct support person for her son, Josiah, who has autism and severe epilepsy, among other conditions.

In June, she received a letter from the Division of Eligibility Determination, informing her that Josiah had been reapproved for medical assistance and Community Supports Waiver services under the Developmental Disabilities Administration. But when she called her son’s caseworker, she was told that was not true and that his services would be terminated.

She is still waiting for the Eligibility Determination Division to review the paperwork she submitted proving Josiah’s eligibility and for the agency to evaluate his disability status. She said she will soon receive her last paycheck until he is reapproved for the program. Because she is unable to work outside the home, Josiah’s brother is considering leaving Bowie State University to get a job to help pay the bills.

“A lot of people are suffering in silence and I think the public needs to know that,” Suggs said. “This is a program for people who can’t help themselves.”

© 2024 Baltimore Sun
Distributed by Tribune Content Agency, LLC

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