Advocates, families rattled by mistaken termination of Medicaid program participation

Nearly 300 people with developmental disabilities received letters earlier this year informing them they were no longer eligible for certain Medicaid programs and would be booted from their health insurance and community-based services.

But they were still eligible. The Maryland Department of Health had messed up.

Since then, following a “full and final review” in July, the health department said in a statement that it has reinstated 271 people in Medicaid Waiver programs run by the Developmental Disabilities Administration. Those Marylanders were inappropriately disenrolled, the department said, after staffers erroneously determined they no longer met the programs’ asset eligibility requirements.

Advocates for people with developmental disabilities and their families who raised concern about the disenrollment this summer said they’re grateful the health department doubled back to make sure staffers made the right call in certain cases. But many remain unnerved by the mistake, which panicked families and left them scrambling to figure out how to care for their vulnerable loved ones without the health coverage or help provided by the programs.

The Developmental Disabilities Administration runs three Medicaid Waiver programs to provide services and support for people with disabilities who need varying degree of help: the Family Supports Waiver, Community Supports Waiver and Community Pathways Waiver.

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

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

Ames said she is still receiving calls from people who tell 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 call in their case, Ames said, after the batch of erroneous determinations earlier this year, she and her colleagues are doing their own reviews to be sure.

There also have been other ripple effects from the erroneous determinations, advocates said. Families — including those who applied for their children to receive services under the state’s Autism Waiver and young people who have aged out from the Autism Waiver and have applied to receive other services from the Developmental Disabilities Administration — are seeing longer than usual waits to hear back from the health department division responsible for determining who is eligible to receive services.

Ande Kolp, executive director of The Arc Maryland — an organization that advocates for 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 the mistaken disenrollment.

“It’s been a comfort that the department has acknowledged these issues,” Kolp said, “but that said, we don’t have endless amounts of time. Providers don’t have endless amounts of time and families don’t have endless amounts of time to weather this while it gets fixed. There needs to be more attention on this.”

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

While some vacancies exist in the Eligibility Determinations Division, Cook said, the department assigns people when necessary to other areas that determine eligibility to ensure the timely processing of applications. Consistent with Gov. Wes Moore’s plan to build back the state government, the state health department is committed to reducing vacancy rates, Cook said.

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

The health department worked hard to ensure people receiving services from waiver programs didn’t 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 staff training on how to make correct eligibility decisions, strengthening quality assurance processes and figuring out how else to improve its systems.

“All of these solutions will aim to prevent a situation like this from happening again,” Cook said.

Laura LeBrun Hatcher — whose son, 18-year-old Simon, has autism, cerebral palsy, epilepsy and medical conditions — was one of the parents who received a letter earlier this year. Because of her work with Little Lobbyists, a family-led organization that advocates for kids with complex medical needs and disabilities, she had the contact information for Medicaid Director Ryan Moran, who helped make sure Simon and others who erroneously received termination letters didn’t stop receiving support through the Autism Waiver.

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

“The medications are several thousands of dollars every month,” LeBrun Hatcher said. “If we didn’t have insurance to cover it, we might not be able to come up with that money. I could probably figure it out with multiple credit cards, I don’t know. Luckily, we didn’t have to go there.”

Another parent, Nataki Suggs — who lives with her 23-year-old son in La Plata — hasn’t been so lucky. For the last two years, she’s been paid by the state health department to serve as a direct support person for her son, Josiah, who has autism and severe epilepsy, along with other conditions.

In June, she received a letter from the Eligibility Determination Division, informing her that Josiah was re-approved to receive medical assistance and services from the Community Supports Waiver under the Developmental Disabilities Administration. But when she called her son’s caseworker, she was informed that wasn’t true and that his services would be terminated.

She’s still waiting for the Eligibility Determination Division to review the paperwork she submitted, showing Josiah’s eligibility, and for the agency to evaluate the status of his disability. Next week, she said, she’ll be receiving her last paycheck until he is reapproved for the program. Since she’s unable to work out of the house, Josiah’s brother is considering leaving Bowie State University to get a job to help her pay the bills.

“So many people are suffering in silence, and I believe the public needs to know,” Suggs said. “This is a program for people who cannot help themselves.”