Federal Medicaid officials say that multiple states may be improperly removing individuals from Medicaid, a program many people with disabilities rely on for everything from health care to home and community-based services.

The Centers for Medicare and Medicaid Services sent a letter to state Medicaid directors last week calling out practices that they say could be leading some people who should remain eligible to lose their coverage.

“CMS has learned of additional systems and operational issues affecting multiple states, which may be resulting in eligible individuals being improperly disenrolled,” reads the letter from Daniel Tsai, director of the Center for Medicaid and CHIP Services at CMS. “These actions violate federal renewal requirements and must be addressed immediately.”

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During the COVID-19 public health emergency, states were offered extra federal funding for Medicaid so long as they did not kick most people off of the program. But with the end of the public health emergency in May, states are now working to redetermine whether each of their Medicaid beneficiaries continues to qualify for the program for the first time in years.

As of late August, states have disenrolled more than 5.5 million Medicaid beneficiaries, 74% of which were for procedural reasons like not completing required paperwork on time, according to data from KFF, a nonprofit that conducts health policy research.

The concerns raised by CMS center on what are known as “ex parte” renewals, or situations where state Medicaid programs are using existing data to automatically renew coverage for certain beneficiaries. The agency said it believes that eligibility systems in several states have programming errors so that automatic renewals are happening at the family level rather than the individual level.

As a result, states may be sending renewal forms directed at entire households even though certain individuals within the household should qualify for automatic renewal. In some cases, states have then proceeded to terminate coverage for those individuals if other members of their household have not adequately responded.

“Any state that conditions renewal of Medicaid eligibility for individuals in the household on the return of a renewal form, when such individuals’ eligibility has already been established based on available information via the ex parte process, is out of compliance with longstanding federal Medicaid and CHIP renewal requirements,” the guidance states.

CMS did not specify the states where the problem has been identified, but all states are being asked to review their systems and respond to the agency by Sept. 13.

States that are out of compliance must immediately pause procedural disenrollments for everyone impacted, reinstate coverage for affected individuals, implement mitigation strategies and fix their systems and processes to meet federal requirements, Tsai said. States that don’t course correct risk losing out on federal funding or being subject to a corrective action plan, the letter indicates.

CMS said the problem it identified is having an outsized impact on children, who often have higher Medicaid eligibility limits than adults, but disability advocates said that people with disabilities who live with family are also at risk.

“Anecdotally, we are hearing that the redetermination process has been opaque, confusing and inconsistent for many beneficiaries,” said Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. She cited cases where people have been told that they would remain eligible for Medicaid and then they’ve been kicked off. In other instances she said individuals only learned their coverage was revoked when they went to use their insurance and then they’ve been left to spend days trying to find out what happened.

“The CMS letter to states is an important step, but there is more that CMS needs to do,” Gross said. “CMS should name the states that are wrongly disenrolling people from Medicaid, and push states to do much more than they are currently doing to make this process fair and navigable for beneficiaries.”

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