As the focus on COVID-19 fades and the federal government eyes an end to the emergency status that the pandemic triggered, officials are warning that big changes are coming for some disability programs.

Currently, the nation is under a public health emergency. With that in place, states have been able to access extra federal money for Medicaid so long as they do not drop most beneficiaries from the program. Federal officials also granted extra flexibility to home and community-based services providers who have been struggling to maintain staffing during the pandemic.

U.S. Secretary of Health and Human Services Xavier Becerra recently extended the public health emergency until July 15, but it’s unknown if the Biden administration will renew the designation beyond that point. Now, the Department of Health and Human Services’ Administration for Community Living is telling people with disabilities to be prepared.

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“When the federal declaration of a public health emergency (PHE) expires, many of the flexibilities initiated during the PHE will need to be rolled back. This return to pre-pandemic operations will have far-reaching impacts for older adults and people with disabilities,” reads a notice from the agency. “Changes in Medicaid enrollment and eligibility will be particularly important — and potentially confusing or disruptive — for current enrollees.”

Once the emergency status expires, states will have 12 months to re-evaluate the eligibility of almost every one of their Medicaid beneficiaries.

A new fact sheet from the Administration for Community Living advises Medicaid beneficiaries to ensure that their contact information is current with their state’s program and to mail back any Medicaid forms they receive. Individuals who lose their coverage due to an error can request an appeal, the fact sheet indicates.

“Once the PHE ends, millions of people on Medicaid, including people with disabilities, will have to go through a redetermination process where their financial eligibility is reassessed. This can be complicated and there are frequently mistakes made or people inadvertently don’t fill out the right paperwork etc.,” said Bethany Lilly, senior director of income policy at The Arc.

The situation could be even more complex, Lilly noted, if people are trying to sort out issues with Social Security, which just reopened its field offices after being closed for more than two years.

The Biden administration has committed to provide at least 60 days notice before the public health emergency ends. But, disability advocates are pushing for more time, arguing that states are ill-prepared.

Beyond redeterminations for Medicaid beneficiaries, advocates say that states need more guidance on what tools they will have to address the challenges of maintaining their workforce of direct support staff once some of the pandemic-related flexibilities they’ve been taking advantage of are no longer available.

“We urge HHS to not end the PHE until the agency can be sure that states and providers have sufficient staffing, processes, and plans in place to ensure access to HCBS and prevent individuals from being wrongly removed from benefits,” reads a recent letter to Becerra and Chiquita Brooks-LaSure, administrator of the Centers for Medicare & Medicaid Services, from the Disability and Aging Collaborative that was signed by over 30 advocacy groups.

In particular, a modification of states’ Section 1915(c) Appendix K emergency authorities has allowed for the use of telehealth and adjusted staffing ratios for Medicaid home and community-based services, said Elise Aguilar, director of advocacy at the American Network of Community Options and Resources, or ANCOR.

“ANCOR appreciates the guidance CMS has issued to state health officials to promote continuity of coverage for Medicaid beneficiaries, but also urges the administration to continue to provide additional guidance to states to address the direct care workforce crisis prior to the end of the PHE,” Aguilar said. “Without such additional guidance and support, people with I/DD risk losing their already-threatened access to home and community-based services that have been essential to so many people throughout the pandemic and will continue to be even after the PHE has ended.”

A spokesperson for the Centers for Medicare & Medicaid Services said that “ensuring states are prepared to return successfully to normal eligibility and enrollment operations is a top priority.” And, CMS pointed to a recent investment of $12.7 billion for home and community-based services that was part of the American Rescue Plan as one of several actions the agency has taken to address the shortage of direct support professionals.

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