Many of the pandemic-era policies that benefited people with disabilities are set to expire and the implications could be significant, advocates say, touching everything from health care to home and community-based services.

After more than three years, the Biden administration let the public health emergency spurred by the COVID-19 pandemic end this week. The change in status will alter the availability of testing, vaccines and treatments for the coronavirus. It will also impact disability services in ways that have little to do with COVID-19 itself.

Under the emergency status, states received extra federal funding for Medicaid if they agreed not to drop most beneficiaries. Now, however, with that ending, states are in the midst of a massive effort to re-evaluate everyone on Medicaid to determine if they remain eligible and some states are starting to terminate people from the program this month.

Advertisement - Continue Reading Below

Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, worries that people with disabilities could be cut off in error.

“Some who may qualify for Medicaid for reasons besides disability, such as poverty, may lose coverage and people who qualify for Medicaid because of disability may still lose coverage because of the administrative burden of proving that they still qualify,” she said. “Many autistic people rely on Medicaid for home and community-based services and the unwinding puts those services at risk.”

Advocates have been warning for months that Medicaid beneficiaries will need to be in compliance with financial eligibility requirements. Individuals should also ensure that their contact information is up to date with their state and that they respond to any Medicaid inquiries.

Meanwhile, disability service providers are bracing for regulatory flexibilities tied to the public health emergency to sunset and for extra home and community-based services funding that was made available through the American Rescue Plan to end next year. As a result, efforts to increase wages for direct support professionals or to pay family caregivers, among other initiatives, may be rolled back.

“This has left providers with concerns about losing the funding needed to pay adequate wages and deliver services, along with concerns about increased administrative burden as we set the clock back to the pre-pandemic era,” said Elise Aguilar, director of federal relations at the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation.

An ANCOR survey of providers last fall found that 66% were concerned that the end of the public health emergency would lead to increased staff vacancy and turnover.

“How the end of the public health emergency is felt really depends on the state you live in, but for all states, it will likely be disruptive, opening the door to a good amount of uncertainty in the weeks and months ahead,” Aguilar said.

All the while, people with disabilities continue to be disproportionately impacted by COVID-19, according to Maria Town, president and CEO of the American Association of People with Disabilities. She noted that over a thousand Americans continue to die each week from COVID-19, a significant number of whom are people with disabilities and older adults, particularly those living in congregate settings.

“Losing access to health care, remote participation options, more limited availability of testing, the loss of vaccine and mask mandates in congregate settings and health care settings during this time will have devastating consequences,” Town said.

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.