What will the end of the COVID-19 Emergency Mean For Disabled People?

The White House announced on January 30 that the public health emergency regarding COVID-19 would end next month. For millions of people it will represent the end of services and support they rely on.

People who receive home and community-based services (HCBS) are at a higher risk of serious illness or death from COVID-19 exposure, and they are more likely to require hospital or nursing facility care if HCBS are not available. However, throughout the pandemic, there have been fewer employees available and ready to provide services, and extra precautions were required to avoid COVID-19 infection. Recognizing these problems, the federal government granted states extra authority to ensure continued access to HCBS throughout the public health emergency.

According to estimates from The Congressional Budget Office, around six million people utilized HCBS in 2020. Home and community-based services are delivered in people’s homes and other non-institutional settings. They are available to people who require them due to aging, chronic illness, or disability. Examples of covered services under an HCBS waiver can include hospice care, durable medical equipment, home-delivered meals, and home healthcare.

Medicare and private insurance companies don’t cover home and community-based services. In 2020, Medicaid spent $162 billion on home and community based services, representing the vast majority of total HCBS spending. The same year, Medicaid spent $245 billion on home and community based services altogether, according to Kaiser Family Foundation.

States responded to the COVID-19 PHE using a variety of responsibilities, including disaster-relief state plan revisions, 1115 waivers, and Appendix K changes to 1915c waivers. When the Public Health Emergency (PHE) expires on May 11, 2023, any changes made by a disaster-relief state plan amendment or 1115 waiver will likewise expire. Changes made under the Appendix K authorization will expire six months after the Public Health Emergency ends (December 11, 2023).

Appendix K was the most often used authority, with 437 changes to HCBS programs made under it. Changing processes for establishing eligibility, authorizing services, and paying providers; increasing provider qualifications or which providers are eligible to be paid; and expanding service delivery models are examples of Appendix K implementations.

One upcoming change will mean family members will no longer be allowed to receive pay for the care they provide. 39 states reported reacting to labor difficulties by paying family caregivers during the public health emergency but only 20 plan to continue this practice once the public health emergency expires.

In Oregon, Senate Bill 91 and Senate Bill 646 would pay parents of about 1,000 children with the highest medical and behavioral health needs to care for them. The bill would allocate $3 million in state funds over the next two-year budget, less than what other proposals that would have included more children would cost.

Charlee Eklund, is six years old. She uses a wheelchair, cannot speak, and requires a feeding tube for nutrition. Her mother Lenore Eklund was hired by the state two years ago to be Charlee’s caregiver.

Medicaid’s home and community-based services are a lifeline for millions of vulnerable Americans. Without them, many people would be forced into a long term care facility. Disabled people should be able to live in the community with their family and friends just like non-disabled people do.


Burns, Alice, et al. “Ending the Public Health Emergency for Medicaid Home- and Community-Based Services.” Kaiser Family Foundation, Kaiser Family Foundation, 19 Apr. 2023, https://www.kff.org/policy-watch/ending-the-public-health-emergency-for-medicaid-home-and-community-based-services/.

“Home- and Community-Based Services.” Centers for Medicare & Medicaid Services, United States Department of Health and Human Services, https://www.cms.gov/outreach-and-education/american-indian-alaska-native/aian/ltss-ta-center/info/hcbs.

Park, Alice. “What End of COVID-19 Public Health Emergency in U.S. Means.” Time, Time Inc., 31 Jan. 2023, https://time.com/6251520/covid-19-public-health-emergency-ends-what-changes/.

Terry, Lynne. “Advocates Push for State to Allow Paid Parent Caregivers for Children with Disabilities.” Oregon Capital Chronicle, States Newsroom, 25 Feb. 2023, https://oregoncapitalchronicle.com/2023/02/24/advocates-push-for-state-to-allow-paid-parent-caregivers-for-children-with-disabilities/.

Terry, Lynne. “Proposal on Paying Parent Caregivers of Children with Highest Disability Needs Advances.” Oregon Capital Chronicle, States Newsroom, 6 Apr. 2023, https://oregoncapitalchronicle.com/2023/04/06/proposal-on-paying-parent-caregivers-of-children-with-highest-disability-needs-moves-to-ways-and-means/.

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