NCD letter to President Biden regarding COVID-19 legislation

President Joseph R. Biden, Jr.
The White House
1600 Pennsylvania Ave. NW
Washington, DC 20500

Dear Mr. President:

Without exaggeration, the lives of people with disabilities hang in the balance because their needs have not been addressed in any COVID–19 relief legislation to date. I write as your newly designated Chairman of the National Council on Disability (NCD), an independent nonpartisan federal agency, to renew our prior advice1 for the inclusion of provisions and funding in the next COVID–19 legislative package to ensure access to critical services now, during the pandemic, and later, once the pandemic ends.

NCD’s advice to you, Mr. President, and to federal policymakers on matters that affect people with disabilities is based upon objective research and analysis. In consideration of our longstanding research findings and our ongoing communication with community experts in these areas during the pandemic, NCD strongly calls for provisions in the next COVID-19 legislative package to:

• dedicate Medicaid funds for home-and community-based services (HCBS);
• provide long-term funding and reauthorization of the Money Follows the Person (MFP) program beyond the recent three-year reauthorization and funding in the Consolidated Appropriations Act on December 28, 2020;
• assist people with disabilities to transition out of congregate settings hardest hit by the pandemic into systems of home-and community-based settings and services that have been decimated during the pandemic;
• assist families who must stay home from work to provide care for adult children with disabilities; and
• provide for personal protective equipment (PPE) for family and professional caregivers of people with disabilities;

The pandemic has had a devastating toll on persons with disabilities. People with disabilities and older adults are more likely to have underlying diseases and conditions that may make them vulnerable to severe infection and death from COVID-19, and in some instances, they may also be at higher risk of infection because of the necessity of daily close contact with service providers. Yet, no COVID-19 relief legislation has included targeted provision for the needs of the disability community.

These well-documented needs include dedicated funding of HCBS, which is essential for people with disabilities and older adults to stay in their own homes and communities as opposed to receiving services in congregate settings that have been the settings of over 100,000 COVID-19 deaths since the end of November 2020.2 The fragile and underfunded HCBS infrastructure that existed prior to the pandemic has been greatly compromised as the result of pandemic safety protocols that have impacted the ability to continue business operations, and by state budget cuts to Medicaid for optional services like HCBS. Many organizations providing the services of direct support professionals (DSPs) were already experiencing turnover rates above 50% before the pandemic,3 and as early as two months into the pandemic last year, a survey of nearly 700 community-based intellectual and developmental disability (IDD) service providers across all 50 states, the District of Columbia, and Guam and Puerto Rico showed that 68 percent of those providers had already closed one or more lines of service due to the pandemic, resulting in an average loss of 32% of revenue.4 A similar survey a few months later of just under 200 IDD service providers found that 77% had shut down or discontinued programs on account of higher costs and lower utilization during the pandemic, and 16% do not expect to reopen.5 This absolutely vital service system is in an extremely fragile state and requires Federal Government action and investment without delay.

The next COVID-19 relief bill must also include long-term funding and reauthorization of the Money Follows the Person (MFP) program beyond the recent three-year reauthorization and funding in the Consolidated Appropriations Act on December 28, 2020. MFP is an optional program for states and individuals which provides enhanced funding to states to assist transitioning people with disabilities into their homes and communities from institutional settings and was passed in 2005 with strong bipartisan backing due to its proven and substantial cost-savings and positive outcomes versus institutional settings. Now more than ever, as states struggle with budget crises, it is imperative that Congress pursue permanence for MFP as a federal program so that states can budget plan with confidence.

As many HCBS providers have been unable to provide services during the pandemic as they did before the pandemic, many families have had no choice but to provide the services to their loved ones themselves, often significantly impacting or altogether preventing their ability to keep their own normal work hours. Such family members often work in jobs without the availability of paid family leave or sick leave, which means they are left with an untenable choice – neglect the very important daily needs of their loved one with a disability, imperiling those individuals with disabilities’ physical and mental well-being, or imperil their families’ financial stability. This is not a choice that families should have to make. Congress should authorize funds appropriated to support HCBS to provide family members in those positions benefits as sick leave or paid family leave.   

Finally, NCD continues to hear from agency stakeholders representing DSPs and personal care attendants whose jobs are to provide people with disabilities assistance with activities of daily living – many of which are personal and intimate and cannot be provided at a six-foot distance – who continue to endanger themselves and their clients with disabilities due to insufficient access to PPE. DSPs need to be recognized as front-line employees and their needs and safety must be addressed and prioritized with the same care and rigor that other health care workers’ concerns have received in prior COVID-19 relief bills. NCD urges you to pursue DSPs’ access to PPE as a correction to what has been overlooked in all prior COVID-19 relief bills.

Without investment into HCBS and related needs in the next COVID-19 relief bill, even more people with disabilities and older adults will face risk of requiring the same services in congregate long-term care facilities, where COVID-19 infections and deaths are extremely high; more family members who are trying to juggle being home from work to care for adults with disabilities who are not presently receiving critical services or are receiving reduced services will flounder without paid leave; and more DSPs who continue to provide services and people with disabilities receiving them who have insufficient access to PPE will continue to spread the virus, suffer infections, and in many instances, die. That should not be allowed to happen.

The needs of persons with disabilities during the pandemic cannot be overlooked or ignored any longer. Respectfully, we urge you to address their needs appropriately and thoroughly in the next round of COVID-19 relief legislation.

NCD greatly values the opportunity to assist you and members of your Administration on this matter.

Most Respectfully,

Andrés J. Gallegos
Chairman

 

Cc:     Sonya Bernstein, COVID Senior Policy Advisor

Eduardo Cisneros, COVID Intergovernmental Affairs Director

Osaremen Okolo, COVID Policy Advisor

Brian Deese, Director, National Economic Council

Kim Knackstedt, Director of Disability Policy, Domestic Policy Council

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1 National Council on Disability, Letter to policymakers on next COVID-19 bill (January 12, 2021). Available at: https://ncd.gov/publications/2021/ncd-letter-policymakers-next-covid-19-bill. National Council on Disability, Letter from Chairman Romano to congressional leadership urging HCBS inclusion in next COVID-19 package (April 24, 2020). Available at: https://ncd.gov/publications/2020/letter-congressional-leaders-hcbs-inclusion-next-covid-19-package.

2 Priya Chidambaram, Rachel Garfield, Tricia Neuman, “COVID-19 Has Claimed the Lives of 100,000 Long-Term Care Residents and Staff,” Kaiser Family Foundation Policy Watch (November 25, 2020). Available at: https://www.kff.org/policy-watch/covid-19-has-claimed-the-lives-of-100000-long-term-care-residents-and-staff/.  

3 National Core Indicators. (2019). National Core Indicators 2018 Staff Stability Survey Report. Available at: https://www.nationalcoreindicators.org/resources/staffstability-survey/.

4 Avalere Health, “Impact of COVID-19 on Organizations Serving Individuals with Intellectual and Developmental Disabilities.” Available at: https://www.ancor.org/sites/default/files/impact_of_covid-19_on_organizations_serving_individuals_with_idd.pdf.

5 Michelle Diament, “COVID-19 may shut many disability programs for good,” Disability Scoop (August 24, 2020). Available at: https://www.disabilityscoop.com/2020/08/24/covid-19-may-shut-many-disability-programs-for-good/28795/.