Letter to congressional leadership urging HCBS inclusion in next COVID-19 package

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April 24, 2020

The Honorable Nancy Pelosi
Speaker of the House
United States House of Representatives
H-232, U.S. Capitol
Washington, D.C. 20515

The Honorable Kevin McCarthy
Minority Leader
United States House of Representatives
H-204, U.S. Capitol
Washington, D.C. 20515

The Honorable Mitch McConnell
Majority Leader
United States Senate
S-230, U.S. Capitol
Washington, D.C. 20510

The Honorable Charles Schumer
Minority Leader
United States Senate
S-220, U.S. Capitol
Washington, D.C. 20510

Dear Leaders McConnell and Schumer and Speaker Pelosi and Leader McCarthy:

I write as Chairman on behalf of the National Council on Disability (NCD), an independent, nonpartisan federal agency that provides advice to the President and Congress on disability policy issues, to advise that the next COVID-19 legislative package be inclusive of several critical home-and-community-based service (HCBS) system provisions that will save potentially tens of thousands of lives of people with disabilities and those who support them during the COVID-19 outbreak.

During the COVID-19 pandemic, NCD has heard from organizations representing front line direct support professionals (DSPs) and personal care attendants whose jobs are to provide people with disabilities assistance with activities of daily living– which cannot be provided at a six foot distance -- who are endangering themselves and their clients with disabilities due to insufficient protective equipment. Because the current definition of “essential workers” does not include these vital workers, they have no priority in acquiring personal protective equipment (PPE). I urge you to pursue this as a “fix” in the next COVID-19 legislative package.

In addition to the issue of designating these direct care workers as “essential,” I advise that you address their shortage and the tenuous nature of the entire system of which they are a part as a result of the COVID-19 pandemic. With more direct care workers unable to deliver critical services owing to their own illness, their family members’ illness, or their lives and careers impacted and disrupted by COVID-19 in other ways everyone is currently experiencing, the pre-existing worker shortage, high turnover rates, and low wages are culminating into a desperate cause-and-effect situation for scores of Americans with disabilities.  

Without the critical services provided by direct care workers that allow people with disabilities and seniors to remain independent and in-community, people with disabilities and seniors often end up routed to unnecessary hospital admissions or institutional placements. These settings are not only far more expensive than supporting people to live in their homes and other community settings, but during the current pandemic, hospital beds are needed to focus on COVID-19 care, and these locations (hospitals, nursing homes, assisted living facilities, group homes, and other congregate care settings) are sites of pernicious infection rates of seniors and people with disabilities.

Therefore, if the HCBS system upon which so many people with disabilities and seniors rely begins to falter, a great many people may find themselves or their loved ones not only stripped of their independence, but their lives substantially imperiled given the correlation of congregate settings to infection rates.

This advice from NCD at this time, while novel in application to COVID-19, is not at all new but rather longstanding advice to Congress across numerous administrations that “America needs a coherent and comprehensive framework for its [long-term services and supports] policies, programs, and funding” based in part on the assumption that “formal and informal caregiving must be sustained, including examination of family needs and workforce recruitment and retention challenges.”[1] It is true that these are not new challenges, but the length of time in which they have gone holistically unaddressed in national policy and investment has truly come home to roost during this current national testing. I urge you to take decisive action to save lives.

The next COVID-19 legislative package presents a critical opportunity to:

  • Designate those who assist people with disabilities with activities of daily living, like bathing, toileting, and eating, as “essential” so that they can receive priority access to emergency resources and PPE; and
  • Address an oversight of previous COVID-19 packages by including HCBS grants that will enable states to train and shore up a DSP workforce and provide overtime wages during the influx of staffing shortages caused by the pandemic.

Making these investments responds to the clear, present, and unique dangers that people with disabilities and seniors are facing during the COVID-19 pandemic that are costing them and those who support them their lives.

NCD has a long history of researching trends and needs within the nation’s long-term services and supports system and incorporating the lived experiences of people with disabilities and those who support them in our advice to Congress and the Administration. Considering our longstanding findings in these areas, I strongly encourage the inclusion of HCBS investments in the next COVID-19 legislative package. I welcome the opportunity to discuss this recommendation with you. Please do not hesitate to have your staff follow-up with the NCD staff for more information by contacting  Anne Sommers, Director of Legislative Affairs and Outreach (asommers@ncd.gov) and Joan Durocher, Director of Policy and General Counsel (jdurocher@ncd.gov).

Respectfully,

Neil Romano
Chairman

 

 

[1] National Council on Disability, The State of 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities (2005). http://www.ncd.gov/publications/2005/12152005 (Accessed April 23, 2020).