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NCD HCBS Letter to Congressional Leaders

Friday, July 23, 2021

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

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

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

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

I write as Chairman, on behalf of the National Council on Disability (NCD), to express support for the $400 billion dollar investment in Medicaid Home and Community Based Services (HCBS) that is included in the Build Back Better Agenda. While the 10% Federal Medicaid Assistance Percentages (FMAP) bump included in the American Rescue Plan Act (P.L 117-2) is a critical step to help strengthen and expand access to HCBS, one year of funding will not adequately address the crisis that has been in the making for decades and exacerbated by the COVID-19 pandemic.

NCD is a non-partisan, independent federal agency charged with advising the President, Congress, and the Administration on matters that affect people with disabilities. Our advice to you and other federal policymakers is based upon objective and thorough research and analysis. 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.

NCD’s longstanding advice to Congress across numerous administrations has been 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 The challenge is not new, but the length of time in which it has gone holistically unaddressed in national policy and investment has been brought to light during the pandemic and must be addressed now.

Even prior to the pandemic, the long history of inadequate funding for HCBS has led to  severe shortages of direct support workers that have resulted in crucial gaps in service availability, lengthy waiting lists, service line closures, and additional obstacles to achieving a high quality of life for persons with disabilities and direct care workers. There are currently over 800,000 people with disabilities2 on waiting lists for HCBS while others remain in institutions because they do not have qualified and trained direct care workers to support them in the setting of their choice.

The Americans with Disabilities Act requires state and local governments to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities”3 and the subsequent decision in Olmstead v. L.C found that unnecessary segregation of people with disabilities violates the Americans with Disabilities Act (ADA).4 Yet, now 31 years after the passage of the Americans with Disabilities Act the promise of inclusion cannot be realized for a significant number of our community without adequate funding for HCBS. Furthermore, research has shown that the quality of life for people with disabilities is significantly improved when they live in the community. In 2014, NCD examined the available research to determine the impact the size and type of community settings have on individual and service-related outcomes.5  One of the key findings of the literature review was that while the “research base [was] small, the data…document clear trends in increased choice, satisfaction, and personal outcome achievement associated with homes and residential settings of smaller size.” Overall, the report concluded “that smaller settings provide the greatest opportunities for positive individual outcomes.”

The initially proposed $400 billion investment in HCBS in the Build Back Better Agenda is crucial to realizing the promise of the Americans with Disabilities Act. The investment will begin to build a sustainable infrastructure as states recover from the COVID-19 pandemic for HCBS by both increasing access to HCBS for persons with disabilities and starting to address the direct worker crisis.

Thank you for your attention to this important matter. Please do not hesitate to contact me with any related questions or to discuss further as necessary.

Most Respectfully,

Andrés J. Gallegos


cc:      The Honorable Kimberly Knackstedt, Director of Disability Policy, Domestic Policy Council at the White House

1 National Council on Disability. The State of 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities. (2005), (Accessed July, 21, 2021).

2 Kaiser Family Foundation. Key State Policy Choices About Medicaid Home and Community-Based Services. (2020),… (Accessed July 21, 2021).

3 28 C.F.R. § 35.130(d).

4 Olmstead v. L. C., 527 U.S. 581 (1999).

5 National Council on Disability. Home and Community-Based Services: Creating Systems for Success at Home, at Work and in the Community. (2014), </assets/uploads/docs/hcbs-report-final.pdf> (Accessed July 21, 2021).

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