NAHC to Congress: Big Investment in HCBS is Needed Now

The National Association for Home Care & Hospice has joined a large group of likeminded organizations in urging leaders in both houses of Congress and both parties to ensure that Medicaid Home and Community Based Services (HCBS) remain part of any package that moves forward. A large investment is essential for building a sustainable HCBS infrastructure that can begin to address the magnitude of need in our communities, both increasing access to Medicaid HCBS and addressing the direct care workforce crisis–creating more direct care jobs to support people with disabilities and aging adults, and making those jobs better.

To address the long-standing inequities the pandemic exposed and exacerbated, this investment is critical to fortify a workforce that must continue to expand to meet a rapidly increasing level of need. The HCBS workforce provides vital services, and yet these workers– who are primarily women of color–have been devalued and underpaid for decades, leading to severe staff shortages that can result in crucial gaps in service availability, lengthy waiting lists, service line closures, and additional obstacles to achieving a high quality of life for workers and recipients alike.

Due in large part to a long history of inadequate funding at the federal level, the system itself is not serving everyone who needs HCBS, even though most people far prefer to remain in their homes as they age, and research has shown that quality of life is significantly improved when individuals are able to live in the community. Further, people with disabilities of all ages have a legal right to receive services and supports in the most integrated setting, regardless of the source of payment for services. Yet, 31 years after the passage of the Americans with Disabilities Act, over 800,000 people with disabilities are currently on waiting lists for the Medicaid-funded services needed to make that possible, and many more are entering institutions against their wishes because they do not have qualified and trained direct care staff to support them in the setting of their choice. These waiting lists leave people with disabilities, aging adults and their families waiting years and even decades for services. The investments in the Build Back Better Agenda are crucial to reach this as yet unrealized goal of the Americans with Disabilities Act.

When older adults who want to age in place and people with disabilities who need support to work, live independently, and be a part of their communities are left waiting, the responsibility for care and support often falls on unpaid family caregivers, who also need financial assistance. The costs of this inadequate system fall disproportionately on people of color with limited income and wealth. The workforce and earnings losses related to unpaid family caregiving are significant and well-documented.

NAHC urges Congress to continue to include and prioritize the large investment in the infrastructure of Medicaid HCBS, and the workforce that provides them, as lawmakers negotiate any package moving forward.