NAHC and a group of likeminded organizations have written to leaders of Congress, urging them to make a large permanent investment in home and community-based services (HCBS). The American Rescue Plan Act funding allowed states to provide hazard pay to the direct care workforce and maintain access to vital HCBS that have enabled people with disabilities and older adults to remain living safely in their own homes during the pandemic.
However, those rescue funds are temporary and have stopped accruing. Without a large permanent investment in HCBS, the direct care workforce crisis will worsen and HCBS access will decrease. Timely investment is needed to provide greater sustainability for states, individuals who rely on HCBS, their family caregivers, and the paid workforce providing these critical services.
While the House of Representatives passed a $150 billion investment in HCBS last year, the Senate has not yet done so. The Senate should pass the $150 billion HCBS investment as soon as possible. This investment is essential for building a sustainable HCBS infrastructure that can begin to address the magnitude of need in our communities. This investment will both increase access to Medicaid HCBS and create more high-quality direct care jobs to support the people who do this work as well as people with disabilities of all ages and their families. HCBS are also more cost effective for states and the federal government than institutional care, making this investment an all-around win for individuals, families, workers, and state and federal governments.
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. Over 90% of people with disabilities and aging adults living in the community receive unpaid support. The workforce and earnings losses related to unpaid family caregiving are significant and well-documented. The costs of this inadequate system fall disproportionately on people of color with limited income and wealth. For example, family caregivers spend on average 26% of their annual income on caregiving expenses, but the share of income African American/Black and Hispanic/Latino family caregivers report spending is 34% and 47%, respectively.
To address the long-standing inequities the pandemic exposed and exacerbated, this investment is critical to fortify a workforce that must 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 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.
This investment is also necessary to help people who are in nursing facilities and other institutions return to the community. Many people are in institutions who do not need to be because persistent underfunding and bias have created an inadequate HCBS infrastructure to meet the demand. The HCBS legislation passed by the House would directly address this issue by making the widely successful Money Follows the Person program permanent. It would also help married individuals who rely on Medicaid to remain living at home with their spouse by permanently extending the federal spousal impoverishment protections to HCBS.
Investing in home-based care has strong bipartisan support. An April 2022 survey of over 1200 likely voters shows that affordable long-term care for seniors and people with disabilities is the most popular provision in the investment package with support from 87% of all respondents and 85% of Republicans. A survey last year of 1,400 voters age 50 and older found that 87% supported increasing resources for in-home care, including 82% of Republicans, and another survey of 800 people age 18 and older found that 89% of Americans support an increased public investment in affordable home care services.