by Alison Barkoff, Acting Administrator and Assistant Secretary for Aging
On July 26, 1990, the Americans with Disabilities Act (ADA) was signed into law, establishing a national expectation of accessibility, inclusion and full participation – and creating a promise of justice and equity – for disabled people of all ages. The ADA makes clear that people with disabilities have the same rights as people without disabilities to live, work, and participate in their communities.
The principles of integration and inclusion enumerated in the ADA are at the heart of everything we do at ACL. They are embedded in our culture and reflected in our staff, which includes many people with a wide variety of disabilities (and many more with other personal connections to the disability community). Every day, our team is working to realize the vision the ADA established.
ACL’s programs provide critical community services and supports to people with disabilities and older adults; work to improve the capability and capacity of communities to meet the diverse needs of disabled people; support families and caregivers; fund disability and rehabilitation research and knowledge translation; and more. ACL’s programs – and the disability and aging networks that operate them in communities across the country – are making it possible for millions of people to live self-determined lives in their own communities.
However, far too many people who can and want to live in the community remain in institutions, and others are at risk of being forced into institutions despite wanting to stay in their own homes and communities. That’s why a critical focus for us at ACL is helping disabled people of all ages move out of nursing homes and other institutions and avoid entering them in the first place.
In communities across the country, ACL’s networks are working on multiple fronts to help people with disabilities exercise their right to live where they want. Ensuring that residents of facilities are aware of their options, providing legal assistance, helping people access the home and community-based services they need to live independently, and helping to arrange for housing, furniture, and basic necessities to get started in a home in the community are just a few of the ways centers for independent living, state protection and advocacy systems, aging and disability resource centers, area agencies on aging, long-term care ombudsman programs, and other programs funded by ACL are working to help people move to the community if they want to.
We also are working to help people avoid entering nursing homes and other institutions in the first place. ACL’s networks are forming partnerships with discharge planners at hospitals to connect people with the services and supports they need to return home following acute stays, instead of being discharged to a nursing home or rehab facility, where short-term stays too often become permanent. Our networks are also actively reaching out to, and finding solutions for, people who live in the community but who are at risk of institutionalization due to unmet needs.
At the federal level, ACL also is forging partnerships to support diversion and transition efforts. Over the past decade, ACL has worked closely with the Centers for Medicare &Medicaid Services (CMS) and the Substance Abuse and Mental Health Services Administration (SAMHSA) to promote transitions from long-term care facilities to the community. ACL and our networks also collaborate with HHS’ Office for Civil Rights and the Department of Justice’s Civil Rights Division in their efforts to enforce the right to community living.
ACL and our networks have played a key role in implementing the Money Follows the Person, or MFP, program, which has helped more than 107,000 Medicaid beneficiaries move out of institutions and into homes in the community with the services and supports they need. MFP has grown since it began in 2008 and now operates in most states. ACL works with our network of over 20,000 community-based organizations to make sure that people eligible for MFP know about the program and have the support they need to participate in it. We’re working with CMS to strengthen partnerships and collaboration between state agencies implementing MFP and ACL’s disability and aging networks.
ACL also is working with partners across HHS and the federal government to address one of the greatest barriers to community living – a lack of affordable, accessible housing. There are only 37 affordable and available homes for every 100 extremely low-income renter households nationwide. The situation is even worse for people with disabilities, because under one percent of the U.S. housing stock is wheelchair-accessible, and less than five percent can accommodate individuals with moderate mobility disabilities. For this reason, one of my first calls when I arrived at ACL was to the Department of Housing and Urban Development (HUD) to explore ways we could partner.
Over the past 18 months, ACL has strengthened connections between HUD and HHS and with our networks. Last year, we launched the Housing and Services Resources Center, a joint HUD-HHS initiative to foster collaboration and cross-sector partnerships at the federal, state and local levels in order to streamline access to services, better leverage resources, and ultimately make community living possible for more people. Our goals are to improve the ability of our networks to connect people transitioning from institutions with housing in the community, help people experiencing homelessness – which includes a disproportionate number of people with disabilities – find stable housing, and connect older adults and disabled people to the services and supports they need to live safely and securely in homes in the community.
A third way ACL is supporting transitions and diversions is by strengthening the direct care workforce – the paid professionals who provide the assistance with daily tasks of life that many people with disabilities depend on to live independently. There has been a shortage of direct care workers for many years. Low pay, lack of benefits, and lack of opportunities for advancement have led to a turnover rate of almost 50%, which affects both the quality of and access to services. The COVID-19 pandemic turned this long-standing problem into a national crisis. Due to a lack of direct care workers, nearly three-quarters of community service providers report that they are declining new client referrals, and more than half have had to cut services. This crisis is forcing people into, or causing them to remain in, institutions and putting at risk the health and safety of people who live in the community.
ACL is working with partners across all levels of government to lean into this crisis and find new ways to respond. Later this year, we will award a grant to establish a national technical assistance center to serve as a resource hub to support local, state and federal governments, and private industry in recruiting, retaining and training direct care workers.
The examples mentioned above are just a few of the many ways ACL is working to advance the ADA’s promise of community living for all people with disabilities, regardless of level of support needed, type of disability or age. Although we still have far to go, over the last 32 years, several generations have grown up, or grown older, with increasing opportunities to live and participate in all aspects of community life, thanks in large part to the ADA. As we celebrate this historic day in our country’s history, I hope you will join ACL in protecting, building upon, and advancing the ADA and its vision of true inclusion and equity for all disabled people.
To learn more about the Americans with Disabilities Act and its impact visit:
From the White House: In his proclamation celebrating the ADA anniversary, President Biden affirms the Biden-Harris Administration’s “…commitment to achieving the ADA’s full promise of advancing disability equity, dignity, access, and inclusion,” and this White House fact sheet captures some of the steps taken just in the last year last year.
ACL’s 2022 ADA Anniversary page: We have compiled information and resources being shared to celebrate the 32nd anniversary. On this page, you’ll find links to celebration events, statements by leaders across federal government, and more.
The ADA National Network: Funded by ACL’s National Institute on Disability, Independent Living, and Rehabilitation Research, the ADA National Network (ADANN) has provided advocacy, technical assistance education and information to support and advance of the tenets of the ADA. The ADANN reach is broad, touching disabled people and their families, local governments, community-based services providers, schools, and businesses of all sizes. They’ve created great resources for celebrating the anniversary and impact of the ADA.