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Continuing the Fight to Fulfill the Promise of the ADA

July 26, 2023
Alison Barkoff
Acting Administrator and Assistant Secretary for Aging

Thirty-three years ago today, the Americans with Disabilities Act (ADA) was signed into law, establishing the civil right of people with disabilities to live, work, and fully participate in their communities. Rightly celebrated as a landmark victory in the disability rights movement, its passage was a long and hard-fought battle. It was won through a campaign of relentless advocacy and action by disability and civil rights organizations and leaders, champions from across federal government and within Congress, and disabled people and their families and allies from across the country. The ADA became law because everyone joined the fight. 

The ADA set expectations for equal access and established the right to community living, and it has changed our country in innumerable ways. Its passage was an important milestone in the fight for disability rights, but it was not the endpoint. More than three decades later, its promises remain unfulfilled for far too many disabled people. 

Today, we stand at an inflection point. We have an unprecedented opportunity and the momentum to build the infrastructure needed to ensure that people with disabilities can truly be included in all aspects of community life. But we also face unprecedented risk. The fragility of our current system of long-term services and supports and a workforce shortage that has reached crisis levels threatens to reverse the progress we have made. Tipping the balance in the right direction again requires everyone to join the fight. 

For many disabled people, exercising the rights protected by the ADA depends on the availability of “home and community-based services,” or HCBS, which are services and supports that assist with the daily tasks of life.

When these services and supports are available, people with disabilities can live and thrive in their communities. But the stark reality is that they are not available to too many people who need them. The result? Disabled people are forced to choose between living in institutions or forgoing the support they need to live in their own homes and communities — at the cost of their health and well-being. That cannot continue.

A shortage of the professionals who provide HCBS is one of the key reason services are not available to all who need them. HCBS programs have struggled with workforce shortages for many years, but the COVID-19 pandemic accelerated the crisis: the number of professionals shrank while the demand spiked. Today, more than three-quarters of providers nationally are turning down referrals — and half are discontinuing services altogether — because they are unable to hire and retain staff. State waitlists for Medicaid-funded HCBS, which already include an estimated 700,000 people, are growing, and people who are authorized for services often cannot get them. 

As a direct result, family caregivers are having to take on even more — and more complex — caregiving responsibilities. In addition to having a negative impact on the health and well-being of the people providing support, the increased strain on family caregivers carries a significant public cost. A recent AARP report estimates that the approximately 53 million unpaid family caregivers across the U.S. provided care valued at $600 billion in 2021. When they become overwhelmed and can no longer provide support, their loved ones often find themselves with no choice but to move to nursing homes or other congregate settings — typically at a much higher cost that is usually paid for by public programs.

Without action, this problem will only continue to worsen. The number of people with disabilities is growing, and disabled people are living longer than ever before. The population of older adults also is increasing rapidly — and more than 70% of us can expect to need assistance to remain in the community as we age. The demand for services will continue to increase. 

Bottom line: Our country will need more than one million new direct care workers by 2030 to meet projected needs. If we do not act now, we risk reversing the progress we have made toward making community living available to everyone.  

That’s why President Biden has made strengthening what he calls the “caregiving infrastructure” a top priority. He has been clear that we need to use every tool in our toolbox to address this crisis now. To that end, his Executive Order on the Care Economy directs federal agencies to increase the availability of HCBS. It also includes directives to make progress on one of today’s most urgent priorities — expanding and stabilizing the professional direct care workforce and improving support for family caregivers, which together provide the services and support that make community living possible for millions of people.

ACL is stepping up and playing a critical role in addressing these issues. Last fall, ACL established the national Direct Care Workforce Strategies Center to improve recruiting, retention, and training of the professionals who provide HCBS. Developed in partnership with other HHS agencies and the Department of Labor, the center supports partnerships between disability, aging, Medicaid, and labor/workforce agencies and stakeholders. It also will serve as a national hub of resources and best practices.

In parallel, ACL delivered the first-ever National Strategy to Support Family Caregivers, which includes nearly 350 commitments across 15 federal agencies and more than 150 actions that can be adopted by others to improve support to family caregivers. In May, ACL announced $20 million in new funding for the first major initiative to begin implementation of the strategy, and tomorrow we will swear in the new members of the advisory councils — including members of the disability community — that will continue this work. 

These issues are complicated and solving them will require action by both the government and the private sector, at the federal, state, and local levels. Ensuring solutions meet the needs of the people they are intended to support means including those people at the planning table. That’s why part of the focus for both of these initiatives is on supporting advocacy by the people receiving services, family caregivers, and direct care workers. 

Expanding and supporting the workforce that provides HCBS — both paid professionals and family caregivers — is absolutely crucial, but living up to the expectations established by the ADA will require much more. We also must improve the availability and quality of the services disabled people need — and ensure people with disabilities are able to access them. 

This is at the core of all of ACL programs. Across the country, our networks are providing services, developing and testing innovations and new approaches, conducting research to identify unmet needs and ways to meet them, connecting people to the resources available in their communities, and more. 

At the federal level, ACL is working closely with the Centers for Medicare & Medicaid Services (CMS) to improve quality and increase availability of Medicaid HCBS. ACL collaborated with CMS in their development of a proposed rule that aims to improve access to — and quality of — Medicaid services, including HCBS. ACL also has continued our active engagement in implementing the HCBS Settings Rule, which ensures that people who receive services and supports through Medicaid’s HCBS programs have full access to the benefits of community living.  

Because Medicaid is a partnership between states and the federal government, advocacy is critical at both levels to ensure that the needs of people with disabilities are reflected in policy and programs. A key element of our work has been supporting engagement by the people the HCBS Settings Rule most affects — disabled people, older adults, and their families — with state and local policymakers and agencies as changes are made to meet the rule’s requirements. Later this year, we will launch a new initiative that will expand this support for grassroots engagement by people with disabilities and older adults beyond the Settings Rule into all kinds of HCBS systems advocacy. 

Meeting the intent of the ADA also means improving our capability and capacity to serve people who face the greatest barriers to inclusion. For example, more than a third of people with intellectual and developmental disabilities (I/DD) also have mental health disabilities, and they generally have poorer outcomes than peers who have either disability alone. Last year, ACL launched a national center to improve the support available to them. Guided by people with I/DD and mental health disabilities, the center will provide resources to support effective policy development and improve services, as well as information and training to support disabled people and their families.

In addition, several ACL programs are conducting research and developing tools and training to improve the ability of our systems to reach and serve disabled people who also face barriers due to race, ethnicity, sexual orientation, gender identity, language spoken, and/or other factors.  

We also cannot overlook the fact that much of our country remains physically inaccessible to people with disabilities. Still today, disabled people are unable to join their friends for dinner at many restaurants or travel safely down many streets. Their health care often suffers because medical equipment cannot accommodate their needs. Accessible housing is scarce, particularly for people who have low income. Lack of accessible transportation leaves many people with disabilities stranded. The list goes on and on. 

ACL is taking steps to address these issues too. ACL is leading the Housing and Services Resource Center, a partnership between the U.S. Departments of Housing and Urban Development and Health and Human Services, to coordinate and expand access to affordable, accessible housing and the critical services that make community living possible. We also are building on our long-standing partnership with the Federal Transit Administration to make accessible transportation more available. And our networks are working with state and local governments, businesses, and employers to help them meet their responsibilities under the ADA. But this work is only part of the solution. Here again, advocacy — by all of us, at all levels — remains critical. 

We owe a debt of gratitude to the disability rights pioneers who fought for the ADA and other groundbreaking civil rights laws that paved the way for it — people like Judy Heumann, who passed away this year after a lifetime of advocacy and leadership. We must honor their legacy by continuing their work.

That’s why ACL invests in educating disabled people and their families on how to advocate for change in their own communities. In addition to the grassroots advocacy work mentioned above, ACL programs are developing the next generation of disability leaders across the country. For example, ACL funds the Self Advocacy Resource and Technical Assistance Center, a national center to strengthen the self-advocacy movement and support self-advocacy organizations, and Partners in Policymaking, a program that gives people with I/DD and their families the tools to advocate for themselves and for changes in the systems that support them. In addition, a centerpiece of the new Center for Disability, Equity, and Intersectionality is to support young disabled leaders. 

As we mark the anniversary of the ADA, ACL will continue to work alongside people with disabilities, our networks, and partners across the country to breathe life into its powerful provisions and make them a reality for all. We are committed to this work, and we are proud of the difference we are making. But we also recognize the enormity of what must be done and the limits of what we can achieve alone. Delivering on the promise of the ADA will require a concerted, committed effort from all of us and continued advocacy, particularly by disabled people, whose stories of their own experiences are the most effective illustration of the impact of the ADA. We are facing an urgent need for bold collective action, and every one of us has a role to play to ensure that the ADA’s promise of inclusion in all aspects of community life is a reality for all. 

Learn more about the ADA and its impact:

From the White House: In his proclamation marking the ADA anniversary, President Biden calls for action to expand access to HCBS and accessible transportation, improve employment opportunities, protect voting rights, and more. 

ACL’s 2023 ADA anniversary round-up: We’re compiling blogs, statements, resources, and other information being shared by federal partners to celebrate Disability Pride Month and to mark the anniversary of the ADA. ACL and the HHS Office for Civil Rights (OCR) work closely together to defend the rights of people with disabilities and ensure equal access to all facets of life, throughout life. We came together to create this website to tell the story of how the ADA came to be, showcase some of the progress we have made as a country toward achieving its promise, and illustrate a little bit of the work being done by ACL and OCR, as well as other partners within HHS and across government. 

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.

Last modified on 09/06/2023

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