Performing the duties of ACL Administrator and Assistant Secretary for Aging
Today, we mark the 25th anniversary of the Supreme Court ruling in Olmstead v L.C. This historic decision affirmed the value of the lives and contributions of people with disabilities, recognized the importance of participation in the community for everyone, and heralded a change in the way our country approaches providing supports to disabled people of all ages. It has transformed the lives of countless people with disabilities.
Anniversaries are a time to celebrate what we’ve achieved and to recommit to addressing the unfinished business. It’s also a time to recognize the people who got us here. That means today is, above all else, a day to honor the courage of Lois Curtis and Elaine Wilson – the two brave women who were plaintiffs in the Olmstead case – and the dedication and vision of Sue Jamieson, the attorney who filed the lawsuit on their behalf.
As a fellow Georgian, I was lucky enough to see the life that Lois led after leaving Georgia Regional Hospital – becoming a renowned artist and beloved community member – and to work with Sue as she dedicated her career to making the promise of Olmstead a reality.
On Thursday, ACL joined our partners from the Department of Justice and the HHS Office for Civil Rights to host an event to commemorate the anniversary with a series of conversations about “bringing Olmstead to life.” We heard from federal leaders about the work being done, and from Neera Tanden, domestic policy advisor to the President, about the Administration’s commitment to improving opportunities for people with disabilities. Most important, we heard from people with disabilities and their families about what Olmstead has meant for them and what work we still have ahead.
We have a lot to celebrate. Over the last 25 years, we have changed expectations about what it means to be disabled. Community living is increasingly the rule, rather than the exception. People with disabilities are now our classmates, co-workers, and neighbors. This has only happened because of strong advocacy by disabled people, families, advocates, dedicated civil servants, and our partners in the private sector.
I have been advocating for the full inclusion of people with disabilities for most of my life and have been involved in Olmstead enforcement activities across the country throughout my career. I have seen first-hand the changes in the lives of people when they are given the opportunity – and the supports they need – to live the lives they want in the community. And I have seen how much richer our communities are when everyone is part of them.
We now have an entire generation that was born since the Olmstead decision; a generation that has always had the right to live, work and participate in their community. But rights are not always realities. Twenty-five years after the Supreme Court’s ruling, there are still far too many people who could – and want to – live in the community, but who instead are living in institutional settings because of a lack of access to the home and community-based services they need in order to do so.
We cannot rest until Olmstead is a reality for all.
That takes a lot of hard work. At Thursday’s event, we discussed some of the core elements necessary to move us closer to delivering on the promise of Olmstead. For example, we must make sure states and other covered entities know their responsibilities through policy and regulations. That’s why we were so excited for the release of the updated HHS regulations implementing section 504 of the Rehabilitation Act last month. The updated section 504 rule creates one of the most powerful tools we have ever had to combat disability discrimination in health care and human services, and it includes important provisions clarifying the obligation to provide services in the most integrated setting appropriate to the needs of the person receiving them.
Enforcement is critical when those responsibilities are not met. On Thursday, DOJ and OCR shared several examples of their work to uphold the rights of people with disabilities. OCR talked about the agreement reached with the State of Iowa on behalf of Garrett Frey to put in place the supports he needs to continue living in his own home – and Garrett also joined us to share the impact of that agreement on his life. DOJ shared their two recent letters finding states are violating the ADA and Olmstead – one finding that Utah is unnecessarily segregating people with intellectual and developmental disabilities during the day, instead of helping them find work and spend their days in their communities, and one finding that Missouri is unnecessarily segregating adults with mental health disabilities in nursing facilities instead of providing them supports in the community.
Another crucial component of bringing Olmstead to life is ensuring that we include people with disabilities in decisions about them and the services and supports they need to live in the community. We need their input to make sure programs and services meet their needs and preferences – no voices are more important than theirs. “Nothing about us without us” must always be a core principle.
Finally, the rights affirmed by Olmstead can only be exercised if we have a robust infrastructure to support community living, which includes home and community-based services; affordable, accessible housing; employment opportunities; behavioral health supports; accessible transportation and more.
Building that infrastructure requires partnerships and coordination – across the federal government, with states and communities, and between the public and private sectors. Big problems cannot be solved by one agency or even one department. That’s why our charge – since the first day of the Biden-Harris Administration – has been to build these collaborations to multiply our impact and make lasting change.
For example, one of the biggest problems we face is the direct care workforce crisis, which threatens to reverse the gains we have made in community living over the last several decades. Low wages, lack of benefits, limited opportunities for career growth, and other factors created a long-standing shortage, which became a dire crisis during the COVID-19 pandemic. Today, more than three-quarters of service providers are declining referrals, and more than half have cut services. As a result, people cannot get the services they need to live in the community. This is a huge problem that cuts across federal departments, and it affects every state, thousands of service providers, and millions of people who need services.
That’s why ACL, in partnership with the Department of Labor, the Centers for Medicare and Medicaid Services (CMS), and the HHS Office of the Assistant Secretary for Planning and Evaluation, launched the Direct Care Workforce Strategies Center. The Strategies Center provides support and helps build partnerships across state agencies, providers, workers, service participants, and disability, aging and labor stakeholders to improve the recruitment, retention, training, and development of direct care professionals.
Similarly, community living simply is not possible without access to affordable, accessible housing. Many people live in (or are at risk of entering) institutions primarily because of housing barriers. That’s why ACL created the Housing and Services Resource Center (HSRC) with the Department of Housing and Urban Development and other HHS agencies, including CMS and the Substance Abuse and Mental Health Services Administration (SAMSHA). The HSRC is critical piece of our federally coordinated approach to improving access to affordable, accessible housing and the critical services that make community living possible.
We’ve also launched a partnership with SAMHSA to improve behavioral health supports to people who have both mental health disabilities and intellectual or cognitive disabilities, developmental disabilities, or brain injuries.
In addition to leveraging all of the tools in our federal toolbox to address some of the biggest challenges to integration and true inclusion, we are making sure they are informed by people with disabilities. Each of the initiatives above are operated in partnership with people with disabilities and disability advocacy organizations. In addition, we have developed partnerships with CMS to ensure that the voices of disabled people and older adults inform the development and implementation of policies that affect them. This includes informing one of the most consequential rules for community living – the new Medicaid Access Rule, which will expand access to and improve the quality of home and community-based services and strengthen the direct care workforce that provides them.
(You can hear more about these partnerships and others in the last panel discussion in Thursday’s event. Leaders from HUD, the Department of Labor, and SAMHSA talked about how federal agencies are partnering – with each other and with states – to address several the lack of affordable housing, the stubbornly high disability employment rate, and the lack of community-based behavioral health services.)
As we celebrate the 25 years of progress since the Olmstead decision and dedicate ourselves to the work still to be done, I want to recognize the incredible force that is the disability community. Your commitment to tearing down every barrier to inclusion is incredible.
As I look ahead, I am optimistic. 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. We know what it takes to support people well in their communities, and we are finally seeing meaningful efforts to make services more available. We have powerful new regulations to shape service systems and prevent discrimination. And we have strong partnerships among federal agencies, states, local governments, disability advocates, and disabled people nationwide. I know that we can – and will – continue our work to bring OImstead to life, and that we will not stop until “all” truly means “all.”