Today, we celebrate a watershed moment in our nation’s history: the signing of the Americans with Disabilities Act (ADA). For 32 years, the ADA has provided vital protections for the millions of Americans who live with a disability.
I am no stranger to this issue. Nearly four decades ago, I started my career as a legal aid attorney working with the Commonwealth of Massachusetts’ Protection and Advocacy program, where I assisted people with mental health challenges transitioning from institutions to the community.
That experience had a profound impact on me, and I’ve continued to fight for disabled people at every turn of my career. In fact, one of my proudest moments as Attorney General of California was establishing the Bureau of Disability Rights at the California Department of Justice to ensure that the rights of people with disabilities are advanced. And now, as HHS Secretary, I am honored to continue that work at the federal level, and to recommit myself and the department I lead to advancing the ADA’s core aims.
Just yesterday, the HHS Office for Civil Rights (OCR) released a proposed update to the HHS regulations that implement Section 1557 of the Affordable Care Act. The proposed rule includes a number of provisions to ensure that people with disabilities have equitable access to all of the health programs and activities funded or administered by HHS.
From the classroom and the workplace, to the doctor’s office and the ballot box, our nation has made great strides over the past three decades to fulfill the ADA’s promise. But while we celebrate this progress, we know we still have work to do to make our country accessible and inclusive of everyone.
That work has been a priority of this Administration from day one, and President Biden’s executive order on advancing equity explicitly includes people with disabilities in its call for comprehensive action. The examples below are just a few of the most recent found across HHS, where we are working every day to address the health disparities of disabled people, expand home and community-based services, and more.
Today, we must continue the fight activists began so many years ago. And we must continue to build on the legacy of the ADA and push our nation to live up to its founding promise of justice, equality, and opportunity for all.
Key HHS Actions to Advance Equity and Uphold the Rights of People with Disabilities
COVID-19 Response and Recovery
Throughout the COVID-19 pandemic, HHS has worked to uphold the rights of people with disabilities and ensure access to lifesaving treatment, vaccines and PPE. For example, HHS:
- Issued guidance making clear that people with disabilities have a right to receive needed health benefits and services free from discrimination during the COVID-19 public health emergency. The guidance clarifies that federal civil rights laws continue to apply to health care providers during a public health emergency, when resources may be scarce, including those related to COVID-19 testing and vaccination, medical supplies, and medication.
- Embedded disability advisors in our COVID-19 emergency response and funded disability specialists in public health agencies and communities across the United States.
- Developed accessible resources for people with disabilities, such as a COVID-19 toolkit with specific guidance and resources, American Sign Language videos, and easy-to-read summaries to make CDC science and guidance accessible to people with intellectual disabilities.
- Launched an enhanced COVID-19 tracker that includes disability demographic data.
- Awarded nearly $100 million in grants to the disability and aging networks to help disabled people and older adults get their COVID-19 vaccines and boosters.
- Launched the national Disability Information and Access Line (DIAL), which has provided information and referral to critical community services and COVID-19 vaccines and boosters, tests, and therapeutics to over 45,000 people with disabilities.
- Helped disabled people get N-95 masks and COVID-19 tests through a partnership between the Administration for Community Living and the Health Resources and Services Administration.
- Expanded the capacity of the public health workforce to support disabled people and older adults by distributing $150 million in American Rescue Plan funds to ACL’s disability and aging networks.
- Issued guidance with the Department of Justice to inform people that long COVID can be a disability under the ADA and other federal civil rights laws that protect people with disabilities from discrimination. The guidance also shares resources for additional information and best practices.
- Issued guidance on HIPAA, COVID-19 vaccinations, and the workplace that also refers to rights under disability laws.
Preventing Discrimination and Removing Barriers to Accessing Care and Services
In addition to ensuring that disabled people have access to the programs and activities funded and operated by HHS, the department also is actively working to ensure that health care providers and facilities, pharmacies, and others who deliver health and human services to Americans understand and meet their obligations under civil rights laws. For example, HHS:
- Has taken a number of enforcement actions, in conjunction with U.S. Attorney offices, to secure corrective action and reforms in state agencies, and hospitals to ensure non-discrimination on the basis of disability. These settlements include ensuring parents with disabilities get needed reasonable modifications, effective communication, and auxiliary aids in all matters involving foster care and child custody; providing effective communication to hospital patients who are deaf or hard of hearing, including sign language interpreters during childbirth to patients who are deaf, and providing appropriate auxiliary aids and services to ensure effective communication to patients during hospitalization.
- Issued a proposed rule under Section 1557 of the Affordable Care Act, which prohibits discrimination on the basis of race, color, national origin, sex, or disability in certain health programs or activities and is one of the government’s most powerful tools to ensure nondiscriminatory access to health care. The proposed rule includes a number of provisions that would strengthen civil rights protections for people with disabilities. For example, the rule clarifies that the “integration mandate” of the Americans with Disabilities Act applies to health programs and activities that receive funding from HHS. It also describes requirements related to effective communication for individuals with disabilities, including notice requirements and the right to receive auxiliary aids and services free of charge; clarifies that non-discrimination protections apply to telehealth; and prohibits the use of discriminatory clinical algorithms in decision making, just to name a few.
- Created the CDC Disability Inclusion and Accessibility Workgroup to promote and advance the science of disability inclusion and accessibility in public health across the agency.
- Issued guidance to remind the roughly 60,000 pharmacies in the United States of the unique role pharmacies play in ensuring access to comprehensive reproductive health care services and their obligations under federal civil rights laws to ensure nondiscrimination in health care. That guidance reminds pharmacies that refusing to fill prescriptions for certain drugs – such as methotrexate prescribed for rheumatoid arthritis – can constitute discrimination on the basis of disability.
- Issued guidance, standing with transgender and gender nonconforming youth and their families—and the significant majority of expert medical associations—that unequivocally states that gender affirming care for minors, when medically appropriate and necessary, improves their physical and mental health. Gender dysphoria may, in some cases, qualify as a disability under the ADA and other federal civil rights laws.
- Took a series of enforcement actions against health care providers for people with disabilities, including those with spinal injuries, visual disabilities, and eating disorders, to secure corrective action ensuring that patients receive timely access to their health records.
- Announced new funding to establish a National Center for Equity, Disability and Intersectionality that will advance work that breaks down barriers commonly faced by disabled people from underserved communities.
- Announced two training sessions on disability access and effective communication to help healthcare providers who receive funding from the Health Resources and Services Administration meet their federal civil rights obligations. The sessions will (1) describe relevant federal disability laws, policies, and guidance in plain language and (2) share best practices to prevent discrimination based on disability and advance accessibility in healthcare programs and activities.
Expanding Access to Community Living
The Americans with Disabilities Act guarantees the rights of people with disabilities to live in the community, but people can only exercise that right if they have access to the supports they need. That’s why we are working across HHS to expand and strengthen our home and community-based services system. For example, we have:
- Launched a new “one-stop shop” website for state Medicaid agencies and stakeholders on Medicaid.gov to make available information about states’ plans to enhance, expand, and strengthen HCBS across the country using new Medicaid funding made available by the American Rescue Plan, including resources and strategies on using Section 9817 funding to help stabilize the direct care workforce and support efforts to implement the HCBS settings final rule.
- Launched the HHS-HUD Housing and Services Resource Center (HSRC) to coordinate access to community services and accessible, affordable housing to help older adults and disabled people live stably in their own homes and communities. Through the HSRC, HHS and HUD have worked together to build and strengthen partnerships among organizations and systems that provide housing resources and homelessness services, behavioral and mental health services, independent living services and other supportive services, and others who are working to help people live successfully and stably in the community. The goal is to foster collaboration and cross-sector partnerships in order to streamline access to services, better leverage resources (such as those described in the joint fact sheet released for the ADA anniversary last year), and ultimately make community living possible for more people.
- Expanded access to the Money Follows the Person (MFP) program, which supports state efforts to rebalance their systems of long-term services and supports so that individuals have the opportunity to live and receive services in the community instead of in an institution.
- For states and territories not currently participating in MFP, CMS released a funding opportunity that would ensure more people with Medicaid can transition from institutions and receive high-quality, cost-effective, person-centered services in community settings.
- For states already participating in MFP, CMS announced 100% federal funding of MFP “supplemental services” and expansion of the definition of supplemental services to include additional services that can support an individual’s transition from an institution to the community, including short-term housing and food assistance. These changes will help further address critical barriers to community living for eligible individuals, as well as increase community transition rates and the effectiveness of the MFP demonstration overall.
- Continued to work with states and stakeholders to implement the HCBS settings rule. On May 24, 2022, CMS, in partnership with ACL, released a recalibrated implementation strategy that ensures important beneficiary rights inherent in the regulatory criteria are implemented and is reflective of workforce shortages states and providers have been facing during the COVID-19 public health emergency.
Supporting Direct Care Workers and Family Caregivers
At some point in our lives, nearly all of us will need assistance with things like transportation, personal care, and managing finances, provide assistance to someone else, or both. A strong caregiver workforce – both paid professionals and families and others who provide unpaid care and support – is crucial to supporting health and wellness and to making it possible for all people to live in their own homes and communities. COVID-19 worsened long-standing shortages in the direct care workforce and exacerbated the already increasing demands on family caregivers. To being to address these issues, HHS:
- Announced new funding to establish a national resource and technical assistance center to strengthen and grow the direct care workforce.
- Delivered two reports to Congress on issues facing family caregivers and recommendations for addressing them. Developed by the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregiver Advisory Council and the Supporting Grandparents Raising Grandparents Advisory Council, these reports will form the foundation of the National Family Caregiver Strategy that will be delivered to Congress later this year. The strategy will advance a plan of action for better supporting families and other unpaid caregivers who form the backbone of our national system of long-term care.
Data and Research
Advancing health equity and effectively meeting the health needs of people with disabilities and ensuring disabled people have the opportunities to live independently and fully participate in their communities requires robust, accurate information about incidence and prevalence of disabilities, the unique ways in which health issues affect disabled people, their experiences with our nation’s health care and human services systems, and more. HHS is working to ensure that disabled people are included in the research we support and conducting studies to close knowledge gaps. For example, HHS:
- Published a report Improving Data Infrastructure for Patient-Centered Outcomes Research for People with Intellectual and Developmental Disabilities. The report describes key informant interviews and a listening session on opportunities for improving data infrastructure for research that addresses the needs of individuals with intellectual and developmental disabilities.
- Announced new funding to establish three new Rehabilitation Research and Training Centers (RRTC) focused on advancing equity for disabled people. RRTCs conduct research and serve as national resource hubs to improve rehabilitation methodology and service delivery systems; improve health and functioning; and promote employment, independent living, family support, and economic and social self-sufficiency for people with disabilities. They also provide training to improve rehabilitation services.
- Initiated development of the Dataset on Intellectual and Developmental Disabilities, a linked dataset that will enable researchers to analyze relationships among various sociodemographic information, need for home and community-based services, service utilization, service expenditures, and person-centered outcomes prior to and during the COVID-19 pandemic for people with intellectual and developmental disabilities.
- Published a report analyzing Health Insurance Coverage Among Working-Age Adults with Disabilities: 2010-2018, which used national survey data to show the large gains in coverage among working-age adults with disabilities after implementation of the Affordable Care Act. The report further revealed that the American Rescue Plan Act of 2021 provided access to zero-premium Marketplace plans for over 500,000 uninsured adults with disabilities.
- Published an environmental scan, report, and issue brief from a study on service structure and financing approaches to continuity for young adults with early psychosis. These included policy opportunities for states and local jurisdictions.
- Published a brief on child mental health and policy considerations in school and early childhood settings; ASPE analysis identified children with disabilities among the most vulnerable to having a mental health condition during COVID-19.
Expanding Access to Behavioral Health Services
Disabled people are at increased risk for behavioral health challenges, and all too often they face barriers to getting the support they need. To address this issue, HHS has:
- Supported the provision of substance use prevention and harm reduction services to people with disabilities, including, through various funding opportunities, such as: the First Responders-Comprehensive Addiction and Recovery Support Services Act Grant, the Strategic Prevention Framework for Prescription Drugs, the Substance Abuse and HIV Prevention Navigator Program for Racial/Ethnic Minorities Cooperative Agreement; and the Harm Reduction Grant Program.
- Announced new funding to create a national resource center to provide integrated and culturally competent services to people diagnosed with both intellectual and developmental disabilities and mental health disabilities, their families, and others in their support systems.
- Fostered rights protection and addressed disparities in access to behavioral health services and supports through SAMHSA’s Protection & Advocacy for Individuals with Mental Illness (PAIMI) Program. SAMHSA PAIMI grantees serve all 50 states, the District of Columbia, and five U.S. territories. From 2017 – 2021 alone, the PAIMI program protected and advocated for the rights of 50,000 adults with serious mental illness and children with serious emotional disturbances through activities to ensure the enforcement of the Constitution, as well as federal and state statutes.
- Provided training and technical assistance to integrate peers and recovery in behavioral health services and promote evidence-based care for adults with serious mental illnesses through SAMHSA-funded National Consumer and Consumer Supporter Technical Assistance Centers.
- Provided resources and technical assistance for emergency responders and officials to ensure all segments of the community are appropriately served during disaster planning and in post-disaster stages through SAMHSA’s Disaster Technical Assistance Center.
- Provided new resources to help people seeking care to understand and access protections offered under the Mental Health Parity and Addiction Equity Law for mental health and substance use disorder benefits.
- Provided essential services and supports for people with serious mental illness experiencing homelessness through SAMHSA’s Projects for Assistance in Transition from Homelessness (PATH) program.