By Alison Barkoff, Acting Administrator and Assistant Secretary for Aging
Each March, Developmental Disabilities Awareness Month offers us a chance to lift up the many ways people with DD make our communities stronger and showcase the hard work of self-advocates and the DD network across the country to advance the civil rights of people with DD. DD Awareness Month also gives us the chance to raise awareness of the remaining barriers to self-determination and inclusion for people with DD, and more importantly, what we need to do to remove them.
Those barriers have been starkly visible during the COVID-19 pandemic. This past year has brought unprecedented challenges for people with DD, their families, and the many professionals and volunteers who provide services and support.
Throughout the pandemic, ACL and our partners in the disability community have advocated for – and amplified the voices of – people with DD to help address those challenges. ACL has been working closely with our federal partners at the HHS Office for Civil Rights (OCR), Centers for Disease Control (CDC), Centers for Medicare & Medicaid Services (CMS), the Federal Emergency Management Agency (FEMA) and others to ensure that the critical needs of people with disabilities are included in the federal response. The ACL-funded DD network, including Protection & Advocacy agencies (P&As), State Councils for Developmental Disabilities, and University Centers for Excellence in Developmental Disabilities (UCEDDs), have been advocating at the state and local levels on a range of issues impacting people with DD and supporting people in addressing the challenges created by the pandemic. You can find examples of that work on ACL’s COVID-19 webpage, where we have been sharing resources, lessons learned and new information as it becomes available.
This last year has been incredibly hard. But as we celebrate DD Awareness Month, I want to recognize the difference we have made by working together:
Medical rationing: ACL has worked closely with HHS OCR to ensure that states and hospitals do not exclude or deprioritize people with disabilities, including people with DD, from accessing medical treatment in violation of federal disability rights laws. P&As across the country have worked with self-advocates, like Matthew Foster and Ivanova Smith, to challenge their states’ plans that deprioritized people with DD. Advocacy by the DD networks and self-advocates not only has had an impact in the communities where complaints have been filed, but also has created a ripple effect across the country, leading many states and hospitals to work with disability advocates to make changes to ensure equal access to lifesaving care for people with disabilities.
Visitation: We have worked together to ensure that people with disabilities, including DD, who are hospitalized have access to the supports they need to have equal access to care, even when hospitals have policies limiting visitors. For example, HHS OCR recently resolved three complaints with Medstar Health, including one filed by the P&A in DC, to ensure that people with disabilities are allowed access to the people who assist them in communicating and making decisions while they are in the hospital. Self-advocacy organizations have played an important role in making sure that people with DD know their rights to have a supporter with them, including through plain language materials like this fact sheet from Green Mountain Self Advocates and the Autistic Self-Advocacy Network.
We also have worked closely with colleagues at CMS on guidance about visitation for people live in congregate settings, many of whom have been cut off from family and friends during the pandemic. Our collaboration led to updated guidance on visitation in nursing homes, which was issued on March 10, and similar guidance for visitation in intermediate care facilities for individuals with intellectual disabilities and psychiatric residential treatment facilities released last month. This guidance not only includes best practices about how visitation can safely occur, but also explains when in-person supports are legally required by disability rights laws and recognizes that P&As and long-term care ombudsmen are not “visitors” but have legal rights to access.
Transition: Of course, we are continuing our work to support people with disabilities who want to transition from congregate settings to the community. That more than 40% of deaths to date have been in congregate settings like nursing homes has made our work more urgent now than ever. We are working with CMS to encourage states to leverage programs like the Money Follows the Person program. The program, which was recently reauthorized by Congress, helps people who want to move out of institutions into the community. We also are working to support all of our networks (the DD networks and beyond) who assist with transitioning people to the community.
Vaccine access: People with DD face significant risk of death from COVID-19. In fact, a recent study found that intellectual disability is the greatest risk factor after old age. Therefore, ensuring people with disabilities, particularly DD, have access to vaccines has been a top priority for ACL and the disability community.
At ACL, we have been working closely with our federal partners, including the CDC and FEMA, to address the barriers that people with disabilities are facing in accessing the COVID-19 vaccine. CDC has issued several fact sheets, and FEMA recently released an accessibility checklist for vaccination sites. We also have been working with ACL’s networks to identify ways they are collaborating with state and local public health authorities to address access barriers and sharing those solutions broadly to help bring them to scale across the country.
Our networks, together with self-advocates and families, have been advocating at the state level to ensure that people with disabilities, particularly people with DD, are prioritized in accessing the vaccine. It was a grassroots campaign led by self-advocates and families that led the governor of Georgia to expand the state’s vaccine prioritization criteria to include many people with disabilities. Heidi Moore, a long-time leader in Georgia’s Developmental Disabilities Council, was at the forefront of the successful campaign in Georgia. (Heidi’s son Jacob is at high risk of serious illness due to COVID-19 because he has Down syndrome, autism, and long-term effects of cancer treatment.) A similar grassroots campaign led by disability advocates, including the California P&A, led to people with disabilities being prioritized there too. And our networks have created resources to support that advocacy, such as this FAQ vaccine distribution considerations for the disability community created by the Association of University Centers on Disability (AUCD). These are a few of the many examples from across the country.
In addition, ACL’s Center for Dignity in Healthcare for People with Disabilities has created a dashboard tracking the prioritization of people with disabilities by each state. Updated weekly, this dashboard is a crucial resource for people with disabilities to keep updated on when they are eligible to receive a vaccine.
Accessible information: Throughout March, we’ll also be highlighting materials developed by our grantees and partners to provide accurate and up-to-date information about COVID-19 in formats that are accessible to all. We’ll share their work on our Facebook and Twitter feeds, but let me take this opportunity to highlight a few examples:
- ACL’s Self Advocacy Resource and Technical Assistance Center has developed a variety of plain-language resources by and for people with disabilities, including a recent vaccination guide;
- The California State Council on Developmental Disabilities has been a leader in language access, providing resources for people with DD and their families important COVID-19 materials in English, Spanish, Mandarin, and Vietnamese; and
- The Centers for Disease Control and Prevention has published 27 ASL videos covering a wide range of COVID-19 topics.
Equity and Data: Decisions about what data we collect and how we collect it determine whose voices are heard and whose voices are left out. Unfortunately, information about disabilities is rarely included in data collection, which has created a long-standing lack of data about health care access and outcomes for people with disabilities, particularly those with DD. Consequently, we lack comprehensive information about COVID-19 infections, deaths and vaccine access for people with disabilities.
COVID-19 has served as a sharp illustration of the health disparities created by date inequity; without data, it is challenging to identify unique needs and quantify the impact of the pandemic for people with disabilities. From the beginning of the pandemic, ACL has been working with federal partners to accelerate efforts to close this data gap. At the same time, we are working to ensure that the data we collect represents the diversity of the DD community, and that the most marginalized members of the DD community are reflected in the data we collect. As we celebrate DD Awareness Month, we are working to make this principle a reality across our data collection projects and partnerships. This effort is part of a much broader administration-wide commitment to promote equity in all aspects of the federal government’s work.
This has been such a challenging year, and we still have a lot of work ahead of us. But during DD Awareness Month, I encourage everyone to also take time to recognize what we have accomplished together. All of us at ACL applaud the extraordinary dedication and advocacy that we see every day across the DD community. We pledge to work alongside you this month, and every month, in support of people with developmental disabilities because America is stronger when we include everyone.