To mark the 30th anniversary of the Americans with Disabilities Act, HHS has compiled some of the achievements under President Trump to empower, support, and protect Americans with disabilities, made possible by work at HHS, by our partners in state and local government, and by advocates and Americans with disabilities.
Defending Rights and Supporting Critical Needs During COVID-19
- Awarding Funding to Address the Needs of Individuals with Disabilities in Emergency Responses: CDC has awarded $3 million in COVID-19 funding to support the development of resources for people with disabilities who have extreme low literacy and the creation of national standards to inform emergency response communications for reaching people with disabilities. CDC also awarded $10 million in COVID-19 funding to the Association of State and Territorial Health Officials, the National Association of County and City Health Officials, and the Association of University Centers on Disabilities to address the needs of Americans with disabilities in COVID-19 preparedness, planning, mitigation, and recovery efforts.
- Unprecedented Support for Independent Living: Through the CARES Act, the Administration for Community Living (ACL) awarded an unprecedented $85 million in direct funding to more than 350 Centers for Independent Living (CILs), community-based organizations led by individuals with disabilities. With this funding, individuals received food and prepared meals, personal care and basic home items, personal protective equipment such as masks and gloves to ensure continuity of support services, housing assistance, and alternative transportation for medical appointments. CILs also transformed direct services to include virtual options and supported people with disabilities by providing access to technology and the Internet.
- Guidance on Disability Rights Protections: In March 2020, the HHS Office for Civil Rights (OCR) issued a Bulletin on Civil Rights laws and HIPAA during the COVID-19 pandemic, reminding covered entities of their obligations to provide effective communications and reasonable modifications to persons with disabilities. This follows emergency guidance issued in 2017, 2018, and 2019.
- Preventing Disability Discrimination in Triage Decisions: In April 2020, OCR resolved a complaint against Pennsylvania after the state revised its interim Crisis Standards of Care to prevent disability discrimination in triaging of vital health care.
- Preventing Disability Discrimination in Ventilator Allocation Decisions During COVID-19: In April 2020, OCR resolved a complaint with the state of Alabama concerning ventilator rationing guidelines that categorically excluded persons with profound intellectual disabilities.
- Preventing Disability Discrimination in Hospital “No Visitor” Policies During COVID-19: In June 2020, OCR resolved a complaint with the state of Connecticut after the state issued an executive order on no-visitor policies in hospitals to ensure these policies do not deny reasonable access to needed support persons for people with disabilities. OCR also resolved a complaint with Hartford Hospital after it agreed to grant a 73-year-old woman with aphasia access to support persons to help with her communication and comprehension in her treatment.
- Protecting Rights and Preventing Abuse in Long-Term Care: ACL began issuing guidance in March to help State Long-Term Care Ombudsmen continue working to protect the health, welfare, and rights of nursing home residents, most of whom are protected under the ADA.
- Protecting Against Disability Discrimination in State Triage Plan: In June 2020, OCR resolved a complaint against Tennessee after it updated its crisis standards of care plan to ensure that the criteria does not discriminate against persons based on disability or age. Through technical assistance, the state updated its policies to ensure that hospitals do not deny life-saving care during a crisis based on stereotypes about disabilities or other impermissible factors.
Protecting Rights in Healthcare
- Access to Health Care for Individuals with Developmental Disabilities: In February 2019, OCR resolved a case in North Carolina alleging discrimination against an individual with autism who was deemed ineligible to be on a heart transplant wait list because of his disability. After OCR intervened in the case, the medical facility reversed course and allowed the individual to be eligible for the waiting list.
- Access to Sign Language Interpreter for Deaf Child: In July 2019, OCR resolved a case with Mid-Maryland Musculoskeletal Institute to protect a 6-year-old patient’s rights to effective communication while attending physical therapy sessions.
Preventing Discrimination in Human Services
- Ensuring Beneficiary Safety in Group Homes: In January 2018, OCR, the HHS Office of Inspector General, and ACL jointly published a report: “Ensuring Beneficiary Health and Safety in Group Homes Through State Implementation of Comprehensive Compliance Oversight.” ACL has subsequently invested nearly $10 million in projects that seek to enhance the quality, effectiveness, and monitoring of home- and community-based services (HCBS) for people with developmental disabilities; to improve the quality of community living; and ensure health and safety.
- Disability Discrimination Protections for Individuals with Opioid Use Disorder: In May 2020, OCR secured an agreement with West Virginia to protect persons in recovery from opioid use disorder, resolving an uncle’s complaint that he had been denied the ability to gain custody of his young niece and nephew (in state custody) due to his enrollment in a medication-assisted treatment (MAT) program.
- Protections for Individuals with Disabilities in State Child Welfare Systems: In November 2019, OCR entered an agreement with Oregon to protect the rights of parents with disabilities. OCR’s investigation was spurred by allegations that the Oregon Department of Human Services removed two children from their parents because of stereotypical beliefs and assumptions concerning the parents’ intellectual disabilities.
Empowering Americans with Disabilities to Live in the Community
- Helping Veterans with Disabilities Remain in Their Homes: ACL has worked with the Department of Veterans Affairs to expand the Veteran-Directed Care program, which allows veterans to use VA benefits to work with ACL-supported aging and disability networks to access the services they need to live independently.
- Training and Assistance under the ADA: ACL’s ADA National Network provides training and technical assistance on the Americans with Disabilities Act. In 2019, the Network hosted over 1,100 training activities and nearly 17,000 individual consultations with people with disabilities, agencies, businesses, and state and local governments. During the pandemic, the ADA Network has provided technical assistance to consumers and employers on the implications for disability-related services and return to work.
- Promoting Innovation to Combat Isolation: In partnership with the HHS Office of the Assistant Secretary for Health, ACL launched a prize competition to combat social isolation for people with disabilities, veterans and older adults. The Mobilizing and Empowering the Nation and Technology to Address Loneliness & social isolation (MENTAL) Health Innovation Challenge will award $750,000 in prizes for development of an easy-to-use online system that offers recommendations for programs, activities, and resources that can help users connect to others and engage in the community, based on their individual needs, interests, and abilities. The winning system will be announced and demonstrated at the Consumer Electronics Show (CES) in January 2021 and will become the centerpiece of a national public awareness campaign.
- Improving Home- and Community-Based Services (HCBS) in Medicaid: CMS issued several pieces of guidance to assist states in implementing the criteria defining a home and community-based setting, balancing the need to ensure settings facilitate and empower beneficiary autonomy and community integration with the need to ensure a workable implementation approach for states and providers. CMS has developed an HCBS quality framework, strategy, and work plan to align and coordinate activities within CMS and with other partners related to HCBS quality measurement, in order to ensure the health and safety of people receiving HCBS; promote high-quality and accessible HCBS; and promote value-based care and services for people receiving HCBS.
- A New Center to Combat Health Inequities: In September 2019, ACL launched the Center for Human Dignity in Healthcare for Individuals with Disabilities to reduce life-limiting healthcare inequities faced by people with disabilities. The center, based at the Children’s Hospital Medical Center at the University of Cincinnati, increases education around four focus areas: Prenatal Genetic Testing, Mental Health and Suicidality, Organ Transplantation and Aging and End of Life. The Center is conducting an analysis to identify gaps and investigate the impact of discrimination and disparities on the medical treatment outcomes of people with intellectual and developmental disabilities (ID/DD). In response to COVID-19, the Center developed two fact sheets on medical discrimination: one for people with disabilities and one for medical practitioners.
- Promoting Physical Activity for Americans with Disabilities: ACL refocused the I Can Do It program, returning it to its roots as a program that partners with schools to encourage and support physical activity for children with disabilities.
Expanding Work Opportunities
- A First-Ever Task Force to Boost Employment for Americans with Disabilities: ACL launched a historic government-wide task force focused on expanding employment for Americans with disabilities, to build on the historically low unemployment rates for Americans with disabilities in the booming Trump economy before COVID-19. Fourteen federal agencies actively participate in the task force’s work on key issues, particularly the removal of barriers that inhibit employment and, recently, the anticipated difficulty of post-COVID-19 employment and reentry.
- A Prize to Boost Private-Sector Support for Employment: As part of National Disability Employment Awareness Month 2019, ACL announced a national prize competition, Inclusive Talent Pipeline for American Business, which drew nearly 60 applicants from the private and nonprofit sectors to create and operationalize innovative and market-disruptive approaches to recruiting, retaining, and advancing employees with disabilities. Five Round One prize winners were announced in April 2020 and are currently preparing to pilot their proposed models in the fall of this year.
- New Wheelchair Options in Medicare: Medicare expanded coding and increased payments for complex rehabilitative wheelchairs to ensure access to newer, expensive complex rehabilitative wheelchair options and accessories.
- Broader Access to Therapy: Medicare allowed therapy assistants (rather than only therapists) to perform maintenance therapy under the Medicare home health benefit starting in 2020, helping to expand access to this important service for all beneficiaries, including individuals with disabilities.
- Reforming Payment for Medicare Advantage Beneficiaries with Disabilities: Starting in 2017, CMS modified the Medicare risk adjustment model used to pay beneficiaries enrolled in Medicare Advantage plans to have separate factors for disabled (versus aged) beneficiaries, to better reflect their expected cost to the plans, allowing payments to be better targeted to plans based on the cost of their enrollees.
- Expanding More Flexible Preventive Services: For 2018, CMS finalized billing codes for “prolonged preventive services,” allowing for additional Medicare payment for preventive service visits that extend beyond the typical time, which can be important for beneficiaries with mobility or cognitive disabilities who may take extra time to complete these visits.
- Closing the Life Expectancy Gap: In June 2020, ACL announced a funding opportunity to improve health outcomes for the ID/DD population, who have significantly lower life expectancy than their non-ID/DD peers. Funding will support a national consortium that will build upon existing efforts to collaborate with medical and allied health schools to embed ID/DD content into their curriculum.
Expanding Research on Disability Issues
- Establishing Prevalence of ID/DD: ACL is leading an interagency effort to establish and maintain valid and reliable prevalence rates of intellectual and developmental disabilities and to improve data about health status and factors that influence health outcomes of individuals with ID/DD.
- A First-Ever Government Wide Inventory: A partnership between the National Institutes of Health (NIH) and ACL’s National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) aims to create a government-wide inventory of all federally supported disability research, launching in the fall of 2020, housed at the NIH Library.
- Building a Limb Loss and Preservation Registry: In 2018, NIH and the Department of Defense announced plans to establish a registry to document the number of people in the United States living with limb loss and to provide insights on their challenges and needs.
- Studying Conditions that Affect Americans with Down Syndrome: In June 2018, NIH launched the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) project to study conditions that affect both individuals with Down syndrome and the general population. The goal is to learn more about these conditions in both populations so that new treatments can be developed in both groups. People with Down syndrome and other intellectual disabilities have often been excluded from participating in clinical research and clinical trials because it was thought that it would be too difficult to include them in complicated research studies, or the process to provide informed consent would be too challenging. People with Down syndrome are now being invited to speak up about their research needs, and new clinical trials supported by INCLUDE focus on topics such as sleep apnea, Alzheimer’s disease, and treatment of co-occurring ADHD.
- New Hope for Turning Thoughts into Speech: The National Institute on Deafness and Other Communications Disorders (NIDCD) supported groundbreaking research on augmentative and alternative communication devices, which help people with voice, speech, or language disorders communicate. This includes people with ALS or brainstem stroke who lose their ability to move their muscles for writing or speaking, even as they are able to think and reason normally. In an important advance, NIDCD-supported researchers developed an approach to turn a person’s thoughts directly into speech. The scientists trained a computer algorithm that is typically used to interpret voice commands to decipher brain activity instead. Individuals with epilepsy undergoing brain surgery listened to sentences spoken by different people, and the researchers used the neural patterns measured from these patients to train the computer algorithm. When the patients simply thought of the words they had heard, the algorithm was able to accurately decipher the thoughts 75 percent of the time.
- Making Hearing Aids More Accessible and Affordable: Approximately 28.8 million adults in the United States could benefit from using hearing aids, yet only one in four has ever used one. Research funded by NIDCD directly contributed to a measure included in the 2017 FDA reauthorization act to create a first-of-its-kind category of direct-to-consumer hearing aids for adults with perceived mild-to-moderate hearing loss, which is expected to spur innovation, reduce consumer costs, and improve hearing health care for millions of Americans who have hearing loss by making hearing aids more accessible and affordable.
- Designing Visually Accessible Spaces for People with Low Vision: Mobility challenges are one of the most serious consequences of impaired vision, and one approach for dealing with this problem is to make public spaces more accessible for people with low vision. Building on the concept of environmental modifications that enhance physical mobility (such as ramps for wheelchairs), the National Eye Institute (NEI) supported a combination of empirical and computational research to extend the concept of environmental modifications to “visual accessibility” (i.e., to what degree one can use vision to travel safely through an environment). In the final phase of this project, the models developed to predict low-vision visibility and navigability of real-world spaces are being translated into a set of open-source software modules to enhance architectural and lighting design for visual accessibility. The intended use is for architects and lighting designers to submit a design to the software and get a labeled output indicating what is likely to be a potential mobility hazard for pedestrians with reduced acuity and/or contrast sensitivity.
- Advances in Turning Thoughts into Computer Control: NEI is supporting work aimed at helping quadriplegic people use computer interfaces. By implanting recording electrodes in visual and motor areas of the brain, the researchers are able to turn the person’s intentions for cursor movements on a computer screen into action.
- Progress on Restoring Visual Perception to the Blind: NEI is supporting work aimed at helping blind people achieve useable visual perception. By placing stimulating electrodes on the visual cortex of the brain, the researchers are able to turn images recorded by a camera mounted on the head into the sensation of a rough pattern of light and dark. This interface is being gradually improved by training computational algorithms to optimize the pattern of stimulation. The blind patient also has to be trained to work with the brain-machine interface, but good progress is being made.