Thanks to ACL and NIDILRR…

For more than 45 years, NIDILRR has funded thousands of innovative research and development grants aimed at supporting people with disabilities to live fully and independently in the communities of their choosing. These grants have led to programs, services, and technology in use every day. NIDILRR-funded work touches every area of life: activities of daily living at home and in the community, education and school to work transition, employment, health care, caregiving, and aging with and into disability.

In fiscal year (FY) 2023, NIDILRR funded more than 270 grants totaling more than $112 million across over 1,500 projects. NIDILRR programs fund research toward the development of new knowledge and innovative technological devices, prototypes, measurement tools, interventions, and other informational products to enhance community living, health and function, and employment among people with disabilities. NIDILRR funding has also led to the growth of a powerful research and development workforce, including people with lived experience of disability. Since its inception, NIDILRR has funded more than 300 individual fellowships, and its Advanced Rehabilitation Research Training program supports more than 70 emerging scholars and researchers every year. In FY23, nearly 20% of NIDILRR grants were led by researchers who self-identified as having a disability.

NIDILRR funded research and development have helped to set standards across industries. These include evidence-based practice guidelines for diagnosis and treatment of people with prolonged disorders of consciousness, standards for accessible medical diagnostic equipment and exercise equipment, and rules and regulations that make it possible for people to travel, access web content, and much more. NIDILRR’s Model Systems conduct innovative research in traumatic brain injury, spinal cord injury, and burn injury, helping thousands of people through rehabilitation and beyond, and gathering data that is revealing profound information about the lifelong impacts of these injuries. These centers have become a benchmark of quality, leading to top rankings for the rehabilitation hospitals that host them.

The Department of Health and Human Services recently announced significant reorganization plans, which include dismantling the Administration for Community Living (ACL), NIDILRR’s parent agency, and dispersing “critical programs and services” to other agencies and divisions within the department. We at NARRTC, along with other members of the Disability and Rehabilitation Research Coalition (DRRC) (pdf), fear that these plans will seriously jeopardize the decades of innovation and progress accomplished under NIDILRR funding, and risk the loss of this foundational institute.

We are sharing information here and in our conversations with the community and our legislators about the importance of preserving ACL and NIDILRR. We hope you will join us in spreading the word. Here are just a few examples of the achievements and innovation that have emerged from NIDILRR-funded programs:

1. Thanks to NIDILRR-funded research from ACL, we have the technology used in accessible voting machines and that makes ATMs accessible for those who are blind or low vision.
2. Thanks to NIDILRR-funded research from ACL, we have accessible lavatories on airplanes.
3. Thanks to NIDILRR-funded research from ACL, we have tactile map technology that is used in places like museums and national parks around the country.
4. NIDILRR has partnered with SAMHSA, for example, for more than three decades to co-fund grants that advance the health and function, employment, and community living and participation outcomes among people with serious mental illness.
5. Thanks to ACL, NIDILRR-funded grantees continue to lead the way in creating new knowledge about the experience of parenting with a disability and the policies that are barriers to and facilitators of positive parenting outcomes among people with a wide variety of disabilities.
6. Thanks to ACL, NIDILRR grantees have conducted research toward supported decision-making interventions, which help people with intellectual disabilities to live more independently in the community.
7. Thanks to ACL, NIDILRR grantees are conducting systematic research activities to improve supports and services available to family caregivers, with the aim of improving community living outcomes among people with disabilities and their caregivers.
8. Thanks to ACL, NIDILRR-funded TBI Model Systems program has been instrumental in shaping the field’s understanding of TBI as a chronic health condition that requires lifelong management to promote positive health and community living outcomes.
9. Thanks to ACL, NIDILRR grantees developed the first-ever mental health self-management education referral algorithm, designed to help primary care (and other) providers identify and refer their patients to peer-led mental health self-management programs, including online options during the COVID-19 pandemic, across the United States.
10. Following a history of funding to improve assessments and treatments for persons with significant TBI, ACL’s NIDILRR collaborated with the American Academy of Neurology and the American Congress of Rehabilitation Medicine to sponsor the development of evidence-based practice guideline recommendations for the diagnosis and treatment of people with prolonged disorders of consciousness.
11. Thanks to ACL, NIDILRR grantees produce the monthly “national Trends in Disability Employment” (nTIDE) reports and webinars upon release of the Bureau of Labor Statistics’ monthly jobs report. These reports have been cited by high-profile financial and labor market outlets.
12. Thanks to ACL, NIDILRR grantees have demonstrated that an intentional meeting between hiring managers and a vocational rehabilitation professional reduces employers’ implicit bias about the competence of potential employees who are blind.
13. Thanks to ACL, NIDILRR grantees have demonstrated that youth and young adults with I/DD who participate in a customized employment intervention experience significant increases in independence and employment outcomes.
14. Thanks to ACL, NIDILRR-funded grantees have also conducted research that demonstrates the positive employment outcomes experienced by young adults with I/DD who participate in postsecondary education programs.
15. Thanks to ACL, NIDILRR-funded grantees are developing the evidence base for a variety of services and supports to promote Competitive Integrated Employment outcomes among people with a wide variety of disabilities.
16. Thanks to ACL, NIDILRR grantees have adapted the evidence-based intervention, Individual Placement and Support (IPS) and IPS Fidelity Scale, to more effectively meet the unique employment needs of youth and young adults with serious mental health conditions.
17. Thanks to ACL, NIDILRR grantees have contributed to significant innovations and system changes in the area of telecommunications access. They include research-based provision of real-time text in wireless phones, video relay services, and access to 9-1-1 services to be accessible for the disabled community.
18. Thanks to ACL, NIDILRR grantees have contributed to significant innovations in robotic and exoskeleton-based rehabilitation strategies for improved mobility and manipulation among children with cerebral palsy.
19. Thanks to ACL, NIDILRR-funded grantees have developed accessible exercise equipment, active video game controllers adapted for use by people with disabilities, virtual environments to socially motivate recreational exercise, and standards for the universal design of fitness equipment.
20. Thanks to ACL, NIDILRR grantees have worked to expand the availability and quality of data focused on people with disabilities living in rural areas.
21. Thanks to ACL, NIDILRR grantees have collaborated to conduct analyses of rural indicators in existing large datasets and have begun to provide research-based knowledge about the experiences of people with disabilities living in rural areas.
22. Thanks to ACL, across multiple decades, NIDILRR’s Model Systems grantees have been creating and maintaining invaluable longitudinal datasets that describe the characteristics and life trajectories of people who have experienced SCI, TBI, or burn injury. These publicly available datasets are the largest longitudinal datasets in the world that focus on their respective populations.
23. Thanks to ACL, the Annual Disability Statistics compendium produced by the Rehabilitation Research and Training Center on Disability Statistics and Demographics continues to provide high-quality disability statistical resources for people with disabilities, policymakers, and managers of programs at federal, state, and local levels.
24. Thanks to ACL, California’s Office of Emergency Services used the NIDILRR-funded ADA Network’s document entitled Accessibility at Drive-Thru Medical Sites to guide local efforts to provide accessible drive-thru vaccine clinics during the COVID-19 pandemic.
25. Thanks to ACL, the Metropolitan Transit Authority of Harris County (Houston, TX) used maps and data produced by the ADA National Network’s collaborative research project to focus their sidewalk improvement efforts on transit stops most frequently used by people with disabilities.