Disability Research

High-quality disability research helps make important advances in policy, technology, and daily living to support people with disabilities. Good research requires comprehensive and accurate data, and at its best, guidance and input from impacted communities. “Nothing About Us Without Us” should be core to the disability research agenda to help undo ableist assumptions and biases, while centering community needs. Disabled researchers have been on the frontline of this move towards a human rights approach to disability research. In this next installment in our policy priorities blog series, we’re looking at one of the key institutions that makes this research possible. As the federal government faces a possible government shutdown over budget negotiations, we want to highlight the importance of full NIDILRR funding to continue this critical work.

Disability Research Now

The Department of Health and Human Services (HHS) has historically been the backbone of our national health research infrastructure. Under HHS, research has helped to contribute to important programs that support things like vaccine access and food safety. Operating under the HHS umbrella is the Administration for Community Living (ACL), whose mission is to ensure that older adults and people with disabilities can live fully and independently in their communities. ACL centers like the National Institute for Disability and Independent Living Rehabilitation Research (NIDILRR) are at the forefront of research that benefits and prioritizes disabled and aging communities.

NIDILRR is a prominent national funder dedicated to advancing disability research that supports whole person health cross-disability, while also meeting the needs of specific disability populations. It is just one of many different federal funders responsible for advancing disability and rehabilitation research, alongside entities like the Department of Veterans Affairs, Centers for Disease Control (CDC) and the National Institutes of Health (NIH). Through community-based and person-centered programs and grantmaking, this department bridges research with best practices in the field. Since its creation in 1978, NIDILRR has overseen more than 1,500 research projects to benefit the disability community while supporting technology access and knowledge translation. This work has included longitudinal studies, clinical trials, and pilot studies to demonstrate best practices in health and function, community living and employment.

NIDILRR’s work is unique in that its target population includes all disability types across the lifespan and expects that all of its funded work should center the input of individuals with disabilities at all stages of the research. NIDILRR has been leading the way to encourage putting the perspectives of those with disabilities at the forefront of all research thereby increasing the relevancy of the findings to the disabled community. Whereas other federal research entities fund prevention, cure, and acute rehabilitation research, NIDILRR’s research, development, and training activities have led the field of research for nearly two decades also contributing to a body of evidence about research from the perspective of the social model of disability. This has led to new knowledge about environmental- or systems-level factors that affect disabled communities. In more recent years, NIDILRR researchers have also begun to grow the evidence base using additional models of disability as the lens to frame the work such as the human rights model of disability that considers disability from a civil rights perspective.

NIDILRR’s grantmaking offers the essential resource-base to fund new initiatives that support and enhance the full participation of people with disabilities in society. For example, due to NIDILRR-funded research, we have the technology used in accessible voting machines, that also makes ATMs accessible for those who are blind or low vision. We also have improvements in airline accessibility for people with disabilities and advances in cutting-edge research related to competitive integrated employment.

NIDILRR Grantmaking

Examples of the types of funding provided from NIDILRR include:

Rehabilitation Research and Training Centers (RRTCs), which conduct coordinated, integrated, and advanced programs of research, training, and information dissemination in topical areas that are specified by NIDILRR. NIDILRR-funded RRTCs have focused on: aging for people with long-term physical disabilities; disability statistics and demographics; and employment of people with intellectual and developmental disabilities. These RRTCs generate and bring to the community important knowledge around health and employment to support community living.
Small business innovation research that advances technology development to create products that support people with disabilities
Rehabilitation Engineering Research Centers (RERCs), which offer technological solutions testing and creation to support people through their rehabilitation, or to support with navigating the community.
Support for post-doctoral trainees through the Advanced Rehabilitation Research Training (ARRT) that funds institutions of higher education to provide postdoctoral training, and individual research fellowships through the Mary E. Switzer Fellows program to conduct individual disability research projects. NIDILRR’s ARRT Program supports approximately 70 research fellows every year.
Field Initiated Projects (FIPs), which are investigator-initiated research or development projects covering a wide variety of target populations and research and development aims. These projects generate new knowledge through research or development on a smaller scale in comparison to larger center grants. Through this mechanism, NIDILRR has been able to support pilots in communities nationwide to explore which community supports and programs can help people thrive. Recently, these initiatives have included interventions to address brain fog for people with Long COVID, self-employment coaching for people with psychiatric disabilities, and assessment tools to determine vehicle safety for wheelchair users.
Model Systems for rehabilitation research, focusing on the specific needs of people with spinal cord injury, traumatic brain injury, or burns.
Support for the ADA National Network, which conducts research and provides technical assistance, training, and information resources related to the Americans with Disabilities Act (ADA). The ADA is a comprehensive civil rights law designed to guarantee people with disabilities equal opportunity in employment, public accommodations, state and local government services, transportation, and telecommunications. The ADA Network includes 10 regional centers and the ADA Knowledge Translation Center. Together, they serve local, regional, and national stakeholders to foster ADA implementation.

The National Rehabilitation Information Center (NARIC) is the digital library where NIDILRR publications and products are made available for public access to explore the findings from these various projects.

Disability Research Barriers

Since the start of a new administration, a slew of changes to federal infrastructure, processes, and norms have emerged to challenge the progress of disability research. Over 20,000 workers have been fired or placed on administrative leave from HHS as a whole, including over 3000 researchers, many of whom have the background and competencies to identify the key research gaps needed for the disability field. These public health workforce reductions are a major loss, severely limiting or wiping out our capacity to respond to and identify emerging public health challenges, and continue the work of advancing disability research. While workforce reductions are being touted as ways to save taxpayer money, they actually shrink the research and development resources needed to spur critical innovations for business and health and will likely increase costs to taxpayers in the long-term. Plans to reorganize HHS have the potential to further weaken the gains made toward improving a holistic understanding of disability, including the moving of ACL proposed under the current restructuring plan.

As the House and Senate work to reconcile a federal budget this fall, NIDILRR may be facing major cuts. The Senate bill proposes level funding for NIDILRR at $119M which would sustain and carry forward this important work, while the House is proposing deep cuts. As part of the Disability & Rehabilitation Research Coalition (DRRC), we are pushing for the adequate resourcing of NIDILRR to continue to improve scientific discoveries that improve independent living, rehabilitation and outcomes for people with disabilities. Full funding for NIDILRR will retain momentum for the disability research we need to empower our communities, and to carry forward ACL’s vision for the future of NIDILRR.

Read DRRC’s Statements on the importance of NIDILRR:

Our last post in this series focused on the movement toward Self-Direction in care management for people with disabilities. Follow our Policy Updates and the Disability & Public Health Newsletter to stay on top of our current advocacy on these issues.