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Reinvigorating the Rehab Act: Bringing “Nothing About Us Without Us” to the Research Enterprise

September 26, 2023
Source: Administration for Community Living (ACL)

Written by: Anjali Forber-Pratt, Director of ACL’s National Institute on Disability, Independent Living, and Rehabilitation Research

In 1978, what is now the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) was created by an amendment to the Rehab Act. While our name has changed a few times in the years since, our basic purpose and reason for being has remained the same.

NIDILRR funds applied research that results in innovative technological devices, prototypes, measurement tools, interventions, and more to enhance community living, health and function, and employment among people with disabilities. Whereas other federal research entities fund prevention, cure, and acute rehabilitation research, NIDILRR focuses on rehabilitation research that is tied more closely to longer-term outcomes, such as independent living and community participation. Over the years, NIDILRR-funded research has led to accessible voting machines, accessible lavatories on airplane bathrooms, and much more.

Today, NIDILRR is leading the way on ensuring that research includes all of us. “Nothing about us without us,” the famed mantra of the disability community, also must apply across the entire research enterprise. At NIDILRR, we are working to identify and remove barriers that result in disabled people being underrepresented in disability research — both as researchers and as study participants.

First, like many agencies across the federal government and at other research institutes across the country, NIDILRR has been making a concentrated effort to increase the number of staff members and principal investigators (PIs) with disabilities on funded grants. In 2022, more than 15% of NIDILRR’s grants were led by PIs with a declared disability.

Growing the field of disabled scientists will enhance the quality of the research needed to identify and eliminate barriers experienced by people with disabilities. We don’t know what we don’t know, and those with lived experiences are better able to ask the research questions that are most relevant to the community, with the depth that is needed instead of just scratching the surface. Increasing the number of disabled researchers also will bolster efforts to engage disability communities in these studies.

NIDILRR has also recently strengthened its peer review criteria to better value the recruitment of disabled and those from other underserved populations onto proposed grantee teams. In an update to its regulations published last year, NIDILRR has also strengthened its peer review criteria to better value the recruitment of disabled people and those from other underserved populations onto proposed grantee teams.

NIDILRR is also working to address barriers to participation in research studies for people with disabilities by encouraging adoption of universal design principles in research study design.

For example, participants with intellectual and developmental disabilities may need accommodations such as “chunking,” which involves breaking interview questions into smaller pieces, to participate in a research survey. Or participants may need supports such as a Braille or American Sign Language version of the survey. If these modifications to protocol are not considered in the approval of the research study process (typically from institutional review boards), then those participant voices won’t likely be included in the research.

It also is imperative that we are intentional about including people with varied backgrounds and experiences — particularly people who are from underserved and underrepresented communities as well as disabled — in this work. Barriers to participating in research are compounded for disabled people who also come from other communities who are underrepresented in research. Many multiply diverse researchers find that securing federal funding is more challenging and/or are dissuaded from pursuing advanced degrees required to lead such research. Black and brown disabled individuals face additional challenges when they seek to participate across the research enterprise.

The diversity of the disability community is an asset, and rehabilitation science is better with the perspectives of all of us represented. Our work must be inclusive of all people with disabilities, as participants, as researchers, as contributors, and as beneficiaries of the research findings.

In the years to come, ACL’s NIDILRR will continue to generate new knowledge, develop new products and interventions, and promote its findings to shape policy, practice, and behaviors. By emphasizing the importance of including people with disabilities and other stakeholders in the disability research process, we are naturally increasing the relevance of NIDILRR-funded work and the likelihood that stakeholders will use NIDILRR-generated knowledge and products in the future.

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