Next week, the NIDILRR-funded Rehabilitation Research and Training Center on Disability Statistics and Demographics (StatsRRTC) will host a virtual release of its Annual Disability Statistics Collection. The collection includes the Annual Disability Statistics Compendium, the Annual Disability Statistics Supplement, and State Reports for County-Level Data. These three tools bring together statistics published by multiple federal agencies on employment, health, community living, and other outcomes. Similarly, the National Research Center for Parents with Disabilities created a Compendium of Data Sources for Parents with Disabilities in the US. Gathering these important resources into one place makes it easier to find the data needed for making laws and policies that benefit people with disabilities and lead to improved social outcomes.

Every year, millions of pieces of data are collected about people with disabilities through surveys funded by government agencies and non-governmental organizations, and through electronic records for health, education, and benefits, among other sources. Researchers can use these data to understand the experiences of people with disabilities in the past and present, and to think about how policies and practices could impact them in the future. Here are some examples of how NIDILRR-funded researchers are using data to improve the lives of people with disabilities:

• The RRTC for Place-Based Solutions for Rural Community Living, Employment, and Health uses a wide variety of large data sets to understand the disability experience in rural and urban areas, even down to the micro-county level. Their Maps project uses these data sets to highlight the geography of disability at the national and state level, and to show the impact of natural disasters, health trends, and more.
• The RRTC on Promoting Healthy Aging for People with Long-Term Physical Disabilities uses data from private insurance, Medicare, and Medicaid to explore the interactions between personal and environmental factors that promote or get in the way of healthy aging. Explore their policy briefs.
• Initiated under the Collaborative on Health Reform and Independent Living, the National Survey on Health and Disability gathered data from people with disabilities about their health, housing, employment, benefits, insurance coverage, and much more. The data is helping researchers understand how these factors impact the health of people with disabilities and their ability to fully participate in their communities. The survey has been fielded four times since 2018. Seventeen studies have been published so far and the data is available to researchers at no charge. More data collection is planned in the future, including that under the project Using the National Survey on Health and Disability Panel to Document the COVID-19 Pandemic Experiences of Working-Age Americans with Disabilities.
• The Americans with Disabilities Act (ADA) Participatory Action Research Consortium (ADA-PARC) is a collaborative research project of seven ADA Regional Centers that uses data from national sources to examine the impact of the ADA on community living, community participation, and work and economic participation of people with disabilities. ADA-PARC has assembled these data in map and table formats, displaying key indicators of outcomes in each area, such as access to community resources, access to housing, and economic status.
• The Spinal Cord Injury (SCI), Traumatic Brain Injury (TBI), and Burn Model Systems each have databases of data collected by individual model system centers on the individuals they have treated over the years. Participants in these databases are contacted on a regular basis to gather updated information on their health, employment, marital status, and much, much more.
  • The National SCI Statistical Center database includes data on more than 51,000 participants collected over 45 years. Data are used by the center to produce factsheets and reports and a life expectancy calculator. Researchers can access the data to conduct their own studies.
  • The TBI Model Systems National Data and Statistical Center database includes more than 17,000 participants collected over more than 35 years. Researchers can use request data sets and can use interactive tools developed by TBI Model System Centers. Current studies are using this data to understand chronic pain after TBI among other topics.
  • The Burn Model Systems National Data and Statistical Center database includes data on more than 6,700 participants collected over nearly 30 years. Researchers can learn about the database, its history, and how to access data files in this webinar series.
• The Health, Employment, and Longevity Project continues the work of the Spinal Cord Injury (SCI) Longitudinal Aging Study, which started in 1973. This study has been collecting data at regular intervals from a large group of people with SCI about their health, employment, home life, and participation in the community. The wealth of data has resulted in many successful projects funded by NIDILRR and other institutions, and several tools which practitioners can use to calculate life expectancy, falls risk, pressure injury risk, and more.

These are just a few examples of how NIDILRR grantees are collecting and using data to understand the disability experience. NARIC’s library collects the publications and products of these and other studies, which are indexed in REHABDATA and available through our document delivery service. Explore the collection or ask an information specialist for a custom database search!