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Collaborative on Health Reform and Independent Living and the National Survey on Health and Disability (NSHD)

CHRIL overview

The hypothesis posed by KU-IHDPS staff leading CHRIL research project 1: coverage expansions under the ACA and other health reforms will have a positive effect on the health, function, quality of life and community participation of working-age adults with disabilities. Project 1 directly assesses consumer-reported experiences via primary data collection. In Year 1 (2016), the project used data from the Urban Institute's nationally-representative Health Reform Monitoring Survey (HRMS) to understand baseline conditions for people with disabilities just prior to and shortly after ACA implementation. In years 2 and 4 (2017 and 2019), the project conducted national interviews with consumers to gain a richer understanding of their individual experiences. In years 3 and 5 (2018 and 2020), the project fielded a national consumer survey to better assess longer-term experiences and outcomes. Overall, this project documents the experiences of working-age adults with disabilities in obtaining and maintaining health insurance, and assess the impact of insurance on access to care, health and function. It provides near “real-time” insights on the lived consequences of health reform during and after ACA implementation, and will also inform other CHRIL research projects and KT activities.

National Survey on Health and Disability (NSHD) Overview and Data Availability

NSHD BACKGROUND: KU-IHDPS first fielded the NSHD (formerly known as the National Survey on Health Reform and Disability, NSHRD) in 2018 as part of the CHRIL. The NSHD provides detailed information for a nationally representative group of US adults aged 18-64 about their experiences with health insurance and health care services. The domains of the survey include: access to health insurance and health care services; use of and access to paid and unpaid personal assistance services; employment, SSI and SSDI status; community participation; insurance type(s) and coverage (including uninsured); unmet health care needs; health status; items related to social determinants of health and demographics (including multiple measures of disability). In its first fielding in 2018, 1,246 individuals completed the fully accessible and anonymous online survey, on average taking 20 minutes to complete. Recruitment for the survey included partnerships with more than 50 disability organizations across the US.

The second fielding of the NSHD occurred October 2019-January 2020. This second administration of the NSHD yielded 2,175 participants across all disability types with recruitment partnerships expanded to more 70 disability or condition-specific organizations and futher augmented using Mechanical Turk (Mturk). The most recent fielding of the NSHD occurred January- April 2021 with a sample size of 1,638. Created without the need to collect identifiable information, longitudinal analyses of NSHD data will be achieved through probability matching on specific non-identifiable variables.

DATA USE AND AVAILABILITY: Data from all three administrations of the survey are currently being analyzed by a multidisciplinary team of researchers from 8 different institutions (the NSHD Data Analyses Team). Many are CHRIL researchers, but others have obtained an NSHD limited data set (LDS) from KU-IHDPS and are conducting analyses on a variety of topics. The NSHD LDS is available to other researchers at no cost. The richness of the dataset lends itself to many varied analyses related to the impact of health policies and insurance coverage on the health, quality of life and community participation of people with disabilities, as well as social determinants of health for this population. Participation on the NSHD Data Analysis Team is also open to other researchers, post-docs, graduate and doctoral students. The LDS is currently available free of charge to other researchers by contacting the NSHD administrator, Noelle Kurth,

Findings from the NSHD have been and continue to be present at national conferences (e.g. NARRTC, AcademyHealth, APHA, AUCD). Peer-reviewed journal articles continue to be submitted and published by researchers on the NSHD Data Analysis Team (a list of current publication is provided below). Topics included in these publications and presentations to date include: intersectionality and compounded health disparities for people with disabilities who identify as LGBTQ+; Health Insurance Motivated Disability Enrollment (HIMDE); the impact of Medicaid expansion; trends in community participation, employment and social isolation in rural areas; profiles of use of paid and unpaid personal assistance services; inadequate provider networks and unmet health care needs among people with disabilities; disparities between adults with autism spectrum disorder in access to care and unmet health care needs; health insurance stability and its impact on care for people with disabilities. The analysis team's activities and access to the NSHD dataset will continue in 2021. In addition, further NIDILRR funding will allow KU-IHDPS (Hall & Kurth) to continue to field the NSHD in 2022-2024.

Listed below are publications using NSHD data (as of Sept 2021):

1. Ipsen C & Repke M. (in press). Reaching people with disabilities to learn about their experiences of social connection and loneliness. Disability and Health Journal.

2. Hughes PM, Wu BS, Annis EI, Brunelli, BA, Kurth NK, Hall JP, & Thomas KC. (in press). Association of inadequate provider networks with unmet need for health services and self-employment among people with disabilities. Journal of Healthcare for the Poor and Underserved.

3. Streed CG, Hall JP, Boyd BA, Batza K, & Kurth NK. (in press) Characteristics of sexual and gender minority respondents of the 2019-202 National Survey on Health and Disabilities. LGBT Health.  

4. Hall JP, Kurth NK, Goddard K. (2021). Assessing factors associated with social connectedness in adults with mobility disabilitiesDisability and Health Journal, special issue.

5. Ipsen C, Kurth NK, Hall JP. (2021) Evaluating MTurk as a recruitment tool for rural people with disabilitiesDisability and Health Journal. 

6. Hall JP, Batza K, Streed CG, Boyd BA, Kurth NK. (2020) Health Disparities Among Sexual and Gender Minorities with Autism Spectrum DisorderJournal of Autism and Developmental Disorders. 2020:1-7. doi:10.1007/s10803-020-04399-2. 

7. Smith S, Hall JP, Kurth NK. (2020) Perspectives on health policy from people with disabilitiesJournal of Disability Policy Studies. 

8. The Research and Training Center on Disability in Rural Communities. (August 2020). America at a Glance: Social isolation and loneliness during the first wave of COVID-19. Missoula, MT: The University of Montana Rural Institute for Inclusive Communities. 

9. Hall JP, Kurth NK. (2019). A Comparison of Health Disparities Among Americans With Intellectual Disability and/or Autism Spectrum Disorder and Americans With Other DisabilitiesInclusion 7(3), 160-168doi: 10.1352/2326-6988-7.3.160 

10. Repke MA, Ipsen C. (2019). Differences in social connectedness and perceived isolation among rural and urban adults with disabilitiesDisability and Health Journal. 13(1), doi:10.1016/j.dhjo.2019.100829. 

For more information about the NSHD, analyses using it and obtaining a limited data set, please contact Noelle Kurth (, 785-864-7085).

Access 2018 and 2020 NSHD Data Summary frequencies and crosstabulation figures

Visit the website of the Collaborative on Health Reform and Independent Living (CHRIL) or more information about the CHRIL as a whole.

Jean P. Hall, Ph.D. - Co-Principal Investigator

Noelle K. Kurth, M.S. - Research Associate, NSHD Administrator