Collaborative on Health Reform and Independent Living (CHRIL)

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). Created without the need to collect identifiable information, longitudinal analyses of NSHD data from 2018 and 2019/20 will be achieved through probability matching on specific non-identifiable variables (n=295 longitudinal completers).

DATA USE AND AVAILABILITY: Data from the 2018 and 2020 NSHD administration are 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 presented at national conferences (NARRTC, AcademyHealth, APHA, AUCD) during 2018 through 2020. 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.

Listed below are publications using NSHD data:

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

2. Repke MA, Ipsen C. (2019). Differences in social connectedness and perceived isolation among rural and urban adults with disabilities. Disability and Health Journal. 13(1), doi:10.1016/j.dhjo.2019.100829. Access this publication online.

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

4. Smith S, Hall JP, Kurth NK. (in press) Perspectives on health policy from people with disabilities. Journal of Disability Policy Studies.

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

6. 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. Available online:

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

CLICK HERE to access 2018 and 2020 NSHD data summary frequencies and crosstabulation figures

For more information about the CHRIL as a whole, including all publications, please go to:

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

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

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