Collaborative on Health Reform and Independent Living (CHRIL)
The hypothesis posed by KU-IHDPS staff leading CHRIL research project 1 is: 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 will directly assess consumer-reported experiences via primary data collection. In Year 1 (2016), the project will use data from the 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 will conduct national interviews with consumers to gain a richer understanding of their individual experiences. In years 3 and 5 (2018 and 2019/2020), the project will field a national, consumer survey to better assess longer-term experiences and outcomes. This project will document the experiences of working-age adults with disabilities in obtaining and maintaining health insurance, and identify the impact of insurance on access, health and function. It will provide 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)
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 over 50 disability organizations across the US.
The second fielding of the NSHD occurred October 2019-January 2020. This second administration of the NSHD yeilded 2,175 participants across all disabilty types with recruitment partnerships expanded to over 70 disability or condition-specific organizations and futher augmented using Mechanical Turk (Mturk). Created without the need to collect identifiable information, longitudinal analyses of NSHRD data from 2018 and 2019/20 will be achieved through probability matching on specific non-identifiable variables (n=300 longitudinal completers).
Data from the 2018 NSHD is being analyzed by a multidisciplinary team of researchers from 7 different institutions (the NSHD Data Analyses Group). 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 this data lends itself to many varied analyses related to the impact of health reform 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 in the NSHD Data Analyses Group is also open to other researchers, post-docs, graduate and doctoral students. The 2019/2020 data will be available in Spring of 2020.
Findings from the NSHD were presented at national conferences (NARRTC, AcademyHealth, APHA) during 2019 and continue in 2020. Several peer-reviewed journal articles are also being submited by researchers in the NSHRD Data Analyses Group. 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) and 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. Three current publications using NSHD data are available here:
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, online ahead of print. https://www.ncbi.nlm.nih.gov/pubmed/31401187
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.online first.
For more information about the NSHD, analyses using it and obtaining a limited data set, please contact Noelle Kurth (firstname.lastname@example.org, 785-864-7085).
For more information about the CHRIL as a whole, including all publications, please go to: www.chril.org