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 Reform and Disability (NSHRD)
KU-IHDPS first fielded the NSHRD in 2018 as part of the CHRIL. The NSHRD provides detailed information for a nationally representative group of US adults aged 18-62 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 NSHRD will occur in the Fall/Winter of 2019-2020. The survey will be open for 5 months and we anticipate a larger sample size due to implementation of oversampling methods in rural areas. Created without the need to collect identifiable information, longitudinal analyses of NSHRD data from multiple years will be achieved through probability matching on specific non-identifiable variables.
Currently, data from the 2018 NSHRD is being analyzed by a multidisciplinary team of researchers from 7 different institutions (the NSHRD Data Analyses Group). Many are CHRIL researchers, but others have obtained an NSHRD limited data set (LDS) from KU-IHDPS and are conducting analyses on a variety of topics. The NSHRD 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 NSHRD Data Analyses Group is also open to other researchers, post-docs, graduate and doctoral students.
Findings from the NSHRD will be presented at national conferences (NARRTC, AcademyHealth, APHA) during 2019. 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.
For more information about the NSHRD and obtaining the NSHRD 2018 limited data set, please contact Noelle Kurth (email@example.com, 785-864-7085).
If you are interested in completing the survey in 2019, please email firstname.lastname@example.org and a link to the survey will be emailed directly to you in October 2019.
For more information about the CHRIL as a whole, including all publications, please go to: www.chril.org