Date Presented 04/22/2023
This study examines pre- and mid-pandemic access to health care and quality of life among adults with intellectual and developmental disabilities (IDD). Identification of barriers faced by adults with IDD allows practitioners to better address their needs by tailoring interventions and supports.
Primary Author and Speaker: Hannah Laufenberg
Contributing Authors: Karla Ausderau, Allison Caudill, Emily Hickey
PURPOSE: The present study aimed to compare pre- (2017) and mid-pandemic (2021) access to specialized healthcare and quality of life (QoL) among adults with intellectual and developmental disabilities (IDD) receiving long term care (LTC) support services.
DESIGN: Participants were over 18, from Wisconsin, and received (LTC) support services. The survey was completed by adults with IDD who received LTC, or a carepartner; 83% (n=275) of reporters were carepartners and 17% (n=56) were adults with IDD in 2017; 88% (n=181) carepartners and 11% (n=23) adults with IDD in 2021.
METHOD: The present study was part of a larger study surveying two cross-sectional state-level samples of adults receiving LTC services in 2017 and/or 2021.
RESULTS: There was a significant difference in QoL between 2017 and 2021, with QoL being higher in the 2017 cohort (M=3.14, SD=.761) than in the 2021 cohort (M=2.99, SD=.768; p=.028). Across time points, QoL was predicted by reporter, with QoL reported by a carepartner (M=3.12, SD=.747) being higher than QoL reported by people with IDD (M=2.90, SD=.850; p=.032). There was a significant difference in access to a health care specialist between 2017 and 2021 with access being higher in 2017 (M=1.982, SD=.761) than in 2021 (M=1.896, SD=.306; p<.001). This finding was maintained when controlling for sex, reporter, and age.
CONCLUSION: Quality of life can have impacts on occupational performance as well as therapeutic practice. With adults with IDD reporting lower QoL during the pandemic, while caregivers reported higher mid- pandemic QoL, there is a significant gap in the perception of QoL. This work highlights the need for multi-informant reports of QoL to understand the unique experiences of persons with IDD, allowing clinicians to address barriers by tailoring interventions and supports. Access to specialized healthcare services was also more difficult during the pandemic, potentially influencing quality of life and care for adults with IDD.
References
Anderson, L. L., Humphries, K., McDermott, S., Marks, B., Sisirak, J., & Larson, S. (2013). The state of the Science of Health and wellness for adults with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 51(5), 385–398. https://doi.org/10.1352/1934-9556-51.5.385
Hewitt, A. S., Smith, J. G., & Weintraub, L. (2022). Covid-19 and persons with intellectual and developmental disabilities: Implications for future policy, practice, and research. American Journal on Intellectual and Developmental Disabilities, 127(4), 270–277. https://doi.org/10.1352/1944-7558-127.4.270
Williamson, H. J., Contreras, G. M., Rodriguez, E. S., Smith, J. M., & Perkins, E. A. (2017). Health Care Access for adults with intellectual and developmental disabilities: A scoping review. OTJR: Occupation, Participation and Health, 37(4), 227–236. https://doi.org/10.1177/1539449217714148
