Caregiver Satisfaction with Intellectual Disability Services: Results from the National Core Indicator-Intellectual and Developmental Disabilities (NCI-IDD)

Abstract

Background and Purpose: Care services and community engagement are central to the lives of people with intellectual and developmental disabilities (IDDs). These services and activities provide essential supports and assistance, enabling persons living with these disabilities to integrate into the community and society. Given the paucity of nationally representative data regarding Americans who live with IDDs, little is known about the impact of socioeconomic disparities on care services and community engagement within this population. This study seeks to address this research gap by examining the variations in service satisfaction, capacity to change provider, community engagement, and services affected by COVID across different socioeconomic strata.

Methods: We conducted a cross-sectional study of care services and community engagement using the Adult Family Survey 2021-22 dataset from the National Core Indicator-Intellectual and Developmental Disabilities (NCI-IDD). Two logistic regression models and two ordinary linear regression (OLS) models were conducted to identify and compare the variation in care services and community engagement, and to examine key covariates associated with variation in these outcomes. We examined intellectual and developmental disabilities overall, and specific categories that include intellectual disability, autism spectrum disorder, cerebral palsy, and Down syndrome.

Results: Caregivers with college degrees reported greater dissatisfaction with services and care provided to their loved-on (p<.001). Compared with individuals receiving care under 25, the satisfaction is going up as individuals’ age is up (p<.001) Among those receiving care, women exhibited 19% greater odds of participating in community activities compared to males. Urban residents were less likely to engage with the community (OR=0.81, p<.01), as were individuals with higher household income (p<.001). Caregivers with college degrees were also more likely to report that IDD services were changed, canceled, or reduced during COVID.

Conclusions and Implications: Contrary to our expectations, caregivers’ with higher incomes and higher educational level were more likely to report dissatisfaction with services and care, reported lower community-engagement by their loved-ones, and were more likely to report COVID-related service disruption. These patterns may indicate that respondents with higher incomes or more years of completed education may have higher expectations for services delivered and participation in the community. Qualitative research needs to be conducted to explore the intersectionality between education levels and service satisfaction.