Access to Services, Quality of Care, and Family Impact for Caregivers of Children with Autism Spectrum Disorders: A National Perspective Using 2009-2010 Children with Special Health Care Needs (CSHCN) Survey
Date of Graduation
School of Pharmacy
Pharmaceutical Systems and Policy
Claire St. Peter
The main objective of the study was to examine health care disparities for children with autism spectrum disorders utilizing two studies.;Study 1. A cross sectional study was conducted using the 2009-2010 National Survey of Children with Special Health Care Needs (N = 18,702). Chi-square analyses and logistic regressions were performed to examine the likelihood of reporting problems with access to services, quality of care, and family impact and compared across ASD, DD (cerebral palsy, down syndrome, developmental delay, or mental retardation), MHC (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression) and DD & MHC (those who had both DD and MHC) group, after adjusting for socio-demographics, number of special children in the household, child's functional ability, and presence of a physical condition. All analyses were adjusted for complex survey design.;Results: Access to Services: ASD caregivers were significantly more likely to have difficulty using services as compared to DD, MHC, and DD & MHC caregivers. ASD caregivers were more likely to report inadequate insurance coverage as compared to MHC, and DD but not DD & MHC caregivers. Quality of care: ASD caregivers were more likely to report lack of shared decision making, as compared to DD, MHC, and DD & MHC caregivers. ASD caregivers were also more dissatisfied with care coordination as compared to DD, MHC and DD & MHC caregivers. Family Impact: ASD caregivers were more likely to have financial burden as compared to DD and MHC, but not DD & MHC caregivers. ASD caregivers were also found to be more likely to have employment burden, as compared to DD, MHC, and DD & MHC caregivers. Time-related burden was also significantly different between the four groups, where ASD caregivers were more likely to have time-related burden as compared to MHC, and DD & MHC caregivers.;Conclusion: ASD caregivers differ significantly in their report of difficulty using services, adequacy of insurance coverage, shared decision making, care coordination, and family impact as compared to DD and MHC caregivers.;Study 2. Data on caregivers of children with ASD was drawn from 2009-2010 National Survey for Children with Special Health Care Needs (N = 3,025) with a representative sample from each state. Two state health policy (Medicaid Income Eligibility & autism mandate as a proxy measure of states' autism health care initiative) and two state health care workforce (Child to Pediatrician Ratio & Special Education Teachers per 1,000 Special Education Students) estimates were taken from publicly available sources. Multilevel regressions were used to model the associations between state contextual characteristics and dependent outcome measures, controlling for state median household income, percentage of children in poverty, percentage of children with developmental disorders, child, and caregiver level characteristics.;Results: The caregivers of children with ASD reported difficulty using services (54.5%), difficulty getting referrals (27.7%), lack of source of care (18.2%), inadequate insurance coverage (31.2%), financial burden (54%), time-related burden (39.5%), and employment burden (35%). The study had mixed findings from multilevel regression: In general, Medicaid income eligibility threshold of ≤100% FPL was associated with lower likelihood of difficulty getting referrals, reporting lack of source of care, and inadequate insurance coverage. Having an autism mandate in the state was associated with greater odds of reporting difficulty using services, lack of source of care, inadequate insurance coverage, but lower likelihood of reporting financial burden. For the state health care workforce, increase in child to pediatrician ratio was associated with increased likelihood of reporting problems with all measures of access. Increase in special education teachers per 1,000 special education students was associated with lower odds of reporting difficulty using services, time .related and employment burden. (Abstract shortened by UMI.).
Vohra, Rini, "Access to Services, Quality of Care, and Family Impact for Caregivers of Children with Autism Spectrum Disorders: A National Perspective Using 2009-2010 Children with Special Health Care Needs (CSHCN) Survey" (2013). Graduate Theses, Dissertations, and Problem Reports. 191.