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

Abstract

PURPOSE The main objective of the study was to examine health care disparities for children with autism spectrum disorders utilizing two studies. Study 1: To examine the caregiver perceived access to services, quality of care, and family impact for children with Autism Spectrum Disorders (ASD), as compared to caregivers of children with other developmental disabilities (DD) and mental health conditions (MHC). Study 2: To examine the impact of state health policies (Medicaid Income Eligibility and Autism Mandate) and Workforce (Child to Pediatrician Ratio and Number of Special Education Teachers) on perceived access to services and family impact for caregivers of children with ASD. METHOD Study Design: Cross-sectional survey Data: National Survey of Children with Special Health Care Needs 2009-2010, a nationally representative data for US civilian non-institutionalized population with children aged 0-17 years. Outcome Measures: Access to care was measured as: difficulty using services, difficulty getting referrals, lack of usual source of care, and inadequate insurance coverage. Quality of care was assessed as problems reported with: care coordination, lack of shared decision making, and no routine screening. Family impact was measured via: financial, employment, and time related burden. Study 1 Study sample: All the children in the age group of 3-17 years with a caregiver reported current diagnosis of ASD, DD without ASD, MHC without ASD, or DD & MHC without ASD were identified (N = 18,702). Methods: 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 &…