This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3–17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009–2010 National Survey of Children with Special Health Care Needs was utilized to examine the association between child’s special needs condition and three outcomes (N = 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of shared decision making, and no routine screening), and family impact (financial, employment, and time-related burden). Multivariate logistic regressions were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions. Caregivers of children with autism spectrum disorders were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both [emphasis added]
From the conclusion:
Based on our study findings, one can conclude that caregivers of children with ASDs face significant barriers in access to services and face adverse family impact. In addition, children with ASDs also receive poor quality of care compared to caregivers of other special needs conditions (DDs and MHCs [developmental disabilities and mental health conditions] ). Our findings highlight that children with ASDs form a vulnerable population within the group of DDs that may require greater provider and caregiver attention as compared to children with DDs and MHCs. Our findings also suggest that caregivers of children with ASDs may require services and care that extend beyond that provided by the current health-care system. Public policies and state-level programs are needed to reduce the deficits in health-care services for children with ASDs.