title: Associations of family characteristics with perceptions of care among parents of children with autism.
abstract: BACKGROUND
  Although autism spectrum disorder (ASD) is an increasingly common chronic disability, primary care provider (PCPs) report deficits in providing primary care for children with ASD, and parents report lapses in receipt of medical home services. In this study, we describe parental experiences with specific medical home components for their children with ASD.
  
  
  METHODS
  We analysed data from all children within the National Survey of Children with Special Health Care Needs database with ASD and a usual place for care (n = 2859). We evaluated the receipt of core medical home components: accessible, comprehensive, coordinated, family centred and compassionate and culturally sensitive care.
  
  
  RESULTS
  Children were mean age 10.1 years, and respondents were 75% mothers and 95% reported having a primary care provider (PCP). Seventy-one percent reported care to be usually comprehensive, over three-fourths of respondents reported care to be family centred and compassionate and 87% reported care to be culturally sensitive. Of the parents who reported a need for care coordination (n = 1049), only 14% of parents reported usually getting the help they needed. More educated, English-speaking, non-Hispanic White mothers of older children supported by private insurance were more likely to report never getting as much help coordinating care as desired. Coordination with education services are especially important for children with ASD, yet 27% of parents reported dissatisfaction with PCPs' communication with schools or early intervention.
  
  
  CONCLUSIONS
  Although parents report a high level of access to PCPs and places for care as well as receiving most core components of the medical home, care coordination activities are lacking for children with ASD. More resourced families are particularly likely to report unmet needs.
authors.affiliation: Section of Developmental and Behavioral Pediatrics, Department of Pediatrics, University of Chicago, Chicago, IL, USA.
authors.forename: S A
authors.initials: SA
authors.lastname: Sobotka
authors.affiliation: Advocate Children's Hospital-Park Ridge, Park Ridge, IL, USA.
authors.forename: A
authors.initials: A
authors.lastname: Francis
authors.affiliation: Section of Developmental and Behavioral Pediatrics, Department of Pediatrics, University of Chicago, Chicago, IL, USA.
authors.forename: K
authors.initials: K
authors.lastname: Vander Ploeg Booth
mesh_terms: D000067877:Autism Spectrum Disorder / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D002648:Child; D002662:Child Health Services / Q000191:economics / Q000592:standards*; D003430:Cross-Sectional Studies; D005191:Family Characteristics; D005260:Female; D019538:Health Care Surveys; D006297:Health Services Accessibility / Q000191:economics / Q000592:standards*; D006801:Humans; D008297:Male; D020380:Needs Assessment; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D012938:Social Perception; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D014481:United States / Q000453:epidemiology
keywords: autism spectrum disorder; care coordination; medical home