Autism and Pediatric Practice: Toward a Medical Home

Division of Neurodevelopmental and Behavioral Pediatrics, Golisano Children's Hospital, University of Rochester School of Medicine and Dentistry, Box 671, 601 Elmwood Avenue, Rochester, NY 14642, USA.
Journal of Autism and Developmental Disorders (Impact Factor: 3.06). 03/2012; 42(6):1156-64. DOI: 10.1007/s10803-012-1474-3
Source: PubMed


The pediatrician sees a child for 11 well child visits by their third birthday. The provision of continuous primary care supports development of trust with parents, provides opportunity for screening and surveillance of autism spectrum disorders (ASD), allows monitoring the progress of children requiring therapy, and a framework to support and educate families. Families of children with ASD are less likely to report that they receive care in a Medical Home, a practice providing coordinated, accessible, continuous, culturally competent care. They report less access to specialty and family focused care compared to other children with special health care needs. It is a major challenge to identify and effect the solutions necessary to bring Medical Home care to all children with ASD.

8 Reads
  • [Show abstract] [Hide abstract]
    ABSTRACT: The purpose of this study was to examine the relationship between having access to a medical home and unmet needs for specialty care services for children with autism spectrum disorders (ASD). Parents of children enrolled in a national autism registry were invited to complete an online Access to Care Questionnaire. The resulting sample consisted of 371 parents-child dyads. Bivariate and hierarchical regression analyses were conducted to determine whether having a medical home was associated with the number of unmet needs for specialty care. Less than one in five children with ASD had a medical home (18.9 %). Nearly all parents reported that their child had a personal doctor or nurse as well as a usual source of care, but less than one-third received coordinated care (29.9 %) and less than one-half received family-centered care (47.1 %). Many children had unmet needs (63 %), and the highest unmet need was for behavioral therapy. Having a medical home was associated with fewer unmet specialty care needs, even after demographic, child and family characteristics were taken into account. Children with ASD who have a medical home are more likely to have adequate access to needed services. Unfortunately, relatively few children have a medical home that includes family-centered and coordinated care. Enhancements in the delivery of primary care for children with ASD may make a real difference in access to needed specialty care services, potentially improving child and family outcomes.
    No preview · Article · Jun 2013 · Maternal and Child Health Journal
  • [Show abstract] [Hide abstract]
    ABSTRACT: Individuals with Autism Spectrum Disorder present with unique characteristics, and the interventions designed to address associated challenging behaviors must be highly individualized to best meet their needs and those of their families. This article reviews systems of care to support the child, adolescent, or adult with Autism Spectrum Disorder and/or Intellectual Disability. The review describes mental health/behavioral health services, Intellectual Disability and other support systems, and the systems involved in a child and adolescent's life and transition to adulthood. The types of systems and services, as well as barriers, are delineated with a brief listing of Web sites and references.
    No preview · Article · Jan 2014 · Child and adolescent psychiatric clinics of North America
  • [Show abstract] [Hide abstract]
    ABSTRACT: Parents of adolescents with autism spectrum disorder (ASD) experience the challenges of navigating the health care system, locating information about ASD, lacking an understanding of prescribed medications, and experiencing minimal social support from health care providers. The purpose of this phenomenological study was to describe the experiences of parents who manage the health needs of an adolescent with ASD. Qualitative interviews were conducted at a university setting with 12 parents of 10 adolescents with ASD residing in Central Virginia. Data were analyzed using Moustakas' method in which the phenomenologist asks the following questions: What are the individual's experiences and in what context did they experience them? This study maximized credibility using 3 strategies: prolonged engagement, peer debriefing, and member checking. "Parents needing assistance" emerged as the essence of the parents' experiences. Four themes representing the essential challenging elements of the parents' experiences included concern with medications, frustrations with health care services, recognizing secondary health issues, and the need for resources and services. Findings of the current study revealed key factors to be considered in the development and delivery of health care for adolescents with ASD. These include creating and planning interventions for parents, sharing information about resources and services, and collaborating with others in the health care field. Additional research, both qualitative and quantitative, is needed to understand how parents and adolescents with ASD experience this transitional period. (PsycINFO Database Record (c) 2014 APA, all rights reserved).
    No preview · Article · Jun 2014 · Families Systems & Health
Show more