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.

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    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.
    Maternal and Child Health Journal 06/2013; 18(3). DOI:10.1007/s10995-013-1292-z · 2.24 Impact Factor
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    ABSTRACT: Importance The economic effect of autism spectrum disorders (ASDs) on individuals with the disorder, their families, and society as a whole is poorly understood and has not been updated in light of recent findings.Objective To update estimates of age-specific, direct, indirect, and lifetime societal economic costs, including new findings on indirect costs, such as individual and parental productivity costs, associated with ASDs.Design, Setting, and Participants A literature review was conducted of US and UK studies on individuals with ASDs and their families in October 2013 using the following keywords: age, autism spectrum disorder, prevalence, accommodation, special education, productivity loss, employment, costs, and economics. Current data on prevalence, level of functioning, and place of residence were combined with mean annual costs of services and support, opportunity costs, and productivity losses of individuals with ASDs with or without intellectual disability.Exposure Presence of ASDs.Main Outcomes and Measures Mean annual medical, nonmedical, and indirect economic costs and lifetime costs were measured for individuals with ASDs separately for individuals with and without intellectual disability in the United States and the United Kingdom.Results The cost of supporting an individual with an ASD and intellectual disability during his or her lifespan was $2.4 million in the United States and £1.5 million (US $2.2 million) in the United Kingdom. The cost of supporting an individual with an ASD without intellectual disability was $1.4 million in the United States and £0.92 million (US $1.4 million) in the United Kingdom. The largest cost components for children were special education services and parental productivity loss. During adulthood, residential care or supportive living accommodation and individual productivity loss contributed the highest costs. Medical costs were much higher for adults than for children.Conclusions and Relevance The substantial direct and indirect economic effect of ASDs emphasizes the need to continue to search for effective interventions that make best use of scarce societal resources. The distribution of economic effect across many different service systems raises questions about coordination of services and sectors. The enormous effect on families also warrants policy attention.
    06/2014; 168(8). DOI:10.1001/jamapediatrics.2014.210
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    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).
    Families Systems & Health 06/2014; 32(3). DOI:10.1037/a0037180 · 1.13 Impact Factor
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