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The Relationship Between the Medical Home and Unmet Needs for Children with Autism Spectrum Disorders

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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.

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Acknowledgments

This study was developed and implemented with funding from the US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Division of Services for Children with Special Health Needs, Grant number H6MMC11059. We also wish to thank the families who gave generously of their time to contribute to advances in care for individuals with ASD.

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Authors and Affiliations

  1. Department of Health Psychology, University of Missouri, 421 Lewis Hall, Columbia, MO, 65211, USA

    Janet E. Farmer

  2. Thompson Center for Autism and Neurodevelopmental Disorders, University of Missouri, Columbia, MO, USA

    Mary J. Clark & Wayne A. Mayfield

  3. Department of Health Sciences, University of Missouri, Columbia, MO, USA

    Nancy Cheak-Zamora

  4. Department of Medical Informatics, Kennedy Krieger Institute, Baltimore, MD, USA

    Alison R. Marvin, J. Kiely Law & Paul A. Law

  5. Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, USA

    J. Kiely Law & Paul A. Law

Authors
  1. Janet E. Farmer
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  2. Mary J. Clark
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  3. Wayne A. Mayfield
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  4. Nancy Cheak-Zamora
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  5. Alison R. Marvin
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  6. J. Kiely Law
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  7. Paul A. Law
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Correspondence to Janet E. Farmer.

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Farmer, J.E., Clark, M.J., Mayfield, W.A. et al. The Relationship Between the Medical Home and Unmet Needs for Children with Autism Spectrum Disorders. Matern Child Health J 18, 672–680 (2014). https://doi.org/10.1007/s10995-013-1292-z

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  • DOI: https://doi.org/10.1007/s10995-013-1292-z

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