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Unmet Need and Problems Accessing Specialty Medical and Related Services Among Children with Special Health Care Needs

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Objectives: To extend what is known about parent reports of their child's need for specialty medical and related services, unmet need, and specific types of access problems among children with special health care needs (CSHCN). Methods: Using data from a 1998–1999 20-state survey of families of CSHCN, we examined differences in parent report of need for services by child characteristics, investigated parent report of unmet need and access problems by service area and number of services needed, and estimated the likelihood of four access problems and unmet need by child, family, and health insurance characteristics. Results: Overall, the sample children had numerous service needs, although the prevalence of need varied by service type and child characteristics. Reports of unmet need were greater for older children and for children with multiple service needs, unstable health care needs or a behavioral health condition, parents who were in poor health or had more than a high school education, and families whose insurance coverage was inconsistent or lacked a secondary plan. Reports of access problems were greatest for mental health and home health services. The two most prevalent access problems were finding a skilled provider and getting enough visits. Conclusions: The results underscore the importance of finding new ways to link children with behavioral health problems to mental health services, implementing coordinated care and the other core dimensions of the medical home concept, increasing the number of specialty pediatricians and home health providers, and expanding coverage for a wider range of mental health services.

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Notes

  1. There were a total of 30 children (1.4%) under 1 year of age in the sample. Since the survey questions consistently reference the past year as the time frame of interest, parents of these children had a shorter period of time to experience difficulties than did the rest of the sample. Parents of infants, however, still reported access problems and unmet needs. The number of respondents reporting any of the access problems or reporting an unmet need varied from 2 (6.7%) to 6 (20.0%). Therefore, we included children less than 1 year of age in the analysis.

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ACKNOWLEDGMENTS

This study was supported by the David and Lucile Packard Foundation, the Jack E. and Zella B. Butler Foundation, and the U.S. Bureau of Maternal and Child Health, Division of Services for Children with Special Health Care Needs. Support for the preparation of this manuscript was provided by the Consortium for Children and Youth with Disabilities and Special Health Care Needs, a National Rehabilitation Research and Training Center funded by Grant H133B001200 from the National Institute on Disability Research and Rehabilitation of the U.S. Department of Education. We gratefully acknowledge Deborah Garnick, Marty Wyngaarden Krauss, and Dotty Robison for their helpful suggestions on earlier versions of this manuscript and Jane Lang for help with manuscript preparation.

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  1. Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts, USA

    Marji Erickson Warfield PhD & Stephen Gulley MSW

  2. Heller School for Social Policy and Management, Brandeis University, MS 035, P.O. Box 549110, Waltham, MA, 02454-9110, USA

    Marji Erickson Warfield PhD

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  1. Marji Erickson Warfield PhD
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Correspondence to Marji Erickson Warfield PhD.

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Warfield, M.E., Gulley, S. Unmet Need and Problems Accessing Specialty Medical and Related Services Among Children with Special Health Care Needs. Matern Child Health J 10, 201–216 (2006). https://doi.org/10.1007/s10995-005-0041-3

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  • DOI: https://doi.org/10.1007/s10995-005-0041-3

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