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Unmet Need among Children with Special Health Care Needs in Massachusetts

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Abstract

Objectives We partnered with a Massachusetts family workgroup to analyze state level data that would be most useful to consumers and advocates in Massachusetts. Methods Massachusetts’ and US data from the 2001 National Survey of Children with Special Health Care Needs (NSCSHCN) were analyzed. We examined types of need and prevalence of unmet need for all CSHCN and for more severely affected CSHCN. We also correlated unmet need to child and family characteristics using multivariate logistic regression. Results In Massachusetts, 17% of CSHCN and 37% of children more severely affected did not receive needed care. CSHCN who were uninsured anytime during the previous year were nearly 5 times more likely to experience an unmet need (OR = 4.95, CI: 1.69–14.51). Children with more functional limitations (OR = 3.15; CI: 1.59–6.24) and unstable health care needs (OR = 3.26; CI: 1.33–8.00) were also more likely to experience an unmet need. Receiving coordinated care in a medical home (OR = 0.46; CI: 0.23–0.90) was associated with reduced reports of unmet need. Conclusions With input from families of CSHCN, researchers can direct their analyses to answering the questions and concerns most meaningful to families. We estimate that 1 in 6 CSHCN in Massachusetts did not receive needed care, with more than 1 in 3 CSHCN with a more severe condition experiencing an unmet need. Enabling factors were predictors of unmet need suggesting solutions such as expanding insurance coverage and improving services systems for CSHCN.

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Acknowledgments

Massachusetts Consortium for Children with Special Health Care Needs Family Participation Workgroup for their enthusiasm and contributions to this project and Nancy Wilber, EdD, Massachusetts Department of Public Health for information regarding the service systems in Massachusetts for children with special health care needs. Source of Support: The Deborah Munroe Noonan Memorial Fund.

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Authors and Affiliations

  1. Center for Child and Adolescent Health Policy, Massachusetts General Hospital for Children, 50 Staniford Street, Suite 901, Boston, MA, 02114, USA

    Kristen S. Hill & Karen A. Kuhlthau

  2. Massachusetts Consortium for Children with Special Health Care Needs, New England SERVE, Boston, MA, USA

    Linda C. Freeman

  3. Department of Biostatistics and Epidemiology, School of Public Health, University of Massachusetts, Amherst, MA, USA

    Recai M. Yucel

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  1. Kristen S. Hill
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  2. Linda C. Freeman
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  4. Karen A. Kuhlthau
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Correspondence to Kristen S. Hill.

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Hill, K.S., Freeman, L.C., Yucel, R.M. et al. Unmet Need among Children with Special Health Care Needs in Massachusetts. Matern Child Health J 12, 650–661 (2008). https://doi.org/10.1007/s10995-007-0283-3

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  • DOI: https://doi.org/10.1007/s10995-007-0283-3

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