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Introduction. Care coordination involves organizing patient care activities and sharing information among all of the participants concerned with a patient's care to achieve improved outcomes, a recent national focus. Compared to the national average, a higher percentage of Vermont children are cared for in an office that meets medical home criteria. However, there is limited research on medical home and care coordination for children with special health care needs (CSHCN) in the state of Vermont.

Objectives. The goal of this study was to assess family perceptions, knowledge, and attitudes about how well care coordination is working for Vermont families with CSHCN.

Methods. A paper and an electronic anonymous survey was developed for Vermont families with CSHCN. The surveys were then distributed by Vermont Family Network and the UVMMC Department of Pediatrics. Focus group interviews were also conducted at Vermont Family Network to provide family insight to explain the quantitative data.

Results. 30 participants responded to the survey; only 20 completed it. The overall composite satisfaction score is 54%. This score takes into account 4 questions regarding care coordination satisfaction. Each question was formatted into a numerical value ranging from zero to five, with an overall score of 20 equating to 100% satisfaction.

Discussion. Findings indicate that families with CSHCN are not satisfied with the level of care coordination currently provided. Respondents reported many barriers regarding care coordination, including lack of communication among health care providers, insurance coverage, and lack of support during transitional periods in care. Recommended improvements were identified.


Lisa Maynes, Vermont Family Network

Heather Link, University of Vermont Medical Center


Vermont Family Network


Adolescent Health, Disability and Health, Early and Middle Childhood, Maternal, Infant, and Child Health, Public Health Infrastructure

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This work is licensed under a Creative Commons Attribution-Noncommercial 3.0 License

Analysis of Care Coordination for Children with Special Health Care Needs: A Parent's Perspective