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Objectives: Care coordination and the medical home may ensure access to specialty care. Children with special health care needs (CSHCN) have higher rates of specialty care use and unmet need compared with the general pediatric population. We hypothesized that care coordination, regardless of whether it was provided in a medical home, would decrease unmet specialty care needs among CSHCN and that the effect of care coordination would be greater among low-income families., Methods: Secondary data analysis of participants in the 2009–2010 National Survey of CSHCN who reported unmet specialty care needs and for whom care coordination and medical home status could be determined (n = 18 905). Logistic regression models explored the association of unmet need with care coordination and medical home status adjusting for household income., Results: Approximately 9% of CSHCN reported having unmet specialty care needs. Care coordination was associated with reduced odds of unmet specialty care need (without a medical home, odds ratio: 0.63, 95% confidence interval: 0.47–0.86; within a medical home, odds ratio: 0.22, 95% confidence interval: 0.16–0.29) with a greater reduction among those receiving care coordination within a medical home versus those receiving care coordination without a medical home. We did not find differences in the impact of care coordination by percentage of the federal poverty level., Conclusions: Care coordination is associated with family report of decreased unmet specialty care needs among CSHCN independent of household income. The effect of care coordination is greater when care is received in a medical home.

Objective: To examine current US performance on transition from pediatric to adult health care and discuss strategies for improvement., Methods: The 2009-2010 National Survey of Children with Special Health Care Needs is a nationally representative sample with 17 114 parent respondents who have youth with special health care needs (YSHCN) ages 12 and 18. They are asked about transition to an adult provider, changing health care needs, increasing responsibility for health care needs, and maintaining insurance coverage. We analyzed the association of selected characteristics with successful transition preparation., Results: Overall, 40% of YSHCN meet the national transition core outcome. Several factors are associated with transition preparation, including female gender; younger age; white race; non-Hispanic ethnicity; income ≥400% of poverty; little or no impact of condition on activities; having a condition other than an emotional, behavioral, or developmental condition; having a medical home; and being privately insured., Conclusions: Most YSHCN are not receiving needed transition preparation. Although most providers are encouraging YSHCN to assume responsibility for their own health, far fewer are discussing transfer to an adult provider and insurance continuity. Although changes in sample design limit trend analysis, there have been no discernible improvements since this transition outcome was measured in the 2005-2006 National Survey of Children with Special Health Care Needs. The 2011 release of the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians clinical recommendations on transition, new transition tools, and the spread of medical home should stimulate future improvements in transition performance.

Objective: To measure the co-morbidities associated with Down syndrome compared with those in other children with special health care needs (CSHCN). Additionally, to examine reported access to care, family impact, and unmet needs for children with Down syndrome compared with other CSHCN., Study Design: An analysis was conducted on the nationally representative 2005 to 2006 National Survey of Children with Special Health Care Needs. Bivariate analyses compared children with Down syndrome with all other CSHCN. Multivariate analyses examined the role of demographic, socioeconomic, and medical factors on measures of care receipt and family impact., Results: An estimated 98,000 CSHCN have Down syndrome nationally. Compared with other CSHCN, children with Down syndrome had a greater number of co-morbid conditions, were more likely to have unmet needs, faced greater family impacts, and were less likely to have access to a medical home. These differences become more pronounced for children without insurance and from low socioeconomic status families., Conclusions: Children with Down syndrome disproportionately face greater disease burden, more negatively pronounced family impacts, and greater unmet needs than other CSHCN. Promoting medical homes at the practice level and use of those services by children with Down syndrome and other CSHCN may help mitigate these family impacts., (Copyright © 2011 Mosby, Inc. All rights reserved.)

Family-centered, coordinated, comprehensive, and culturally competent care for children and youth with special healthcare needs is a national priority. Access to a primary care medical home is a US Maternal and Child Health Bureau performance measure. Most primary care practices lack methods by which to partner with families and improve care. Gaps remain in the number of children with access to a high-quality medical home. The Medical Home Index and Medical Home Family Index and Survey resulting from 10 pilot practices reveal improvements in practice capacity and subsequently in child and family outcomes.

Families who raise children and youth with special health care needs deserve a medical home. They expect a team approach to health care, with coordination across multiple services and settings. Children, youth, and families benefit from the organization of critical information into written care summaries and action plans. If primary care pediatricians, family physicians, and internists are to achieve optimal health care quality and improvement of existing health care delivery, care coordination will be an essential contributing process to their team approach. Several national health policy recommendations identify care coordination as a cross-cutting intervention to fill the gap between what exists and what is needed in health care today. A practice-based care-coordination model, including a definition and vision for care, a framework of structures and processes, and a position description with specific competencies, is needed. Improvement methodology provides an effective means for health care teams to implement and evaluate practice-based care coordination within their medical home. The improvement approach and model must be flexibly applied to have utility across diverse health care organizations. A medical home team approach, with fully developed practice-based care-coordination services, will enhance health and cost outcomes for children, youth, and families and heighten the professional satisfaction of those delivering health care.

Families and professionals agree that children and adolescents need access to community-based medical homes. This is especially true for children with special health care needs (CSHCN). Most primary care practices are designed for children's routine preventive and acute care needs. CSHCN benefit from care that is integrated with well-child and acute care; coordinated and actively co-managed with specialists, therapists, and educators; and offered in a planned, anticipatory manner. As the primary caregiver and decision maker, families need to be supported in a culturally effective way. Families want community resources that are integrated with care processes. Primary care practices that serve CSHCN require a practical and effective improvement method to become fully realized medical homes. A change method, which blends improvement strategies with progressive measurement, must be perceived by practices as practical and helpful, and it must be supported. The Center for Medical Home Improvement has developed and tested an effective model of medical home improvement and tools to measure the status of a practice and its progress of change.

Objective: The Medical Home is a clinical practice concept that sets new standards for pediatric primary care. This study describes the development and validation of a tool to measure the Medical Home., Methodology: The Medical Home Index (MHI) consists of 25 themes arranged among 6 domains of primary care office activity. A national panel of experts on the Medical Home reviewed a prototype of the instrument. Pediatric primary care offices completed the MHI and participated in 90-minute on-site interviews with two of the authors (J.W.M., K.S.). The study examined interrater reliability between the 2 project staff and between the practices and project staff and the internal consistency of MHI domains and themes., Results: On a 100-point scale, 43 practices demonstrated a range of MHI summary scores from 18.9 to 75.4, with a mean of 43.9. Kappa coefficients of interrater reliability between two Center for Medical Home Improvement project staff were above.50 for all 25 themes. Kappa scores comparing each staff member and the practice sites' self-assessment found 80% of the themes at.65 or better for one interviewer (J.W.M.) and 60% of the themes at.65 or better for the second interviewer (K.S.). Intraclass correlation coefficients between the summary scores of the interviewers were.98 and between the scores of the two interviewers and the scores of the practices was.97. The internal consistency reliability standardized alpha coefficients across the 6 domains of the MHI ranged from.81 to.91, and the overall standardized alpha coefficient was.96., Conclusions: In the sample of practices studied, the MHI was an internally consistent instrument with acceptable reliability and validity for pediatric primary care practices to assess their implementation of the Medical Home concept. Further work is needed to study its correlation with other process and outcome measures and its performance in a wider range of practices.

This article characterizes the critical role of the primary care physician in the identification, initial evaluation, and management of children with developmental disabilities. Problems of definition and epidemiology are reviewed and linked to issues of referral and eligibility for services and supports. Developmental screening methods afford opportunities for early identification, whereas chronic condition management in primary care defines a more explicit role for the pediatric primary care provider., (Copyright 1999 Wiley-Liss, Inc.)