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 Medical Home Access among Children with Special Health Care Needs: Findings from the 2011-12 National Survey of Children’s Health

By Reem M. Ghandour, DrPH, MPA

Michael D. Kogan, PhD

Jessica J. Jones, MPH

Office of Epidemiology and Research, Maternal and Child Health Bureau, Health Resources and Services Administration

For two decades, the American Academy of Pediatrics (AAP), MCHB at HRSA, service providers, policymakers, and advocates have championed the medical home model to improve the delivery of children’s health care. This model is characterized by the compassionate delivery of easily-accessible, comprehensive, continuous, culturally effective, coordinated medical services in partnership with patients and families. Research has shown that children fare best with respect to the accessibility, timeliness and quality of health care when provided in such a setting. Medical home access for children with and without special health care needs is monitored by MCHB through the National Survey of Children’s Health (NSCH) and the National Survey of Children with Special Health Care Needs.

According to the most recent data from the 2011-12 NSCH, 54.4 percent of children were reported to receive care in a medical home. However, rates of medical home access varied by special health care need status, with less than half (46.8 percent) of CSHCN reported to have a medical home compared to 56.3 percent of children without such needs. These rates reflect parent-report of five measurable components of medical home: personal health care provider; usual source of sick and well care; receipt of family-centered care; referrals for doctors or health services if needed; and receipt of care coordination if more than one service was used in the past year.1 In 2011-12, CSHCN were slightly more likely to have a personal health care provider or usual place for sick and routine care (approximately 93 percent) compared to 89.7 percent and 91.0 percent, respectively, of children without such needs. In contrast, sizable disparities were observed for both receipt of needed referrals and care coordination. Compared to 18.5 percent of children without special health care needs, nearly one-quarter (24.5 percent) of CSHCN reported having difficulties getting needed referrals and nearly half (43.6 percent) reported not receiving effective care coordination compared to 28.6 percent of children without such needs who also used more than one health care service in the past year. Disparities in the receipt of care coordination were more pronounced when parents’ perceived need was considered regardless of the number of services used: nearly one-third of CSHCN lacked care coordination compared to less than 10 percent of children without special health care needs. No significant differences were observed for the receipt of family-centered care by special needs status.

Among CSHCN, medical home access varied by geographic location ranging from more than 60 percent to less than 40 percent. Regional differences also were observed with the highest overall rate of medical home access among CSHCN observed in Public Health Region VII (55.5 percent) while the lowest was observed in Region IX (36.8 percent).

Receipt of care in a medical home is a critical measure of health care quality for all children and CSHCN, in particular, as evidenced by its inclusion among the nation’s 10-year goals for improving the health of all Americans, Healthy People 2020, and ongoing inclusion in the MCHB Core Outcomes for CSHCN. These latest data indicate that disparities among children by special health care need status have changed little since 2007 when 49.8 percent of CSHCN and 59.4 percent of children without such needs, respectively, had medical home access. Recent estimates for individual components of medical home suggest that this disparity is driven largely by differences in referral access and receipt of care coordination. Disparities in the latter should be of particular interest to program managers, policymakers, and service providers. Research suggests that care coordination may hold the capacity to impact multiple outcomes among CSHCN ranging from access to care to family burden to patient and provider satisfaction. Ongoing surveillance of medical home access overall, and receipt of specific components at the state and national level, is critical to understanding opportunities to improve systems of care for U.S. children and CSHCN. National, regional and state-level data for medical home and related components are available at


1 More information on the measurement of medical home and these components is available at: