Children with Special Health Care Needs

special-needs-children-main The Maternal & Child Health Bureau describes children with special health care needs as “those children who have or are at risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.” It is estimated that over 15% of children, totaling more than 11 million children, in the US have special health care needs, accounting for about one in five households.

It is likely that increased screening, improved diagnosis, and improved management of chronic conditions allows children to live longer, therefore contributing to increased rates of children diagnosed with special health care needs. However, it is likely that many more children with special health care needs remain unidentified by the health care system for a variety of reasons.

For example, as with many health outcomes, communities of color are likely to experience underreporting and greater barriers in accessing services and health care, and thus face a greater burden from chronic conditions. While researchers have learned a great deal about the experiences of children with special health care needs, it is crucial we gain a deeper understanding about the resources these children and families need to be successful. Currently, some of the most salient issues for families of children with special health care needs are identification and treatment of secondary conditions, access to services, improved coordination of services (medical home), family-centered care, and the mental health of children and their families.

Within the Healthy People 2020 objectives, the following goals under the topic Disability and Health are specifically directed at children with special health care needs:

DH-5 — Increase the proportion of youth with special health care needs whose health care provider has discussed transition planning from pediatric to adult health care
DH-14 — Increase the proportion of children and youth with disabilities who spend at least 80 percent of their time in regular education programs
DH-20 — Increase the proportion of children with disabilities, birth through age 2 years, who receive early intervention services in home or community-based settings

Policy

Within the health care reform movement, “medical home” is being considered as a way to manage the health care of adults with chronic diseases and conditions. For a concise definition of a patient-centered medical home for children with special health care needs, see the framework described by the National Center of Medical Home Initiatives at the American Academy of Pediatrics. The Women’s Policy Center at John Hopkins University has a special project dedicated to the promotion of comprehensive, family-centered systems of care for children with special health care needs and their families; The National Policy Center for Children with Special Health Care Needs is a cooperative agreement between the Maternal and Child Health Bureau, the Health Resources & Services Administration, and the Department of Health & Human Services. In Minnesota, the Minnesota Department of Administration Council on Developmental Disabilities is an excellent resource for information regarding the history of and current legislation affecting people with developmental disabilities and their families.

Research

While much research is still needed to better understand the impact of special health care needs on children and their families, there are a few data sources available to individuals interested in learning more about what we now at present. One resource for data about children with special health care needs and their families is the National Survey of Children with Special Health Care Needs. Conducted every four years, alternating with the National Survey of Children’s Health, the survey’s databank offers national, state, and condition-specific profiles. There are also data available from the National Health Interview Survey on Disability National Health Interview Survey on Disability. Child Stats.gov is a wonderful resource for all data concerning children, with an interactive matrix of health topics and corresponding data sources.

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