Although the obesity epidemic appears to have affected all segments of the U.S. population,1 its impact on children with special health care needs (SHCN) has received little attention. “Children with special health care needs” is a term used in the U.S. to describe children who come to the attention of health care providers and policy makers because they need different services and supports than other children. Government, at both the federal and state levels, has long felt a particular responsibility for safeguarding the health of children with special needs. The definition “children with special health care needs,” in fact, was developed by a work group established by the U.S. Maternal and Child Health Bureau (MCHB) to assist states in their efforts to develop community systems of services for children with complex medical and behavioral conditions. According to the MCHB definition:
The National Survey of Children with Special Health Care Needs, which followed, was the first effort to determine the prevalence of children with SHCH nationwide using a commonly accepted definition (the MCHB definition). This survey estimated that 12.8% of the nation’s children under age eighteen, or about 9.4 million children, have a special health care need.3Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.2
Remarkable advances in health care quality and access, and a dramatic broadening of societal opportunities for persons with special needs, have resulted in a marked increase in the number of children with SHCN who live close to normal life spans, and who are in relatively “good health,” despite having an on-going medical condition. Ironically, this remarkable achievement renders this population newly susceptible to secondary conditions associated both with adulthood and with their primary conditions as they grow older. Childhood obesity, because it tends to track into adulthood and is itself a risk factor for the most prevalent chronic diseases, may represent a particular threat to the long-term health of many children with SHCN. Maintenance of a healthy weight in this population is of particular importance because an additional chronic condition, such as type 2 diabetes, may threaten the ability to live independently, or may require a more supervised environment, due to additional demands that accompany disease management. Immediate consequences of excess weight may also make it more difficult for some children to maintain function; for example children with muscular dystrophy who put on excess weight find movement more difficult. Also, because obesity continues to be a highly stigmatized condition,4 it represents another characteristic that identifies a child as “different” from their peers. Although the extent of obesity among children with SHCN as a group is unknown, it is likely that many children with medical conditions or disabilities that affect their activity levels or food intake are at heightened risk for overweight and obesity. (Underweight is a problem for some children as well – it may persist or resolve.) Presumably, children with SHCN are included in prevalence estimates obtained from nationally representative surveys, such as the National Health and Nutrition Examination Surveys and Youth Risk Behavior Survey, but, as discussed below, this assumption has yet to be verified. Information about risk factors associated with overweight among children with SHCN, including factors that may prevent obesity, is particularly lacking.
The aim of this review is to bring children with special health care needs into the national discussion of the childhood obesity epidemic. In doing so, we seek to understand its impact and to suggest responses to this new health threat facing a group of children who may be particularly vulnerable but have yet to be targeted in widespread efforts to address childhood obesity. Children with SHCN have been identified by the MCHB, state governments, and the American Academy of Pediatrics, among others, as constituting a distinct group of children in need of a coordinated family-centered approach to health care.5 Advocacy efforts and the formulation of health policies at the federal and state level have fostered a network of health services and supports for children with SHCN. Families played a major role in stimulating these reforms and represent a logical and organized constituency with respect to the health promotion needs of these children. The existence of this support network and the policies that sustain it provide an unusual opportunity and also a venue from which to address obesity in this one group of the nation’s children. We approach our review with a social-ecological framework – considering these children and the challenges they face with respect to the maintenance of a healthy weight in the context of their families, schools, health care systems and communities.
This review begins with a profile of children with SHCN. This is followed by an examination of what is known about the prevalence of childhood overweight and obesity, first in the general population, and then among children with SHCN. The main body of the review is devoted to an examination, using a social-ecological framework, of how different spheres of influence affect obesity risk factors, primarily in children with SHCN, but referencing the experiences of children in the general population. The review concludes with a discussion including policy recommendations in regard to measures that could help prevent overweight and obesity in this group of children.