Children with special health care needs include those with chronic illnesses (e.g., asthma, diabetes, sickle cell anemia), physical disabilities (e.g., cerebral palsy, spina bifida), and developmental/emotional disabilities (e.g., autism, Down syndrome). Historically, children have been classified as having special health care needs based on whether they have been diagnosed with specific conditions. In the past decade or so, it has been recognized that this classification system is flawed and may exclude children with rare, undiagnosed, or difficult to define conditions. In 1998, a working group established by the United States’ Maternal and Child Health Bureau’s Division of Services for Children with Special Health Care Needs published a new definition of children with special health care needs that was designed to be more inclusive of all children currently needing or who are at risk for needing special health or related services:
Children 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.
This new definition was created to help guide program planning for these children and their families. By not depending on specific diagnoses to classify children, the definition implicitly recognizes that children and families affected by different conditions have many common experiences. For example, many of these families face frequent disruptions of family and social activities and increased financial obligations due to their increased need for a wide array of community and professional services. These services may include frequent physician visits, allied health services, medical or orthopedic devices, and individualized education plans.
In addition to the above common experiences, families of children with special health care needs often have increased challenges associated with optimizing and maintaining the child’s emotional development and self-concept. Due to the need for specialized services, or because of physical or academic limitations, children with special health care needs may feel stigmatized or simply “different” from their peers, which may in turn affect their emotional health and well-being. As advances in health care have allowed children with special health care needs to live longer and fuller lives, attention has shifted to focus on understanding their unique developmental and emotional needs.
However, the impact of an illness or disability on a child’s cognitive, social, and emotional development varies over time as the child’s developmental level changes. In addition, the implications of the illness/disability are different depending on the child’s developmental level at its onset and the limitations of the disorder at each level of development.
Professionals who work with children with special health needs must keep these changing developmental needs in mind. They must also understand the effects (both negative and positive) of the child’s condition on the family system and how these in turn can affect the child’s development. The way that medical treatment, allied health care, and other necessary programs are delivered can have lasting effects on the family’s stress associated with the child’s condition. Supportive care designed to ameliorate the negative effects of the condition can assist the family in managing the child’s care and the burdens associated with it. Support groups for families, parent and child educational training about the condition, home care services, respite care, and other support services can prevent the accumulation of stress that can overwhelm a family’s resources or hinder the child’s development.
References:
- Batshaw, (1991). Your child has a disability: A complete sourcebook of daily and medical care. New York: Little, Brown.
- Family Voices, , http://www.familyvoices.org
- Hobbs, , Perrin, J., & Ireys, H. (1985). Chronically ill children and their families. San Francisco: Jossey-Bass. McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W., et al. (1998). A new definition of children with special health care needs [Commentary]. Pediatrics, 102, 137–140.
- National Center for Education in Maternal and Child Health, Georgetown University. Maternal and Child Health Library. (2004). Knowledge path: Children and adolescents with special health care Retrieved from http://www .mchlibrary.info/knowledgePaths/kp_CSHCN.html
- Perrin, E., Newacheck, P., Pless, I. B., Drotar, D., Gortmaker, S. , Leventhal, J., et al. (1993). Issues involved in the definition and classification of chronic health conditions. Pediatrics, 91, 787–793.
- Thompson, R., Jr., & Gustafson, K. (1996). Adaptation to chronic childhood illness. Washington, DC: American Psychological