Who are Children with Special Health Care Needs?

Children with special health care needs are 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.

The above definition was developed by the Maternal and Children Health Bureau, Division of Services for Children with Special Health Care Needs in collaboration with many experts in child health including parents, and has become widely accepted. This definition includes children with a broad range of conditions or chronic illnesses such as cerebral palsy, developmental delay, ADHD, depression, asthma, sickle cell anemia or cystic fibrosis as well as children who develop a significant medical problem that is expected to last at least twelve months. The Maternal and Child Health Bureau definition helps to identify children based on the impact of their special health need and their need for health and related services, rather than only on their diagnosis. Many children have more than one special health need.

A recent national population based survey estimates that over 9 million  (12.8 percent) children in the United States presently have a special health care need. One in five households include children with special health care needs. Some children with special health care needs require only an accurate diagnosis and routine treatment and monitoring. Other children will need life-sustaining technology, treatment, and medicines throughout their lives. Children with special health needs tend to receive their health care from a combination of private and public financing and delivery systems, and many depend on multiple providers. Almost all children with special health care needs, no matter the severity of their condition, live at home with their parents and brothers and sisters.

Children with special needs above all deserve a health, happy childhood and a chance to grow up to be productive adults. Like all children, they live with their families in towns, cities and rural areas of the United States , going to school, attending worship services, enjoying community events. However, unlike most children, they also have challenging health conditions that usually make their lives and their families’ lives more complicated. Any child, at any time, could develop a disability or chronic health condition.