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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.
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