Providing and organizing preventive, primary and specialty services for Children with Special Health Care Needs (CSHCN) is a core public health function for the Florida Department of Health (DOH). It is a core educational function for the Florida Department of Education for school age children and a core educational DOH function for children age 0 to 3. The federal and state role has steadily increased and numerous tools are available to states including:

• 1935 - Title V of the Social Security Act



• 1965 - Title XIX of the Social Security Act (Medicaid) for low income children and as amended in 1967 with the Early Periodic, Screening Diagnosis and Treatment Program for children



• 1974 - Title XVI Supplemental Security Income (SSI) childhood disability program for children 0 to 21



• 1975 - The Education for All Handicapped Children Act, now Individuals for Disability Education Act (IDEA)



• 1986 - PL 99-457 extended education to 3 to 5-year-olds with options for states to serve 0 to 3-year-olds



• 1998 - Title XXI provided health insurance funds for children through age 18 below 200 percent of poverty

The American Pediatric Association identifies children with special health care needs as those that

“have or are at increased risk for a chronic, physical, developmental, behavioral or emotional condition who also require health and related services of a type or amount beyond that required by children generally.”
(Pediatrics, Volume 102, Nov/July 1998)

Parents of children with special health care needs have few mentors to guide them. Some give up jobs or work part time; some move to be near needed health care or educational services in order to care for their child. They become specialists, providing appropriate therapies and medications. Those who live in rural areas must travel long distances to get the special services their child needs. The experience is often isolating and the responsibilities leave little time to concentrate on relationships between and with spouses and siblings. So very reliant on outside help, a major requirement is living with uncertainty. ^{(7, 8)}    Families without financial resources or an education have special risks that are often overwhelming.

Family Case Example: Transportation and Coordination of Services for Rural Families. A family's child was removed from their home and placed into medical foster care because the family could not get their child to medical services: all agree that this is a loving and bonded family. The family has three children with special needs, one more critical than the others. A trip to the doctor's office using available Medicaid transportation — begins three hours before the appointment, the family again waits to be picked up after the appointment and another three hours to return home. This family cannot schedule two appointments on the same day and expect to show up for both. Providing appropriate hands on care and getting three children to all of their appointments and therapies cannot be done from where they live with available transportation. The most critical child was placed in Medical Foster Care screaming and crying. His CMS nurse made it back to her office before she cried too. ⁽⁹⁾