National Institutes of Health (NIH) Their category ‘Child & Teen Health’ offers a comprehensive listing of information and issues affecting children and teens. Explore the wide spectrum of physical, emotional, and social growth topics for children of all ages.
The American Academy of Pediatrics (AAP) and its member pediatricians dedicate their efforts and resources to the health, safety, and well-being of infants, children, adolescents, and young adults.
gives detailed information and suggested steps to help families cope with a child’s chronic illness.
The AACAP (American Academy of Child and Adolescent Psychiatry) is a national professional medical association dedicated to treating and improving the quality of life for children, adolescents, and families affected by various disorders. This article about children with long-term illness is part of a Family Fact section.
Sensory Processing Disorder Checklist. Many children with special health needs may have sensory issues (muscle coordination or overly/under-sensitive to certain sounds, smells, tastes, visual input) that affect functioning in both home and school environments. This simple checklist for parents is a good starting point to begin discussion with physicians, therapists, and school personnel. The link above is from the book The Out-of-Sync Child by Carol S. Kranowitz (1995).
Learning disability concerns at school or in the workplace? The Interactive LD Checklist can be utilized for preschool age through high school and with specialized adult surveys.
Family Voices believes that children with special health needs face common problems. With a focus on children’s health care, they offer information on family-centered care, health care financing, and other resources.
Social Security Administration — Children and Social Security. A resource booklet for parents, caregivers, or representatives of children younger than age 18 who have disabilities that might make them eligible for Supplemental Security Income (SSI) payments. It is also for adults who became disabled in childhood and who might be entitled to Social Security Disability Insurance (SSDI) benefits. (This SSDI benefit might be considered a “child’s” benefit because it is paid on a parent’s Social Security earnings record.)
The National Association of School Nurses (NASN) – Parents of children diagnosed with a rare disease often rely on the school nurse as a vital member of their child’s care team. Enlist the aid of the school nurse for assistance in such areas as creating an IHP (Individualized Heath Plan) or 504 plan (for children with special health care needs). School nurses are positioned to offer valuable insight into how chronic illness might impact the P.E.T. (Pupil Evaluation Team) process. The National Association of School Nurses offers SCHLRN-L, an online discussion group that promotes networking among school nurses to share information, insights, and resources.
Members of the National Association of School Nurses (NASN) recognize that there are students whose health care needs affect or have the potential to affect safe and optimal school attendance and academic performance. The professional school nurse can create an Individualized Healthcare Plan (IHP), in collaboration with the student, family, educators, and health care providers.
Part of the Social Security Act, Title V is the state program For Children and Youth with Special Health Care Needs (CYSHCN). Federal law mandates that Title V/CSHCN programs serve these children.
“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 definition can include physical conditions or children with disabilities.
Camp Sunshine provides respite, support, joy, and hope to children with life-threatening illnesses and their immediate families through various stages of a child’s illness. The year-round program is free of charge to all families and includes 24-hour onsite medical and psychosocial support.