Approximately six million children are hospitalized in the U.S. each year.
Children with special healthcare needs may have chronic health conditions such as diabetes, asthma, autism, cancer, cerebral palsy, heart disorders or other conditions that may impact their normal activities intermittently for more than three months out of the year.
Children with special healthcare needs may be hospitalized frequently or have home health care to manage complicated, ongoing conditions that do not resolve. These children are always living with a chronic condition even when they are well. Approximately twenty percent of children in the United States have a special healthcare need.
Individualized Healthcare Plans for Children With Special Healthcare Needs
Children with special healthcare needs should have an individual healthcare plan (IHP) to clarify exactly what medical care or accommodations they need in school, when they need it, and who is going to provide it.
Parents can arrange an in-service at their child’s school to ensure that school staff fully understand the needs of the child, along with the stipulations of their IHP. The in-service is usually coordinated by a nurse and a child life specialist from the hospital.
School nurses review a child’s IHP and how it will be implemented. Most children are appropriately served by their regular education system utilizing counseling and school health services. Often a child has a condition that interferes with school in only a very limited way. He or she may require medication at school or need a modified gym class.
The IHP should be created with input from the parents, the healthcare team and the child’s doctors, and then given to the school nurse. The school nurse should be designated as the contact person about the child with special healthcare needs.
The IHP we have developed is unique and includes guidance about preparing a child to return to school. Although IHPs are best practice, they are not mandated by law. Some organizations have developed their own IHPs such as the Diabetes Foundation and the Epilepsy Foundation.
As far back as March 1983, a research project was done at Vanderbilt University through The Center for the Study of Families to inquire about public policies affecting chronically ill children and their families.
Many of the identified gaps for these children still exist today such as:
* Lack of communication between the school and healthcare teams.
* Lack of understanding about the illness/disability and how it impacts the child in school.
* Parental difficulty navigating the educational system.
* Parents not understanding the education laws for children with special healthcare needs.
* Need for a contact person in both school and hospital to facilitate communication.
* Flexible attendance and home tutoring policies to accommodate children when they are sick
* Up-to-date professional development opportunities for educators, school personnel, and psycho-social providers to develop understanding and strategies related to the side effects of medication and medical treatments on the child which may cause academic changes, behavioral issues, and physical challenges.
Advancements and breakthroughs in medical research have made a positive impact on children’s health outcomes and their lives. Even our understanding about how best to help children with special healthcare needs has evolved.
We know that children with special healthcare needs face many challenges, but their lives have great potential.
Having a professional, well-developed personalized IHP gives a child the best chance to be successful and to live his or her life to the fullest. IHPs should be attached to either the child’s Individual Education Plan (IEP) or their 504 Plan when they exist, but if those plans are not in place, the IHP can stand alone.
It is important that all the information is located together and easy to find. For your reference and support, please see a sample IHP, and its accompanying Confidentiality Statement, co-developed by Maggie Hoffman and Donna Appell.
Patty Weiner is a mother and grandmother whose career spans over thirty-five years as a child life specialist and educator. With an MS in Special Education, she served as the Director of Child Life and Education Services at North Shore-Long Island Jewish Medical Center. She was the founding Director of the Master’s Degree program in Child Life at Bank Street College of Education in New York. Patty is presently and educational consultant for The Making Headway Foundation, a not-for-profit organization dedicated to children with brain and spinal cord tumors and their families. She is the author of the parent guide, Taking Your Child To The Doctor Or The Hospital: Helpful suggestions and practical tips to make your child’s visit more comfortable.
Donna Appell is the mother of two children. Her oldest child has Hermansky-Pudlak Syndrome (HPS1). Feeling desperate in her attempts to find help, she founded The Hermansky-Pudlak Syndrome Network Inc. in 1992. She is an RN and worked in an ICU for 22 yrs and presently is the Executive Director of the HPS Network.
Maggie Hoffman has worked for 30 years to strengthen and support families of children & adults with special health care needs: Teaching parents how to tell their story to professionals to get the care, support and services their child/adult child needs, (Narrative Medicine), Helping medical, educational and community providers understand the challenges children & adults children w/special health care needs & their families face in their homes and communities, (Project DOCC), Shaping and influencing policy to make it more responsive to children/adult children and their families. (NYSELFD)