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.