Frequently-asked Questions (FAQs)

What is a chronic illness?

A chronic illness is a sickness that a person has for a very long time. Some chronic illnesses, such as cancer, last for a few months or a few years. Others, such as diabetes or sickle cell anemia, last for a person's whole lifetime.

A chronic illness might cause the child to miss school frequently for medical appointments or treatment sessions. Staying current with lessons and homework can become quite a challenge for these students. School absence causes the student to miss out on more than the classroom instruction; it interferes with the normal social interaction with friends and classmates.

Kids with a chronic illnesses work very hard to keep up with school work. It is important to attend school whenever possible. However, educational help is available through the school, and can even be arranged at home or in the hospital.

Keeping up with school is difficult when dealing with a chronic illness, but friends at school can make a world of difference.

What is a student with a special health need?

Some kids need glasses to help them see things clearly. Others need periodic allergy shots to prevent sneezing and coughing. Other kids have different kinds of needs, called special health needs. A student with a special health need might have a chronic illness, an injury or some other health concern that requires some accommodations at school. For example, a student with diabetes might need an insulin injection before lunch.

What are some of the most common pediatric chronic illnesses?

There are many chronic illnesses of childhood. Some of the most commonly seen diagnoses include asthma, cancer (including brain tumors, leukemias and lymphomas), cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis (JRA), lupus (SLE) and sickle cell anemia. Although many children might have the same diagnosis, the particular way in which each child will be affected is unique to that individual. Therefore, it is critical that every caregiver learn how each student responds to the diagnosis.

Why should a child with a chronic illness go to school?

Kids do best in school.

In our society, we are used to taking care of anyone who is ill and suggesting plenty of rest, drinking a lot of fluids, etc. until normal health returns. For someone with chronic illnesses, that might not be possible. The diagnosis can last several years or for the entire life.

The child with diabetes, cystic fibrosis, cancer, asthma or any other chronic diagnoses, should be encouraged to live with the illness. The young person should realize that a diagnosis is just a name that describes one aspect of life. In no way does it define that person. Future growth and adjustment may depend on the success of this process.

A young person with a chronic illness must work hard to continue with normal activities of life. Many events will interfere with school attendance and the ability to participate in previously enjoyed activities.

Returning to school is very good for the child with a chronic illness. School may be the only place where a chronically ill child can feel success and achievement. The child can focus on the things that can be accomplished, rather than perseverating on other things that cannot be done.

For more information, as well as a historical perspective, see Importance of School Attendance

How can a parent help prepare a child for the return to school?

After a chronic illness is initially diagnosed, a lengthy hospitalization, a significant change in health or any other event that necessitates a prolonged absence from school, the return to school can be very stressful for the patient and caregivers. Medical advice regarding the precautions necessary to protect the patient's health might seem incompatible with a return to school. Fears of teasing and rejection are frequent concerns. All of these emotions are common and expected. The solution to these problems is frequently as simple as speaking up. The key seems to be good, open communication between each person involved in the child's health.

Here are some suggestions:

  • The doctor, school nurse, hospital educator, psychologist and social worker are all excellent resources for the return to school.
  • Discuss with teachers, counselor, school nurse, social worker and administrator details of the diagnosis and any special needs at school.
  • The student's classmates will have many questions regarding the diagnosis and any changes in the student. It is important that they be given clear, concise and accurate information. The hospital educator, school nurse, or counselor should be able to assist with education of the peers.
  • The young person with the chronic illness must be included in all discussions. The child's concerns must be taken seriously. Make sure that everyone remains focused on the goal of ensuring that the student receives a proper education, maintains emotional growth and continues to enjoy life.

Remember, all children are better off in school. Relying on homebound education for an extended time, except when absolutely necessary, can create other problems.

What is the role of an educator?

Educators are key for child's development.

The role of an educator of a child with a chronic illness is to provide a sound, comprehensive educational opportunity for that child in the least restrictive environment. The student's physical needs should be anticipated and modifications or accommodations should be provided. However, once that is accomplished, an educator should be the child's teacher, and not the child's nurse. The school nurse and the administrators must provide support so that the teacher remains free to go about the business of being a teacher. With the consent of the student and parents, consider educating the rest of the class about their friend's health condition. This may enable everyone to go about their daily business of learning as usual. Working with a child who has special health needs is challenging, but it is also rewarding. It is an experience that should not be missed!
(for more information, see the Educators section of this Web site)

What is the role of the school nurse?

The school nurse is integral in assuring the successful school re-entry and reintegration of a student with a chronic illness. The nurse is the "glue" and the liaison between the family, hospital and school. The nurse may be asked to help educate staff, students and others about the child's health care needs. The nurse might need to monitor blood sugar readings, medication administration, peak flow results and provide rest time during the school day. A health care plan may ensure that any potential emergencies or special circumstances are planned for in advance.
(see Nursing Notes)

What is the role of a school administrator?

Administrators provide guidance.

The administrator will monitor how other faculty and staff respond to the needs of the student with a chronic illness. This entails both an opportunity and the responsibility to ensure that these special students have the support and understanding necessary for optimal school success. The administrator can pave the way for a rapid response to the needs identified by the parents and the child, approve necessary accommodations and modifications, and remove obstacles to evaluation and subsequent provision of special education services, if indicated. More than anything, the attitude of the administrator will likely shape the attitude of all others in the school regarding the child with a chronic illness.

Will the student qualify for special education?

Whether the student with a chronic illness should qualify for special education services must be evaluated individually. Each student's needs are unique, and only careful assessment can determine the supports each student requires. An assessment of the student's needs is imperative.

What is the difference between an IEP and 504 Plan, and which works best?

Whether the student requires an IEP or a 504 Plan depends on the individual needs of that student. It is wise to evaluate the student's needs to determine the best approach to ensure that individual's educational requirements will be recognized and met. It is safe to assume that most students with special health conditions or chronic illnesses will require some sort of interventions to "level the playing field" with their classmates.

What other factors can impact learning?

Many issues that confront kids may cause challenges in learning:  grief, child abuse, anxiety, stress, chronic absences, bullying and others. Each of these situations may cause difficulty with attention, concentration or memory. Being aware of the potential for learning challenges may help educators identify problems and find ways to help the students.

Is more information available?

Many questions.

Information is available from many sources: