Frequently Asked Questions

What is a chronic illness?

A chronic illness is a sickness that a person has for a very long time. Some chronic illnesses last for a few months or a few years (some kinds of cancer last for a few months or years). Other chronic illnesses last for a person’s whole lifetime (like juvenile diabetes mellitus or sickle cell anemia).

Further examples of chronic illnesses are asthma, juvenile rheumatoid arthritis, primary immunodeficiency, epilepsy, cystic fibrosis, inflammatory bowel disease, and irritable bowel syndrome.

When a kid has a chronic illness, it may mean that she has to be absent from school because she is going to a doctor’s appointment, she is getting treatment or she is in the hospital.

It can be very hard to keep up with school work when you have to be out of school a lot. Kids who have to miss school because of a chronic illness miss getting to be at school and they miss their friends.

What are some of the most common pediatric chronic illnesses?

There are many chronic illnesses of childhood. Some of the most commonly seen chronic illnesses of childhood include asthma, a variety of types of cancer (brain tumors, leukemias and lymphomas and solid tumors), cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis (JRA), lupus and sickle cell anemia. The way that these diagnoses impact individual children may vary greatly. For example, one student may not evidence significant breathing problems with a diagnosis of asthma, where another may have very serious difficulties that require close monitoring and interventions. Similarly, some children with sickle cell anemia may rarely have a sickle cell crises, while others may have frequent crises with serious complications or stroke. Therefore, it is extremely important to find out how each individual student is impacted by his/her diagnosis.

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

In our society, we are used to taking care of people who are sick by suggesting they go to bed, get plenty of rest, and take care of themselves until their health returns to normal. For children with chronic illnesses, that may not be possible. Their illness, or diagnosis, may last several years or for their entire life.

For a child with diabetes, cystic fibrosis, many types of cancer, asthma or other chronic diagnoses, the best plan is to help them learn to live with their illness. Future success and adjustment may be determined by how successful the young person is in making their diagnosis just another aspect or characteristic of who they are.

Kids with chronic illness must work hard to figure out how to continue with normal activities of daily life. Time in the hospital, doctors visits, not feeling well and many other events can interrupt school attendance.

We do know that being back in school is often very good for a child with a chronic illness. School may be the place where a chronically ill child can feel success and achievement, and can focus on the things they can still do, instead of the things that may be limited by a chronic illness.

How do I, as a parent, help my child return to school?

Returning to school, after the diagnosis of a chronic illness or a hospitalization due to an already diagnosed illness, is stressful for both you, the parent, and your child. The doctors have probably told you to be careful and take precautions to help ensure your child’s health. You may wonder if all of that can be done at school, and if your child will be safe there. Fears of teasing or rejection as a result of the diagnosis are also frequent concerns of parents and students with chronic illnesses. You are not alone! What you are feeling is very normal. The key is good communication between all persons. Here are some suggestions:
• Talk to the hospital educator, your child’s doctor, nurse, psychologist or social worker about school reentry concerns.
• Talk to your child’s teacher(s), counselor, school nurse, social worker and administrator about your child’s diagnosis and special needs at school.
• Talk to your child’s classmates about the diagnosis and give them clear, accurate information. The hospital educator, school nurse, or counselor may be able to help you with education of the peers.
• Talk to your child and his concerns and ways you can help him deal with those issues. Reassure your child that his concerns are very normal, but there are ways to help him return to school and continue to enjoy the experience.

A child will be better off by returning to school. Staying home or having homebound education for an extended time, if not absolutely necessary, may lead to other areas of concern.

What is my role as an educator?

Your role as 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 planned for and modifications or accommodations should be provided. However, once that is accomplished, you should be free to be the child’s teacher, rather than feeling that you must also be the child’s nurse. You will need the support of the school nurse and administrators to ensure that you are free to go about the business of being a teacher. With parent and student consent, educating the rest of your class about their friend’s health condition may enable everyone to go about their daily business of learning as usual. Many educators report that working with a child with special health needs is challenging and rewarding.

What is my role as the school nurse?

The role of the school nurse is integral in assuring the successful school reentry and reintegration of a student with a chronic illness. You will be 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. She may need to monitor blood sugars, medication administration, peak flow meters and rest time during the school day. A health care plan may ensure that any potential emergencies or special circumstances are planned for in advance.

What is my role as a school administrator?

The administrator will determine how other faculty and staff respond to the needs of a student with a chronic illness. You have the opportunity to ensure that these special students have the support and understanding that is necessary for continued and optimal school success. The administrator can pave the way to a rapid response to parents and child, approving necessary accommodations and modifications, and paving the way for evaluation and subsequent provision of special education services, when necessary. More than anything, the attitude of the administrator will likely shape the attitude of all others in the school in regard to the child with a chronic illness.

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

The difference between an IEP and a 504, is that if your child needs access to the curriculum, but they can learn from the regular education curriculum, the 504 is approiate. 504 is a Civil rights law, under ADA (American with Disabilities Act).  An IEP (Indivual education Program) falls under IDEA (Individual with Disabilities Education Act) and is an Educational Law. An IEP says your child needs a "special education program"  a program that is fundamentally different from the way other children are learning.  Both can technically provide specialized instruction, but because no federal funding accompanies a 504, in practice schools a 504 is used only for accommodations,  modifications, (not for specialized instruction, related services, etc.).  If  child needs those, then it's an IEP.  Either one should encompass all of the child's needs. Any child covered under IDEA (has an IEP) is automatically under the Section 504 laws (but the opposite is not true). IDEA (child with a IEP) offers more rights and protections than 504.

Whether the student requires an IEP or a 504 Plan is based on the individual learner and his/her needs. It is wise to evaluate the student’s needs, and to consider one of these methods for ensuring that individual requirements are 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 are some other factors that may impact learning?

Grief, child abuse, anxiety and stress. chronic absences, bullying, and many other issues that kids must deal with may cause challenges in learning. Each of these situations may result in difficulty with attention, concentration or memory. Being aware of the potential for learning challenges may help educators identify ways to help their students.

Where do I go for more information?

A child’s doctor will be able to direct you to some sources of additional information. The doctor may have printed material or books that are recommended for your child’s specific needs. The public library is another place to go to seek more information. Your child’s principal will be able to tell you how to get more information about school district issues. The internet is a great source for additional information about your child’s chronic illness, federal government sites for persons with disabilities, special education sites at both the federal and state level, and much more. Of course, you want to make sure that the site you are visiting contains accurate and factual information.