Frequently Asked
Questions
What is a chronic illness?
Say: krah’-nik
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).
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.
Most kids with a chronic illness work very hard to keep up with their school
work. They go to school whenever they can, they may have a special teacher
(called a homebound teacher) who comes to their home to teach them, or they
may work with a teacher in the hospital when they are there.
It is a lot of
work to keep up in school when you have a chronic illness. Often, kids tell
us that their friends at school can really help make it easier when they
must be gone.
What is a student with a special health need?
Some kids need glasses to help them see things as clearly as they can. Other
kids need to take allergy shots so they do not sneeze and cough all the time.
Other kids have different kinds of needs, called special health needs. A student
who has a special health need may have a chronic illness, injury or other
health concern that means they need some things to be done differently at
school. For example, a student with diabetes may need to take 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 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.
(see Importance of School Attendance)
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.
- Visit the Parent’s Section on this website for more information
regarding school and the child with a chronic illness.
Remember, your 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.
(for more information, see the Parents section
of this website)
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. Enjoy!
(for more information, see the Educators
section of this website)
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.
(see Nursing Notes)
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.
Will the student with a chronic illness qualify for special education?
Whether or not the student with a chronic illness will qualify for special
education services will be something that must be evaluated individually.
Each student’s needs will be unique, and only by careful assessment
can it be determined what supports each student will require. An assessment
to determine 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 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?
Your 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.
(see Links on this website for some good internet
resources)
For more information, please contact:
Kathy Davis, MSEd, PhD
kdavis2@kumc.edu
(913) 588-6305