By Patti Richards
All she wants to do is go to school like the other kids. All you want for her is to be able to do just that. But your daughter has a chronic illness that demands all of her energy and most of your time. Between doctor visits, blood work, diagnostic testing and specialist care, there just simply aren’t enough hours in the day for school work. And even if there were, would she have the strength to do what it takes to get caught up and stay caught up?
It may seem like keeping your child on schedule at school while coping with a chronic illness is impossible. But with the right help and proper balance between school work and managing pain and treatments, it is possible for your child to get the education she so desperately needs and wants. It may look at little different than what both of you expected, but as with most parts of dealing with chronic illness, flexibility is the key. Understanding the services that are available to you and working with people who can help is the first step.
School and Chronic Illness
Regular attendance at school is an important component of a good education. But when that possibility is taken away by illness, it’s easy to feel overwhelmed. Like other unexpected detours — the death of a loved one, financial hardship, an unplanned move — chronic illness can risk derailing your child’s educational success if you’re not diligent.
Since everything about this journey is new and unfamiliar, keeping up with math and reading isn’t always a priority. It’s important to pause and determine how much school your child is missing and talk to her doctor about how much she is likely to miss so you can put a plan in place.
Considering the many ways that chronic illness can impact your child’s life over time, being proactive about the things you can control — like her education — can decrease her stress level, improve healing and help prevent depression from developing.
Where to Begin?
It may seem like a maze with no map, but navigating the education system for your chronically ill child is possible with the right help. Once you and your child’s doctor or specialist have determined how many days she is likely to miss and what her diagnosis looks like going forward, it’s time to call your school district’s special education or special services office. Even if your child attends a private or parochial school, she is entitled to services through her public school district.
The special services department oversees special education programs within the school buildings as well as providing accommodations within the classroom and housebound services for students dealing with chronic illness. The programs available for your child can be specifically designed to meet her unique needs.
Your child’s illness may qualify her for educational support under the Individuals with Disabilities Education Act (IDEA). IDEA protects your child’s right to an education free from barriers and restrictions. Talking to your district’s special services department can get you connected with people who can help create a program that includes home instruction, access to testing, access to extracurricular activities and even virtual classrooms.
In some cases, chronic illness qualifies your child for an Individualized Education Programs (IEP). Used primarily for students needing special education services, IEPs are customized education plans developed for your child by teachers, guidance counselors, psychologist and other specialists. Other options include “504 plans” that deal specifically with making the psychical accommodations necessary for your child to attend school on the days when she is able. These plans address her ability to move around the classroom, playground, lunchroom, restroom or any area where she needs help to have appropriate access. Your child’s school district is there to help her get the best education possible, even when she’s dealing with a chronic illness.2
If your child’s illness requires extended hospital stays, get connected with a hospital social worker or child-life specialist who can arrange for a bedside teacher or small classroom within the hospital setting. These options are often used for kids in hospital for cancer treatment or other types of treatment where staying home isn’t possible.
The hospital education staff can be a bridge to your child’s classroom, providing a unique balance between instruction and treatment. Staying caught up at school is always secondary to your child’s physical wellbeing, and hospital education specialists are experts at planning programs that best meet your child’s emotional health.2
Help for Your Child
Navigating the healthcare system to meet the needs of your child can seem overwhelming. But it’s important to remember that no matter where you are on this journey, you are not alone. If you have questions regarding your child’s education while receiving treatment for a chronic illness, call us now.
1 “The Relationship Between School Attendance and Health.” RWJF, 26 Dec. 2017.
2 “Balancing Academics and Serious Illness.” Edited by Alycia M. Taggi, KidsHealth, The Nemours Foundation, Oct. 2015.Share