Back to School with a Chronic Illness

Published September 11, 2018

Preparation for return to school in the Fall can be stressful for any family. For families dealing with chronic illness in a child, the stresses are magnified. Likewise, for school systems, the strains of dealing with returning students with chronic disease are substantial, and they are becoming worse every year. For example, the SEARCH for Diabetes in Youth study reported that the prevalence of type 2 diabetes in children has been increasing at almost 5% per year1. The rise has been tied to the overall increase in the rate of childhood obesity2.

Fortunately, there are several tested strategies that can help parents manage the back-to-school transition.

Plan Early

There is no substitute for good early planning. Ideally, planning for the next school year should begin as the previous year is ending. The teachers and administration like to be aware of the presence of chronically ill students who may be entering the school so as to budget for resources — human and otherwise. For families moving to new districts, the best time to alert the school is as soon as possible, even if the school year has already begun.

To prepare the chronically ill student, some experts recommend transitioning to sleep and eating schedules several weeks before the school year begins3. For some students, a visit to the classroom before the beginning of the year may help ease the transition, particularly for students dealing with substantial anxiety surrounding return to school.

Who Will Educate the Educators?

Teachers and administrators are smart, but they may know nothing at all about a particular child’s medical condition. The same goes for school nurses. Fortunately, many disease-specific advocacy organizations provide materials designed for schools to educate staff regarding the basics of particular illnesses. The American Diabetes Association, for example, provides comprehensive written and electronic resources specifically for schools4.

For students with rare chronic diseases, a letter from the child’s specialist can be enormously helpful. These letters often include detailed emergency plans designed for both teachers and nurses. Staff frequently convene team meetings with parents before school begins to review these materials and to answer any questions staff might have.

504 Plans

For every student with a chronic illness, federal legislation guarantees that schools must make any reasonable accommodation to allow the student to receive public education. Section 504 of the Rehabilitation Act of 19735 (the precursor to the Americans with Disabilities Act), the first American civil rights legislation covering disabled citizens, guarantees equal access to education for students with chronic illnesses. Today, the action plans written up by schools and parents are referred to as ‘504 plans’. Every student with a chronic illness returning to school should have a 504 plan in place, preferably completed before the school year begins.

Medical Treatment at Home

There are several options for students requiring therapy during the school year. For example, students with cystic fibrosis can undergo antibiotic therapy and physical therapy in their own homes (the so-called ‘home clean-out’). In fact, students with any chronic disease requiring infusion therapy can receive treatments at home.

Finding Flexible Providers

A visit to a specialist can occupy an entire day, precluding school attendance in many cases. Specialists who keep evening or weekend hours can help students avoid missing school due to chronic illness.

Use of telemedicine can also help prevent missed school days. The challenge for providers is that patient contact outside the context of an office visit may not be reimbursed. Specialists based in large academic medical centers may experience push-back on the part of administrators if the physicians squander opportunities to render reimbursable services.

The Centers for Medicare & Medicaid Services (CMS), realizing the potential benefits of telemedicine, recently announced that it would begin considering reimbursement for telehealth services6. Further enhancements to reimbursement for telemedicine have been hinted at by the federal government. These trends suggest that school children with chronic diseases will soon enjoy greater opportunities to stay healthy and to stay in school.

References

  1. Type 2 Diabetes in Youth: New Lessons from the SEARCH Study | NIH
  2. Prevalence of Childhood Obesity in the United States | Centers for Disease Control and Prevention
  3. Back-to-School Tips for Children With Chronic Illness | The Mighty
  4. Help for Schools: Training Resources | America Diabetes Association
  5. Section 504 of the Rehabilitation Act of 1973 | Disability Rights Education & Defense Fund
  6. Medicare Program; Medicare Shared Savings Program; Accountable Care Organizations–Pathways to Success | Department of Health & Human Services