Attending School During Childhood Cancer Treatment

In US public schools, a child in cancer treatment can be supported through one of two federal frameworks. They are not interchangeable. Asking for the wrong one wastes weeks.

An individualized education program (IEP) comes from the Individuals with Disabilities Education Act (IDEA). IDEA is a special education law. A child qualifies under a named disability category. For cancer that is usually "other health impairment". It is defined as limited strength, vitality or alertness. The cause must be a chronic or acute health problem, such as leukemia. And it must adversely affect educational performance. An IEP contains goals, specialized instruction, related services and progress monitoring.

A 504 plan comes from Section 504 of the Rehabilitation Act. That is a civil rights law. It bars disability discrimination in any school that receives federal funds. Eligibility is broader: a physical or mental impairment that substantially limits a major life activity. Schools may not take medication or other mitigating measures into account when deciding eligibility. A 504 plan usually lists accommodations rather than specialized instruction.

Many children in treatment do not need changed instruction. They need access, and access is a 504 question. Some children do need an IEP. One example is a child with neurocognitive effects, meaning changes in thinking and learning. These can follow cranial radiation or intrathecal chemotherapy. Another is a child who has missed a lot of teaching and now finds learning hard.

Request an evaluation in writing. Date the letter and keep a copy. The school needs written parental consent before a first evaluation. Evaluations must draw on more than one source. That includes testing, teacher input, physical condition and adaptive behavior. Eligibility is then decided by a group of people who know the child and the assessment data. Parents have procedural safeguards: notice, access to records, an impartial hearing with the right to counsel, and a review procedure.

Ask the treating hospital whether it has a school liaison or education specialist. Many pediatric oncology programs do. They will write to the district and join meetings, and that changes how those meetings go.

IDEA requires each district to keep a continuum of alternative placements. That must include home instruction, and instruction in hospitals and institutions. This exists for long inpatient stays. It also exists for neutropenic stretches, meaning periods when the white-blood-cell count is low.

In practice you are negotiating four things. How many instructional hours per week. Who the named teacher is. How assignments are delivered and returned. And how attendance is coded, so absences do not trigger truancy procedures or grade penalties. Hours, eligibility criteria and the paperwork a physician must sign vary by state and district. Ask what your district's threshold is rather than assuming.

The school nurse is usually the person who can turn a medical plan into a school day. Hold a re-entry meeting before the child returns. It typically covers:

• Neutrophil count thresholds for attending, and what happens on low-count days.
• Central line or port care, activity restrictions, and what PE looks like.
• Immediate notification to the family of chickenpox, measles or other outbreaks in the building.
• Medication administration during the school day, and who holds it.
• Fatigue provisions: a rest space, a shortened day, a second set of textbooks kept at home, elevator access, an extra locker.
• Bathroom access without asking permission each time.
• Testing accommodations, extended deadlines, and reduced repetitive homework.
• A named adult the child can go to, and a wordless signal for leaving the room.
• What classmates will be told, and by whom, decided by the family.

Treatment changes, and the plan needs to change with it. A plan written during induction will not fit maintenance. Neither will fit the year after treatment ends, when cognitive late effects sometimes surface for the first time. Ask for a review date at the meeting, rather than waiting for something to break.

Keep a binder: evaluation reports, the signed plan, all correspondence, and letters from the oncology team. It is the record that makes the next meeting shorter.

These frameworks are US-specific, and state rules vary within them. This page is information, not legal advice.

• Call the oncology team's 24-hour number the minute it happens if your child develops a temperature of 100.4°F (38°C) or higher while the neutrophil count is low or a central line is in place, or if they turn shivery, floppy or mottled. Fever with low counts is treated as an emergency, and antibiotics should not wait. If the line does not answer within a few minutes, take your child to an emergency department and say at once that they are on cancer treatment.
• Call the oncology team the same day if the school notifies you of chickenpox, shingles or measles in the building and your child was exposed. Preventive treatment with varicella-zoster immune globulin has to be given within 10 days of the exposure, so this cannot be held over for the next clinic visit.
• Call the oncology team within a day or two if redness, swelling, oozing or soreness appears around the port or line site, or if your child comes home unusually tired, breathless on the stairs, or bruising easily.

• NCI — Infection and Neutropenia During Cancer Treatment
• CDC — Chickenpox: Clinical Guidance and Post-Exposure Prophylaxis
• IDEA 34 CFR 300.115: Continuum of alternative placements
• U.S. Department of Education: FAQ on Section 504 and FAPE
• U.S. Department of Education: About IDEA
• NCI: Late Effects of Treatment for Childhood Cancer (PDQ)