Learning and School After Childhood Cancer

Some children finish cancer treatment and return to school as they were. Others come back and find that reading, remembering, or keeping up takes far more effort than it used to. That second group is not imagining it, and the change is not laziness. This page explains what causes it, how it is measured, and which two federal laws you can use.

NCI names the treatments linked to cognitive late effects in childhood cancer survivors:

• Radiation to the brain or spinal cord, especially high doses.
• Intrathecal chemotherapy, which is chemotherapy injected into the fluid around the spinal cord.
• High-dose methotrexate or cytarabine, which can cross the blood-brain barrier.

Two groups of survivors carry the most risk. NCI names survivors of brain and spinal cord tumors, and survivors of acute lymphoblastic leukemia (ALL).

Age at treatment matters as well. For brain tumor survivors, NCI identifies "being 5 years old or younger at the time of treatment" as a risk factor.

NCI describes the specific problems survivors report:

• Problems with memory.
• Problems with paying attention.
• Trouble with solving problems.
• Trouble learning to read, write, or do math.
• A slower ability to learn and use new information.

Read that last one again. The issue is often speed, not capacity. A child may know the material and still not finish the test. That difference matters, because the accommodation for slow processing is extra time, not easier work.

Because the effect falls on learning new material, ask for reassessment at every school transition. The jump into middle school and the jump into high school both increase the volume of new information a child has to absorb each week.

Hearing and learning are linked. NCI's reporting on sodium thiosulfate quotes the scientific director of the National Institute on Deafness and Other Communication Disorders saying cisplatin "causes permanent hearing loss in up to 75% of children who receive it." NCI's late-effects summary puts the school consequence plainly: a young child with hearing loss may have trouble learning, communicating, doing well in school, and interacting with others.

If your child had cisplatin, ask for a current audiogram before anyone concludes that the problem is attention.

NCI recommends neuropsychological assessment for survivors at risk. This is a set of standardized tests of thinking skills, usually run over several hours by a psychologist.

Ask that the report cover the areas NCI names as affected: memory, attention, problem solving, reading, writing, math, and the speed of learning new information.

Ask for two things in writing. First, the scores. Second, a plain list of classroom recommendations that a teacher can act on without a psychology degree.

There are two ways a public school supports a child with a medical condition. They are not the same, and families are often steered to one without hearing about the other.

IDEA and the IEP

The Individuals with Disabilities Education Act (IDEA) guarantees "a free appropriate public education to eligible children with disabilities." It provides "special education and related services." The Department of Education calls the individualized education program (IEP) "the primary vehicle for providing FAPE."

IDEA Part B covers ages 3 through 21. Part C covers infants and toddlers from birth through age 2.

Eligibility has two parts. The statute lists the qualifying categories:

• Intellectual disabilities.
• Hearing impairments, including deafness.
• Speech or language impairments.
• Visual impairments, including blindness.
• Serious emotional disturbance.
• Orthopedic impairments.
• Autism.
• Traumatic brain injury.
• Other health impairments.
• Specific learning disabilities.

The child must also be one "who, by reason thereof, needs special education and related services."

Both parts must be met. A category alone is not enough. The child must also need special education, meaning specially designed instruction.

IDEA also requires the least restrictive environment. Children with disabilities "must be educated with children who are not disabled" to the maximum extent appropriate. Removal from regular classes is allowed only in one case. That is when education there, with extra aids and services, "cannot be achieved satisfactorily."

Section 504 and the 504 plan

Section 504 is a civil rights law. Its definition is broader. A person with a disability is someone who has "a physical or mental impairment which substantially limits one or more major life activities." It also covers someone with "a record of such an impairment." And it covers someone "regarded as having such an impairment."

Learning is on the list of major life activities. So are caring for one's self, walking, seeing, hearing, speaking, breathing, and working. The Department of Education's Office for Civil Rights states that "substantially limits must be construed broadly."

OCR lists what schools that take federal funds must do. They must identify and locate children with disabilities each year. They must provide free appropriate public education. They must use fair evaluation and placement rules. They must involve parents through procedural safeguards. And they must give equal access to activities outside class.

The practical difference follows from the definitions. A child who needs specially designed instruction fits IDEA. A child who is keeping up academically but needs changes to how school is delivered often fits Section 504. Ask for both to be considered, in writing. Ask which one the school is refusing, and why.

The Office for Civil Rights published a fact sheet listing accommodations schools may provide to students with cancer. The examples include:

• Allowing the student to make up work without penalty, and excusing absences for medical appointments.
• Adjusting the schedule to allow extra time to travel between classes, and adding rest breaks.
• Preferred seating and other changes for a student who has difficulty concentrating.
• Allowing the student to eat and drink during instruction.
• Adapting the required level of activity for physical education.
• Prompt notification, without naming anyone, when a contagious illness is going around.
• Allowing the student to use the restroom as needed.
• Granting requests for distance learning at certain points.

That last item matters during treatment, when infection risk keeps a child home.

The rules change after high school. OCR states that a college has no obligation to identify students with disabilities, and that Section 504 bars a college from asking before admission whether an applicant has one. At this level it is the student's own responsibility to make the condition known and to request academic adjustments, in good time. The college may ask for documentation of the disability, and of why the services are needed.

Tell your teenager this before senior year. The support that arrived automatically for twelve years will not arrive at all unless they ask.

• Put your request for evaluation in writing, dated, to the school, and keep a copy.
• Send the treatment summary, the neuropsychological report, and the current audiogram.
• Ask for both an IDEA eligibility decision and a Section 504 decision.
• Ask that accommodations be written down, not agreed verbally with one teacher.
• Set a date to review the plan, and set another at the next school transition.

• Which parts of my child's treatment raise the risk of learning problems?
• Was my child 5 or younger during brain-directed treatment?
• Who orders the neuropsychological evaluation, and how long is the wait?
• Is the difficulty in speed, memory, attention, or a specific subject?
• Has hearing been retested since treatment ended?
• Does my child qualify for an IEP, a 504 plan, or both?
• What happens to these supports when my child changes schools or turns 18?

• Late Effects of Treatment for Childhood Cancer (PDQ) Patient Version — National Cancer Institute.
• Sodium Thiosulfate Reduces Hearing Loss in Kids with Cancer — National Cancer Institute.
• About IDEA — U.S. Department of Education.
• IDEA Section 1401(3), definition of a child with a disability — U.S. Department of Education.
• The Civil Rights of Students With Hidden Disabilities and Section 504 — U.S. Department of Education.
• Section 504 Protections for Students with Cancer — U.S. Department of Education, Office for Civil Rights.