Childhood Cancer

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Childhood Brain and Spinal Cord Tumors

Individuals with Disabilities Education Act

The cornerstone of all federal special education legislation in the United States is the Individuals with Disabilities Education Act (IDEA). This law, first passed in 1990, has been amended several times. It covers children and their families from birth to age 3, preschoolers, and school-aged children through age 21. The major provisions of this legislation are the following:

  • All children, regardless of disability, are entitled to a free and appropriate public education and necessary related services in the least restrictive environment.
  • Children will receive fair testing to determine whether they need special education services.
  • Parents can challenge the decisions of the school system, and disputes will be resolved by an impartial third party.
  • Parents of a child with disabilities participate in the planning and decision-making for their child’s special education.

You should check the school district website or contact the school superintendent, director of special education, or special education advisory committee in your school district to obtain a copy of the school system’s procedures for special education. Depending on the district, this document may range from two to several hundred pages.

Our son has multiple late effects from his chemotherapy, radiation, and stem cell transplant. He has an FM unit to help him hear his teacher. The school system was great about providing physical therapy, occupational therapy, and speech therapy. But they wanted to put him in a special needs school, but I wanted him to have support in the classroom. They said they had no staff, so I put an ad in the newspaper at a university graduate school near his school. We found a second-year grad student in special ed to help him in the classroom. The school district refused to hire her, so we appealed and had a hearing. We won. The aide is wonderful and helps Michael stay on task, understand instructions, and keep organized. I’m an effective, but exhausted, advocate.

Several online sources provide reliable information about learning disabilities and parents’ rights under special education law. Two that many parents find especially useful are Wrightslaw at www.wrightslaw.com and the National Center for Learning Disabilities at www.ncld.org.

Referral for services

State-of-the-art treatment for childhood brain and spinal cord tumors has resulted in greater numbers of long-term survivors, but not without cost. Surgery, radiation, chemotherapy, and stem cell transplants can cause changes in learning abilities, motor skills, vision, hearing, and social skills. Parents and educators need to remain vigilant for these issues that affect learning so intervention can occur quickly. Signs of learning disabilities include problems with:

  • Handwriting
  • Spelling
  • Reading or reading comprehension
  • Understanding math concepts, remembering math facts, comprehending math symbols, sequencing, and working with columns and graphs
  • Auditory or visual language processing, which includes trouble with vocabulary, blending sounds, and syntax
  • Attention deficits
  • Short-term memory and information retrieval
  • Planning and organizational skills
  • Social maturity and social skills

The first step to get your child educational support is called “referral for services.” Every child who had a brain or spinal cord tumor should be referred for services. To make a referral for services, a parent or the child’s teacher writes to the school principal specifically requesting special education testing and stating that the child is “health impaired” due to treatment for cancer. Do not ask for a referral verbally; you must request testing and services in writing. Obtain written notification of the date the school received the letter, because school staff are legally required to hold a meeting within 30 days of receipt of your request.

My son had problems as soon as he entered kindergarten while on treatment. He couldn’t hold a pencil, and he developed difficulties with math and reading. By second grade, I was asking the school for extra help, and they tested him. They did an IEP and gave him special attention in small remedial groups. The school system also provided weekly physical therapy, which really helped him.

The next steps in the special education process are evaluation, eligibility, IEP development, annual review, and 3-year assessments. You will need to become an advocate for your child as your family goes through the necessary steps to determine what placement, modifications, and services will be used to help your child learn.

Evaluation

We have had an excellent experience with the school district throughout preschool and now in kindergarten. We went to them with the first neuropsychological results, which were dismal. They retested him and suggested a special developmental pre-school and occupational therapy. Both helped him enormously. He had an evaluation for special education services done and now has a full-time aide in kindergarten. He is getting the help he needs.

Once the referral is made, an evaluation is needed to find out whether the school district agrees that the child needs additional help, and if so, what types of help would be most beneficial. Usually, a team composed of the teacher, school nurse, district psychologist, speech and language therapist, resource specialist, and Section 504 coordinator attend the first meeting. The evaluation usually includes educational, medical, social, and psychological areas.

Children with a history of surgery, radiation, or chemotherapy to the brain require thorough neuropsychological testing, which is best administered by pediatric neuro-psychologists experienced in testing children with cancer. The results should be shared with the school system, which must consider the findings but may also conduct its own assessment. If parents disagree with the findings from the school’s evaluation, they have the legal right to request an independent educational evaluation by a neuropsychologist, which is paid for by the school district.

Zach has a brain injury because of his treatment. While he is not impulsive, he is not his “age,” either. But we expect that he should still be able to do his own best. We had an advocate who knew where the best place for school for him would be. She helps all brain-injured kids (not only ones with tumors). We also had a neuropsychological evaluation done on Zach and it was very, very detailed. It told his strengths, weaknesses, and the best ways for him to learn.

Children with brain or spinal cord tumors are often evaluated for the need for specific therapies or services in identified areas (called “related services”). Examples of related services are physical therapy, occupation therapy, adaptive physical education, and assistive technology.

Initially, the school was reluctant to test Gina because they thought she was too young (6 years old). But she had been getting occupational therapy at the hospital for 2 years, and I wanted the school to take over. I brought in articles and spoke to the teacher, principal, nurse, and counselor. Gina had a dynamite teacher who really listened, and she helped get permission to have Gina tested. Her tests showed her to be very strong in some areas, and very weak in others. Together, we put together an IEP, which we have updated every spring. Originally, she received weekly occupational therapy and daily help from the special education teacher. She’s now in fourth grade and is doing so well that she no longer needs occupational therapy; she only gets extra help during study hall.

School districts have 60 days from the time the parents agree to the evaluation to complete the evaluation and present the findings. A meeting (including the parents and often the child or teen) is held to discuss the evaluation results and make a determination about whether a child is eligible for services.

Eligibility for special education

The IDEA law requires that your child meet two requirements to be eligible for special education services: 1) The child must have one (or more) of the 14 disabilities listed in the law; and, 2) as a result of the disability, the child needs special education services to benefit from the general education program. The 14 eligibility categories for special education under the federal law are:

  • Autism
  • Deaf/blindness
  • Deafness
  • Developmental delay
  • Emotional disturbance
  • Hearing impairment
  • Intellectual disability
  • Multiple disabilities
  • Orthopedic impairment
  • Other health impairment (OHI)
  • Specific learning disability
  • Speech or language impairment
  • Traumatic brain injury (TBI)
  • Visual impairment, including blindness

Most children with effects from treatment for brain or spinal cord tumors qualify for services under the category of OHI and often a secondary eligibility (e.g., hearing impairment, speech or language impairment, orthopedic impairment, TBI).

Individual education program (IEP)

After eligibility is determined, an IEP is developed. An IEP details the special education program and any other related services that will be provided to meet the individual needs of your child. The IEP describes what your child will be taught, how and when the school will teach it, and any educational accommodations that will be made for your child.

Students with disabilities need to learn the same things as other students: reading, writing, mathematics, history, and other subjects that help them prepare for vocational training or college. The difference is that with an IEP in place, many specialized services, such as small classes, speech therapy, physical therapy, counseling, and instruction by special education teachers, are used.

The IEP has five parts:

1. A description of the child. This section includes your child’s present level of social, behavioral, and physical functioning, academic performance, learning style, and medical history.

2. Goals and objectives. This section lists skills and behaviors that your child is expected to master in a specific time period. These goals should not be vague like “John will learn to write a report,” but rather, “John will prepare and present an oral book report with two general education students by May 1.” Each goal should answer the following questions: Who? What? How? Where? When? How often? When will the service start and end?

There came a time when my husband and I had to decide if we would continue to pursue an academic path for our son or focus more on life skills. This was difficult for us. We did not want to “give up” on our child, but it was clear that because the tumor and treatment had impacted him so severely, he had reached the highest level of classroom learning he could attain. At age 15 he had the math and reading skills of a third grader. As we began to think of his adult life, we saw that his energy was better spent preparing for jobs and independent living than learning how to multiply fractions or write a 3-page book report.

3. Related services. Many specialized services that will be provided at no cost to the family can be mandated by the IEP, including:

  • Speech therapy
  • Physical therapy and adaptive physical education
  • Occupational therapy
  • Social skills training
  • Mental health services
  • Assistive technology assessment
  • Behavioral plans and functional behavior assessment
  • Transportation to and from school and therapy sessions

For each of these services, the IEP should list the frequency, duration, start date, end date, and whether the services will be group or individual, for example, “Jane will receive individual speech therapy sessions twice a week, for 60 minutes a session, from September through December, when her needs will be reevaluated.”

As discussed in Chapter 10, Surgery, rehabilitation services help many children make a full or near full recovery. Children who have a long-term need for rehab can access some of these services from the school system. To advocate for these services, parents should obtain letters of medical necessity from individual therapists, the physiatrist, and the primary treating doctor and present them as supporting documentation during the IEP meeting.

Formal rehabilitation in the outpatient or school setting is frequently enhanced by recreational activities. Community and school athletic teams are excellent therapy for children who can participate in them. Participation in the arts, such as music, art, drama, and dance, are also helpful.

4. Placement. The term placement refers to the least restrictive setting in which the IEP goals and objectives can be met. For example, one student may be in the regular classroom all day with an aide present, and another might leave the classroom for part of each day to receive specialized instruction in a resource room. The IEP should state the percentage of time the child will be in the general education program and the frequency and duration of any special services.

5. Evaluating the IEP. A meeting with all members of your child’s IEP team is held periodically to review your child’s progress toward attaining the short- and long-term goals and objectives of the IEP. To ensure the IEP is working for your child, an annual IEP meeting is required, and parents can request more meetings, if needed, to address any concerns.

If at any time communication deteriorates and you feel your child’s IEP is inadequate or not being followed, here are several facts you need to know:

  • Changes to the IEP cannot be made without parental consent.
  • If parents disagree about the content of the IEP, they can withdraw consent and request (in writing) a meeting to draft a new IEP; or they can consent only to the portions of the IEP with which they agree.
  • Parents can request to have the disagreement settled by an independent mediator and hearing officer.
  • The IEP is a legal document and schools are required to comply with what is written in the IEP.

We’ve set up goals and objectives in Victoria’s IEP so that she succeeds at her level. She is graded against these requirements. We have two or three meetings each year to determine the appropriate level of her capabilities. We’ve negotiated for all her classwork to be done during school hours with one-to-one help in the resource room. Victoria, who has seizures and cognitive issues due to a hypothalamic hamartoma, is on her school’s Honor Roll for grades! Her name was published in our town newspaper along with others who excelled and she received a nice certificate. This is how an IEP is supposed to work, grades being determined upon achievable goals outlined in an IEP, and hard work. She knows of course that grading for her is different than for other kids, and attempted to downplay her accomplishment, but secretly I think that she was quite proud and it has motivated her to work even harder.

IDEA does not describe specific types of educational placement, modifications, and related services. Because options are open, your child’s IEP should reflect those programs and services uniquely appropriate for his needs. Advocates, disability organizations, and your child’s medical team, teachers, and therapists can assist you in determining which options best suit your child, although ultimately you know your child best.

This year (third grade) has been a nightmare. My son has an IEP that focuses on problems with short-term memory, concentration, writing, and reading comprehension. The teacher, even though she is special ed qualified, has been rigid and used lots of timed tests. She told me in one conference that she thought my son’s behavior problems were because he was “spoiled.” The IEP required that she send a note home with my son if he has a seizure, and she has never done it. She even questions him when he tells her that he had a seizure at recess. I learned that the IEP is only as valuable as the teacher who is applying it.

Hundreds of accommodations are available through an IEP. A few examples are:

  • Preferential seating
  • Study groups with discussion for learning/memory
  • Taping of classes for reinforcement
  • Reduction in reading load
  • Books on tape
  • A copy of notes from a peer to increase listening in class and reduce the need for writing
  • A copy of teacher’s planning notes prior to instruction
  • Reduction in writing load
  • Use of computer for written assignments
  • Keyboard training (kindergartners are not too young to learn)
  • Use of planning organizers
  • Calculator use permitted after mastery of concepts demonstrated
  • Extended time for tests
  • Oral tests rather than written tests
  • Extra time to travel between classes
  • Locker placement consideration
  • Key locks instead of combination locks
  • An assignment check-off system
  • Breakdown of large assignments into steps

Nettie recently was tested for auditory processing disorder. She did very well with the testing, but the ability to score it only goes down to 7 years and developmentally she is lower than that in some areas. Therefore, certain aspects of the test were unable to be administered. However, based upon what testing was done, Nettie does demonstrate a great deal of difficulty processing things presented auditorily. It was suggested that we try using a device called an “Easy Listener.” She would wear a little box with headphones. The teacher would wear a microphone which links right to the box Nettie is wearing. That would mean that no matter what the noise level in the room, or where the teacher is, the teacher’s voice will always sound only 6 inches away from Nettie’s ears. We are also going to try using a computer program called Earobics® to try and retrain parts of her brain to “listen” better. Auditory processing disorder is sort of like having dyslexia of the ears. The ears hear fine, but the brain doesn’t receive the message properly. So we’ll see if any of these things help her.

To learn about other accommodations used by survivors and children on treatment, visit the American Childhood Cancer Organization website (www.acco.org/Information/Resources/Books.aspx) to order a free copy of the book Educating the Child with Cancer, 2nd edition.

Transition services

Transition planning, starting no later than age 14, is required for students with IEPs, because special education students have the right to be prepared for graduation, higher education, and/or employment in ways that fit their needs. U.S. high schools may have a Department of Rehabilitative Services (DRS) vocational counselor on staff who helps students with disabilities plan for life after high school, or as part of the student’s transition services, the school can connect the student with the DRS. The DRS can provide:

  • Career guidance and counseling
  • Diagnostic evaluations
  • Supported employment and training

Part of Ben’s transition plan was, at age 16, to travel to the local vocational school 4 days each week to learn basic skills in hotel and retail occupations. He was paid a small amount for each hour of onsite work at participating companies. He received high school credit and by the time he left the school he had two certificates that described his skills and experiences.

For more information about transition planning, visit www.wrightslaw.com/info/trans.index.htm.

As my son grew older, we could see he was ready to interact with a world that was bigger than his high school. With my assistance during his application, interview, and training, a local grocery store hired him as courtesy clerk. Easter Seals® arranged for a job coach who watched Ben on the job to make sure he was safe in the parking lot and who came to our home to teach him how to bag groceries (from the options in my kitchen pantry!) He has worked about 20 hours per week for 7 years now. He is proud of his job and his managers always say he is their hardest worker. There have been bumps along the way, though. Sometimes employees and customers do not understand that Ben is hearing impaired or is a very concrete thinker. He is inflexible and his social skills are not great. On a few occasions I have had to facilitate conversations between him and his coworkers. Despite these issues, this job had been a great thing for him.

IDEA Part C—Early intervention services

Part C of the IDEA mandates early intervention services for disabled infants and toddlers (from birth to the child’s third birthday), and, in some cases, children at risk for developmental delays. These services are administered either by the school system or the state health department, and the services are usually provided in the family home. You can find out which agency to contact by asking the hospital social worker or by calling the special education director for your school district.

The law requires services not only for the eligible infant or toddler, but for the eligible family, as well. Therefore, an Individualized Family Service Plan (IFSP) is developed. This plan includes:

  • A description of the child’s physical, cognitive, language, speech, psychosocial, and other developmental levels
  • Goals and objectives for the family and child
  • The description, frequency, and delivery of services needed, such as speech, vision, occupational, and physical therapy; health and medical services; and family training and counseling
  • A caseworker who locates and coordinates all necessary services
  • Steps to support transition to other programs and services

At age 3, children are transitioned to the school district for assessment of the need for special education services. If eligible, the school district provides early childhood special education services. For more information, visit http://nichcy.org/schoolage/preschoolers.

Differences between IDEA and Section 504

  IDEA Section 504
Type of law A federal education law. A civil rights law.
Who is covered Children ages 3–21 whose disability affects their ability to benefit from general education. Part C covers infants and toddlers. Any student with a disability in an educational setting.
Types of disabilities Child must have one or more of the 14 disabilities listed in the law. Any physical or mental disability (including cancer) that substantially limits one or more major life activity.
Person in charge Special education director. Section 504 coordinator.
Evaluation of eligibility Several assessment tools are used to determine whether the child has a disability. Written consent from a parent or guardian is needed before evaluation begins. A reevaluation every 3 years is required. Evaluation is conducted in the area of concern. Written consent of a parent or guardian is not necessary before evaluation is done, but notice must be provided. Yearly reevaluation or review is required.
Tools used to implement law Individualized Education Program (IEP) and a Behavior Intervention Plan (BIP) for any child with a disability who also has a behavioral issue. Section 504 Plan.
Change in placement IEP meeting is required before any change in placement or services is made. Meeting is not required for a change of placement or services.
Due process School district must provide resolution sessions and due process hearings for parents/guardians who disagree with evaluation, implementation, or placement. School district must provide a grievance procedure for parents/guardians who disagree with evaluation, implementation, or placement; due process hearing is not required.
Section 504 of the Rehabilitation Act of 1973Individual Health Care Plan (IHCP)

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