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.

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.

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

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.

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.

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?

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.

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.

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

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

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

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.