The cornerstone of all federal special education laws in the United States is the Individuals with Disabilities Education Act. This law, first passed in 1990, has been amended several times. It covers children and their families from birth to age 3, preschoolers, and students up to age 22 who have not received a high school diploma. Under the IDEA:

•  All children, regardless of disability, are entitled to a free and appropriate public education and necessary related services provided in the least restrictive environment.

•  Children are entitled to a fair evaluation to determine their need for special education services.

•  Parents of a child with disabilities participate in the planning and decision-making for their child’s special education.

•  Parents can challenge decisions made by the school system, and disputes will be resolved by an impartial third party.

Several online sources provide reliable information about learning disabilities and parental rights under the IDEA and Section 504. Reputable websites include Wrightslaw (www.wrightslaw.com), the National Center for Learning Disabilities (www.ncld.org), and LD Online (www.ldonline.org).

Referral for services

The first step to getting educational support is to submit a written “referral for services” letter. A parent or a child’s teacher can make a request for special education testing. Do not ask for a referral verbally; testing and services must be requested in writing. Obtain written, dated acknowledgement of the school’s receipt of the request, because school staff are legally required to hold a meeting within 30 days of receiving the request.

The next steps in the special education process are evaluation, eligibility, development of an individualized education program (IEP), annual review, and 3-year assessment. You will need to become an advocate for your child as your family goes through the steps to determine what placement, modifications, and services your child is entitled to.

Evaluation

Once the referral is made, an evaluation is needed to determine whether the child qualifies for services as a student with a disability. Usually, a team composed of a general education teacher, special education teacher, district representative, and others (e.g., school nurse) attend the first meeting. It helps immensely to have the liaison from the hospital present to make sure the IEP team fully understands the child’s illness, treatment, and impairments. The evaluation usually includes educational, medical, social, and psychological areas.

Most children treated for cancer should have a thorough neuropsychological evaluation, which is best administered by pediatric neuropsychologists 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 third-party practitioner, which is paid for by the school district.

Children may also be evaluated to determine 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.

From the time the parents agree to the evaluation, school districts have 60 days to complete the evalution and present the findings. Parents attend a meeting with the IEP team to discuss the evaluation results and make a determination about whether a child is eligible for services. Students can be included in this meeting, although younger children most often are not.

Eligibility for special education

The IDEA requires that students 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 access the general education program. The 14 eligibility categories for special education 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 solid tumors qualify for services under the category of OHI and often a secondary eligibility (e.g., hearing impairment, speech or language impairment, orthopedic impairment).

Individualized education program (IEP)

After eligibility is determined, a meeting is called to develop an IEP. The IEP team attending this meeting includes the parent(s), the student’s regular education teacher, a special education teacher, a representative of the school district, someone who can interpret the instructional implications of the evaluation results, the student (when appropriate), and any other person with knowledge or special expertise regarding the child.

Attending an IEP meeting can be intimidating (because school personnel usually outnumber the parents) and emotional (because it can be difficult to discuss evaluation results and additional challenges facing your child). You are entitled to bring another adult with you as an advocate, to take notes, or simply to observe. This meeting is an opportunity to involve the hospital’s school liaison to make sure that all meeting participants understand the child’s current and past medical issues and that they use that information to write the IEP goals.

The IEP should describe in detail the special education program and any other related services that need to be provided to meet the individual needs of your child. The IEP describes what your child is to be taught, how and when the school is to teach it, and any educational accommodations that will be made.

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

The IEP has five parts:

1. Present level of performance. This section describes 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 and how progress will be assessed. 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 to be provided at no cost to the family can be mandated in the IEP, including the following:

• Speech therapy
• Physical therapy and adaptive physical education
• Occupational therapy
• Social skills training
• Mental health services
• Assistive technology assessment and training
• Functional behavior assessment and behavior intervention plans
• 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 provided in a group or individual setting, for example, “Jane will receive individual speech therapy twice a week, for 60 minutes a session, from September through December, when her needs will be reevaluated.”

As discussed in Chapter 16, Common Side Effects of Treatment, 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 through the school system. To obtain these services, parents should provide letters of medical necessity from individual therapists and physicians and present them as supporting documentation during the IEP meeting.

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 general education 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 amount of time (minutes or hours) the child will be in the general education program and the frequency and duration of any special services.

5. Evaluating the IEP. Meetings with all members of the IEP team will be held periodically to review your child’s progress toward attaining the short- and long-term goals and objectives of the IEP. To determine whether the IEP is working for your child, an annual IEP meeting is required, but 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:

•  The IEP cannot be changed 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 that the disagreement be settled by an independent hearing officer in an administrative law proceeding called a due process hearing. School districts generally are represented by a lawyer at such hearings, and parents are usually best served in such proceedings by hiring a lawyer or educational advocate.

•  An IEP is a legal document that schools are legally required to comply with. However, if a school does not comply with an IEP, there is no governmental agency parents can call upon to enforce it—the only enforcement mechanism is a due process hearing.

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

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

•  Preferential seating

•  Study groups with discussion for learning/memory

•  Recording of classes for reinforcement

•  Books on tape or CD

•  A copy of notes from a peer to improve listening in class and reduce the need for writing

•  A copy of a teacher’s planning notes prior to instruction

•  Shortened assignments

•  Use of a computer for written assignments

•  Keyboard training (kindergartners are not too young to learn)

•  Use of graphic organizers

•  Use of a calculator or number line

•  Extended time for tests

•  Oral rather than written tests

•  An assignment check-off system

•  Breakdown of large assignments into steps

•  Extra time to travel between classes

•  Accessible locker

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

Transition services

Students receiving special education services receive transition planning, starting by the time the child is 16 (or younger if determined by the IEP team or required by state law). This planning helps to prepare for life after high school, in higher education, vocational training, employment appropriate to their abilities, or adult services. Your child’s IEP should outline actions that will be taken to prepare your child to transition from high school to college, vocational school, or life in the community. High schools in in the United States may have a Department of Rehabilitative Services (DRS) vocational counselor on staff to help 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 infants and toddlers (from birth up to age 3) with disabilities, and, in some cases, children at risk for developmental delays. These services are administered either by the school district or the state health department, with the services usually provided in the family home. You can find out which agency to contact by asking the hospital social worker or calling the special education director for your school district.

The law requires services not only for eligible infants and toddlers, but for their families, 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 to be provided, 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

•  By age 3, children are transitioned to the school district for assessment of the need for special education services. If the child is eligible, the school district provides early childhood special education services. For more information, visit www.parentcenterhub.org/repository/preschoolers.