Two federal laws protect the education rights of children ages 0 to 22 who have disabilities that affect education—Section 504 of the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act (IDEA). These laws guarantee every public school student the right to education regardless of physical, mental, or health impairment. Every state has a department of education website that describes state guidelines about how these laws are implemented and ways to obtain more information.

Examples of impairments affecting school performance that may develop during or after treatment for childhood leukemia include the following:

• Problems with small motor and gross motor skills (temporary or permanent) due to vincristine neuropathy
• Learning disabilities
• Difficulties with attention
• Slow processing speed
• Post-traumatic stress, depression, and anxiety
• Hormonal issues (e.g., chronic fatigue)

No matter how good your relationship is with the school, any services needed by your child should be documented in a written and signed Individual Education Plan (IEP) or 504 Plan (see information about both below). A written plan will document your child’s legal right to services and accommodations, and if your family moves, the new school will be legally required to follow the former school’s plan until a new one is agreed upon and put into place.

Section 504 of the Rehabilitation Act of 1973

Some children are eligible for services under Section 504 of the Rehabilitation Act whether on or off treatment. Commonly referred to as Section 504, this civil rights law prohibits discrimination against any individual with a physical or mental impairment that substantially limits one or more major life activity. Section 504 comes into play when a student with a disability attending a public school—or any private school, college, or university that receives federal funds—needs accommodation to access the educational opportunities available to children who are not disabled. Children who do not need special education services can be eligible for an educational plan under Section 504.

The school’s Section 504 team determines whether a child is eligible for a 504 Plan based on information from a variety of sources, including the findings and recommendations of the treatment team about how the illness and treatment affect school participation. For example, a child being treated for leukemia might need a Section 504 Plan that provides:

• Exemption from regular attendance/tardy policies
• A school-based health plan
• Reduced homework when ill or hospitalized
• Occupational and/or physical therapy

Section 504 can also be used when a student who is off treatment has disabilities that do not meet the requirements of the IDEA but do limit one or more major life activity. For example, a student who has fine motor problems might need a 504 Plan to obtain accommodations such as physical therapy, a note taker, and less written homework than other students. Schools are not required to provide a written 504 Plan, but parents should request a written plan that specifically lays out all of the accommodations and educational services to be provided to the student. The approved plan should be signed by school personnel and parents.

My 14-year-old daughter has some difficulties in school related to organization and memory (e.g., remembering to turn in homework on time). She got her first 504 Plan in second grade that provided a tutor for two hours for every day of school that she missed. It carried over to middle school, and they sent a special ed teacher who came by the house once a week to check on assignments, which was a big help. In middle school, I found out that they kept her in from recess once for not turning in an assignment, so we modified the 504 Plan to say that she would not be punished or marked down as long as she took all tests and turned in all assignments by the end of each semester. That way, if she forgot something, she could turn it in late and still get credit. In high school, we’ve had been a bit more trouble in implementing the 504 Plan. So, she’s going to have a neuropsych exam so we can figure out her strengths and challenges and work with the school to get her any accommodations she needs to succeed.

Individuals with Disabilities Education Act (IDEA)

The cornerstone of all federal special education laws in the United States is the IDEA. This law, first passed in 1990, has been amended several times—most recently in 2009. 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.

Our son has multiple late effects from his chemotherapy, radiation, and stem cell transplant. The school system was great about providing physical therapy, occupational therapy, and speech therapy. However, 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 him 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 parental rights under the IDEA and Section 504. Reputable websites include Wrightslaw (www.wrightslaw.com), 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 by hand or mail a written hard copy “referral for services” letter (not an email). A parent or a child’s teacher can make a request for special education testing. Don’t ask for a referral verbally; testing and services must be requested in writing. Obtain a 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.

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 asked 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, development of an 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 the placement, modifications, and services to which your child is entitled.

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 suggested a special developmental preschool 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.

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 most often includes educational, medical, social, and psychological information.

All young children treated for leukemia should have a thorough neuropsychological evaluation. This is best administered by pediatric neuropsychologists experienced in testing children with cancer. This evaluation is usually done by the hospital where the child is being treated, not by the school. 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, occupational 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 two 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.

From the time the parents agree to the evaluation, school districts have 60 days to complete the evaluation and present the findings. Parents attend a meeting with the IEP team to discuss the evaluation results and make a decision 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) because 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 leukemia qualify for services under the category of OHI.

Destiny (age 11) has some long-term effects from her treatment with high-dose chemotherapy, cranial radiation, and transplantation. Her learning ability (in particular, comprehension and short-term memory) has been affected. The special ed department at the school told us she was entitled to extra help because of her “other health-impaired” status. Destiny is in a general education classroom setting, but a special education teacher comes into the room several times daily to give extra help to the kids who need it. Examples of services are: helping with problem solving (especially math), giving her extra time to do work, as well as allowing her to repeat tests that she didn’t perform well on. We have found this to be a great help in Destiny’s education. She is now making As and Bs as well as exhibiting a more positive attitude toward school in general.

Individual Education Plan (IEP). After eligibility is determined, a meeting is called to develop an IEP. The IEP team attending this meeting includes the parents, 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 most often outnumber the parents) and emotional (because it can be difficult to discuss evaluation results and extra challenges facing your child). You are entitled to bring others with you as an advocates, to take notes, or simply to observe. Bringing a friend or two provides moral support. It is also very helpful to invite the hospital liaison or a professional advocate because they understand the lingo, which can seem like a different language, and they can help you understand how schools rate and rank test results. The hospital’s school liaison will also ensure that all meeting participants understand the child’s current and past medical issues and that they use that information to write the IEP goals.

An advocate is usually someone who has a great deal of experience navigating through the process and how the process works. In our case, after the first meeting with the team, we knew we needed one. We didn’t understand the jargon used by the school, we didn’t understand why they didn’t accept any of the results of the neuropsych report, and we came out of the meeting feeling like we’d been sucker punched. I know that some areas offer free advocates, though in our area there was a long wait to obtain one. Wrightslaw has a page about how to find an advocate at www.wrightslaw.com/info/advo.referrals.htm. Sometimes attorneys will work as advocates, but we chose someone who had previously been a school psychologist. She is very pleasant and very knowledgeable. Her help has been indispensable. We would have never been able to get our child qualified for services without her. I know not every school district is like ours, but with budget constraints, our district fought tooth and nail against everything.

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 vocational training, jobs, or college. The difference is that with an IEP in place, many specialized services—small classes, classroom aide, resource room, physical therapy, 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 can be mandated in the IEP, including the following:

• 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 physical therapy twice a week, for 60 minutes a session, from September through December, when her needs will be reevaluated.”

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 should 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.

Once signed by the school and the parents, the IEP becomes a legal document that the school is required to implement as written.

I recommend that no parent ever sign the IEP documents until they have had a chance to take them home and reread them a couple of times. We had an advocate, who would take the pages and comb through them. I don’t remember ever having an IEP that didn’t have at least one error in it. Sometimes it was easily fixed (like they mixed up the percentage of time in general ed classroom and special ed classroom) but sometimes we really wondered if the “error” was on purpose—like we agreed in the meeting to 30 minutes of reading assistance with a reading specialist three times a week and the IEP indicated 20 minutes per session. Had we signed the documents without review, we would have lost 30 minutes a week of specialized assistance.

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 IEP process was more difficult, and more psychologically damaging, than my daughter’s cancer treatment. Although we provided a detailed report of her neuropsychological evaluation that included specific recommendations for the type of reading instruction proven to work with children with her deficits, the school said it did not use those nationally recognized interventions. She was subjected to testing at the beginning and end of each school year, but different types of tests were used each time, so we could never make an apples-to-apples comparison of results. After four years, I placed her in a private school for students with learning disabilities, where she is flourishing. To this day, she dissolves into tears if pulled out of class for educational testing without prior notice, but she has no problem going back for checkups at the hospital where she was treated for cancer.

The 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 figuring out which options best suit your child, but 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. I learned that the IEP is only as valuable as the teacher who is applying it.

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 in-class and homework 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
• Extended time for tests
• Oral rather than written tests
• An assignment check-off system
• Breakdown of large assignments into a series of smaller steps
• Extra time to travel between classes
• Accessible locker

To learn about other accommodations, visit www.wrightslaw.com/info/fape.accoms.mods.pdf.

Transition services. Students with an IEP receive transition planning, starting by the time the child is 16 (or younger if determined by the IEP team or required by state law). Your child’s IEP should outline actions that will be taken to prepare your child to transition from high school to college, vocational training, supported employment, or adult services. High schools may have a post high school program that teaches special education kids job and life skills. In some districts, post high school is a separate school, in others it is held in a special section of the high school.

High schools 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 the school can connect the student with the DRS as part of the student’s transition services. The DRS can provide:

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

The transition IEP should include specific goals and ways to attain them (e.g., course-work, training, employment counseling), including who will provide these services. 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. In these cases, services are 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 Individual 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, 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.