Childhood cancer and its treatment can leave survivors with unique educational needs. Treatments that sometimes affect school performance are brain radiation, brain surgery, intrathecal methotrexate, and high-dose systemic methotrexate. Chapter 8, covers these possible late effects in detail. In addition to these treatments, learning potential can be impacted by numerous or lengthy hospitalizations, persistent fatigue, hearing or vision loss, fine or gross motor impairments, and social difficulties.

Comprehensive follow-up clinics have skilled personnel who help families work with school systems to get the best possible education for their children. But many individuals and families do not have access to these resources and must navigate the special education system on their own. You have many legal rights, and knowing what they are can help you advocate for yourself or your child.

Legal rights

The Individuals with Disabilities Education Act (IDEA) requires every public school to provide a free and appropriate education in the least restrictive environment to all disabled individuals between the ages of 3 and 21. That means providing, without charge, special education programs, speech therapy, occupational therapy, physical therapy, psychiatric services, assistive communication techniques and technology, and other interventions as needed to help children learn. This law has been extended and modified by the Individuals with Disabilities in Education Improvement Act of 2004 and updated regulations published in 2006, 2008, and 2011 (see http://idea.ed.gov/explore/home ). The major provisions of these laws are the following:

• All children, regardless of disability, are entitled to a free and appropriate public education and necessary related services. Schools are required to provide an individually designed instructional program for every eligible child, including early intervention programs for at-risk toddlers.

• Children will receive fair testing to determine if they need special education services.

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

• Children with disabilities will be educated in the least restrictive environment possible, usually with children who are not disabled.

• The decisions of the school system can be challenged by parents, with disputes resolved by an impartial third party.

• Planning for transition to postsecondary schooling, work, or independent living must start by the time the student turns 16, or younger if appropriate.

• Parents have the right to withdraw consent for special education and related services, but they must do so in writing.

These laws cover survivors of cancer whose medical problems affect their educational performance, and eligibility is usually obtained using the categories known as “other health impaired,” “traumatically brain injured,” or “learning disabled.” Special education services are also available if the child’s medical condition limits energy, alertness, or strength. Many survivors do not need special help in school, but those who do have a legal right to it.

Children on and off treatment may also be eligible for services and accommodations under Section 504 of the federal Rehabilitation Act. This law applies when the child does not meet the eligibility requirements for specially designed instruction but still needs accommodations (provided through a “504 Plan”) to perform successfully in school. For example, special accommodations to address health needs can include a water bottle on the desk, reduced homework during periods of illness, waiving regular attendance/tardy policies and procedures, or allowing additional time to get to class. Another example is that a child off therapy with cognitive impairments that do not meet the IDEA requirements might need to have accommodations that eliminate timed tests or provide more time to finish written assignments.

The Canadian special education process is very similar to that used in the United States. Provincial guidelines are set down by the national Ministry of Education and governed by the Education Act, but most decisions are made at the regional, district, or school level. Evaluations are done by a team that may include a school district psychologist, a behavior specialist, a special education teacher, other school or district personnel, and in some cases a parent, although the latter is not required by law as it is in the United States.

In Canada, children between the ages of 6 and 22 may qualify for special education assistance under the Designated Disabled Program (DDP), the Special Needs Program (SNP), or the Targeted Behavior Program (TBP), depending on the evaluation.

A full range of placement options is available for Canadian students, from home-based instruction to full inclusion. Students from rural or poorly served areas may receive funding to attend a day program outside their home area.

Referral for services

The steps necessary to obtain services in the United States are referral, evaluation, eligibility, development of an individualized education program (IEP), annual review, and triennial assessment.

Parents or teachers can make a referral by writing the school principal to request special education testing. Some school districts automatically set up an IEP for any child who had cranial radiation during cancer therapy, while other school districts are extremely reluctant even to evaluate struggling children for possible learning disabilities. Therefore, it is best for the parent or physician to send a written request to the principal, stating that the child is “health impaired” due to treatment for cancer, listing the child’s problems, and requesting assessments and an IEP meeting.

Once the referral is made, an evaluation is necessary to find out if the school district agrees that the child needs additional help, and if so, what types of help would be most beneficial. Usually a multidisciplinary team—consisting of the teacher, district psychologist, speech and language therapist, and resource specialist—meet to administer and evaluate the testing. Your written consent is required prior to your child’s evaluation, and you have the right to obtain an independent evaluation if you believe the school’s testing is biased or flawed in any way. However, you may be responsible for this cost. The evaluation usually includes a review of educational, medical, social, and psychological status.

Survivors of childhood cancer at risk for learning difficulties require neuropsychological testing, which is best administered by psychologists experienced in testing pediatric patients. Most large children’s hospitals have such personnel, but it sometimes takes very assertive parents to get the school system to use these experts. If you pay for the neuropsychological evaluation, you choose how much of the information to share with the school. You can cover portions that you wish to remain confidential and copy the rest to give to the team.

After the evaluation, a conference is held to discuss the results and reach conclusions about what actions will be necessary in the future. Parents should attend this meeting and can bring a doctor, therapist, educational liaison, professional advocate, or friend with them. Make sure that in all written correspondence with the school, you clearly express your desire to be present at all meetings and discussions concerning your child’s special education needs. You know your child best and have the right to be there. The school can still have the meeting if you choose not to attend or if you do not show up.

Individualized education program

The IEP describes the special education program and any other related services specifically designed to meet the individual needs of a child with learning differences. It is developed collaboratively between parents and educators to determine what the student will be taught, and how and when the school will teach it. Students with disabilities need to learn the same things as other students: reading, writing, mathematics, science, history, and other preparation for college or vocational training. The difference is that, with an IEP in place, specialized services—such as small classes, home schooling, speech therapy, physical therapy, counseling, and instruction by special education teachers—are stipulated. These services are available to children with subtle learning difficulties, not just those with severe late effects. Parents must monitor the situation to make sure stipulated services are actually provided.

The IEP includes:

• Parental concerns, medical history, and information about the disability.

• A statement of present levels of academic achievement, social, behavioral, and physical functioning, academic performance, and learning style.

• Annual goals, objectives, benchmarks, and methods of evaluation.

• Services that will be provided and any program modifications or supports for school personnel that will be provided.

• The projected date when services/modifications will begin, and their frequency, location, and duration.

• Plans for standardized testing and graduation requirements.

• A description of the least restrictive setting in which the above goals and objectives can be met.

• Any individual accommodations needed for state and district-wide assessments.

• A statement of parental rights and responsibilities.

At least once a year, and more frequently if requested by a parent or teacher, a meeting is held (which your child can attend) to review the progress toward meeting the short- and long-term goals and objectives of the IEP. Some states have limits on the number of IEP meetings per year.

Someone from the school system is appointed to carry out and monitor each part of the IEP. However, the parent needs to know what it contains and work with the school if included services aren’t being performed. A written copy of the plan is given to the family. It is best to create a positive relationship with the school so you are able to work together to promote your child’s well-being. If, for whatever reason, communication deteriorates and you feel your child’s IEP is inadequate or not being followed, there are several facts you need to know:

• Changes to the IEP cannot be made without parental consent.

• If parents disagree with the school about the content of the IEP, they can either withdraw consent and request (in writing) a meeting to draft a new IEP, or they can consent only to portions of the IEP with which they agree.

• Parents can request to have the disagreement settled by an independent mediator and hearing officer.

• Parents can hire a special education advocate—a person with special training and expertise whose profession is helping families get appropriate special education services for their child. The advocate will attend all meetings and give advice about legally mandated services and how to obtain them.

IEPs in Canada are almost identical to those used in the United States. In Canada, the IEP is updated yearly, or more frequently if needed. A formal review is required every 3 years. In Canada, if disputes arise between the school or district and the parents, the School Division Decision Review process is available to resolve them. The concept known as due process in the United States is usually referred to as fundamental justice in Canada.

Although some disabilities are physical and visible, others (such as educational and social competence) may not be as obvious. To help children and teens reach their true potential, changes in intellectual functioning and social skills must be diagnosed early and addressed.

For more information about IEPs, visit http://nichcy.org/schoolage/iep/iepcontents. In addition, parents and teachers can obtain a free copy of the book Educating the Child with Cancer, 2nd ed. from the American Childhood Cancer Foundation ( https://acco.org/Information/Resources/Books.aspx) .

Individualized transition plans

Special education students also have a right to be prepared for graduation, higher education, and work—in ways that fit their needs. For some survivors, extra support will be needed to make the transition from high school to adulthood go smoothly. Under IDEA 2004, when a student with an IEP turns 16, the annual IEP meeting must include discussion about transition service needs, and the child must be invited to attend. In Canada, IEPs must include a transition plan for students ages 14 years or older. The statement of transition goals and services must be written into the IEP.

Transition plans should include the following:

• Desired post-school outcomes

• Necessary documents and support services

• List of transition resource team members

• Career preparation activities

• Transition services for instruction, community experiences, employment, post-school living, and daily living skills

• Vocational evaluation

• Summary of agency responsibilities

• Summary of designated instruction and services for transition

• A statement about the rights that will transfer to the child when she reaches the age of majority, beginning at least 1 year before that date

Obtaining a high school diploma usually requires passing a certain number of specified courses. Students sometimes need to have changes in the graduation requirements—for example, a deaf student faced with a foreign language requirement might ask that the requirement be waived or that fluency in sign language be allowed to substitute for foreign language proficiency.

Some students will need extra coursework to make it through high school, such as special instruction in keyboarding or study skills. These abilities will also help with higher education or future employment.

Some students will not be able to earn a regular diploma. A special form of graduation called an IEP diploma is also available. If a student earns an IEP diploma, that means he has completed all of the objectives set out in his IEP for graduation. Passing a series of five tests called the general educational development (GED) tests may be an option for other students. In the United States, many states have implemented high school exit exams that must be passed to graduate. In some states, exemptions are available for students with an IEP or 504 Plan.

Students planning to attend trade school, a 2-year community college program, or a 4-year (or longer) college program need information far in advance about which high school courses will be required for admission. This is especially important for those students with disabilities who carry a lighter course load, as they may need to make up some credits in summer school or via correspondence or online courses.

Transition programs should address the move from high school to trade school, community college, or a 4-year college program. Students are eligible for publicly funded education and/or services until age 22, if needed.

Vocational training

Preparing for the world of work means gaining appropriate skills, such as typing, filing, driving, filling out forms, and using tools. These skills may be gained in school-based vocational-technical classes, in classes taken at a community college or vocational school while the student is still in high school, in a union- or employer-sponsored apprenticeship program, in an internship, or on the job. Vocational planning is mandatory for special education students in the United States by age 16 as part of an Individualized Transition Plan, but it should begin much earlier.

Transition-to-work services may include moving into the public vocational rehabilitation system, which trains and places adults with disabilities into jobs. However, in many states, the vocational rehabilitation system is severely overloaded, with waiting times for placement ranging from 3 months to as much as 3 years. Typical opportunities range from “sheltered workshop” jobs (e.g., sorting recyclables, light assembly work) under direct supervision to supported placement in the community as grocery clerks, office helpers, factory workers, and the like. Often the survivor works with a job coach, a person who helps her learn work skills and how to handle workplace stresses. In some cases, the job coach goes to work with the person for a while.

School districts may sponsor their own supported work opportunities, such as learning how to run an espresso coffee cart or working in a student-run horticultural business. Many schools have vocational programs that give students a chance to have a mentor in their chosen field, and that may include actual work experience with local employers.

Some public and private agencies may also be able to help with job training and placement, such as the state employment department, the Opportunities Industrialization Commission (OIC), and the Private Industry Council (PIC). Goodwill Industries operates a job placement service in many larger cities, as well.

Students with disabilities should receive appropriate vocational counseling, including aptitude testing, discussion of their interests and abilities, and information about work possibilities. Parents need to ensure that students with the potential to do higher level work are not shunted into jobs that will leave them financially vulnerable and possibly unhappy as adults.

Every state has a vocational rehabilitation agency that provides services to individuals in the state where they live. The federal Rehabilitation Act requires states to provide the following minimum services:

• Evaluation of potential for rehabilitation

• Counseling

• Placement services

• Physical accommodations (the state does not have to provide equipment but does have to help determine what equipment is needed)

Some states have vocational rehabilitation scholarship money that provides an amount comparable to tuition at a state university that can be used for vocational training. They also provide information about private vocational rehabilitation programs within the state. The Rehabilitation Act requires that state vocational rehabilitation agencies work with schools to provide transition from high school to the workplace for youth with disabilities. For information about accommodations on the job, you can contact the Job Accommodation Network at (800) 526-7234 or http://askjan.org.

The U.S. Department of Education website lists the locations of all state vocational rehabilitation agencies. If you think your state is denying you or your child appropriate rehabilitation services, you can file a complaint with the U.S. Department of Education, Rehabilitation Services Administration, Office of the Commissioner, Office of Special Education and Rehabilitation Services, 400 Maryland Avenue SW, Washington, DC 20202, (202) 245-7488.

Extremely disabled survivors

Some survivors, primarily those who had brain tumors, can suffer devastating late effects that leave them unable to work or live independently. Families dealing with this situation face a difficult future, one that is not often discussed. In some cases, nothing can be done to improve the survivors’ functioning, and families may feel isolated and desperate. They must cope with complex medical, social, and psychological issues because so many body systems can be affected by tumor location, extent of surgery, and cancer treatment to the brain. They must seek out professionals to meet all of the survivors’ needs and are often frustrated by the many gaps in services. This can be a relentless and exhausting job.

In some communities, parents can find resources that address their needs, while in other locations they are on their own. One method of support is finding respite care, which allows parents or guardians to have a break from caring for their child. This can be arranged through local social services, regional programs for the developmentally disabled, or privately. Some families network and take turns taking small groups of survivors on outings.

One way for caregivers to get respite time is to try to link the disabled survivor with a part-time job or a volunteer position that matches an area of interest. Some examples are walking dogs in the neighborhood, working with animals at farms or shops, or helping at a daycare center. These jobs allow the survivor to earn money and improve self-esteem, as well as provide a connection to the community.

Parents can check into local head injury groups to see if they have organized outings or know about local resource organizations that might help. Some comprehensive follow-up clinics provide monthly activities for adult disabled survivors. In some areas, social groups have been established to provide a social community for disabled survivors.

Parents may also need help to ensure that a plan (such as a limited conservatorship) is in place to care for their adult child if they are no longer able to do so. Making arrangements prior to illness or old age with the help of an attorney who specializes in estates and trusts can ease parents’ minds about this most crucial transition.

College for disabled survivors

Most survivors have no cognitive difficulties and continue their education through the level they would have reached if cancer had not been part of their lives. However, survivors with cognitive late effects may need some help applying for and attending college. They need to carefully evaluate colleges and apply to those that will best address their special needs.

When visiting colleges, consider any special needs you have and talk to admissions personnel or staff members in the disabled student services office (every college and university has such an office) about any additional help you may require. Survivors with disabilities that affect mobility may need to pre-plan class times to allow for crossing campus to get to classes. Some colleges offer learning-disabled students special studies majors (designed around the student’s strengths), special help (e.g., untimed tests, tutoring, notetakers), a lighter class load, or waivers from course requirements. See Appendix B, for books about colleges for learning-disabled students, and visit the Learning Disabilities Association of America’s website at www.ldanatl.org.

It’s against the law to deny admission to students based on disabilities; of course, other admissions criteria generally must be met. Public universities and community colleges may waive some admissions criteria for disabled students on a case-by-case basis if the students can show they are capable of college-level work. For example, if a student’s poor hand/eye coordination made getting a high score on the SAT ^® or ACT ^® exam difficult, but the student will have a classroom aide available at college to make up for this problem in class, he might be admitted despite the low score. Standardized test requirements might also be set aside if high school grades or the student’s work portfolio look good.

Schools that normally require all freshmen to live on campus may waive this requirement for a student with special needs. If living at home is not an option, a group home or supervised apartment near campus might be. Before your child leaves for college in another city, make sure you have secured safe and appropriate housing, found competent local professionals to provide ongoing care, and rehearsed daily life activities such as grocery shopping and visiting the laundromat. You’ll also want to work out a crisis plan with your child, just in case a problem arises. She needs to know whom to call and where to go in case of an emergency.

Paying for college

Paying for college is difficult for many families. For most students, with or without disabilities, the best place to start is at the financial aid office at the colleges being considered. A discussion with the high school guidance counselor may also yield information about scholarships. A frequently updated list of scholarships for survivors can be found at www.ped-onc.org/scholarships.

The following organizations provide information about ways to pay for college:

• Federal student aid programs (http://federalstudentaid.ed.gov) provide various types of student loans.

• FastWeb (www.fastweb.com) is an Internet site that matches individual students with eligibility requirements for more than 1.3 million scholarships. It also contains a college directory of more than 4,000 schools, with information about admissions, financial aid, and other topics.

• HEATH Resource Center (www.heath.gwu.edu) is a national clearinghouse for post-secondary education for individuals with disabilities.

• The American Cancer Society at (800) ACS-2345 can connect you with its state affiliates, some of which sponsor scholarships for survivors, or you can check the website at www.cancer.org (search for “college scholarships”).

  If you can’t find scholarships, you could help start a scholarship fund through your child’s cancer treatment institution. My daughter’s treatment hospital has just such a fund—and gave out 17 or so scholarships last year.

  • • • • •

  In my searching last year for cancer-related scholarships, I found no “universal” scholarships, that is, ones that any survivor could apply for. There are scholarships available through individual high schools and universities that look for individuals who have “overcome adversity.” Tell the high school counselor that you’re interested in these kinds of scholarships. There is also a trend at some private schools to have a single scholarship application that the scholarship committee then uses to distribute scholarship funds. These often require an essay. The essay is a good place to write about cancer survivorship issues.

Many scholarships are given for unique endeavors or obstacles overcome. You may wish to take advantage of these opportunities to share with the college of your choice the values and perspectives you gained from facing and overcoming cancer.