Legal rights regarding school

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 (IDEA 2004) and updated regulations published in 2006, 2008, and 2018 website: https://sites.ed.gov/idea/

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, called an Individual Educational Plan (IEP) 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. This testing can be done either by the school district or privately arranged by the family.

• 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 (1973). 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 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. Your healthcare team can provide a letter to outline recommendations for accommodations to support your child’s specific needs.

Special education in Canada

A similar special education process is in place 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.

Provincial guidelines are established 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 performed 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 required in the United States.

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.

Individualized education program (IEP)

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 with an IEP in place all specialized services are stipulated––such as small classes, home schooling, speech therapy, physical therapy, counseling, and instruction by special education teachers. 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 the following:

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

• 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

• Projected date when services/modifications will begin, and frequency, location, and duration

• Plans for standardized testing and graduation requirements

• 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 are not being performed. A written copy of the plan is given to the family.

Communication between parents and school system

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 communication deteriorates for whatever reason, and you feel your child’s IEP is inadequate or not being followed, there are several facts you need to know and steps to resolve the situation:

• 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.

For more information about IEPs, visit Center for Parent Information & Resources (CPIR) at https://www.parentcenterhub.org/ or American Childhood Cancer Organization website: www.acco.org. Download free copy of the book, Educating the Child with Cancer, A Guide for Parents and Teachers, 3rd ed. edited by Ruth I. Hoffman, MPH. See Resources end of chapter.

Canadian laws related to IEPs

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, meaning that all citizens are entitled to the same treatment by law.

Individualized transition plan

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 is 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. 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 s(he) reaches the age of majority, beginning at least 1 year before that date. Age of majority is determined by state statute.

Obtaining a high school diploma usually requires passing a certain number of specified courses. Students sometimes need changes in the required courses for graduation, for example, a deaf student might ask that the foreign language requirement be waived or that fluency in sign language be allowed to substitute for foreign language proficiency. Some students need extra coursework to make it through high school, such as special instruction in computers 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 s(he) has completed all of the objectives set out in his IEP for graduation. Passing a series of four tests (language arts, math, social studies and science) called the general educational development (GED) may be an option for other students. Passing these four tests demonstrates the student has the same knowledge as a student attending 4 years of high school. The GED is a 7-hour test and generally takes a year or more for a student to prepare for the test. The GED test can be taken any time after age 16. Most colleges and employers view the GED and high school diploma the same.

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 vocational/technical 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 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 credits/courses in summer school or via correspondence or online courses.

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