Courtesy of CURESEARCH for Children's Cancer
Educational Difficulties Associated with Illness or Treatment
Treatments for cancer during childhood or adolescence can affect educational progress due to prolonged absences or reduced energy levels. In addition, some types of cancer may require therapy to control or prevent spread of the disease to the brain or spinal cord (central nervous system). This therapy can sometimes affect learning abilities. Parents and teachers should be aware of potential educational problems that may be related to cancer treatment so that children and teens at risk can be monitored closely and given extra help if needed.
Types of Educational Difficulties that May Be Experienced
The brain is a complex structure that continues to grow and develop throughout childhood and adolescence. Some problems may not become apparent until years after therapy is completed. Common problem areas include:
*Social situations, especially with children who are not aware of a child’s cancer
Factors that May Place Children and Teens at Increased Risk for Difficulties in School Include:
*Diagnosis of cancer at a very young age
*Numerous or prolonged school absences
*A history of learning problems before being diagnosed with cancer
*Reduced energy level
*Cancer treatment that affects hearing or vision
*Physical disabilities resulting from treatment
*Cancer therapy that includes treatment to the central nervous system
Who is at Risk for Developing Educational Difficulties?
Children treated for brain tumors are the most likely to have received treatments such as surgery and cranial radiation therapy that may affect academic abilities. Since treatments vary widely, not everyone who was treated for a brain tumor is at increased risk.
Cranial radiation is sometimes given to children with cancers other than brain tumors, such as some leukemias. Total body radiation, which includes the brain, is a common treatment for children undergoing certain types of bone marrow or stem cell transplantation. Cranial radiation treatment, especially at high doses, is a risk factor for educational difficulties.
There is some evidence that children treated with chemotherapy directly to the brain, such as intrathecal methotrexate or triple intrathecal therapy regimens, may be at increased risk, although the likelihood is less than for a child with a brain tumor.
Recommended Psychological Evaluation and Testing
The ideal recommendation is that any young person who is having difficulties in school should undergo a specialized evaluation by a child psychologist experienced in the types of issues faced by children with cancer. Children, who are doing well but are at risk for later educational difficulties because of their type of illness or treatment (any brain tumor), should also be evaluated to obtain baseline scores that can be compared to findings later. Parents and teachers should carefully monitor the educational progress of all children treated for cancer. Further evaluations may be necessary if the child begins having trouble in school or develops any of the problems listed above. In addition, repeat testing is often recommended at times when academic challenges are more likely to occur, such as at entry into elementary school, middle school, high school and during pre-college planning. The Children's Oncology Group recommends that children with brain tumors be evaluated.
Help with Educational Difficulties
If a problem is identified, special accommodations or services can be requested to help maximize the student's learning potential. The first step is usually to schedule a meeting with the school in order to develop a modification in the child's educational plan. This may be done in an informal manner, or it can be more formalized for public school students as a Section 504 Modification (504 Plan), which is covered by civil rights law. The more formal approach requires the public school to follow-through with the plan and allows for legal recourse if it is not adhered to. Private schools are not compelled to comply with such modifications, but are usually very helpful in making appropriate accommodations as needed.
Examples of strategies that are often helpful for children and teens with educational problems related to cancer treatment include:
*Seating near the front of the classroom
*Minimizing the amount of written work required
*Use of tape-recorded textbooks and lectures
*Use of a computer keyboard instead of handwriting
*Use of a calculator for math
*Modification of test requirements (extra time, oral instead of written exams)
*Assignment of a classroom aide
*Extra help with math, spelling, reading and organizational skills
*Duplicate set of textbooks to keep at home (should be done for any child with cancer during treatment)
Special Educational Services for Children with Cancer
Free, special educational services are available through public schools for all children, three years old through high school graduation, who have unique educational needs that interfere significantly with the child's ability to learn and make progress. These educational needs include children who are gifted, have special health care needs, children with special learning needs or children with developmental delay. These special educational services are mandated by federal and state educational law for students in every school district in the United States, and are delivered through the Department of Special Education in each district. Children in private schools may also receive these public special educational services at local public schools. Services may vary from modifications in the regular program to assistance by educational specialists at school for one or more periods to a special self-contained class or special school for the most intensive needs. Children with cancer may qualify for special education services under the category of "Other Health Impaired (OHI)."
In order to receive special education services, the parent and child need to go through the following steps.
Parents must formally request an Evaluation for Special Educational Services at the office of their child's public school. Parents must provide an explanation for why they are making the request. For private school students, this request is made at the office of the local public school the child would attend if he or she were in public school. This request should be made in writing to the school principal, vice principal or campus representative of special education services for the school district. The evaluation is to determine if your child will qualify for an Individualized Educational Plan (IEP) and special educational services.
Once the Request for Evaluation is received, it will be forwarded to the school district's Department of Special Education, which is responsible for all special educational services within the district. The school district must schedule an evaluation promptly (usually within 90 days). Evaluations include personal interviews with you and your child, psychological testing, direct observations, reviewing records, etc. The evaluation is typically conducted by a school psychologist employed by the school district, along with other relevant health specialists (e.g., occupational therapist, speech therapist, physical therapist, etc.). You may request that private psychological or neuropsychological test information from your child's medical center or a private evaluation also be included in the evaluation process.
Once the evaluation is completed, a meeting is scheduled at the school for parents, the student (depending on age and local approach), and the evaluation team from the school district. At this IEP Meeting, the entire group will determine if the child is in need of educational assistance and qualifies for special services. If the child qualifies for services, an IEP document will be prepared that clearly states exactly what services the child needs and what the concrete goals are for these services.
An IEP typically includes the following components:
*Assessment of the child's current level of educational performance
*Impact of the illness on learning, thinking, energy/fatigue
*Medical precautions and special needs (if any). For example: extra bathroom breaks, drinking water during class, snacks, limited sun exposure, modified physical education, monitoring of central venous access device, etc.
Statement of goals to be achieved under the IEP:
*Statement of educational services that the child needs
*Date the educational services will begin
*Description of the extent to which the child will participate in regular education programs
*Justification for the type of educational placement the child will have
*List of individuals responsible for the implementation of the IEP
*Objective criteria and evaluation procedures
If parents agree with the conclusions and the IEP, they may sign the document and it becomes a binding document that is reviewed at the end of each school year or whenever the parents or school feel something has changed.
If parents disagree with the findings and recommendations of the IEP meeting, they do not have to sign the document and they may appeal the process (called a Due Process Review). The appeal is a formal process that is designed to help resolve the dispute and make sure the child will receive whatever educational services he or she requires and is entitled to.
An annual IEP meeting is held to evaluate the child's progress and determine what services are needed for the coming school year. As needs change, services may be increased, decreased or stopped altogether.
Anytime the child's need have changed, or the parent does not feel the services are meeting the child's needs, the parent may request that the IEP team meet to evaluate these concerns further. Parents can bring people to the meeting, such as a hospital staff member or an educational advocate. This may be done any time during the school year.
If a child was receiving special education assistance prior to their medical diagnosis of cancer for any reason, such as a learning disability, their existing IEP may be updated to now account for new educational needs due to the illness. An IEP may also be useful for children who have been out of regular school for an extended time and need extra educational support so they are caught up with the other students in the class.