Your Child and the Individualized Education Program (IEP)

by Ruth Hoffman
Source: Spring 2000 CCCF Newsletter

Candlelighters national office receives numerous calls each week from parents whose children appear to be experiencing learning difficulties at school, as a late effect from their cancer treatment. A variety of learning problems have been correlated with brain trauma as a result of cancer treatment, particularly for brain tumors (radiation and/or surgery), and also high dose methotrexate – a chemotherapy treatment, often used in the treatment of ALL. Parents wish to know how they can obtain special education for their child. The federal government has mandated formalized educational programs for special needs children, called “IEP” (Individualized Education Program). This feature article will lead parents through the steps required to take advantage of this federal program.

Special education is instruction that is specially designed to meet the special needs of children who have disabilities. These may include the disabilities that are associated with the late effects of childhood cancer treatment. The definition of special education comes from the Individuals with Disabilities Act (IDEA), Public Law 105-17. This law lists 13 different categories under which a child may be found eligible for special education services. Many of these categories can include after effects from cancer therapy, including hearing impairment, specific learning disabilities (such as short term memory problems that are sometimes associated with high dose methotrexate treatment), visual impairment (e.g. retinoblastoma), as well as traumatic brain injury. According to the IDEA, the disability must affect the child’s educational performance in order to qualify for an IEP.

The first step to find out if your child has a disability is to ask the school to do an evaluation. The school does not have to evaluate your child just because you asked them to, but if they do refuse to do so, they must notify you in writing of this decision and also indicate why your request was refused. If this occurs, you can respond by asking the school system for information about its special education policies as well as parental rights to disagree. Ask for specific steps that parents can take to challenge this decision. Secondly, get in touch with your state’s Parent Training and Information (PIT) center. This valuable resource provides information on special education, rights, responsibilities and the law. A listing of the State PTI information is available on the State Resource Sheet, obtained by contacting the National Information Center for Children and Youth with Disabilities (NICHCY) at: 1-800-695- 0285. If the school requests that your child be evaluated, because of a concern that your child has a disability, then the school must evaluate your child at no cost to you. Before proceeding, the school must ask for your informed written consent. You, as a parent are entitled to be part of this evaluation process as are individuals such as psychologists that are invited to the process by either you or the school. If the school is not equipped with required qualified specialists such as speech therapists or other medical specialists, then the school must make the arrangements to have the child evaluated outside of the school. Again, all of these evaluation procedures are to be completed without cost to the family. Note that under IDEA, a child may NOT be found eligible for services if the determining factor is due to the child having limited English proficiency or due to a lack of previous instruction in math or reading. Time away from school due to cancer treatment does not qualify your child as having a special disability requiring special education, according to IDEA classification guidelines.

After evaluation is complete and your child is found to be eligible for special education, then the next step is to write what is known as an Individualized Education Program – or what is referred to as an IEP. This must be done within 30 days of completion of the evaluation. The IEP will involve a team of individuals who will work towards the following two general aims: 1/ to set reasonable learning goals for your child and 2/ to state the services that the s chool district will provide for your child. The focus of the IEP will be on methods available to facilitate learning of the general curriculum as much as possible. Most IEP program place an emphasis on integration of the child into as many regular classes and activities in the school as possible, with special attention placed on enhancing the child’s productivity in this environment. Specifically, the IEP will include: 1/ current levels of educational performance 2/ annual goals; 3/ special education and related services to be provided; 4/ participation with nondisabled children; 5/ participation in state and district-wide assessments; 6/ dates and location when services are to begin and where and how often they will be provided; 7/ any transition services needed and finally 8/ a measurement of success evaluation and regular communication plan informing you as the parent. Related services that might be provided are listed in the IDEA. They include but are not limited to: transportation, speech-language pathology, auditory services, psychological services, physical therapy, counseling (including parent counseling and training), alternative learning strategies, etc.

For copies of The Federal regulations concerning Individualized Education Programs (IEPs) contact Candlelighters National office at: 1-800-366-2223 or email info@candlelighters.org or call the National Information Center for Children and Youth with Disabilities at 1-800-695-0285 or visit their website at: www.nichcy.org

Subsequent to the development of an IEP for your child, a once yearly meeting must be scheduled with you to review your child’s progress, with the intent to make any changes as necessary. Requests for review can be made at any time throughout the year. Also, a child who is classified as a special needs child, must be re-evaluated at least every three years. The purpose of this evaluation is to determine if your child continues to be a ‘child with a disability’ as defined under the law as well as reassess your child’s educational needs. It must be noted that the school is not responsible for ensuring that the child reaches the IEP goals. The school is responsible in good faith to provide the services, but the school is not responsible if the goals listed are not achieved.

If there are disagreements or complaints about the handling of the child’s IEP, resolution may be achieved by 1/ mediation; 2/ due process or 3/filing of a complaint with the State Education Agency (SEA).
For copies of The Federal regulations concerning Individualized Education Programs (IEPs) contact Candlelighters National office at: 1-800-366-2223 or email info@candlelighters.org or call the National Information Center for Children and Youth with Disabilities at 1-800-695-0285 or visit their website at:
www.nichcy.org

Additional resources: Candlelighters’ book "Educating the Child with Cancer" 1-800-366-CCCF.