The Importance of Special Education

Daniel Fiduccia

Every child with cancer should be in special education and have an Individualized Education Plan (IEP). this is important to see that the child receives an appropriate and free public education, his intelligence, achievement, and behavioral skills are tested and compared to end of treatment and for late effects, and his rights are protected.

Special education can also provide the child with related services such as transportation, occupational, and physical therapy, and psychotherapy. Services which are necessary for the child to benefit from his education are related services.

Many parents pull children on treatment out of school during treatment, or accept school administrator's oral promises about what will be done in the future for the child. They then try to re-integrate the child back in school years later. this puts the child at an extreme educational and social disadvantage, which can be worsened by the child's treatment effects. If it is not in the IEP, the school has no obligation to provide it. Without an IEP, the child is not eligible for such things as home tutoring or an additional set of books for home or the hospital. Schools may also try to force parents to have testing done which is really educational in nature. If the parent tries to have the testing done through their health insurance, the insurance company will deny payment for the testing because it should be done by the school system.

To have your child assessed for special ed, write a letter to the school principal. read carefully the Notice of Parent's Rights which the school district will send you. Contact your state Protection & Advocacy Unit (contact the National Association of Protection & Advocacy Systems, Washington, D.C., 1-202-408-9518, for information on contacting your state's unit) and obtain their special education materials for parents and advocates. Some of these documents are now available on line.

It pays to follow up phone calls with letters, and keep a log of phone conversations with school staff. If the school is not providing what is on the IEP, you must follow the procedure (usually filing a complaint with the state's Department of Education/Public Instruction) to seek compliance. If the school will not lace what you want on the IEP, then you must usually file for a fair hearing to obtain these items or services (sometimes, mediation is required before the hearing). If you cannot resolve your problem with the school staff, follow the proper resolution procedure.

It is important to know what special education does not provide. For example, you cannot pick your child's teachers. Parents sometimes waste time fighting over items which are inconsequential or not provided by law. Be sure to concentrate on the major issues specific to your unique child.

Private schools have little obligation towards disabled children, and private religious schools have none. We have received many complaints about private schools; parents usually have to place the child in public school to receive services. Charter schools, however, are considered public schools under federal law.

Remember that you child is to be assessed every three years that she or he is in special ed. This provides comparisons and helps determine if late effects are developing. This information should be shared with your child's medical treatment team.

Make sure you apply to have your child determined eligible for special ed. Do not accept excuses such as he doesn't meet it, you can do better without it, or she is functioning just fine. Receiving a poor education can destroy your child's chances to lead an independent and fulfilling life as an adult.

Daniel Fiduccia is a staff member of the Childhood Cancer Ombudsman Program, a project of CBTF.

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