Daniel Fiduccia
Most children with cancer should be in special education programs if services are needed. An Individualized Education Plan (IEP) must be developed with your child’s school team. It is important to ensure the child receives an appropriate and free public education, undergo intelligence, achievement and behavioral testing. These tests are used as a baseline and are then compared to end of treatment testing to assess late effects. The goal is to protect the rights of these children.
Special education can also provide the child with related services such as:
- transportation
- occupational therapy
- physical therapy
- speech therapies
- psychotherapy
Needs are assessed to determine which services are important for the child to be able to benefit fully from his/her education.
Many children while on treatment miss school. Parents may accept school administrator’s oral promises about what will be done in the future for the child. If information is not included the IEP, the school has no obligation to provide said services. It is important for the IEP to be appropriately detailed, fulfilled, and re-visited for changes as the child’s needs may change. Without an IEP, the child is not eligible for home tutoring or an additional set of books for use at home or in the hospital. When a child is re-integrated back into school years later, if time has lapsed, the child may face some educational and social disadvantage, which can be worsened by the child’s treatment effects. School administrators or staff may insist parents have testing done that is educational in nature. If the parent tries to have the testing done through their health insurance, the insurance company will often deny payment for the testing if testing be done by the school system. Parents should ask the questions ahead of arranging for testing.
To have your child assessed for special education, write a letter to the school principal. Read carefully the Notice of Parent’s Rights which the school district will send you. For more information contact your state Protection & Advocacy Unit (the National Association of Protection & Advocacy Systems, Washington, D.C., 202.408.9518, to inquire about your state’s unit) and obtain their special education materials for parents and advocates. Some of these documents are now available online.
Follow-up phone calls and/or letters are important. Keep a log of phone conversations/communications that you have with school staff. If the school is not providing what is detailed 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 place the necessary items on the IEP, then you must 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 understand what special education does and does not provide. For example, you cannot pick your child’s teachers. Parents sometimes argue for services or items which are inconsequential or not provided by law. Be sure to concentrate on the major issues specific to your unique child to ensure your child receives the accommodations that are best for their education.
Private schools have little obligation towards disabled children. Private religious schools generally do not have specialized programs. The CBTF Ombudsmen Program receives many complaints about private schools. Parents usually have to place the child in public school to receive important services. Charter schools, however, are considered public schools under federal law.
Remember that your child is to be assessed every three years while she or he is receiving special education. This provides a comparison to previous testing and helps determine if late effects are developing further. This information should be shared with your child’s medical treatment team.
Make sure you apply to have your child declared eligible for special education. Do not accept excuses such as he doesn’t meet the requirements if there are concerns, or that your child can do better without it, or your child is functioning just fine. It is important to determine your child’s needs and be prepared to address them. Documentation from the specialists who treat your child can be helpful in explaining late effects and/or other disabilities due to treatment or tumor. Receiving a poor education can hinder your child’s chances to lead an independent and fulfilling life as an adult. It important to determine your child’s needs and to address them.
Daniel Fiduccia was a staff member of the Childhood Cancer Ombudsman Program, a project of the Childhood Brain Tumor Foundation, Germantown. Dan was federally trained disability rights advocates specializing in medical, education, insurance, and disability issues. Dan, a 40 year survivor, lost his battle to Wilm’s tumor years ago. Wilm’s is a pediatric cancer. Dan fought his battles and lived many years into adulthood. Dan felt very strongly about advocating for others, especially regarding education for disabled children.
Contact Us for more information about the Ombudsmen program. Please include contact information, child’s name, date of diagnosis, tumor type, and some detail of the concern and will be passed along to the appropriate contact. Reviewed and Revised 2017
In addition, we can also recommend some parent mentors.
Resources:
Americans with Disabilities Act: (Includes information about ADA and Section 504)
Disability Rights Maryland | DRM-Education
Recommended Books:
A Guide to Collaboration for IEP Teams, by Nicholas Martin, M.A.
A Parent’s Guide to Special Education, by Linda Wilmhurst, Alan W. Brue
Negotiating the Special Education Maze, by Winifred Anderson, Stephen Chitwood, Deidre Hayden, and Cherie Takemoto
The Complete IEP Guide: How to Advocate for Your Special Education Child, by Lawrence M. Siegel
Wrightslaw: From Emotions to Advocacy, by Peter W.D. Wright, Pamela Darr Wright