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While the majority of schools work closely with families to provide an excellent education for children with cancer, some schools, particularly those that are large or underfunded, may not have the resources to meet your child’s changing educational needs. This section is for you—with the goal of helping you know how to work with your school under such circumstances and what it is appropriate to ask for.
In other sections of this site, we have described the recommended response of a school when a child has cancer and is in treatment: assessment of the child’s needs, flexibility in scheduling, preparation for handling medical issues and good, regular communication with you and your children — both sick and healthy.
We have stressed that it is appropriate to both ask for and expect extra help for your child from the school. We have also stressed that, while there might be one or two teachers or other school employees who go out of their way to help your son or daughter, without help from the school administration, it is hard to coordinate all the services your child might need over the course of treatment and beyond.
You might feel frustrated if phone calls or emails are not returned, meetings are not scheduled and IEP testing is not performed in a timely manner. This can be stressful for parents who are already stretched monitoring their ill child’s treatment and attending to the needs of siblings, jobs and significant others. If this is happening to you, there are things that you can do to make sure that your child is educated in an appropriate manner.
After having tried all of the above options without getting a response, we recommend that you locate an educational advocate. The advocate is a person who is aware of the rights of your child and the responsibilities of the school. The advocate will help you, and the school, design an educational program that meets your child’s specific needs. Publically available advocates can be found throughout the country through the organization called Parent Center Network. If you do not qualify for a free public advocate, you can also hire a private advocate. The parent center network has information about both public and private advocates in your area. The network is accessible at: http://www.parentcenternetwork.org/national/aboutus.html or you can call them at their national toll free number, 888.248.0822.
An advocate will follow-up with the appropriate school administrator on a regular basis to monitor your child’s progress. It is important that the school knows that your family cares about your child’s education and that you also will be following up regularly — “the squeaky wheel gets the grease.”
Another agency that has information about your child’s educational rights is the Disability Rights Education and Defense Fund (DREDF) http://www.dredf.org/about/index.shtml. Founded in 1978, the DREDF has been a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities. They have carried out legislative work that will help to protect your child’s civil and human rights through legal advocacy, training, education and public policy development.
There are three laws that will help to ensure that your child gets equal treatment in his or her school.
Section 504 of the 1973 Rehabilitation Act was the first disability civil rights law to be enacted in the United States. It prohibits discrimination against people with disabilities in programs that receive federal financial assistance, and sets the stage for enactment of the Americans with Disabilities Act (ADA). Section 504 works together with the ADA and Individuals with Disabilities Education Act (IDEA) to protect children and adults with disabilities from exclusion and unequal treatment in schools, jobs and the community.
The landmark 1990 Americans with Disabilities Act (ADA) prohibits discrimination on the basis of disability by employers, public accommodations, state and local governments, public and private transportation, and in telecommunications. DREDF advocates for clients with ADA discrimination claims and represents them in court. They also provide training and education about the ADA, and work to strengthen the law through policy monitoring, development and advocacy.
The Individuals with Disabilities Education Act (IDEA) is the most important piece of civil rights legislation for children with disabilities ever passed in this country.IDEA guarantees children with disabilities a free, appropriate public education in the least restrictive environment. IDEA is the primary federal law that governs Individualized Educational Programs (IEPs) and the special education process. IDEA was reauthorized in 2004 and its implementing regulations were released in August 2006.