Preparing for School
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Confidentiality and Disclosure |
Confidentiality and Disclosure
Most children with hemophilia are not "disabled" in the traditional sense of the word, and they should not be seen that way. However, all people with hemophilia are provided special protection by the Rehabilitation Act and Individuals with Disabilities Education Act (IDEA). Some children might have learning disabilities unrelated to their bleeding disorder, which are also covered by these laws.
Federal law protects the rights of children with disabilities. If, for whatever reason, your school seems resistant to making certain accommodations that you feel are necessary for your child to participate fully in school, make them aware that the Rehabilitation Act and the Individual with Disabilities Education Act require that public schools make reasonable efforts to enable your child to participate in educational and physical activities. This may include such accommodations as handicap access ramps, scheduling a tutor or make-up work, arranging classes within shorter walking distances, or making reasonable adjustments to gym class requirements.
Make sure your school is aware of these laws if you feel your child is being discriminated against. Your HTC can also be a great source of additional information and advocacy on your behalf should you encounter any problems. If your child has special needs that require further attention, request a “504 plan” (Rehabilitation Act of 1973, Section 504) from the school and/or an Individualized Education Program (IEP).
Rehabilitation Act
The Rehabilitation Act prohibits discrimination on the basis of disability in programs conducted by federal agencies, in programs receiving federal financial assistance, in federal employment, and in the employment practices of federal contractors. The standards for determining employment discrimination under the Rehabilitation Act are the same as those used in Title I of the Americans with Disabilities Act.
Section 504 of the Rehabilitation Act of 1973 states that "no qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under" any program or activity that either receives federal financial assistance or is conducted by any executive agency or the United States Postal Service.
Each federal agency, such as the Department of Education, has its own set of section 504 regulations that apply to its own programs. Agencies that provide federal financial assistance also have section 504 regulations covering entities that receive federal aid. Requirements common to these regulations include reasonable accommodation for employees with disabilities; program accessibility; effective communication with people who have hearing or vision disabilities; and accessible new construction and alterations. Each agency is responsible for enforcing its own regulations. Section 504 may also be enforced through private lawsuits. It is not necessary to file a complaint with a federal agency or to receive a "right-to-sue" letter before going to court.
For information on how to file 504 complaints with the appropriate agency, contact:
U.S. Department of Justice
Civil Rights Division
950 Pennsylvania Avenue, NW
Disability Rights Section - NYAV
Washington, D.C. 20530
Toll-free: 800.514.0301 (voice)
Toll-free: 800.514.0383 (TTY)
www.usdoj.gov/crt/ada/adahom1.htm
Individuals with Disabilities Education Act (IDEA)
Thanks to a powerful and important federal law called the Individuals with Disabilities Education Act, or IDEA, children with disabilities are entitled to a “free appropriate public education” (often called FAPE). This means that schools must provide eligible children who have a disability with specially designed instruction to meet their unique needs at no cost to the child’s parents. This specially designed instruction is known as special education. The IDEA includes lots of information to help states design special education programs for children with disabilities. The IDEA also includes regulations to protect the rights of parents and children.
Becoming familiar with IDEA will be very useful to you, because it is the basis of your child’s educational rights. It is also helpful for you to know the policies of your state and local school district. States must meet the minimum federal requirements of IDEA, but they can also give students and parents more rights and services. Call or write your state department of education (or your local school district) and ask for a copy of your state (or local) special education regulations. There may also be a special education handbook or parent guide available from your state or local district.
One of the most important parts of the special education process is creating a plan for your child’s education. This plan is called the Individualized Education Program, or the IEP. The IEP is the foundation for your child’s education, and you are a very important member of the team that develops it. Your child’s IEP lists the specific special education services your child will receive, based upon his or her individual needs. This is why it is so important that you understand and help develop your child’s IEP.
Reprinted from the National Dissemination Center for Children with Disabilities (NICHCY) website, www.nichcy.org.
If parents disagree with the proposed IEP, they can request a due process hearing and a review from the state educational agency if applicable in that state. They also can appeal the state agency’s decision to state or federal court. For more information, contact:
Office of Special Education Programs
Office of Special Education & Rehabilitative Services
U.S. Department of Education
330 C Street, S.W., Room 3086
Washington, D.C. 20202
Tel: 202.205.5507 (voice/TTY)
www.ed.gov/offices/OSERS/OSEP