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Federal Legislation

As a parent, you are in the best position to advocate for your child. To do that, you must be aware of what you can do to ensure that your child receives the services and accommodations she or he needs. Below are some resources on rights and laws designed to give your child the best education possible. Remember, your Hemophilia Treatment Center (HTC) or local bleeding disorders organization is there to help you along the way.

  • Stay informed. Understand your child's diagnosis and how it impacts her or his education.
  • Know your rights. Your child’s right to a proper education is protected under two important federal laws, the Individuals with Disabilities Education Act (IDEA), which requires schools to develop an Individualized Education Program (IEP), and Section 504 of the Rehabilitation Act of 1973. These laws are described in detail below.
  • Understand your child's IEP. Your school is required by law to help you develop this plan. If you have questions, don't be afraid to ask. If you still have questions, continue to ask until you completely understand the process, the IEP, and how this will help your child's education. Do not sign an IEP unless you understand and agree with its contents.
  • Play an active role in preparing your child's IEP or Section 504 plan. Make suggestions. Speak up if you feel a goal, objective, or accommodation is not appropriate.
  • Get it in writing. When possible, obtain written documentation from teachers, administrators, or other professionals working with your child describing any behavioral or academic concerns they may have.
  • Keep careful records. This should include any written documentation you have obtained, communication between home and school, progress reports, and evaluations. You should also keep a copy of any letter you send to the school. Keep these records well organized and in one place—they may be very useful in the future.
  • Keep open communication with your child’s teachers. Schedule meetings to ensure you and school personnel are on the same page with your child’s progress and IEP or 504 plan. Ask them how to best keep open communication, whether by e-mail, in-person meetings, or a communication notebook.
  • Encourage your child every day. Help your child create a system for completing homework assignments and other school projects.

Educational Rights

Your child’s right to a proper education is protected under two important federal laws, the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973. These laws are described in detail in the Table below.

The Individuals with Disabilities Education Act (IDEA) (Public Law 101-476)
Purpose A federal law designed to protect the rights of students with disabilities by ensuring that everyone receives a free appropriate public education, regardless of ability
  • To request that their child be evaluated for eligibility, parents may contact (in writing or by telephone) their child’s teacher, school principal, or the Director of Special Education in the school district
  • If the school agrees that an evaluation is needed, it must evaluate the child at no cost to parents (usually within 60 days)
  • The school system may also request an evaluation of a child. In this case, parents must first give their informed written permission before an evaluation may be conducted
  • If the child is determined to need special education and related services, an Individual Education Plan (IEP) will be implemented based on the specific needs of the child as decided by the team, including the parents
  • These services may include special classes in subjects in which the child has fallen behind and increased time for tests or completion of assignments
  • Once covered under an IEP, students with disabilities are reevaluated at least every three years and their IEP is reviewed whenever a change in placement occurs, usually annually
Section 504 of the Rehabilitation Act of 1973 (Public Law 93-112)
Purpose A civil rights statute that specifies that anyone with a physical or mental impairment that substantially limits at least one major life activity is eligible for reasonable accommodations
  • Determining whether a child is qualified as a disabled student under Section 504 begins with the evaluation process
  • Anyone can refer a child for evaluation under Section 504. However, while anyone can make a referral, such as a parent or a doctor, the school district must also have reason to believe that the child is in need of services under Section 504 due to a disability
  • The same steps as those listed above for requesting an evaluation under IDEA are used to request an evaluation under Section 504 of the Rehabilitation Act of 1973
  • A written 504 Accommodation Plan is a legal document that lists specific accommodations (eg, modified physical activities, a place to store clotting factor and syringes) needed by your child
  • Periodic reevaluation is required: at three year intervals (unless the parent and public agency agree that reevaluation is unnecessary) or
  • More frequently if conditions warrant, or
  • If the child's parent or teacher requests a reevaluation but
  • Not more than once a year (unless the parent and public agency agree otherwise)