Advocating for Your Child: Educational Law and Your Rights

What is a 504?
What is an IEP?
Which one do I need for my child?
How does mastocytosis fit in?
Educational advocates
International educational rights?
Online resources
Feature article: The Federal Laws That End the Nightmares of School Meetings, by Judith Greenberg


What is a 504?

Section 504 is part of the Rehabilitation Act of 1973, which is a civil rights act that protects the rights of individuals with disabilities. This law states that no person with a disability can be excluded from, or denied benefits of, any program that receives federal financial assistance. This includes all public schools (preschool, elementary, secondary).

When this Act passed in 1973, Congress required that school districts make their programs and activities accessible and usable by all individuals with disabilities. Section 504 protects all handicapped students, defined as those having any physical or mental impairment* that substantially limits one or more major life activities, including learning.

* (104.3 J Definitions of Section 504) (2) As used in paragraph (j)(l) of this section, the phrase: (i) "Physical or mental impairment" means (A) any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genitourinary; hemic and lymphatic; skin; and endocrine; or (B) any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities.

Click here for more information on Section 504.


What is an IEP?

In 1975, 2 years after the passage of the Rehabilitation Act, Congress passed the IDEA (Individuals with Disabilities Education Act) to further define educational requirements for programs that receive federal financial assistance. Part of the IDEA is the IEP (Individual Education Program), a written document that details the a educational goals for an individual who, because of their disability, needs special education (specifically designed instruction).

An IEP is created during a meeting between parents and school personnel where an educational plan is developed for the disabled child. It is important for parents to understand that they are representing their child in this meeting, and they should be completely comfortable with whatever plans are proposed by school personnel. If there are questions, this is the time to raise them, suggest alternative ideas, etc. At the end of this meeting, a written document will be produced for all parties to sign, stating the objectives of the IEP, and allowing for periodic review of the child's progress.

Click here for more information on IEP.


Which one do I need for my child?

You should pursue a 504 for your child IF he or she has a physical disability or medical condition that impacts their ability to receive the same benefits that a non-disabled child receives. An example for a child with mastocytosis would be the following: Johnny is unable to receive the same level of educational benefits as Jane, because Johnny has mastocytosis and cannot tolerate a high temperature in his classroom. Johnny's school is not air-conditioned and Johnny becomes sick due to mast cell degranulation triggered by heat. Johnny has the right to receive the same education as Jane, and pursuing a 504 would be the direction you need to take to ensure Johnny's educational rights are met.

You should pursue an IEP under the IDEA if your child's disability or medical condition affects his or her ability to learn. A child with mastocytosis may suffer from an inability to concentrate during a mastocytosis episode where levels of chemicals are continually released into his/her body. Some children with mastocytosis have difficulty with proper enunciation or speech. Doctors and speech pathologists observe that continued upper respiratory infections may result in an inability to breathe properly, and children are forced to breathe through their mouths, resulting in improper tongue placement for proper speech.

It is quite possible your child with mastocytosis will have needs that fall into both of these categories. If this is the case you should pursue the IEP/IDEA since it addresses both physical disabilities (such as providing air conditioning) and educational benefits (such as providing speech lessons). If your child does not need additional educational benefits as described above, but rather only access to the same educational programs of non-disabled individuals, then you should pursue the 504.


How does mastocytosis fit in?

Mastocytosis is a rare disease that affects each individual patient differently. This disease has life threatening implications for its patients (for example, difficulty breathing, anaphylaxis). It can also cause problems with learning (inability to concentrate, prolonged illness that leads to child absenteeism, problems with proper development of speech).

Children can also experience symptoms from mast cell degranulation due to physical activity, exposure to heat or cold, friction on the skin and exposure to trigger items including some foods and medications, and more.... Click here to see a more extensive list of triggers. Mast cell degranulation can cause itching, hiving, flushing, headaches, gastrointestinal cramping, vomiting, diarrhea and blistering of the skin.

There are several reasons for which a child with mastocytosis can qualify for either an IEP or a 504. Some children may actually qualify for both the IEP (meeting their educational needs) and the 504 (meeting their physical access needs). If this is the case, the parents should pursue the IEP/IDEA, since it is structured to cover both areas.


Educational advocates

An educational advocate works with the child and parents in order to ensure the school system district is providing the necessary services for the child to make significant progress in his or her education.

While Mastokids.Org cannot endorse any individual or organization, we will provide as many contacts as we can for educational advocates to help you ensure your child's rights are being met. Please check back with us soon, as we are researching educational advocates, and hope to have a list compiled here soon. If you have experience with an educational advocate and would like to share that information with us, please e-mail listmom@mastokids.org with the person's name (organization or individual) and contact information.


International educational rights?

Any families with information on educational rights for disabled children in other countries please contact internationalsupport@mastokids.org. Mastokids.Org would like to make available as much information as possible to ensure that children with mastocytosis are receiving the same level of education as non-disabled children.


Online resources

The following are links to online resources for both Section 504 and IEP information. Mastokids.Org cannot guarantee any information obtained from another site. These links are being listed as tools to help you learn more about the process and become a better advocate for your child.

http://www.wrightslaw.com/info/sec504.index.htm
Wrights law complete review of 504 and ADA, including a comparison of both Section 504 and IEP.

http://www.wonderfulmiracles.com/autism/saveit.htm
A mother's personal experience with IEP and her autistic son.

http://www.504idea.org/
Council of Educators for Students with Disabilities, Inc. Excellent resource for understanding requirements public schools must meet for Section 504 and IDEA.
 
http://www.ourspecialkids.org/iep504.html
Information from parents.
http://www.ed.gov/about/offices/list/ocr/index.html
Office of Civil Rights (organization that supervises ADA (section 504) and IDEA (IEP).

Disclaimer: Not all Mastocytosis children experience every symptom or disability we have listed above. Symptoms and disabilities we have listed are ones that have been experienced by families with mastocytosis children and their personal caregivers. Please speak to your personal health care provider when beginning the process of educational advocacy. Your child's physician can help you determine which medical or educational needs relate specifically to your child.