Pediatric Advocacy

How to Be a Strong Advocate for Your Child:

Working with medical and school professionals can be intimidating.  As a parent or guardian, you know your child’s history, challenges, and strengths best – which makes you your child’s strongest advocate. You are a vital part of the medical and school team working towards the best outcomes for your child. Advocating for your child with special health care needs is an ongoing learning process. Learning to communicate effectively and disagree with respect is key to being an effective team member.

Tips to becoming an effective advocate for your child:
  1. Stay current on your child’s diagnosis. You can do this by researching on reputable websites, attending conferences and workshops, and reading newsletters.
  2. Know your child’s rights both in the school and in the health care system. See below for information on Family-to-Family Health information Centers and Parent Training Information Centers to find resources and parent advocates in your state that can assist you with learning your child’s rights.
  3. Build and maintain positive relationships. Take time to get to know the medical and school providers working with your child. Reach out to other parents who have children with similar concerns.
  4. Communicate as calmly and effectively as possible:
    • Come prepared to appointments and meetings with a list of questions/concerns to be addressed. Make sure the focus stays on your child.
    • Learn terms and/or acronyms you hear from professionals, i.e. 504 plan, Care Coordinator, medical home, etc.
    • Learn to disagree calmly and with respect by practicing difficult topics prior to appointments.
    • Try to use “I” instead of “You” statements.
    • It might be helpful to bring a relative or friend with you to help listen and take notes.
    • Ask questions to make sure you fully understand what is being discussed and to keep the lines of communication open.
    • Address comments and questions to the person that is most able to address or answer them.
    • Make sure you follow up with any recommended appointments, refilling prescriptions, scheduling follow up assessments, meetings etc..
  5. Keep a copy of medical and school records. This will help you stay up to date on your child’s condition, will help in an emergency, and will help you remember medications, treatments and programs that have been tried.
  6. Include your child as much as is age appropriate. One day they will be advocating for themselves and will be watching and learning from you!

Public Education Services that some children with mast cell diseases might qualify for:

Individual Health Plan
Students with chronic and complex healthcare needs often require specialized care at school to help ensure their health and safety. An Individual Health Plan (IHP) can be developed for your child’s school and can stand-alone or be part of a 504 or IEP. The Individual Health Plan is usually developed by the school nurse with input and approval of the primary care physician/or specialty care physician to specifically address the child’s medical needs in the school setting.

To develop an IHP for your child, start with your child’s physician. Most physicians have IHP forms for specific health conditions i.e. allergies, asthma. Most forms require the physician’s signature prior to submitting to your child’s school.

More Info
Pacer Center Individual Health Plan Information:

504 Plan

  • A 504 plan is a plan that your child’s school develops to give students with disabilities the supports they need to access education.
  • A 504 plan is for students that can learn from regular classroom instruction but need accommodations to access that instruction.
  • A 504 plan provides services and changes to the environment.
  • 504 plans prevent discrimination and protect the rights of students with disabilities in school. Students with disabilities are covered under Section 504 of the Rehabilitation Act, a federal civil rights law.
  • To receive a 504 plan a child can have any disability and the disability must interfere with the child’s ability to learn in a general education classroom.
  • Section 504 has a broader definition of a disability. It says that a disability must substantially limit one or more basic life activities – this is why a child that does not qualify for an IEP might still be able to get a 504 plan.

Make sure when you request a 504 plan that you are working with the designated 504 coordinator for your school or district. One of the responsibilities schools have under section 504 is that they must designate an employee to ensure compliance.

The Office of Civil Rights oversees 504 plans. The office of civil rights has regional offices and they often have advocates that will work with you.

Sample accommodations a 504 plan might include
  • Preferential seating
  • Reduced classwork or homework
  • Adjusted class, school schedules or grading
  • Excused lateness, absences, or missed work
  • Modified textbooks or audio or video materials
  • Extended time on assignments and tests
  • Adjusted class
  • Verbal testing
  • Technology aids – verbal, visual, writing
  • Behavior management supports
  • Pre-approved nurse’s office visits and student accompaniment to visits
  • Occupational or physical therapy
  • Behavior management support

Link to Sample 504 plan

More Info
Office of Civil Rights – Frequently Asked Questions About Section 504 and the Education of Children with Disabilities:

Individual Education Plan (IEP)
  • An IEP is a legal document that lays out the plan for special education instruction, supports and services that students with disabilities need to make progress and have success at school.
  • An IEP provides individualized special education and related services to meet the needs of the student.
  • The Individuals with Disabilities Education Act (IDEA) is the federal special education law for children with disabilities that require schools to serve the educational needs of eligible students with disabilities.
  • To receive an IEP a student must have one of 13 specific disabilities listed in IDEA, and the disability must affect the child’s educational performance and/or ability to learn and benefit from the general education curriculum, which leads to the need for specialized instruction.
  • Not every child with learning and attention needs will qualify under IDEA.

Conditions covered Under IDEA:

  1. Specific learning disability
  2. Other health impairment (OHI):
    • Some children with a mast cell disease may qualify for an IEP under the disability criteria of Other Health Impairment. Sec. 300.8 (c) (9) of IDEA
    • (9) Other health impairment means having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that—
    • Is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and
    • Adversely affects a child’s educational performance.
  3. Autism spectrum disorder
  4. Emotional disturbance
  5. Speech or language impairment
  6. Visual impairment
  7. Deafness
  8. Hearing impairment
  9. Deaf-blindness
  10. Orthopedic impairment
  11. Intellectual disability
  12. Traumatic brain injury
  13. Multiple disabilities

Start the IEP process by requesting an evaluation in writing. Sample Letter from Parent Center Resource Hub

You have the right to participate in all IEP meetings.

PACER Center’s, Help for Parents: How to Prepare for a Special Education Evaluation Planning Meeting

Your local PTI (listed below) should have advocates that can help you learn more about your state’s requirements.

Resource: PACER Center’s Guide to the IEP
Includes development of IEP, content of IEP, parent action, and team information

IEP goals and objectives are individualized based on present level of performance and the assessed needs of the student. All goals should be SMART goals: Specific, Measurable, Attainable, Realistic/Relevant, and Time bound.

More Info
U.S. Department of Education IDEA website
PTI – PACER Center’s Parent Special Education Information


Family-to-Family Health Information Centers (F2Fs)
Families who have children with special health needs (CSHN) staff F2Fs. F2F staff have experience navigating systems and understand the challenges that families with CSHN face.  The Health Resources and Services Administration (HRSA) fund F2Fs. There is one F2F in each state and in the District of Columbia. The main goal of the F2F is to help families of CSHN access and navigate health care services both in and out of school.

To find an F2F in your state to assist you with your state resources go to this link.

Parent Training and Information Centers (PTIs)
Every state has at least one Parent Training and Information Center (PTI). The Individual with Disabilities Education Act provides money for each state to have at least one PTI. The main goal of PTI’s is to help parents make the most of their child’s education. To find a PTI in your state to assist with your state resources go to this link.

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