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IEPs and PWS — Advocating for Your Child [2019 CONFERENCE VIDEO]

In this presentation, PWS mom and middle school principal Katy Chambers provides parents with 3 Keys to Advocacy in Schools that help with the IEP process.

In this 51-minute presentation, Dr. Katy Chambers helped participants understand the IEP (Individualized Education Plan) process and succeed in the IEP journey. Katy Chambers is a school principal of nine years and mom to Daniel (age 7), who lives with PWS. She shares her journey maneuvering the educational system from both sides of the IEP table, providing strategies that have been helpful as a parent, tips that help school staff better understand our children’s needs, and action plans that help ease the day to day stresses of monitoring the safety of our kids in the school setting. She leads an interactive session, building on the collective knowledge and experiences of parents in the room. Read the presentation summary below for the key points in her presentation.

Presentation Summary

Prepare, Participate, and Remain Present: 3 Keys to Advocacy in Schools

Who is Katy Chambers?

Mom first…

  • 4 kids- 15, 7, 5, 2
  • Daniel (7-PWS) was my first born
  • Each milestone has been a celebration, each challenge has been exhausting

Then an educator…

  • 16 years in public education
  • 6 Middle Schools (grades 6-8)
  • 10th year as a principal

My horror story

  • A wonderful IEP meeting experience can produce a great plan….But beware….
  • A lack of understanding of the safety needs can result in exclusion of our children. 

How are our children protected?

  • A definition: inclusion v. Exclusion, Segregation and Integration

The Law

  • Individuals with Disabilities Education Act
    • Individuals with Disabilities Education Act (IDEA) is a four-part piece of American legislation that ensures students with a disability are provided with Free Appropriate Public Education (FAPE) that is tailored to their individual needs.
  • Section 504 of the Rehabilitation Act
    • Section 504 is a part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled are met.
  • Special Education Process
    • Evaluation (requested by school or parent)
    • Review of Data
    • Individualized Educational Plan meeting
  • Parental Rights-
    • Before making any changes to the IEP, parents must receive written notification of the districts proposed actions.
    • The district must make every effort to include the parent(s) in the IEP process and work with parent requests when scheduling meetings.

IEP v 504

Prepare for your IEP

Real conversations with support network

  • Review current IEP/Early Intervention Reports
  • Determine if goals are appropriate/still relevant/met
  • What are our hopes for Daniel’s progress this year?
  • Identify required safety needs- food free, communication of event with food, bus safety, etc. 

Develop literature for the school

  • Pamphlet for those working with Daniel- include personal cell #
  • Letter to the classmates 
  • Suggestions for celebrations without food

Recruit your Support team

  • Define meeting roles- writing, listening, speaking 
  • Reach out to the principal for an informal pre-meeting before the school year

Participate in the IEP Development

Who should be at table?

  • Principal (until there is an established partnership with the school)
  • Classroom teacher
  • School counselor
  • IEP case manager
  • School nurse
  • All teachers involved in providing services
  • Para-professionals
  • (may need to be requested to attend)
  • Parents (& advocates if desired)
  • Child with PWS (if appropriate) 

IEP Meeting Format

*Start with anything you want to share and appreciation for the partnership

  1. How the disability impacts involvement in general education curriculum
  2. Present Level and any evaluation results/medical updates
  3. Strengths and concerns
  4. Special considerations
  5. Goals and Data
  6. Services Summary
  7. Accommodations and Modifications

Ask Questions

  • In present level- Does it mention the need for support when food is present in all school settings to ensure Daniel has no access to food?
  • In special considerations- Does Daniel need transportation to ensure a food-free environment? 
  • While considering the goals- What are the learning expectations of a typically developing child in the current grade- do the goals assist in progressing Daniel toward that level?
  • In the Services Summary- Are “adult support” minutes large enough to cover times of transition, meals/snacks and playground? Is it noted that transportation is a strict food-free environment?
  • In the Accommodations/Modifications- Is there reference to the environment being ‘food free’ across all settings as outlined in the care plan? Is the care plan written and included with the IEP?  

Care Plan - Topics to include:

  • Communication regarding food intake & events
  • Contingency Sub Plans
  • Food Access
  • Food-Free Environment
  • Physical Safety
  • Toileting
  • Staff Training
  • Water Access

Remain Present in the Partnership with the School


  • Teacher survival kit, Thanksgiving, Teacher appreciation, End of the year, Life events, thank you notes, etc.
  • Volunteer - PTA, class parties, etc. 


  • Monitor upcoming events and communicate when you notice special activities to ensure there is not food going to be present: don’t assume someone else is taking care of it.
  • Pre-determine which events you can be flexible about and which you can’t – make a plan.


  • Daily Food Log- Maintains accountability that someone is watching
  • Pro-active Documentation- Doctors notes, Calls when absent

File Progress Evidence- Keep work samples throughout the year to provide support for growth (or lack of) for following IEP

donate to FPWR for PWS research

Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.