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Partnering for a Successful IEP [2021 CONFERENCE VIDEO]

In this video, Dr. Katy Chambers, former high school principal and PWS parent, discusses strategies for partnering with schools to create IEPs.

In this 1 hour and 12‑minute video, Dr. Katy Chambers, former high school principal, teacher, and mom to Daniel who lives with PWS, shares her journey maneuvering the special educational system from both sides of the table. The session includes Q&A from participants in the 2021 FPWR Virtual Conference.

Click below to watch the video. If you're short on time, scroll down for timestamps to find the portions you're most interested in.

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Presentation Summary With Timestamps

1:30 Dr. Katy Chambers presents

Partnering for a Successful IEP [2021 CONFERENCE VIDEO]

3:40 Dr. Chambers’ Personal and Professional Experience with PWS

  • Husband, Tony, also works in the education field. 
  • They have 3 children, including Daniel, who is 9 years old and living with PWS.
  • Reward of being his mom and the impact he’s had on the family has been irreplaceable.
  • She has served in public education as a volunteer, a teacher, an assistant principal, and a principal in a variety of school settings. 
  • Currently has direct impact on hiring and training staff in a small public school district as the executive director for human resources.

5:06 “My Horror Story‑The Story of Anywhere School”

  • The first transition that Daniel had from pre‑K to kindergarten was “nothing less than a nightmare for us.”
  • After a positive kindergarten experience, with an excellent IEP, Daniel was moving into a new school setting.
  • Family felt like they had a really great plan to move forward with his schooling experience. 
  • In reality, two days before kindergarten orientation, they were informed that the setting of the orientation was in the school cafeteria. The initial activity would be the students walking through the cafeteria line, picking up a cookie and milk, and sitting down to get all of the information needed about kindergarten.
  • Told that the open house orientation would have staff at each exit handing out popsicles. 
  • After questioning this plan, the family was to wait outside and hear information from the hallway, and could leave out the back door to avoid the popsicle.
  • From this foundational experience entering into school and the schooling system, they immediately knew they would need to partner closely and participate with the school to ensure Daniel’s success.

7:27 How Are Our Children Included?

  • Graphic describes distinction between inclusion, exclusion, segregation, and integration. Inclusion is the ultimate goal.
  • In “horror story” above, the family was given the opportunity to be fully segregated from the open house. Or exclusion by being asked to leave out the back door. If food had not been offered, that event could have been inclusive.
  • Poll: Think about the last experience you had with your child: Would you label it inclusion, integration, segregation or exclusion?
  • Poll results show a variety of experiences. 41% have experienced full integration.

9:51 Overview of Laws that Guarantee Inclusion of Children with PWS

  • Section 504 of the Rehabilitation Act, a civil rights statute. Protects all individuals with disabilities within any facilities that receive federal money.
  • Individuals with Disabilities Education Act (IDEA): a 4‑part piece of legislation that ensures students with disabilities, from birth through age 21, are provided a Free Appropriate Public Education (FAPE) that is tailored to their individual needs.
  • Special Education Process
    • Evaluation (requested by school or parent)
    • Review of data
    • Individualized Education Plan (IEP) meeting if data determines an educational diagnosis
  • Parental Rights: Before making changes to IEP, parents must receive written notification of the district’s proposed actions and the district must make every effort to include parents in the IEP process and work with parents when scheduling meetings.

11:31 IEP vs. 504

  • Graphic illustrates the difference between an IEP and a Section 504 Plan.
  • IEP provides equitable education access based on an educational disability.
  • 504 plan ensures equitable access to major life functions based on a medical disability. 
  • Having a medical disability such as Prader‑Willi syndrome does not automatically presuppose that our children have an educational disability. 
  • Important to note that IEPs end either when our children meet their goals, which is the ultimate hope and dream, and/or when they complete high school.
  •  504 plans can continue to guarantee those accommodations and morph into post-secondary education or into the workforce. 

12:44 Parents Express Feelings about IEP Meetings

  • In chat and using QR code, parents described feelings they have about IEP meetings.
  • “Anxiety,” “Nervous,” “Scared” tend to repeat. “Overwhelming” is another.

15:15 Preparing for an IEP Meeting

  • Establish your team. Spouse or extended family members, family, friends. Who is it that is going to go with you to the IEP team meeting and be present with you?
  • Predetermine the roles that those individuals are going to have. Who will take the lead? Who will serve as a support person?
  • Reach out and meet the principal of the school. Principals are leaders who set the tone for the climate in the building. Have an informal meeting, bring some information about your child, a picture of your child, maybe a note from your child about their excitement moving into the school. This connection will serve you well. The principal then has a visual and a personal experience, and knows your passion for your child's success. And you can come to some common connection points.
  • Sit down a couple days before or a week before the IEP meeting, pull out some of those things that are currently in place. What is the current IEP? 
  • Do you have early intervention reports, if you're in a preschool and moving into a school setting? 
  • Take a look at those goals and determine if they’re still relevant. Are they appropriate? Do you feel like those goals were met? 
  • What are the safety‑needs specific to PWS that need to be in place?
  • Finally, and probably most importantly, ask yourself: What are your hopes for your child this year? Tony and I always end with what are our hopes for Daniel this year?
  • The IEP plan is written year by year, every year. So the goals that you set are annual goals. 
  • Develop literature for the school. You could do a pamphlet for people working with your child, including a personal cell number, a letter to classmates, and suggestions for celebrations without food. 
  • Think about what resources might be beneficial to provide to the school. If you are just moving from one grade to another, those resources may not be as extensive as if you're moving from one school system to another, or from preschool into an elementary school, elementary into a middle school, or middle to high school.
  • Fortunately, we have an amazing community that shares resources that were obtained through our community networking.

20:55 Collaboration and Participation in the IEP Development

  • You become your child's advocate and you know your child the best. You know their needs. 
  • The school staff, on the other hand, really are the educational experts. They know the best strategies for helping children meet grade level standards and developmental benchmarks. 
  • Chat question: Have you ever walked out of an IEP meeting feeling defeated? Or feeling like your voice was not heard? Was it overwhelming or you couldn’t understand half of what was said?

22:35 Who Should Be at the Table for IEP Meetings?

  • Principal until there is an established partnership with the school
  • Classroom teacher
  • School counselor
  • IEP case manager
  • School nurse
  • All staff involved in providing services
  • Parents (and advocates, if desired)
  • Child with PWS (if appropriate)
  • Para‑professional 1:1 aide (may need to be requested to attend). Don't be afraid to ask for that person’s inclusion. Sometimes they have the most intimate knowledge of the child’s unique circumstances.

24:44 Should Parents Advocate for a 1:1 Aide?

  • Always encourages parents to reflect on why.
  • The benefits are clear for safety. There is a legal guarantee that the child is being monitored and has the undivided attention of an adult for safety.
  • But Dr. Chambers and her husband have found themselves scaling back on this request.
  • As their son progresses through school, having a 1:1 aide presents some challenges.
  • Potential challenges of a 1:1 aide: 
    • Heightened risk of segregation/integration rather than inclusion
    • Having an adult standing by and monitoring can inhibit natural social interaction
    • Reinforces dependency on adults
    • Staffing changes can cause emotional dysregulation
  • Be thoughtful and aware of the potential challenges if you are going into an IEP meeting and requesting a 1:1 aide.
  • If the aide is needed for certain circumstances, what are those circumstances?
  • For Dr. Chambers’ son, Daniel, the family requested support any time food was present and for transition times, for Daniel’s safety.

27:45 IEP Meeting Format

  • Start with anything you want to share, including appreciation for the partnership, keeping in mind that individuals around the table made a commitment to education and to children being successful in school.
  • Also be aware that some people around the table may have never worked with someone with PWS before. 
  • Patience and assuming best intent can add value toward developing a solid plan for the student. 
  • Basic components of the IEP Meeting
    • How the disability impacts involvement in general education curriculum
    • Present level and any evaluation results/medical updates
    • Strengths and concerns
    • Special considerations
    • Goals and data
    • Services summary
    • Accommodations and modifications

29:55 Accommodations and Food Safety

  • Addresses our children's medical diagnosis of Prader‑Willi syndrome.
  • Recall the difference between a 504 plan addressing medical needs and an IEP, which addresses educational diagnosis. 
  • Medical plan is covered because our children have a medical disability with PWS. 
  • Food safety plan is actually maintained not by the IEP team, but by the school nurse, included in the IEP as an accommodation modification across all school settings.
  • Dr. Chambers wrote the plan for the nurse the first year, and this plan became something that each year is updated with the nurse. 
  • Slide of plan. Topics to include:
    • Communication regarding food intake and events
    • Contingency sub plans
    • Food access
    • Food‑free environment
    • Physical safety
    • Toileting
    • Staff training
    • Water access
  • Plan includes topic/action/person responsible/when.
  • Helpful to look at calendar and give a heads up on food safety issues when events are coming up, reminding people to be flexible and try to create traditions that don’t emphasize food.

31:29 The Importance of Documentation

  • It's important to keep just a personal folder for your child throughout the year. 
  • You might need to reference that at a future IEP meeting and it helps the school know that you're tracking information and tracking progress, following up all conversations that you have, or any conversations that you might think are going to lead to an action in the future.
  • Get in the habit of following up with an email that says, “Thanks for meeting with me. I'm glad that we got to talk about X, Y, Z, and I know that you all are going to be implementing A, B, C.” It's a reference point that you can refer back to. 
  • Example of a food log for her son, Daniel. It goes in his lunch box, and guarantees that they know somebody is paying attention to what he's eating at lunch and snack. Declined having him complete the log himself because the purpose is to know an adult is accountable to pay attention to Daniel while he is eating. 
  • Another area of documentation is samples that align to specific goal areas. For example, if the IEP has a writing goal, grab samples and throw them in a folder for comparison when it comes time for a meeting. 
  • Don’t depend solely on the school to have that kind of documentation when it comes to whether they want to change that goal, remove that goal, or add to it.

39: 25 Closing Thoughts

  • It's nice to know that we're not alone in this. 
  • Affirmation for PWS parents doing the awesome job that you're doing, raising a child with special needs and specifically with Prader‑Willi syndrome.
  • Your kids will continue to be amazing. 
  • You’ve surrounded yourself with the support network.

40:49 Q&A

  • If the school has a director of special education, is it reasonable for that person to attend the IEP meeting instead of the principal? Answer depends on the state. Some states require someone from administration.
  • What if the parents’ assessment of the student’s functioning is higher than the assessment team’s recommendation? Answer is to help the team make the best decision to create the least restrictive environment.
  • Is there a diplomatic way parents can request training for staff specific to PWS? Answer: Yes, that can be part of the IEP.

Learn more about this topic at the FPWR Virtual Conference.

FPWR Enewsletter

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.