An effective IEP should help school staff understand your child: how they learn, what helps them succeed, and the support they need throughout the day.
For students with Prader-Willi syndrome, that means considering academics alongside communication, behavior, food security, and health needs.
At the 2026 FPWR conference, Dr. Destiny Pacha shared a roadmap for developing an individualized education plan. Drawing on research and her work with families and educators, she shared practical ways to build an IEP around a student’s strengths and needs.
Watch her presentation below, or read on for key takeaways.
Download the full video transcript
Understand the learning profile behind the diagnosis
Students with PWS can have an uneven pattern of abilities, with strengths in some areas and significant support needs in others. Dr. Pacha emphasized that this profile varies from student to student and can change over time.
She discussed processing speed, working memory, and executive functioning as important considerations when evaluating learning. These differences can affect how a student responds during testing and how easily they demonstrate what they know.
An assessment that places demands on processing speed or working memory, for example, may not fully reflect a student’s knowledge. Dr. Pacha cautioned against allowing a single score, particularly early in childhood, to set long-term expectations or determine an educational path.
Understanding PWS can help teams interpret assessment results more thoughtfully while recognizing the individual student’s abilities and potential for growth.
Look beyond the eligibility category
Dr. Pacha referenced research she previously presented examining the educational eligibility categories used for students with PWS. She described “other health impairment” as the most common category in that study.
This highlights a distinction families may encounter: a medical diagnosis and educational eligibility are different. A PWS diagnosis provides important information, while the school evaluation process determines eligibility for special education and identifies educational needs.
PWS is not a separate eligibility category under the Individuals with Disabilities Education Act (IDEA). Students may qualify under different categories depending on their evaluations and applicable state criteria.
Her larger point was that an eligibility label does not describe everything a student needs. Teams still need to understand how PWS affects that particular child’s learning, communication, health, and participation.
Start with a clear picture of your child
The IEP’s description of a student’s present levels of academic achievement and functional performance provides the foundation for the rest of the plan.
Dr. Pacha encouraged families to look for more than a brief list of challenges. This section should describe:
- The student’s strengths, interests, and motivation.
- Current academic, communication, social, and functional skills.
- Progress toward previous goals.
- Areas where support is needed.
- Strategies that are already helping.
- Family observations and concerns.
You should be able to read this section and recognize your child.
The details should also connect to what follows. If a student succeeds in math with individual support, the team should discuss how that support will be provided. If a student needs help understanding directions, expressing their needs, or joining classroom discussions, the IEP should describe the support they’ll receive.
This section is also a place to explain how PWS affects the student and document approaches that have worked well.
Make food security and health support concrete
A school may know that a student with PWS needs support around food without understanding what that means in practice.
Dr. Pacha encouraged teams to put the details in writing. A food security or meal plan can address questions such as:
- Where will the student’s food come from?
- Who determines portions and provides meals or snacks?
- How will access to other food be managed?
- Who provides direct supervision during meals?
- How will staff respond to a food-related concern?
She emphasized direct adult supervision during meals, both for food access and choking concerns.
Health planning should also consider the individual student’s needs beyond hyperphagia. She discussed temperature regulation, reminders to drink water, and differences in pain response as examples of information school staff may need.
These supports may appear in a health plan, a meal plan, or another supporting document. Her practical recommendation was to make sure the IEP clearly identifies the relevant plans so staff know what additional support is in place.
Use behavior support to guide adult responses
Dr. Pacha encouraged families to think of a behavior intervention plan as instructions for how adults will support the student.
A useful plan describes proactive strategies, skills to teach, early signs of difficulty, and consistent responses. Putting their head down, for example, might signal that a student needs help before a situation escalates.
She also emphasized that behaviors affecting learning can include difficulty staying focused, starting work, or remaining engaged. Support does not have to wait for a crisis.
The goal is to help staff understand the student’s patterns and respond with approaches that support learning and emotional regulation.
Connect goals with meaningful progress
Effective goals grow out of the student’s current needs. They may address academics, communication, social skills, emotional regulation, or independent functioning.
Dr. Pacha emphasized that families should understand what each goal means, how progress will be measured, and when they will receive updates.
Rather than focusing on a particular number of goals, she recommended identifying the skills that will help the student take the next meaningful step. The team needs time to teach those skills as well as monitor them.
When a report shows limited or no progress, it is a reason to ask questions. Does the instructional approach need to change? Are the services sufficient? Does the student need different support in the classroom?
The plan can be revisited as the team learns more about what is working.
Understand the different kinds of support
Dr. Pacha offered a straightforward distinction between accommodations and modifications:
Accommodations change how a student learns or demonstrates learning. Examples may include extended time, a different response format, or a smaller setting.
Modifications change what the student is expected to learn. These may involve changes to curriculum, standards, or assessment expectations.
She also reminded families that assistive technology includes more than tablets and communication devices. Depending on the student’s needs, tools such as pencil grips, slant boards, visual schedules, and checklists may be worth discussing.
The question is what helps the student access instruction and participate.
Help school staff understand PWS
An effective plan depends on the people implementing it.
Dr. Pacha highlighted the IEP section addressing supports for school personnel as a place to discuss training about PWS and the individual student.
Training may cover food security, communication, health needs, emotional regulation, and effective teaching strategies. It should also help staff understand what works for the child they are supporting.
She suggested discussing training at the beginning of the school year, when new staff join, and during transitions to a new school.
A new team needs to understand both the condition and the student: their strengths, signs that they are struggling, and the responses that help.
Let the student’s needs guide placement
Services and placement are connected, but they are different decisions. An eligibility category should not automatically determine a classroom.
Dr. Pacha described a continuum of support, including services delivered in a general education classroom, targeted instruction outside the classroom, and other settings when appropriate.
The discussion should focus on the individual student’s needs and the support required for learning and participation. Those needs can change, and the team may need to adjust services or settings over time.
Prepare for the meeting and keep the conversation going
Dr. Pacha recommended requesting a draft IEP, if one is available, along with evaluations and progress information before the meeting. Time to read can make it easier to arrive with specific questions.
She also encouraged families to provide written input in advance. Describe what is working, what is not, and what you want the team to address. Bring examples, such as work samples, observations from home, or a record of recurring school difficulties.
Specific concerns help the team prepare. A question about handwriting, for example, can prompt a discussion about including the occupational therapist.
Her closing message was that IEP planning is an ongoing process. Review progress reports, look at the work coming home, and stay in communication with the team. When needs change or support is not working, bring that information back to the discussion.
Share this resource with your child’s school team to start a conversation about how understanding PWS can inform their learning, safety, and support.
Connect with Dr. Pacha and her team at EmpowerED Solutions, and explore more guidance on partnering for a successful IEP.
