Exploring the Experiences of Families in an Educational Setting:

A Survey Initiative by the Victorian Government

Response Required by 25th March 2024

We hear from many families within our community about the struggles they face navigating the education system for their children with Prader-Willi Syndrome (PWS). A recurring issue is that, despite their children’s cognitive functions being lower than peers and facing challenges like social adaptation, high anxiety, low muscle tone, food-seeking behaviors, and temper outbursts, these symptoms are often not evident or fully understood at the time of school admission.

Consequently, early assessments and misunderstandings of the evidence-based staged developmental needs of children with Prader-Willi Syndrome, conducted by professional early childhood caregivers, Allied Health Professionals, or Medical Specialists, may not accurately reflect the level of support these children require at the time or in the near future. This often leads to children with PWS being unable to access specialist schools, leaving them with no choice but to attend mainstream schools that may not be equipped to meet their specific needs.

Despite the students ability to mask their difficulties to some degree, making them appear more capable than they are, it’s crucial to acknowledge the high level of support students with Prader-Willi Syndrome genuinely need throughout their educational journey.

The Victorian Government is dedicated to improving the educational journey for students with disabilities and high needs. By inviting the PWS community to participate in a thorough review of the enrolment processes and criteria for specialist schools, they aim to ensure that every child receives the education and support they deserve. This is a significant step towards recognising and addressing the unique challenges faced by students with PWS and their families, and we strongly encourage your participation in this pivotal initiative.

Purpose of the Survey

The heart of this initiative is a detailed survey designed to gather insights directly from those who experience the system first-hand: the students and their families. By participating in this survey, parents, carers, and students will provide valuable feedback on their experiences with specialist schools, including the application and enrolment processes, the support received, and the overall educational environment directly to the Victorian Government Inclusive Education Division.

The PWSA Victoria acknowledges that the survey does not fully capture the full range of challenges children within our community encounter in educational settings. Therefore, we encourage you to also share your experiences in mainstream schools directly with us, so that we can then share this with the department.

This feedback is crucial for identifying areas where improvements can be made and will be shared with policymakers, with the hope of driving meaningful change., ensuring that every student with a disability or high needs has the opportunity to thrive in an educational setting that best suits their needs.

Why Your Voice Matters

Families of children with disabilities, including those with Prader-Willi Syndrome (PWS), often navigate a complex landscape of care, support, and education. Children with PWS exhibit a range of physical, cognitive, and behavioral characteristics, which can present unique challenges in an educational setting. For these children, the right educational environment can significantly impact their development, future opportunities, and overall quality of life.

Your participation in this survey will shed light on the effectiveness of current processes and identify where additional resources, support, and policy adjustments are needed. It’s an opportunity to make your voice heard and contribute to meaningful change that will benefit the PWS community and other families navigating intellectual disabilities in the educational system.

Mainstream Victorian Government, Catholic and Independent School Feedback

As noted above, The PWSA Victoria acknowledges that the Victorian Government survey does not fully capture the full range of experiences that families and students within our community encounter in other educational settings beyond specialist schools.

Therefore, we encourage you to also share your experiences (good and bad) in mainstream schools (this includes government, Catholic, and independent schools) directly with us, so that we can then compile this information to share with the Victorian Government Inclusive Education Division and other educational bodies that govern these schools.

Your insights are crucial for fostering improvements in how our education system supports students with Prader-Willi syndrome and similar needs.

Mainstream School Feedback

How to Participate

If you are a parent and/or carer of a child with experience in the specialist school system or a current or former student, please complete either of the Victorian Government Survey’s below.

If you are a parent/carer to a child who is a current or former student of Mainstram school and wish to provide feedbackl, please complete the Mainstream School Feedback form above.

The Victorian Government survey is designed to be accessible and straightforward, allowing you to share your experiences candidly and constructively. Questions will cover a range of topics, from the initial application process to the day-to-day experiences in specialist schools, focusing on both the successes and challenges encountered.

The survey is for parents and carers of a child with a disability with experience in the specialist school system. There is also a survey for current and former specialist school students.

If you wish to provide your feedback to this Survey please select either button below:

There is an easy English version of both the parent/carer survey and the current/former student survey. If you would like a copy of this survey, please send an email to Jordan Landers to ask for this version of the survey. Jordan’s email address is jordan.landers@au.ey.com.


This is a pivotal chance for our community to engage with policymakers and advocate for the necessary changes to support our children, particularly those with Prader-Willi Syndrome. By ensuring these students are comprehensively supported in their education, focusing on essential life skills and future success, we can pave the way for them to become valued members of society. It’s crucial that policies evolve to reflect this goal, and this initiative presents a golden opportunity to drive such change.

By taking part in this survey and sharing or providing your input through this feedback initiative, you’re not just sharing your story; you’re paving the way for a future where every child with a disability receives the education and support they deserve.

Let’s come together as a community to make this vision a reality. Your experiences, insights, and suggestions are the keystones to building an educational system that uplifts every student, regardless of their challenges.

For further details and to take part in the survey, please visit the Victorian Government education website. Together, we can create a positive change for the PWS community and beyond. www.education.vic.gov.au 

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Prader-Willi Syndrome (PWS) is a rare, complex, unique, life-threatening multistage genetic disorder which affects 1 in 15,000 births and results in an abnormality of chromosome 15. PWS can have a significant impact on behaviour, learning, mental and physical health, community inclusion and social relationships. People with PWS exhibit high anxiety, complex and challenging behaviours and cognitive dysfunction throughout their lives. PWS is a spectrum disability, and the degrees of visual abnormality varies immensely. Many people with PWS also have psychiatric problems and autistic characteristics. A defining characteristic of PWS is hyperphagia, or a compulsion to eat.  For more information visit www.pwsavic.org.au

Prader-Willi Syndrome Association of Victoria (PWSA Victoria) is a volunteer lead ACNC registered Australian Charity, with many volunteers having lived experience. Their role is to work closely with organisations around the world, whose vision and purpose align with their own, to ensure their local PWS community is well supported, while researchers around the world work hard to find a cure and viable treatments. The PWSA Victoria’s aim is to continue to break down barriers and create a world where everyone with PWS has access to the right tools, to enable them to live a full and inclusive life. For more information, please visit www.pwsavic.org.au

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Article By Renee Zilm

Renee excels in enhancing business operations by refining processes, ensuring organisations function with greater efficiency, effectiveness, and strategic insight. Beyond her professional expertise, Renee is a mother to four children. Her life took a poignant turn when her second youngest child was diagnosed with Prader-Willi Syndrome shortly after birth. Embracing this challenge with grace, Renee now dedicates her time to caring for her son while also committing herself wholeheartedly to her role as President of the Prader-Willi Syndrome Association of Victoria.

Ever since her son Harvey’s diagnosis, Renee has been a force of change, initiating and steering innovative programs and services designed to empower individuals with Prader-Willi Syndrome. Renee is deeply invested in the tenets of social justice and inclusion, driven by the conviction that individuals with disabilities deserve equitable access to support and resources necessary for a full and inclusive life. Her profound dedication to her work and her family reflects an overarching mission to ensure that every individual with disabilities can thrive in a supportive and inclusive society.