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.
Whilst the PWSA Victoria aknowledges and appreciates the Victorian Governments commitment to improving the educational journey for students with disabilities. it is evident that the survey put forth to gather feedback from families and students does not capture feedback from the population within our community that attend mainstream schools in Victoria.
To ensure that our advocacy efforts support this cohort within our community the PWSA Victoria are committed to collecting as much feedback from the community as possible with regards to their edUcational journey outside of a specialist setting so that we can present this to the Education Department and hopefully create the necessary change needed for students living with PWS.
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