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  • Exploring the Experiences of Families in an Educational Setting

    An Advocacy Initiative by the PWSA Victoria

  • 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.

    For any details related to our Privacy Policy, please visit our website www.pwsavic.org.au 

  • Your Contact Information

  • You can provide your contact information below so that we can reach out for further comment if you wish to do so, or alternatively you can choose to remain anonymous by not completing this section.

  • Format: (000) 000-0000.
  • Do you live in Metro or Regional Victoria?

  • Educational Setting

  • Does your child attend/Has your child attended any of the following?

  • About the Child/Student

  • What are your child's challenges, and what areas do you feel require support at school?
  • Was your child assessed as being eligible for a specialist school?

  • School Enrollment and Information available for Eligibility

  • How much choice did you have when finding a school that was suitable for your child?
  • Do you feel there was enough information readily available to you to help you understand the right schooling options for your child and what was available to you?
  • How difficult was the process of working out if your child was eligible for specialist or Mainstream school?
  • Did you apply for your child to be accepted in a specialist school?
  • How did you select the school that your child attends/attended?
  • How much did your location impact your choice of school?
  • Were any of the following steps of the process of seeking to enrol your child in a the most appropriate school or setting particularly difficult?
  • If your child is about to transition to high school or has already transitioned to high school, has your child's eligibility for specialist school been reviewed?

  • Your Childs School

  • Has your child's school accessed the PWSA Victoria training programs or resources to help them understand PWS and identify how they can best support your child through their educational journey?
  • Are you aware of the purpose of a Program Support group Meeting (PSG Meeting) including how these should be conducted, who should/can be present at the meeting, how these should be conducted, and the information that should be shared with you before and after the meeting?
  • Has there ever been a time where you have needed to use advocacy support services to assist in advocating for support for your child at school, including the Victorian Education Department, Melbourne Archdiocese Catholic Schools (MACS), Association for Children with a Disability, PWSA Victoria?
  • If you answered 'No' above, is this because:

  • Further Information

  • Should be Empty: