In the PWS Advocacy Space

In most cases, there are no bells and whistles or headline banners that announce much of the advocacy work that we do at PWSA Vic. Instead, we chip away one submission or meeting at a time to improve the information and awareness about PWS in our community.    

What does the PWSA Vic advocacy look like:

  • Completing submissions on behalf of the PWS community about various areas of the NDIS  

The NDIS via their Have a Say page on their website has the opportunity to submit submissions about proposed changes to the NDIS and how they will affect the PWS community Over the last two years we have submitted many submissions either on behalf of PWSA Vic or as a private submission as a member of the PWS community, on a wide range of topics:

  • Supported Independent Living
  • Disability Employment Support
  • Home and living -Supported Disability Accommodation /Independent Living options.
  • Access and Eligibility Policy with Independent assessments

The recent submissions made during the most recent NDIS consultation are now published by NDIS and can be accessed via Have a Say page of the NDIS website.

In some cases, these submissions have also been accepted by the Senate’s Joint Standing Committee for the National Disability Insurance Scheme, for consideration.

  • Participation on consultations and collaborations with other Disability Support organizations, Allied Health Peak bodies and Emergency Services
  • ECSNP (Exceptionally Complex Special Needs Program)
  • Dietitians Australia Webinar Collaborative Support Teams Project.
  • Victoria Police Voluntary Disclosure Program -a part of the First Response Kit which we will hear more about next year.

All the above are examples of PWS advocacy as a collective voice.

It’s important that all PWSA Vic members have a chance to let their voices be heard about issues that affect them and their families.

Many of you do raise concerns about issues when you contact us on the PWSA Vic phone support line. This feedback provides us with important information about what issues are concerning our PWS community. It is often off the back of these conversations that trigger many of the submissions.

Going forward please do not hesitate to contact us at  or ring us on 0451797284 to let us know about issues that are important to you.

Or better still go to the NDIS Have- a- say page on the NDIS website  and provide feedback or submit a private submission.

Remember many voices are louder than one voice alone.

Avatar photo
Article By Kate de Josselin

Kate de Josselin has worked in Education for 30 years, both in classroom and leadership roles. She is a highly qualified teacher with Special Education and TESOL qualifications. Kate is an experienced trainer who is able to call on her 42 years of personal experience supporting her son who has Prader Willi Syndrome, to give a unique insight into what it means to live with Prader-Willi Syndrome. Kate holds a position on the board of the Prader-Willi Syndrome Association of Victoria as the Vice President and Training Co-ordinator.