Service provider guidesPrader-Willi Syndrome (PWS) is very unusual and extremely complex. Even though people with PWS show some competancies, their health, cognitive and emotional challenges mean that they need life long support for their life-threatening condition.

Information is available for agency and other workers who will be supporting those with PWS.

Community inclusion workers

Understanding PWS: Accessing the community guideline – information about issues that could arise in public and how you can help the participant to be more safe and independent.

Supported employment providers, volunteer and mainstream employers

People with Prader-Willi Syndrome can work very successfully in a variety of work settings, provided appropriate support is maintained. People with PWS can make a valuable contribution to the workplace. However, very few have achieved their full employment potential. In part this is due to the complex nature of PWS. Learn how to support a person with PWS.

Successfully supporting people with PWS in the work place or day program guideline – provides an overview of the issues likely to arise and how to manage them.

People with PWS and Work: Best practice guidelines for employers – from the UK

Residential services

People with PWS need specialist support in residential settings. This unique support allows for restricive practices with food, and helps to manage challenging behaviours. It is often best for all residents of such a home to be people with PWS (or other eating disorder). Well managed restrictive practices significantly reduce anxiety levels for the resident. This leaves them free to focus on building independence and social skills.

Providing PWS support in residential settings guideline. It refers to Australian best practice as well as includes international instructions for PWS residential care.

Learn more about adult support and managing challenging behaviours.

Holistic support

PWS is a multi-faceted disability. There will be many service types involved with a client / NDIS participant. There needs to be a holistic approach to service provision. Refer to other sections of this website to learn about the other specialities you may be liaising with, in particular the Clinicians and Allied Health page.

Learn more about behaviour management on the Parents and carers page.

First steps to understanding and managing Prader-Willi Syndrome – An Australian video for those who support people with PWS.

Social Scripts tool (educational stories)

Social scripts provide words, phrases and/or questions to be said in a specific type of situation. They help with consistent and effective communication when supporting people with PWS. They are a useful preventative technique to educate direct care staff, professionals, family and the community.

Social scripts are useful because they:

  • help people with PWS complete their activities with less anxiety
  • explain common situations where people with PWS may have worries and motivate them to succeed
  • have appealing pictures, easy English, and can be customised for an individual
  • describe environments and activities in a way that sets clear rules and expectations
  • are a preparative tool when discussing new situations (such as food access, loud noises, crowds).

People with PWS have needs that can result in the use of (government approved) restrictive practices to keep them alive and healthy. Social scripts can help reduce the impact of these essential restrictions on other aspects of their lives.

See the list of PWS Social Scripts and save a copy of any you like.