People with Prader-Willi Syndrome really want to grow and be their best. They will thrive and enjoy life, with your support. There are lots of strategies to adopt.
Prader-Willi Syndrome (PWS) is a complex, multi-stage disorder. The person will need health services and disability services to support their inclusion in education, the workplace and the community.
The health and disability needs change throughout the stages of the person’s life.
Getting NDIS support
The National Disability Insurance Scheme (NDIS) is being introduced across Australia. The NDIS provides funding to support disabled people to live better lives.
What do you need to do?
There are many steps involved in the process of obtaining and using NDIS funding. Guides specifically for PWS are available from the PWSAA to help you. Go to the Preparing for the NDIS meeting page first.
Is the person with PWS eligible?
The NDIS provides disability releated services to those in the locations where NDIS has been implemented. Check the NDIS program and eligibility.
If the NDIS has not reached your area yet, you may be eligible for some help from your State department of human services (disability).
Food access management
Anyone looking after a person with PWS will have to know about food security and how to manage food access in different environments.
- Food Security Concepts brochure
- Food Security: The TRAIN model – Dr J Forster, Pittsburgh Partnership Conference video
Social scripts are useful for families and care givers because they help people with PWS complete their activities with less anxiety. Learn more about the Social Scripts Tool.
Get support in your role from Carers Australia (and State branches)
You may be eligible for a Centrelink Carer’s Payment or Allowance from the Federal Government. This is different to the NDIS.
Preparing for the NDIS video – An NDIA staff member talks about how carers can prepare for the NDIS.
PWSAA was founded by parents of children with Prader-Willi Syndrome (PWS). As parents, we know exactly what you are experiencing – we’ve been there too. There’s a piece of advice we give to families with a new diagnosis of PWS. Do not believe everything you read about PWS. All too often, the picture painted of PWS is bleak. It threatens to overwhelm most families to the point of despair. We are glad that you have found us. We want to let you know that no matter what you have read or heard there is hope. Get involved. There are many therapies that can help your child reach their potential.
We know it’s hard to believe right now but PWS does not define your child, they will develop their own beautiful personalities and will bring you so much joy. They’ll amaze you and teach you so much about inner strength and the ability to fight very hard. It is important to remember that first and foremost they are individuals, they just happen to have PWS. Here’s some information to help you with the early days….
- PWS diagnosis: What would you tell yourself? Video of parents with young PWS children (Canadian Foundation for PWS Research)
- Coming to terms with the diagnosis – from the UK
- First Steps: A Parent’s Guide to Prader-Willi Syndrome – A booklet from Canada
- Our Babies – A collection of hopeful stories about PWS from parents in the UK
- Other families in the PWSAA are happy to talk to you. Become a member of the Association.
Age specific information is provided
All children with a disability can benefit from participating in early intervention services and mainstream pre-school programs like childcare and kindergarten. These will help your child with social, language, gross motor and fine motor skills. Practicing the skills is essential for early brain development.
Access early intervention services:
- An Overview of Early Intervention Services and Supports from DSS Australia
- Early childhood intervention and why it’s important
- Early intervention – what to do
For those interested in early childhood intervention, look in your State:
Prader-Willi Syndrome in the Younger Child – An overview booklet from the parents perspective
The Raising Children Network – It has lots of information about playing, learning, disability rights and family life. Check the PWS overview page on their website.
The Services Pathfinder has helpful diagrams.
Your child may be eligible for services from:
Better Start Program – an Australian government initiative provides funding for a range of early intervention services
Kindergarten Inclusion Support packages may be available in your State. See Victoria’s KISP example
Some hospitals in Australia hold PWS clinics. A variety of specialists will be available to help your child. Typical health issues are listed by Monash University in Health Services Checklist for Prader-Willi Syndrome.
You may need to increase the knowledge of your health, disability and pre-school service providers. The following information can help:
- PWSA USA – Essential early childhood behavior management strategies
- American Academy of Pediatrics – Health Supervision for Children With Prader-Willi Syndrome
- Noah’s Ark Specialist Toy and Resource Library – PWS Fact Sheet
- People with PWS need to be under the care of a dietician who understands the differences in PWS metabolism and calorie needs. Get the comprehensive Need to Know – Prader-Willi Syndrome Nutrition Booklet from the University of Queensland.
Children with PWS will need a variety of supports during their primary years, even if they are attending a mainstream school. Go to the educators page to learn more.
- Exercise and Physical Activity for children with Prader Willi Syndrome – University of Queensland
- Help the school know your child – Ideas on how to break down barriers
- From the Canadian PWS Research Foundation: 101 Prader-Willi Syndrome Tips from parents, for many aspects of life.
Young people are keen to do all the things that teenagers enjoy. Supporting them gets everyone out and about!
General advice about the school years
During the adolescent years, families may experience a greater need for respite services. Each State works differently. It is suggested that contact be made with the Council of your local government area, which sometimes has services. Otherwise try the humans services department. A case worker there may be able to recommend services.
Also try the relevant State branch of Carers Australia.
New health issues may emerge as the person grows and hormones change. Look at the Good Health Checklist for different facets of health to monitor.
When the person with PWS turns 16, they may be eligible for a Centrelink disability pension and associated supplements. Prepare your application early and gather supporting evidence.
As young people with PWS are growing up, it is important to give early consideration to future financial management plans, for when they come of age. It cannot be assumed that parents or carers will have an automatic or legal right to manage their finances. Also, it cannot be presumed that youthful acceptance of guidance, and compliance regarding the appropriate spending of money will carry through late adolescence and adulthood. Some young people will be quite happy for others to manage finances on their behalf. But many will find this an extremely emotional and challenging transition if preparations have not been made well in advance.
With unrestricted access to money there is the obvious issue of inappropriate purchasing of food items, putting both long term and, potentially, short term health at risk (eg binge eating and necrosis). There is also the risk of inappropriate and expensive purchases, unwise entering of contracts and manipulation by others.
Have gradual and incidental conversations with your son/daughter about what supports will enable them to maximise independence as they grow towards adulthood, and before pension and NDIS funds become available. It is important for them to feel empowered and for you to gain an understanding of what preparations you will need to be making. Discuss the options available to keep them safe with their money and ultimately their health. Contact the Office of the Public Guardian (or equivalent service) in your State for information on the formal options that are available and for advice or answers to your questions.
It is well recognised that quality food security relieves anxiety for someone with PWS. The same could be said regarding money security – as with food, once the management and routine for money is settled and consistent, a person with PWS is free to enjoy their life.
An example of the concept of financial adminstration is explained on the Public Advocate’s website.