National Disability Insurance Scheme (NDIS)

Get the right NDIS Plan in place

Prader-Willi Syndrome (PWS) can have a significant impact on behaviour, learning, mental and physical health, community inclusion and social relationships. Early intervention should begin as soon as a diagnosis of Prader-Willi Syndrome has been made as it can result in significant improvements in cognitive, academic and social outcomes.

It is essential to get the right NDIS Plan in place, with the help of the National Disability Insurance Scheme. Learn more about preparing for the NDIS on the Prader-Willi Syndrome Australia website. Most Planners will not have heard of PWS, and you will need to educate them on the complexities and advocate heavily to ensure adequate supports for the term of your plan.

The National Disability Insurance Scheme (NDIS) is administered by the National Disability Insurance Agency (NDIA) and was introduced after 30 years of hard work by the disability sector. NDIS uses various government funding to provide eligible participates the supports required to allow them to live a fulfilling life as is expected by all Australian citizens. 

As the NDIS has rolled out across Victoria services once offered by other government agencies have closed. As you would be expected with any undertaking of this magnitude there have been many teething problems which are still being remedied. The NDIS is an absolute lifesaver for many individuals and their families who struggled financially to provide the supports required. However, the system can be time consuming and confronting when you must present the deficits and weaknesses that hinder your child instead of concentrating on and celebrating their strengths and achievements.

The NDIS model works with you effectively ‘employing’ your support workers, services and suppliers. Although It may be easier when your child is young to be guided by the therapists once you have chosen a service provider, you will however be involved in the choices made for your child and can even change services if you are not happy. This may sound overwhelming now but needs to be explained as in the past the therapy your child received was dependant on what the service provider decided was best and how many staff were available. You often did not have a choice how often your child received therapy.

When you have received a block of funding for your child’s therapies this belongs to your child to use (within set guidelines) and you and your service provider, will discuss how often and what therapies are best for your child within the budget. 

How to apply for NDIS funding and Early Intervention services

The National Disability Insurance Scheme (NDIS) has now rolled out in all areas of Victoria. However, due to the vast number of participants intake can take some time. To remedy this problem for infants and young children requiring immediate access to Early Interventions the following steps are in place.

You may be referred to an Early Childhood Early Intervention (ECEI) Partner while in hospital. Families are able to self-refer to their local Early Childhood Partner or make contact with the NDIS through the call centre on 1800 800 110 and you will be directed to an Early Childhood Partner in your local area. You can also find a list of Partners on the NDIS website.

An ECEI Partner will speak to you and access your child’s needs. In the case of Prader-Willi Syndrome you will receive support from NDIS. They can help you to apply for intake or you can do this simply online. While waiting for intake the ECEI Partner will organise short term interventions as outlined below. 

After intake you will meet with an NDIS planner to put together a funding plan for the following 12mths. There are many services that provide brochures, workbooks and even courses on determining what you would like to see included in your child’s plan. It is indeed a steep learning curve, but you can always reach out for help.

Once your plan has been approved you will need to choose a service provider. There is no easy way to choose a service unless your choices are very limited, or you have prior knowledge. Word of mouth and referrals are the best way to go. 

Therapist will help you work on your child’s developmental, health and support needs.  Your baby’s needs will change as they develop as will the type of support the therapists and family workers will offer.

A good ECIS service will be family focused and will value your input into the nature of the treatments. Support will continue from birth to school entry and beyond as required. Support may include or offer help in connecting to; therapy, counselling and service planning. They can also provide advice and assist with applications and reports that may be required for childcare, kindergarten and education. You can also access local services available to all children, such as community health centres, regional parenting services and play groups.

Families as Planning Partners Workshop

The Victorian Advocacy League for Individuals with a Disability (VALID) offer a free workshop to help families understand the NDIS and provide them with tools to advocate for the rights and interests of their family member with a disability.

These workshops are delivered by parents with personal experience of the NDIS and are delivered in a user-friendly format. The Prader-Willi Syndrome Association of Victoria (PWSA Victoria) recently partnered with VALID to provide this workshop to our families and feedback provided was overwhelmingly positive.

For more information about the ‘Families as Planning Partners course’, please visit the ‘Families as Planning partners‘ page of the VALID website

NDIS Community Support

There are many great NDIS community support groups on social media that can help with NDIS queries. Some of our favourites are noted below:

NDIS and PWS Facebook group – This group is for parents and primary carers of people with PWS living in Australia. It is a place to share ideas and obtain feedback around developing PWS specific NDIS Plans, establishing “whole of life” plans, understanding currently available support and exploring support deficits, developing NDIS Goals and preparing for NDIS Planning Meetings.

NDIS Low Risk AT ideas for Kids Facebook group – This group is for parents to share ideas of low risk AT items they have seen or bought for their children with special needs.

NDIS Self Management Hub Facebook group – The purpose of this group is for participants and families to crowdsource information that is directly related to self-managing, by sharing experiences and asking questions.

Further Information

For Prader-Willi Syndrome and NDIS specific information, we recommend you visit the Prader-Willi Syndrome Association of Australia website.

Intervention Therapies

Find out more about Intervention therapies that may be suitable for your family.

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