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Where to Start

Here, we will offer you a step-by-step guide to help you find your feet and learn what help there is available. The starting point for accessing information and support will mostly depend on where you live. Each family has different needs and priorities for the best way services can assist them. You are entitled to expect that the range of services available will be flexible enough to be adapted to different family circumstances.
1. After your child is born and the hospital has made a diagnosis, they are likely to refer you to a specialist paediatrician at the Royal Children’s Hospital or Monash Medical Centre (usually whichever is more conveniently located to you).

The Royal Children’s Hospital holds a clinic every 3 months where you can access numerous health professionals and specialists, such as nutritionist, endocrinologist, social worker, psychologist, etc. There is also a Victorian PWS Register to assist with research. This is managed by Tess Lionti at the Royal Children’s Hospital.

Contact the hospital for the clinic dates, or access our Facebook page for current updates. During these clinics you will be able to meet with other families at an Infant Clinic Gathering – an informal way to chat to other parents and share information. A member of the Association will host the gathering which will be held in a room at the hospital before any clinic appointments start (please check the Newsletter or our Facebook page for details).

2. Your local Maternal and Child Health Care Centre. After your initial home visit from the Maternal and Child Health Care Nurse, you can then attend the Centre to access the usual infant health monitoring services by the nurse and links to a range of services and support including playgroups and parent groups.

3. Case Managers – Ask at your Maternal and Child Health Care Centre or contact Department of Human Services (DHS). A Case Manager can work with you to implement a support plan and assist by providing information, referral to services, arranging visits, dispute resolution and service co-ordination.

4. Early Intervention – Your Early Childhood Intervention Service (ECIS) will be your main support centre for those first few years. These services support children with a disability or developmental delay from birth to school entry and their families. ECIS services are funded through the Department of Education and Early Childhood Development (DEECD) and are provided by a range of providers including Specialist Children’s Services teams and early childhood intervention agencies. Within your local centre, you will be allocated a Family Services Co-ordinator (or Key Worker) who will work with you to develop a Family Service and Support Plan, access to the short term Flexible Support Packages which assist children with complex support needs, and information about specialist services.

5. Register with Centrelink for Carer Allowance – Families of children with a disability may be eligible for a range of disability related payments from Centrelink. The Carer Allowance is a payment for people who provide daily care at home to a child with a disability. This payment is not income or assets tested and can be paid in addition to wages or other Centrelink payments. You will also be eligible for a Health Care Card. There are a range of other disability payments and funding that you may or may not be eligible for but you should ask about at Centrelink.

6. Local Councils – Contact your local council or shire to discuss your needs with the Home and Community Care (HACC) team. Also explore your local council directory for other local services, some of these may include respite care, toy libraries, kindergarten services, child care, and school holiday programs.

Through all of these organisations, you should also be offered information about how to access other services that you may require as they become relevant to you and your child. This step-by-step guide is simply a starting point. You will gradually learn which services are important to you and your child, and some of these will be highlighted in THE NEXT STEP.

It is important to remember to ask many questions and accept as much assistance as you can get, as this may help you to make good choices for your child’s future. You will always be able to access more specific PWS information and ask more relevant questions through the PWS Victoria Association.

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The PWSA of Victoria Web Site is intended to provide information only - not to diagnose or advocate particular treatment options. The Diagnosis and treatment of Prader-Willi Syndrome should be made through a qualified medical professional. Thus, it is strongly urged that patients do not change treatment without first consulting their doctor. The inclusion of any resource or link in the PWSA of Victoria Web Site does not imply endorsement.