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NDIS planning

NDIS planning 

This workbook has been written for people with HD who are eligible to be an NDIS participant. 

The National Disability Insurance Scheme provides funding support to allow people living with HD to live the life they want. To access the scheme, your NDIS planner will need to understand your needs. Working through this document will help you to prepare for your first meeting with your NDIS planner. 

This is a very practical workbook. It provides step by step instructions to help you to access the NDIS and the support services that it offers. 

– A brief explanation of the NDIS planning process and its language 

– Room for you to write down the supports and services you use now  

– Scope for you to think about what you would like changed to make your life easier  

– Space for you to consider future steps to take to bring these changes into your life  

– All the exercises above will allow you to have conversations about the NDIS that are right for you. 

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National Conference recordings

In May 2021 Huntington's NSW ACT hosted the national conference. This conference was virtual due to the COVID-19 pandemic. There were four key themes for the conference - achieving quality of care; achieving better policy outcomes; achieving better consumer outcomes; and research update.

Medical ID card

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Carer Emergency care plan

The Carer Gateway have created an electronic template for carer’s to use and the latest version can be accessed here. An emergency care plan makes it easy for someone to take over from you in a hurry. It has all the information about the person you care for in one place, so you can get ... Read more

Dancing at the Vatican documentary

An inspirational documentary telling the story of hope for Huntington's Disease families. Showing that if enough people who refuse to give in, come together, anything is possible.

Huntington Study Group education

HSG and its members offer free educational opportunities to providers so they can offer quality care to their patients and families impacted by HD.

Clinical trials: your questions answered

This leaflet has been produced by Roche, in consultation with Huntington’s disease organisations, to provide basic information on clinical trials of medicines.