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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Position Statement: What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease

Abstract Background Huntington’s disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a person’s functioning. It begins after a healthy start in life and leads through the relentless progression over many years to complete care dependency and finally death. To date, the disease is incurable. The long progressive complex nature of ... Read more

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

Did you know that we offer free Huntington’s disease identity cards? They provide information on HD and have space for emergency contact details. The cards can be attached to a lanyard to help others understand, or kept in a wallet in case of emergency. If you or someone you love would like a HD ID ... Read more

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

Australians need more protection against genetic discrimination: health experts

Authors: Jane Tiller and Paul Lacaze Published: October 5, 2021 Source: The Conversation Excerpt: Genomic testing — the ability to read an individual’s genetic code and identify their risk of conditions such as cancer — has opened up huge possibilities in personalised medicine. But it has also introduced serious ethical challenges. Particularly, there is ... Read more

Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination

Studies in the sociology of genetics have shown how living with a predisposition to a genetic disorder often comes with significant psycho-social burdens and struggles. One of these struggles is the fear of genetic discrimination. Despite genetic non-discrimination regulations, research shows people still worry about being subjected to genetic discrimination. This article adds to this existing body of literature by showing why people still worry about genetic discrimination and how they cope with these worries.

1800 244 735

NDIS planning

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.

Search for more articles

Audience

Topics

Position Statement: What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease

National Conference recordings

Medical ID card

Carer Emergency care plan

Australians need more protection against genetic discrimination: health experts

Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination

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Phone: 1800 244 735