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DISABILITY Royal Commission

Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

Please consider making a submission to this Royal Commission

The Commission is inquiring into what should be done to:

  • prevent, and better protect, people with disability from experiencing violence, abuse, neglect and exploitation
  • achieve best practice in reporting, investigating and responding to violence, abuse, neglect and exploitation
  • promote a more inclusive society that supports the independence of people with disability and their right to live
    free from violence, abuse, neglect and exploitation.

The Commission is open to receiving submissions from organisations and individuals. A deadline for submissions has not been published.  We strongly encourage everyone with a point of view to tell the Commission which will consider everything sent to it. Click here to go to the Commission’s website and share your story.

The more submissions the better. Up to 10% of those under 65 living in aged care homes have Huntington’s disease. We are aware of a mix of issues but would be very pleased to receive copies of any submissions you make, to inform our own organisational submission.

Here is a link to our submission to the Aged Care Royal Commission earlier in 2020.

“Unfortunately, despite the best intentions of all key stakeholders, those living with Huntington’s disease and its unforgiving progression continue to be inappropriately placed in aged care facilities. This is due to a lack of alternative age appropriate residency options, and staff who are sufficiently skilled to meet the specific needs of community members affected by Huntington’s disease.”

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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.