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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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Dancing at the Vatican documentary

Dancing at the Vatican is an inspirational documentary telling the story of a seemingly impossible journey made by families bound by the same devastating, genetically inherited disease, Huntington's. The film captures this pivotal moment of hope for Huntington's Disease families in a film that will lift spirits after the ravages of 2020; 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.

HD News Spring 2020

Read our HD News Spring 2020 edition.

National Carers Week 2020

Replay the free online webinars and self-care and wellbeing workshops for carers conducted during Carers Week 2020.

A Caregiver’s Handbook for Advanced-Stage Huntington Disease – Pollard, J. (ed.) 1999

The aim of this book is to familiarise carers with Huntington's disease, so that they can recognise its symptoms and know what to expect as it progresses.
It also includes general principles of care and tips that other carers have found useful.