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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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.

Isolation tips and support for young people and their families 

WORDS AMY HALE
As everything changes around us day by day, in ways most of us have never experienced before, we are feeling a lot of uncertainty – in our own lives, for our families, friends and for the world in general. In a situation like this, both the known and the unknown can cause increased levels of worry and stress, especially for those in families affected by Huntington’s disease who are already coping with a lot.
Access our Youth Connection counselling services.

Global Connections for Huntington’s NSW ACT

WORDS LEWIS KAPLAN
I had the privilege of attending the EHA conference in Bucharest, Romania in October 2019.
Here's a few stand-out presentations and posters and Q&A with John Eden, CEO of the Scottish Huntington’s Association.

Coping with self-isolation for People with Huntington’s disease

Huntington’s disease can be challenging on a good day, therefore preparing for self-isolation and being informed on the best ways to cope during this difficult and confusing time is very important. Below, are some tips on coping with COVID-19 isolation for people with Huntington’s disease.

Coping well and finding resilience

WORDS AMY HALE
Dealing with life’s challenges as a young person can be difficult. School, work, relationships, friendships and family usually provide more than enough to cope with, put the extra challenges HD brings on top of all of this and it’s no wonder kids and young people affected by HD have a much harder path to navigate.

Travel Assistance

Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) is a NSW Government scheme that provides financial assistance towards travel and accommodation costs if a patient needs to travel long distances for health or medical treatment that is not available locally.

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