NDIS cuts plans for Huntington’s sufferers, forcing them out of their homes and into facilities for care

Sufferers of the rare disease known as Huntington’s are having their NDIS plans cut back, with many in WA facing removal from their homes if they want to continue getting care. Huntington’s is a genetic disease affecting one in about 8000 people which causes nerve cells in the brain to break down over time and impact the ability of movement and speech. Claremont mother-of-two and Order of Australia recipient Ann Jones lost her husband to Huntington’s in 2007 and is concerned her two daughters Tracey and Julie — who both inherited the gene — will be removed from their homes and put into facilities, after the NDIS informed her Tracey’s at-home care would be “stepped down” from 24 hours a day to 16. The letter informed her that by December Tracey — who is at the end stages of the disease — will need to move to a facility where she will be one of three patients. “It was our understanding from the beginning as and when the needs increased so would the hours and funding to allow both Tracey and Julie to stay in their own homes,” she told The Sunday Times. “For 30 years I’ve been holding my family together as best I can to make this journey okay, to then be told you’ve now got to hand your daughters over to a person to look after them and two other people, it’s shattering me to be truthful.” Ms Duffield slammed the cutting care and said a three-to-one ratio would “result in significant risk to individuals, including the carer”. “I thought days had gone where we force people out of their homes and put them in residential settings,” she said. “According now to NDIS they have said to our clients that it’s too expensive and not good use of Government funds for our clients to be allowed to stay at home.” Ms Jones and Ms Duffield have contacted NDIS Minister Linda Reynolds about the issue but had not heard back. The WA Senator would only say she was “committed to making the NDIS better for all participants, and to ensure it endures for many generations to come”. A National Disability Insurance Agency spokesperson said participants’ funding “may go up or down”, but confirmed almost 30 per cent of Huntington’s sufferers on the NDIS had their funding decrease over the last 12 months. “A participant’s NDIS plan funding is based on the functional impact of their disability, and the reasonable and necessary supports they need to live an ordinary life and to assist them to pursue their goals,” the spokesperson said. Shadow minister for the NDIS Bill Shorten slammed the cutting of care for Huntington’s sufferers as “completely heartless”. “This family needs support so they can spend important time together, not fighting unfair NDIS bureaucracy,” he said. “It is scandalous that the pleas of Tracey’s mum Ann have been virtually ignored.”