Huntington’s Victoria has backed the efforts of board member Dr Bronwyn Morkham to stop young people with disabilities going into aged care facilities.
Dr Morkham, who heads up the Young People in Nursing Homes National Alliance, this month appeared at a hearing of the Royal Commission into Aged Care Quality and Safety.
She told the Royal Commission that aged care was completely inappropriate for people aged under 65 with disabilities, including those suffering from Huntington’s disease.
“Right now we have 50 young people with disabilities a week going into aged care because of a lack of alternative accommodation,” Dr Morkham said.
“People are being forced to live in aged care facilities that lack the staffing, resources and expertise to meet their social, emotional and physical needs.”
In her evidence, Dr Morkham said two critical targets should be adopted by governments: by 2022 no young person should go into aged care and by 2025 all young people who want to move out of aged care should be assisted to do so.
Those targets were immediately supported by the legal team that assists the Royal Commission.
Disability Discrimination Commissioner Dr Ben Gauntlett also told the Royal Commission that by 2025 no young people should be in aged care saying it was a “dark and inappropriate circumstance” for Australia to have allowed people to be treated this way.
Huntington’s Victoria CEO Tammy Gardner said the organisation strongly supported Dr Morkham in her efforts to stop young people being pushed into aged care because of a lack of alternative accommodation.
“Across the country we have young people with HD who are stuck in nursing homes where they don’t want to be,” she said.
“Nursing homes are set up to provide care for the elderly in the last months and years of their lives. They are not set up to provide the expert care and assistance that people with HD require.
“We have to have alternative options so people with HD can live at home or in more appropriate community-based accommodation even when the disease progresses and their condition deteriorates.”
Dr Morkham, who has been on the HV board since 2015, said health, aged care, disability and housing authorities needed to work together at a state and federal level to deliver a permanent solution to this problem.
“We have to stop government departments and agencies operating as silos and not working together to provide the healthcare, disability services and housing people need,” she said.
“This can only be fixed through a cooperative effort that ensures all the needs of young people with disability can be appropriately met throughout their lifetime.”
One of the commissioners heading up the Royal Commission, Lynelle Briggs, said the current system was “at best a national embarrassment and at worst, a national disgrace”.
“People with disabilities and young people with disabilities living in aged care should be given the opportunity to have a life and to live in the community,” she said.
“There does need to be speedy action, and my fellow Royal Commissioner and I, Commissioner Tracey, are very committed to making strong recommendations in this area.”
An interim report of the Royal Commission is due by the end of October this year.
Dr Morkham with Tania Giorgio whose sister-in-law Angelina is stuck in a nursing home in Canberra.