About 1,500 younger people with disabilities live in aged care in Victoria
Many are there because they couldn't access the support services they needed in the community
Some younger people with disabilities are now trying to leave aged care, because of the coronavirus risk
For the past four months, Debbie Dick has lived through Melbourne's coronavirus pandemic in an aged care home, fearing for her health and unable to hold her husband's hand or give him a hug.
The 58-year-old was moved to an aged care home in Altona Meadows, in the city's west, three years ago, because she has a spinal condition that requires a high level of care. She is one of an estimated 1,500 younger people who have a disability and are living in aged care in Victoria.
Her home has not had any coronavirus cases but has gone into a lockdown that doesn't allow any visitors, which means Ms Dick can't see her husband Ian.
"It makes it so hard to try and express your love when you are not allowed any contact," she said. The last time the pair were able to hold hands and hug was in March when they celebrated their 30th wedding anniversary before the first wave of coronavirus sent Ms Dick's aged care home into its first lockdown.
Ms Dick has requested the National Disability Insurance Agency find alternative housing for her outside of aged care.
"I want to be able to spend quality time with my husband and hold hands," she said. Debbie Dick celebrates a Christmas with a friend at her aged care home. (Supplied: Debbie Dick)
She said she was fearful about the risk of living in aged care while also having a compromised immune system.
"I am considered high risk with anything like that and I am quite concerned because there is no restriction of people moving around this facility," she said.
"I sometimes have residents walk into my room, they suffer from dementia, don't know where they are or what they are doing, and they walk in.
"If we do get the virus here it is going to be a struggle to keep it to certain people."
It is a fear being felt across aged care in Victoria, where there are more than 1,000 active cases linked to the sector, which has also accounted for many of the state's deaths.
Residents say aged care should have done more, earlier
Susie is another younger person with a disability living in another aged care home in Melbourne.
The former martial arts expert was diagnosed with a neurological condition in her early 40s.
She suffers from extreme pain, has lost the ability to walk and requires a high level of personal care.
She is living in a home that has had three positive cases, including two staff members and one resident.
"I'm anxious, annoyed and angry," she said. Susie said more should have been done to prevent the spread of the virus. There are more than 1,000 active cases of coronavirus linked to aged care in Victoria. (ABC News: Margaret Burin)"Prior to the [latest] COVID outbreak we had the residents still sitting in the general area eating, not being a metre-and-a-half away," she said.
Susie said her home had a deep clean after the positive cases were detected but it wasn't done well.
"It was piss poor, they weren't spraying the entire area of my room, they missed parts of the floor, they didn't spray under the bed," she said. Susie said her facility was also struggling with residents with dementia wandering between rooms and carers were going from resident to resident in the same gowns and personal protective equipment.
"If they go in my room they come in wearing the same gown that they have gone into another person's room," she said.
Susie has also requested a move out of aged care.
She said as a woman in her 40s she should never have been housed in aged care in the first place.
"I hate being here, it is not a life and now I am susceptible to contracting an illness that could possibly kill me," she said. Advocates want young people out of aged care homes The Young People In Nursing Homes National Alliance's Bronwyn Morkham said young people ended up in aged care because the support and services they required had not been available in the community.
"The situation with the virus, the COVID virus, has exacerbated the situation for these young people who feel very worried and frightened about the risks they face catching the virus in aged care," she said. She said the Federal Government had a target to have no younger people entering aged care by 2022.
Her organisation has been helping about 10 people try to move out of aged care during this second wave of the pandemic. Bronwyn Morkham says younger people living in aged care in Melbourne are stressed about the coronavirus risk.(Supplied: Bronwyn Morkham)
"Many of these young people have complex health conditions themselves and they want to be out of the aged care service where they can feel a bit safer in the community," she said. The National Disability Insurance Agency said it had been speaking with participants in Melbourne and the Mitchell Shire to make sure they were still getting the support services they need.
"The NDIA will work on an individual basis to find a suitable and safe alternative for participants who have a goal to move from an aged care setting," a spokesperson said.The Victorian Department of Health and Human Services (DHHS) said it was working with the Commonwealth to reduce the risk of the spread of coronavirus in residential aged care facilities.
"The Commonwealth also provides assistance to enable residents in aged care who meet the National Disability Insurance Scheme eligibility criteria to find appropriate alternative accommodation," a DHHS spokesperson said.
"Decisions to move residents of any age to an alternative site, such as a hospital, are made on a case-by-case basis."
The department said the relocation to an unfamiliar setting could have negative impacts on some residents' wellbeing.
The ABC has also contacted the federal Department of Health for a response.