Young People with Disabilities in Residential Aged Care
by Beau Donelly, Weekly Times, Melbourne, 6 July 2011
Jaimee Busbridge has another name for the Department of Human Services. She refers to the government body, responsible for looking after Victoria's disabled and disadvantaged people, as the Department of Inhumane Services.
Last year, the softly spoken 24-year-old was told she had only one option: after being diagnosed with Parkinson's disease and spending almost a year in Epworth Hospital, she was to be moved into a nursing home.
According to the DHS, unless someone already receiving funding died, she was destined for a life of 5pm dinners and bed an hour later, instead of living at home with her family.
They told me that no one gets the amount of funding I needed anyway says Busbridge, who by this stage was wheelchair-bound from the debilitating effects of the disease. "I said I was sorry for being alive.
Busbridge had never considered the possibility of moving to a nursing home. "I thought nursing homes were just for old people," she says. "I was devastated."
The fact is more than 6000 people with disabilities under the age of 65 live in nursing homes across Australia - including 1500 in Victoria.
In 2006, the Council of Australian Governments funded a $244 million program to move young people with disabilities out of nursing homes and into purpose-built facilities that could meet their healthcare and social needs. The Younger People with Disability in Residential Aged Care Program also focused on diverting future admissions and providing specialist support to those who chose to stay in aged-care facilities.
Victoria received $60.2 million over five years to roll out its version of the program, My Future My Choice, and delivered 22 new accommodation and support facilities catering for 104 young people with disabilities. It also provided 70 support packages, including communication aids, better equipmentsuch as electronic wheelchairs, and access to socialisation programs for patients who wanted to stay in nursing homes.
The program, which those in the health, disability and aged care sectors hailed as a life-saving initiative, came to an end last week as the five-year funding commitment drew to a close.
Busbridge is one of 104 young people who benefited from the initiative. Her life-changing ordeal began just after Easter last year when she started losing her balance and dropping things.
At first she didn't think there was anything wrong. "I remember waking up one morning and I couldn't feel the right side of my body," Busbridge recalls. "I just thought it was 'dead' from sleeping on it.
When her condition deteriorated, she was admitted to the Epworth where she was diagnosed with early onset Parkinson's disease, a degenerative condition affecting the central nervous system, and a rare form of dystonia, a neurological disorder restricting muscle control.
Although doctors cleared her to leave after a month, she remained in hospital for 54 weeks because there was no funding for the carers and equipment she would need to go home.
According to Bronwyn Morkham, director of lobby and support group Young People in Nursing Home Alliance, more and more young people will find themselves in Busbridge's position following YPIRAC's end on June 30.
Young people in nursing homes largely have disabilities due to accidents or illness. Theyre discharged from hospital and need more care beyond what disability services can provide, and nursing homes are the only ones to respond. But they alone don't have the capacity to provide the level of care needed. We need health and disability services to partner.
Any one of us could find ourselves in this position so the question is: "What would you expect?"
"I've had parents say to me that if they had known their child was going to be in this position, they would have turned their 'life support' off. Families become exhausted and 'the' system falls over.
"While both the state and federal government say they will continue the program. there is no confirmation of funding. Neither the Parliamentary Secretary for Disabilities and Carers Senator Jan McLucas, nor Community Services Minister, Mary Wooldridge, would provide details of funding beyond the program's conclusion last week.
The federal government has committed $122 million to support those who have already benefited from YPIRAC but, without state funding, industry sources say the number of young people forced into nursing homes will increase.
Di Winkler, occupational therapist and founder of the Summer Foundation - an organisation committed to moving young people out of nursing homes - estimates 70 to 80 young people in Victoria will have to move into nursing homes every year unless funding is restored.
"It's hugely traumatic for the family who, at first, wonder if their loved one will survive and then have to advocate for basic services like rehabilitation, before they're shipped off to a nursing home," she says.
For Busbridge, life has turned out as well as could be expected. She lives in one of six self-contained apartments and has access to 24 hour care. "I'll never be able to go home, but I'm so lucky to be here," she says. "I think it's disgusting that the program is ending. But for my future, I'll just see what happens. I don't think about tomorrow - I'm just living now.”
LISA Comment: Nothing surprises us with the DHS any more! They are capable of any questionable activity, as no one owns the organisation, and everything is no one's responsibility!
Extra 1: With the NDIS based mainly on ISPs, CSO service providers will have increased bad debts as the DHS & VCAT condones families who say we don't have to pay, and you can't stop the service to our family member..... More on this later.
Extra 2: For years many group homes have been little more than hostels or staff workplaces. Now its official, as WorkSafe can assertively 'PIN' (Provisional Infringement Notice) anything which resembles a real home environment..... More on this later.