Marcia Bourke was admitted into a nursing home in December 2012.
Sharon Jacobs wanted to “curl up and die” the day she admitted her 48-year-old-sister Marcia Bourke into a nursing home in December 2012.
Earlier that year, Marcia, a mother of two, had suffered a severe brain injury during a motorbike charity ride. She went from being a woman who “lived life to the fullest” to sharing a room with a dementia patient and another elderly lady who was bedridden and incommunicative.
It was not uncommon for Marcia to be put to bed at 3pm and left there until 11 the next morning.
She became so depressed and would plead: “Help me.” Her doctor put her on the strongest antidepressants available and by the time of her 50th birthday, her family prayed she wouldn’t see her 51st.
“It was cruel, it was really cruel,” an emotional Ms Jacobs told the Senate hearing into the adequacy of aged care for younger Australians with disabilities.
But Marcia’s outlook changed, almost instantly, when in June last year Sharon received a phone call.
That day was like “winning the lottery”, she told the inquiry. The woman on the other end was Janet Hickey from Young Care, a not-for-profit organisation that supports Australians with disabilities.
The message was bright: a place was available for Marcia at a purpose-built villa funded by another not for profit, Northcott.
Marcia thrived in her new surroundings, which included fully trained staff, her own bedroom, a purpose-built bed, furniture and TV. She showered in her chair instead of having bed baths, she was allowed regular visits to local cafes, shops and the park, and could wear jewellery.
Within two weeks Marcia began using the bathroom. By three weeks she was operating her wheelchair and was able to take herself between rooms.
“It is incredible, the change,” Ms Jacobs said. “Now when I go to visit I don’t get ‘Help me, no, no ,no’.”
Marcia’s story is just one of many told to the Senate inquiry, which held its second day of hearings in Sydney on Thursday. Marcia is among about 6000 younger Australians with disabilities living in aged care because they have nowhere else suitable to live.
“We’ve got to do something for these people, it’s just cruel, it’s not right,” Ms Jacobs told senators.
Peak advocacy and not-for-profit groups appearing before the inquiry stressed the biggest hurdle they faced was the lack of suitable housing options.
These can range from retrofitting their own homes, in-home assistance, supported share accommodation and supported individual accommodation.
Concerns were expressed that this critical factor and primarily state issue could be overlooked by the National Disability Insurance Scheme, which is being trialled before a full roll-out in 2016.
The Senate’s community affairs committee is due to report by the end of June.