Janet McKinney has lived most of her life with lipedema — a hereditary disorder that causes the painful accumulation of fatty tissue in her lower limbs.
When she was in her 50s, Ms McKinney was also diagnosed with Ehlers Danlos Syndrome, which affects her joints.
She was accepted into the National Disability Insurance Scheme (NDIS) trial, which she says transformed the quality of her life.
But that all came to a halt in July 2019 when she twisted her leg getting into her wheelchair and fell, resulting in a dislocation of her left kneecap and right knee joint.
After surgery and 10 weeks at the Canberra Hospital, she was transferred to the University of Canberra Hospital for rehabilitation — where she was forced to remain for more than a year due to a lack of suitable accommodation in the community.
"After the first six months, the only reason I didn't come out for the following 12 months was because I had nowhere to live," Ms McKinney said.
"I had a very positive attitude when I went in — I tended to have that with life — I had things to do, I was determined that I would remain active and alert."
But she said after about a month, "depression got a hold" of her.
"Thankfully they [the hospital staff] were able to get psychologists in for me quite quickly," she recalled.
"I had immediate access to the help I needed, but I didn't really want to go through another series of depression and mental health struggles."
Accommodation found after 18 months in hospital
After extensive work by hospital staff in preparing a Change of Circumstances application for NDIS, they found a provider and a suitable house.
But it was still a further six-to-eight weeks before the accommodation was prepared and Ms McKinney could leave the hospital
Ms McKinney spent 18 months in hospitals in total — two birthdays and two Christmases — and while she said she received excellent care, the hospital system charged her $400 per week to stay, resulting in a $14,000 debt.
"Just to top it all off, this was the time we were restricted to the hospital because of the bushfires and the COVID pandemic," Ms McKinney said.
"I was aware that I was taking up a much-required bed that others needed."
Ms McKinney now lives in supported independent living accommodation in MacGregor.
"I was determined right from the beginning that this wasn't going to stop me living a good life and putting good things in my life," she said
"While the house I share with another person is wonderful, new, and easy to keep clean, there are a lot of aspects where it still restricts me from doing things I wish to do and live a normal life.
"Despite all of this, I have a good life and have many activities I like to do to keep me stimulated and bringing joy to my day."
Hospital backlog 'due to NDIS delays'
Ms McKinney isn't the only NDIS recipient who has spent months in hospital unable to discharge due to a lack of suitable accommodation or support.
In December 2020, there were approximately 18 patients waiting for NDIS actions and funding to be discharged from Canberra Hospital.
As of August 3, 2022, there were four people in hospital in the ACT who were medically ready for discharge who didn't have an approved NDIS plan, and 14 who did have an approved plan but were yet to discharge.
Throughout the COVID-19 pandemic health systems have been under severe pressure — compounded by beds being taken up by patients who the ACT government says experienced delays in National Disability Insurance Agency (NDIA) negotiations, the approval of NDIS plans, and the arrangement of support services.
To try and ease the bed block, the ACT government is working with the NDIA and Canberra Health Services to streamline the process, reduce red tape, and increase transitional and medium-term housing.
ACT Disability Minister Emma Davidson said on any given day there were between 10 and 20 people in hospital who could be at home with their NDIS plan in place.
"Because it's a small number we are able to look at their individual circumstances and work with the NDIA to get them home faster," she said.
"The main thing is making sure the right people are talking to each other and the right information is getting to decision-makers.
"Nobody wants to be stuck in hospital a day longer than they need to be."
Unlike other jurisdictions where housing is difficult to come by, Ms Davidson argued the main problem for NDIS recipients in the ACT was red tape.
"There are cases we've seen in the last few months where easier and quicker access to assistive technology would help them to get home faster," she said.
"Part of the difficulty in that was just getting it approved by the NDIA.
"Improving communications so we can get those approvals faster will help.
"But if we can just make it easier to access the physical tools that people need so they don't have to order something and then wait for it to arrive — that can also help."
