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The Support at Home system is “broken”, “not fit for purpose” and “immoral for this program to continue as is”, says Motor Neurone Disease Australia chief executive officer Clare Sullivan.
Opening the fourth panel of Tuesday’s Senate inquiry hearing into Support at Home in Canberra, Ms Sullivan warned that people are dying prematurely, getting stuck in hospital and being forced into residential aged care unnecessarily.
She told senators that most people requiring support to continue living independently at home “are not affluent” but are pensioners “living just above the poverty line”.
“Support at Home helps them with things like toilet seats so they can safely use the toilet, showering,” Ms Sullivan said. “For people with MND, they’re already facing the most horrendous disease, a rapid deterioration of their bodies, devastating impacts on their families, their carers and, of course, themselves – and a torrent of medical bills.
“The highest level of funding secures just two hours a day of care. That’s enough to get out of bed and have a shower. No help with anything around the house, no respite for their carers, no help moving, being repositioned or turning during the day.”
Acknowledging the government’s decision to provide a person with MND faster access to Support at Home, Ms Sullivan emphasised that faster access to inadequate funding doesn’t solve the problem.
She flagged four key issues with the existing Support at Home program:
- funding does not reflect the real cost of caring for someone with MND
- the allocation is meaningless unless it can be turned into care
- non-invasive ventilation – used to support the flow of natural air through a nose or face mask – is not covered
- the Integrated Assessment Tool is failing to capture people’s actual support needs.
Disconnect between system and lived experience
Echoing comments made earlier in the day by Council on the Ageing NSW CEO Gohar Yazdabadi, Ms Sullivan said “we have broken one of our most basic social contracts – that people, as they age, will be supported in their homes.”
Appearing alongside Ms Sullivan was Dr Julie-Ann Christian, who is living with MND, and her daughter and carer Jayne Christian.
Ms Christian painted a bleak picture of interacting with the aged care system, pointing in particular to the inadequacies of the IAT in effectively capturing and understanding what it is like to live with MND.
“It’s very frustrating, because we know that in law and policy, there’s a spirit that it’s meant to embody,” she told Senators. “And it’s the job of people working in the system to make sure that the lived realities align with that, and there is just such a disconnect with what people are living with, what people think is happening, and what’s happening in between.”
Ms Christian and her mother Dr Christian are both Burramattagal women living on Wiradjuri Country in Wagga Wagga, but their ability to travel back to their traditional Country in Burramatta (Western Sydney area) has become increasingly difficult.
“Returning to Country trips are an important part of social and emotional wellbeing,” Ms Christian said. “Mum had Covid-19 back in February, and since that time, she’s needed the powered wheelchair – we’ve had to buy that ourselves, we’ve had to buy a car ourselves to put it in, and we do that because it enables us to get back to Country and be part of community events.”
Barriers to respite
She said she also looked into residential aged care respite care options but found they only allowed bookings within two weeks, preventing any forward planning.
“We were paying $65 a day, and a minimum stay was two weeks. So that’s at least $900 to access any respite – and I wasn’t even accessing it to get away from Mum,” said Ms Christian. “I picked her up every day. It was just to have the safe environment.
“Because we couldn’t rely on that, I reached out to the cottage respites, and we were encouraged to use that, and then after we used that a couple of times, they rang and said that we couldn’t have the next visit because they were fully booked, and when I just asked some real questions about that, they weren’t fully booked – they just would have had to have rostered on two people to look after Mum and they weren’t even giving us that option.
“And we were paying $91 a day for that support, where I was still picking Mum up, looking after her through the day, and it was just to have the adjustable bed.”
The mother and daughter have since taken trips by themselves, but this requires Ms Christian to bring a StairSteady, commode chair, walker and powered wheelchair. They also have to juggle all of the equipment in a motel room because the alternative is not being able to make those trips at all.
“And at some point, we won’t be able to go back. So we need to use the time that we’ve got to do what we want to do,” she said. “But there’s no respite pathways that address what our needs are as a carer or someone living with MND. If someone happens to die the week that you want a room in an aged care centre, they’ll let you use it. That’s not good enough.”
NewDirection Care CEO and Founder Natasha Chadwick also appeared at the hearing. Australian Physiotherapy Association general manager of policy and government relations Katherine Utry and APA physiotherapist Scott Lynch appeared via video link.
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