Shane Lewis had just turned 65 when he was diagnosed with motor neurone disease (MND). Too old for NDIS and too young for the pension. The ‘limbo’ years. Age and a chronic, degenerative disease meant instead of a smooth path to support, the family had another battle on their hands, the aged care system.
“Life is messy”, Shane’s stepdaughter Nicole shares, “so is growing old. It’s not a document overnight.”
When it comes to the aged care system, “there’s no straightforward process there, the sheer paperwork involved with getting old and getting a terminal illness is beyond a joke and when you get some funding, there aren’t enough people with the right skills to deliver the care”.
His community and family Shane knew was a “legend”. He deserved better. So many in Australia, particularly in regional areas, deserve better. And so his family is speaking up.
“It’s uncomfortable for the person speaking up, and it’s uncomfortable for people to hear it, but it’s uncomfortable because there’s a problem.”
A country boy
Regional Australia was in his blood. “My stepfather was a Alexandra, Vic, country boy who loved black forest cake”.
Nicole recalls the love story. “Mum [Marlene] was a single-parent, she used to keep us afloat through making black forest cakes. She was pretty well known in the Marysville regional Victoria area for them”.
“Someone bought one of mum’s cakes to a party. Shane had a slice and he liked it. They shared that the person that made the cake was a great single lady”. Marlene and Nicole both chuckle and agree, the love story just writes itself. It could be the sweetest love-story in regional Victoria.
Nicole and her sister Amy liked Shane straight away, “he asked us if we were ok with him proposing to mum. He was just genuinely a really nice bloke”.
Marlene smiles, “for the first 10 years of our marriage, he’d buy me champagne and chocolates every single Friday night until I told him not to anymore because we’re both putting on weight”.
“On our honeymoon he pointed out all the shops of fabric that he knew I’d love, stopping to let me look at them. He was oriented to my interests and needs, he went out of his way to care”.
And so when faced with the worst news, his family looked to the system to support him as he had supported everyone in his life. But what they found was an NDIS over-65 age limit, aged care bureaucratic delays and a fractured MND home care support. It was too much on top of too much.
Aged care bureaucratic gaps and delays
“Right after Shane was diagnosed, I needed to take nearly 6 full days off working, where I just did paperwork. Looking back I’m shocked. That was to do all the initial paperwork, that’s not all the extra follow-up”, Nicole remembers. “As a small business owner, that was tough”.
“We know a lady who shared her fight to get NDIS, she did have to fight for it but got a $1.2 million package for her father with MND [who was under 65]. That’s good. That’s probably exactly what he needed. But I sat there, with Shane, and now know, 60% of people with MND are over 65. The most support that we got, that seniors can get, is around $80,000 a year.”
“$80k translated to about 7 to 10 hours a week. For a cruel and rapidly progressing degenerative disease. How is that logical? How is this our system?”
The aged care funding gap is not just in smaller payments as compared to NDIS. It’s in the “maze-like” and “paperwork burden” that’s placed on applicants and families already facing the worst news of their lives.
“Why can’t they put money into making it more straightforward, simpler?”, Nicole asks, “why couldn’t they tell you initially and clearly all the benefits you are eligible for, instead of us scrounging through the system, fighting to be believed, repeating ourselves over and over, ‘yes he has motor neurone disease’?”
The gap in common sense and clarity has a cost, they share. This inefficiency is disrespectful and mindboggling, “we had to provide the letter to say that Shane had a terminal illness several times. And I sat there and said, ‘we’ve already provided this. It hasn’t changed. He’s got motor neurone’s. Wouldn’t you know it, he’ll have it until he dies actually”.
Rapidly progressive disease care doesn’t mix with delays
Shane responded to need when he saw it. With practical help or a mateship chat, it was all in his wheel-house. So when he was given 6 months to live, and “the government told us it could take 12 months to process his application for payments on a disability pension but they’d back pay 3 months. Well, the maths just didn’t add up, did it”.
“Shane had never taken money from the government. He’d started businesses and paid into caring for others.” But because of a few months, what should have been the time for the system to show up for Shane, it bolted.
“There were so many delays to him getting his package because the system is set up that you’re guilty until proven innocent in ‘deserving’ the help, particularly as a senior. He didn’t have a Centrelink number, because he’d never gotten anything from the system, which slowed things down. That was the irony, we’re sitting there going, ‘what the hell?’”
“I can read and write and spell, I have a reasonable level of education, I run my own business and pay my bills”, Nicole says, “I found this so hard, it makes me wonder, how do people do this that don’t have family support and my skillsets?”
MND home care support
After battle one was waged, that of getting the disability pension payments activated, Shane’s family didn’t realise another one loomed.
“We’d been able to ‘prove’ Shane’s worthiness to get the highest Home Care Package and on paper the government considered his needs met”. But ‘on paper’ doesn’t determine care quality. Practical impact does.
Below the surface, “we faced workforce shortages, limited provider availability and a shortage in trained staff in regional Victoria”.
For Shane’s last year and a half, accessing carers with Percutaneous Endoscopic Gastrostomy (PEG) feeding training, medication administration, catheter care became an uphill battle.
Marlene only worked two days out of every month away from home but organising carers with PEG (high nutrition fluids) skills, and catheter management became too stressful. Unreliability was the norm.
“There was no guarantee that a nurse from district nursing or from a provider would arrive on time for mum to go out to the shop she sold her goods in. We were coordinating two different services. A lot of the time they could only cover one day, and then the staff member they were sending couldn’t do what we needed, like the PEG feed and medication delivery, so then what was the point?”
“We had the money to cover the days but there wasn’t enough staff, with the right basic medical skills, to meet Shane’s needs. That’s another blow of a broken system”.
Voluntary assisted dying care gaps
Shane chose to pursue VAD. “He had made the decision and made his mind up, we supported him to do that but there were surrounding circumstances which mean we have to speak up now”.
While Shane eventually received a support package, there weren’t readily available staff to fulfil his care needs. “Within the aged care system we were so restricted in service providers, there was no option to source someone from half an hour away”.
“He told us early on that he might consider VAD, around the time when he wasn’t going to be able to walk or use his hands but the catalyst we think was the care difficulty and how he saw that was impacting him and the whole family”.
Nicole and Marlene are boldly clear, “a lack of timely and appropriate care should never, ever be a part of the equation of deciding to use VAD. That is unquestionably, absolutely not ok”.
“I have a real problem when somebody has to make, or feel that they have to make, that decision because they can’t get the help and support they need”.
Towards a better system
When Australians are truly in need,o n the day ‘bad news’ becomes real, the system should lift with purpose, not lower with paperwork. When people don’t have much time, and call for help, it’s not the time to put care on ‘call waiting’ or “gaps in knowledge from people in the system who should know better”.
Shane’s family believe those with MND, and diseases like it, should have access to support based on care needs and disease progression, regardless of age.
“We have a system which places pressure on seniors to push and fight. And what if you’re so exhausted, you can’t fight anymore”, Nicole shares. “And when you get the funding, there needs to be the staff to do the pragmatic things that people with MND need, PEG feeding and medication delivery should just be basic training. Mum even showed our 10-year old nephew to do it, it’s very possible.”
A legend like Shane
Shane was a legend for his community. Nicole and her family want to be that for others.
“I have advocated over the last couple of years”, Nicoles shares, “because I was, am, in a privileged and supported place to do it, with education, with owning my own business, with family. But I know, if mom was doing that on her own, where a lot of people are, then they have to make a choice. ‘Do I care for the person that needs care and look after myself [survive], or do I fight?’”
Nicole shares the heart-wrenching cost in pursuing justice while Shane was alive, “we wasted time fighting the system, instead of doing things while Shane could still do it.”
“No one in Australia should face those choices, if their loved one is facing the cruelty of MND or another disease like it, that is precious time. Our system can do better, it must do better”.
