The Dangerous Waiting Game: How MND sufferers fare against a tedious NDIS system

Imagine your life in the future. You’ve met the love of your life. Your passion is your work. You’ve raised three beautiful children.

And then you’re diagnosed with a death sentence. Motor Neurone Disease. MND. You’ve never heard of the disease before but now realise that you can’t plan your future anymore, you can only take your life one month at a time.

Every month you pass is a personal best. You can’t get ahead of yourself though, because any moment your body could come to a drastic halt and deteriorate so quickly.

This is the struggle of Greg Downton, who has managed to push MND to its limits; surviving longer than anticipated. Greg was diagnosed with the disease in early 2016, but both he and his wife Jean didn’t know the struggle that was thrown upon them.

“We went through months of testing and we still didn’t know have a definite answer,” Jean said in an emotional interview with main supporters of the illness MND South Australia.

“I distinctly remember sitting there and when the neurologist said to us ‘It can’t be anything else’,” Greg said.

“Jean and I just looked at each other and sort of shrugged our shoulders. We looked back at him after five seconds and said “What do we do now?”

Exactly. What do you do now? What would anyone do? MND doesn’t have a cure. It’s like a rollercoaster that you can’t get off.

Is there someone riding this rollercoaster with you? You bet. For Greg, MND SA have sat by him the entire ride and it was only a couple of years ago that the NDIS jumped on board as well.

Greg was the first MND patient in South Australia to go onto the National Disability Insurance Scheme and has seen all the bumps along the way, with many being ironed out. Yet it’s still not perfect and, for someone like Greg who isn’t going to be around for long, there is a lot of planning ahead.

“The plans last for twelve months and you’ve got to try and think of all the things you might need in that twelve months – even though you might not last that long.

“They base everything off your goals. They don’t start asking ‘What do you need? New bed? New wheelchair?’ they actually ask you ‘What are your goals?’ You need to come up with some things that you want to do and want to achieve through your disability.

“For me it was pretty basic, I wanted to stay in my own house as long as possible.

“I wanted to live in the same conditions that I have for the past 50 odd years.

“I want to relate to my family.

“I still want to go on holiday.

“I still want to go out to the shops.

“I want to have coffee with friends.

“All that sort of stuff and then they build the plan based on that. They’ll come up with different budget lines based on your goals.”

Greg is an avid gardener and his true passion is making sure his backyard is always in tip-top shape. He used to be the local groundsmen at one of the large primary schools in Adelaide yet had to give it all up when diagnosed with MND. It’s like Greg himself is a flower and while the NDIS says they’ll promise to water him as soon as possible, it’s an eternity before they finally come to help.

“The really hard thing with MND is that your body can weaken so fast,” Greg said.

“Some people haven’t gotten the luxury I have before. They get their plan done early and when they should’ve needed equipment months and months and months ago, they’ve had to wait.”

And wait.

And wait.

“Some people deteriorate so quickly and by the time they get around to getting their equipment they originally needed – it’s too late,” Greg said.

“People have died before they’ve been able to get their plan up and running. Say if you didn’t put something in your plan, you could ask for a review. But there is a problem with that too.

“If they don’t see it’s necessary, the people from the NDIS will say ‘we don’t’ think you need it at the moment, you can wait till your next plan’ and some people can’t wait.

“The huge problem with MND is that you’ve got this terminally ill disease that you really don’t know how long you’ve got to live, and you’ve got to try and think of everything you might need in the next twelve months.”

Imagine the plan that someone spent so long discussing their “goals” on, rather than their needs, to outlive the patient themselves. The one thing that would’ve helped them possibly survive longer (or at least give what they had left a fighting chance) takes longer to be delivered than the final swing from the Grim Reaper.

I understand its morbid comparing a government run program to the Grim Reaper and his duties. It’s really hard on the Grim Reaper at the end of the day, he hasn’t done anything wrong. He’s just doing his job and he’s doing it right.

In 2017, MND Australia put in a submission to the NDIS to require more funding for their patients and put them in a place for primary care, stating:

“Some NDIS participants have received plans that have had positive, life-changing impacts on their lives, however, many others have received insufficient plans that will adversely affect their quality of life and place some at risk of avoidable hospitalization.

“To ensure the best outcomes for people with MND and to save costs under the NDIS, MND Australia recommends that people with rapidly progressing conditions, such as MND, recognised as early entrants to the scheme.

“The crucial issue to recognise that MND is a rapidly, progressive condition resulting in complex and changing needs and, ultimately, death. MND therefore requires a rapid and responsive approach from diagnosis onwards.”

That was two years ago, and after the slow roll-out of the program people are calling it a “national disgrace” (Michael, 2019) that billions of dollars were left sitting around. $4.6 billion as of the eight of October this year to be precise (O’Mallan, 2019).

Some politicians have been calling for this money to be spent elsewhere, while in May of 2019 the former-Labor leader Bill Shorton promised “a ‘locked box’ to ensure all funs budgeted to the scheme are directed to the NDIS…not redirected to other programs” (Murphy, 2019).

Yet, in the wise words of Greg Downton, the government shouldn’t be concerned about the “left-over” money as it truly is needed by the NDIS.

Greg’s case is a perfect example. His current budget plan is $215,000 per annum, and is reviewed each year – with the most recent one coming in late October – to see what his plan needs to accommodate for the next year. The problem with an MND patient is that you yourself don’t know what’s in store for your body within the next year.

“MND is fairly complex, your body shuts down instantly and you would need a lot of tech equipment to help live your life,” Greg said.

“You would need the right bed, you need enough carers, you’d need wheelchairs, you need all those sort of things.

“In just a few months I could go from being pretty good and lively to suddenly needing two carers to help me do something simple like shower.

“So they deliberately look at all that and create a plan and budget on what I might need, and then the government look at all that and, ‘Well you’re not using all your funds…you’ve got all this money just sitting there in the NDIS.’

“No, I’m not spending all money right now. It’s because I don’t need to. If I don’t need to spend the money on a carer that I don’t need then I won’t.

“If comes to the end of my plan and I’ve only used 60% of my budget, then I’ve actually saved the government money! One of the good things about the NDIS, however, is that they don’t say ‘Well you only used $70,000 this year so you can only have the same amount next year.’ They’re quite understanding of my struggles in that sense.

“But when the politicians ask me Why aren’t you using all your money?’ what do they expect me to say? I have to have it in my initial plan otherwise it will have to go to a review, which is a pain.”

And the review process is even worse. It could take months before the equipment that is granted on a review to arrive, and as we know the patient may not need it anymore by then.

One positive change to the NDIS is the hiring of staff who understand the patient’s condition. Greg has seen the NDIS evolve over time and said that the planning has been made a lot easier now that it’s done by someone who knows what MND is.

“When I was the first person with MND to have a plan, the first guy that I had was sitting there with his head spinning and had no idea half the time what I was on about,” Greg said.

“One of the main problems with the NDIS is that you’ve got people doing plans that, whilst they mean well and they’re trying to help you, but them not fully understanding your disability makes it really hard.

“It doesn’t matter about your goals, if the person doing your plan doesn’t have a fairly good understanding of your condition then it can be pretty awful.

Greg said that things have improved – marginally.

“Now there is one lady that deals with all of the MND SA patients. She helps you with your plan, she’s right up now with everything that needs to be done and what people need.

“Rather than throwing you to the walls and whoever you get, you get, they’ve realised that having just one person dealing with all the MND plans is the way to go.

“They’ve gotten a lot more experience with it all so it’s not as hard to start up a plan as it was for me two years ago.

“They still need improvement though. The people doing the plans should get focused into certain disabilities and left there, rather than moved around.

“I would say there a lot of plans done by people from the National Disability Insurance Agency (NDIA) that don’t really have a good understanding of what they’re dealing with. They’ll ask you ‘Do you really need that?’ even though they don’t understand your conditions and what you require.

“The one thing that would really help the NDIS is to make sure the planners have both a really good understanding of the disability and what is needed to help the patient live, but more importantly make sure they’ve had experience in dealing with people with that particular disability.”

While the NDIS funds have helped make Greg’s life better and help him fulfil his dream of staying in his own home, there is no way around the amount of time recipients have to wait.

Ignore the unplanned planners. The focus should be about reducing wait times, especially for patients with an illness like MND. Changes in their bodies happen drastically and while the NDIS now have years of knowledge of their specific cases, they still don’t seem to have enough urgency in their actions.

If they keep going down the path of uncertainty and failing to adapt and explore different outcomes for different illnesses’, then the NDIS scheme itself might end up deteriorating quicker than expected.

Ironic, isn’t it.