A terminally ill Canberra mother says she's tired of spending the last few years of her life fighting with the "penny-pinching" National Disability Insurance Scheme (NDIS).
Sandra Baldwin, 50, was diagnosed with motor neurone disease (MND) in November 2019.
The single mum, of a fourteen and nineteen-year-old, was told she only had two years left.
A month later, her mother died of the same degenerative condition.
But Ms Baldwin says her final days are spent in her Belconnen apartment, choosing between battling the National Disability Insurance Agency (NDIA) or spending money she would rather leave to her daughters.
"It's all hard enough as it is without all of this other stuff. A lot of the time, the mental game is a lot harder than the physical challenges I have," she said, getting emotional.
"I have my own plans for how I want to go. But when you don't get what you need, I just think I might as well go sooner. What's the point, you know?"
When time is of the essence
Ms Baldwin said after waiting four months for her first NDIS wheelchair, she had degenerated so much that she needed another one.
She initially used a simple $500 chair gifted by her parents before a "generous supplier" gave her a powered wheelchair in advance of payment.
"To get into a $10,000 wheelchair was amazing, sort of like going from an old VW car to a Porsche, [and] I was lucky that the supplier let me have it," Ms Baldwin said.
But the NDIS did not pay for the chair for three months, leaving her fielding calls from the supplier without knowing how long it would take for her funding to be processed.
"Three months' time, it's like it's too late. You need this stuff straightaway when the need arises, [and] they're not going to give it to you when you don't need it," she said.
Because her condition again deteriorated so rapidly, Ms Baldwin soon needed a new chair. Her current chair is from a hire company and paid for by the NDIS.
The NDIS is "incredibly confusing" for people with neurological or degenerative diseases, CEO of MND NSW Graham Opie said.
"It was never built for people with rapidly progressive disease," he said.
"It sometimes can be a battle to get the funding. And then on top of that, it's often a long way before the equipment becomes available."
Mr Opie wants there to be specialist NDIS planners for people with neurological diseases so that funding plans can be fast-tracked.
On September 30, the NDIS had 822 participants with MND as their primary disability.
An NDIA spokesperson said every individual receives a specific plan and support.
"Due to the progressive nature of MND and other neurological conditions, a holistic approach to planning is undertaken," they said.
"[We have] implemented several initiatives to ensure it is meeting the needs of participants with changing needs, including greater flexibility in the use of plan funding, simpler processes for minor changes to plans and easier access to assistive technology."
'I want that money for my kids'
The former public servant decided to buy a $3500 bed hoist herself, using money from her superannuation.
"I could not be bothered going through the process. The headache and the anguish that it causes me because I get so furious with them," she said.
"But then I sometimes think, well, why should I have to? I've worked, I paid my taxes, and there's a scheme here that is supposed to be available for me to use [but] they make it so hard.
"I've got a 14-year-old, and I'll probably be dead next year. So I want that money for my kids."
Once she could no longer use her first powered wheelchair, Ms Baldwin gifted it to MND NSW.
All her medical equipment will be donated to the same organisation when she passes.
"My old wheelchair has had four people use it already, and they're so thankful, they send me gifts," she said.
"I actually thought that, even if it takes a year to get [a] new wheelchair, and I might be at the end by then, at least someone can get it, and they didn't have to fight for it like I [did]. And it shouldn't have to be like that."
No time for recourse
Mr Opie said while the scheme had its issues, it was a "boon" compared to the previous support.
People aged over 65, who cannot access the NDIS, have an even bigger struggle in getting funding, Mr Opie said.
But the reality is dark for terminally ill patients who want to complain about funding decisions.
"There are some things where the NDIA will dig their heels in and just won't budge, and it's up to the individual as to whether they take it further," Mr Opie said.
"[But] by the time it gets through that whole process, often the person is dead."
A love-hate relationship
Ms Baldwin said she had a love-hate relationship with the scheme and was grateful for many things she had received.
This includes ramps, handrails in the bathroom, an automatic door and support workers. But she feels she has had to struggle for the "big ticket" items.
"I'm grateful for the service. Anywhere else, in another country, I wouldn't have a wheelchair like this to begin with. But if it's there, we might as well have it work properly," Ms Baldwin said.
"You have these battles with them that are like penny-pinching over a dollar.
"You're dealing with your weakest and most vulnerable citizens, and we need to be treated a little bit differently."
On Monday, the NDIS approved a third wheelchair for Ms Baldwin as her health continues to decline. She hopes to have it by Christmas.
Both, she expects, will be her last.
Read more from The Canberra Times' campaign examining the future of the NDIS:
- NDIA: the national disability agency in need of 'more heart' at the top
- Australia, this is why we need to talk about the NDIS
- 'No longer sufficient': Former top cop's NDIS fraud warning
- Marcus 'needs to stay in his home': a mother's fight for her son
- 'Marking their own homework': Why Shorten rejected advice on NDIS review
- 'Like same-sex marriage vote': How NDIS costs debate is harming people with a disability
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Cost and benefits: The NDIS budget debate
