Graham Johnson has only months left to live but wants to use the time he has to secure better support for others like him.

Key points:

  • People over 65 years old are not eligible for NDIS money
  • Charities help older motor neurone disease sufferers but do not receive ongoing funding
  • There are calls for the State Government to do more to help

The Adelaide grandfather was diagnosed with a type of motor neurone disease (MND) last year but, because of his age, still considers himself among the luckier ones.

People diagnosed with MND over the age of 65 are not eligible for NDIS support and instead must rely on charities like the Motor Neurone Disease Association of South Australia (MND SA).

“I’ve got ALS, which is the most aggressive one. I’m very keen to stay positive,” he said.

“I get well looked after because I was 62, nearly 63, when I was diagnosed.

“But a person who’s 65 and one day old — nothing.”

Mr Johnson was diagnosed with the terminal condition 16 months ago and has launched a campaign, supported by the SA Opposition, calling on the SA Government to step in to provide support.

“I wouldn’t like to be in this situation and not get any help — that’s just so wrong,” Mr Johnson said.

“The support you get from MND SA and NDIS … I don’t actually have to do anything. I just tell them what I want and they do everything for you. They’re fantastic.

“The fact the Government doesn’t support it just really astounds me.”

Funding an ‘ongoing’ challenge

MND SA chief executive Karen Percival said it was an uphill battle trying to support the hundreds of South Australians with MND in need of care.

“In South Australia, we have the challenge of funding to support people with MND,” Ms Percival said.

Ms Percival said funding of $500,000 annually could make a huge difference for South Australians with MND, ensuring there would be adequate support and services for people to access when they were diagnosed with the disease.

“We have never received State Government funding, so that’s a situation that’s been ongoing,” Ms Percival said.

Graham Johnson (centre) with Opposition health spokesman Chris Picton and MND SA chief executive Karen Percival.(ABC News: Dana Morse)

Premier Steven Marshall said the Government was aware of MND SA’s situation, acknowledging some charities had done it “particularly tough” since the start of the coronavirus pandemic.

He said the Government had authorised a one-off grant payment to MND SA last month.

“We have actually made, or have authorised, a payment to MND back in the middle of December after representations from people from that sector who said they were finding it really difficult to do that fundraising during a very difficult year.

“We saw this a lot with organisations and charities [who] had fundraisers.”

The average life expectancy for those with MND is 27 months from diagnosis.

The State Opposition says four in five South Australians diagnosed with motor neurone disease over the age of 65 die before they receive proper funding and support.

“South Australians living with MND should be able to spend the time they have left with their loved ones, not languishing on a waiting list to receive basic support,” Opposition health spokesman Chris Picton said.