‘Really overwhelming’ breakthrough for MND patient denied by NDIS

The response to the story of a father-of-two with motor neurone disease, who needs around-the-clock support that the NDIS is refusing to cover, has been overwhelming.

Luke Dore and wife Sarah were hanging by a thread but emails and offers of help came flooding in after their story was broadcast yesterday.

In even better news, his NDIS funding plan including critical overnight support was approved this morning, meaning Sarah won’t have to get up four times a night to make sure Luke doesn’t die in his sleep.

“There’s some really beautiful comments in there that were so supportive and to see a whole group of people that we’ve never met before, to throw their support behind us, it’s really overwhelming,” Luke said.

“I’m so happy for Sarah and the kids as well that we can just spend time focusing on what’s important.”

Sarah said they were grateful but “a little bit disappointed too, to think that this could have been avoided”.

Earlier

Every time Luke Dore goes to sleep, he fears he won’t wake up.

The father-of-two lives with motor neurone disease (MND) and requires 24-hour care, especially at night, but the NDIS (National Disability Insurance Scheme) won’t cover it.

The 40-year-old played semi-professional ice hockey.

One day during practice in October 2024, Luke took to the ice and fell over.

“I thought it was something wrong with my skate,” Luke said.

“A friend of mine who’s a radiologist saw twitching in my legs and said that it was maybe something a bit more sinister.”

A month later, Luke was diagnosed with motor neurone disease.

Read more

Jolly's NDIS package was cancelled. Now he's forced to drag himself to his upstairs bedroom each night

He was put on a plan with the NDIS which covered daytime support and new equipment.

But toward the end of last year, Luke’s mobility deteriorated.

After already losing function in both legs, he lost movement in his right arm and left shoulder, and his respiratory muscles began to weaken.

He now sleeps with a breathing machine he cannot remove by himself, and uses a separate machine (with assistance) to help him cough.

Luke’s NDIS plan needed to be revised to include urgent active overnight care.

His doctors, therapists, nurses and MND support team all submitted letters to the NDIS, but he was declined.

“We were just told that was their decision and if we don’t like it, we can appeal it,” Luke’s wife, Sarah, said.

She become Luke’s unofficial overnight “on-call” carer, on top of her job as a full-time teacher and a mum for their two daughters Peyton, 13, and Piper, nine.

Sarah began logging her nighttime care routine for Luke over two weeks, but when it was submitted, the urgent overnight care was denied again.

“He has to fight so hard for something that... should just be provided,” Sarah said.

Luke and Sarah appealed the NDIS decision, which is now under internal review.

They were told in an email from the agency that it could take up to 60 days.

The National Disability Insurance Agency (NDIA) wouldn’t disclose specific information relating to Luke’s case when contacted by A Current Affair, instead issuing a statement to say: “The NDIA is highly responsive to meeting the needs of people with degenerative conditions.

“The NDIA aims to complete decisions for cohorts requiring prioritisation within two to five days,” the agency, which implements the NDIS, added.

According to MND Australia CEO Clare Sullivan, MND cases are usually processed by the NDIS within seven days, due to the nature of the disease.

“People with MND need fast-tracked access, they need prioritised funding decisions and they need the support in their homes to keep them in their homes,” she said.

“It does seem to be an outlier in what we’re seeing more broadly with people with MND and their processing of NDIS applications.”

Next month, a major overhaul of the NDIS will begin which will include changes to the eligibility process, budget cuts and new requirements for providers.

“There’s a degree of uncertainty,” Sullivan said.

“We just don’t know what the government’s plans are.”