TERMINALLY ILL NDIS PARTICIPANT FACING RE-HOSPITALISATION AFTER FUNDING CUT FOR 24-HOUR ICU NURSE

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TERMINALLY ILL NDIS PARTICIPANT FACING RE-HOSPITALISATION AFTER FUNDING CUT FOR 24-HOUR ICU NURSE

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In today’s blog post, I want to share an article published on December 5, 2021 from “The Guardian” and this is about,

Terminally ill NDIS (National Disability Insurance Scheme) Participant Facing Re-Hospitalisation After Funding Cut for 24-hour nurse

Ian Haywood’s partner is blunt when asked to sum up the couple’s latest battle with the National Disability Insurance Agency.

“They don’t think it is ‘reasonable and necessary’ for Ian to have nursing funding,” Bianca* told Guardian Australia, referring to the key legal test for NDIS funding.

“We think it is reasonable for him to stay home and it is necessary in order for him to live. It’s cheaper for them if he dies.”

Haywood, 43, lives with the terminal illness motor neurone disease and is the latest NDIS participant to speak out about what the federal Labor party and disability advocates claim are “stealth cuts” being seen around the country.

Communicating with Guardian Australia via email as he is non-verbal, Haywood said the NDIS had been funding 24-hour nurse care that allowed him to live at his home on the Mornington Peninsula rather than remaining in hospital.

But when his plan was renewed for 12 months in October, he learned it would only cover six hours of care each day from a nurse.

Haywood said he needed 24-hour care from a trained nurse because he cannot breathe for himself: he is mechanically ventilated via tracheostomy and needs urgent help if something goes wrong.

“Usually it’s something simple like a leaking valve, a nurse with ICU experience can identify the problem and resolve it,” Haywood said. “But without a nurse I would be long dead of asphyxia before the ambulance arrived.”

The funding was initially provided by the agency after he won an internal review of an earlier decision last year, Haywood said.

Now, the NDIA has said it will no longer fund the same level of support.

“My particular concern is that I have a ‘deadline’ of around mid-January when the nursing funding runs out, at which point in the worst case I would have to go to ICU and wait for it to be resolved,” Haywood said.

During question time in parliament last week, the government was asked about several cases where participants and their families have been forced to appeal large cuts to NDIS plans.

Disability advocacy organisations have also told Guardian Australia they are being swamped with requests from participants for help to appeal against the NDIA’s decisions.

“It just seems so pointless to have to re-litigate the same issue [24-hour nursing care] when the need has previously been established,” Haywood said.

Bianca said she had experienced nightmares during that last process. “I’d be like dreaming that he died,” she said.

Haywood was diagnosed with motor neurone disease five years ago this week.

Until then he’d worked as a child and adolescent psychiatrist.

“Now I can’t move very much at all,” Haywood said. “I can wiggle my wrists, I can turn my head slightly, and I can blink and move my eyes. Some additional movements are still present but not under my voluntary control: for example I will smile if told a joke.”

Still, Haywood said there was plenty he could do. He uses a button under his left wrist that allows him operate a computer to use the internet, watch films and read books.

Last week, Haywood took part in a kitchen table Zoom meeting with the Voices of Mornington Peninsula political group.

He prepared his contribution and shared it with the group when it was his turn...

Continue reading at: https://intensivecareathome.com/terminally-ill-ndis-participant-facing-re-hospitalisation-after-funding-cut-for-24-hour-nurse/