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NDIS cuts putting the lives of tube feeders at risk.

Australians with disability who require the use of a feeding tube to sustain nourishment are being denied crucial access to both service providers and NDIS funding, according to the industry body that supports them.

Dieticians Australia, the peak body for nutrition and dietetic professionals , is calling on the NDIA to provide clarity and assurance that people with disability who require nutrition care will be guaranteed to receive it.

It comes in the wake of participants they work with reporting a substantial series of setbacks on previously funded supports because of the recent changes to the NDIS.

Lina Belik is a registered dietician who specialises in tube feeding. She says there’s only 7,000 Australians that live with a feeding tube, however they do experience complications associated with tube maintenance.

A hospital admission can set clients back five steps backwards, but the majority of the issues they face can be prevented with adequate support
Lina Belik

The dietician currently supports one hundred and forty clients, including a 28-year old woman with cerebral palsy who lives at home with a permanent feeding tube.

“It's essentially her lifeline,” Ms Belik explains. “All her nutrition costs were cut from $16,000 to $8,000.”

The dietician believes there are inconsistencies in how the NDIA decides which NDIS participants will receive support payments for specialised food formulas.

“I've got other clients who are getting full funding for their tube feeding supplies and formula…that can rank up to about $20,000 to $30,000 a year,” she explains.

Ms Belik argues the recent changes to the NDIS are affecting availability of service providers, which she claims impacts on their ability to advocate for their clients.

“Without access to the right dietician that understands that area…you won't have the right nourishment or hydration to be able to function and live an independent autonomous life, which is the basis of the NDIS.”

Dieticians Australia CEO, Magriet Raxworthy, says the organisation voiced their concerns to multiple government outlets regarding the NDIS cuts which came into effect on 1st July.

These changes came about without any consultation…Nobody from the government engaged with us on this
Magriet Raxworthy

She says healthcare professionals are ultimately concerned about how this will impact the level of choice and control for people with disability within the NDIS.

“This decision flies in the face of the NDIS's very own principles of design. It is putting allied health professionals, including dieticians, many of whom have supported participants for a number of years, in a moral and ethical dilemma,” the CEO says.

“The best thing they [government] can do now is to listen with the intent to understand the level of impact these changes will have on people. We do not want to see this continue.”

NDIS cuts putting the lives of tube feeders at risk

Video transcript

Emma Myers 0:00

Australians with disability who require the use of a feeding tube are being denied crucial access to both service providers and NDIS funding, according to the industry body that supports them. Lena bellick is a registered dietician who specializes in tube feeding, she says there's only 7000 Australians that live with the feeding tube.

Speaker 1 0:29

They are a real vulnerable group. I'm currently supporting 140 active clients who all have feeding tubes, and the majority of my population are adults who either live at home with support workers and carers that come and visit them, or live in disability serviced accommodations. One lovely lady who I support, she has cerebral palsy. She's now roughly 28 years old. She lives at home with a permanent feeding tube. So it's a feeding tube that goes into her stomach, and it's essentially her her lifeline. All her nutrition costs were cut from 16k to 8k because in her situation, the NDIA decided that we don't pay for food. And this is not true, because I've got other clients who are getting full funding for their tube feeding supplies and formula, and that can rank up to about 20 to 30k a year. It's not cheap, so that inconsistency is very noticeable. I'm also seeing at the moment, with the most recent changes, there's going to be cuts to how far a dietician can travel to see these people at home. We need to actually do malnutrition assessments, physical assessments. We need to actually look at the feeding tube itself, and this the condition it's in. And so as dietitians, we're trained to pick up potential infection issues, tube related blockages, and we can then escalate these issues to the relevant doctor and nurse. This puts that particular element at great risk. We're going to see participants running to emergency departments more often with preventable issues. So

Emma Myers 2:09

what is going to happen if people are unable to pay and how will it affect their day to day lives? So

Speaker 1 2:20

the most recent changes to the NDIS are mainly affecting the availability of a dietitian provider. That means they don't have a provider that can advocate for them to have the correct amount of equipment and formula actually paid for. So this is where the issue lies. You're going to get dehydrated, you're going to lose weight rapidly, and that means loss of strength. Loss of strengths means loss of independence and movement. If you don't have the right dietitian to advocate for you, you will be left to sort of fend for yourself in the system. So without access to the right dietitian that understands that area you you just won't have the right nourishment or hydration to be able to function and live an independent, autonomous life, which is the basis of the NDIS. Are

Emma Myers 3:09

there any alternatives to formulas that the cheaper?

Speaker 1 3:14

So one particular area that is gaining a lot of traction in the tube feeding environment is blending real food and having your homemade formula and running that through your feeding tube. But that in itself, also attracts a lot of costs the materials that I use to make feeding tubes themselves, that material is not made to cope with real food. So for people who are opting to make their own formulas at home to combat some financial challenges, are finding that they actually still have the financial challenges because they need more equipment changes

Emma Myers 3:54

dietitians, Australia, the peak body for nutrition and dietetic professionals, it's calling on the NDIA to provide clarity and assurance that people with disability who require nutrition care will be guaranteed to receive dietician CEO Marguerite raxworthy says the organization voiced their concerns to multiple government outlets regarding the NDIS cuts, which came into effect on July 1, our

Speaker 2 4:26

members are incredibly concerned, but we relate their concerns to government. We've also engaged directly with the NDIA to really ensure that they understand the deep impact this will carry for people with disability, healthcare professionals are ultimately deeply concerned about how this will impact the level of choice and control for people with disability. What we really have been asking for is for the government to reach. Really start engaging in meaningful consultation. We've not been heard. Nobody from the government engaged with us on this change. These changes came about without any consultation. This is why we're so concerned, is that not even having a conversation or further discussions about the impact that these changes can have on the levels of choice and control for people with disability, but also the levels of impact that it will have on people living in more rural and remote communities, we do not want to see this continue, and so the best thing they can do now is to really listen with the intent to understand the level of impact these changes will have on people.