Jordan and Logan both suffer from an extremely rare genetic condition that means they can't absorb nutrients from food or drink.
Jordan and Logan both suffer from an extremely rare genetic condition that means they can't absorb nutrients from food or drink.

Family’s outrage over NDIS funding debacle

EXCLUSIVE

Brothers Jordan and Logan Weir suffer exactly the same rare genetic condition but in a nonsensical twist one of them receives $100,000 a year more in support from the National Disability Insurance Scheme.

Neither of the boys from Raymond Terrace near Newcastle can absorb vitamins from food or drink, they are incontinent and survive by being hooked to a tube for 16 hours a day that directly feeds their bloodstream.

What's even more absurd is the brother who suffers an intellectual disability on top of the rare disease gets the least funding from the NDIS.

Their grandfather Chris Walker says the intensive care required by the boys is putting an enormous strain on the extended family also coping with a cancer and a stroke patient and another with a second rare disease.

"We have two brothers that have exactly the same disease, why can't they get the same access to the NDIS?" he asks.

An NDIS spokesman told News Corp they had reached out to the Weir family "to apologise for their experience with the NDIS".

"We will continue to work with them to ensure Jordan and Logan have the appropriate funding for their support needs, including respite services and personal care supports."

 

 

 

Jordan and Logan Weir with their grandfather Chris Walker. Picture supplied.
Jordan and Logan Weir with their grandfather Chris Walker. Picture supplied.

 

The ridiculous funding disparity has underlined fundamental problems with the scheme meant to help Australians with a disability and comes as a new report shows the scheme is failing people with rare diseases.

A McKell Institute survey of 771 people with a rare disease and their carers has found more than seven in 10 people with a rare disease report not having their health and disability care needs met.

One in four of those who applied for NDIS funding missed out, half of the respondents reported spending more than $1000 a year on treating their rare disease and some are waiting over 18 months for vital equipment under the NDIS.

Four out of five people experienced delays in receiving support from the NDIS and one in five said the NDIS had made their situation worse.

A Victorian woman told the survey it took 18 months, three appeals and lawyers and advocates getting involved before she secured funding.

"It was a soul-destroying, horrible process that made me feel like a useless burden," she said.

A mother explained how if they had waited to receive a standing frame from the NDIS it would have been six months too late, as by then her daughter would have lost the ability to stand and bear weight all together.

"The unmet needs are overwhelming for people who live with rare disease. The National Strategic Action Plan for Rare Diseases is the next step in supporting better quality of care, and quality of life for Australians and their families," said Nicole Millis, CEO of Rare Voices Australia.

 

People with rare disease are being let down by the NDIS. Picture supplied.
People with rare disease are being let down by the NDIS. Picture supplied.

 

The Weir family's experience with the NDIS highlights the highly stressful nature of obtaining NDIS funding.

Jordan had a respite care package funded by the NSW government and was told he would automatically get NDIS funding, but the agency lost his application and it was 12 months before funding was finally provided in June 2017.

His brother Logan had his NDIS funding application rejected despite suffering the exact same condition.

The family appealed to the Administrative Appeals Tribunal in December 2017 and in June this year Logan was granted $127,000 in NDIS funding.

However, two days later his brother Jordan had NDIS funding slashed to just $30,000. The family is currently appealing against this decision.

The report calls for Australia to implement a Rare Disease Strategy, to set up rare disease centres of excellence and introduce personal care plans for sufferers.

It also wants existing information on rare diseases centralised with a searchable data base, for delays in access to NDIS equipment urgently review and a 'fast tracking review' category for people with rare diseases introduced.

Opposition NDIS spokesman Bill Shorten said "people with disability are struggling with a system of radically inconsistent rulings and an NDIA hamstrung by outsourcing and a rigid staffing cap".

The fact two siblings with similar conditions received dramatically different outcomes "is a disgrace, and the Liberals need to scrap the cap on the NDIA so the scheme can function as intended", he said.



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