NDIS 'fails' deaf-blind man with throat cancer

A Bullaburra carer is concerned the National Disability Insurance Scheme (NDIS) is letting down the most vulnerable, including a Springwood man whose life is threatened while he waits for more funding.

Ex-cop, Matt Ranson, and his family, are taking care of David Jaye from Springwood, who is deaf-blind, paralysed and was recently diagnosed with throat cancer.

Despite Mr Jaye’s significant disabilities he is only entitled to six hours care a week on his current NDIS plan, despite being “peg fed” by a tube every two hours.

Dare Disability Support Blue Mountains CEO Andrew Daly has raised it as a “matter of urgency” with the NDIS, saying the plan approved was “grossly underfunded”.

“The absence of appropriate support, clearly places David at risk including of being a potential fatality,” Mr Daly wrote in a letter last month to the NDIS.

“Indeed once he commences radiation therapy he will require access to transport and even greater support in the home, I do not believe it acceptable in the circumstances to adopt the view it is a health problem,” he added.

Mr Jaye, 49, survived a rare brain tumour when he was 15 which left him with deaf blindness. Resulting strokes have left him paralysed on his right hand side. His health deteriorated and when his adopted mother passed away he was advised to cease work for his own health. This is when his mate Matt Ranson made the application for funding under NDIS 12 months ago.

“He was found eligible and granted an amount that is grossly unfair,” his carer told the Gazette.

“It funds a person for six hours once a week to assist him to go for a walk, clean his unit, attend medical appointments … unfortunately this funding will run out before the 12 months will elapse.”

The father of four said “we could not let David fall between the cracks and end up in nursing care because he has no family.”

“He requires full-time care. He is fed through a peg tube every two hours and I have to assist him dressing, bathing and toileting. The surgery has left David unable to swallow and it is very difficult for him to now talk or understand him,” Mr Ranson said.

The NDIS was billed as the biggest social reform scheme since Medicare, a scheme set up to give control back to families so they could choose services and products based on their specific needs.

Mr Ranson said they had a meeting with the NDIA last week and are now hopeful of an increase in funding for Mr Jaye. He said “the situation David now finds himself in is all a penny pinching exercise between the Health Department and the NDIS”.

Mr Jaye told the Gazette: “I want to get back on my feet”.

A spokeswoman for the National Disability Insurance Agency, which runs the NDIS, said in line with obligations under the National Disability Insurance Scheme (NDIS) Act 2013,they were “not in a position to disclose or discuss information relating to individuals”. 

In a statement she said the NDIS “funds reasonable and necessary supports for people with disability to increase their social and economic participation. Supports may include personal care and support, access to the community, therapy services and essential equipment”.

“NDIS plans are tailored to each participant’s individual circumstances. This is done during the planning process. Decisions about the type of supports included in a participant’s plan are made based on what is deemed reasonable and necessary for them.”

“The NDIS is not intended to replace the clinical supports or services provided by other mainstream services like the health system.  The NDIA continues to work closely with all other service systems to ensure that participants have access to the appropriate mix of supports.

“If a participant thinks a decision made by the NDIA about them is wrong, they can submit an application for an internal review.