Tim Mooney, 25, who has a severe disability, with Dad David Mooney. Mr Mooney and his wife Kathy fear they will lose access to respite services under the NDIS. Picture: Peter Wallis
Tim Mooney, 25, who has a severe disability, with Dad David Mooney. Mr Mooney and his wife Kathy fear they will lose access to respite services under the NDIS. Picture: Peter Wallis

Couple face losing their 50 nights’ sleep a year

A BRISBANE couple caring for their extremely disabled adult son fear they will soon lose access to occasional breaks under the National Disability Insurance Scheme.

But they fear they will soon lose access to occasional breaks from their caring responsibilities under the National Disability Insurance Scheme.

Queensland Health were due to close respite services at the Halwyn Centre, in the Brisbane inner western suburb of Red Hill, from June 30, preventing Kathy and David Mooney from being able to access overnight respite from caring for their 25-year-old son Tim.

Tim, who has been admitted to hospital more than 50 times for stints ranging from weeks to months, has a chromosomal disorder involving the absence of 17 genes which has left him with profound physical and intellectual disabilities.

He has epilepsy and is fed through a nasogastric tube.

"Over the last 10 years, Halwyn was, and still remains, the only service with sufficiently trained nursing staff to care for high-medical needs clients," the Mooneys told Queensland Health Minister Steven Miles in a recent letter.

"This is especially true of nasogastric management and feeding."

 

 

Mrs Mooney said that under Tim's NDIS package, funding was not provided for respite nursing care.

The couple feels the NDIS has "flooded us with unrealistic idealism, hollow optimism and relentless administration" and feel deceived the scheme has failed to live up to its promise of providing people with disability and their families with the care and support they need over their lifetime.

"The NDIS has said there's no money in his package for any kind of nursing support so I don't know where they're going to be able to find short-term accommodation places for Tim," Mrs Mooney said.

"I don't think they exist for his high medical needs."

The Mooneys have been intensively trained to replace the nasogastric tube Tim relies on to eat and drink.

"We're the only people that do that apart from the nurses at Halwyn or nurses in hospital," Mrs Mooney said.

Until the advent of the NDIS, the Mooneys have received between 40 and 50 nights of respite a year from the Queensland Government.

They take frequent short breaks and a two-week holiday once a year to connect with their other four adult children, all in their 20s and living outside Brisbane.

"We never have more than a two-week break at a time and mostly we take short breaks of about five or six nights just so we can get a decent night's sleep because we get up to Tim at night," Mrs Mooney said.

 

Health Minister Steven Miles has assured families of permanent residents the Halwyn Centre will remain open as long as required.
Health Minister Steven Miles has assured families of permanent residents the Halwyn Centre will remain open as long as required.

 

"He doesn't sleep through, he needs to be repositioned, he'll keep banging his head until someone gets up and he'll rub at his tube.

"There's a chance of his tube coming out if we don't attend to him.

"We don't want Tim going into permanent care. We just want to be able to have a break so we can continue to care for him.

"It's really only when Tim goes to Halwyn that we get a break."

Funding of nursing care for people with disabilities has been a big area of contention between the federally funded NDIS and Queensland over which level of government is responsible.

Mr Miles has assured the families of permanent residents of the Halwyn Centre the Government remains committed to keeping it open as long as they continue to live there.

And last night after The Courier-Mail approached his office about the Mooneys' plight, the minister said: "I have instructed that respite services continue for Tim and other consumers at Halwyn beyond June 30."

However, he gave no detail about how long respite would continue at Halwyn.

The Mooneys have called on Mr Miles to investigate "Queensland Health funding or developing a centre to offer a short-term accommodation nursing service for high-medical needs clients that the National Disability Insurance Agency is either ill-equipped or unwilling to offer through the disability sector".

In a statement, the NDIA said: "The NDIS wants to reassure NDIS participants and their families who receive services through the Halwyn Centre that we are working with Queensland Health to ensure they continue to receive the disability and health-related supports they need.

"The agency will work with the Mooney family to ensure their concerns are addressed."


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