The National Disability Insurance Scheme (NDIS) is being criticised by participants after it refused to fund $10,000 for a hearing aid upgrade for a profoundly deaf man and instead gave him $15,000 for social outings.

In a letter to Lawrie Dobson, the NDIS said this funding was to be used for core supports to assist with daily living and participation, and the funds would be paid directly to the support provider.

Veronica Dobson, who advocates for her son Lawrie, has accused the NDIS of ignoring the advice of specialists, not listening and wasting money.

"The NDIS needs to look at the needs of the individual — that is what the money should be spent on — not what they think will be good," Mrs Dobson said.

"We have not used a cent of that."

Upgrade for one ear, but not the other

Mr Dobson, who lives in Rockhampton in central Queensland, had his first cochlear implants 15 years ago, and every few years the outside hearing aids — speech processors — need to be replaced.

Last year, a new speech processor came on the market; it is the first of its kind that can connect to a smart phone, so phone calls and music can be streamed directly to the processor.

It also has two microphones and is much smaller and lighter than its predecessor.

Lawrie Dobson has two different technologies for each of his ears, which his specialist says is not ideal. ( ABC Capricornia: Alice Roberts )

Mr Dobson's audiologist recommended the upgrade, and private health insurance upgraded one speech processor, but funding could not extend to upgrading the second processor.

In the meantime, Mr Dobson was invited to join the NDIS and the idea was to have the second speech processor funded through the scheme.

Mrs Dobson got in touch with the NDIS and they initially gave Mr Dobson $30,000 worth of funding, of which a third was to go to upgrading the speech processor, $15,000 for "core supports" and $5,000 for speech pathology.

But shortly after receiving that letter, the NDIS phoned Mrs Dobson and withdrew funding for the speech processor.

The agency told her that money could not be used to upgrade the speech processor because under NDIS guidelines, technology cannot be replaced if it is less than five years old.

"I tell you, that really knocked me," she said.

"It didn't knock me because of me, but I thought of all the hard work that the audiologist — the person who is experienced in all of this — who had put in all this time in providing NDIS with all the information they needed and working out quotes and everything like that.

"All for what?"

Instead, it continued to fund $15,000 for "core supports" which included social outings, like going out for a coffee or to a movie, Mrs Dobson said.

The letter from the NDIS outlines that the funding for core supports can be used to "explore and participate in community-based activities of interest and to develop, build and maintain friendship, for example, a person to support you to participate in social and community activities".

"But we didn't ask for that funding; we only asked for up to $10,000 for the upgrade of the speech processor," she said.

The NDIS rejected Lawrie Dobson's request because the hearing aid he has had since 2014 is still working. ( ABC Capricornia: Inga Stünzner )

In a letter sighted by the ABC, the NDIS states that one of the criteria for providing support is that "the support represents value for money in that the costs of the supports are reasonable and, relative to both the benefits and the cost of alternative support".

"Reason why this criteria has not been met: funding the upgrade to the Nucleus 7 Cochlear processor is not considered reasonable and necessary at this time."

NDIS stated that it was not its policy to replace technology that was less than five years old — and the Nucleus 6 was fitted in 2014 so it may reconsider this in another year.

Mrs Dobson said her son now had an imbalance with different technology on each side of his head.

"So if he's got one speech processor with two mics — that's the Nucleus 7 — on one side, and then on the other side the Nucleus 6 with one mic, surely there's going to be different inputs of signals and everything going in."

Mrs Dobson said she was concerned there would be many other people out there in similar circumstances to Mr Dobson's also being rejected by the NDIS.

Exhausting process

Mrs Dobson appealed the decision, but it was rejected again.

She was told that she could appeal it, but the process was too exhausting.

"It's review after review," Mrs Dobson said.

"How far can we go?

"We're only parents who have been trying so hard for our children to get the right thing for them, but you come across this brick wall and it can be very, very difficult, particularly when you have a sensory neural deafness."

'He needs to be able to hear properly'

Mrs Dobson said she was prepared to keep fighting as long as she had to, but her health was against her and she was turning 80 next year.

"I think they have to listen to people like Lawrie's audiologist, like his ENT [ear, nose and throat specialist] in Brisbane," she said.

"They know the problems and they are trying to tell the NDIS but the NDIS is not listening," she said.

Dr Anthony Parker is Mr Dobson's ENT specialist in Brisbane.

He said everyone was learning how the NDIS worked and were testing the waters as to what the insurance scheme would fund and what it would not.

"Unfortunately in Lawrie's case, it's black and white," Dr Parker said.

"He needs a new speech processor and they've given him money for other things but the most important thing he needs is to be able to hear properly.

"And without that speech processor, it makes benefits from the other services they supply limited."

Lawrie Dobson will not get as much out of his NDIS-funded services without new hearing aid technology, his specialist said. ( ABC Capricornia: Alice Roberts )

Dr Parker said it would be logical to upgrade the speech processors for both ears at the same time, especially if there were only a few months until an upgrade was due.

"They will work better together, you'll get studio sound for both ears and that will make it easier for your brain to understand and work out what's being said."

Dr Parker said people did much better with two hearing ears than one, and his understanding was that one of the aims of NDIS funding was to give patients the ability to improve their lifestyles and the ability to obtain work.

"And in Lawrie's case, I would have thought they would have approved that."

There was, however, a significant grey zone when it came to funding for those who were profoundly deaf, he added.

Most people with hearing loss do not require cochlear implants, and this was where the Hearing Services Program offers support.

It funds hearing aid upgrades every five years, and it will also fund speech processor upgrades for those aged under 25.

However, those aged between 25 and 65 with cochlear implants were at a disadvantage, Dr Parker said.

"Until the NDIS gives you approval to pay for implant processors, and those implant processors play up and break down, you are profoundly deaf again.

"I think, unfortunately, [it] is a bit of discrimination against people whose hearing is too bad to benefit from hearing aids."

Veronica Dobson says she is frustrated the NDIS will pay for her son Lawrie to have coffee, but not upgrade one of his speech processors. ( ABC Capricornia: Inga Stünzner )

NDIA response

The ABC asked the National Disability Insurance Agency (NDIA) why it would not fund Mr Dobson's hearing aid upgrade but instead fund social outings.

A spokesperson stated: "During the planning process, a participant will identify their goals and aspirations.

"Funding is allocated in their plan in way which supports them to achieve these objectives.

"A participant's NDIS plan can include funding for supports which assist them with daily activities to increase their independence and wellbeing; as well as funding to increase their social and economic participation.

"Other funding might include capital supports like assistive technology."

The spokesperson said the agency understood the concerns of Mr Dobson and his family and would ensure he received the reasonable and necessary disability-related supports he needed under the scheme.

The NDIS says funding is allocated so participants can reach their goal. This is Lawrie Dobson's goal. ( ABC Capricornia: Inga Stünzner )

The spokesperson said they would contact Mr Dobson and Mrs Dobson to address and resolve any concerns.

"The NDIS provides Australians under the age of 65 who have permanent and significant disability with the reasonable and necessary disability-related supports they need to achieve their goals and increase their social and economic participation," the spokesperson said.

"Before including any assistive technology (AT) in a participant's plan, the NDIA must also be satisfied that the support will assist the participant to pursue their goals, objectives and aspirations.

"For new pieces of specialised and complex AT, the NDIA requires written reports detailing clinical reasoning and justifications of recommended options.

"Where this information is provided to the NDIA, it assists in making the decision on the type of AT to be included in the participant's plan.

"NDIA employees have skills and knowledge from the allied health, mental health and disability support sectors, and include a mix of Commonwealth and former state government employees, private sector and not-for-profit staff."