NDIS ignores pleas of Carmel Read whose son Daniel Thomas needs 24/7 care

A 65-year-old mother has called out the NDIS for failing to review her severely disabled son’s funding plan after a much-needed surgery meant she can’t care for him.

A 65-year-old woman, who has undergone extensive shoulder surgery, has pleaded with the NDIS to review her adult son’s funding plan to ensure he receives the 24/7 care he needs while she recovers.

Carmel Read’s 36-year-old son Daniel Thomas is non-verbal and lives with a range of disabilities including down syndrome and autism spectrum disorder.

He is legally blind and has no hip sockets so he cannot walk and is in a wheelchair full-time.

“He’s mentally like about a two-year-old,” the mum told The Advertiser.

“He has no idea of any danger … he isn’t toilet trained.”

Daniel must always be watched, especially when eating, and overnight Ms Read sleeps for only two hours, constantly watching Daniel to ensure he’s safe.

“I went in there (Daniel’s room) one night and Dan had actually … picked his TV up and he had it sitting on his lap,” the Elizabeth Downs mum said.

“It was his way of saying ‘mum, my TV I can’t switch it on, can you come help me?’.

“It’s dangerous if you don’t get up.”

Other nights she might find the walls smeared with faeces or Daniel having wet himself.

Carmel Read and son Daniel, who is 36 years old, but has the cognitive age of a two year old. Picture: Dean Martin

While Daniel has carers for part of his day, his mum, who also works as a carer, takes care of him from 3pm to 10am the following day.

“He gives me a reason to live,” she said.

On April 30, Ms Read finally decided to undergo a much-needed operation on her right shoulder after years of ignoring intense pain.

Ms Read was forced to allocate her son’s NDIS funding to a 24/7 carer following the surgery to accommodate her recovery.

Prior to the surgery she applied to the NDIS to review Daniel’s funding, however Ms Read has not heard from them despite making the inquiry in April.

Each time she followed up, Ms Read said she was told her inquiry had been “escalated”.

Until one day an employee told Ms Read something different, according to her.

“She said, ‘look we have a directive out at the moment, until there is absolutely no funds in someone’s account, we won’t even open the account and look at it’,” Ms Read said.

The NDIA denies this.

“It is categorically incorrect to suggest the National Disability Insurance Agency (NDIA) does not undertake plan reviews until someone exhausts their funding – which could risk a participant’s wellbeing,” an NDIA spokesperson said.

If Daniel’s funding is not increased, Ms Read will be forced to care for her 85kg son, which includes lifting him constantly – potentially damaging her recovering shoulder.

“If … it undoes all the surgery I’m going to be really upset about it because I have never put myself first,” Ms Read said.

“My shoulder was so painful, I just couldn’t handle it anymore.

“I’ve hand-picked my carers, they are brilliant and I do not want them looking after him 24/7 with no pay because that’s not right and I know they would probably offer to help but it’s not right.

“The system has to change.”

Carer Angela Hill, will not be able to continue caring for Daniel if his funding plan is not adjusted. Picture: Dean Martin

Ms Read said she doesn’t trust the system that is meant to help care for her son, especially after he was subjected to horrific sexual abuse at the hands of a male carer while on respite in 2014.

“I’m very strict with who looks after Daniel,” she said.

“No one understands the burden on our hearts that our children will get abused or used, or not looked after to the same ability that we do for them, it’s hard.

Carmel is “petrified” for the future of her son Daniel and what will happen to him when her and her husband are gone. Picture: Dean Martin

“I know an 80-year-old couple, he was diagnosed with cancer, and he took his son and himself and he gassed them in the car, and wrote a letter to his wife and said ‘now you can actually have some time to yourself, enjoy’.

“That’s because the system doesn’t give the help when it’s needed. It’s heartbreaking.”

She is terrified of what will happen to her son after she and her husband Neville are gone.

“I’m petrified of the future … you get people abusing them sexually, you get people not feeding people properly … I’m terrified something like that is going to happen,” Ms Read said.

“And (he’s) non-verbal, he’s really at-risk. It breaks my heart because I love having him at home but it is not going to be forever.”

Ms Read is asking the NDIS to place enough funds to cover 24/7 care of her son while she recovers.

“I don’t care about anything else, it’s just so I can actually recover and do the appropriate recuperation so I can cope again with him,” she said.

“For them to tell you they are ‘escalating it’ over and over it, it’s lying, it’s not being truthful.”

An NDIA spokesperson said the NDIA’s “has received a request for a review of Daniel’s NDIS plan”.

“We apologise this has taken longer than expected, and continue working to progress this as a priority,” they said.

“Where participants may be at risk of exhausting their NDIS funding, we encourage them to continue to use their existing plan funding flexibly to access their required disability related supports.

“Most participants can flexibly use their core supports budget in their plan to assist with their disability-related needs.”

Originally published as NDIS ignores pleas of Carmel Read whose son Daniel Thomas needs 24/7 care