28 Sep 2020

Tetraplegic man fears confinement after funding cut

8:22 am on 28 September 2020

A tetraplegic man fears he will be confined to his bed unfed and untoileted from today, when the Ministry of Health plans to stop funding the carers he relies upon.

No caption

File photo. Photo: 123rf

The Ministry of Health claims he has failed to keep accurate records, and is ripping off the system.

But after a two-year investigation the South Island man hasn't been charged and he's yet to see a final report.

The man, whom RNZ has agreed not to name, has been receiving 70 hours a week of Individualised Funding (or IF) for almost 20 years.

A routine audit in 2018 led to an investigation by the Ministry, which prompted the agency to write to him in June this year accusing him of fraud and lack of record keeping.

It says carers claim he was falsely claiming support, some carers didn't exist or couldn't be found, appropriate records weren't kept and he misled investigators about his relationship with carers.

But the man claims he is innocent and a couple of former carers have ganged up on him. He says the Ministry is taking their words over his.

Under the funding rules, the disabled person is the employer, and they decide who they want as carers and how much they pay them.

That's overseen by someone called a host - who is paid by the Ministry of Health - and they ensure the disabled person is paying their carers correctly and monitor their budget.

Disability advocate Jane Carrigan

Independent disability advocate Jane Carrigan. Photo: RNZ / Ana Tovey

Independent disability advocate Jane Carrigan says the funding isn't as autonomous as it sounds.

"In actual fact you have very little choice and control. Any choices and control you do have are monitored by the Ministry's third party agent, the host".

Despite this, the man says in the nearly two decades he's been reliant on Individualised Funding he's largely been left to his own devices, receiving a visit or phone call from his host once a year.

He says he did exactly as he was told, keeping records, getting his carers to sign his receipt book, and his record keeping was never a problem.

"They told me I was doing a great job. They used to come in and they'd look at my books and I'd show them what I was doing, and they'd say, 'that's good, keep it up,'" he says.

He has offered to stay on Individualised Funding with greater oversight, but the Ministry's rejected that.

Instead it wants to pay an agency to send carers to his house, which would cost the same.

But the man says he's tried going through a care agency in Christchurch, and the care and the process was degrading.

"A total lack of respect, different people everyday. Some wouldn't wipe my bottom correctly, it was just terrible. If I complained they wouldn't listen to me, they talked down to me, the lack of control over my cares gives me panic attacks now if they're like that.

"I was completely humiliated."

Ministry of health

Photo: RNZ / Richard Tindiller

And that's what this case boils down to - who provides his care.

As a tetraplegic he is highly vulnerable and completely reliant on others. As a result he says it's critically important that he decides who provides his care.

The Ministry disagrees.

It's decided he doesn't have the capacity and capability to make decisions and properly communicate his needs.

And it suggests he needs an agent to manage his affairs.

"I'm insulted the Ministry is implying I can't. I don't need an agent, I've been doing it for 20 years," he says.

Meanwhile, the Ministry is out of patience. It says all its claims have been documented and presented to the man, with clear reasoning for each of their claims.

The Ministry says the man failed to provide satisfactory answers and so it has decided to stop paying carers from today.

It says if someone fails to comply with an audit, or to not provide sufficient evidence, it has the right to withdrawn funding.

The man says he has responded, he's just disagreed with their findings.

He doesn't want to think about what will happen from today.

"I suppose I'll be lying in bed with no care. I'm not going to be able to do anything for myself, I'll have no food, no water, no showers. The pressure sores will probably start coming back," he says.

In the meantime, he's lodged a complaint with the Ombudsman, but the outcome of that won't be known before today.

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