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’Are they joking?’: Carers offended by Ministry assessments

Diane Moody, 76, cares for her son Shane Chamberlain full-time - Photo: RNZ / Screenshot

Parents who look after their disabled adult children are offended and angry with Ministry of Health assessments.

Many say they are designed to get the Ministry of Health out of paying families what they may be entitled to.

Earlier this year, the Court of Appeal criticised the assessments saying the formulaic approach was inconsistent with the spirit and purpose of the policy for disabled people.

Shane Chamberlain, 51, is severely disabled. His mother Diane Moody has cared for him at home for most of his adult life.

Every three years Mr Chamberlain and his mother receive a visit from Taikura Trust for his assessment.

The Trust is one of 16 providers around the country which carries out assessments on behalf of the Ministry of Health, to determine how many hours a parent or sibling is paid for.

Known as 'my assessment', it's a 20-year-old document which assesses a person's ability to deal with daily tasks such as household management, personal care and social situations.

But Mr Chamberlain's 10-page assessment - seen by RNZ news - is unclear. Some boxes are marked with a cross, and others are left blank.

Taikura Trust says the crosses can mean "yes" or "no".

'Arrant nonsense'

But Shane's advocate Jane Carrigan said the forms made no sense.

"It's arrant nonsense to say a document in answer can either be 'yes' or 'no'. That sort of document should be absolutely clear to the person its being applied to," she said.

This was her view of what happened last time he was assessed.

"They know it wasn't accurate, we had to call them back out, we refused to sign off on it until six weeks later even the CEO came out to see us from Taikura and tried to explain it. The document, it's impossible to explain," she said.

Margaret Spencer cares for her adult son Paul who turns 50 in November and is also under the care of Taikura Trust.

He hasn't been assessed since 2013 because Margaret refused to sign the consent form.

"A lady walked in, she had a laptop computer and to cut it short, it was basically, 'you have to sign on the computer before we can start talking'. I said, 'I can't do that because I can't read a contract, I don't know what you are going to write'," Ms Spencer said.

Mr Spencer's assessment was updated this year after the Trust phoned her. She said she was bullied into signing it because financially she had no choice.

Taikura Trust said the assessment could be viewed on a computer and signed, or a copy could be emailed or posted to the person for review. It said providing a copy was part of the process.

But Ms Carrigan said there was no engagement between the assessor and the family, and they did not know what had been written down.

She said it was designed to work out so-called unmet needs - those needs that can't be provided for free by family and friends but are instead provided by someone who is paid.

She said the Trust's chief executive Sonia Hawea told her the purpose of the assessment was to establish needs that had not been met.

"She said their starting point, quite literally is to find the unmet needs and to only to fund those.

"So you have a person sitting in your house who is making value judgments, nothing more nothing less, about what you and your family member needs and does not need, they do not discuss it with you at that level," Ms Carrigan said.

But the Trust said the assessment was based on a "strengths-based" approach. "Under those standards the discussion should start with the positives and what a person can do, then look at what support they need," it said.

In February, the Court of Appeal urged officials to simplify the laws around disability support services, describing them as verging on impenetrable.

The Ministry said it was working with disability group People First to create 'easy read' versions of the Funded Family Care guidelines, which it planned to release at the end of this month.

But Ms Carrigan was not impressed.

"Easy read! My God are they joking? What pictures are going to make a difference? And they are using an organisation who they fund, to help them make the decisions about how they should this. They have completely and utterly ignored the intent of the Court of Appeal's decision.

"The Court of Appeal's decision is very simple, all they're asking is the Ministry of Health to interpret their policies reasonably," she said.

The Minister and Associate Minister of Health said they were considering advice on the Funded Family Care policy.

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