Families caring for adult disabled children are appalled by official attempts to simplify the guidelines for how much support and money they can get.
Diane Moody, 76, cares for her son Shane Chamberlain full-time. Photo: RNZ / Screenshot
Six months ago, the Appeal Court suggested the Health Ministry rewrite its policy for disability support services so caregivers and disabled people could understand it.
But two documents and $2760 later, families say nothing has changed.
In May, the Ministry of Health told RNZ it was mindful of the court's comments and took its responsibilities seriously.
It promised easy read versions of the Funded Family Care Guidelines and Frequently Asked Questions.
The policy requires disabled people to become an employer, even though in the Court of Appeal case the Crown accepted the employment relationship was a "mere fiction".
Diane Moody who took that case on behalf of her severely disabled adult son, Shane Chamberlain, said the documents were a joke.
"I think it's quite pathetic. The booklet is really done so that my Shane would be reading it, to tell me about Family Funding," Ms Moody said.
"Shane's not capable of doing anything like that, I just find the whole thing a joke, quite frankly an absolute joke and the little diagrams down the side are really special, not," she said.
Shane's advocate, Jane Carrigan is equally unimpressed.
She said the Court of Appeal described the ministry's policies as verging on the impenetrable and the new guidelines do not change that.
"They've developed these two 'easy read' documents that are bigger than the family bible and developed these documents on the basis of bad law," Ms Carrigan said.
The whole tone of both documents is that somebody who does not have mental capacity, can still be the employer. These documents are not targeted at the demographic of people who were before the Court of Appeal," she said.
Both documents devote at least five pages to the disabled person's responsibilities as an employer including things like KiwiSaver, ACC and tax.
Complex Care Group Trust coordinator Jan Moss represents a group which supports 250 families of children and young people who have high and complex needs.
"Very few of the documents are ever written in such a way that is inclusive of them," Mrs Moss said.
"So if Funded Family Care was supposed to be for families of people with high and complex needs, then there should be no way that that disabled person becomes their employer. And so no amount of documentation, in easy read or in any other sort of form is going to solve that problem," she said.
Few families apply for support because the process was so fraught with problems yet neither of the documents talked about how to appeal when an applicaton failed, she said.
Just 392 people receive funded family care, about a quarter of the 1600 who were thought be eligible when the policy was introduced.
Peter Humpheries cares for his 30-year-old severley disabled daughter Sian. Despite the fact she cannot speak, is intellecutally disabled and wears nappies, she is her father's employer.
Labour and the Greens need to repeal the law as they promised when it was introduced and increase the caregivers' pay rates, Mr Humphries said.
"We're tinkering with these little booklets. But we need to be tinkering with whole system," he said.
"Partners aren't allowed to do it, even civil union partners aren't allowed to paid to be caring for a disabled person. That needs to change. The rate of pay needs to change. The person who cares for their family member is still on the minimum wage," he said.
He said he wanted the ministry to re-think its attitude.
"They just seem to have this obsession that family members should look after their person if they have a disabilty, but if you put them in care then we will supply everything for them," he said.
"Things have changed, family members want their person at home, but they also want to be financially supported to be able to do that."
The Ministry of Health said the government was still considering what futher changes there might be.