In a radical experiment, disabled people are choosing who cares for them and how they want to live. But as Government has found out, the ambitious programme is totally unaffordable.
Faisal Al-Harran has been shuffled through countless disability services in three different New Zealand cities.
The 22-year-old from Palmerston North is a high-functioning autistic. He is a brilliant problem-solver and loves fixing electronic devices. But he struggles with social situations and suffers from anxiety and stress - a condition which his family say was triggered by severe bullying at high school.
"He is a very demanding person who puts a lot of pressure on me and my wife," said his father Saad, 68. "We are senior citizens now and we get very tired."
The family was thrown a lifeline last year when Al-Harran, 22, was approved for an ambitious Government programme being trialled in the lower half of the North Island.
Mana Whaikaha allows disabled people and their families to get assistance in accessing all the Government funding they are entitled to with the help of people called Connectors. It also gives them control over what they spend their funding on.
"There was so much good publicity about it, we thought that finally Faisal would be able to be independent and happy," Saad said.
While the pilot programme has shown promise, it has not yet lived up to the Al-Harran family's expectations. Saad said his son requires around-the-clock care but has only received a personal budget which covers about 20 hours a week.
The programme, which was launched in October, is billed as the great hope for the disabled community in New Zealand. It is based on 10 years of trials and research, and two earlier programmes in Christchurch and Waikato. Crucially, Mana Whaikaha was co-designed by disabled people and their families.
Put simply, it is an experiment in giving disabled people all the support they need and letting them choose how they want to receive it. Such is its appeal, families with disabled children have been moving to Palmerston North, Horowhenua, Manawatu, Otaki and Tararua in the hope of getting access to it.
A lot is riding on the two-year, $24 million pilot, because it will form the template for a nationwide disability service.
But the first signs of concern about its affordability emerged in documents obtained by the Herald under the Official Information Act.
The head of a Christchurch-based disability services provider, Craig Hutchison, expressed concern about the way the pilot was being described in a planned media release in February.
"The way it's written now would suggest that this is the way of the future," he told the Ministry of Health.
"In fact its costing much more to operate the scheme," he said, adding that it was "not sustainable".
That concern was echoed by advocates.
NZ Disability Support Network chief executive Garth Bennie said the idea that a radical new system which recognised people's true needs could be covered within existing funding limits was "pure fantasy".
"What the prototype has illustrated very clearly is that when you … make the system easier to access and easier to use, not only are people able to demonstrate that they have large areas of unmet need but it also opens the gates to another 15 or 20 per cent of people who come out of the woodwork who are clearly eligible for services but are not known about or have not found the system accessible until now," he told the Herald .
He added: "The prototype is fulfilling some of its early promise in revealing what the true level of need might be. But that of course is quite challenging for Government in terms of resourcing."
Associate Health Minister Julie Anne Genter said Mana Whaikaha was still in its early stages, and was being regularly monitored. She admitted that more people had sought access to the scheme than had been anticipated.
When it was launched, the Government said 1600 disabled people would use it. The exact number who have applied for it is not known.
Asked about Mana Whaikaha's affordability, Genter said officials would evaluate how much it was costing compared to traditional services for the disabled. She said one of the objectives of the programme was to support disabled people within the existing budget for Disability Support Services.
However that budget, totalling $1.26 billion a year, is under significant pressure.
The Herald revealed last month that officials were asked by the Ministry of Health to find savings of $90 million at the beginning of the year. They proposed drastic measures including limiting meals and showers for the disabled before ministers caught wind of it and intervened.
The budget shortfall remains and there is not expected to be any relief in this month's Budget.
Genter said the Ministry of Health would be releasing its baseline findings on Mana Whaikaha in the next few months.
Saad Al-Harran said he wanted the new scheme to work for his Faisal, but so far it had not delivered.
"We just want to see my son to be a happy person, to not be stressed."