A new service allowing families of disabled people to choose their own respite care has been put on hold because the government wouldn't stump up $10 million.
I Choose would have paid families between $500 to $5000 a year, allowing them to buy the respite support which suited them best.
But the government baulked at the cost of the scheme.
Stacey O'Connor lives in Nelson caring for her 6-year-old son, Daniel, who is special needs.
He is unable to speak or move without help and is fed through a tube.
When she wants to take a break she arranges for a carer, but the Ministry of Health subsidy to pay them doesn't cover the cost and she tops this up out of her own pocket.
For her, the current system is too bureaucratic and inflexible. Despite being allocated 52 days of respite a year, she only claims about 10 days.
"My respite care is kind of sporadic, it's not necessarily the same time every week, sometimes it is. Sometimes it's just not enough even to claim and also if I claim it's not going to cover the amount of money that I need to pay my carers."
"Being a parent of a special needs child, we have huge amounts of administration that's happening all the time and I just haven't found the system user-friendly," Miss O'Connor said.
Having the flexibility to fund a carer herself and to suit her family's timetable would be life changing for her.
Carer Support Subsidy
She is one of about 19,000 people looking after disabled family members receive what's called a Carer Support Subsidy.
It means they can call in help and support so they can get a break - but it doesn't always work out that way.
On average, the ministry pays $76 dollars a day, for about a month of care a year, although some people get more. That rate hasn't changed for 22 years.
Janine Stewart is the co chair of the Carers Alliance, which represents carers.
She said the current system doesn't work for many and giving families control, would make a massive difference.
"In some communities there isn't the services there like the respite bases, or the respite homes. Currently, in terms of respite options around the country, it's very inconsistent, very hard to find what they need," she said.
"For a system that meets individual carers and families needs, it just doesn't do that. There just isn't available enough available in the community and there isn't enough flexibility with that money."
A new respite payment, known as I Choose, which was supposed to start in December.
It would have given carers a lump sum once or twice a year to help them have a short break.
In January, officials held discussions with the Carers Alliance and others about rolling out the scheme nationally.
But there was a problem.
Although the ministry allocates $45m a year for carer support, it only pays out $35m, because people don't use their full allocation. It then redirects the $10m surplus elsewhere.
Ms Stewart said the meeting was told the new scheme would also get the lower amount.
"When we raised that with them it was, yes they allocated, but they only every expected to spend 75 percent, so they've reallocated the other $10m to other things, not that we know what they are, because we don't. But they made it very clear they only had $35m," Ms Stewart said.
Officials hadn't factored in that when families were given choice, control and flexibility over respite care, many more would use it, she said.
The Ministry of Health's own documents show it knew that more people would take up the new scheme - and most would be worse off - if the funding levels remained the same.
The analysis showed:
- 22,500 people would take up the scheme, 3500 than receive the current subsidy.
- 9000 people would get less funding compared to the amount of Carer Support they have been using - the average loss is $1200.
- 6000 people would be between $1200 and $2,500 per year worse off.
- 7500 people would be better off - average increase is $1000.
I Choose has now been put on hold, while the ministry works out how the scheme can fit the $35m budget.
Miss O'Connor wanted to know how the ministry was going to decide who missed out.
"I don't want to miss out. Lots of families who want to access that budget to have the respite care and have the breaks would want that. It needs to be rolled out with the total amount that families are entitled to," she said.
Associate Health Minister Julie Anne Genter refused to say why there was no more money for the scheme.
Instead she pointed to the the record $72m increase in funding disability support services received in this year's budget.
Miss O'Connor had a message for the government.
"Our lives are very full of appointments and meeting and logistics and therapists and specialists and anything that makes it easier for us to do what we do what we need to do to make our lives run smoothly, would be helpful. I Choose would be a fantastic option for us," she said.
Carers are vowing to continue their campaign for a better system.
Although the ministry said I Choose was not ready yet, its website states most people will move to the scheme this year.