Demand for help from disabled people and their families has soared with thousands coming forward for the first time.
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The government is spending $24 million over two years on three new pilot programmes in Manawatū, Waikato and Christchurch to make disabled services more available from a younger age.
The Disability Support Network, which has released its sector briefing, estimates that's brought in another 15,000 people needing help around the country.
The new programme is designed to tap into a larger group of disabled people and to offer them more choice and control about the support they receive.
The network's chief executive, Garth Bennie, said that had led to a 25 percent increase in the number of people and families seeking help.
"Obviously when you make a system more accessible and more flexible you tend to generate demand and expectation and that's exactly what's happening. Up until now what we've essentially had is a system that's been very effective at hiding and suppressing need and lowering expectations," he said.
Dr Bennie said the system was so complex and so focussed on rationing demand to keep costs down, people have been missing out - particularly those who are Māori, Pasifika, rural and poor.
A parent who knows this first hand is Rachel Lodewyk from Gisborne.
Her 17-year-old son Oliver suffers from Morquio Syndrome, a rare inherited condition, which has confined him to a wheelchair since he was seven.
Five years ago, they installed their own ramp, but it's no longer suitable and now with greater independence he needs a self-opening door so he can come and go.
"When you are 16, you're still under child development services for your equipment, for a wheelchair, for all of that sort of stuff. But at 16 you go into adult services for modifications in your home and so the process has taken so long that now that he's over 16, we are now income and asset tested for any modifications for our son, even though he's in child development services."
That means the family is going to have to take out a $20,000 mortgage to pay for the ramp and door themselves.
Ms Lodewyk is kicking herself for not applying earlier but said she did not know about the discrepancy.
"This is so he can come to school and back, to get in and out of our home independently. Now we have to mortgage our property, so that he can get to school. And it just doesn't sit with me very well. I feel like we've really done everything we can for all our children and now at this stage there's this weird clause.
"Everything seems delayed and delayed and delayed, so that eventually it's not funded," she said.
Ms Lodewyk said the Ministry of Health was aware of the issue but said they have no plans to change it.
Under the new system being trialled, she and her son would be able to get help earlier and would have a greater say in the services they receive.
CCS Disability Action is one of the providers working for the MidCentral pilot and chief executive David Matthews was sceptical about the new approach and whether it would be good for everyone.
"We have seen some better packages and we've some not so good packages. It is really very early days and we would only give it a bare pass mark at this stage and that's a feeling that's shared by a number of providers in the MidCentral area," he said.
Mr Matthews said there's problems with the way the new system has been implemented.
"Firstly there's still confusion about processes, roles and funding options available. Secondly, payments for services provided have been slow to be processed at times and thirdly there appears to be a backlog of referrals resulting in many people approaching us and other providers for help, even though we are not funded to do this," Mr Matthews said.
Dr Bennie said those frustrations showed funding was not matching demand.
He said the system was in crisis and needed another $574m a year to correct a decade of neglect and underfunding.
"We think it's high time the government delivered on its promise to put well-being at the heart of all its decision-making when it comes to disabled people and their families and those organisations that are providing support services. Our view is the sector is in a crisis at every point," he said.
The Ministry of Health acknowledged more people were accessing disability support than ever before and the cost pressures in the sector will continue.
It said it's looking at how to manage that pressure in the future.
The government intends to evaluate the Manawatū pilot at the end of next year.
