Up to 50,000 disabled New Zealanders and their carers have been "blind-sided" by sweeping changes, effective immediately, that they say drastically reduce their access to support.
New funding rules around the purchasing of services were uploaded to the Ministry of Disabled People's Whaikaha website on Monday with no consultation, according to angry members of the community.
"It's come as an absolute shock. We're already always having to advocate for our disabled children and adults, and to be hit out of the blue with that announcement, it's absolutely gut-wrenching," Christchurch mother Sam Whitworth said.
She has three children. Two of them, Ava aged 12 and Mason aged 10, are neuro-diverse and require constant care - Mason is tube-fed up to five times a day.
"They are not taking away funds but they are severely restricting what we can do with them."
Accommodation for support workers accompanying a disabled person on holiday, and even a few hours in a motel for burnt-out caregivers is now off the cards.
"Just to have a shower and just to have a sleep is all that we really want and that is meaningful to us we now can no longer do, it's not acceptable and it's not okay," Whitworth told Newshub.
Even the largest of the facilitators of self-directed funding for the disabilities sector, Manawanui, said it had no idea purchasing arrangements were changing.
Disability Issues Minister Penny Simmonds told reporters at Parliament on Tuesday her Ministry could've consulted better with the disability community.
"I will talk to Whaikaha about the way in which they consult and the way in which they make announcements."
She said funding for disability support services had "blown out" under the previous Government.
"What we are saying is prioritise the funding for people with disabilities. Some of the funding has been going to carers - that has to be pulled back and prioritised to the disabled person."
Access to funding for sensory toys or devices like tablets which aid the non-verbal is now restricted, and gym memberships and massages for those often required to carry someone heavier than their own body weight is gone.
But carer burnout is a real problem according to Porirua mother Michelle Sharp, who has a 14-year-old non-verbal son. She is urging Simmonds to rethink the changes which will also see mileage payments to support workers visiting disabled people wiped.
"This is a very small funding pool for an already marginalised group in society. This funding, and how it was able to be spent, was making a positive difference in the lives of the most vulnerable people in our society," Sharp said.
"It is great that you can still use the money to pay for a carer to come into your home and give you respite, but not being able to pay for transport and accommodation with funding will mean that many parents will never get a break."
Two petitions against the changes have been launched in the last 24 hours and have amassed more than 13,000 signatures.
Among those who are angry at the changes are 13-year-old Wellingtonian Eleanor, her sister Aoife and mum Amy Taylor, who are all autistic, with ADHD.
"Just how it was communicated was thoughtless and reckless," said Amy, who also has multiple sclerosis and relies on individualised funding for exercise classes which helps coordination and their ability to walk.
"A lot of this funding can literally save lives. If this decision sends people into mental and physical health crisis, then it's costing more money in the long run."
Amy's younger daughter Aoife has an extreme form of noise sensitivity to things like nail biting "or sometimes humming or on bad days someone breathing".
Until now the family has been able to access funding for a device in the 10-year-old's room to regulate her responses and distract. That will no longer be funded.
"We understand there are ways as a country we need to save money, but this is an underhanded way to do it."
The Minister described the changes as a response to a forecast of overspending on a budget that had a 10 percent increase for 2023/24. "This fund has blown out and they have to manage it within the fund that's there."
Simmonds said the changes were "temporary until later this year when Whaikaha will be working with the community on sustainable funding options for the future".
