Disability campaigners presenting a petition calling for better accessibility in 2021. Photo: RNZ / Dom Thomas
Disability groups say the lack of consultation over changes to respite and equipment funding was appalling, and the changes themselves have left carers horrified.
Whaikaha, the Ministry for Disabled People, unveiled changes on Monday to purchasing rules for disabled people's equipment and support services, with immediate effect.
The changes have caused anguish within the disabled community, with a petition opposing them attracting more than 10,000 signatures in 24 hours.
It included restrictions to the funding of purchases that "would be considered something that every citizen has to pay for" - and while the government has argued the total amount of funding was not being reduced, Labour says it is in effect a cut.
'A scary time' - Autism NZ
Autism New Zealand chief executive Dane Dougan said it was "appalling" there was no consultation with the wider disabled community.
"The last two or three days our inboxes have been flooded with people wondering what to do next so it's a scary time for them."
He said people in the autistic community needed time to absorb the impact of significant changes and do some planning for what they would spend their funding on but that had been taken away from them by the way the changes were announced.
He was concerned funding would cease for noise-cancelling headphones which were essential for many people with autism, who depended on them to prevent sensory overload and be able to function in a social situation, he said.
Another item that might be axed was iPads which were helpful in their learning among other uses.
"It seems very short-sighted to not be able to fund that ... it's a massive impact on that child and the family."
Disability Issues Minister Penny Simmonds told Morning Report on Wednesday the government had done an inadequate job in communicating the changes.
She told the programme funding should not be cut for noise-cancelling headphones and iPads.
However, she had told reporters the previous day the money to pay for iPads for children with autism had been cut.
"Well, in the meantime it is, until we work out how it is going to be set up," she said.
"So, I absolutely agree - the use of an iPad as a very good tool for someone with autism, but we've got such broad criteria at the moment that the funding has also been used for massages, overseas travel, pedicures, haircuts for carers."
Disability Issues Minister Penny Simmonds Photo: Phil Smith
She had argued the change in approach "doesn't make it inaccessible for the community", saying it was a return to what the rules had been before Covid-19.
"That is what the rules were pre-Covid, there wasn't any flexibility at all. And so what it is doing is putting in priorities for how the funding will be used, so they don't breach the funding envelope.
"There are 45,000 people that receive disability support. Around 35,000 of those have the individualised flexible funding - now, pre 2019, there was no such thing, there was no flexible funding."
But it was not a permanent setting, she said.
"There's been a swing too far from no flexibility to total flexibility. Now we have to find a recalibrate and find some middle ground about what is reasonable."
Dougan acknowledged the ministry had been under pressure with its budget - and while he expected some review of costs, he said those working in the sector were best placed to advise on how to save money.
"I accept that it's pretty tough out there but let's work through this together and as a community, come up with a solution that's not going to negatively affect an entire population of people."
'Robbing the vulnerable to give to the rich' - mother and full-time carer
Emily* provides full-time care to her daughter, who is in her 20s but needs the care and attention that a nine-year-old would.
She spotted the changes in a social media post by Whaikaha.
"I was horrified, because I speak to a lot of parents who are caring for disabled children, disabled adults and they're really suffering. These are really really vulnerable families. What the changes mean in effect is that carers like myself cannot take quality respite - and that's not good for the disabled person and it's not good for the carers.
Anneke Smith reports on the disability funding changes
"It looks like what we're doing is a reverse Robin Hood - you know, we're robbing the vulnerable to give to the rich. And unless you've been a 24/7 carer you have no idea how stressful it is and what's involved. Already we don't have enough support and people are trying to find support in any way that they can and you're removing this from them."
She was told financial support would no longer be available for the travel or accommodation that gives her a break from looking after her daughter, and funding will no longer be available for her daughter to participate in activities in the community.
"I can't leave the house. I can't leave her at home alone. She can't take public transport on her own ... it's full on.
"If my daughter wants to participate in activities or anything else she [now] needs to pay for this out of her benefit. My daughter's benefit doesn't even cover her rent."
Emily told RNZ the cost of having care provided in the home - to give Emily a break - was twice what it cost to have her other daughter take her into the community.
"I was told that what I should have done was to actually have her cared for at home, even though it was twice the cost and she would have missed out on the travel experience."
'There is a heightened risk' - Disability Support Network
Disability Support Network chief executive Peter Reynolds said they - like others - received the announcement out of the blue.
"To the best of our knowledge there was no consultation," he told RNZ. "Attempts to try and understand the intricacies of the announcement are still outstanding - we haven't really been able to really get in touch with people to the extent that we would like."
He said they had been very concerned Whaikaha had been underfunded from day one, so it was not surprising steps were having to be taken to curb spending - but it should not mean removing the key supports disabled people and their carers needed.
"What we don't want to see is disabled people suddenly finding that support they're dependent on being disrupted. What we don't want to see is support workers being overstressed, overworked, or indeed those without the qualifications and skills required to do the job being used because things like respite services are just not available."
He said that possibility was a concern under the Health and Safety at Work Act.
"If somebody who isn't qualified to do the job ends up having to provide support because that's all the disabled person can afford under their individualised funding package, then there is a heightened risk that something could happen - either the disabled person could end up being injured or the care worker could end up being injured."
It was also a concern that Simmonds was not a minister in Cabinet, and therefore unable to influence her colleagues to the extent he felt she should.
"I mean, she's representing a constituency of over 25 percent of the population, so that voice is also a voice of voters and it needs to be taken account of."
* Not her real name.