Parents worried their children will suffer as disability services suddenly cut

Tuesday, 19 March 2024

• The Disability Ministry (Whaikaha) announced on Monday it is limiting what disabled people can buy with funding.

• Disabled carers will no longer be able to buy items to help them take a break in a move labelled “disheartening” by a mother of a child with autism.

• The ministry, which reduced wheelchair services earlier in the month, continues to struggle with increasing costs and demand.

Families with disabled children have been left shell shocked after the Government removed funding for respite care without any warning.

Disabilities Minister Penny Simmonds said funding was set to run out in “days”, although she first knew of funding issues back in December. She said the Government wasn’t going to increase funding to maintain support for disabled people and their families “because the Government’s coffers are not an endless open pit”.

But with services now cut, families are telling Stuff they are worried about how they will cope and if their children, and their relationships with their children, will suffer.

For Peter van Vroonhoven, who has a disabled son, he said this funding had been a godsend - allowing him to ensure his child was well cared for if he needed a break. But that funding was quietly cut on Monday, following no consultation with those who rely on it.

“It is just the most appalling decision,” van Vroonhoven said.

Whaikaha funding worked by giving families a two-year budget, an amount set by the ministry to help disabled people live full lives. Their whānau could spend that money on equipment, such as wheelchairs, or on allowing parents to take a break.

But Simmonds said she was justified in stopping money being spent on respite.

“The money is coming from the Ministry of Disabled People. It is money for people with disabilities, and they must always have first priority,” Simmonds said.

That decision has come as a blow to Charlotte Roose, a 31-year-old mother who looks after her four-year-old son, Lincoln, who has autism spectrum disorder and receives the carer support subsidy.

She said the changes will create more pressure for her family, potentially harming her relationship with her young son.

“Everyone kind of needs to just be able to take a break sometimes to be able to recharge and refill their cup and that's not going to be possible without access to these kinds of things,” Roose said.

Whaikaha did not contact Roose about the changes. Like many others Stuff has spoken to, she found out by chance thanks to Facebook chatter.

“It’s just really disappointing and disheartening that there was no kind of consultation or heads up,” Roose said.

“It’s supposed to be nothing about us, without us and I don't feel like the ministry has done that.”

The carer support subsidy covers some of the costs of care and support so that a disabled person’s primary carer can take a break.

“That could be like a bedroom camera so that I can keep an eye on him overnight without needing to get up and therefore get a better rest,” Roose said.

She has also used the subsidy to buy climbing equipment to create a safe space for Lincoln to exert his energy.

“My son's very active and doesn't really sit still. So any furniture he can jump about on, he absolutely will, which can be quite dangerous,” Roose said.

“Making sure that he has safe spaces to use those energies and things like that is really important. That's what our intended use of our career support subsidy is, to make sure he has those safe spaces for him.”

But the scope of support covered by the carer support subsidy has been reduced by the changes, with the purchase of items as a form of delivering respite now excluded.

This means Roose will have to hire someone to take care of Lincoln if she wants to take a break.

She said this would be difficult as Lincoln’s autism can make him anxious around new people and environments.

“He doesn't always understand those changes or why those changes need to happen, which means that I can't just leave him in a strange place with a strange person to give myself a break,” Roose said.

“That doesn't work for me or for Lincoln who is, you know, the most important person.”

Labour slams ‘blind side’

Labour disabilities spokesperson Priyanca Radhakrishnan said the Government’s communication had been confusing and acted to “blind side” families. She first heard about the change on Monday night, having received “dozens of emails from people who were upset and angry” after learning about the new rules on social meida.

“To make a decision like this on the fly, to announce and implement it on the same day with no consultation, is unfair. A number of people will have their accessibility plans worked out for an entire year - what is the implication for them?”

Labour leader Chris Hipkins said the disability community would “pay the price” of Government cuts.

“The most vulnerable New Zealanders are the ones who are going to pay the price for this Government's fiscal incompetence,” he said.

Funding ‘pause’ not ‘cut’

Simmonds rejected the accusation funding for families with disabilities was being cut as part of the Government’s cost savings ahead of the Budget. She called it “a temporary pause”.

“We need to pause and sort out what that criteria was. And so I think, really, there's been a swing too far from no flexibility to total flexibility,” she said.

She acknowledged Whaikaha could have handled the announcement better, when Stuff asked if she wanted to apologise for how this was handled.

“I'll talk to them about how we handle announcements,” she said.

“I apologise that they have a ministry that has been set up with policy settings that is putting Whaikaha in this situation.”

Simmonds did not say when the funding would be un-paused.

Whaikaha said demand for disability services was increasing year on year, as was the cost of delivering those services.

“To manage these demands and to ensure that disability funding is directed to those that need it the most, Whaikaha is having to make some difficult decisions,” the ministry said in a statement.

“We will work with our partners, disabled people, tāngata whaikaha Māori and whānau to develop long term settings and to retain as much flexibility as possible.”