Carers want out from disability ministry over funding fiasco
After controversial policy changes that saw carers stripped of their ability to purchase respite supports, a group has asked the Government for their allocations to be paid out as personal budgets
by Emma Hatton
NewsHub: 16/04/2024
Carers NZ chief executive Laurie Hillsgen said paying Carer Support as a budget would save the Government administration costs, and allow it to rebuild morale that had been crushed by recent changes to purchasing rules. Photo: Getty
A national network for carers has written to Disability Issues Minister Penny Simmonds asking that disability support funding be paid straight into bank accounts, rather than operating as a reimbursement pay-as-you-go system.
Carers NZ, which represents carers across the country, said changes to the Carer Support scheme would be an “immediate win” for both carers and the Government.
Chief executive Laurie Hillsgen said it would save the Government money in administration and resourcing costs, and allow it to rebuild morale that had been crushed by recent changes to purchasing rules.
“It just makes sense. Carer Support is the only state-funded help most family carers get and it’s to purchase wellbeing breaks for them and wellbeing is the lowest we’ve ever seen for carers in 25 years. We’ve had Covid, we’ve had extreme weather events – they need breaks, they’re not robots,” Hillsgen said.
She said most Carer Support payments were no more than $4000 a year, which was only a fraction of the unpaid labour carers were undertaking.
“Their economic value is $17.6 billion a year according to Infometrics and you want them to keep going, don’t you? So that’s pretty good value. A piddly few thousand dollars a year … that minor investment in the wellbeing of a family carer makes total economic sense.”
Hillsgen said the backlash following the changes to purchasing guidelines by Whaikaha Ministry of Disabled People showed New Zealanders were comfortable with carers using their respite allowance as they needed.
“What kind of a society are we if we do not want family carers to stay well, to help them have a bit of respite? I don’t think any New Zealander would begrudge a family carer a massage.”
Carer Support is available to those looking after someone with a disability, mental illness, or an older person. The funding for disability is managed by Whaikaha and the other two streams are managed by the Ministry of Health.
Exactly how many carers receive the funding is unclear.
In recent parliamentary written questions, 26,158 people had an active Carer Support allocation from Whaikaha and 26,251 clients were confirmed as eligible for Health New Zealand-funded support. However, the response confirmed not all eligible clients accessed that support.
“Health New Zealand does not have a count of the number of carers currently receiving carer support payments,” Health Minister Shane Reti replied.
It was only Whaikaha’s purchasing guidelines that were changed to become stricter. The rules for those aligned with the Ministry of Health have not changed, but are not as flexible as what Whaikaha’s were before the changes.
Hillsgen said Whaikaha clients most urgently needed to move to a personal budgets model, but ideally all clients would have the same flexibility.
Currently carers need to submit a receipt to be reimbursed, or provide quotes for a purchase in order to receive their funding, with the final amount decided by a needs assessment.
If Carer Support was treated as a personal budget it would save a lot of administration at both ends of the transaction, and given the relatively small allocations, such high compliance measures were not necessary, Hillsgen said.
Inge Struwig is the full-time carer of her 11-year-old daughter who has level three autism and ADHD.
“I’ve been dealing with it for a long time. I have suffered burnout and I had two mental breakdowns in the last 18 months. I was running a business and I was trying to look after my daughter who was having school refusal, and all of that sort of stuff,” Struwig said.
“Eventually, the schools recognised that school was probably not the right environment for her despite the fact we tried really hard and so she’s on Te Kura [correspondence school] so I am her teacher. I’ve had to give up my business and I have to look after her, because of her violence when she gets terribly overwhelmed, so I had to keep other people safe and I had to become her full-time carer.”
Unable to work, Struwig is on Sole Parent Support, but attempting to get onto the Supported Living Payment. She’s also trying to get Individualised Funding for her daughter.
She’s paid barely enough to get by, and her Carer Support allocation was used to try and obtain some semblance of respite.
The most recent purchase she made was a trampoline for her daughter to expend some energy – a purchase that would no longer be allowed under the changes.
Struwig said having Carer Support as a budget, and the restored flexibility that would bring, would make life much easier and allow her to decide the best way to achieve respite.
“For example she’s of an age where she should be able to make herself something to eat, but she’s not, she’d rather go hungry, and then if you say to her, ‘It’s lunchtime, you need to go and eat something’, the demand and stress of that – it’s even worse.
“So one of the things I was thinking was buying something like a Thermomix where it would be safe for her to cook a meal, because it would be interesting and it would stimulate her and it wouldn’t be that much of a demand and it would be easy to clean and things like that.”
Hillsgen said Carers NZ had also asked Simmonds for carers to be covered and represented under the Ministry of Social Development, saying their unique position was not well understood within the Ministry of Health or Whaikaha.
“We just don’t feel we’re getting anywhere for carers and what is the missing piece? It’s recognition. With recognition comes resources, attention, focus and that is why we are seeking a home in government for carers in their own right.
“Because of course in health and disability, they are always going to focus on their priority populations, so sick people and patients, and for Whaikaha, the focus is on individual disabled people.”
Whaikaha had proved they were not there to represent carers, she said.
“They are there for individual disabled people and they have thrown family carers under the bus. They obviously consciously did that, because presumably the policy they recommended to the minister was to save money by restricting how carers could use their little pittance of respite.”
Carers are currently collecting signatures for a petition, calling for a minister or commissioner for carers.
Struwig said as long as someone was working in the interests of carers, it did not matter which agency it was, although Whaikaha appeared to have “no idea what’s happening on the ground”.
Since the purchasing guidelines were changed without consultation, the ministry was no longer able to make its own decisions around its funding criteria, with any changes needing to go before Cabinet before being enacted.
Cabinet has since ordered a review to probe Whaikaha’s financial management and processes, and to address the broader policy settings for disability support services.
Simmonds said she was seeking advice from officials on the proposals put forward by Carers NZ.
Last Updated 16/04/2024
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