Oliver, 7, and his mother Jessica Barnes. Oliver is autistic and non-verbal and the family relies on disability support funding for respite care. Many of their respite options have now be removed under sudden changes made by the ministry, Barnes said.
Oliver, 7, and his mother Jessica Barnes. Oliver is autistic and non-verbal and the family relies on disability support funding for respite care. Many of their respite options have now be removed under sudden changes made by the ministry, Barnes said.
Sudden changes to support for disabled people are not a funding cut, the ministry says. Advocates and families who rely on the funding disagree and say the changes put their children at risk.
Disabled people and their families are appalled by sudden restrictions on their funding, which they say amounts to a cut to their support services.
The Ministry of Disabled People yesterday announced new limits on what disabled people could purchase with their funding. It also said there would be changes to the way equipment such as wheelchairs and home modifications were prioritised.
The ministry commissions support services for around 50,000 people and funds equipment for around 100,000 people.
Families and advocates said they were “blindsided” by the ministry’s announcement, which came without warning and was effective immediately.
While the ministry said funding was not being reduced, advocates and the Opposition said the new limits were an effective cut because they prevented families from accessing care they needed.
Jessica Barnes, whose son is severely autistic, said the changes announced yesterday removed all of that flexibility and hugely limited their support options.
“It makes my blood boil and heartbreak all in one,” Barnes told the Herald.
Her son Oliver, 7, was non-verbal, struggled to regulate his emotions and could become aggressive and occasionally violent. He needed help with dressing, showering and eating.
The Tauranga-based family used the disability support funding for respite care.
Shortages and funding limits meant it was extremely difficult to find carers to come into their home, Barnes said.
So they used the funding to pay for swimming lessons, Riding for the Disabled, to purchase an iPad and to pay someone to look after him while they had a night away once or twice a year.
“The swimming lessons were like therapy for him,” Barnes said. “And it gave me a half-hour break once a week. But they will likely be declined now.”
Under the new policy, families seeking respite care are likely to be limited to hiring a carer. Accommodation, travel and food costs for carers have also been removed.
Chrissy Aspden, whose 7-year-old son is autistic, said funding for carers was capped at $80 per day, which made it near impossible to hire or retain someone.
She said that during the Covid-19 pandemic, when carers could not come into their home, she used the funding to purchase an iPad for her son.
“His behaviour is very hard, he is aggressive, he breaks a lot of things. So this would mean he could play by himself and we would take a break. We were also going to use it for Riding with the Disabled. Now all of that has been taken away without any notice.”
Aspden found out about the changes when they were posted on Facebook by the ministry. That Facebook page has been inundated by distressed families criticising the new rules.
Finance Minister Nicola Willis said overall funding for the Ministry of Disabled People was not being reduced. But Labour said that by strictly limiting what people could spend their money on, the ministry was effectively cutting services. Photo / Mark Mitchell
“They have been a little tricky,” said social policy researcher Jess Berenson-Shaw, who has two autistic children.
“If you can no longer spend the money on the only thing you can spend it on, your allocated funding now sits there until your year is up, then it gets reabsorbed and your funding for next year gets reduced.
“So they are technically not reducing the funding but you can see how they will reduce their spend significantly by changing the criteria.”
The ministry also said it would be prioritising equipment and modification services according to who needed them the most.
This could include wheelchairs, customised standing frames, customised seating systems, adjustable beds, communication devices and housing and motor vehicle modifications.
New Zealand Disability Support Network CEO Peter Reynolds said this meant somebody who had old or broken equipment may not be able to get it fixed or replaced.
“Some disabled people are going to have to put up with what they’ve got even though it may no longer appropriately meet their needs or could in fact pose risk,” Reynolds said.
Disability Issues Minister Penny Simmonds said support funding had been spent on frivolous items such as massages or pedicures for carers. Photo / Phil Smith
While the Enabling Good Lives approach gave significant freedoms to families to choose how their funding was spent, Reynolds said he was not aware of the scheme being abused by users.
He said it was inevitable that restrictions were going to be placed on the new model of disability support and some in the sector told him they were grateful to have clarification about what the limits were.
But Reynolds was concerned by the lack of consultation about how the changes were made, saying they “came from left field”. A group of CEOs from the disability sector which was established by the ministry for “free and frank advice” knew nothing about the new policy.
Pedicures and haircuts
Disability Issues Minister Penny Simmonds said funding for disability support services had “blown out” under the previous Government, shifting from no flexibility to “total flexibility”.
“What we are saying is prioritise the funding for people with disabilities,” she told reporters at Parliament this afternoon. “Some of the funding has been going to carers - that has to be pulled back and prioritised to the disabled person.”
Simmonds agreed that iPads and other items were useful purchases for children with autism.
“But we have got such broad criteria at the moment that the funding has also been used for massages, overseas travel, pedicures and haircuts for carers.”
She indicated that the funding decisions could be temporary while new funding criteria were established.
The minister also said she would speak to the ministry about how it announced important policy changes, after complaints from the sector about the surprise announcement yesterday.
Labour's disability issues spokeswoman Priyanca Radhakrishnan. Photo / Mark Mitchell
The Labour Party’s disability issues spokeswoman Priyanca Radhakrishnan said the changes were a “clear cut” to front-line services.
“They are disguising it as an area that is potentially overspent that they need to pull back on. They will say that there are no funding cuts per se because the quantum of funding is not reduced but by severely limiting what people can access - that is a cut,” Radhakrishnan said.
Isaac Davison is an Auckland-based reporter who covers health issues. He joined the Herald in 2008 and has previously covered the environment, politics, and social issues.
