Seven-year-old Oliver with his mother, Jessica Barnes. Oliver is autistic and non-verbal, and the family relies on the Disability Support Fund for respite care. Barnes said the ministry’s sudden changes have removed many of their respite options.
The ministry says the sudden changes to disability support are not a funding cut – but advocates and families who rely on the support disagree, saying the changes put children at risk.
Disabled people and their families have been stunned by the sudden funding restrictions, which they say amount to cuts to support services.
The Ministry for Disabled People yesterday announced new limits on the items that disabled people can buy with ministry funds, and said there would also be changes to how equipment such as wheelchairs and home modifications are prioritised.
The ministry has commissioned support services for about 50,000 people and provided capital funding for about 100,000 people.
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Family members and supporters said they were “caught off guard” by the ministry’s announcement, which took effect immediately and without any warning.
The ministry said no budget cuts were being made, but advocacy groups and opposition parties said the new budget restrictions were effectively cuts that would prevent families from getting the care they need.
“Heartbreak”
An approach called “Enabling Good Lives” is giving disabled people more choice and control over how their disability funding is spent.
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Jessica Barnes, whose son has severe autism, said the changes announced yesterday took away all that flexibility and severely limited her support options.
“It makes my blood boil and my heart hurt,” Barnes told the Herald.
Her seven-year-old son, Oliver, was non-verbal, had trouble regulating his emotions, and could become aggressive and sometimes violent. He needed help dressing, showering and eating.
The family, who live in Tauranga, used disability funding for respite care.
Burns said it had been extremely difficult to find caregivers to visit the home because of staffing shortages and funding restrictions.
So they used the money to pay for swimming lessons, horseback riding for the disabled, buy an iPad and pay someone to watch their son while they went out for a night or two a year.
“Swim lessons were like therapy for him,” Barnes said, “and I could get a 30-minute break once a week, which he’ll probably decline now.”
Under the new policy, families seeking respite care will likely only be able to hire a caregiver, whose accommodation, travel and food costs will also be waived.
Chrissie Aspden, who has a seven-year-old son with autism, said caregiver funding is limited to $80 a day, making it nearly impossible to hire and retain caregivers.
She said she used the funds to buy an iPad for her son because the COVID-19 pandemic meant caregivers couldn’t enter their home.
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“He has a very rough and aggressive attitude and breaks things, so this scheme means he can play on his own and we can have a break. We were also planning to use it for disabled riding, but now all of that has been taken away without warning.”
Ms Aspden learned of the change when the ministry posted it on Facebook, where the page has been inundated with posts from confused families criticising the new rules.
Finance Minister Nicola Willis said the Department for Disability’s overall budget would not be cut, but Labor said the department was effectively cutting services by severely restricting what people could spend their money on. Photo / Mark Mitchell
Funding cuts?
A statement on the ministry’s website said it was not cutting funding, but simply clarifying what people with disabilities can purchase.
“They were a bit tricky to deal with,” says Jess Berenson Shaw, a social policy researcher who has two children with autism.
“If we are no longer able to spend money on the only thing we can spend it on, the allocated funds will remain until the end of the fiscal year and then be reabsorbed and the next fiscal year’s funding will be reduced.
“So, while we’re not technically cutting funding, we can see how changing the criteria can make a significant reduction in spending.”
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The ministry also said it would prioritise equipment and upgrade services according to who needs them most.
This includes wheelchairs, customized standing frames, customized seating systems, adjustable beds, communication devices, home and automotive modifications, and more.
New Zealand Disability Support Network CEO Peter Reynolds said this meant people with old or broken equipment might not be able to get it repaired or replaced.
“Some people with disabilities will have to make do with what they have, even if it no longer adequately meets their needs or may pose real risks,” Reynolds said.
Disability Affairs Minister Penny Symonds said the support money was being used for frivolous things like massages and pedicures for carers. Photo / Phil Smith
While the Enabling Good Lives initiative gives families a lot of freedom to choose how to spend the funds, Reynolds said he wasn’t aware of users exploiting the system.
He said it was inevitable that there would be limitations on any new model of disability support, and some in the industry would appreciate it being made clear what those limitations would be.
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But Mr Reynolds expressed concern about the lack of consultation about how the changes were made and said they were “unexpected”. A group of disability CEOs set up by the department for “free and frank advice” had no knowledge of the new policy.
Pedicure and haircut
Disability Affairs Minister Penny Symonds said funding for disability services had “exploded” under the previous government, going from no flexibility to “total flexibility”.
“What we’re saying is, prioritise funding for people with disabilities,” she told reporters in Parliament this afternoon. “Some of the funding goes to carers. We need to cut that and prioritise people with disabilities.”
Simmons agreed that iPads and other items are helpful purchases for children with autism.
“But at the moment the criteria are so broad that funds are also being used for massages, international trips, pedicures and haircuts for carers.”
She suggested the funding decision could be temporary until new funding criteria are established.
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The Minister also said he would consult with the Ministry on how to announce the significant policy change following complaints from the industry about yesterday’s sudden announcement.
Priyanka Radhakrishnan, Labour Party spokesperson for disability issues. Photo by Mark Mitchell
Labour’s disability issues spokesman Priyanka Radhakrishnan said the changes were “clear cuts” to frontline services.
“The government is tucking it in as an area where they may have budget surpluses and need to cut. They will say there are no cuts as such because the amount of the budget has not gone down, but severely restricting what people can access, that is a cut,” Radhakrishnan said.
Isaac Davison is an Auckland-based health reporter who joined the Herald in 2008 and has covered environment, politics and social issues.