Disability advocates to protest funding changes

Thursday, 28 March 2024

• The Ministry of Disabled People made an out-of-the-blue and confusing announcement about funding changes last week.

• While the ministry reiterates that people with disabilities will not be without support, some people are already experiencing a loss of independence.

• A group of Southlanders will be protesting outside the Disability Issues Minister’s office this week.

It has been a long, stressful, “nightmare” few days for Tracy Peters.

She woke up to a Google alert last Monday morning saying that Whaikaha, the Ministry of Disabled People, was pausing individualised funding while it made changes to its purchasing rules and equipment modifications services.

“I though it was a scam,” the Southlander with paraplegia said.

For both her and her husband, who has Asperger’s syndrome, it meant they could not access the support that allowed them to live independently.

Peters, alongside Southland’s disability community, planned to protest the changes outside Minister for Disability Issues Penny Simmonds’ office on Thursday.

She was encouraging people around the country to do the same.

The ministry made the announcement in a Facebook post.

Whaikaha chief executive Paula Tesoriero also took to Facebook over the weekend to apologise for the way the ministry communicated the changes.

“I want to acknowledge that the rules…took you by surprise. We know that the way we went about announcing these changes caused stress and anxiety, and for that I am sorry.”

Tesoriero said last week rules about what the ministry would pay for were relaxed during the Covid-19 pandemic but needed to be reconsidered.

As costs increased and more people were using the service, the ministry had ended up $65 million in the red, she told RNZ’s Nine to Noon on Wednesday.

In her apology, Tesoriero said lessons had been learned and would information how the ministry worked in future.

People would not lose their carer support, she said, and the ministry would be considering broader policy settings in consultation with the community.

Peters said she could understand that the ministry needed to tighten its belt, but she asked how it had been allowed to fall so far into debt and why the announcement was made without consulting the community who would be directly affected.

“If they didn’t have the money to grant my budget, why did they?”

For Peters, being unable to provide her support carer with personal protective equipment and travel payments meant her contract was void until the situation was clear, she said.

Because she could no longer access payments for ride services, she was relying on her electric wheelchair which was in itself risky, because of rain and its worn tyres that needed replacing.

Peters used individualised funding because she did not qualify for ACC payments.

She went through regular “gruelling, terrifying” assessments to set a budget, and every time she needed to use that budget, she had to submit a claim explaining why it was needed.

“It’s exhausting. It’s scary, and if I don’t dot the Is and cross the Ts, it’s delayed.”

The assessors were strict, Peters said, and there had been times, such as when her husband needed noise-cancelling headphones, where the couple had had to contribute.

“The sacrifice is always groceries.”

Peters hit back at Simmonds’ comments that carers had been taking advantage of this funding to pay for their own massages, overseas travel, pedicures and haircuts.

There had been instances when she had claimed for massages for her carer, she said, but it was because it was suggested by a physiotherapist to help with the heavy lifting her carer was doing.

And if she was down at the hospital, she wasn’t going to hesitate to buy her carer a coffee given she would be stuck helping her all day, Peters said.

It was important to understand, she added, that cuts like this affected more than just the disability community.

Suppliers and service providers would lose income, and important staff would need to be off work to support their family members with disabilities.

“The entire country will be impacted adversely,” she said.

But beyond the financial implications, there was a loss of dignity when arbitrary decisions were made on someone’s behalf, Peters said.

“We have fought for our rights. They weren’t given to us. Every person in this country with a disability has had to fight for their right to exist.”

Peters wanted the ministry to consult with the community about any funding changes.

In a statement, Simmonds said no disabled person would lose access to funding for essential services, equipment or support.

“The changes that the Ministry for Disabled People, Whaikaha, is making are simply about ensuring the funding allocated to disabled people is actually being used for that purpose,” the minister said.

“I appreciate that the consultation was not as wide as it should have been before implementing the changes. We are improving processes around communication.”

A spokesperson for Simmonds said on Friday that she would have nothing more to add.

Disabled United would conduct a peaceful protest outside Simmonds’ office on Kelvin St, Invercargill, from 10am on Thursday.

Simmonds’ spokesperson said she would not be in Invercargill that day.

Protesters will also gather at the Bridge of Remembrance in Christchurch from 11am and at Meridian Mall in Dunedin.