20 Mar 2024

Disability funding changes: 'We just want to be parents'

10:20 pm on 20 March 2024
Donna Clarke (support worker), Ella and mother Loraine Wiersma

Photo: RNZ / Nate McKinnon

A Christchurch mother is furious after the Disability Issues Minister accused families of rorting the system when explaining changes to disabled peoples' funding.

Families are digesting the sudden announcement earlier this week by the Ministry of Disabled People's that funding was changing, including purchasing rules for disabled people's equipment, respite care and out of town accommodation.

Minister for Disability Issues Penny Simmonds said it is not a reduction in funding, but an overhaul of "how the current funding can be used to ensure maximum benefit for the disabled person".

The minister said the changes were independent of the government's public service cutbacks.

"The Ministry is restoring some but not all restrictions on what this funding can be spent on - for example equipment or services for disabled people rather than overseas travel or haircuts for their carers."

Ministry chief executive Paula Tesoriero said the relaxation in the flexibility rules that had applied since the pandemic had now been "paused".

But Lorraine Wiersma said restrictions to funding would put more pressure on caregivers who were already carrying a massive load, some who had "nothing left in the tank".

She has employed a daily full-time carer for 20 years to support her 26-year-old daughter Ella, who has cerebal palsy, courtesy of respite funding.

It has enabled her to provide more support to her 13-year-old disabled foster child and her 67-year-old sister, who has an intellectual disability.

She said disabled children were already disadvantaged in both the education and health system, heaping additional burdens onto parents.

"We have to become nurses and doctors and teachers, all these jobs that professionals are paid to do, and that we're not qualified to do," she said.

"We just want to be parents."

Donna Clarke (support worker), Ella and mother Loraine Wiersma

Photo: RNZ / Nate McKinnon

The Minister taking aim at families who were allegedly exploiting the flexible funding mechanism had left the mother "enraged".

"This funding hasn't been open slather," she said.

"I want to know how many people got their hair done and their nails done.

"She knows nothing about us.

"People can't walk in our shoes until they've had a conversation with us.

"See what our families do, we run businesses around our children, we do plans, we don't put in this invoice and we get all this cash."

She said the "funding lolly scramble" of various government sectors had left them feeling like "beggers looking for a scrap of food".

"[The Minister] is blaming our group for having this overspend, but someone hasn't run this organisation properly.

"It's like opening up the cupboard and saying 'sh*t I have no groceries'.

"The pantry was becoming bare and we have to pay for that."

There were fears funding cuts to respite services would lead to greater isolation for families, Wiersma said.

The government has come in for critisicm of how it has handled communication of the changes, after a Facebook post went live on Monday, with the opposition describing it as a "blind side".

Simmonds said the Ministry had done an inadequate job in conveying in the changes.

More than 16,000 people have signed a petition against the funding changes.

Kaihautū Tika Hauātanga Disability Rights Commissioner Prudence Walker told Nine to Noon on Wednesday she was "concerned about the the detail of the announcement but about the impact on disabled people's trust in the system".

IHC director of advocacy Tania Thomas said the government was making decisions about benefits "on the fly and not on evidence", which was putting intellectually disabled New Zealanders at serious risk.

Cerebal Palsy Society of New Zealand chairman Daniel Clay described the changes as "draconian and ill conceived".

"They will leave big gaps in what people should be able to use their funding for," he said.

"They will hinder New Zealand's disabled community's ability to live good and independent lives."

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