Grace Archer and her mother Kelly O'Connell are worried about the effect of disability funding changes. Photo: RNZ / Jimmy Ellingham
A Palmerston North woman who fell ill in the Cook Islands four years ago is worried the progress she's made in her recovery will stall due to changes in disability funding.
Grace Archer suffered a rare brain stem infection that led to a series of other complications that nearly killed her.
After intensive therapy, the former primary school teacher's speech and movement are improving.
But that progress could be undone because of uncertainty about her access to speech therapy, physiotherapy and psychology sessions.
The Ministry of Social Development says her funding has not been cut, but changes to rules this year about how disability funding can be spent have standardised it throughout New Zealand.
Budgets allocated to families now can not be spent on privately provided therapy available in the public sector - although there are concerns about the availability of public sector services and access to them.
Archer told Checkpoint her message is clear. "I just want to be able to do normal things in the community and not stand out."
The 32-year-old, who uses a wheelchair, now lives with her mother Kelly O'Connell in Palmerston North, moving from Waikato about a year ago.
In 2020 Archer had a rare brain stem infection that led to an abscess when she was teaching in Rarotonga. She was flown to hospital in Auckland.
"She was in a coma for a long time. She had locked-in syndrome. She was not expected to live and we were not given very much hope," O'Connell said.
Archer was recently told she could not spend her budget on private physio, speech therapy and psychology and she is not yet sure what she can access publicly.
"The budget got changed without warning and so many people have been affected," O'Connell said.
"Over the last few weeks we've been really anxious about the therapies Grace can access so she can be the person that she actually can be."
Archer has come a long way from four years ago, when she had to blink at letters on an alphabet board to communicate.
But her doctor has said there is little chance of her getting the therapy she needs in the public system in Palmerston North.
And after building a relationship with a psychologist, who she has been able to speak with online, she is worried about that too.
"For me to get a new one would be very harmful for my mental health," Archer said. "We've done a lot of processing around what happened to me."
For now Archer is putting together a funding proposal, which will be decided by a review panel because it is over a $105,000 annual threshold.
Ministry associate deputy chief executive for disability support services Anne Shaw said Archer's disability support was transferred to the Mana Whaikaha provider in Palmerston North in July.
Since then it had provided three rounds of temporary funding to keep her services at the same level as in Hamilton while a proposal was developed.
The ministry did not answer a question about how affected people are transitioned through the funding changes.
The uncertainty has left one of Archer's goals hanging in the balance if her progress stalls.
"One thing I hope to do is go into classrooms and teach children about inclusiveness."
O'Connell said what happened to her daughter was not her fault and she had the same rights as anybody else to live a full life.
Health NZ MidCentral group director for operations Sarah Fenwick said people, such as Archer, requiring services could be referred to it by their GP or hospital specialists.
"These referrals are clinically triaged so that those with the greatest need can access the services available," she said.
"By triaging, we are able to manage demand and provide some certainty to people about whether they are likely to be able to access public services. This does mean, however, that not every person who is referred will get access to these services."
Fenwick said Archer was a physiotherapy outpatient at Palmerston North Hospital, and it had not received any other referrals for her.
Health NZ did not answer a question about how it planned to accommodate people affected by disability funding changes and the demand that created.
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