Exhausted carer fears amid changes to disability funding
By: Ke-Xin Li
Waikato Times: May 28, 2024
Helena Tuteao, pictured with dog Roxy, relies on others to drive her, especially for work with My Life My Voice. She’s now unsure if she can pay her carer to do that.
MARK TAYLOR / WAIKATO TIMES
Tighter rules around disability funding will leave people struggling for transport and time out, a Waikato group heard.
Many in the disability community found out through Facebook about changes to what respite funding can be spent on and were angered by suggestions from then Minister for Disability Issues Penny Simmonds that some wasted it on “massages, overseas travel, and pedicures”.
It was a “traumatic, confusing, and stressful” March 18 announcement from Whaikaha, the Ministry of Disabled People, according to Helena Tuteao, who is on the Waikato Leadership Group of Enabling Good Lives (EGL).
The EGL approach includes “trusting disabled people and families to flexibly manage their lives and funds”.
Tuteao isn’t reassured by moves the Government has made since the announcement, such as clarifying the changes, removing Simmonds from the disability portfolio, and appointing a panel to review ministry-administered support services.
None of the panellists have a known disability and a findings report is planned before consultation, she said.
People shared their frustration, confusion and concerns about exhausted carers at a recent meeting of about 30 disabled people and carers in Hamilton. Their thoughts will be sent, in anonymised form, to decision-makers, Tuteao said.
A mother who spoke at the meeting said EGL gave her some independence back - and her name, instead of always being her daughter’s mother.
Twice a week, a carer would look after her daughter and the mother would use respite time to work.
“That’s my place where I get to be an adult.”
She could associate with others and do “a range of different things.”
The mother also paid for a monthly massage for her daughter’s carer a using the funding.
“[My daughter] has very complex needs and loves her [carer], but the carer’s in her sixties, we are all falling apart.
“I think caring for the carers is something that has been completely missed out with these changes.”
Helena Tuteao said Enabling Good Lives (EGL) gave her independence. She is now on the Waikato Leadership Group.
MARK TAYLOR / WAIKATO TIMES
For Tuteao, transport is a big concern. She was diagnosed with glaucoma as a child and is now completely blind.
She relies on others to drive her, especially for work with My Life My Voice, which requires her to travel to Auckland and other cities.
Under the new rules, she’s not sure if she can still pay her carer to drive her.
When she had a partner, she also saw unpaid responsibilities placed on them: “Effectively they turned my partner into a bit of a disability support, which of course, changed the dynamics of the relationship as well”.
Disability lawyer Nan Jensen said it’s unfortunate that the government is treating disabled people like they can’t organise their own finances.
It would be difficult for her clients to challenge purchasing rules, she said.
Nan Jensen and Linda Terry at the Hamilton meeting to discuss future steps to make the group’s voices heard.
KE-XIN LI / WAIKATO TIMES
She and others recalled the case of Janine Albury-Thomson, who killed her daughter in 1997, saying she was exhausted after being unable to get respite care.
That prompted changes to respite funding.
And the inappropriate spending comments made by then-minister Penny Simmonds were disrespectful and untrue, Jensen said.
She didn’t see how anyone could be spending wastefully given she was once followed up after refunding herself when she’d accidentally paid her son’s carer from her personal bank account.
Family representative on the Enabling Good Lives (EGL) leadership group Linda Terry said the announcement “diminished that trust that we have built up” in one fell swoop.
-Waikato Times