Donna Haurua with daughter Josie Haurua. Donna is her daughter's full-time carer but was denied the carer's benefit. Photo / Doug Sherring
Donna Haurua with daughter Josie Haurua. Donna is her daughter's full-time carer but was denied the carer's benefit. Photo / Doug Sherring
An Auckland mother who has cared for her severely disabled daughter for 35 years was denied financial support, despite having been given it several times in the past.
The decision led the mother to fear she'd have to put her daughter into residential care.
Donna Haurua applied for the Caringfor Sick or Infirm Benefit on June 28, to aid in the care of her adult daughter Josie Haurua at their home in Glenfield.
Josie has spina bifida - a congenital spinal defect which causes paralysis of her lower limbs, intellectual disabilities and epilepsy. She is visually impaired.
The 35-year-old relies on a wheelchair to get around, and 24-hour care for everything from meal preparation and feeding; showering, dressing and grooming; restroom needs; and nightly re-positioning.
"And our situation hasn't changed. The only time I've gone off the benefit is when I've had a job that is about 10 hours a week - so I can earn an income and still manage Josie," she said.
"But I knew the job I had recently would be my last because of my age and the level of care Josie needs as she gets older.
"I've been one of the families fighting for assistance for family carers for over 30 years.
"Finally Jacinda Ardern announces she will pay us more – but here I am stuck in the middle of this. It doesn't seem right," she said.
Josie Haurua, 35, has spina bifida - a congenital spinal defect which causes paralysis of the lower limbs, intellectual disabilities, epilepsy, and is visually impaired. Photo / Doug Sherring
Since the decision, Haurua's had to turn to Work and Income for money to pay rent and food grants.
"Without the benefit I have no financial way of caring for her and paying rent. I have no phone, internet, or petrol, and I can't buy food after this week," Haurua said.
"The outset of all this means Josie will be forced into residential care which is not what she wants, and it's not what I promised her when she was born.
"I've given up my entire life and marriage to care for her at home, but if I can't keep a roof over my head, then of course I can't keep a roof over hers."
The Ministry of Social Development (MSD) has since backed down - after being contacted by the Herald - and apologised to the family for their mistake.
Its initial correspondence said the decision was made "using all the documents provided including the report from Taikura Trust" and the help was denied because Haurua "did not meet the criteria for this benefit".
Taikura Trust provides needs assessment and service co-ordination (NASC) services for disability support services funded by the Ministry of Health.
Trust chief executive Sonia Hawea told the Herald: "Needs assessment services like ours are not intended to be used to determine eligibility for support through other agencies like Work and Income".
"I checked that Work and Income were aware of this concern so this can be resolved for Donna and Josie," she said.
The MSD then launched an internal review.
In correspondence to Haurua today, regional commissioner for social development Mark Goldsmith said: "My health and disability team have successfully completed an internal review today and have approved your application for supported living payment [SLP] (caring for).
"We will be informing our Glenfield service centre to grant your benefit with immediate effect and backdate it to the date of application.
"I have also asked them to touch base with you to see how best we can support you further."
Goldsmith also apologised to Haurua and said he "deeply regretted" her experience.
"On behalf of our Auckland team, I would like to sincerely apologise to you for the inconvenience you and your family have experienced in dealing with us."
Goldsmith told the Herald the case was "a particularly complex one".
"The NASC Assessment presented information which indicated that, in ordinary circumstances, Donna would not have met the criteria for SLP. However, given the complexity and specific nature of her case, we reviewed the initial decision and overturned it," he said.
"While Donna has a range of support in place for her daughter, she is still the full-time carer for her. The principal disability adviser reviewed the case and advised that Donna's situation merited 'SLP caring for' (someone else) eligibility."
On receiving the news, Haurua said she was relieved but also angry at the lengths she had had to go to.
"I'm relieved as the pressure over the last few weeks has been immense. The impending placement of my daughter going into residential care against her will was a huge stressor for me," she said.
"Whilst I'm relieved, I'm also very angry at the lengths I've had to go to in order to be given an entitlement that was mine all along.
"I want a full explanation of what happened with my application process, and I have the right to have that explained to me," she said.
Goldsmith encouraged future clients who were unhappy with decisions to apply for a review.
"Any client can ask us to review a decision we have made that they don't agree with. We have a review of decision process that means clients can ask for a review within three months of the decision being made," he said.
