Peter Humphreys (left) with his daughter Sian, and Christine Fleming (right) with her son Justin Coote. Photo: NZ Herald / Sylvie Whinray
A mother who cares for her severely disabled adult son is "bitterly disappointed, but not surprised" by a court's refusal to acknowledge the work she does.
The Court of Appeal has released its much-anticipated decision relating to family carers, overturning earlier rulings that a mother who cares for her severely disabled adult child is deemed to be a "homeworker".
It was the fourth time the Court of Appeal had considered the issue of funding of family carers for disabled people.
The decision meant Christine Fleming, who cares for her high-needs son Justin who has physical and intellectual disabilities, was not entitled to the benefits of an employment relationship as other workers in care homes.
Because of this, the court found there was no need to determine backpay or compensation the Auckland woman felt entitled to.
Before 2013 it was the Crown's policy not to fund the care of disabled adults by family members.
In 2013, Funded Family Care (FFC) was introduced, requiring the disabled person to employ a family carer - even if they lacked the mental capacity to be an employer. In 2020, FFC was replaced by Individualised Funding (IF), a fortnightly allowance that allowed a disabled person - or their appointed agent - to employ their own carers.
Fleming and another parent, Peter Humphreys, argued their children lacked the capacity to enter such an employment agreement and they were instead homeworkers - a person who was by law 'engaged, employed or contracted" by another person to do work for them in a dwelling.
They argued as homeworkers, they were therefore employees of the Ministry of Health.
The Employment Court agreed that Fleming and Humphreys were both homeworkers and therefore employees of the ministry and made declarations to that effect.
In addition, Fleming advanced a personal grievance claim at the Employment Court, seeking back pay, compensation and interest, and the imposition of a penalty on the Crown for breaches of its statutory obligations and the asserted employment agreement.
The Crown appealed both decisions. Fleming cross-appealed and the findings from that hearing have now been released by the Court of Appeal.
Christine Fleming's case
Fleming has cared for her disabled son Justin since birth. She was not aware of the FFC scheme until 2018, but opted to survive on a Work and Income benefit because she argued she would have been financially worse off if she had accepted the Ministry of Health funding.
More recently she had moved to IF funding. She claimed she had not been funded appropriately since at least October 2013 and was entitled to back pay, compensation and interest.
Christine Fleming who cares for her severely disabled adult son Justin says she's "bitterly disappointed, but not surprised" by the Court of Appeal decision. Photo: NZ Herald / Sylvie Whinray
The Court of Appeal has now found the ministry did not "engage" or form a relationship with her before she lodged her claim with the Employment Court, meaning she cannot be recognised as a homeworker. It also found the Employment Court erred in finding Fleming had a personal grievance.
Fleming said the court's decision, which had taken more than a year to hand down, was a lost opportunity to acknowledge and clarify the muddled mess that paying family carers has become. She said it leaft people like her living in the "twilight zone".
"The current situation is an 'Emperor's New Clothes' scenario. The person with the disability has the choice and control in their daily life. That's great for those who have the capacity to do so.
"But for a small section who have high and significant needs, significant intellectual impairments and/or medical complications that are typically cared for by the family, this system is a sham.
"I don't know why our very specific, small section of the disability community, can't have a separate linked system," she said.
Peter Humphreys who cares for his severely disabled daughter Sian says the Court of Appeal decision has forced him to question who his employer is. Photo: NZ Herald / Sylvie Whinray
Peter Humphreys' case
While the court found the ministry did not engage with Fleming, it found it did engage with Humphreys under the now-defunct FFC scheme.
In 2014, his daughter Sian began receiving FFC.
By accepting Sian's application, the court found her father had become a homeworker of the ministry. But it said that pathway no longer existed because when FFC was replaced by IF, family carers could be employed by third party providers.
It said because IF was "explicitly a "bulk-funding" scheme," how the disabled person (or their nominated agent) chose to spend the funding was a matter for them.
Humphreys said the decision had left him scratching his head wondering if he was now his own boss.
"If I'm suddenly the employer, who do I even talk to about health and safety stuff? And what about grievances? Where do I go for that? It's like I'm stuck in this limbo without all the rights and protections I had as an employee," he said.
It also found a previous Court of Appeal decision relating to payments for staff who remain overnight, did not apply to family carers.
"Family carers in the position of Ms Fleming and Mr Humphreys are not subject to any active control or oversight and are not constrained by the Crown's terms and conditions as regards what they did outside normal working hours," the decision said.
"Further, many steps taken by a family carer might equally be viewed as being taken in their capacity as guardian or homeowner."
Fleming said the case had left her asking, if I'm not a homeworker, then what am I?
"The Employment Court decided my son wasn't capable of being my employer and I was a homeworker. The Appeal Court has ruled he can be my employer with an agent's help and I'm not a homeworker.
"The Ministry of Health says I'm an employee. IRD says I'm a schedular contractor. ACC says I'm a home support worker. I say, I'm a mum caring for her disabled son to the best of my ability."
Fleming's lawyer Paul Dale KC said they planned to seek leave to appeal to the Supreme Court.
This story was originally published by the New Zealand Herald.