They’ve been caring for their disabled children since birth. Now they’ll be recognised as employees

Tuesday, 9 December 2025

At the centre of a legal case are two severely disabled adults whose parents have been caring for them since birth. Now, after years of legal challenges, going all the way up to the Supreme Court, the parents of those two children have been recognised for the work they do.

This decision will likely affect thousands of family carers and has been described as “huge” by one advocate who said her decade-long fight has been exhausting.

Christine Fleming has cared for her son, Justin Coote, since he was born in 1981 while Peter Humphreys has cared for his daughter, Sian Humphreys, since her birth in 1988. They are just two of thousands of parents caring for their disabled children.

Both Fleming and Humphreys had previously been to the Employment Court where they were recognised as “homeworkers” and therefore, under the Employment Relations Act, were allowed the same protection as other employees, including rights to minimum wages, holiday pay and protection against unfair treatment.

But last year, the Court of Appeal overturned that decision.

On Tuesday, the Supreme Court unanimously ruled that both Fleming and Humphreys are indeed “homeworkers” - a decision that, as Fleming’s lawyer told the court, will likely affect thousands of resident family carers who provide essential support services.

‘Work goes beyond love alone’

For Fleming and Humphreys this day has been a long time coming, and it wasn’t just about them and their children - but the thousands of carers across the country.

“The care I provide for my daughter is not only an act of love, but it is also skilled, demanding work that deserves to be recognised and fairly rewarded. This work goes beyond love alone. It involves dedication, knowledge and responsibility that meets the same standards expected in professional care settings,” Humphreys said.

For Humphreys, caring for his daughter is the most important role he will ever have, but it also replaces services the government would otherwise need to provide.

In a statement on behalf of Fleming and her family, they said they were “thrilled” with the decision.

“Our motivation throughout has been to achieve a fair and just outcome for all families caring for family members with highly complex needs.”

The statement went on to say that it was now up to the Ministry of Social Development, Ministry of Health and Disability Support Services to change how they recognise the “extraordinary” amount of unpaid work carried out by family carers who provide very high-level, 24/7 care.

“How this will work will now need to be addressed by the Government, hopefully in a timely, fair, and common-sense manner that reflects the unique realities of these families. This work cannot simply be forced into existing employment systems within the MOH (MSD & MSS).”

For Fleming, the decision means she’ll now receive regular, reasonable financial support - which takes a huge stress off.

Independent disability advocate Jane Carrigan has been fighting this very issue for the past 10 years and in support of Fleming for much of the past decade.

“It has been unrelenting and exhausting,” Carrigan said, adding she was also delighted with the Supreme Court’s unanimous decision.

“I always knew we were going to win.”

Carrigan said thousands of families will be affected by this decision - those who cannot work because they care for their child, sibling or other family members.

She said she has another 25-odd families “on hold” at the Employment Relations Authority awaiting the Supreme Court decision.

Carers provide “extremely high levels of care” that cannot be compared, Carrigan said.

“The country has a responsibility to protects its citizens… and that includes those with disabilities. The Government has relied solely on exploiting family carers.”

Minister reassures there should be continuity

Minister for Disability Issues Louise Upston said in a statement on Tuesday she will receive advice in due course, but she “expected Disability Support Services to take time to carefully consider the Supreme Court’s decision”.

“I want to reassure the disabled people, their family, whānau and carers that existing care arrangements can continue while this consideration takes place,” Upston said.

“The work that family, whānau and carers are doing is very important to disabled people and DSS, and our government.

“Earlier this year we announced changes that will give more consideration to the needs of family, whānau and carers in the DSS assessment process.”

Years of legal battles

Lawyer Luke Meys was representing Justin and Sian at the Supreme Court - both have life-long disabilities that require constant supervision and around-the-clock care. Justin has Williams syndrome and Sian was diagnosed with Angelman syndrome as a young child - she has no verbal language. Both cannot care for themselves and without their parents’ care, would likely be in residential care.

Since the late 1980s/early 90s, institutions were shut down by the Government and it was left up to families to look after their disabled family members, Meys said.

In 2013, the law changed so family members who provided support services were allowed to receive payment for their care of disabled family members. This was after the Court of Appeal found it was discriminatory not to pay family carers when non-family carers were paid for providing the same care.

However, Meys said, the Supreme Court decision “effectively says the Government ignored what the Court of Appeal said”.

The lawyer went on to say the Government has been getting a “really, really good deal” by getting family members to care for their children.

“It would cost the Government far, far more if a parent is not doing the work and it is being contracted out to a third party,” he said.

“Caring for a high-needs disabled person who needs 24/7 supervision is stressful enough, without having to worry about not being paid. Having to fight for more support, while keeping up with the complex paperwork required by frequent policy changes, could have resulted in some parents feeling they are forced to put their children into unsatisfactory full-time care,” Meys said.

Some of Meys’ clients are non-verbal and have intellectual disabilities, so they don’t fully understand the legal process and what has been going on.

“But what they do understand is love and care.”

From 2013 through to 2020, Fleming received a benefit and stayed at home to care for Justin. After the Funder Family Care scheme came into effect, Fleming applied for a funding under that scheme in 2018. It provided a maximum 40 hours a week - which Fleming would have accepted but she was initially offered funding for 15.5 hours and then 22 hours. She turned down the FFC and argued she was better off on the benefit.

Since 2021, she’s received funding through the Individualised Funding (IF) scheme.

Humphreys was funded under the FFC from 2014 through to 2020 and then the IF scheme.

In separate Employment Court proceedings, both Humphreys and Fleming argued they were “homeworkers” and therefore employees of the Ministry of Health.

But the Court of Appeal overturned that decision.

The questions for the Supreme Court were whether the Court of Appeal was correct to determine Fleming was not “engaged, employed or contracted” as a “homeworker” and as to the test for “work” when work is conducted overnight in their home.

“… as we see it, the result for Ms Fleming is that, by making an unreasonable (if not unlawful) offer to her in circumstances where she would have accepted an offer reflecting the maximum allowable, the ministry has effectively compelled her to continue working but as a volunteer,” the Supreme Court found.

It went on to say that the ministry was aware Fleming was caring for Justin.

“Ms Fleming was undertaking work the ministry would otherwise have had at least some obligations to undertake if she refused or was unable to do this work.”

If Fleming was unable to care for her son, the state would have had to provide him care.

For Humphreys’ appeal, the question was whether the Court of Appeal was correct to find that he was not “engaged, employed or contracted” as a “homeworker” when receiving funding under the IF scheme.

The Supreme Court said, looking at the documentation, little changed from the funding move from FFC to IF and Humphreys’ care of Sian did not change.

In Humphreys’ submission to the court, he said the ministry assumed Sian had capacity to be involved in the whole process - something she did not have given her disability.

In regards to the notion of “work”, the Supreme Court found both Fleming and Humphreys are subject to “constraints and responsibilities and that what they do is of benefit to the ministry as their employer. They are working when caring for Justin and Sian, at least for some of that time.”

“Ms Fleming and Mr Humphreys both willingly accept that the model is one of pooling state and family resources to ensure appropriate standards of care are achieved,” the court said on the question of precise hours.

The Employment Court will also now consider Fleming’s lost wages and holiday pay.

Fleming and Humphreys have been contacted for comment through their lawyers.