Government ministers will tomorrow be challenged in court by the mother of a disabled man over the way family carers are treated.
Christine Fleming, who has cared for her son Justin Fleming for nearly 40 years, is taking the case against the Minister of Health Andrew Little and Minister for Disability Issues Carmel Sepuloni before a full bench in the Employment Court.
Fleming, from Auckland, is being represented by Paul Dale QC. It is the latest challenge by parents of disabled children to have their care recognised by the Government and be adequately paid for it.
If she is successful, it could have significant ramifications for carers' funding - not only in the disability sector but other areas like foster care.
The Government agreed in 2018 to change the way it pays families who care for disabled relatives.
But disability advocate Jane Carrigan, who filed the papers in the Employment Court, said no progress had been made and she wanted to force the Government's hand.
At the heart of the employment case is whether Christine is employed by her son, Justin, or the Ministry of Health.
Carrigan said they wanted a declaration that Christine was providing disability support services and that the ministry was her employer. They would then argue that the ministry had failed in its obligations as an employer.
"The work Christine does is employment. Everything she does, if she wasn't there, somebody else would be paid to do it. So I am saying she is being exploited by the Government because they know if they don't pay these people they're going to provide the service anyway."
Justin, 39, has Williams syndrome, a development disorder, and requires full-time care. Christine makes all of his meals (he has coeliac disease), showers and toilets him, brushes his teeth, and cleans up after him. She has done so since he was born.
Under the existing Family Funded Care system, Christine must be an employee of Justin to get funding from the Ministry of Health.
Dana Cocks, Justin's sister, said that was an "outrageous" requirement.
"We're not trying to take anything away from him. But the ministry needs to be real about it. These kids, some of them can't speak, they have no idea.
"If mum has an issue with her employer, she would have to have an argument with Justin about it - and he would not have a clue," she said.
Christine's funding was close to the minimum wage and was reassessed every six months - despite no changes in Justin's permanent condition.
"She doesn't want to be paid for 24/7, that's not what it's about," Cocks said. "But if they gave it to somebody else, or Justin got dropped off somewhere, someone would be being paid to do it - and paid a lot more."
The hearing is set down for five days, and will include submissions from the Council of Trade Unions and the Human Rights Commission.
A brief history of family care
2000: Discrimination complaint lodged with the Human Rights Commission about the Government's refusal to pay family carers.
2005: The complaint is unable to be resolved and is lodged with the Human Rights Review Tribunal.
2010: The Atkinson claim is upheld by the Human Rights Review Tribunal, finding that excluding payments to carers of disabled family members was discriminatory and in breach of human rights.
2010: An appeal by the Ministry of Health is dismissed by the High Court.
2012: An appeal by the Ministry of Health is dismissed by the Court of Appeal.
2012: The government announces it will not appeal against the Atkinson case to the Supreme court. It instead plans policy to address the issue.
2013: Part 4A of the NZ Public Health and Disability Act 2000 is rushed through on Budget night under urgency. It underpins a limited Funded Family Care policy, and outlaws any further court cases.
2016: Margaret Spencer, the mother of an adult disabled man, is awarded $200,000 compensation by the High Court for discrimination, for the years the Ministry of Health refused to pay her for her work.
2017: The Human Rights Commission complaints of seven families are bundled together as the King case, and put forward as a compensation case to the High Court.
2018: Shane Chamberlain and his mum Diane Moody win their case, which argued the Ministry of Health had wrongly assessed the number of hours Diane should be paid for looking after Shane.
2018: King Plaintiffs speak out about their case, and call for Part 4A to be repealed.
2018: Government announces its intention to repeal Part 4A and making a new Funded Family Care policy.
2020: Government repeals Part 4A. Christine Fleming takes Government to Employment Court over her son Justin's care.