Focus: PM announces spouses will be paid for caring for ill or disabled loved ones. Video / Mark Mitchell
A mum caring for her disabled daughter says she's optimistic a proposed law change will create a fairer system for struggling families like hers - but it was still a case of "wait and see".
Angela Hart, from Christchurch, was part of a group of families who spoke out in the Herald earlier this year against the way family carers were treated, arguing the law and accompanying policy governing funding arrangements was discriminatory.
The families - some who had been battling the health ministry for 20 years - said excluding partners and parents of children under-18 from payment, only paying minimum wage and capping hours was unfair.
However, the law banned them from taking discrimination cases to court to argue against it.
Today the Government announced it would repeal the law - Part 4A of the NZ Public Health and Disability Act - and make changes to the Funded Family Care policy.
Ideally, that will mean spouses and parents can be paid for looking after their disabled family members (currently they are not), and payments will be fairer and easier to access.
"We are very pleased to see some sensible changes made," Hart said. "However we have been optimistic before and been let down."
Angela Hart, with daughter Gilly, says they are pleased changes to Funded Family Care are on the horizon. Photo / File
Hart said it wasn't just about discrimination towards parents and spouses, but that many aspects of the policy were flawed.
For example, her daughter Gilly was currently in hospital, and although Angela was there and caring for her around-the-clock, that wasn't recognised.
If Gilly stayed longer than 28 days - and she was currently on her second week - payments would be cut off.
"Even though I continue to care for her my payment will stop and I will have no way of paying bills, because that's the way it's set up," Hart said.
"So if we don't get home I'm going to lose my house. To me that seems malicious."
Hart said they simply wanted to see people who put a significant amount of time into looking after family members recognised and supported.
Sushila Butt and her daughter Alisha, 23. The Butts have two disabled children who live at home. Photo / Doug Sherring
Health Minister David Clark and associate minister James Shaw said options and timeframes for changes would be presented to Cabinet later this year.
They acknowledged the families had waited a long time for change, and that their human rights were breached by the law because it denied access to justice.
"The previous Government's Funded Family Care policy has been a nightmare for the families involved," Shaw said.
Over the next couple of months the Government would run targeted consultation with affected families and stakeholders on the key issues within Funded Family Care, they said.
It would cover issues of eligibility, pay rates for carers, the employment relationship, and the type of care covered.
Rosemary McDonald has gone unpaid despite caring for partner Peter Ray for more than 20 years. Photo/Doug Sherring
A lawyer for a group of family carers known as the King plaintiffs, Simon Judd, said the announcement was "fantastic news".
His clients, who included partners Peter Ray and Rosemary McDonald, Sushila Butt and husband Roy, Angela Hart and Gilly, and four other families would continue to seek historical redress through the courts for the time they went unpaid, despite the law change, he said.
Law professor Andrew Geddis said it was "exceptionally pleasing" the Government had decided to address the issue.
"The original legislation was a stain on New Zealand's constitutional history," he said. "It's to be hoped the policy that's developed will treat these vulnerable New Zealanders in a far fairer and more humane way."
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 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.
