The Government will repeal a disability law described as a "shame on society" and overhaul its policy on paying families who care for their disabled loved ones.

Health Minister David Clark and associate minister James Shaw announced the decision today, after a long campaign by families and human rights groups for fairer treatment.

Clark said Cabinet had agreed to consider changes to the way it pays families - a policy known as Funded Family Care - with options and timeframes for changes to be presented to ministers later this year.

Health minister Dr David Clark acknowledged the families have had to wait a long time for a policy change. Photo / File
Health minister Dr David Clark acknowledged the families have had to wait a long time for a policy change. Photo / File

Ideally, that would mean spouses and parents could be paid for looking after their disabled family members -currently they are not - and payments would be fairer and easier to access.

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It also agreed to repeal Part 4A of the NZ Public Health and Disability Act, which underpins the policy, and also bans families taking discrimination cases about it to court.

"There have been consistent calls for Part 4A to be repealed because it is discriminatory," Shaw said.

"In particular, Part 4A has been inconsistent with human rights legislation because it denies families the right to complain about breaches of their human rights relating to family care policies."

June Rameka has spent a lifetime fighting for fair payment for caring for her daughter Maraea. Photo / Alan Gibson
June Rameka has spent a lifetime fighting for fair payment for caring for her daughter Maraea. Photo / Alan Gibson

Party 4A was rushed through under urgency by the former government in 2013 in a bid to stop a steady flow of discrimination cases - which it kept losing - in court.

It was a decision met with outrage by families and human rights experts.

Law professor Andrew Geddis labelled the move "constitutionally outrageous" as it effectively placed the government above the law.

In its pre-election manifesto, Labour said it would repeal the legislation, and that it would ensure all family caregivers could "provide and be paid for assessed care for their disabled adult family member".

After Labour was elected, disability groups petitioned for the law to be overturned, and then earlier this year, a group of families known as the King plaintiffs told their stories to the Herald in an effort to hold the Labour Government to its word.

Rosemary McDonald has gone unpaid despite caring for partner Peter Ray for more than 20 year. Photo/Doug Sherring
Rosemary McDonald has gone unpaid despite caring for partner Peter Ray for more than 20 year. Photo/Doug Sherring

The family's stories and the challenges they faced were acknowledged in today's announcement.

"The previous government's Funded Family Care policy has been a nightmare for the families involved," Shaw said.

"We acknowledge that many families have waited a long time to see this policy changed and I want to thank them for their ongoing patience," Clark 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.

Consultation would cover issues of eligibility, pay rates for carers, the employment relationship, and the type of care covered.

Clark said consultation was needed to ensure any new system is durable and has enough flexibility to meet everyone's needs.

"For example, most family carers don't want to be employed by their disabled child or a disabled family member they live with, but some do," he said.

Green Party leader James Shaw said the introduction of Part 4A had been a
Green Party leader James Shaw said the introduction of Part 4A had been a "nightmare" for families. Photo / File

A lawyer for the King plaintiffs, Simon Judd, said the announcement was "fantastic news".

While their compensation case seeking redress for historic non-payment or underpayment would go ahead, changes to the policy were very welcome, 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.

2018: Government announces its intention to repeal Part 4A and making a new Funded Family Care policy.