What the families really want is a law change, and a fairer policy, so no one else has to go through what they have endured. Video / Chris Tarpey
A disability law described as a "shame on society" looks likely to be quashed, with a high-level Government committee to consider its repeal today. Families who care for their disabled loved ones have been fighting to overturn Part 4A of the NZ Public Health and Disability Act since 2013, when its introduction banned them taking discrimination cases over the government's family care policy to court.
The Herald understands a proposal to revoke the law will go before a Cabinet committee today, and if approved will come before Cabinet next week.
If the repeal goes ahead it would be a huge win for the families. The law's removal will mean the Government would be obligated to pay all carers - including spouses and parents of the disabled, who are currently unpaid - or it could face yet more legal action.
"I hope they get this right," said tetraplegic Peter Ray, whose partner Rosemary has cared for him unpaid since 1999.
"The [courts] talked about disabled people being 'entitled' to funding for necessary supports. The Ministry still insists l and others with very high support needs are 'entitled' to nothing."
Part 4A was rushed through under urgency by former Health Minister Tony Ryall in 2013 after the then government lost a succession of discrimination cases in court.
"I hope they get this right," said tetraplegic Peter Ray, whose wife Rosemary has cared for him unpaid since 1999. Photo / Doug Sherring
Outrage ensued, with leading law professor Andrew Geddis labelling the legislation "constitutionally outrageous" and a "shame on society" as it effectively places the government above the law.
"Now one of our most vulnerable groups have no effective means of pursuing what the law says they are entitled to," he said. "It never should have happened."
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".
Associate Health Minister Julie Anne Genter since called it "one of the worst human rights violations of the previous government".
However, in the year since the Government was formed, little progress has been made.
Genter and Health Minister David Clark said a review of the policy was underway, but refused to say what advice they had received from officials, Treasury or Crown Law.
The Crown's argument, outlined in a succession of court cases since 2000, has been wide-ranging.
Firstly, it said families should be covered by "natural support" - that there is a social obligation that requires family to look after each other.
It also said paying family members could taint the relationships within families, or that there was potential for fraudulent financial gain, or abuse.
Most strongly, however, it argued changing the policy would have wide-ranging fiscal implications, costing up to $593 million a year.
However, data shows that five years after the law was passed, just 354 families accessed the scheme, which was allocated $23m a year and expected to have up to 1600 families on its books.
The families say while they are skeptical of the latest moves to change the policy, they would like to be proved wrong.
Sushila Butt and her daughter Alisha, 23, at home in Kaitaia. Photo / Doug Sherring
"It is nice to hear they are doing this even if it is only after making our life a hell and with lots of stress," said mum Sushila Butt, carer to two disabled adult children.
