The longest fight
New phase in battle for families of disabled
Families fighting a 20-year battle to be paid for caring for their disabled loved ones are calling for the Government to repeal the law protecting a “discriminatory” care policy.
Legislation enabling the policy, which excludes spouses and parents with younger children from payment, and limits family carers to the minimum wage, was rushed through Parliament under urgency by former Health Minister Tony Ryall in 2013.
Outrage ensued not only at the policy, but at the part of the legislation that barred legal challenges by saying families could not take discrimination claims against it to court.
In its election manifesto, Labour said it would repeal the law — Part 4A of the NZ Public Health and Disability Act 2000 — and ensure all family caregivers could “provide and be paid for assessed care for their disabled adult family member”.
But those subject to the policy fear that promise may have been forgotten.
Seven families, known as the King plaintiffs, are taking a High Court compensation case against the Government and say even if they are paid for past wrongs, that won’t fix present-day problems.
“It’s not about the money any more,” said tetraplegic Peter Ray, whose partner, Rosemary McDonald, cares for him unpaid because of a ban on paying spouses. “The system is broken, and that needs to be brought out in the open.”
The Funded Family Care legislation was brought in after an earlier group of families won a 12-year human rights case against the Ministry of Health in 2012, saying it was discriminatory not to pay people on the basis of family status. Although the legislation fixed some historical issues by finally allowing family members to be paid for their work, it remained discriminatory because spouses, or those with children under 18, were excluded.
And although outside carers were paid market rates, family carers could only be paid minimum wage, for up to 40 hours per week.
Further compensation claims, like that of the King plaintiffs, were limited to those who already had complaints with the Human Rights Commission.
And, in a move a leading law professor has labelled “constitutionally outrageous”, the legislation outlawed legal challenges to the new policy — effectively placing 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,” said Otago University’s Andrew Geddis.
The Crown’s argument, outlined in a succession of court cases since 2000, was that paying family to care for the disabled would cost up to $593 million a year.
But five years after the law was passed, only 354 families are accessing the scheme, which was allocated $23m a year and expected to deal with up to 1600 families.
“It’s no wonder,” says mum Angela Hart, from Christchurch. “The process to get it is difficult and degrading, and then you are likely to get only a few hours paid.”
Health Minister David Clark said he completely understood the “depth of feeling” on the issue and had the utmost respect for families that cared for high-needs family members.
He said he had asked for options on “reforming” Funded Family Care, but the work was at the very early stages and he was not yet ready to comment on it in detail.
Julie Anne Genter, Associate Health Minister and Greens MP, said she was “appalled” that the families felt they had no option under the previous Government but to take numerous cases for resolution.
However, neither would commit to repealing the law outright.
The Ministry of Health said Funded Family Care was under review, with the rest of the disability support system, which it wants to make easier to access.
Toni Atkinson, group manager Disability Support Services, said there had been changes to Funded Family Care in the past few years, including attempts to make assessments more sensitive.
The ministry said it was working on a briefing for the minister.
The families’ lawyers, Simon Judd and Frances Everard, hope to settle the King claim without litigation.