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
New research into support for family carers of the disabled has sparked calls for urgent change, after study participants labelled the current system "disgusting", "discrimination", "nonsense" and "appalling".
The study, commissioned by the NZ Carers Alliance, interviewed disabled service users, their families, officials, lawyers, advocates and health workers - finding widespread discontent and scepticism about the Government's commitment to paying families for care.
Those interviewed said the policy - brought in under the previous National government - was exclusionary, unfair, complex and the legislation it was based on was unlawful.
"In summary, by far the majority of informants called for an immediate review of the family carer payment schemes and policies to make them fairer," the study said.
"Choice and flexibility, along with fairness and non-discrimination, are called for."
Earlier this year, a group of families also spoke out in the Herald, asking for the Government to repeal the law underlining the current policy, known as Funded Family Care (FFC).
June Rameka, left, gives her daughter Maraea Waitoa, 32, have spent years living on a mish-mash of welfare and disability benefits. Photo / Alan Gibson
On Monday, Grant Lovett and his wife Glenda came forward saying were living on food parcels, struggling to survive as Grant slowly died of motor neurone disease. As his spouse, Glenda is excluded from payment.
Before that, a Court of Appeal decision had also criticised the policy and the Government response to compensation claims, and said it did not want any more challenges to the issue in court.
Legislation enabling Funded Family Care, which excludes spouses and parents with younger children from payment and limits family carers to the minimum wage, was rushed through Parliament under urgency in 2013.
Outrage ensued not only at the policy, but at the part of the legislation that barred legal challenges, saying families could not take discrimination claims against it to court.
Health minister David Clark and associate health minister Julie Anne Genter have said FFC is under review, however Carers Alliance spokeswoman Laurie Hilsgen says the study is proof things need to change immediately.
"We don't need more consultation to make improvements to Funded Family Care, it's been consulted to death," she said.
"Families have waited a long time for improvement and it's time to get some progress."
Rosemary McDonald has never been paid for the work she does caring for her husband Peter. Photo / Doug Sherring
Because of a significant underspend on the policy - Treasury appropriates $23 million a year but only $8 million is spent - she said initially, any change wasn't about money.
"Currently, the funding is very hard to get, and there's a lot of injustice in the policy. They can improve both of those things right now and we would like them to do that."
While Hilsgen had been part of the "working group" process before Funded Family Care was passed, she said the process was flawed, and the Members of Parliament who voted for it should "examine their consciences".
"It was a cynical process and not something that any of us involved were proud of. I felt used. And it had a very human cost. I would not want to see that process repeated here."
