More than 570,000 adults in New Zealanders have a disability because of illness or accident and 92,700 of them are classified as having high needs.
Nine families went to the Human Rights Review Tribunal claiming discrimination because, while they had been assessed by the Ministry of Health as being eligible to receive paid care, the ministry would pay outsiders, but not family members.
Dr Mary Butler, a research fellow at the University of Otago, said this week she was "high as a kite" when she heard the decision.
"Internationally, it is a very important decision. To have family carers recognised as competent and skilful and to have them given their dignity is an enormous step forward and, of course, an acceptance of the reality."
However, the ministry's decision to appeal meant more waiting for families who had struggled for years with the cost and responsibility of caring for relatives, she said.
The ministry had said it would might take a year to gather information for the appeal, after which time a date would be set, she said.
"One mother died waiting for the case to be heard and her daughter ended up in the exact place she had worked so hard to keep her out of.
"Another mother in her mid-70s is still feeding and showering and toileting her son in his 40s."
Dr Butler said she would do whatever she could to help the families through the appeal.
"What is needed is a wage, not a paltry allowance.
"We need to provide families with choices, and paying them to care for family members is one of those choices."
Dr Butler, who is Irish, trained as an occupational therapist and emigrated to New Zealand in 1993.
Her work has mainly been with people with brain injuries, most of whom receive ACC.
She said it was "a revelation" to discover ACC had been paying family members to care for relatives since 1993.
Her research with family members paid to look after relatives on ACC found the disabled person and their family coped better when they were adequately compensated, she said.
Dr Butler attended the human rights tribunal hearing, held in September 2008, as an expert witness.
She described it as a "David and Goliath" hearing.
"The ministry had . . . a whole row of computers and an army of lawyers and expert witnesses.
"The families had three people and a few bundles of papers . . . and I thought they didn't have a hope.
"But there was . . . a powerful witness from the families, and I think that is what made the difference."
Dr Butler said she had difficulties with the ministry's reasons for appealing the decision: that it was natural for family members to care for relatives, that families did not do as good a job of caring as agencies did, that expecting families to be carers was too burdensome, and that the country could not afford to pay family members as carers.
Affordability needed to be debated, but her research with ACC patients showed paying family members as carers was generally more cost effective than a person being in a care facility or being cared for by agency staff.
Dr Butler spoke about her research and the tribunal's decision at the 2010 New Zealand bioethics conference which started in Dunedin yesterday.
About 90 researchers, ethicists, government officials and health practitioners from New Zealand and overseas have gathered for the conference, which ends tomorrow.
