Parents who care for their disabled children say it is unfair they have been excluded from a pay equity settlement giving care workers significant pay rises.

The government yesterday confirmed the settlement, which would give 55,000 mostly female care and support workers $2 billion over five years, in a move that was welcomed by almost all in the sector.

But the pay rises did not include caregivers within families, and Cliff Robinson - an 80-year-old pensioner who has cared for his disabled adult children single-handedly for almost 50 years - said that was unfair.

Mr Robinson led the campaign for family members who were primary caregivers to be paid, winning the right to be paid the minimum wage in 2012.

He told Checkpoint with John Campbell today that he had battled for more than 18 years to be paid a reasonable wage for caring for his children at home, and yesterday's decision felt like a slap in the face.

"I felt a sense of worthlessness. I just thought, 'How could they be so mean and so mean-spirited towards us? What have we done wrong, as parents?'"

He said he had contacted the Human Rights Commission about the exclusion from the pay equity settlement.

Mr Robinson's children - Marika, 50, and Johnny, 48 - suffer from the neurodevelopmental disorder microcephaly. They attend an IHC centre between 9am and 3pm, but he is their full-time caregiver.

He said he had been left feeling like the government would prefer to have his children in state care, but no facility could replicate the care he gave them.

"I know there is no place like home, there is nobody who can give my daughter a hug like I can. I mean, a male caregiver can't give a girl a cuddle, it's inappropriate. So there's those little things that mean so much."

He said he felt the government did not include them, because the current package for family members already existed.

But he said the family members were the only group of people in the country legislated to only get the minimum rate.

"There is no other group of workers in New Zealand that are condemned to the minimum rate, forever. That's what the legislation says, we can't get anything but that.

"Surely that's indefensible, it's immoral, and I can't understand how the Ministry of Health and the Members of Parliament can allow this to continue. Why can't they just have an amendment to the act to take that away?

He said the family members had a simple request.

"We don't want an arm and a leg, we don't want double time and sleepovers and all that. All we want is what other people in the industry are getting.

"It's just a continuing battle. It's just the principle. Why should we not get it?"

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