Carer dad says Ryall should 'give us our due'

Cliff Robinson (centre) has looked after Marita and Johnny for nearly 40 years. Photo / Richard Robinson

Cliff Robinson has a message for Health Minister Tony Ryall: "Show some sense and good grace and give us our due."

The 73-year-old Thames man is hoping the Government doesn't jeopardise his chance to be paid for caring for his two adult disabled children after a landmark decision last week paved the way for parent caregivers to be paid for their services.

Until now, parents who care for their disabled adult child at home haven't been allowed to receive payments for the work they do - even though a stranger who did the same thing would be paid.

A group of nine families took the Ministry of Health to the Human Rights Review Tribunal arguing that they were being discriminated against. The tribunal agreed with them.

Chief Human Rights Commissioner Rosslyn Noonan said the Government should begin payments immediately. The Government has indicated it will appeal against the decision.

Mr Robinson, who has been the sole caregiver for his children John and Marita for nearly 40 years, couldn't believe it when he read the news.

"I thought I was seeing things. It was clear cut, no ifs, no buts ... It will be illegal not to pay us."

John and Marita are both microcephalics, resulting in their being intellectually disabled.

Mr Robinson decided to keep his children at home because he wanted to give them "as normal a life as I can" and didn't want his family broken up.

"For 33 years, I suffered the indignity of the domestic purposes benefit so that my family could live a normal life. On reaching 65, my DPB stopped and I received national super."

But there would be no retirement for him. "I love my son and daughter and I want to keep them in the home that they love for as long as I can.

"If they went into care, it wouldn't matter how good it was, it doesn't replace a parent's love."

Staff constantly changed and that could be unsettling, especially for John. "They [disabled offspring] love the stability their parents give them."

John in particular has been difficult to care for. As well as being microcephalic, he is diabetic and suffers from schizophrenia, which sometimes leads to violent episodes.

But Mr Robinson doesn't regret his choice for a moment. "Not for one iota. It has been a long, lonely journey, but it's one I don't regret. It's giving them a chance to live."

He recently took the pair to Taranaki, and the family have walked the Abel Tasman Track as well.

He said the payments, if allowed, would change his life completely. "I would be able to pay someone to stay with Johnny for a couple of hours and pay for respite care."

Mr Ryall said the tribunal's decision had "serious implications" beyond the disability sector and was being studied by Ministry of Health and other Government lawyers.

"Indicative advice is that it will almost certainly be appealed. The Government recognises this is a difficult issue of balancing the interests of those who are being cared for, those doing the caring and taxpayers."