A brave dad shoulders the heartbreaking burden of care

By Catherine Masters

Cliff Robinson has invested a lifetime raising his disabled son and daughter and is fighting the Government to lighten his load.

Cliff Robinson with his two intellectually disabled children, Johnny and Marita, at their home in the Coromandel hills. Photo / Natalie Slade
Cliff Robinson with his two intellectually disabled children, Johnny and Marita, at their home in the Coromandel hills. Photo / Natalie Slade

Up the Thames Coast Road, around a corner and a little way into the Coromandel hills, you come to a gate blocking a driveway.

Beyond is a white house with a big vege garden, a chook house and a couple of friendly cats.

This is the house where Marita and Johnny live.

They are 42 and 40 but really they are like children. They live here with their dad, Cliff Robinson, who is 73 and who takes care of them, just as he has been doing since they were little when he gave up his job, lived on a shoestring and somehow coped when his wife couldn't. She quit the family years ago.

Cliff had a dalliance with the bottle in the grim days after she left, we're talking more than 35 years ago, but doesn't touch a drop now.

His one motivation through the decades has been to give Johnny and Marita as normal a life as possible.

They were born with microcephaly, which is a condition of a small head and brain. Johnny has schizophrenia, too, and has developed diabetes.

Cliff made the call long ago not to leave his children in care but to raise them as a family, intact and loved.

It has been a different life to what he expected as a young man. The hours are full-on and there is scarce money.

But it has been a privilege, too, he says, gazing with fondness at his children, who spend much of their time just a step away from their dad.

So here they are, in this homely hideaway, living a life most of us would recognise as not quite normal but one which brims with warmth.

It's hard, though, being a solo dad in your 70s. Cliff just wishes the Government was making life easier, not harder.

The Robinsons are one of the families in what has become known as "the family as caregivers case".

After a long battle, the Human Rights Tribunal ruled that the Ministry of Health was breaching human rights by not allowing parents a caregiver allowance because they are related to the people they care for.

The families' elation didn't last long because the Government announced last week it would appeal the ruling.

Really, Cliff says, the struggle for recognition and dignity spans decades.

We visited Cliff, Marita and Johnny to find out what life is like for this family, one of nine involved in the case.

He cooks his kids their tea each night, buys Marita a new Barbie doll when she needs one and handles Johnny's black moods when they come upon him.

Johnny had one of those moods this morning, before we arrived.

Cliff calls them a visit from the black dog but when we get there, passing through the gate built to keep him safe, Johnny is calm again and politely shakes our hands.

Marita introduces herself to the photographer and says "nice to see you" with a beaming smile.

She was born first, in 1967, and is severely intellectually disabled.

She's a ray of sunshine, though, sweet and adorable; a young woman who loves wedding dresses and tries to mother, and a child who loves Barbie dolls and who relies on her dad.

After her birth, Cliff and his wife talked to doctors and were told it was highly unlikely they would have another disabled child.

Johnny, however, was born with the same condition and also inherited his mother's schizophrenia, hence the black dog moods, says Cliff. He can be unpredictable and challenging.

It's nearly lunchtime and inside the house, there's a bit of a mess going on in the kitchen.

Marita's eagerly helping "Daddy" make scones for lunch.

"Two ounces of butter, love," he tells her, "I'll help you."

In truth, Cliff does most of the scone-making but Marita mixes with gusto and cuts the dough mixture, and Johnny licks the bowl.

As banging and clattering goes on in the kitchen, Cliff says matter of factly it will be 40 years this year that their mother, who was from Ireland, left them.

"She left on the 15th of June, 1970. She just walked out. Just got out of bed, left the kids in bed, and left."

He was a merchant seaman then and a Kiwi bloke, "you know, blinkin' hard-living... I wasn't that wonderful, and their mother, she was a schizophrenic and she left, and here I was, on my own."

Marita was 3 and Johnny 8 months. They were in care then and Cliff wondered what the hell he was going to do.

He was told not to visit Marita for a while because it might upset her and almost took the opportunity to run away.

"I thought to myself 'I just can't stand this, I'm going to go to South America. I can jump ship, it's quite easy', and I thought I'd just lose myself."

But he went to see Marita instead and his life changed.

"She ran towards me and she threw her arms up and she was just so... she was just... oh, so elated. She jumped all over me and that, of course, put an end to losing myself."

Soon he quit his job and lived on the domestic purposes benefit, taking Marita home first, then Johnny, and agreeing to take on another disabled lad called Tony, who he fostered for eight years and who died last year.

The kids still miss him.

"Yeah," says Marita, "He's our mate."

"Tony, Tony," says Johnny.

Johnny, who's licking the spoon now and has some dough on his chin, announces that his nana died.

Cliff explains his mother lived with them for a couple of years and that Johnny sometimes dwells on death.

He veers off with, "hang on, sweetie," to Marita. "We've got to put the rising in first, can you just wait, love?"

Then he's back in time again. It was an enormous decision to make, he says.

"Here I was, in nappy valley out in West Auckland, with three kids. It was very difficult to talk to neighbours, because I was looked upon with some suspicion."

Marita informs him the mixture is lumpy.

He had an agitator washing machine in those days and all three kids were bed-wetters. He didn't have the money for spare sheets, so had to wash them every day and they'd get caught up in the agitator.

"It was this perpetual battle to have clean sheets."

Cliff takes over the scone-mixing - he didn't know how to make scones back then, he's a dab hand now.

"It really was a hand-to-mouth existence," he says.

"We had virtually nothing. But luckily I came from a working class family in Onehunga and my father was a big gardener and we had chooks at home, so I had a big garden and I had chooks and I've always been a fisherman [he has a small aluminium boat called Marita] and we went down and got mussels and pipis. We had ducks as well and we used to - what happened to the ducks, John?"

Cliff translates: "Chop their heads off, yeah. And you know, I had to learn to sew and make jam and preserves and freeze things, and all those skills. I hadn't a clue... it was very, very hard and very lonely and that's probably been the hardest thing."

He's had relationships, he says, but they always came down to a choice: the woman or the kids.

The kids won.

He never had doubts he was doing the right thing, "not from that first smile that I told you about, in the IHC home."

Marita giggles. She loves her dad, you can see it in her eyes.

Cliff's had flak over the years because he has taken his children on the odd trip abroad.

You're not supposed to do this if you have disabled children, he says, but he wanted them to see the world and did it anyway, by scrimping and saving and through the kindness of strangers.

This newspaper ran a story about him in 1982 and in it, Cliff said he and the children would like to travel. People sent in money so they went to visit an uncle in Hong Kong and then on to China.

The kids loved it, he says.

After that, he would decide on a country cheaper to live in per day than New Zealand and would save up and pay the airfares from the difference.

"But they seem to have taken bitterness towards it, the authorities, that I've done this," he says.

"They've never ever liked it, never accepted it. Nobody's ever said, 'oh, you've done a good thing'. Ordinary citizens have."

He noticed, he says, during the Human Rights case, that none of the officials would meet the eyes of the parents.

Again, none of them stood up and said "you're doing a good job".

In 1995, the children (then in their 20s) wanted to know about their mum, so he saved hard from his DPB and their invalid's benefits and took them on a trip to Tipperary.

In the end it didn't go well, but when they got back he found Johnny about to be prosecuted for leaving the country.

It was one of the stages of "beneficiary bashing" where you couldn't leave the country for more than a month and he had forgotten to notify the authorities.

"So they were going to prosecute Johnny and take him for back payment for going to see his mum."

There have been many such indignities, he says.

The children get $230 a week on the invalid's benefit, and he now receives national superannuation.

He has had an extra payment since he took the case in 2002 but this is now in dispute.

The Ministry of Health argues that what he and the other parents do is natural care and part of an unwritten social contract.

It's ironic, he thinks, that if he put Johnny into care he would cost way more than what the parents are asking for, which is only the paid hours of care their children are assessed as requiring and which would be paid if a stranger came to the home to look after them.

The children have wandered outside while the scones bake. Johnny is saying "hello pussy, hello pussy," to Ziggy the cat.

They point out to the photographer where another cat is buried and Marita picks up Ziggy and gently strokes him.

Inside, Cliff shows us some letters he has received over the years. He stood for Parliament in the 1990s, wanting to make a stand for people like him and because of benefit cuts and asset testing, all issues affecting the lives of the most vulnerable.

He didn't get in, but he remembers coming home one day to a nasty letter saying he was the Alliance MP for Roskill and that he may have received income from this while receiving income support and could be prosecuted for this offence.

"But I was never an MP. They're almost hounding you. You know, I stood for Parliament. So what? It just goes on and on."

One of the issues raised is the children's right to independence, that by keeping them at home he is in some way impacting that.

They do go to a training centre during the day and, anyway, he says this is a bogus argument, because by independence they mean for them to live in care, but if they did he reckons most of their invalid's benefit would go to the home, leaving them about $40 each a week.

"How can you have independence on $40 a week?"

After lunch, Marita shows us her bedroom.

She has a pretty Tinkerbell bedspread and walls covered in photos.

She opens her wardrobe to show us the wedding dresses she collects.

"I've got another wedding dress, I've got another one, I've got another one," she says, bringing them out.

She'd love to get married, Cliff says.

"Yeah!" she says.

She has a row of Barbie dolls at the foot of her bed and shows us the latest one she asked her dad to get her for Christmas.

Cliff says he sometimes thinks he could have had three or four grandchildren by now.

But it's no good thinking about that. "And in a way I've got a child, an adult and grandchild all in one, haven't I."

In Johnny's room there is a single bed, a big old wardrobe and a 14-inch TV with Survivor on in the background.

What Johnny really wants to show us is his key collection. He has huge bunches on keyrings.

Ask him why and he says: "Um. Um. Dad?"

A little later we drive to the local pub where they go for fish and chips.

It's about being normal, Cliff says. "You don't get things like that in care, do you?" he says.

Johnny wants a Lion Red, Marita a shandy and Cliff sups on lemonade and raspberry.

Johnny finishes his beer quickly but doesn't ask for another and collects the empties and takes them back to the bar.

Cliff, of course, has thought about the future.

He's a youthful 73 but has made arrangements with friends who have agreed to make sure the children are well looked-after when he can't do it himself anymore.

For now, though, they are a family unit, and one of the strongest.

When it comes time to leave, Johnny shakes our hands over and over and Marita gives us some eggs from the chooks.

"Boil the water first," she says, looking concerned.

"Water, water. Eggs, too. Boil it up."

BEFORE THE COURTS

The successful discrimination claim eight families made against the Ministry of Health is bogged down in legal manoeuvring.

The families took the Ministry to the Human Rights Tribunal for the right to be paid to care for their disabled adult children - and won a partial victory this month.

The Government is appealing the decision.

The children have all been assessed as requiring a certain number of hours of care.

While the state provides funding for these hours and will pay strangers to perform the care, it refuses to pay if the care is provided by family members.

It argues there is a long-standing social contract where families look after their own without being paid to do so. The Government contends the floodgates would open if the families won, with financial implications running to hundreds of millions of dollars.

The Tribunal, however, agreed with the Office of Human Rights Proceedings, which fought the case on behalf of the families, that the cost was likely to be $32 million to $64 million. Its decision found that the policy infringed the Human Rights Act and the Bill of Rights Act.

Office of Human Rights Proceedings director Robert Hesketh says the Government has announced an appeal too soon, with a second finding due from the Tribunal.

The second part awaits the outcome of a yet to be scheduled remedies hearing, which could include rulings on back pay, guaranteed future earnings or damages for emotional harm as a result of the unlawful policy.

"We're going to be asking the Tribunal to urgently convene the remedies hearing and we're going to be asking the High Court to either dismiss the appeal either way, or alternatively defer the appeal until the remedies part of the case before the Tribunal has been dealt with."

He fears "legal jousting" over the case could go on for years, travelling through the High Court and, depending on the outcome, going on to the Court of Appeal and the Supreme Court.

The families

* Cliff Robinson and Marita, 42, and Johnny, 40. Microcephalic intellectual disability.

* Peter Humphreys and Sian, 20. Angelman's Syndrome.

* Sue Atkinson (who has died in the time it has taken to bring the proceedings) and Imogen, 31. Spastic quadraplegic, hypertonic cerebral palsy, dyslexia and dyspraxia.

* Jean Burnett and Stuart, 43. Spastic atheoid cerebral palsy, expressive dysphasia and throat paralysis.

* Laurence Carter and Sven, 45. Autism and epilepsy.

* Gillan Bransgrove and daughter Jessie Raine, 25. Spina bifida, kyphoscoliosis and congenital hydrocephalus.

* Lynda Stoneham and Kelly, 24. Intellectual disability and ADHD.

* Also called as a witness, Gary Somner with son Craig, 34. Cerebral palsy, tetraplegia and sight impairment. Stuart Burnett and Imogen Atkinson are also plaintiffs in their own right, claiming they, too, are discriminated against by the ministry's policy.

Imogen Atkinson now lives in care since her mother's death, as does Kelly Stoneham since her mother became unwell.

- NZ Herald

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