A family affair
Cliff Robinson wants payments for family carers to be his legacy.DENISE IRVINE
Cliff Robinson had it in his head to disappear, just like his wife, Mary, had done a few months earlier. It was the early 1970s, he had placed their two disabled preschoolers in care, he was drinking heavily, he couldn't see a future for himself or them.
A former seaman, he thought he'd simply find another ship to work on, get to Rio de Janeiro and melt away into a new life.
His daughter, Marita, scuppered the plan. She was probably not quite 4 and in the care of IHC in Auckland. Robinson went to visit her, maybe for the last time, and he remembers his girl as she ran towards him and shouted: "Daddy, Daddy, Daddy."
"I picked her up. That was the end of me. I got myself off the bottle. I stayed in New Zealand."
The next line hangs unspoken in the air. That Robinson has dedicated the four decades or so that followed to looking after Marita, now 45, and son Johnny, 42. Both were born with the neurodevelopment disorder microcephaly, and Johnny later became schizophrenic and an insulin-dependent type 2 diabetic.
Robinson, 75, tells his family's story in a cafe in Thames.
After he's finished his cup of tea, he'll pick up Marita and Johnny from Idea, the IHC service they attend each day in town, then they'll drive 17 kilometres up the coast to their home at peaceful Ruamahanga Bay. Or, as Robinson jokingly calls their little slice of the Coromandel, "the poor man's Riviera".
Robinson's like this – throws out quick one-liners even when he's describing the bleakest of times. He's articulate, political, media-savvy and educated in the wider world rather than school or university.
These skills are clearly the reason he's become a spokesman for parents seeking fair play and fair pay for their care of their disabled children. Today, he's providing more background on this and a glimpse of what it's like to look after Marita and Johnny, to be their cook, housekeeper, chauffeur, nurse, budget manager, entertainment organiser, advocate and more, as well as their loving dad and confidant.
The Health Ministry doesn't pay family members who provide their own home-based care; Robinson thinks this is wrong and he's been trying for years to get the work recognised.
He's been back in the news in the past week, delighted by a Court of Appeal decision which ruled that parents of disabled children are being unreasonably discriminated against by not being allowed to be paid carers because of their family status.
It's been a slow grind to get this far: Robinson and a small group of similarly affected families first won their case in the Human Rights Tribunal in 2010 (after a hearing in 2008). The Health Ministry – concerned about the potential for millions of dollars in extra expenditure – appealed. The action went to the High Court. The ministry appealed again. It went to the Court of Appeal. Each time, the tribunal's decision has been upheld.
This latest round may not be the last. The ministry may still take it to the next level, the Supreme Court. It has until June 11 or thereabouts to make the decision.
While the legal venues have changed, the parents' basic argument has stayed the same: It is discriminatory – a breach of human rights – that under ministry policy outside caregivers can be paid to look after their children, but family members cannot.
"We're not greedy," Robinson says. "All we're asking for is the hours that a stranger would give our kids. As it is now, if you can't look after your kids, the state will provide."
Robinson started down the legal track more than 10 years ago when he turned 65, and after 30 years on the Domestic Purposes Benefit (he got the single rate for care of sick or infirm) he went on to national superannuation.
Robinson saw an inequity in this. The DPB recognised the work he was putting in for his kids, the super didn't. "It [the DPB] was my pay for looking after Marita and Johnny. It ceased the day I got national super. But the super's for my retirement and I'm not going to be able to retire. I'm still working."On Monday afternoon in Thames, Robinson steps through a typical working day.
He's out of bed by 5.45am, snatches a quiet breakfast on his own. Johnny gets up around 6.30am and Robinson tests his blood sugar levels, gives him the first of his two daily insulin injections and the first round of medications for his mental condition and his blood pressure and thyroid conditions, as well as to suppress his sexual urges. Robinson says Johnny's toileting is not too good, either, an added pressure.
Johnny has breakfast, Marita gets up and she can get herself ready quite well. On weekdays, he heads off with them about 8am to the IHC centre in Thames.
He gets home about 9am. "I do the normal chores, give the house a bit of a spit and lick, do the washing – there's always washing – get into the garden, and if it's a nice day, I go fishing."
Fishing and gardening provide food for the table. It all helps. With Robinson's superannuation and his children's invalid benefit and disability allowances, they get about $900 a week. This covers the endless backwards and forwards to Thames, their food, clothing, trips and treats for Marita and Johnny, and all household expenses.
Some people have asked Robinson why he doesn't live in town and avoid commuting. But the peace and quiet of the coast suits Johnny better: he needs constant supervision.
After spending a few hours at home, Robinson drives 17km back to town to pick up the children at 3.30pm.
What he hasn't described in his daily routine is the sheer intensity of it. As he waits for Marita and Johnny outside the IHC centre, you get an inkling of this when he mentions they'd had a difficult morning. He's got a plaster on his hand, covering a wound caused after Johnny had a meltdown and bit him. "He a handful."
Robinson's also rather bizarrely clutching a large leek that he's just bought at the greengrocer's opposite the cafe. Always thinking ahead, he says it's to go with the stir-fried mussels he's planning for dinner.
Johnny rushes up, hugs his father, leek and all, and he apologises for the morning's episode several times, holds him tight. "I'm sorry, I didn't mean to."
Marita bustles up to him, wants attention, too. "Hello, Daddy," she says.
Robinson hugs them both. They cling to him. He speaks gently, introduces his Waikato Times visitors, admires Johnny's red sunglasses from the $2 Shop.
Another father is nearby, picking up his daughter from the same centre. He is Peter Philip, a retired Anglican minister who has known Robinson for 40 years, since his daughter and Marita attended the same special school in New Lynn, Auckland.
Philip comments that Robinson is a hero, "an extraordinary person".
"He's taken responsibility for his children rather than have them live in care. No-one could be more committed. He's given everything for those kids, and he's fought battles for others."
Robinson looks a tad uncomfortable and edges away. "I'm no saint," he repeats several times during the evening.
He's right, to some extent. He was living in Green Bay, West Auckland, when he woke up on the morning of June 15, 1970, to find his wife had driven off in the family car and left him with Marita, who was 3 1/2 and Johnny, who was 8 months.
When Marita was born microcephalic in 1967, doctors had bluntly told Robinson and his wife that their daughter would be mentally retarded and probably only live until she was 7. The experts thought the microcephaly had been caused by a prenatal injury and the chances it would happen again were almost nil.
Then Johnny was born with the same condition, and Mary – who was schizophrenic – struggled to cope. She was an Irish Catholic nurse who Robinson had met and married in Liverpool during his seafaring days. After she left the family, she eventually made her way back to Ireland.
They've seen her once since, when Robinson took the children to Ireland to see her. She didn't know they were coming, it was a huge shock, not particularly successful and there has been no subsequent contact.
At the time his wife left, Robinson was a self-described Kiwi joker from a working-class Onehunga family who'd had a rugged time during the Great Depression of the 1930s.
"I was a hard-case drinking seaman. I picked up my baby son and I didn't know where to start."
Mary, he says, had looked after the children, he'd gone out to work and gone down the pub with his mates.
He took a couple of days' leave after Mary left, then both children went into care (in different places). It was all he could do. "And I got back to the bottle and back to work."
Later came the plan of leaving them behind forever, dashed by Marita's cries of "Daddy".
The kids stayed in care for a while longer; Robinson got off the booze. When the Domestic Purposes Benefit became available in 1974, it gave him the opportunity to look after his kids full time.
Marita came home first, followed by Johnny, and for some years he also looked after Johnny's friend Tony, another disabled boy.
Robinson groans at some of the memories.
"They were all bed-wetters, I never had enough sheets and I had an old agitator washing machine."
The family moved to Waiheke Island, then back to Auckland, and came to Ruamahanga Bay about 10 years ago.
Robinson has also taken his children way beyond their home patch. Knowing it would be difficult for them to learn conventionally, he decided to make the world their classroom.
They've had extensive trips through Asia, Europe and many other places. Robinson's done this by careful money management and using the "few bob" his mother left him when she died. He says if you're prepared to travel a bit rough, stay in backpacker accommodation and eat at street stalls, you can almost live more cheaply than at home. "We've achieved miracles because we've been determined to do it."
A highlight includes meeting Pope John Paul II at a papal audience in Rome in 1995. Robinson shook hands with the pontiff, said "good-day", and John-Paul spent about 10 minutes with the family. "The old boy didn't want to stop talking to us."
The Robinsons have a photograph of this moment on their kitchen wall. When they get home from the pick-up at the IHC, Marita shows it to us, voicing her concern that she had her back to the camera and Daddy and Johnny got the limelight. "That's me," she says, pointing to the back of her head.
She also takes us on a little tour of her bedroom, where there is a box of Bride magazines, dolls and bling. Marita's a romantic, says her father, and she loves wedding dresses and pretty things.
Marita says she'd love to help a wedding dress shop, beaming at the prospect. She loves cats, too, and one of her first chores at night is to feed the family's pair. She volunteers for a couple of hours each week at the Thames SPCA.
The domestic routine continues as chatty Marita neatly chops the leek and an onion for the stir-fry, then steams the mussels open. Robinson lights the fire, their rambling home warms up. He talks, supervises, gently directs Johnny, checks his blood sugar level, and there is another round of medication due.
By 8pm or so, both children may be in bed, and Robinson may get some quiet time to read.Robinson says he and the other parents are not asking to be paid a lot for such care. They want $15 an hour and he envisages maybe five to six hours a day for Johnny during the week, eight to nine hours a day on weekends, less for Marita.
He's not sure how it will work out, how an entitlement will be assessed.
"We've won the battle but not the war."
But even the battle may not be over. A Health Ministry spokesman this week said it was considering the Appeal Court's decision, which raises "significant issues for government that are wider than the circumstances of this case".
The spokesman said the ministry had 20 working days to lodge an appeal, and any appeal would be decided between the ministry and Crown Law. He confirmed that estimated legal costs of $1.4m on this case were approximately correct. He said the ministry was "limited in its ability to respond [to questions] as legal action is still possible", and would not comment further on the likely figures if families were paid for this work.
The Appeal Court hearing in February was told that only rough estimates had been done on this. The figures varied from $17m to $593m, and the ministry also said it didn't know how many parents would want to take up the option of being a paid carer.
The ministry's concerns at that time included funding, the ability to monitor the quality of family members as caregivers, and the consequences of a family being reliant on the disabled person for income.
There has also been an underlying fear of "opening the floodgates" on demands for payments for similar family-based care affecting perhaps frail parents, a spouse with dementia, or similar.
Coromandel-based Green MP Catherine Delahunty has long supported the families' actions, and she reiterates that all they want is the same amount a stranger providing care for their kids would get.
Delahunty has spent time in the Robinson household and Robinson says she's the only politician who's looked at what it's like to do his job. He values her support enormously.
Delahunty understands the complexity of the issues around such payments, and she notes the concerns on setting boundaries on who gets paid for what. This would all have to be carefully worked through, she says.
"But in the case of family members caring for disabled adult children, a clear case of discrimination has been proved in three courts."
Delahunty says as a country we should start here, have the conversation about how we give support, and to whom, and what is the value of caring for people.
Delahunty adds that not everyone's in a position to look after their disabled children at home, but it has worked for the Robinsons. "They have had some great adventures and a real family life, and have saved the state a lot of money."
She doesn't think too many extra people will be lining up to take on this responsibility.
"It's hard work, a daily challenge, and often such people are sole parenting.
"I don't think many of us could do it [give 40 or more years of their life, as Robinson has done]. I don't think I could do it. His dedication is something else."
Robinson knows the time will come when he won't be around to look after Marita and Johnny. Johnny will need specialised care, a niece by marriage will keep an eye on Marita. But he doesn't look too far ahead.
"You live the day, do the best you can. You get one go at it. For me, the horizon is getting a bit closer."
He wants payment to family carers in his situation to be his legacy.
"Recognition for my life's work."