When it doesn't pay to care

Jessie Raine, Jean Burnett and Stuart Burnett outside the High Court in Auckland. Photo / Natalie Slade

Seventy-four-year-old Cliff Robinson arrived at the Auckland High Court on Monday.

He'd driven up from Thames with Marita, his 43-year-old daughter, who had put on some lipstick, painted her nails and was carrying a little black handbag for the big day.

Her brother Johnny, 41, had to stay behind in day care because he has the potential to get quite rowdy and spin out of control, but Marita sat quietly next to her dad, or daddy as she still calls him, in the row of seats at the back of Court 8.

She looked as if she was hanging on to every word of the complex legal arguments being outlined by the Crown but in reality she didn't understand any of it.

She has microcephaly (a neurodevelopmental disorder) and at lunch she accidentally tipped a drink in her handbag, though she seemed pretty upbeat when she mentioned this. She'd been to the IHC ball in Tauranga, she'd said, eyes shining, where she had danced the night away.

Back in court, every now and then her dad Cliff would sigh, rub his eyes or mutter at what he was hearing, as did Peter Humphreys who was sitting a few seats along in the back row.

Humphreys had also driven up from the Waikato but he didn't bring his daughter.

Sian, 22, has Angelman Syndrome, a genetic disorder affecting the nervous system and causing a range of problems including serious developmental issues.

She is a strong young woman and her behaviour is full-on.

The Robinsons and the Humphries are two of seven families who in January won a landmark case in the Human Rights Review Tribunal, only to find themselves shunted to this higher court where the win and its implications are being contested by the State.

During the hearing back in 2008, the parents argued Ministry of Health policy prohibiting them from being paid to perform the hours of care their adult children had been assessed as needing was discriminatory because the ministry was happy to pay strangers to come into their homes and perform those hours of care.

They argued some of the care their adult children required was extremely intimate and the standard of caregivers they had been sent, one after the other, was so dubious they preferred to do it themselves.

The case was also about the freedom of choice for some of the adult children who wished their parents to be their caregivers and thus be paid the money allocated for their care.

The families won hands down and were elated.

Disappointment soon followed when the Crown announced it would appeal and that case is now underway in the High Court.

The Crown says the Tribunal made manifest legal and factual errors and that a lot more is at stake than these seven families.

There are huge fiscal implication, they say. The Ministry of Health would have to change its whole framework of disability support services and the cost could be up to up to $593 million a year because of all the family members who would come forward, and there would be other flow-on effects.

The Office of Human Rights Proceedings, however, estimated the costs would only be $32 to $64 million because very few parents or family members would be willing or able to provide the very high level of care these adult children require.

In court either judge Raynor Asher or the two lay people sitting alongside him from the Human Rights Review Tribunal - Jacquie Grant, a high-profile transsexual once dubbed the West Coast's much-loved "Tranny Granny" and Patsi Davies of Hamilton - would often ask questions of Crown lawyer Martha Coleman.

Coleman explained the Ministry's argument that a social contract existed where people look after their own, and pointed out the policy in question was about filling gaps in services for people with disabilities.

It was not about providing a wage for families - that was the business of the Ministry of Social Policy.

For families who opt out of that social contract, for whatever reason, the state pays for the services to fill those gaps.

But it does not pay when a parent, spouse or other resident family member wants to care for the person themselves.

"The policies themselves, the schemes themselves, are designed to provide services, they're not an employment scheme for family pay to care Cliff Robinson with his intellectually disabled children Johnny and Marita, who he cares for full-time, at their home in Thames. Picture / Natalie Slade

If families could be paid to provide care many would ask to be paid for the support they now provid purely out of love and affection.Crown lawyer Martha Coleman

members, and that would be to change completely the nature of the scheme away from what it is..."

People are rational human beings who would respond to economic incentives, she said.

The ministry has to operate on a budget, and fiscal sustainability was an issue.

If families could be paid to provide care many would ask to be paid for the support they now provided purely out of love and affection, she said.

Another issue raised was the risk families would become financially reliant on the income, which could impact on the independence of the disabled person.

She said the system was a good one and key services existed to fill the gaps.

Outside court, Cliff Robinson had said how rosy they make the system sound, to which Peter Humphreys had laughed ironically and said "yeah, I want some of that".

His family has tried many services which have not worked for Sian and he despairs at the quality of caregivers she has been sent.

They are so low paid and anyone can walk in off the street and get a job, he says.

In his affidavit to the previous Tribunal hearing, Humphries wrote about a particular incident which had caused distress.

An agency had sent a small, thin woman with a hat and glasses.

"I turned my back for a moment and turned back to see her lying on the floor with Sian on top of her trying to remove her glasses... [Sian doesn't like glasses]

"I reflected overnight and decided I couldn't cope with the anxiety and responsibility of trying to protect the safety of the carer while she was supposed to do the caring."

Jean and Stuart Burnett arrived at court on Tuesday.

Stuart made a bit of an entrance. A trolley and chairs had to be moved out the way as he slowly but deftly parked his motorised wheelchair under a table at the back.

Stuart, who has cerebral palsy and has very limited movement but a keen intelligence, is also a plaintiff in the case.

He wants his mother as his paid caregiver - this is his choice, he says.

In his affidavit to the Tribunal, he had explained his views on residential care.

"Though the resident's basic personal and hygiene needs are met - their other needs as human beings are sometimes neglected, from my observation...

"They seem to lead restricted, stifled lives with a loss of control over their own situation. This is not a choice that I would want to make for myself."

And in his home, which he half owns with his mother, when cared for by contracted caregivers, he said this: "I have disliked the experience because often I have sensed that they cannot cope with my disabilities".

His mother Jean is the oldest plaintiff. She is 76 now and has cared for Stuart for more than 40 years.

She knows his body language - she can read him, understand him.

Outside the court room, when she was talking about the transient and intrusive nature of the caregivers who have been through their own home, Stuart, who can't speak, lifted his arm to his throat.

Jean immediately translated: he was trying to indicate the case in the news recently about a caregiver who slit the throat of a tetraplegic.

That case might be extreme but the point is Stuart is very vulnerable, Jean says.

Not only can he be taken advantage of but he can easily choke and die if not fed properly because of his swallowing difficulties.

She won't give up this battle for what she sees as justice until she's in a box, she says.

Life at the moment, though, is about putting one foot in front of another and hoping the van doesn't get towed from the three hour disability park near the Court.

"[We're] trying to keep other people's rules, and it's impossible because they don't fit us."

This case was brought under a section of the Human Rights Acts which allows citizens to challenge the Government on policies which may breach human rights.

It is the first such case to go to the High Court but regardless of who wins, it can be appealed again and could to back to the Court of Appeal and then the Supreme Court, which could take years.

One of the original plaintiffs died in the time the case took to get to the Tribunal hearing.

The case continues next week.

JEAN AND STUART BURNETT
76 and 44
* Jean has cared for Stuart, who has spastic atheoid cerebral palsy, all his life.

"I have never allowed him to become a professional wall-starer ... Stuart does not just need someone to wash, feed and toilet him ... he also needs someone who can enable him to live his life and live his dreams."
Jean Burnett

CLIFF, MARITA AND JOHNNY ROBINSON
74, 43 and 41
* The children both have intellectual disabilities. Johnny also has schizophrenia and diabetes.
* When in care, Johnny needs two staff members all the time.
* Cliff took the the children out of homes when they were toddlers and has cared for them ever since.

"What would cost the Government less: paying parents as caregivers, or meeting the cost of institutional care full-time for their children?"
Cliff Robinson

PETER AND SIAN HUMPHRIES
* Sian, 22, was born with Angelman Syndrome and has very high disability support needs.
* Peter has tried many caregivers but has experienced years of frustration.

"I can't get my head around why the Government has to make our lives that much harder. They cannot provide an adquate system of regular personal care for Sian - it just isn't there."
Peter Humphries.

GILLIAN BANSGROVE AND (DAUGHTER) JESSIE RAINE
* Jessie, 26, has spina bifida, is partially paralysed and has other disabilities. She has very high support needs.

"I made my views known to the agency about their proposed plan to provide a team of caregivers for me ... I did not want that arrangement. It only lasted two weeks before I had an accident. I do not want strangers looking at my body - the care I need is intimate and I want some control over who provides it."
Jessie Raine

Quotes from affidavits presented to the original Human Rights Review Tribunal