The right to care

By Catherine Masters

Stuart Burnett sits in his room, his computer certificates on the wall. There's a big deck outside to accommodate the motorised wheelchair he spends so much time in.

As Tiki the old blind dog wanders around, Mum Jean does the talking. Stuart can't speak, though he can communicate using his computer.

It's a long process, though. Jean chats to Stuart all the time and he'll move his head or he'll laugh - he can laugh and has a great sense of humour.

Don't ever think Stuart can't understand, because you'll say something and the next second he's laughing away.

Over their 42 years together Jean, now 74, has learnt how to understand him, through glances and body language. She knows what he wants, whether he's agreeing or disagreeing, whether he's happy or frustrated.

So while it takes a long time to write, Stuart eventually comes up with a sentence for me which is wry and funny and sums up five long weeks in his wheelchair watching the goings-on in a courtroom.

He's typing his sentence on his talking computer in the Glenfield house where he lives with Jean, who takes care of all his needs.

So far he's written "everything in the garden ... "

I'd asked what he had made of Ministry of Health officials at a hearing in Auckland of the Human Rights Review Tribunal, officials who had used words such as "frameworks" and "initiatives" and who had talked about the strategies and supports in place which benefit the lives of disabled people.

Jean and I moved on to talk about other things in the time it took him to finish. I guess he's used to people's attention wandering, though this 42-year-old with severe cerebral palsy is a computer programmer and sharp as a tack.

Stuart understood every word at the Tribunal hearing. To him and Jean, the health officials on the stand seemed to live in a world tangled with jargon and policy.

Part of his reason for turning up every single day was to remind them that this landmark case is actually about real people, like Stuart, and the dedicated mother who has cared for him for so long.

Stuart gave evidence at the hearing one day, using his portable communication device, but mostly he sat at the back, head sometimes drooping and at times jerking because, unlike his intellect, he has little control over his body.

Stuart's full sentence to me in his bedroom went like this: "Everything in the garden is p [perfect]. Yeah, right."

He then let loose a laugh which, if his body was free of its constraints, would have been one of those big, guffawing laughs. No explanation was needed. Stuart had clearly given a "yeah, right" kind of laugh.

What he means is, things are far from well.

At issue for Stuart and the eight families of profoundly disabled adult children who brought this case, is a Ministry of Health policy they call callous and discriminating.

The policy goes like this: If you are disabled and are assessed as needing so many hours of care a week, the state will pay someone to provide that care.

But if that someone is your parent, spouse or any other family member who lives with you, there is no payment.

In other words, the state will pay a stranger but not your own family, no matter how personal the care required.

This is discrimination, the families say. They want the paid hours of support their children have been assessed as needing to be paid to them instead of to strangers.

The Ministry of Health refuses. It argues this case is much bigger than the concerns of these eight families. If they win and the policy of not paying families is overturned, the floodgates for other families to claim payment would be opened with costs of anything between $17 million and $593 million, though Human Rights says the figure would be $40 million a year, if that.

The ministry went further. If the families won, the consequences would be significant and immediate. The policy would be void and the ministry's entire framework for disability services would crumble.

The claim, they say, in fact challenges core government policy which underlies not only the entire social welfare system but also other aspects of the inter-relationship between the state and families.

The guts of this argument is that a long-standing "social contract" exists for families to look after their own and not to be paid to do so.

Hang on, says Robert Hesketh, director of the Office of Human Rights Proceedings [an independent arm of the Human Rights Commission] which has brought the case on behalf of the families.

Why shouldn't family members be paid money which has already been set aside and budgeted for, but which is not paid out because the carers in question are family members?

Hesketh made the call to take on the case - and it has taken seven years to get here - as complaints to the commission built up.

The ministry's policy is wrong, arrogant and harmful, he told Weekend Review.

"I was struck by the incredible stories of each of the plaintiffs, how you've got people that have been profoundly disabled all their lives being quietly, lovingly and courageously cared for without any real recognition."

These people are being treated differently to others in society and that's discrimination, he says. If you are disabled because of an accident, ACC pays family to do the caregiving and has done so for years.

And it's not like these families are asking for the world, he says. The extra money would help and would improve difficult lives.

Details of the medical issues and needs of the adult children are suppressed but they are many and complicated.

Some are intellectually disabled and some, like Stuart, are physically disabled. All demand very high levels of care and for some this means the most private of matters must be attended to by other people.

For these adults, their parents are the ones who have always done this for them.

Their parents, some of whom who have given up well-paid jobs to do so, say the care their children require is far beyond that given by parents of most children.

They also concede that not every parent can, or even wants, to do what they do and that not all disabled people want to live at home or be cared for by their parents.

But these ones do, some of them desperately.

A point the families made repeatedly throughout the hearing [which finished on Thursday] is that though they have been offered a variety of supports by agencies, via the ministry, these have not worked for them.

All have complaints about the caregiver workforce - the paid strangers sent into their homes by agencies to perform the hours of care. This workforce is transient and low-paid.

Sometimes caregivers just don't turn up. Sometimes they snoop. Sometimes they are perfectly nice people but do not have the training to deal with such high needs.

Mealtimes for Stuart, for example, are protracted and precarious because he can easily choke. Another child needs frequent nursing care. While her mother is a registered nurse, supplied caregivers are not.

Finding the merry-go-round of carers exhausting and unsafe, they finally opted to do it themselves.

An alternative would be for these adult children to go into residential homes, or supported independent living. But some have had negative experiences. When Jean needed respite, Stuart was put into an old people's home. Other families talk of bullying and abuse which has taken place in the past.

Besides, these are adult children who want to live at home with their parents but who do not want their parents used for what Jean and Stuart describe as slave labour.

During the hearing the ministry said the "social contract" was the fundamental premise underlying the policy to exclude payment to family members.

The social contract goes so far back "it is just one of those foundation principles which is taken for granted in the basic articulation of the role of the state versus the role of the individual and the family unit," said Crown Counsel Martha Coleman.

"It is an 'of course' principle - in the sense that 'of course' the state does not pay for a parent for the care that they provide in raising their children to adulthood."

The ministry stressed its role is to fill gaps in support only, and that whatever the debate around the edges, this underlying principle remains constant.

"The state provides support. It does not usurp the functions of families and it does not employ families to perform those functions, because those functions are not the responsibility of the state."

The plaintiffs argue the current social security system does have a precedent for paying families - such as the DPB and Working for Families supports, and ACC.

They say the ministry's so-called social contract is no more than a vague, ill-defined notion put forward as justification but which does not stand up to scrutiny.

Worrying, for the ministry, is that the case was brought by the director of Human Rights Proceedings. It means the case is far wider than just eight families - because the decision the Tribunal reaches will not be limited to just these families. It will apply to all people eligible to receive services and these families are but a few of 30,000 current recipients.

There are complex ethical and practical concerns, too. Could people with disabilities be locked into a relationship of dependence?

Would family members feel pressured to become contractual caregivers? And would people with disabilities feel obliged to agree to a family member being their contractual provider?

Paying family caregivers would provide a direct cash incentive to families, they say, and the likely increases in cost from families asking to be paid for what they now do unpaid would make the ministry's disability framework fiscally unsustainable.

The losers, they say, would be people without "natural supports" - the most vulnerable.

The ministry is not actually funded by Government to provide financial assistance to these families, says Coleman.

"The ministry, in fact, would be in breach of its obligations if it used its funds for that purpose."

There have been exceptions to the policy, though, and quite a few, for some of the reasons the case has been brought - such as the lack of trained carers, but also for cultural reasons.

Some of the families in the case have qualified as exceptions, though others, like Jean, have not.

The ministry says it had not realised agencies had made these exceptions and, pending the outcome of this case, will terminate the payments.

Human Rights discounts the argument that payment would provide incentives for families to keep their disabled family member at home.

The demands are large and many families would not have the emotional, physical or other resources to do it, payment or not.

"They [the plaintiffs] are visionary, deeply loving and committed parents who take on the challenges of caring for their adult children with high and complex needs in a society that makes invisible their heroic work and pushes them and their children to the largely hidden fringes of society."

Jean thinks the ministry has overcomplicated everything just to make it hard to undo - and here's what Stuart wrote at the end of the hearing summing up his thoughts on the ministry's case: "I'm waiting for the effect on global warming."

OUTSIDE the hearing one day, solo dad Cliff Robinson spoke quietly and tiredly, daughter Marita leaning on his shoulder. She is 41 and has microcephalic intellectual disability.

Son Johnnie is 39 and has the same disability, though his needs are higher as he also has schizophrenia. He was unwell and did not come to the hearing.

Cliff, from Thames, has cared for the children on his own since his wife left in 1970. He is one of the people who has received payments, as exceptions to the policy, and faces the funding being stopped.

He thinks he has saved the government huge amounts of money by not putting the children into IHC homes over the years.

"The number of times I've been offered a wrap-around package [for Johnnie] and just by my maths the wrap-around package would be $210,000 a year."

The children don't want to go into a home, he says. They go to day programmes and love to come home and flop down in front of the television. They can take all the money away and he'll still look after his kids, he says.

I ask Marita if she wants to move out or have her dad look after her at home and she replies by telling her father she has a sore hand.

She gets arthritis these days, Cliff says. If they go into a home, they would miss out, he says. What about the love? What about the hugs?

Every morning Marita comes out of her room and gives her dad a hug.

He says to her: "You're a lovely girl, aren't you love?" and kisses her sore hand.

Then he talks about the shutting down of institutions, care in the community and the residential homes which have been set up.

He asks why parents who still care for their children at home have never been recognised.

"This is the final part of the circle, it's why this [case] is so historic. And what a day that will be. I think we've got a powerful case."

The Tribunal members are likely to take weeks, if not months, to decide just whose case is the more powerful.

THE PLAINTIFFS AND THEIR CHILDREN
* Cliff Robinson and Marita, 41, and Johnny, 39. Microcephalic intellectual disability.
* Peter Humphreys and Sian, 19. Angelman's Syndrome.
* Sue Atkinson (who has died in the time it has taken to bring the proceedings) and Imogen, 30. Spastic quadraplegic, hypertonic cerebral palsy, dyslexia and dyspraxia.
* Jean Burnett and Stuart, 42. Spastic atheoid cerebral palsy, expressive dysphasia and throat paralysis.
* Laurence Carter and Sven, 44. Autism and epilepsy.
* Gillan Bransgrove and daughter Jessie Raine, 24. Spina bifida, kyphoscoliosis and congenital hydrocephalus.
* Lynda Stoneham and Kelly, 23. Intellectual disability and ADHD.
* Also called as a witness, Gary Somner with son Craig, 33. 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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