Written By: - Date published: 1:05 pm, January 23rd, 2010 - 25 comments
Categories: health, national/act government - Tags:

This is how Health Minister Tony Ryall announced the Government would be appealing the court decision to try to get out of paying people for caring for disabled children:
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Better support for family caregivers recommended
Press Release by New Zealand Government at 12:05 pm, 22 Jan 2010

Health Minister Tony Ryall says the Government is considering ways to better support family members who care for their severely disabled adult children.

Today the Health Minister has announced the release of a report from the National Health Committee – “How Should We Care for the Carers, Now and into the Future? Manaaki tangata” – which the Minister received just before Christmas.

“While the NHC report does not recommend payment for family carers, it recommends a range of actions to provide better support for them which the Government will consider” Mr Ryall says.

“Late last year the Government also began looking at options to expand the individualised funding scheme and to provide better support for family carers.”

The Health Minister says the Solicitor General has advised him of his decision to today appeal a January 8 decision by the Human Rights Review Tribunal regarding family members who care for their severely disabled adult children.

“The Solicitor General strongly advises me that there are very significant legal issues about the decision that need to be examined.”

Mr Ryall says all New Zealanders have great admiration for the families who face the challenges of caring for a disabled relative.

“Supporting family carers is an important issue for New Zealanders. However it’s a complex matter balancing the interests of an individual’s autonomy, family responsibility and government contribution.”

Click on the link below for the National Health Committee report “How Should We Care for the Carers, Now and into the Future? Manaaki tangata”
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The shorter version: “We don’t want to pay you. Here’s some waffle to pretend we care”

This is the minister that John Armstrong named politician of the year.

25 comments on “Cowardly”

  1. swimmer 1

    That’s a shocker! I hope they lose that appeal!

  2. RedLogix 2

    The core of this one is the line:

    However it’s a complex matter balancing the interests of an individual’s autonomy, family responsibility and government contribution.’

    The problem is that with modern medicinal intervention far more severely disabled children survive than was the case generations ago. Once upon a time doctors and families quietly allowed those born with hopeless disability to expire naturally of their own accord. Most would not see out their first birthday, as in fact happened often enough for otherwise healthy normal children. High infant mortality rates were a fact of life.

    But in modern times we have a different attitude towards this, and we expect every child born to survive. Unfortunately this expectation, while laudable in general, places a stupendous burden onto a small minority of parents.

    One of my children is one of life’s special cases. Not complaining… mostly she gets along just fine. But some years ago at a Christmas party for the local “Early Intervention” group, with a room full of disabled kids and families, I recall seeing one mum whose little boy had “Cats Cry” Syndrome. In that room, full of special cases, her boy was the ‘freak of freaks’. (Forgive me putting it like that, but it’s how I remember it.) All I remember was seeing the look of quiet despair in her eyes.

    If as a society we demand that these children should live, then as a society we have a responsibility to pick up on the consequences. That kind of unsupportable burden crushes, not just parents and siblings, but in the long run … families themselves.

    • QoT 2.1

      “hopeless disability”? Way to let us know you get to judge the value of human lives you deem “lesser”, RL, and make the call on whose life is worth living.

      • RedLogix 2.1.1

        Way to totally mis-read someone QoT. Generations ago the disorder my daughter was born with would have been ‘hopelessly disabled’. We simply would not have been able to keep her alive more than a few months.

        But as I was pointing out… things have changed.

        • QoT

          “those born with hopeless disability” … “unsupportable burden” … yeah, real compassion and absolutely no judging of the quality of life of people with disabilities whatsoever going on there. Plus a wonderful equating of high infant mortality with disability, because perfect “healthy” children of course never die from disease or malnutrition or anything.

          This case actually has nothing to do with “demanding” children with “hopeless disabilities” survive and everything to do with parents being forced to do something for free that strangers would be paid for because of the expectation that there is a parental duty to do so. It’s about fucking discrimination (hence, you know, the HRT actually finding in the parents’ favour), not Having Pity On Those Poor Suffering Angels Of Compassion.

          • RedLogix

            I’ll re-quote myself:

            Once upon a time doctors and families quietly allowed those born with hopeless disability to expire naturally of their own accord. Most would not see out their first birthday, as in fact happened often enough for otherwise healthy normal children.

            Try reading it properly rather than skimming for your preconceived notions. I’m stating exactly the same point, that pefect ‘healthy’ children would often die of diease, accident or malnutrition… that high infant mortality rates were a fact of life. (As was a tragically high maternal death rate too… but that’s another story.)

            In generations past most severely disabled infants never made it past infancy because we didn’t have the ability to keep them alive… regardless of how much we valued, loved them or cared for them. If they survived birth doctors and families often did as all humans had been doing for tens of thousands of years, and allowed them to die quietly… because there were no other good options. That’s just how it was.

            Nowadays we can and do choose differently. And there is rightfully an expectation from society as a whole that we should value them exactly as any other child. My point is of course that along with this changed expectation, logically comes a responsibility on society to assist with the consequences… because however much you want to pretend otherwise, raising them is one hell of job most people would never willingly choose to do.

            Frankly QoT… I really fail to see what your point is. You seem to have completely and perversely misread me.

          • IrishBill

            Would you please just quit with the language policing for a bit, QoT?

  3. BLiP 3

    “Late last year the Government also began looking at options to expand the individualised funding scheme and to provide better support for family carers.’

    Vouchers, anyone?

    Heh! The captcha = “survive” – yeah, if you can, little children.

    • QoT 3.1

      They’re not “little children”, BLiP, this case actually deals with adults who have disabilities and are being cared for by family members, often parents (hence the use of “children”).

    • Rex Widerstrom 3.2

      Why would vouchers be a bad thing (assuming that’s their intent) provided they were:

      a) of sufficient value and
      b) redeemable for the things carers need?

      After all, money is just a voucher we’re given in return for our labour, redeemable for capital items and services we require.

      • BLiP 3.2.1

        Surely, you jest?

        In this instance, a voucher system would inevitably dissipate money meant for health care into unnecessary bureaucracy and padding the pockets of foreign-owned private “service providers”. Less money spent on the core purpose, more leaving New Zealand never to be seen again.

        • Rex Widerstrom

          No, I jesteth not 😀

          Money meant for health care gets wasted on unncessary bureucracy anyway. Some of it gets given to foreign owned service providers now.

          My point is that we shouldn’t divert public atention onto how it’s paid for, which will quickly confuse many and bore most, but that the focus should be on what we’re paying for (including how much value we’re getting for our dollar / voucher / bright shiny shells).

          I don’t care if health is provided by the government or private interests provided it is of good quality and readily available. I admit that the profit motive generally detracts from both quality and quantity but that points to poor negotiating and monitoring on the part of those holding the purse strings.

          I didn’t need to hire the government to build me a house, I hired a private profit-driven builder but negotiated a price I was happy with, closely monitored the work, enforced the contract I’d signed (such as when they “forgot” the insulation) and ended up with a sturdy building at what is generally considered to be a pretty good price. If government were in my position they’d have agreed to pay $1000 per nail, not paid attention when inferior cement was being used, and then instituted an inquiry five years from now when the whole thing collapsed on their heads.

          In this particular instance we want carers of adult disabled people to be adequately supported but without unnecessary burden on the taxpayer. The mechanics of making that happen interest me far less than does achieving the outcome by whatever means.

          • BLiP


            I don’t care if health is provided by the government or private interests

            . . . the crux of our differences. I care deeply who provides health for I see the equitable provision of at least minimum health services as a human right and, thus, a function of the state. Just because there may already be bureaucratic waste, doesn’t mean we should have more of it, just as the fact that “shiny shells” are already being shipped off-shore doesn’t mean we should ship more. In fact, as you say, there should be efforts made to reduce both these things via increased vigilance on the part of the funders and, perhaps, education to bring along local providers.

            But, yes, how we ensure “carers of adult disabled people to be adequately supported . . . without unnecessary burden on the taxpayer” is the real issue. I would suggest that the way forward is a reconsideration of existing priorities (i.e., eliminating billion dollar subsidies and replacing them with a carbon tax, and increased investment in KiwiSaver / Cullen Fund activities, for example) could provide an immediate injection of funds along with creating future “income streams”. Another possibility would be diverting funding for the million-dollars-per-kilometre cycle track developments as announced to provide interim funding while a proper discussion takes place. Instead, National Ltd® ignores the realities of life for the most vulnerable in society and uses the opportunity as yet another vector for its privatisation agenda.

            However futile and naive my contribution has been, I willing to bet more thought has gone into our wee exchange than National Ltd® has given to the entire issue.

            • Descendant Of Smith

              My observation of the contracting out of caring for instance to private enterprise ( although some masquerade as NGO’s) has simply been the establishment of further additional layers of bureaucracy and in many cases a poorer service with less paid and less well trained staff.

              Health used to pay something like $22-00 per hour for caring. For staff working for the DHB’s they get pretty much all of this. For those working in the NGO / Private sector the organisation takes a cut before it gets to the workers who generally get minimum wage or not much more..

              They also know that for the NGO’s staff in particular that those staff often put in lots of unpaid hours.

              I don’t think much has changed recently in this regard. Someone might have more up to date figures.

              There are some good agencies with some good staff but equally there are some pretty awful ones as well – particularly in small towns where the monitoring of these contracts can be pretty feeble.

              I’m not sure, apart from a few health staff how much money is being saved.

              Anyone would think that private enterprise doesn’t have bureaucracy and centralised control. Ever tried to get your local bank staff to approve a loan, ever get Noel Leemings or Dick Smith to give you credit or even price match a product..Ever tried to get a local branch manager of anything to depart from the rules. There’s plenty of bureaucracy around.

              I don’t bank with ANZ but I did think their idea of selling the branches to be owner managed was positive. I’m not sure how it went. PSIS does a good job in giving managers some autonomy though.

              • BLiP

                Arrggghh!! Don’t get me started. Its actually Labour that needs a rocket up the arse for those DHBs!! What a massive, massive waste of money that would be better spent on vote Health. Really, what actually is wrong with a strong, well run Department of Health? Managers, I guess. I blame the suits, although the health professionals themselves were as much a part of the problem as well.

                What a shambles we’ve been left with; I wonder if that was the plan all along.

  4. Draco T Bastard 4

    Ah, so NACT want to introduce more bureaucracy to avoid paying people for the work that they do. And which will, most likely, cost even more. I suspect they’ll be going for the privatisation route as well to truly fuck things up.

  5. Bill 5

    What I picked up from the parties advocating payment was this. That relatives should be paid a market rate as a market rate would apply to ‘others’ who took up the role of care giver.

    Which is good.

    But then, what about parents being paid to bring up and care for children at a market rate that would apply to ‘other’ raisers of children.

    Don’t get me wrong. I think the second scenario is good too. But if the government is afraid that a) will lead to a succesful argument for b), then they have to appeal a) and win.

  6. prism 6

    When you read responses like QoTs its very clear how hard it is to deal compassionately with this problem. Every sperm is sacred to many people. If there are children born with devastating disabilities that require a full-time carer to do everything for them, guess who does that? Probably the family and it is fair and humane for families to get help and relaxing time away also help with the devices used, wheelchairs, special furniture, houses with ramps etc. The government love to leave families coping on their own till they drop, especially if they can’t advocate for themselves well.
    The obligation they feel to protect this person who may never have any way of supporting themselves, even communicating, may be futile or admirable. Christy Brown’s mother saw intelligence in his eyes and found a toe that obeyed his brain, he wrote a book able to express the thoughts previously locked in and I think got married though he died relatively early. Think Stephen Hawkings!
    But also the desire to continue having children likely to be disabled is a problem. Some people do not want to limit their offspring despite each child being at least moderately disabled.
    And bleeding hearts hate talking about it or even naming the problem. Yet in the end one family will receive millions of dollars over the lifetime of the child then adult, in support, relief carers, mechanical devices, food and clothing, and who serves the disabled person all this time giving up their own life choices? And who pays? How big is the public purse meant to be?

    • RedLogix 6.1

      You make some valid points.

      As a parent I didn’t choose to have a disabled child. Once she had arrived we didn’t have the choice, nor would have we wanted to ‘send her back’. She was ours and we did our best. Things turned out better than anyone expected. But despite that… I wouldn’t choose willingly to do it again.

      We had thought to have maybe another child or two, but we could never bring ourselves to risk going through the same thing again… so we didn’t.

      You are right. This is not a simple matter, and I for one do not have any easy answers.

  7. Descendant Of Smith 7

    How big is the public purse meant to be?

    It’s not clear whether you are talking about the public purse as the tax take or whether you are including aspects such as charity, the loss of income by caregivers, and so on. Are those things not also part of the public purse – money the public pays or sacrifices for the care of these people.

    The public purse in that sense is as big as it needs to be. It’s the equitable distribution of the purse that is the problem at the moment.

    The real question is what as a society do we value.

    The trouble is if you already see people with disabilities separate from our families and communities then you’re starting from a wrong premise. You only considering their value ( or lack of value (cost) ) to society in financial terms.

    Go to a Special Olympics or engage in a conversation with someone with Downs Syndrome – they’ve as much to add to our community as anyone else as do those who care for them. Does laughter and happiness and achievement within the realms of someones capability not count in our society.

    Of course we have those that believe that all anyone needs to do is undertake some training and better themselves – apparently we have a unique population distribution curve in NZ where we go from significant or severe disability to perfectly functioning highly motivated adult.

    If we were to cull part of the population I rather see lawyers culled. I’ve never ever had any satisfaction from one.

    Genetic testing is also problematic as this only determines the defect – not the consequence of the defect. Take something like neurofibromatosis – from memory most with this genetic condition will not have any problems, 10% some impact and 5% severe. 50% of the population with this is from being inherited and the other 50% spontaneous.

    Would you abort on this basis? There are plenty of other disorders with similar possibilities.

    The one part of the post I agree with is that we don’t talk about these issues enough. More dialogue would be great – we then might get some more polices driven via people’s will instead of political convenience.

    It no different with our aging population – we are going to have to face the same issues here with care and medical treatment – the good news is that there will be heaps of houses on the market. Ask the same question about your own mother / father / family member once she needs care – what do you think should be done with her?

    • prism 7.1

      captcha executes!
      The heat that rises from any type of debate about where the limits should be drawn on everybody’s rights to draw on the welfare state when they have need, must add to the climate change. And one soon goes from looking at the situation to wider issues and expanding ever wider until sure as eggs we will hear the Nazis and Hitler mentioned.

      And still there will be no acceptance of any limiting of risk and no reasoned debate or decisions to formulate a plan.

      • Descendant Of Smith 7.1.1

        captcha executes!

        If by that you mean that’s the sort of programmed response you were expecting then you’re just being a dick.

  8. handle 8

    Good discussion.

    “what about parents being paid to bring up and care for children at a market rate”

    I think you have identified the main fear, Bill. But how hard can it be to keep it for only those people who are assessed by the current systems as being eligible for long term disability support?

    Waking every couple of hours to attend to your 40 year old child each night is not “natural”. No surprise that the quality of workers is not that great when you can get paid more at a supermarket checkout. Vouchers might actually work if it means disabled people getting more power about who they hire and fire.

    ACC already manages payments to families like these without a murmur. Maybe the government is not confident in the ability of the Health Ministry? Judging by the Tribunal’s response to their pathetic arguments, maybe they have a point. Read the whole thing here –

  9. tc 9

    The sad fact IMHO is there’s heaps of funds in the health system it just doesn’t find its way to the coalface as there’s far too much beauracracy, replicated systems/functions across all the DHB’s sucking up the dosh.

    Clark’s govt missed a golden opportunity to restructure them as she keep choosing dud health ministers and left it too late to appoint a decent one in Cunliffe….but at least she had decent ministers available once she ran out of peers.

    So contrast with Ryall who has done nothing except throw more beauracracy at it and then hides behind the AG rather than front up…….cowardly/ineffective/counterproductive and he’s one of the better ministers………oh dear.

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