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Speaker: Of rights, choice, money ... and buses

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  • Russell Brown,

    Thanks Philip. Nice to have you here.

    Auckland • Since Nov 2006 • 18957 posts Report Reply

  • 3410,

    You're right. It was a bad decision to exclude coverage and it's sad that they don't seem to get it, even after having it explained by the HRRT.

    Auckland • Since Jan 2007 • 2618 posts Report Reply

  • Graeme Edgeler,

    On any decision by the Human Rights Review Tribunal that a government policy or law is discriminatory, the Government will always appeal. National or Labour ... reviewing a policy from their government, or from a government of a different stripe ... they will always appeal.

    Wellington, New Zealand • Since Nov 2006 • 3009 posts Report Reply

  • 3410,

    Under what circumstances would they concede?

    Auckland • Since Jan 2007 • 2618 posts Report Reply

  • recordari,

    Money?

    Great post Philip. I just read through your trust page also. Excellent work. Keep it up.

    AUCKLAND • Since Dec 2009 • 2607 posts Report Reply

  • Graeme Edgeler,

    They won't.

    1. The Government does not take the HRRT seriously.
    2. The Government likes to claim that it is at the forefront in human rights the world over. It can't credibly do that if there are findings that its laws or policies are discriminatory or otherwise breach human rights.

    The government may concede or accept findings that individual breaches of rights have occurred - a particular employee was discriminated against, a particular prisoner was mistreated, a particular individual was wrongly convicted, a particular iwi needs a breach of the Treaty of Waitangi remedied, etc.

    But when that breach is systemic - affecting all parents of disabled people, or all prisoners held in the behaviour management regime (see the Taunoa Case), or all criminal appellants denied legal aid by the Court of Appeal (see the Taito case), or all Iwi/all beaches - it takes its argument as far as possible.

    Wellington, New Zealand • Since Nov 2006 • 3009 posts Report Reply

  • Peter Martin,

    it takes its argument as far as possible.

    Should the Govt lose the appeals, would we reasonably expect a change of policy in line with the HRRT decision, Graeme?

    Dunedin • Since Nov 2006 • 184 posts Report Reply

  • Andre Alessi,

    Great post, Philip.

    I'm trying to compose my thought about this issue but every time I put something down, it just turns into a long rambling paean to family carers without much in the way of insightful analysis. Ever since I read of the government's decision to appeal I've been turning this one over in my head.

    I worked as a teacher aide at a school for kids with cerebral palsy for six months, and subsequent to that experience I can't think of a group more deserving of government support (especially of the monetary kind) than the parents and families of people with severe disabilities.

    The argument that family carers are just "doing what's expected", so don't need to be paid as non-family carers are is so breathtakingly ignorant and morally wrong, I simply don't understand how it was ever justified. Noone who's ever seen what these people do would think that this is equivalent to "normal" parenting (which isn't exactly easy either).

    More than anything though, the MoH should be viewing family carers as an integral part of the health strategy for disabled people. Supported and resourced, these people can have a profoundly positive effect on the quality of life of disabled individuals-surely that's not something we should be being stingy about?

    Devonport, New Zealand • Since Nov 2006 • 862 posts Report Reply

  • Graeme Edgeler,

    Wouldn't know.

    I believe this is the first time this has happened with the HRRT. But:

    After Taito, Parliament passed a law in an attempt to prohibit criminal appellants wrongly denied appeals a second chance at having an appeal.

    After Taunoa, Parliament passed a law to try to prevent prisoners receiving compensation for breaches of their rights from keeping it.

    After Ngati Apa, Parliament passed the Foreshore and Seabed Act.

    Were those the kinds of policy change you were after?

    Wellington, New Zealand • Since Nov 2006 • 3009 posts Report Reply

  • Grace Dalley,

    Great post, Philip. I'm so tired of people thinking that they will always be vigorous and able-bodied, and that anyone who isn't is nothing to do with them....

    Christchurch • Since Nov 2008 • 138 posts Report Reply

  • Peter Martin,

    *laff* The kind of 'beware of what you desire' policy change, Graeme?
    Perhaps Parliament could pass legislation exempting the Government from ever having to care for disabled people should one or more of their parents be alive...or perhaps seek a rebate from the parent(s) should the Govt take charge.

    But the change I would like is as Andre just mentioned:

    the MoH should be viewing family carers as an integral part of the health strategy for disabled people. Supported and resourced, these people can have a profoundly positive effect on the quality of life of disabled individuals

    and that of the carers.

    Dunedin • Since Nov 2006 • 184 posts Report Reply

  • Kyle Matthews,

    Could I ask for some context? What allowances or other support do people in this situation currently get?

    Since Nov 2006 • 6201 posts Report Reply

  • Bart Janssen,

    So if a parent happened to also be a professional care giver they would be paid for their time by the government (our money) for care of any person except their own child.

    A business-like care giver would then logically not care for own child and only spend their time caring for other people's children, allowing other care givers to care for their own child.

    The lunacy of this example should make it obvious that all care givers should be paid for their time regardless of their relationship with the person needing care.

    BTW this situation is not farfetched as parents often become professional care givers because of their own family experiences.

    In the end it simply comes down to choices. Does the government of the day choose to fund this or that. And also the choice of the public (us) to accept that the government's money (our money) is being spent the way we want it to be.

    Auckland • Since Nov 2006 • 3414 posts Report Reply

  • 3410,

    Indeed, Bart. Strangers on a Train springs to mind*.

    *but with caring instead of murder, obviously.

    Auckland • Since Jan 2007 • 2618 posts Report Reply

  • Kyle Matthews,

    A business-like care giver would then logically not care for own child and only spend their time caring for other people's children, allowing other care givers to care for their own child.

    I'm no expert, but I doubt that the government starts paying full time for caregiving just because you do a child swap.

    It would seem logical if the funding was attached to the person needing care. That way it could go to a parent or outside professional.

    Since Nov 2006 • 6201 posts Report Reply

  • diversitynz,

    Interesting discussion folks, thanks for the feedback.

    The other aspect to all this is that (to recap) the Crown’s argument is that “the decision could open the floodgates to potentially thousands of claims for ACC short-term injuries where people leave hospital but still need care and a family member is willing to provide that for a payment.”

    But ACC already pays family members – and if a person was assessed as needing care after an injury, someone – family or otherwise – would need to be paid anyway. So why is the Government now deciding it can’t be a family member?

    Apparently “the decision to appeal was ‘in the public interest’ because of the potential fiscal impact of the finding and its flow-on effect to other policy.”

    What about the fiscal impact of lengthy court battles to uphold the Government’s insistence on infringing people’s rights? Isn’t it in the public’s interest to curtail that?

    Add to all of this the disparity between support for people injured and born with impairment (unique function) - ie funded by ACC vs MoH - and ... well ... I think I'll just go and sit in the sun!

    Since Dec 2006 • 28 posts Report Reply

  • diversitynz,

    Could I ask for some context? What allowances or other support do people in this situation currently get?

    Currently family members supporting disabled family members get up to 28 days respite/carer support entitlement. The most common use of this is for some sort of (pseudo)institutional care.

    Since Dec 2006 • 28 posts Report Reply

  • BenWilson,

    Dysfunctionphobia is a good word for it. As a parent of a disabled child, we get a benefit for attendant care. I originally felt just that little bit uncomfortable with it. The problem is that I don't have any perspective and I think most people are in this boat too.

    The argument that family carers are just "doing what's expected", so don't need to be paid as non-family carers are is so breathtakingly ignorant and morally wrong, I simply don't understand how it was ever justified. Noone who's ever seen what these people do would think that this is equivalent to "normal" parenting (which isn't exactly easy either).

    Actually I think it's easy enough to just not know the difference. The discomfort I allude to above comes from the feeling that getting paid to do something I would certainly do anyway for free (looking after my child to the best of my abilities), is somehow wrong. Basically, since he was our first child, we never had any experience of childcare to compare with. Everyone says it's hard work, and it certainly was, and still is. But because it was also work I loved, because I love the boy and want the best for him, it didn't really feel that hard.

    Nonetheless, when I speak to actual professionals who deal with a lot of families, they have always assured us that we have to do a lot more than most people would, that the cares and responsibilities and self-training we've had to go through are unusual.

    And it has taken its toll on my career. I didn't really appreciate how much, thinking what we do was just normal for families. But now I've had a second, and he seems ludicrously easy by comparison. It's very hard, in fact, to break out of the mindset that the second child doesn't need the same kind of care at all, that we don't have to go an extra mile to teach him the basics. As one doctor put it, he is "boringly healthy".

    In the older child's first year my wife and I spent hundreds of hours working with therapists (who come during work hours), learning how to apply their skills. It's a little less now, but set that against the fact that most parents don't have to do any of this at all and it kind of shows the cost to us.

    So it's only recently that I've come to realize that the attendant care is actually quite a fair thing after all, if we live in a society that wants to help the disabled.

    It's money well spent too, since the care is 24/7 - pretty hard to get that from an agency without paying through the nose.

    Auckland • Since Nov 2006 • 8584 posts Report Reply

  • diversitynz,

    It would seem logical if the funding was attached to the person needing care.

    Indeed! But this is Government we're dealing with.

    I receive Individualised Funding, a monthly amount with which I employ support workers (I prefer the term PA because that's what they are, essentially). However, I am still not "supposed" to employ family members.

    Since Dec 2006 • 28 posts Report Reply

  • Sacha,

    Thanks for posting, Philip.

    I'm struck that ACC manages to successfully fund families in exactly the same situation, as do other countries. Our Ministry of Health refuses, but may pay for someone from outside the family to do the same job. That's the discrimination that the Tribunal has found to be unjustifiable.

    When that bus hits, it is ACC who you'd turn to - and as we know the elephant in the room for the last couple of decades is the vastly unfair discrepancy in service levels depending on how you come to be disabled. Those not eligible for ACC receive a patchwork of meagre benefits and rationed services.

    However, there is no reasonable policy justification for the Ministry's stance and their arguments were dismissed comprehensively by the Tribunal. The full judgement is eminently readable.

    Current assessment systems already ration support, so the talk of a big blowout is a red herring. Eligible families are few - we are talking round the clock support every day and people who have ruled out other options like poorly-paid and high-turnover support workers coming into their homes or insititutionalisation (and there are hundreds of young adults languishing in old aged rest homes in this country). No one is talking about extending this to childcare or short-term injuries - except those who oppose it.

    Ministry of Health staff seem to fear that they are not up to managing the associated issues around quality and dependency. Given past performance, that might be justified but the solution is to put a rocket up them, not further penalise citizens who deserve support.

    The Ministry's action in seeking another 12 month delay after appeals are heard before they would be required to change anything is also despicable given that the underlying policy work has already been done several years ago - and the Tribunal judgement refers to some of it. The case has also been going on so long it's not as if anyone can claim they didn't know there was a problem.

    Governments of all stripes have simply not had the gumption and willpower to bite the bullet on this and we are wasting many people's lives as a result. Demographic changes and increasing assertiveness will take that out of the hands of politicians and public servants if they don't get off their chuffs now, and they won't be thought of highly for their craven dereliction of duty.

    Oh, and snap

    Ak • Since May 2008 • 16739 posts Report Reply

  • diversitynz,

    Oh and to add insult to injury (!) one of the Ministry's expert witnesses (arguing against people's right to choice) was himself disabled. But not a user of support.

    Nice.

    Since Dec 2006 • 28 posts Report Reply

  • diversitynz,

    Sacha ... snap what?

    Since Dec 2006 • 28 posts Report Reply

  • BenWilson,

    When that bus hits, it is ACC who you'd turn to - and as we know the elephant in the room for the last couple of decades is the vastly unfair discrepancy in service levels depending on how you come to be disabled. Those not eligible for ACC receive a patchwork of meagre benefits and rationed services.

    For sure. Our level of support for the boy increased, at a rough guess about 8-fold when his ACC claim was approved. It reminded me of the scene in "As Good As It Gets" when Jack Nicholson's character pays for the waitresses son's care. Going from a bunch of people kindly struggling to give us what time they have from the goodness of their hearts, to a professional team strongly coordinated, with role divisions, years of experience in acquiring the tools, filling the forms, each specialist working their own part, but in cohesion with the others, working with all the other carers (parents, Barnardos, kindergarten, etc) to teach and motivate them, long term plans, regular assessments. It blew me away, and there is no question it has paid dividends for my son. It angers me that a similar level of care isn't available to the disabled who can't tie the whole thing to an accident.

    Auckland • Since Nov 2006 • 8584 posts Report Reply

  • Sacha,

    Philip, snap, as in you had already made the same points while I was busy writing my comment. Serendipity.

    Ak • Since May 2008 • 16739 posts Report Reply

  • Peter Martin,

    Currently family members supporting disabled family members get up to 28 days respite/carer support entitlement.

    A day is 24 hours and the respite allowance allows for the disbursement of $76.00 for informal care ( family members, friends etc) and $85.50 for formal carers for that 24 hour period.

    Oddly, it can be difficult to find folk who would give you a day off. Even if you do give them their $3.16 per hour.

    Dunedin • Since Nov 2006 • 184 posts Report Reply

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