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

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  • Rob Stowell,

    And you can't use carer-respite money to pay family members- at least if they live in the same household.
    I can understand some of the rationale: there'd be a temptation to take the money, and the carers would get no respite (though the respite money can give you from worry is indisputable).
    But ruling out using carer-respite to give live-at-home members of a family (teenagers, grandparents etc) a small recompense- and principal carers a break knowing the care is coming from someone familiar, in their own home- seems mean and petty.

    Whakaraupo • Since Nov 2006 • 2054 posts Report Reply

  • Steve Curtis,

    AS I see it the ACC system was no fault because the law previously said find whos at fault and sue them ( or their insurance company).

    Which of course would lead to strange situations if you fell off your own ladder while painting your own house, that is sue the ladder maker!

    For cars , the provision of insurance was semi compulsory so if you ran off the road while driving your own car, you had a payer ready to meet their obligations ( or not?).

    So the car drivers scheme ( covered by insurance) was mixed up with the employers scheme( covered by insurance) and included individuals outside of the above ( covered by deductions from wages by IRD) to give essentially the ACC funded payments system we have. The government paying the premium of those who dont have an income .
    The connection being that ACC does pay resident family members for the care they provide.

    Im a bit lost by Phillip refeering to a situation when you are hit by a bus and who will or wont be paid to care for you.
    Its obviously an accident so is covered by ACC.
    Is it just me or is he being deliberately misleading.

    More to the point 300,000 qualify for disability support

    It seems due to some previous errors some of the plaintiffs did receive funding for family carers.

    I think its quite justified the Government appeal this case, as the Tribunal has ruled on complicated legal questions that are best decided by the Judges

    Auckland • Since Nov 2006 • 314 posts Report Reply

  • Sacha,

    300,000 do not qualify for the level of support the plaintiffs are talking about. The total numbers are way less than that. And less than 300 were granted that support already.

    The tribunal is part of our legal system and their judgement canvasses relevant aspects of law.

    I'm not sure why Philip chose to offer an ACC example.

    Ak • Since May 2008 • 19413 posts Report Reply

  • diversitynz,

    Im a bit lost by Phillip refeering to a situation when you are hit by a bus and who will or wont be paid to care for you.
    Its obviously an accident so is covered by ACC.
    Is it just me or is he being deliberately misleading.

    Why would I be deliberately misleading??

    1. I'm referring to Ryall's claim that 'the decision could “open the floodgates to potentially thousands of claims for ACC short-term injuries' - see my original post.

    2. I'm trying to engage "non-disabled" people in this debate – it's not just about disabled people – it's about YOU!

    Since Dec 2006 • 28 posts Report Reply

  • Islander,

    Kia ora Phillip- up until November last year, I was classified as legally blind (cataract op, and I had 4/4 vision in one eye, cool!) but, the only assistance I received (and I really appreciated it, believe) was taxpayers paying for my contact lens & other eye aids. So - not quite in the disabled camp, not quite in the ablebodied camp..

    which is where I come from, responding to "this debate -it's not just about disabled people - it's about YOU!"

    Many of my family have both genetic & age-related degenerative conditions (the severe myopia runs rife; the depression seems to be genetically based, and there is a family history behind one of my grandnephew's Asperger's; osteoarthritis is almost inevitable as is gout) which disable us. We rely on family to look after family - and we are lucky: we are a large whanau, we care for each other.

    HOWEVER: frequently, interwhanau care-giving (whiich to date has been intermittent) has come at considerable emotional & financial cost. It is *not* the same kind of emotional & financial cost that whanau with permanantly disabled members face, BUT it does give us an insight into problems faced.

    ACC is -OK (I've had a fractured right arm for the past month & a half- I cant claim anything because 'you can still use a keyboard.' Nemmind I work by physically drawing & writing stuff first - and that there is no possibility for having house-chore help where I live) - but what about those disabled by genetic conditions? MoH is on hand for some matters - but I think the powers-that-be rather like the fact that family/friends&neighbours will almost always do their (unpaid & rarely recognised) best to help.

    I'd happily see my tax dollars go *specifically* to extending the *idea* behind ACC - no-fault assistance whatever the condition - rather than to phuquing stupid sports/stadia/bread&circuses.

    And thank you for raising this matter, diversitynz-

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

  • Jackie Clark,

    Thanks Philip for your great post - this is an issue that needs addressing immediately, really, for the sake of us all. There was a great piece in the Herald this morning about a family consisting of a father in his 70's and his two children who are cognitively disabled. He has been doing it all by himself for 40 years and more, and I would recommend that you all read his story. It sickens me that when the bottom line is threatened, people suffer so much, and there is absolutely no need for it. Like grandparents who take over the care of their grandchildren when their children are unable, parents who care for their differently abled children, often in extraordinarily difficult circumstances, are doing a job, a much underestimated job, and should be remunerated for their love and time, and effort. People who are unable to care for themselves, in whatever way, or to live independently, or who need help in some way for a substantial part of the day, deserve to have people working with and for them who care about them, and who better than family, in most cases? And what about training for family members who care for those people they love who can't do every thing for themselves? Such a complex issue, and yet so, so simple.

    Mt Eden, Auckland • Since Nov 2006 • 3136 posts Report Reply

  • DexterX,

    It is manifested, as stated in the Tribunal decision, in the expectation that families should provide, indefinitely, unpaid "natural support" to adult children; in the belief that disabled people should be excluded from professional or commercial family relationships because they are disabled, even though such relationships have existed for generations in family businesses; and in policies that blatantly act against the Government's own Disability Strategy.

    I am unsure of what you are trying to say here (see above)?


    What are the policies that blatantly act against the Government's own Disability Strategy?

    The reason for asking is that I care for a disabled parent and am interested in the issues.

    I was alwaso aware that some cummonity based trusts employ family members to look after disabled people.



    Auckland • Since Nov 2006 • 1223 posts Report Reply

  • Sacha,

    The Herald story about one of the families at the centre of the Tribunal case is worth a read (despite reflecting the media's usual cringeworthy assumptions about normality and "burden"). Paints a picture of the personal side of this situation and also adds details about the legal/political process from here:

    The Government contends the floodgates would open if the families won, with financial implications running to hundreds of millions of dollars.

    The Tribunal, however, agreed with the Office of Human Rights Proceedings, which fought the case on behalf of the families, that the cost was likely to be $32 million to $64 million. Its decision found that the policy infringed the Human Rights Act and the Bill of Rights Act.

    Office of Human Rights Proceedings director Robert Hesketh says the Government has announced an appeal too soon, with a second finding due from the Tribunal.

    The second part awaits the outcome of a yet to be scheduled remedies hearing, which could include rulings on back pay, guaranteed future earnings or damages for emotional harm as a result of the unlawful policy.

    "We're going to be asking the Tribunal to urgently convene the remedies hearing and we're going to be asking the High Court to either dismiss the appeal either way, or alternatively defer the appeal until the remedies part of the case before the Tribunal has been dealt with."

    He fears "legal jousting" over the case could go on for years, travelling through the High Court and, depending on the outcome, going on to the Court of Appeal and the Supreme Court.

    Ak • Since May 2008 • 19413 posts Report Reply

  • Hilary Stace,

    Thanks Philip, and for link to your functional diversity article.

    Wondering how we got to this point and reflecting on history.
    1938 Social Security Act - First Labour Govt strong on principle of taxation on ability to pay, in exchange for free care when you need it.
    1972 ACC began with no fault compensation paid for by levy.
    1975 Disabled Persons Community Welfare Act has intention of provision from taxation for those whose impairment not ACC related. Not ring fenced budget.
    1970s deinstitutionalisation starts, poorly planned and funded
    1988 Royal Commission on Social Policy has great chapter and recommendations re disability but not acted on
    1990s Ruth Richardson’s Mother of All Budgets cut benefits and social spending. 'New Deal' Jenny Shipley, Simon Upton took disability support from Social Welfare to Health. Regional Needs Assessment and Service Coordination system set up within ring fenced budget, contracting system brought in, ACC provisions cut. This is also when payments for family members at same address were cut.
    1996 Special Ed 2000 brought in 1% ORRS funding and only minimal support for other disabled kids
    1999-2008 – Rights based NZ Disability Strategy and some tinkering of system but little structural change (ie NZDS not implemented)

    So for the last two decades we’ve developed a pattern of ring fenced budgets, poorly targeted and inadequate funding, distrustful contracting relationships, and huge fragmentation, leaving more responsibility and little choice for those who provide ‘natural supports’ (ie not paid) and even less for the disabled person.

    The 2008 Social Services Select Committee report recommended a person centred system which gives the disabled person choices and control of the system without such budgetary constraint. Maybe this will yet happen?

    Wgtn • Since Jun 2008 • 3103 posts Report Reply

  • Sacha,

    By "ring-fenced" I take it you mean capped - which in practical terms means without sufficient funding to meet need. ORRS is a classic example.

    It has distorted what the government agencies focus their energies on too - saying no rather than yes.

    Ak • Since May 2008 • 19413 posts Report Reply

  • Hilary Stace,

    Yes capped. So that the first thing to be considered is whether there is the funding. So it becomes a competition about who can provide the most negative 'case' and thereby win access to precious funds.

    A person-centred system would look at what the person wants in order to improve their wellbeing, who they would like to be involved, what they would like them to do, and then asks how they can all work towards achieving this. When put like this, most people would prefer a system whereby didn't just see people who were paid to spend time with them but a circle of support which include friends, neighbours as well as paid caregivers. The person themself makes the decision, supported as required by some sort of independent facilitator/advocate.

    The Local Area Coordination system in Western Australia has shown this sort of approach is actually cheaper than a ring fenced budgetary model.

    I will be interested in how the new Whanau Ora system works out as some aspects sound similar.

    Wgtn • Since Jun 2008 • 3103 posts Report Reply

  • Sacha,

    Hilary, I reckon you're better using the term "capped" then.

    Ring-fenced usually means separated out so it can't be spent on other things. Doesn't convey the nub of the problem which is the funding being determined not by the level of need but by political whim and bureaucratic fancy.

    Look forward to more detail about LAC costs/benefits when it's released. I've witnessed the Misery of Health disability services folk waste vast amounts more saying no than it would have cost to say yes. Creates a culture of mistrust and as you say of encouraging applicants to emphasise weakness over strengths. To their credit they have now made it simpler to get relatively cheap equipment and housing mods done without as much fuss. So much more to fix though.

    Ak • Since May 2008 • 19413 posts Report Reply

  • Hilary Stace,

    MoH DSS now part of the National Health Board - not sure of the implications but probably means more devolution, fragmentation and staff cuts.

    And I probably do mean ring-fenced and capped. So can be spent on certain things not others eg vacuuming but not shopping support even if it is not what person wants (although things slowly changing), out of a limited budget pool.

    Wgtn • Since Jun 2008 • 3103 posts Report Reply

  • bronwyn,

    I used to work at a respite base for children with intellectual impairments & those on the autistic spectrum (as some of you will know, despite the vast range of needs, children are all often lumped together in this situations, often to no-one's particular benefit), and so I got to know a lot of families caring for someone with high needs. I know a lot of families did a tremendous job, yet there was also a number who weren't coping, and it seems to me that if these families had the choice about whether to employ someone (even someone in their family) to care for their child, it would have improved the quality of life not just for that child, but for everyone from their siblings to their classmates.

    And Jackie - yes, I often used to wonder why I was able to access better training across a range of areas than most of these parents. The reason why, of course, is because I was a "professional" whilst these parents were just "naturally" expected to know.

    tamaki makaurau • Since Nov 2006 • 86 posts Report Reply

  • George Darroch,

    And look, the National Government is cutting support for teaching deaf children.

    This makes me so upset. Few things are more important than the right to education, and the right to language and speech. And those rights are being denied, without a thought or care.

    WLG • Since Nov 2006 • 2264 posts Report Reply

  • Just thinking,

    Although the title is missleading this story is a good news story and well overdue.
    Imagine how many kiddies lives will now be saved when there is candle in the caravan to knock over.

    Putaringamotu • Since Apr 2009 • 1158 posts Report Reply

  • Sacha,

    the National Government is cutting support for teaching deaf children

    Well aint that ambitious for New Zillund

    Ak • Since May 2008 • 19413 posts Report Reply

  • Kyle Matthews,

    Minister of Disability Issues Heather Roy said it would be "inequitable" for the Government to fund only one of New Zealand's two sign language teaching providers.

    Yes. What a conundrum. If only there was another option other than cutting funding from one of them. If only.

    Since Nov 2006 • 6241 posts Report Reply

  • Sacha,

    It's like equalising personal,trust and company tax rates (for which there's no evidence but hey) - what option does one possibly have other than reducing the top ones?

    Ak • Since May 2008 • 19413 posts Report Reply

  • bronwyn,

    Government is cutting support for teaching deaf children.

    Gosh. I don't even know what to say. And it's only four teachers. It's probably the equivalent of every Government department doing without buying their own $4 wall planners or something.

    I am being slightly facetious, but only slightly.

    tamaki makaurau • Since Nov 2006 • 86 posts Report Reply

  • Sacha,

    Idiot/Savant is not amused, good on him.

    This decision is simply evil. There is no other way to describe it. Learning NZSL - an official language of New Zealand - is not a luxury.

    For these people, it is a necessity, vital if they are to get along in everyday life or have any sort of normal relationship with their friends and family. Funding it is a requirement of any decent society.

    But our government isn't decent. They'd rather spend the money on subsidising the snobbery of the rich by increasing funding for already wealthy private schools. And that speaks volumes about their priorities.

    doff o the hat to Emma

    Ak • Since May 2008 • 19413 posts Report Reply

  • Islander,

    This decision is obscene - especially after a large amount of taxpayer dollars has been dumped into propaganda for the 'Standards' debacle.

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

  • Kyle Matthews,

    And politically bizarre. For less than a million dollars savings, the National Party are lining up against deaf children. That'll look terrible everywhere it goes.

    Since Nov 2006 • 6241 posts Report Reply

  • Sacha,

    Oh, it gets better - there are pros and cons, but the govt is re-opening the debate about providing choice of mainstream or segregated education for disabled children. You may recall parents winning a court case against the previous government for removing that choice. Now this one is going down the same route.

    Discussion doc here.

    Ak • Since May 2008 • 19413 posts Report Reply

  • Kyle Matthews,

    Oh, it gets better - there are pros and cons, but the govt is re-opening the debate about providing choice of mainstream or segregated education for disabled children.

    Obviously I'm getting cynical in my old age, but I'm betting there will be less not more funding going into it at the end of it, whatever other outcomes it leads to.

    Since Nov 2006 • 6241 posts Report Reply

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