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Access: Disability as a wicked policy problem

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  • Hilary Stace, in reply to Marc C,

    I hear Professor Sir Mansel Aylward is visiting New Zealand later this year.

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Angela Hart,

    I hope he receives an appropriate reception.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Marc C, in reply to Hilary Stace,

    Thanks for that, Aylward is probably coming to see his mate Dr Bratt at MSD, to see how he is doing with "change management" that he was "learning" about when visiting Aylward at his peculiar "psycho-social and disability" research centre in Cardiff, Wales, during April and May 2014.

    By the way, one man who was asked to deal with a complaint, indeed some complaints, where MSD and Dr Bratt refused certain info under the OIA, he has now decided to resign as Ombudsman, two years before his 5 year assignment should have ended:
    http://www.radionz.co.nz/news/national/307362/ron-paterson-resigns-as-ombudsman
    http://www.stuff.co.nz/national/politics/81480414/ombudsman-ron-paterson-cuts-short-fiveyear-term-as-office-deals-with-investigations-backlog

    This was already announced weeks ago on the website of the Ombudsman, but media seem to have just noticed and learned about this today.

    From what I gather, he was not much of an effective Ombudsman, although there was the odd determination he made, that was respected. But the following requester was not impressed, I gather:
    https://nzsocialjusticeblog2013.files.wordpress.com/2015/08/ombudsman-complaint-o-i-a-to-msd-dr-bratt-publ-int-prov-dec-compl-hilit-22-05-15.pdf
    https://nzsocialjusticeblog2013.files.wordpress.com/2015/08/ombudsman-complaint-3xxxxx-msd-o-i-a-fr-16-01-14-bratt-presentations-anon-ltr-13-06-15.pdf
    https://nzsocialjusticeblog2013.files.wordpress.com/2015/08/ombudsman-complaint-msd-o-i-a-rqst-16-01-14-dr-bratt-presentation-info-hilit-dec-23-06-15.pdf

    I think more re this kind of stuff was already posted here before.

    Government agencies' conduct and performance, and the treatment of sick and disabled, it leaves to be desired, and transparency is something hard to come by, at least at times. And where is the evaluation report that MSD promised mid last year for 'Mental Health Employment Services', I wonder?

    Auckland • Since Oct 2012 • 437 posts Report Reply

  • Rosemary McDonald,

    This should be shared somewhere...

    An Auckland woman suffering from multiple sclerosis is being denied funding for a new standing frame.

    Susan has been using the same standing frame for 20 years and, along with her husband David, she's campaigning to get a new frame funded by Accessable, a Ministry of Health company.

    In the last 10 years she has been unable to walk and the frame allows Susan to move her legs and maintain a standing transfer.

    Accessable told them they only support funding for a standing hoist if it's an essential need, not a rehabilitation tool.

    ...because, MOH:DSS don't do rehabilitation...

    Toni Atkinson, group manager of Disability Support Services, says the Ministry of Health is still considering the application.

    "Funding for a standing frame is provided where it is needed to maintain a person's functional posture...where this is part of a long term plan and not limited to a period of specific rehabilitation," he says.

    An Equipment and Modification Services assessor will make a clinical decision as to whether or not the person meets the criteria, Atkinson says.

    (NB The "Toni Atkinson" we have dealt with is actually female....guess the reporter assumed otherwise...)

    This is exactly the kind of shit that we (those dealing with physical impairments) have to deal with just about every single frigging time a piece of equipment or hands on support is needed.

    Every single frigging time.

    To the point where you simply expect them to say no...and prepare for battle.

    The Misery of Health really does hate disabled people.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Gillian Hart, in reply to Rosemary McDonald,

    Ironically enough, I was told they wouldn't fund a standing frame because it WASN'T for rehabilitation. The assessor told me she thought she could make a case for funding of a standing frame if I'd lost the ability to walk and was intending to use a standing frame in an effort to get it back. Because she'd just had me demonstrate my heavily-leaning-on-walker hobble around the kitchen, she said she couldn't make that case. In her view, rehabilitation was fundable but preservation of existing function was not.

    Completely different reasoning, same result: we can see you would benefit from this thing, and that the consequences of not having this thing could be dire, and that having this thing could save the health system money in the long run, but NO.

    Charity paid for my standing frame. I firmly believe it is part of the reason I am still alive.

    Auckland • Since Nov 2015 • 4 posts Report Reply

  • Hilary Stace, in reply to Gillian Hart,

    I have heard from OTs that they are as frustrated as everyone else. They see what people need and the equipment is available, but their funding is so ring-fenced they can't provide it.

    The problem and the answer is political. I would write to Annette.king@parliament.govt.nz about every situation. so she can gather information about how widespread and stupid it all is.

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Rosemary McDonald, in reply to Gillian Hart,

    In her view, rehabilitation was fundable but preservation of existing function was not.

    Hmmm...I'm confused. (Becoming an almost default state these days...)

    To my mind, 'rehabilitation' encompasses maintaining function. The 'use it or lose it' mantra.

    Perhaps the meaning has been changed? I have noticed that some of the big home care providers are using the term "rehabilitation" when in actual fact they are providing home and community support services....bog standard personal care and household management. Maybe "rehabilitation" sounds more positive, projects optimism that the 'person' is going to get 'better'?

    I firmly believe it is part of the reason I am still alive.

    This is what Peter feels about the power assist wheels for his manual chair. When the local OTs saw him beetling around the convention centre at the disability expo at Mystery Creek a decade ago in a chair with these wheels on...."just like a para", they determined they were going to get funding for them....and bless them they did. It took about 18 months, and the Miserly, via Enable, could not understand why Himself didn't opt for a power chair. "Much easier to get around" they argued....but a method of propulsion that would have required no effort on the user's behalf. The minimal, but hugely significant function in this C5 tetraplegic's chest and abdominal muscles would have been lost....and the horrible chest infection he contracted in hospital while having chemo for leukemia would have killed him.

    Sometimes we wonder if that would have been the Misery's preferred outcome...

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    I would write to Annette.king@parliament.govt.nz about every situation. so she can gather information about how widespread and stupid it all is.

    Can you hear me laughing, up here in the miserable Waikato Hilary?

    Somewhere in the bowels of my old laptop are a number of begging letters with regards to funding for a 'high/low' bed....written during Labour's occupation of the Beehive.

    I argued(in between popping painkillers for my trashed back) that the hundreds of thousands of dollars the Miserly had already saved with me providing all of Himself's care more than justified the expense....and would extend considerably the length of my tenure in this position. It would have been a real investment.

    They (including Ruth Dyson if I recall) basically told me to eff off.

    We finally did get funding....but we had already organised the Bus to better manage His cares....and we only use the funded bed for the few weeks in the year we are actually not on the road.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Gillian Hart, in reply to Hilary Stace,

    OTs are very frustrated because they are not able to exercise their professional judgement. The rules--I'm sorry, "Ministry guidelines"--trump all. There is not even room in the system for the sort of argument that bean-counters would like. For example, you can't say "doing X that you don't fund would cost $5k and be a one-off, but doing Y that you do fund would cost $20k+ every five years (and achieve a less satisfactory result), so let's do X". My OT and I could have made that case about 2 years ago about something, but there was no way to get it considered.

    Auckland • Since Nov 2015 • 4 posts Report Reply

  • Sacha,

    Spencer case judgement delivered today - download from here. Awarded about $200k in backpay, and an order under the Human Rights Act for MoH to train their staff to respect human rights.

    [218] We see benefit ... in an order under s 92(3)(f) of the HRA requiring the Ministry needing to educate its officers in the importance of the human rights of disabled persons and their caregivers. That is a dimension, which appears to us to have gained only belated recognition in the policy debate within the Ministry following Hill; and then, we imagine, as a result of the Tribunal’s Atkinson declaration. We make such an order.

    The lack of repentance must have been obvious to the court.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    The lack of repentance must have been obvious to the court.

    Their arrogance, their lies, their offensive attitude towards disabled people and family carers....

    Thanks Sacha...

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Sacha,

    Kirsty Johnston's Herald story on the judgement. And her associated tweet makes it clear how much she cares:

    She bloody won!!!

    Ak • Since May 2008 • 19740 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    It gets betterer and betterer...

    ....already given in Atkinson as to the then inchoate state of the Ministry’s disability policies. p34

    I had to look up "inchoate".....

    1.
    just begun and so not fully formed or developed; rudimentary.
    "a still inchoate democracy"
    2.
    LAW
    (of an offence, such as incitement or conspiracy) anticipating or preparatory to a further criminal act.

    Both work....

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    I don't read that as better - it's a court indulging a Ministry on the basis that they haven't had enough time to get their shit together on policy - despite billions and decades to draw on. Won't help adjust their attitudes.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    I don’t read that as better

    Hmmm...I am being a tad facetious....just a tad.

    Reading the Decision is one thing, but I have the benefit of having sat down the back of various courtrooms, for both Atkinson and Spencer, and seeing the expressions on the judges' faces and hearing the tone of their voices.

    "Inchoate" is still absolutely correct.

    In both senses of the word.

    I'd love to put the person who came up with "the numbers" (the 30,000 unpaid family carers of high and very high needs clients who are going to crawl out of the woodwork demanding to be paid with the resulting cost of $17 to 593 million.) on a very hot griddle and get them to show their workings....

    To my mind this was criminal misrepresentation....as born out by the ridiculously low uptake of FFC.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Angela Hart, in reply to Rosemary McDonald,

    To my mind this was criminal misrepresentation….as born out by the ridiculously low uptake of FFC.

    Perjury?

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Angela Hart,

    Perjury?

    I admit to being prejudiced.

    I have just finished reading the entire decision and am more than a little, well, disappointed at the assertion by their honours that the Misery was acting throughout in "good faith".

    Let's remind ourselves again of the Miserly's own definition of "good faith" from the The Funded Family Care Notice 2013.

    11 Good faith generally means to discuss with each other any matter which affects the delivery of the disability support services in an open way so that all matters are “on the table”, to be active and constructive in establishing and maintaining a good relationship, being responsive, providing information, and not doing anything that might mislead or deceive each other.

    Did the Ministry of Health, Disability Support Services and Crown Law show "good faith" during this whole sorry saga?

    Did they heck as like.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Rosemary McDonald, in reply to Rosemary McDonald,

    And, on a personal level, I have written evidence of one of the Ministry's witnesses quoted in this decision making a completely false statement regarding our own family care situation. Provably false.

    And it would appear there is nothing we can do to put the record straight. (We are trying, but as usual it's like pushing it uphill.)

    So if I'm prejudiced....it's with very good reason.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Angela Hart,

    The assertion that the Ministry acted in good faith is hurtful and difficult if not impossible to reconcile with the history. I can only surmise that it is made for political reasons. Axing a 70 hour need assessment down to twenty-nine and a half hours on the basis of the difference between home and residential support is telling.
    I find it disturbing that personal details of care and support required were not suppressed in this case as they were for Atkinson.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Angela Hart,

    I find it disturbing that personal details of care and support required were not suppressed in this case as they were for Atkinson.

    Yep.

    Perhaps this is a warning?

    Persist in your claim (to those who might be waiting in the wings) and contribute to further loss of dignity of the family member you are supporting?

    Miserable sods.

    If only more folk knew what indignities the Atkinson plaintiffs were subjected to…

    “Good faith” my arse.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Angela Hart,

    The Good Faith Ministry- abandon hope all ye who enter in....on Faith shall ye rely- and we shall determine what Good Faith is.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald,

    Margaret Spencer gives heartfelt thanks to those who helped her win this case.

    "They don't care. If they did care....I wouldn't be here."

    So, Ministry of Health and Good Faith, why couldn't you have just admitted you got it horribly wrong and settled?

    Rather than put people through this painful and protracted process?

    Shame.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Sacha,

    Text of RNZ story contains link to that compelling audio. Should clarify Margaret's "they don't care" comment above is about public servants and politicians, not the lawyers and others who supported her long fight for justice.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Rosemary McDonald,

    Annette King congratulates Margaret Spencer....

    National used their unfair and obnoxious legislation to take away the rights for families to get compensation in 2013 and Labour has pledged to repeal this.

    Well, that is well and good Annette, but...

    1. Why didn't Labour 'sort this' prior to the Atkinson plaintiffs
    going to the HRRT in September 2008? There was enough evidence that 'the system' was failing those with high and very high support needs, and the 2008 NACEW report actually said that in those circumstances family carers should be paid in the same way as any other carer.

    2. Why has Labour not demanded complete transparency on the current Government's resolution of this issue??

    The RIS that accompanied the Part 4 amendment to the PHDAct was
    heavily redacted, and this propensity to redacting began in the
    Cabinet Discussion papers back in 2012. I believe there are many
    unanswered questions and unresolved issues swirling around this sorry and shameful issue that would benefit from light being shed fully on those blanked out sections.

    The judges in the recent Spencer decision stated that the Ministry of
    Health has acted in "good faith" throughout this long and protracted
    process.

    I cry bullshit on that.

    The The Funded Family Care Notice 2013 found here
    https://www.dia.govt.nz/pubforms.nsf/NZGZT/NZGazette131Sep13.pdf/$file/NZGazette131Sep13.pdf#page=31

    gives us a definition of "good faith" from the Ministry's and the
    Government's point of view.

    "11 Good faith generally means to discuss with each other any matter
    which affects the delivery of the disability support services in an
    open way so that all matters are “on the table”, to be active and constructive in establishing and maintaining a good relationship, being responsive, providing information, and not doing anything that might mislead or deceive each other ."

    So, Annette, how about reminding the government about what 'good
    faith' means and force them to reveal all redacted sections of the
    Regulatory Impact Statement and the Cabinet Papers?

    What is so awfully horrible and scary in regards to the provision of
    publicly funded disability support services that it has to be hidden
    behind "legal confidentiality and privilege?

    Regards,

    Rosemary McDonald.

    (email sent this morning.)

    I'll keep y'all posted....(but don't hold your breath.)

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    How can an opposition MP "force" a government to do anything?

    Ak • Since May 2008 • 19740 posts Report Reply

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