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Access: The Family Carers case – here we go again!

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  • Katharine Moody,

    My admiration for you and the other six families is tremendous. Not that anything will make much difference other than finally sticking it up the bastards. Hope you have the victory campaign worked out - there's a very good investigative journo and film crew at Newsroom. To my mind this 'epic' ought to be committed to a documentary as the injustices deliberately and calculatingly committed by the Crown should be on record for all to see. These officials still have the attitude of colonisers.

    Wellington • Since Sep 2014 • 798 posts Report

  • Kevin McCready,

    Thanks Rosemary. Great article. "successfully applied for a Suspension Order under s 92O (2) (d) of the Human Rights Act." Applied to Minister? Can you tell us more about why Ruth Dyson's attempts failed?

    Auckland • Since Jun 2013 • 119 posts Report

  • Hilary Stace,

    Thank you for this update Rosemary. I can't believe how long these cases drag on for. It is also such a waste of resources. There has to be a better way.

    Wgtn • Since Jun 2008 • 3229 posts Report

  • Rosemary McDonald, in reply to Katharine Moody,

    Thanks you really think that there will be (hopefully sympathetic) interest out there in telly land for yet another one of these cases? Peter and I don't watch telly at we're out of touch with that media. Any suggestions gratefully received...some of the other plaintiffs are dead keen on going to the mainstream media but caution is being advised as it could come back and bite in the bum.

    Having said that...some of us have been kept circling the airport since 2008, and if the others have been quizzed by the OHRP as thoroughly as Peter and I have been at various times over the years then our accounts should hold up to scrutiny.

    The enemy is always keen to find discrepancies and dirt to dish...anything to spin the narrative their way.

    Peter and I honestly believe there will one day be a Public Inquiry into this and other disability issues...especially where the Misery of Health has had involvement.

    Over the next few months I intend (as internet access allows) to share for discussion a few of the more significant aspects that will be thrown into the ring for debate.

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

  • Rosemary McDonald, in reply to Kevin McCready,

    Applied to Minister?

    No…the Human Rights Review Tribunal shortly after the Atkinson decision was released in January 2010. The Miserly claimed it needed the decision suspended until a year after the appeals process had been through in order to get the disability support system organised to cope with removing the discriminatory policy.

    Hmmm…someone, and god knows why no one didn’t, should have reminded the Miserly and the Tribunal that at least 272 resident family members were being paid to provide disability supports…so they really didn’t need a new system. What would have needed looking into was the NASC assessment and allocation system with its emphasis on ‘natural supports’ and only funding ‘unmet’ needs. Yet again….many, many disabled people living with family had already an allocation of ‘hours’…all they needed to do was to allow them now to pay whoever they damn well chose.

    If you have time Kevin…read that HRRT decision for Atkinson….still the very best description of the situation (and arguably, chaos) of home based care for disabled people with very high support needs under the Ministry of Health.

    Such a pity that the Tribunal didn’t follow up on that good work and kick the Suspension Order into touch where it belonged.

    Oh, and Aunty Ruth Dyson?
    Oh dear....should have, could why the hell didn't she?

    We did ask her just that...a few months before the 2013 amendment to the Public Health and Disability Act. "It was only a policy, not the law,"she said, although to be fair, that was after we told her that the policy was being so routinely circumvented that we felt silly having refused to do a 'backdoor deal' ourselves.

    I have this little fantasy...Annette King and Ruth Dyson locked in a room until they tell the truth about why the hell Labour didn't sort this shit when they had the opportunity.


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

  • Rosemary McDonald, in reply to Hilary Stace,

    It is also such a waste of resources. There has to be a better way.

    There was a stab at facilitation/mediation a couple of weeks ago....the discussion inside the room is supposed to be confidential so I'll refrain from blabbing. Suffice to say, both parties were encouraged to find a mid point, a meeting of minds, 'because it could take a while to get to court, and there's no guarantee of success.'

    Peter's cheery departing comment to the room was ..."Oh well, see you all in two years!"

    Hilary...the expense of all of this, the cost to the taxpayer for both sides of the issue, really causes me deep anger.

    On the other hand....and have no doubt about it...Peter and I and the other plaintiffs all see this as an opportunity to expose, yet again, the total balls up the Ministry of Health has made of supporting disabled New Zealanders. All of us have had nightmarish engagements with the system...they're supposed to be supporting us not making our lives more difficult.

    And speaking of the total balls up that is the Ministry of Health....did y'all catch these interviews on Natrad the other day?

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

  • Katharine Moody, in reply to Rosemary McDonald,

    I strongly believe there is a great deal of public interest in this kind of 'epic' in terms of years of injustice. The adage: 'justice delayed is justice denied' is to my mind abhorrent, and I suspect would be for most. Society is so focused these days on the eradication of bullying - our institutions ought to be a step above the rest - not the worst example of it. Bullying by the state - that's the way I'd frame it. Reminds me of some of the CHCH EQ issues, only you've been up against it longer, if I understand the timeline right.

    I agree with you and Peter that some day there will be a formal Public Inquiry into this and wider disability issues - but many of these are set up arising from this type of specific case exposure.

    Wellington • Since Sep 2014 • 798 posts Report

  • Sacha,

    Thank you, Rosemary and Peter. It will be better some day because of your commitment.

    Ak • Since May 2008 • 19745 posts Report

  • Angela Hart,

    There was a session in Wellington to get the policy of political parties on physical accessibility of buildings among other things. National's representative astounded the group by saying that "love has consequences" when he was asked about the existing situation where a disabled person can lose their entire income if he or she moves in with a partner. This is a person/party so out of touch as to be inhuman.

    Christchurch • Since Apr 2014 • 614 posts Report

  • linger, in reply to Angela Hart,

    Vile policy has consequences, you’d hope – with an election coming up.
    That was Wairarapa MP Alastair Scott, standing in for Nicky “out on the harbour” Wagner.
    (N.B. Scott may have become the National rep at short notice — because bad weather prevented many of the scheduled reps from getting to Wellington — rather than just because Wagner had better things to do.)

    Tokyo • Since Apr 2007 • 1944 posts Report

  • Hilary Stace, in reply to linger,

    It was a weird meeting because none of the speakers were the party spokespeople and two of them, Greg O'Connor (Labour) and Teall (Greens). aren't even MPs so had not been at any caucus discussions about the topic. So they had to find the last minute policy answers from papers they had been given that afternoon when both their party spokespeople were stuck at airports. They both did pretty well considering. Greg has an adult son with high needs and he has had a lot of experience with services for those with high and complex needs. Interestingly none of the party spokespeople talked much about rights which is strange as it was organised by DPA, a rights-based disabled people's organisation.

    Nicky Wagner had told the organisers a while ago that she had a previous engagement and couldn't be there but I'm not quite sure why the MP for Wairarapa came long. The closest Nat MP to Wellington? He had sat on the select committee which had recently looked at accessible transport so maybe that was his expertise.

    Ria Bond from NZ First was the best prepared. She has been taking over from Barbara Stewart who is retiring so had been learning about disability issues. Tracy Martin had just the day before put out their inclusive education policy. Ria Bond is a rare bright light in the NZ First party

    There is another DPA meeting next month in Christchurch and I hope that they send along their actual spokespeople this time.

    Wgtn • Since Jun 2008 • 3229 posts Report

  • Angela Hart,

    Thanks Hilary, I'll be going to that meeting.

    Christchurch • Since Apr 2014 • 614 posts Report

  • Rosemary McDonald,

    H201702591 (1).pdf


    Pigs can fly!!!

    A wee while back I made what I thought would be a futile OIA request to the Misery of Health for more information about the 272 MOH:DSS clients who had resident family members as their paid carers as told to the Human Rights Review Tribunal in 2008 during the Atkinson hearing.

    These are now being referred to as "non compliant service arrangements".

    Anyway...if anyone is interested....the file is attached.

    Will discuss further later we are temporarily back in the Waikato with 24/7 wifi!

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

  • Moz, in reply to Rosemary McDonald,

    "non compliant service arrangements"

    Surely that's barse-ackwards, being that those are some of the few who meet the legal... ah, and there's a little problem for the miserly, indeed. Say no more, squire, there's nothing to interest the likes of us.

    Sydney, West Island • Since Nov 2006 • 1233 posts Report

  • Angela Hart,

    Interesting that the Ministry says that it estimated the number of disabled New Zealanders who might potentially be Ministry funded service users in 2008 using the 2006 NZ disability census data, that is, based on the portion identifying as severely disabled with a long term impairment. They conveniently forgot about allowing for the proportion of this group covered under ACC, probably a significant proportion.

    And they ignored the obvious method of determining who might potentially be funded under the Ministry if family carers were paid, which is the number of (non disabled) people receiving MSD caregiver's allowance, which has now been rolled into SLP. This number would have been accurate, except for the 272 (or more) families receiving "non-compliant" payments.

    It seems every statement the Ministry makes must be carefully scrutinised, the public can no longer be confident of the integrity or accuracy of the information the Ministry provides to the Courts.

    This kind of misinformation supplied by an individual should result in perjury or contempt proceedings, but a Government Ministry can do it with impunity, and expect the deception to go unchallenged, because we expect Government services to model integrity and honesty.

    Your letter from Jill also implies that a significant number of severely disabled non ACC New Zealanders had not had NASC assessments that showed they were eligible for funded support services in 2008. That is a terrible inditement of the Ministry's system, from its own high ranking spokesperson, is it not?

    Christchurch • Since Apr 2014 • 614 posts Report

  • Rosemary McDonald, in reply to Angela Hart,

    It seems every statement the Ministry makes must be carefully scrutinised, the public can no longer be confident of the integrity or accuracy of the information the Ministry provides to the Courts.


    So it was back in 2008 when Atkinson was heard at the HRRT. Economist Brian Easton assisted the OHRP by scrutinizing the data used by the Mystery of Health to demonstrate that paying resident family carers would bankrupt the country...I editorialize... but the Miserly and the Minister (Ryall) did brandish some very large and scary numbers based on the data.

    The Mystery's guy, de Raad, used two from the 2006 Survey and one from the Misery's own records. There were significant discrepancies twixt the two, especially regarding the numbers of those with severe disabilities who were not (if the MOH numbers are correct) receiving any funded support because family were doing the work for nothing.

    And as a consequence, allowing family carers to be paid (should the sky fall and the Atkinson Plaintiffs win) the cost to the government would be fiscally unsustainable.

    And this is the excuse the bastards used to justify the Part 4 amendment to the PHDAct.

    Easton's evidence to the HRRT is well worth a read. One observation he makes is that the Statistics New Zealand 2006 Disability Survey is based ...

    on subjective self-categorisation, here there is a tendency to overstate needs relative to what an objective assessment might conclude. Such a conclusion is more consistent with common sense.

    and further, and fortunately....

    It is not necessary for this case to reconcile the tabulations for the purposes of this claim. Suppose the Ministry of Health is failing to identify large numbers who are entitled to its support services. That is clearly a matter of public policy concern, but it is not the focus of the claim which is about those who are in existing receipt of support.

    VII. In the event that the Tribunal’s decision were to encourage others in need to apply for their support entitlements, then while this may be fiscally expensive, this reflects neither a change in the policy framework nor the Tribunal’s decision but a reduction in the failure of delivery coverage within the framework

    Atkinson was specifically concerned with those with disabilities with high/very high support needs.

    The people who without a competent person available on a daily basis to meet at least their core care needs and are totally reliant on an unpaid family carer need to be enrolled with their local NASC.

    If there are thousands of disabled people with the absolute need for a very high level of care who are not at least enrolled with their local NASC and been through an assessment process to ascertain the level of support they require, this is as much an indictment of their unpaid family carer as it is of the 'system'.

    Failure to acknowledge the level of dependency a loved one has, and their extreme vulnerability if as a carer one is suddenly unable to meet their care needs would be, in my humble opinion, bordering on irresponsible.

    When Peter and I officially shacked up (for want of a better expression) in April 1999 we advised all relevant officials but made sure that contact with our NASC was maintained.

    Just in case.

    (And Peter and I would be the first to acknowledge that engaging with one's NASC can be difficult to the point of boiling frustration and near blinding rage. They are a necessary evil. They are the only portal through which one can access any disability support, so it seems they feel they can treat folks like shit.)

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

  • Rosemary McDonald,

    Just an update.

    It looks like the earliest our case will be heard is February 2019.

    Crown Law are outdoing themselves, going full feral on demands for 'disclosure'.

    Some of our fellow plaintiffs are finding the latest demands for ridiculously specific information too much, and are considering pulling out from the case.

    Even Peter and I reacted to the recent communique from Crown Law with an instant 'blow it out your aft crevasse'. And our particular claim is relatively uncomplicated.

    The question that rattled our chain was demanding documentation of..."The amount, type, or timing of any out of home activities or travel undertaken by the plaintiff disabled persons and plaintiff carers' disabled family members, during the relevant period;".

    Considering the gist of the claim is with regards to NASC assessments, allocation of 'hours' to meet the person's support needs and who if anyone has been paid to provide the assessed supports. If assessed supports have not been funded because of the discriminatory 'Atkinson Policy' then the family care who provided the assessed supports should be compensated.

    All of the recent questions from Crown Law are to gather evidence to reduce the amount of any claim from we unpaid family carers.

    I know the Misery of Health has had a long standing policy of not funding for equipment to facilitate mobility outside the home unless the client is in work or education...but I had no idea that such thinking extended to the provision of disability supports.

    I don't know.

    We are in for the long haul, but are weary of their attitude.

    Some of the plaintiffs are already under near unbearable stress, and I am very concerned that the anxiety caused by these recent attacks (and yes, that is how we view it) by Crown Law will cause some significant harm.

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

  • Sacha,

    A related appeal judgement:

    Clauses 75 and 76 are especially significant.

    Ak • Since May 2008 • 19745 posts Report

  • Sacha, in reply to Sacha,

    Interviews with lawyer and mother early on Morning Report tomorrow Thu 8 Feb, I'm told.

    Ak • Since May 2008 • 19745 posts Report

  • Rosemary McDonald, in reply to Sacha,

    Thanks Sacha...I'm so busy discussing this elsewhere and with 'friends' I completely overlooked following it through MSM. I will listen to the interviews.

    About clauses 75& might be interested Sacha in a little OIA request I made late last year regarding what follow up the Ministry had done on a 1999 HFA discussion paper called Advanced Personal Care...

    You might find it interesting as you have mentioned before about risk aversion and such.

    Well...the result of my OIA?..Hmmm...put it this way, simply refusing to accept that certain DSS clients need certain 'Advanced Personal Care" procedures performed as a normal everyday part of their routine is not going to make these people or their need for APC disappear.

    However much certain Higher Ups within the Misery say "we don't fund X".

    This is what we are dealing with.

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

  • Sacha, in reply to Rosemary McDonald,

    Thanks. Do you have all the policy/operational docs mentioned in the judgement yet? Sounds like a confused mess, to be charitable.

    Yes it will be interesting seeing another round of mealy-mouthed squirming. RNZ web story tomorrow morning will apparently include written MoH response but we'll see how long they can stave off having to speak in person this time. Probably depends on pickup by media and Ministers tomorrow, so lobby hard.

    I'm hoping this new govt may finally do the right thing and instruct officials to get on with carrying out their actual legal responsibilities rather than dodging them in court.

    Ak • Since May 2008 • 19745 posts Report

  • Rosemary McDonald, in reply to Sacha,

    I’m hoping this new govt may finally do the right thing and instruct officials to get on with carrying out their actual legal responsibilities rather than dodging them in court.

    Trouble is that unless this Government repeals the part 4 amendment to the PHDAct they legally have no responsibility for people with disabilities living as part of a family.

    “70A Purpose of this Part
    “(1) The purpose of this Part is to keep the funding of support services
    provided by persons to their family members within sustainable
    limits in order to give effect to the restraint imposed
    by section 3(2) and to affirm the principle that, in the context
    of the funding of support services, families generally have
    primary responsibility for the well-being of their family members

    In my dreams, this Government would enter The House and the first order of business will be to repeal this amendment. Then they will ditch Funded Family Care and those few that are on it are transferred to IF and the family member can be paid as any other carer with an upper limit of say 60 hours per week. Then, this new Progressive Government will reveal ALL the redacted sections of the Regulatory Impact Statement that National thought was appropriate to support the PHDAct(2)...this would, in my book, go an awful long way to restoring just a little bit of trust in Government.

    Then, a complete overhaul of the NASC/DSS human beings preferably, rather than whatever manner of beast constructed the current one. No one involved at any level in any committee, stakeholder group, policy advisory etc contributing to the current system need apply.

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

  • Rosemary McDonald, in reply to Sacha,

    Thanks. Do you have all the policy/operational docs mentioned in the judgement yet? Sounds like a confused mess, to be charitable.

    Do I? Do large hairy beasties go poo poo in the woods?

    Right here. Ride the time machine...

    NASC Guideline-High Cost Community Plans.

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

  • Hilary Stace,

    The family who has won their claim is one of those featured by ally Mike Wesley Smith in his TV3 (the Nation I think) report last year. He followed up on TV tonight.

    Julie Anne Genter has been delegated Assoc Minister responsibility for Disability Support Services by Health Minister David Clark. I'm not sure how up to speed she is yet but considering it was Catherine Delahunty of the Greens spearheading opposition to FFC I hope she will do something before long. It was a vindictive act by the then Government after they lost the court case and we have 'moved on' since then so it could easily be overturned.

    By the way there is also a 'System Transformation' going on which is likely to be a complete overhaul of the NASC system. Seems to have considerable input from actual disabled people. Manawatu will be first for the roll out. So we shall see.

    Wgtn • Since Jun 2008 • 3229 posts Report

  • Rosemary McDonald, in reply to Hilary Stace,

    Julie Anne Genter

    is busy right now killing two birds with one stone.

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

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