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Access: Family Carers Case – Five Years On

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  • Hilary Stace,

    Thanks for this update Rosemary.

    Wgtn • Since Jun 2008 • 3034 posts Report Reply

  • BenWilson,

    Please.

    Seconded.

    Auckland • Since Nov 2006 • 10320 posts Report Reply

  • Sacha,

    A mention in passing by Anne Salmond:

    The independence of the judiciary and the rule of law have been eroded by the passage of a stream of acts that breach the Bill of Rights; by removing legal protections from citizens for economic or fiscal gain (protesters at sea, and family caregivers for the disabled, for instance); and by setting up politically appointed panels to bypass the Environment Court, for example.

    Ak • Since May 2008 • 19228 posts Report Reply

  • Angela Hart, in reply to Sacha,

    wow, that is one hell of a piece by Dame Anne.

    Since Apr 2014 • 601 posts Report Reply

  • Sacha,

    ACC can be pig-headed too.

    Ak • Since May 2008 • 19228 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    We were parked up in a campgound some years ago.(won't say where, but there was snow in the hills above the city) when a family of five drove in and took up residence in one of the units. Two of the kids were rambunctious toddlers, the older one sat in an undersized buggy...quietly. Dad was there, but not, if you know what I mean (eh, ladies?) Mum was lovely, but not well organised. There was a brand new fancy child restraint sitting by the car, and Mum was trying to figure out how to install it. Dad....having a beer.

    So, being a busy body, I strolled over for a chat.

    Turned out kid in undersized buggy was five and had cerebral palsy. Surgeons involved in rectifying this child's hip problems had, off their own bat, investigated the circumstances of his birth, filled out the necessary paperwork, spoken with the apropriate people, applied to ACC...and had the lad's CP atttributed to Treatment Injury and covered by ACC. The fancy child restraint (which I did fit for Mum, and adjusted all the straps so child was safe. supported and comfortable) was the first piece of equipment funded....and oh, what a step up from the old crappy bog standard child restraint they had been using.

    What baffles me is why The CP Society have not surveyed their members, and done a comparison between supports provided by ACC and those provided by MOH;DSS. Similar to the recent comparison of Spinal Cord Impaired.

    The difference in entitlements and support is HUGE.

    Waikato, or on the road • Since Apr 2014 • 1236 posts Report Reply

  • Angela Hart, in reply to Sacha,

    Yes, ACC is by no means perfect and has shown itself to be subject to the philosophy of the political party in power, when it should stand apart and be consistent. However the real point is that the reason this mother chose to continue to fight to get ACC cover for her son is that the Ministry of Health services he was receiving were woefully inadequate. If the disparity between supports offered by the two providers (ACC and MOH) were not so mind bogglingly enormous, this fight would not have been needed. Fact is human beings struggling with unusual circumstances like this should not have to spend more time and energy fighting for reasonable support. In Godzone, they do have to fight, that is the default position and it is wrong.

    Since Apr 2014 • 601 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    "ACC can be pig headed too."

    Yep, sure can Sacha....but at least ACC claimants can choose who provides their care, they are entitled to care AND if they are not happy with a decision they can take their complaints to Court.

    Non ACC disabled have none of these rights.

    In fact, MOH;DSS clients are 'entitled' to nothing.

    The Family Carers Case (yes, I know, I keep on banging on about it) was a shot at gaining ONE POINT OF PARITY with ACC disabled. ONE POINT.

    We nearly made it.

    I wonder what Kurtis' mum would say if she was told that one of the plaintiffs in Atkinson had been the sole unpaid carer for her similarly affected son for 46 years?


    That even on Funded Family Care, the highest number of hours the Ministry of Health will fund is 40 hours of care per week.

    Less than a quarter of the hours that ACC will be paying for this client.

    One of the commenters said that 'more people should fight for their rights like this lady has'....I nearly pisssed myself laughing.


    I was going to submit another post about this issue...but its clearly dead in the water. But I will say this....I quickly scanned Herald and Stuff for "family carers looking forward to being paid" stories from 2008 through to early 2013. Quickly came up with over two dozen links. I did not even start to list the telly programmes.

    And you know what?

    For all of that media coverage...not one, NOT ONE story from a PAID family carer...either legitimately through ACC or through a backdoor deal under MOH;DSS. Not one of these PAID family carers stepped up (even annoymously) and said " I've been paid for years...why are these people having to fight???"

    So what does this tell me?

    That folk, even in the same disability 'community', don't give a tinker's about anyone else's situation. "I'm alright, Jack." Or, they tell themselves that they are somehow 'special'. Or, that another family carer in exactly the same circumstances is NOT getting paid because the care they are giving is not as good, not as worthy. (and yes, that has been said to me.)

    There is no disability 'community'.

    There are individuals(and small 'special interest groups') who are out for everything they can get for themselves, and to hell everyone else.

    Sacha...I understand you were trying to make the point that all is not plain sailing for ACC clients....and I know that.

    But, could non ACC disabled, MOH;DSS disabled and their family carers just once, just once, please, not have to be sidelined by a successful 'we took on ACC and won story'?

    I know that Atkinson will become a footnote in NZ disability history, (bracketed with other issues as examples of the Government crapping on the rights of New Zealanders), but at least we tried.

    Waikato, or on the road • Since Apr 2014 • 1236 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    one of the plaintiffs in Atkinson had been the sole unpaid carer for her similarly affected son for 46 years?

    I've met them both, and it boggles me.

    Ak • Since May 2008 • 19228 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    One of the commenters said that 'more people should fight for their rights like this lady has'....I nearly pisssed myself laughing.

    I detest the "won't let his disability stop him" media stories for the same reason - everyone else that isn't getting what they need must be a slacker, eh.

    Ak • Since May 2008 • 19228 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    I was going to submit another post about this issue...but its clearly dead in the water.

    Wouldn't give up just yet. Over 500 people have read this already. Who knows what you have sparked in them? Will need some organising around the message to get a result - including talking to current opposition parties and allies. With the abundance of 'spoons' we all have.

    There are disabled communities, not a singular one, I agree. That fragmentation is one of our biggest barriers to change. What have the more parent and carer focused organisations like Parent to Parent and Carers NZ offered so far in the way of advocacy support?

    Ak • Since May 2008 • 19228 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    The difference in entitlements and support is HUGE.

    certainly is.

    Ak • Since May 2008 • 19228 posts Report Reply

  • BenWilson, in reply to Sacha,

    Over 500 people have read this already.

    Yes, and pretty much everyone who writes seems to have been away on holiday so we've had plenty of pictures but not much discussion going on for a few weeks on any topic. Give it a bit more time.

    Auckland • Since Nov 2006 • 10320 posts Report Reply

  • BenWilson, in reply to Sacha,

    > The difference in entitlements and support is HUGE.

    certainly is.

    Definitely is in my son's case, having experienced before and after.

    Auckland • Since Nov 2006 • 10320 posts Report Reply

  • Hilary Stace,

    One reason for optimism. When Andrew Little was Opposition spokesperson for ACC he started asking some pertinent questions about the discrepancies between ACC and MoH funding. He came to it from the first principles of the Woodhouse report and the employment aspects - that disability is an economic survival/employment issue, and was obviously surprised at the funding differences. A few of us were going to visit him to talk more about the issues and then the portfolios changed so it didn't happen. But I think he would be open to some lobbying now.

    It is also sad that we didn't take the chance to do a fully funded service through levies like the Australian National Disability Insurance Scheme when we had it last year. The government decided last year that ACC was collecting too much in levies so they would lower them - if we had kept that level up we could have extended ACC provisions to everyone. Unfortunately, it will be much harder to impose a new levy to do that again.

    Wgtn • Since Jun 2008 • 3034 posts Report Reply

  • Ian Dalziel,

    one family has had a victory against ACC apparently
    Penny Hoare wins battle with ACC over care for disabled son

    and then again there’s more of the same unhelpful attitude by Govt departments here:
    Special needs family face life in tent

    Christchurch • Since Dec 2006 • 7231 posts Report Reply

  • Rosemary McDonald, in reply to Ian Dalziel,

    All better now, thanks to a very cleverly orchestrated media campaign.

    http://www.stuff.co.nz/national/health/65103314/lastminute-reprieve-for-family-facing-homelessness

    Waikato, or on the road • Since Apr 2014 • 1236 posts Report Reply

  • Angela Hart, in reply to Rosemary McDonald,

    After three months of the mother getting more and more worried and stressed, the last minute reprieve house still leaves several days gap between the notified move out date and access to the HNZ house. The HNZ house was slated for demolition, is it reprieved long term or will they install ramps, do modifications and then have to move out and go through the whole rigmarole all over again?
    The social worker involved, Lauree White, from Maori health provider Ti Piki Oranga is quoted:

    "I don't believe MSD realise the seriousness of some people's situations," she said.

    "Cases like this have to reach crisis point before action is taken. Housing assessments with whanau should be done in person so a client's needs are met instead of ticking a box. There needs to be regular contact with clients so a case doesn't reach crisis point."

    Am I allowed to say it's a typical government department ballsup? Because it is. Typical. Just in this case action was achieved because the desperate family agreed to subject themselves to the media attention required to find a solution, however temporary.

    Since Apr 2014 • 601 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    One reason for optimism.

    More incontinence.

    Labour, in 2005, did as Pontious Pilate and handed this over to the 'people' via the Human Rights Review Tribunal.

    Question to any Labour Party person out there...Annette? Ruth?

    How would Labour have responded on the 8th January 2010 had they been in power?

    Bluntly. ACC was always Labour's favourite. Worker's Compensation and all that.

    Ruth Dyson told Peter and I when we went to visit her in her office in 2013 " it was only a policy, not law. " So, we said, "why the HRRT and all that...why not just instruct the Ministry to drop the 'policy'? She had no answer to that, other than to say that Peter surely qualified for Individualised Funding (he does) so he can pay who he likes..".but the rule .." we said, "it was only a policy, not the law".

    You can see how this discussion would go round and round and round and round.

    Where was I?

    Oh, yes, IF. The IF specification specifically states no spouses, partners and other family members can be the carer of your choice under IF.

    So why, in late 2013, at a Outreach Clinic meeting the Auckland Spinal Unit organised for crips in the provinces, did a Spinal Unit employee ask the same question?

    Bear in mind the media coverage of this case, Bear in mind the media coverage of the amendment to the PHDAct on 17th May that year. Bear in mind that at one stage about 35-40% of patients in both Spinal Units were non ACC.

    This therapist asked Peter, "Don't you qualify for IF?" "Yes", said Peter. "You can pay your spouse or partner under IF." she said.

    "No", said Peter (showing MUCH more patience than yous truly) "you can't pay any family member, I asked Manawanui." (the IF administrators)

    So, ladies and gentlemen. If an publicly funded rehab unit who discharges people back into the community who have high care needs believes that it is routine for IF clients to pay their partners and spouses....how come Peter did not do this?

    Answer. Because such an arrangement would have demanded some level of deceit, and neither he nor myself were prepared to enter into one of these routine "backdoor deals."

    That is why we backed the 'family carers" case 100%....so no one would have to enter into these "arrangements"...and live in fear of discovery or prosecution.

    All through the well publicised hearings, and the denoument on the 17th May 2013, those people enjoying the financial benefits of keeping the funding for their care in the family NEVER SAID A WORD. They just kept on getting paid.

    Even when the shitty piece of legislation went through...they were still getting paid...and had a year's grace to make alternative arrangements.

    When the year's grace passed? Bumped off were they?

    Hah!...More belly busting laughter....yes siree they were...for a week or two...until their 'arrangement' was restored through a different Contracted Provider.. most of whom are now IF Hosts.

    So those of us with verifiable and legitimate complaints about this issue( ie, we were not in the original Atkinson plaintiffs, but the outcome directly affected us)....get nothing in the way of any resolution, compensation, nothing. We could have made a backdoor deal, but chose instead to rely on the Human Rights Review Tribunal and the Courts to clarify the issue. Establish our rights.

    Those who were willing to do a deal, got paid, and are probably still getting paid.

    I am repeating here what the lawyer from the Human Rights Commision said in the Appeal Court in Wellington in October last year at the Attorney General v Margaret Spencer hearing.

    Also, of interest, before I go...there were some complaints and claims made to the Human Rights Commission from 2008 onwards, as we heard about Atkinson.

    Those original 50 odd complaints were whittled down to 20 odd over the years.

    ( We have been through this process, and know the questions asked by the HRC and the OHRP.)

    As at the 22nd October 2014, that number had been reduced to two of us left standing.

    So...where are the other 30, 000 unpaid family carers that were going to crawl out of the woodwork and demand not only to be paid...but backpay as well?

    The 'liability' the government claimed forced them to rush through the PHDAct amendment?

    Enough.

    Seriously, this whole sorry fucking issue has been so twisted with lies and deceit from all parties that the original intent has been lost.

    Forever.

    Waikato, or on the road • Since Apr 2014 • 1236 posts Report Reply

  • Angela Hart, in reply to Rosemary McDonald,

    No, it's like Dirty Politics, it isn't going to go away- that didn't come out right- I mean that until the allegations in the Dirty Politics book are properly, honestly and openly addressed, they will keep resurfacing. The issues raised by the Atkinson plaintiffs have the same stickability. Until they are properly addressed they will keep resurfacing, they must because they continue to cause pain to too many people.

    Since Apr 2014 • 601 posts Report Reply

  • Rosemary McDonald, in reply to Angela Hart,

    ris-moh-fcc-may13.pdf

    Until they are properly addressed

    Ah! But they were addressed in the Appeal Court for Spencer on 22nd October 2014.

    The Ministry of Health hugely exaggerrated the numbers...like by a factor of at least ten.

    It was tearjerkingly awesome to hear Farmer and Butler (the lawyers) state emphatically to the Bench that the numbers were clearly wrong, that the costings were wrong and that the justification for passing the 'thou shalt not ever be able to take this issue to court' clauses in the PHDAct amendment were based on the false premise that there were tens of thousands of us who were going to bankrupt the Government with our mercenary demands.

    No, all complete and utter bullshit.

    SO, what was under the blanked out sections of the Regulatory Impact Statement?

    Read it here..(but don't print it....it will wreck your printer!)

    Waikato, or on the road • Since Apr 2014 • 1236 posts Report Reply

  • Sacha,

    Just published a companion post from a recipient of Funded Family Care.

    Ak • Since May 2008 • 19228 posts Report Reply

  • Hilary Stace,

    Incidentally, just read a lovely novel with a sub theme about disability and fighting the bureaucracy. Swedish, although probably universal. Called 'A man called Ove' - recommended.

    Wgtn • Since Jun 2008 • 3034 posts Report Reply

  • Hilary Stace,

    Wgtn • Since Jun 2008 • 3034 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    Or this wee piece of research I've been sitting on for a while.

    http://www.massey.ac.nz/massey/about-massey/news/article.cfm?mnarticle_uuid=50F8BDD8-B17D-4C92-956F-827C617A0FA1

    "For the non-ACC group, median income declined by 45 per cent over 30 months (from $36,500 to $19,900) while the median income of the ACC group increased from $40,000 to $45,900."

    So....by the gods of anarchy...household income INCREASES for spinal injured covered by ACC.

    Now, lets have a think why that might be....

    Waikato, or on the road • Since Apr 2014 • 1236 posts Report Reply

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