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Access: Disability as a wicked policy problem

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  • Marc C,

    In two other posts on PA I recently presented this new information, raising serious questions about statements used in a position statement of the RACP and AFOEM called ’Realising the Health Benefits of Work’:
    https://www.nzma.org.nz/journal/read-the-journal/all-issues/2010-2019/2015/vol-128-no-1425-20-november-2015/6729

    PDF download:
    https://www.nzma.org.nz/__data/assets/pdf_file/0005/45905/Purdie-1874FINAL1425.pdf

    That was basically proving wrong information or statements often used by Principal Health Advisor Dr Bratt, working for MSD and WINZ (see slides 22 and 23):
    http://www.gpcme.co.nz/pdf/GP%20CME/Friday/C1%201515%20Bratt-Hawker.pdf

    “Evidence” and statements contained in the above position statement have often been used to justify re-assessment of sick and disabled for work capacity, and this was also part of “advice” used for formulating welfare policy that resulted in reforms that took effect from 2013.

    Further to earlier comments re Gordon Purdie’s criticism of statements in the AFOEM’s position statement on the health benefits of work (strongly promoted since 2010/11 also then used as support to welfare reforms in New Zealand), it appears the Royal Australasian College of Physicians (RACP) and the Australasian Faculty of Occupational and Environmental Medicine (AFOEM) are now having some doubt about their own “research” sources.

    The document ‘Realising the Health Benefits of Work’ is now “under review”, it seems:
    https://www.racp.edu.au/advocacy/division-faculty-and-chapter-priorities/faculty-of-occupational-environmental-medicine/health-benefits-of-good-work
    (see note behind the link for the PDF on their website)

    Since October 2013 they have also seen a need to qualify earlier statements by stressing now that it must be “good work” that can have health benefits.
    https://www.racp.edu.au/docs/default-source/advocacy-library/pa-what-is-good-work.pdf?sfvrsn=4

    And since then they also make available a PowerPoint presentations, clarifying that some of the information and statements first presented at the launch of that position statement were not quite what they seemed:
    https://www.google.co.nz/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwii0Ljd5fHMAhXE3aYKHSdDB9cQFggaMAA&url=https%3A%2F%2Fwww.racp.edu.au%2Fdocs%2Fdefault-source%2Fdefault-document-library%2Fhealth-benefits-of-good-work---dr-warren-harrex---afoem---evidence-update.pptx%3Fsfvrsn%3D0&usg=AFQjCNEQCCDxwaau1NOzo8W27RMZ_GdAsw

    Read the comments:
    “Why update the evidence?”
    “Consensus statement and evidence not updated since 2010.”
    “Some of the assertions in 2010 are associations, not cause and effect.”

    So there we are, bold claims first made, when “experts” like Mr Mansel Aylward from the UK came here to promote all this, are now continually being reviewed and added to or corrected. This is simply paddling back from so-called “evidence” that was used for justifying welfare reforms also significantly affecting sick and disabled in New Zealand, that took effect in July 2013!

    Policy should be carefully drafted and based only on solid, robust, well reliable evidence, it seems the AFOEM and RACP, and with their reliance on them, the NZ Government shot themselves in the foot with rushing ahead and drawing too early conclusions.

    Recommended read:
    https://nzsocialjusticeblog2013.files.wordpress.com/2015/09/msd-dr-bratt-present-misleading-evidence-on-worklessness-and-health-post-09-08-15.pdf

    Auckland • Since Oct 2012 • 437 posts Report Reply

  • Hilary Stace,

    If anyone needs an example of a disability wicked policy problem, with very serious and negative human consequences, there is one on the front page of the Herald today and on-line (and yay for the new generation of investigative journalists like Kirsty Johnston). I'm writing a separate Access post about Ashley and his situation (as I have had a small involvement), but in the meantime here is the shocking story.

    http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11650165

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    Dave says he is fearful his son will give up hope of leaving Tawhirimatea.

    "He's lost control. He's had everything stripped from him. His dignity taken from him. Our dog is treated better at the kennel. I think most people would have committed suicide."

    Occasionally, he stills asks about getting out. "We say, 'we're still trying, Ashley'. But you feel pretty shit about it."

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

  • Hilary Stace,

    Updated during the day. Opposition parties now involved and the Minister being asked questions.
    http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11651932

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Sacha, in reply to Hilary Stace,

    Capital & Coast spokesman Nigel Fairley disputed the case was a breach of human rights. He said in cases such as Ashley's there was always tension between protecting and upholding the rights of the individual, and the rights of members of the community to protection and safety.

    I don't have words rude enough for that attitude. The problem here is not so much about funding as the utter inability of health agency managers to handle distributed risk let alone risk/benefit.

    Their focus every working day is protecting their superiors from adverse attention. The timidity they therefore apply to the slightest suggestion someone might hurt themselves or others clouds their judgement. They are unwilling to let other parties take on risk, and they lack the most basic skills to share its management.

    What is the point of having bodies like the Ombudsman or Human Rights Commission when in cases like this they prove toothless?

    Ak • Since May 2008 • 19740 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    as the utter inability of health agency managers to handle distributed risk let alone risk/benefit.

    They should, perhaps, consult their fellow bureaucrats over at Corrections...

    A "high risk" sex offender housed metres from a Auckland school...

    Corrections consider the man "a very high risk of imminent violent offending" and applied for a public protection order to make him live on prison grounds after his compulsory release from prison.

    That was turned down by a High Court judge, who instead imposed an extended supervision order for seven years, including one year of intensive monitoring.

    "A significant amount of preparation goes into approving a suitable address. No address would be approved if we considered it presented an unmanageable risk to the safety of the community."

    Security measures included a 2m fence, locks and alarms, and alerting five school principals and immediate neighbours, Cave said.

    The manager told him the arrangement was permanent and the man was under 24-hour guard by two people and monitored by a bracelet.

    I don't understand how and why it is that someone who has committed a really nasty violent crime...potentially ruined the lives of others...can have such resources devoted to establishing and maintaining their right to 'freedom'.

    To my knowledge, Ashley has not been convicted of any crime, and yet...

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

  • andin, in reply to Hilary Stace,

    the shocking story.

    Its a lot more than that.
    I'm sickened.

    raglan • Since Mar 2007 • 1890 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    Follow the money: check how readily funding to 'rehabilitate' prisoners gets through Cabinet vs any similarly-aspirational disability funding. We get trials, they get the whole thing.

    Cos they were once worth it.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Hilary Stace,

    I'm afraid the seclusion story gets worse. Ashley one of the lucky ones because he has advocates. More from Kirsty Johnston today
    (and Minister subtly blames family for Ashley as if they are not cooperating with the DHB)
    http://m.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11652421

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    Cos they were once worth it.

    And right there Sir, nail gets hit on head.


    Banging on and on about 'rights'...who gives a shit? Really?

    When the government knifed us in the back over the family carers thing, other than here on PA and over at Pundit, most folk simply failed to grasp that here was a declaration from the New Zealand Government that disabled New Zealanders and their families should not expect the Human Rights Act and the New Zealand Bill of Rights Act to apply to them.

    At that point, each and every disability 'advocacy' group should have told the government where to stick their nice funding packages and organised mass protests.

    Told the government where to stick its Disability Strategy.

    Refused to play the game.

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

  • Angela Hart,

    apparently Godzone needs defending to the tune of 20 billion (over 15 years). http://www.radionz.co.nz/news/national/305878/nz-defence-force-to-get-$20bn-upgrade
    This is clearly a much more important and pressing problem than poverty, homelessness or making proper provision for Ashley and the many others in similar illegal, immoral, unhealthy and inhuman situations.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Sacha,

    Hilary has a new post about the activism around Ashley.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Sacha,

    Good summary of the potential to expand ACC to cover all illness and disability.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Hilary Stace, in reply to Sacha,

    The more people advocating for this the better. Interesting how he is focussing on the ACC v MSD funding model here (so talking about adults) rather than ACC v Ministry of Health funding for disability support generally.

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Sacha, in reply to Hilary Stace,

    Get the impression he's not clear how many other parts of govt are involved.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Sacha,

    Education system fails to meet disabled students needs, threatens to prosecute family if he's not sent to boarding school 3ookm away from home.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Angela Hart,

    This is a 9 year old in a good family, I’m with Trish Grant
    “Gone are the days when we sent these kids off to special places. We’ve closed down institutions and this boy has a right to be at home with his family and go to his local school,”

    Sure, they’ve tried a lot of things. What they don’t appear to have done is study the child, work out what he needs and how it could be delivered for him, and then put it in place in his present environment. It’s difficult to see how removing him from his support base and placing him in a situation where he is under extreme pressure to conform could do anything other than damage his spirit and eliminate the trust he still has in his parents and friends, and in people generally. (textbook for creating a loner?)
    All the talk about child and person centred approaches, but when the chips are down it’s fit into our system or else.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Russell Brown, in reply to Sacha,

    Education system fails to meet disabled students needs, threatens to prosecute family if he’s not sent to boarding school 3ookm away from home.

    God, this case rings so many bells for me. We had a terrible GSE caseworker who tried to bully us into sending our son to a residential school. She was obsessively focused on his behaviour and seemed to have no understanding of the possible reasons for it.

    I struggle to see what good taking an autistic child – who will be particularly sensitive to unexpected and unwanted change – away from his family and sending him hundreds of kilometres away would do. What exactly will that school do differently that can't be done at an ordinary school? Is there an underlying assumption that the parents are to blame? We certainly copped a bit of that.

    Auckland • Since Nov 2006 • 22848 posts Report Reply

  • Angela Hart,

    What exactly will that school do differently that can’t be done at an ordinary school?

    It will have much better ratios of staff to student and existing (tried and true :-) ) policies and procedures for behaviour management. It would attempt to individualise a programme for this child but that would be based extensively on what the staff already think they know from their experience with others. One big issue is that the school's actions would not be visible to the parents, they just would not know how their son was being treated. And their knowledge of their child would not be utilised, which is just plain stupid.

    My daughter was enrolled in a physically handicapped unit, as they were called back in the day. She was mistreated even though we lived reasonably close, and she was too upset and frightened at the time to tell me. I was not allowed to be involved with her unit until they considered she had settled in, that is, accepted her situation. I strongly believe that parents must be involved closely with their children and their children's education, especially if the child is in any way significantly different from average.

    I think sometimes there is a tendency to blame parents for exacerbating a child's negative habits or behaviour, and placing the child in a situation where the parents are distanced theoretically permits retraining of the child without interference.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    rather than ACC v Ministry of Health funding for disability support generally.

    Interesting, and also disappointing, that he focused on the Trevethick case.

    We were frustrated that the case took up the issue of vehicle funding when there were much more important areas of disparity that could have been highlighted.

    For instance....an ACC funded crip wheels confidently into a public toilet, whips out a sterile packed, single use only catheter, feeds it up their urethra into their bladder and drains the urine therein. Removes catheter and discards. Goes about their merry way.

    A Misery of Health funded crip wheels (with less confidence as the chances are the chair is not of the same quality) into a public toilet and removes from a snaplock bag the previously sterile packed, single use catheter, feeds it up their urethra into their bladder to drain the urine therein. They then use the sink in the public toilet to rinse said (supposedly single use) catheter and return it to it's snaplock bag to be used the next (up to 10 ) times. Leaves public toilet knowing that the chance of a serious bladder or kidney infection is high.

    This is a real comparison. A situation we discussed at a recent meeting of spinal impaired organised by The Association for Spinal Concerns....an organisation which purports to represent ALL Kiwis with spinal impairment, including the 40% who are not supported by ACC.

    Of course, the conversation was between the three spinal impaired at the 'do' who were not funded by ACC. Despite having handed out a flyer outlining the measured disparities between the two groups (from government funded research) only one of the ACC funded crips deigned to hold a conversation with us about the issue....and to be honest....that guy was a FOAF anyway.

    A copy of the flyer was (again) emailed to TASC....as yet no response(again).

    We do try to advocate, in our own pathetic way, but when the two groups in New Zealand representing spinal impaired refuse to take up this issue....we are farting in a strong wind.

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

  • Angela Hart,

    I would think that the Health and Safety arm of the public health system should have something to say about this ridiculous situation. It must also be increasing costs because UTIs cost money to treat, especially if they result in hospitalisation.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Angela Hart,

    It must also be increasing costs because UTIs cost money to treat, especially if they result in hospitalisation.

    Yes...and especially in the case of those born with spinal impairment, repeated bladder and kidney infections can lead to permanent kidney damage. Can lead to loss of kidney/s, limbs, and ultimately shorten life.

    And if feeling like crap pretty much all the time becomes too much....there will be PAS to solve all our problems.

    Result.

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

  • Sacha, in reply to Rosemary McDonald,

    Similar rubbish with continence supplies apparently. Someone in Thorndon decided that disabled/older people only piss themselves twice a day max.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    and ultimately shorten life

    result

    Ak • Since May 2008 • 19740 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    Similar rubbish with continence supplies apparently. Someone in Thorndon decided that disabled/older people only piss themselves twice a day max.

    Oh yes indeedy.

    Luckily, we can buy the extras we need.

    One wee paradox that we highlighted in our little flyer (aimed at raising the consciousness of our ACC cousins) was the fact that the median household income of Miserly of Health spinal impaired was half that of the ACC crowd….and they are not having to use their own funds to augment supplies. ACC are more than generous.

    Arrrggh….I’m a bitter, miserable old so and so….

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

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