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Access: Disability as a wicked policy problem

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  • Angela Hart, in reply to Sacha,

    which makes me wonder what we have to do to get a government which will take a fairer and more reasonable approach.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    The gap exists because successive governments have allowed it to.

    Allowed?

    I would say encouraged.

    Divide and conquer.

    When was the last time you heard an ACC client (and I'm thinking of a couple who seem to pop up on this or that board) demand that the Government address the disparity between the two groups?

    I was thrown of the NZSpinal Trust Facebook page for calling the Ministry of Health the "Miserly" and getting into a conversation with another non ACC person about the shit deal the MOH folk have.

    We were phoned, at home, by someone from the Trust and told there would be no criticism of the Misery on their page...."because we need the funding we get from MOH'.

    Now hang on a minute. They are supposed to advocate for those with spinal injuries...ALL people with spinal impairment...or why were they getting mucho $$$ from MOH.

    Successive governments have effectively bought the so called advocates....and these paid by the government advocacy groups are the only one's who can get access to the ministers...or the media.

    I dream of a day when those in positions of privilege in the disability community can come down off their lofty perches and stand along side the rest of us.

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

  • Sacha, in reply to Rosemary McDonald,

    the NGOs are over a barrel as well. You'll note the Australian NDIS programme is having similar issues about how to resource genuine systemic advocacy without compromising the integrity of community relationships and mandates.

    Ak • Since May 2008 • 19745 posts Report Reply

  • Tom Adson,

    I can see my comments are pitted against high expertise, and probably with a lot of legal insight. I am a simple engineer who came form a trade background. That is why I understand that practical outputs are an essential part of any mix that will provide positive and real outputs, like access to theatres and public buildings.

    Further the focus of the blogs I read seem to be on the physically disabled, where as mine are on the mentally disabled. They all need our compassion and care. Like I say We, through our democratic activity can insert out national plan on a new piece of paper through to the Govt of the day. Surely if the cost of it increases GST by a % or two it would be worth it, in fact over time it may mean that taxes can be reduced as part of a part of a return on good investment. Yes it is complicated , but when I read the thought, first hand experience and passion of the blogs it makes me believe that anything is possible, Most Kiwi's are inherently good, a I dare say each one of them is connected to a family who has some form of disability, so if the national plan is explained in the right way our fellow Kiwi's might accept it as reality and be prepared to pay out. The best things that the human race ever did started out as a dream, so which of you has a dream that you believe can become reality? .

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Tom Adson, in reply to Sacha,

    To be fair, it does look like they have ‘involved’ some disabled people, families and DPOs in the creation process. Wonder how they selected them?

    I chased up the Prod Commission after seeing something on TV. I contacted them and they welcomed me aboard and have been very helpful ever since. That is how I came across this blog site. My take on it is that they think you are doing a very good job and are sincere when they say they want to know what you think and what needs to be done that can be done.

    I have made a 2 submissions, the most recent in response to the DRAFT (June 2015). It would be great of you can find the time to read, and tell me where I'm going wrong. Just search with my name.

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Rosemary McDonald, in reply to Tom Adson,

    Further the focus of the blogs I read seem to be on the physically disabled, where as mine are on the mentally disabled.

    Theoretically, it should be easier to quantify the types of supports required for those with a physical disability...personal care, mobility equipment, access to transport and the built environment.

    Those with mental disability...and this is a very diverse group...and arguably the most vulnerable...much harder to measure the types of support needed.

    BUT...not impossible. AND....there has been some very good initiatives run by some very good people.

    Have you read through Hilary's series of posts...http://publicaddress.net/access/some-aspects-of-new-zealands-disability-history/

    there are four parts in total...and a very good pocket history of the paths taken by those with (largely) intellectual/mental disability and autism.

    I hear what you are saying about Kiwis accepting that proper care and support is a worthwhile taxpayer expense....and I agree.

    Trouble is...and I am a deep down dyed in the wool, hardened in the trenches cynic...there is a hard wired attitude from government and bureaucrats that people with disabilities and their families do not know what is best for them.

    There is an assumption that all disabled people and their families are out to rort the system...and they use that as an excuse to make all supports as difficult to access as possible.

    Then they say..."we have to be accountable to the taxpayer".

    In the meantime....MOH:DSS spends over a billion dollars per year on disability supports...most of which goes through the accounts of various contracted providers and NGOs...who are seldom if ever held to account.

    In the meantime there a lots and lots of disabled people and their families who, despite the happy clappy messages we get from the Minister for Disability Issues, are doing it really hard.

    Well...there are questions being asked now...and talk about 'client directed budgets' see....http://www.productivity.govt.nz/inquiry-content/2032?stage=3, and maybe read some of the submissions from the NGOs and contracted providers.

    You are clearly a professional....I'd be interested to see what you pick up from some of those submissions, what messages lie between the lines.

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

  • Tom Adson,

    Just an Idea? We could call the extra 2% on GST the 'Good Samaritan Tax'. Legislation should ring fence it to ensure that it is used for the intended purpose.

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    Whole of govt spends more like $3,000,000,000 on disability-specific services each year. We all deserve a better return on that investment.

    Ak • Since May 2008 • 19745 posts Report Reply

  • Sacha, in reply to Tom Adson,

    Thank you, Tom. There are good people throughout government and community organisations despite the structural intertia. We need to encourage them. I'll check that out.

    Ak • Since May 2008 • 19745 posts Report Reply

  • Sacha, in reply to Sacha,

    Ak • Since May 2008 • 19745 posts Report Reply

  • Tom Adson,

    Sacha, thanks. I worked for the Govt for 49 years starting in the military, then the hospital service, then higher education and finally back with the military as a civilian working on energy policy. During that time, along with many others we had a genuine desire to be of good service. Fair pay was important, but performing well for the benefit of the country as a whole took precedence.

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Tom Adson, in reply to Sacha,

    "ah, submissions"

    It is a problem, and which ones should we read, and do the best submissions get our attention when we don't know they are there; and of course do we have enough time to read them? None of us can know everything, and a paradox of education and knowledge is that we wind up realising just how little we know.

    Many submissions I read are high quality and super slick, and they can make me envious and think; why can’t I do that? Of course the authors of those submissions deserve my respect and I become a fan. Many submissions reflect deep intellect and are full of meaning gained from dedicated research and years of discipline. However 80%+ of citizens do not have PhD’s, or posses the genetics of Albert Einstein. Most would never read any submission, and if they did they would give up at the first paragraph because of incomprehensibility... to them, it's just too tough to take in... They just disconnect and their hope suffers. “I am not part of the crowd, they think”

    My view is that if we make the effort and keep the whisk working the cream will float to the top. Like I say at some stage there must be investment followed by practical outputs, otherwise the consequential costs will be off the planet. Words are powerful things, they are mightier than the sword we are told, and for the moment they are the best weapons that we have. The next step is to use our words in an organised manner and in any quarter to recruit those who wish to get a better deal for the disabled, whatever that disability may be. Once recruited the “Good Samaritans’” can join their local battalion offering their diverse practical skills and experience, where the rubber needs to hits the road so to speak. Perhaps the Prod Commission (PC) can use their resources to kick start the process by prodding the Govt, the opposition and the minor political parties; and perhaps the Human Rights Commission and offer themselves (PC) as the recruiting office. Some of the disabled can become an effective part of the implementation team and be seen to be doing a worthwhile job. They can keep their timesheet honest (being accountable) and send it to the Treasury/IRD, via email and get a cash return for their efforts, just like every other working citizen. Those who choose can donate their Bond back to the ‘Good Samaritan Trust’. It all makes sense to me.

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Rosemary McDonald,

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

  • Tom Adson, in reply to Rosemary McDonald,

    It’s nice to see Paul Gibson giving the Govt a Prod.

    As Rosemary said we do not need permission to start creating a plan and becoming more active. The primary carers and the cared for know well what is needed and they are having their eloquent say here on this blog site. I hope the Commissioners are reading it too.

    We all struggle when a loved one needs our care, and to a point parents and family do willingly what they can. They must do their duty. For some it is tougher than others, and that is what a good reformed system should accommodate, focus on those who have it toughest. At the end though the primary carers (Mum, Dad ...usually) fade out and the loved one may be left alone. Who will care then? This is the question on my mind.

    2012 was not long ago, when “Blueprint 11, Improving mental health and wellbeing for all New Zealanders. How things need to be, June 2012, Mental Health Commission” was launched. In two years the Gospel for the new epoch will be launched, so providing the right kind of feedback will be important.

    I can understand the Govt closing the flood gate to a flurry of genuine claims, and many not so genuine ones too; and that could break the bank unless a good process that does not depend on snail mail is put in place. Those days are over, they are a dead parrot. However the river of life is drying up and the disabled along with their primary carers gasp for air, and I for one wonder what will be done with all those state houses that are not occupied, and what the cost will be for a disabled person to find an affordable and suitable place they can call their home.

    I think we have to accept that any process that may finally be implemented will have sophisticated information technology behind it, depending on ‘realtime feedback’. If it is done well it can be of great benefit, if it is done badly it will produce an excruciating pain in the backside. That is why the design must have disabled people at the centre, not administrators introducing yet another layer of bureaucracy, unless it lowers the cost and improves the service. It must also be clear that it will only be another tool in the bag, and allow the old ones to be used more efficiently and effectively. Friendly supportive people interaction will be essential. There is no substitute for that.

    We don't want to end up with the MSD job application system. If you want to experience a pain in the backside go to their web site and try applying for a simple straight forward job. I am sure they have done their best, but if you wish to be a tea person dust off your PhD in mathematics.

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Tom Adson,

    This morning I woke up with my eyes and ears wide open, and the following made me think.

    People who complain to the ACC are wasting their time.

    A million people in NZ are illiterate and that means that many solo parents refrain from filling in their annual return to the MSD. It's too complicated.

    Yesterday I advised that those who wish to apply for a job at MSD should dust off their PhD’s if they are looking for a tea person's job.

    I have made the point that the writer has expended in excess of 300 hours trying to get past Step 8 of the Recovery Plan as suggested in Blueprint 11. It looks as though I have to wait for at least two years to see the big plan implemented over the following five years.

    I look at the Treasuries schematic for their “Living Standards: The Heart of Our Policy Advice” and it reminds me of a crusaders castle, the bureaucrats’ on the inside and the plebs on the outside who are all disabled, to a larger or lesser degree. They can't be perfect.

    Their was a suggestion that the Reserve Bank stimulate the economy in order to create jobs. My take on it is that their are enough 'jobs' out there to keep a couple of battalion's going in every modest community, it's just that you can't expect to be paid for doing them.

    Does this mean the plebs and the most severely disabled have been ‘dropped’ from the system?

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Tom Adson,

    Hilary, have just read your history, part one; just another example of how adding light to our world makes us feel more humble. I wonder what we learn when we eventually meet up with the aliens'.

    Sincere thanks.

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Rosemary McDonald,

    Our Leader excels at the CCS 80th birthday celebration in Hamilton today....bugger...was at a funeral so missed him.

    BUT...he clearly has the handle on the whole disability advocacy thing....

    "I know from being in the National party that if you don't re-invent yourself, if you're not constantly challenging yourself to [fit] a modern New Zealand then you don't last and this is true for an organisation like yours as it is for the National party."

    Never let a chance go by, John, never let a chance go by....

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

  • Angela Hart,

    Wouldn't it be good if the MOH employed someone with lived experience of disability in this role?

    https://careers.health.govt.nz/jobtools/jncustomsearch.viewFullSingle?in_organid=18370&in_jnCounter=222580894

    What are the chances?

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald,

    God help us all.

    The Job Description....

    To support the delivery of first class policy advice the Policy Business Unit expects policy staff and teams to demonstrate:
    • Responsiveness to the Government of the day
    • Development of excellent public policy skills
    • A rich understanding of machinery of government


    and nowhere, NOWHERE do I see a mention of the NZ Disability Strategy OR the United Nations Convention on the Rights of Person with Disabilities .

    AND...I see "further information about this position please email kathy_brightwell@moh.govt.nz " who I understand was one of the authors of the Funded Family Care Policy.

    Time to bend over and kiss our collective posteriors goodbye?

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

  • Hilary Stace, in reply to Tom Adson,

    Thanks Tom. I have largely been out of the social media loop for the last few days at the Altogether Autism conference in Auckland. There were some good presentations by those with lived experience and some by people trying to do their best in challenging circumstances. Also some slightly defensive ones by overworked and under-resourced public servants. Obviously too hard to work across silos. Next conference I would like to see public servants from a variety of agencies on a panel together answering the challenge - how can we work together better to make a difference for the disability community?

    Wgtn • Since Jun 2008 • 3227 posts Report Reply

  • Tom Adson, in reply to Rosemary McDonald,

    I heard the United Nations Convention on the Rights of Persons (although I don’t think disabilities was mentioned) referred to on ‘Nation TV” a moment ago (mid-morning Sat, 25th July 2015). It was suggested that the UN convention may have been breached in relation to the SERCO debacle. If the public debate moves on there is no reason why Bob Dylan’s rolling stone might not gather momentum and collide with the topic of disability and all the issues around it, suitable social housing being one of them. This may be another example of a breach of the UN Convention.

    Prison is one form of social housing, but a very small part of it and at the negative end. The very expensive end. Many prisoner’s have mental health problems. They shouldn’t be in prison.

    Many of the disabled people who have never transgressed the law are imprisoned in more subtle ways by stigma, discrimination and prejudice, and the incapacity imposed by their condition. The physically disabled are in some ways easier to help because they are clear to see, but the psychologically impaired are often invisible, so they are easily or even conveniently ignored. However the new epoch has something in its favor and that is the hope that can be injected into our blogs.

    It appears that messages covering billions of wavebands (and millions of dollars too it seems, and I am not objecting to this) can be transmitted to the ‘aliens’ via millions of computers, so I can’t see why the illuminated minds of earthlings can’t do the same for the disabled who are planted on terra firma. If this is done the chains and bonds that cramp out thinking might possibly be thrown away, and the disabled will then have a chance to feel the freedom that is embedded within our Bill of Rights Act.

    Perhaps a good ‘God’ might be Sir John Kirwan, if he would be prepared to take it on. I am sure God would be on his side. He doesn’t have the “blues any more”, so it would be interesting to see how he did it, and is managing to move on with his life towards better things. Sir John’s greatest asset would be his ability to wrap the right team around him to ensure he like other disabled people are at the centre of those of us that care.

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Tom Adson,

    "Obviously too hard to work across silos. Next conference I would like to see public servants from a variety of agencies on a panel together answering the challenge – how can we work together better to make a difference for the disability community?"

    Perhaps my most recent blog may help answer your question. Perhaps John Kirwan could sit passively in the 'alien' Chair, and be kept free from pressure and stress and general discomfort. I think his presence alone would be enough to keep the panel focused on "The Disabled First", and what their real needs are.

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Joe Wylie, in reply to Tom Adson,

    Prison is one form of social housing, but a very small part of it and at the negative end. The very expensive end. Many prisoner’s have mental health problems. They shouldn’t be in prison.

    Thank you and a big amen to that, Tom. Superb post.

    flat earth • Since Jan 2007 • 4593 posts Report Reply

  • Rosemary McDonald, in reply to Tom Adson,

    Many of the disabled people who have never transgressed the law are imprisoned in more subtle ways by stigma, discrimination and prejudice, and the incapacity imposed by their condition.

    A word from the wise Tom...don't ever be tempted to point out that prisoners are better resourced than those with disabilities. EVER.

    Even though it is true, and that prisoners still have their rights to take their issues to the Courts for judicial review, some on the left take real umbrage at one pointing this out.

    As I have learned to my cost.

    Over here, http://thestandard.org.nz/, where I wander occasionally, there is a post up about the courts telling the Government that not allowing prisoners the vote is "BAD law". This judgement is being hailed as a NZ first...the courts giving the Government the smack down on legislation it has enacted that breaches NZ Bill of Rights Act.

    This is not so.

    There was a couple of cases recently that the Courts told the Gummint..."you did BAD.", but because this was about people with disabilities...went completely under the radar....like the cases never happened.

    I despair.

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

  • Rosemary McDonald, in reply to Hilary Stace,

    Also some slightly defensive ones by overworked and under-resourced public servants.

    Hah! Those public servants who are happy to take the dollars to meet the job description....

    "• Responsiveness to the Government of the day
    • Development of excellent public policy skills
    • A rich understanding of machinery of government"

    Now...I would put up a link to this...but bugger me if it hasn't been put behind some sort of security screen since yesterday. Oh dear! Am I in the shit, again?

    Clearly, those 'overworked public servants" have been checking up at who has been reading Job Descriptions and perhaps making VALID criticisms...like NO mention of the UN Convention for the Rights of People with Disabilities which...if one of those "overworked public servants" wandered over to the ODI they would find it should underpin ALL government policies involving disabled people.

    Coming down off my high horse Hilary, Natrad interviewed someone regarding the AA conference...I won't link to it for obvious reasons...very interesting.

    When I've calmed down a bit, it would be good to have a conversation about better collaboration between disabled people (and family) and public servants.

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

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