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Beneficiary for life: the joys of permanent disability in present day NZ

Written By: - Date published: 6:42 am, November 10th, 2017 - 111 comments
Categories: benefits, class war, disability, health, human rights, welfare - Tags: , ,

This Guest Post is by Kay, a long time commenter at The Standard. 

Living with any sort of disability full time isn’t exactly what any of us sign up for. But these days, for many New Zealanders a disability not only entails managing the actual condition, it means having to contend with ever-increasing hostility from WINZ, politicians and most devastatingly, from our fellow citizens. On top of that, increasing cuts to the public health system and access to necessary ongoing treatment and care, and more recently access to suitable housing. Not to forget the ceaseless benefit cuts.

I’m writing this using my own experiences but am pretty certain I’m speaking for many.

I have very uncontrolled tonic-clonic epilepsy (grand mal in the old terminology).  I’m in the small sub-set of people with epilepsy who are simply not able to hold down regular paid employment due to the frequency, nature and complications of my seizures and medication. I’d like to emphasise that a lot of people with epilepsy are quite capable of working, employers take note. In my case, hell, I wouldn’t employ me so not holding any grudges there. I’ve had a go many times and it never ends well.

So for official (read: WINZ) purposes I’m disabled, ie unable to regularly work at least 15 hrs a week. I’ve been on Invalids Benefit since 1990- just in time to have it slashed by a certain R Richardson- and now SLP. There’s been some part-time work along the way but I’ve always stayed on at least the core benefit. I’m one of the lucky ones, as in I can pay the rent and bills and aren’t starving-yet. But I’ve also been bailed out by a family member more times than I can remember now, and without her I would be in serious shit.

To anyone who’s still deluded about benefit increases (and I remind you again that the Natz did NOT increase benefit rates across the board contrary to propaganda), read this.

Between 1994 and January this year there was only a $10 difference in my rent. I know, bloody lucky there. In that time I was getting  Invalids, Accommodation, Disability and a bit of Special benefit. Even allowing for subtle ups and downs of the supplement benefits, in 17 years my TOTAL benefit increased by a grand total of $83/week. It’s effectively been frozen for 25 years so in real terms going backwards all the time.

This is bad enough for anyone who has to meet just everyday expenses. Being long term disabled can get bloody expensive, with medications (@$5 per item plus any unfunded drugs); physiotherapy and other types of therapy- not necessarily available through the public system; taxis to get around because physically unable to take buses or drive; special diets; keeping warm etc etc. You get the idea?

I remember back in the 90s, even after the brutal cuts being quite able to get the treatment I needed, taxies when I needed to use them, pay the bills and even have a bit of money left over. But then, power was 1/3 the price, medication was still free…

Despite my earlier statement re paying the bills – well I can, but I’m part of the heat/eat/treat deciders and frequently juggle resources. I’ve stopped taking an unfunded drug based on cost and like so many others am terrified of turning on the heater. I’ve also been left with permanent injuries from seizures as a result of not being able to pay for the physio treatment. At $30-35 surcharge even on ACC it’s just not possible. That’s just everyday reality. One physio treatment or eat for a week? (yes it’s possible to eat for a week on $35, less even. Hint: always keep well stocked up with brown rice, tinned beans, tinned chopped tomatoes and frozen veg. It can get a bit boring but nutritious and filling).

I don’t remember a lot about the beneficiary bashing going on in the 90s, only the cuts, and taking part in the massive protest in Queen Street. Maybe it’s a good thing I’ve got a lot of memory problems at times! Unfortunately the last 9 years are still crystal clear. Coming to the realisation that so many of my fellow citizens genuinely despise my existence because I’m on a benefit, never mind the reason I need to be. Or the reason ANYONE needs to be.

In a way it’s not even what the politicians were saying- I’m more angry at the MSM for giving them the platform. The media have always been happy to go along with a good bene bash – it’s great click bait and they don’t even have to do any journalism- just print the government press release, no questions asked. I was pretty stupid for a few years, reading the Trade me and Stuff comments. Some are obvious trolls, but a lot aren’t.

The divide and rule campaign has been incredibly successful, I’ll give them that.

Until a few years ago I wouldn’t have considered treating people on SLP as a separate group because it wasn’t really necessary. We were actually treated ok for the most, this current nightmare began in 2009. It’s no coincidence WINZ has become a seizure trigger for me (never was before 2009) and I’ve had 5 hospitalisations so far as a direct result of run-ins with them. Chronic illness requires minimising stress and they are not helping the situation for anyone. It would be really interesting to work out just how much their behaviour has cost the public hospital system. I’m currently going without money I know I’m entitled to because it’s not medically safe for me to go anywhere near them.

Disabled/ill on SLP long term do need a separate system within WINZ as Super does, including not being forced to queue for ages at reception when you’re wobbly or injured because if you don’t hand in the paperwork your TAS won’t get renewed and you can’t pay the rent…

Welcome to our world.

Note: Special Benefit and TAS (Temporary Additional Support) are weekly supplementary benefits available to beneficiaries experiencing financial hardship. TAS replaced Special Benefit in 2003.

 

111 comments on “Beneficiary for life: the joys of permanent disability in present day NZ”

  1. patricia bremner 1

    Kay, I will send this item to several ministers and know there are people out in the public who are aware of the dreadful bind you and many others are in.

    This is one of the many things we hope kindness and empathy in practice will change.

    Thank you for sharing.

  2. Belladonna 2

    I can so relate to this Kay having had rheumatoid arthritis for 18 years and have been punished by successive governments for years because I got sick. Hope life gets better for you.

  3. Delia 3

    I sympathise with Kay on many issues raised here but I will comment on how difficult it is to wait long periods in WINZ if you are disabled. In eighties, nineties and even into the 2000’s those on Invalids were seen in different area of WINZ, to be attended to quicker with some allowance given, for the difficulties attending if you have a disability.Now It is very hard to sit in a general area. People have pain, sensory issues, mobility problems. No allowance is made for this by WINZ.

    • tracey 3.1

      Thanks for speaking up Delia. WINZ is a system not unlike conveyor belts at a slaughter house. The good operation of tge conveyor belt and stun gun is what matters.

    • cleangreen 3.2

      Delila you are so correct about WINZ now being draconian.

      I came home after suffering with a workplace accident overseas, and was ruled by that country as permanently disabled.

      In 1999 when I returned I was treated with civility and respect by WINZ then.

      Later when the National government came into power in 2008 I was left with less and less support from services to the point hat I felt like WINZ wanted me gone.

      It was an ugly time that must change, as we are all given our human rights to expect to be treated with repect and dignity.

      I am confident this new government will change this current draconian WINZ system of hard treatment towards the disabled, as it was not our chioce to be disabled in the first place so no blame should be pointed upon us.

      • OnceWasTim 3.2.1

        @Cleangreen.
        I know you’re in the twilight years, but keep up the good work. Progress is actually being made. Just see MPI as the first step. I’m not quite sure which comes next. Probably MSD but maybe MoBIE. NZTA would be another candidate, Munstry of Health and others.
        Then there’s the over-arching problem of the Public Service’s ‘upper class’ generally – often imported from WASP origins, and now worried that their comfort zones might soon be challenged. One or two might actually be shitting themselves about now. (And that’s just in the gubbamint sector)
        Keep it democratic!

  4. One Anonymous Bloke 4

    When are human rights abuses going to be prosecuted in New Zealand?

    Until sadistic Ministers face prison they will never stop.

    • cleangreen 4.1

      100% OAB we are all responsible for our actions they claim, so they should be held to account.

      The new government must restore the past labour Gov’t levels of funding “legal Aid” for citizens making these legal claims, so that any case of abuse of any kind can be supported by Government in a court of law.

      That “legal Aid” offer in ‘abeyance’ should ‘persuade these horrible employees in WINZ to behave toward us civily by giving us due dignity and respect.

      • tracey 4.1.1

        Can you outline NZF’s intentions for welfare provision, service reform and disability?

      • One Anonymous Bloke 4.1.2

        It’s the law that’s horrible. For the most part, the abuse is legally sanctioned.

        Parliament could fix that by entrenching the Bill of Rights Act. Some other legislation would also need to be repealed and/or re-drafted and passed into law.

        Once the human rights of all citizens are genuinely protected in law, the abusers have fewer places to hide.

    • Until sadistic Ministers face prison they will never stop.

      QFT

      I’m looking at you David Shearer and others that have ridden the Bene Bashing gravy train.

  5. tracey 5

    Thank you so much for this post. Only yesterday I commented on the ridiculous demarcation drawn between disabled by an accident and not.

    Those born with disabilities which mean they cannot work, or employers wont take on need to be at least on a par with Super.
    FFS this is not the 1800s. On what freaking planet do we call ourselves civilised and a glowing econony when we say to our most vulnerable

    – the most you get is survival. Thriving is not an option for you –

    I know folks with disabilities and no family with the wearwithall to help who only get to take a day trip if a charity offers to help. And that is not even once a year.

    To those people who read this and are thinking

    – oh I agree, I think people like you should be helped. Its the lazy bludgers I object to-

    Now ask yourselves who you just voted for? Cos when you vote for a party that classifies and treats any beneficiary as a lazy bludger you just condemned a very large section of fellow kiwis to a subsistence life.

    We are sentencing people like Kay to prison but allowing them to think they are free.

    Shame on every one of us for standing by while it happens.

  6. Kay 6

    Tracey, I remember when Paula was doing her reform thing and the Natz were falling over themselves publicly to acknowledge there would always be a group of people unable to work due to illness/disability and they’d be looked after, that’s what the welfare system was for, something along those lines. In fact, they couldn’t say it often enough! I do remember my cynical laughter.

    I’m very upset about the way we’ve somehow become “deserving” vs “undeserving” which of course is a load of bull. Of course everyone who reads this site knows full well the reasons people end needing the welfare safety net-or what’s left of it- so I don’t need to defend it. But I hate the idea that any one category of benefit is more “deserving” than another.

    Somehow the public mindset towards ALL of us has to be changed, but I’ wonder if it’s too ingrained now. While I really don’t like playing the disabled card and don’t think it should be, when it comes to pointing out serious problems with WINZ, the general unenlightened, even redneck population are more likely to sympathetically respond to “that” word; in the same way adding “child” in front of poverty makes them feel a slight twinge of something they’d otherwise easily ignore.

    • tracey 6.1

      Fair points. It appalls me that we turn people into shells of themselves as they have to beg and prostrate themselves for basic living. And the ” keep growing the economy” BS that we are told will fix this is dishonesty at its worst. There has been plenty of time for that be the case and yet here we are, villifying people for their circumstances which are by health, birth, accident or crime.

      If you had been badly assaulted and this had resulted in your chronic epilepsy someone would have set up a givealittle page or started a trust to assist you.

    • Karen 6.2

      The purpose of talking about deserving and undeserving poor is designed to vindicate cuts in welfare and to make those who have never had to rely on welfare feel justified in their antagonism towards those who do. This country should not tolerate poverty full stop. I am also unhappy with talking about reducing child poverty while ignoring the issue of adults (like you) having to live in poverty.

      Can we change the mindset of the general population? I hope so. My feeling is that the culture of WINZ needs to be changed urgently and I think this will be done with Carmel Sepuloni in charge (she has already signalled this). Increasing basic benefit rates is also urgent IMO and, while this will be a harder battle, it is not unsurmountable. The particular problems for those on longterm benefits unable to work at all is a problem that is usually ignored and also needs to be addressed.

      Your post is going to be a very useful tool when lobbying MPs.

      • weka 6.2.1

        “Your post is going to be a very useful tool when lobbying MPs.”

        +1000

        Apparently Grant Robertson got pinned down at a disability forum in Sept and said that they would look at increasing SLP. I’ve seen one other reference about raising the income of all NZers. So I think the door is opened a crack and it’s a good time to lobby both on the government leading on the cultural stuff as well as benefit rates.

        (raising SLP without raising other benefits has issues, but I’m guessing that the question was specifically about SLP because of the meeting context rather than necessarily being raise SLP on its own).

      • tracey 6.2.2

        Yes. Yes. Yes. By labelling as they do, they give comfort to the smugly self righteous who defraud the revenue by doing and paying for jobs in cash, for demanding personal accountability from the poor and vulnerable but excusing Cabinet Members from it, who can afford lawyers and accountants to “organise” their affairs and enforce their rights…

        Yes I am angry

  7. keith ross 7

    I agree wholehearted with the article above and want to ask “what about those of us with long term/chronic injuries that are on ACC?” I suffer chronic back pain after failed surgery and am constantly fighting with ACC. They have been told to leave me alone for the stress is killing me and they reply with things like “you have 24 hours to reply to this notification” and other stress inducing tactics trying to wear me down.when I complained about their dr examining me with direct recorded evidence that he lied in his official capacity to me , they decided to increase my examination time from 1 to 2 hours instead of using one of the many other drs available for the job just to pressure my family and I.
    clean out the top management and stop linking KPIs to how many you can get off the books rather than how many you can help.
    regards
    stressed out ACC “client”

    • weka 7.1

      Yes, ACC have their own set of things to be held accountable for. That one is on successive govts too.

  8. Thanks for the post – I’m sorry about the way you and others have been treated – we need to look after people, we need to value all people and we sure as hell need departments to start and finish with compassion.

  9. RedLogix 9

    A sorry read; and all too familiar. The original ACC proposal was to gradually expand it to include non-accident disability as well, but somewhere along the line some tory bastards probably flushed that idea as well.

    Perhaps the one bright development on the horizon is growth of community organisations that provide managed housing, medical, and social care. We encountered one such organisation in Thames a few months back, that looks after the needs of the intellectually disabled. Even though we didn’t fit their client profile, it looked a very attractive setup with a lot of good things going on.

    They won’t all be brilliant, or suit everyone’s needs perfectly, but it doesn’t take too much imagination to see how well they might work for many.

    • tracey 9.1

      RL, by non accident disability do you mean occupational disease or gradual process injury? Or do you mean something else? I know they offer compensation to proven victims of sexual abuse on the basis of mental suffering but wasn’t aware that non work related suffering/illnesses were otherwise included at any time?

      • RedLogix 9.1.1

        I just meant all the forms of long-term disability that ACC doesn’t cover at present.

        As I understand, the original designers of ACC originally intended it to cover a much broader range than it does at present. It never came to pass.

        • tracey 9.1.1.1

          Thanks for clarifying RL. I have a particular interest in ACC and like employment law it is one area that changes a lot due to political changes of govt. My understanding was that Woodhouse stuck to work related but it is a while since I read his amazing report. My recent reads are revisiting PWC in 2008 and a report to the Nats in 1998

    • Perhaps the one bright development on the horizon is growth of community organisations that provide managed housing, medical, and social care.

      No, that just highlights the blight that is our government now.

      Private charities don’t work anywhere near as well as the government simply getting in and doing the job properly. We simply shouldn’t need private charity.

      • tracey 9.2.1

        OR the government adequately funding organisations which have expertise as NGOs. For example, I know of a youth drug and alcohol addiction center in regional NZ with great results but its MOH funding has to be applied for every year.

        There is an organisation in Auckland which counsels convicted/reported pedophiles, as well as young children, and adults who have not offended but are self reporting “inappropriate” thoughts toward children. This organisation can show that 92% of the people it counsels do not commit another (or any) sexual offense. That is an outstanding record. Of course it needs to be monitored but 1 year funding cycles place too much stress on an organisation and diverts resources to finding money rather than doing core work.

        • marty mars 9.2.1.1

          Yep agree. It is the governments job to fund and if necessary train and pay people to help. I work in mental health – not enough money/funding even though proven results with very challenging individuals.

          I do agree that, with government support, this is a community solution. The communities around everyone who needs support need to grow to widen and encompass all of society. For instance how can any building be allowed that doesn’t accomodate wheelchair or mobility challenges? Why are these allowed to exist.

          • RedLogix 9.2.1.1.1

            For what it’s worth marty, all the new units we built are universal access, plus a host of other design features. Started doing this 16 years ago … and I agree there’s zero excuse for it not to be totally normalised by now.

            If you’re doing it from scratch the biggest items is slightly wider hallways and doors. The rest is pretty much just good design.

          • tracey 9.2.1.1.2

            And how did Joyce get away with excusing Chchch rebuild commercial premises from these access requirements?

      • RedLogix 9.2.2

        @DtB

        Usually these organisations receive substantial funding (if not all) from some govt source or another. And for reasons I’m not disclosing here, I have a long term and close association with another ‘private charity’ that does astoundingly brilliant work in every possible respect. And in a fashion no govt dept could hope to emulate.

        I’ve no problem at all with the idea of govt doing a good job directly, but by nature they tend to be ‘once size fit all’.

        • tracey 9.2.2.1

          Maybe I am naive but I consider a charity to be different to a PPP type arrangement. Closer to NGO type affair which in my affair is like a Ministry subsidiary in a way?

  10. smilin 10

    Yes it is a very real situation for people with permanent disability that takes them out of the mainstream of employment and a very accurate article by you Kay of the last 30 years of govt help for those who find themselves in a similar position to you .
    From my perspective if we hadnt had a Labour govt for 9 years or so the difficulties of being disabled in this country would have been absolutely abysmal and a crime against NZers
    I wont go on as Kay has highlighted the chronic behaviour of the NATZIONAL govt thru her life but really we as a nation really need to take a good hard look at how we treat the disabled and less capable in this country because for many years more than the last 30 it has been fucking shocking digrace and for cunts like Key to get kthds for doing SFA the ordinary citizen in this country who paid big time to give ingrates like him a country to live in is appalling

  11. adam 11

    For the sake of my health Kay, I walked away from work and income and the invalids benefit. For that, I have a wonderful partner to thank.

    It is not worth the stress (which makes my condition vastly worse) dealing with an agency that brutalised you. And it has been a brutal agency ever since it became an ideological storm trooper for neoteric liberalism.

    I have some dealings with them via accommodation supplement and disability allowance, because at 5 dollars a prescription, I have no choice. But I’m able to keep it it an absolute minimum. How long that can last is anyone’s guess – probably not much longer though – with the rate of inflation via the housing rental market running somewhere between 5-20% in Auckland.

    I’m not alone in walking away. As work and income resembles a partner who beats you, and like that relationship, it’s safer to remove yourself from the situation.

    • Kay 11.1

      Adam, you’re one of the lucky ones. I’m so pleased you were in a position to escape.

      Obviously not an option for the vast majority of us, but as I alluded to in my post, there’s many of us minimising our contact by deliberating not getting money we’re ENTITLED to under current legislation- not matter how much we need it- because it’s literally life threatening to deal with WINZ.

      I voluntarily surrendered the last few $$ of my Special Benefit a few years ago after an appalling run in with a “case manager” over it landed me up in hospital following multiple seizures. That SB covered the cost of an unfunded drug at the time but it just wasn’t worth the grief any more to have the 3-monthly contact. I suspect the cost to the taxpayer of that admission was way more than the SB I surrendered.

      Annecdotally WINZ has already been a contributing factor in suicides, in one case proven to be. I’m sure that if you surveyed hospital doctors (medical and psychiatric) they’d be many who would report their patients talking about WINZ stress pre-admission.

      • Annecdotally WINZ has already been a contributing factor in suicides, in one case proven to be.

        And because WINZ actions are a result of government policy the government that brought in the policies that caused such stress should be held accountable – and booked for murder.

        • tracey 11.1.1.1

          personal and professional accountability, which the Right rails for from the poor and vulnerable

  12. Heather Maich 12

    I’m really hoping the Labour government will improve the relationship between WINZ / ACC relationships. These big state organisations have become such bullies and have such a punitive attitude and unfortunately have huge power. Hang in there.

  13. keith ross 13

    Adam you are so right in what you say about the stress,I feel that people generally have no idea how much the stress affects an already comprised body. The thiongs that can cause it may also seem small to outsiders of the systems we have but when you are trapped in a closed loop of no more substantial work in the future and kids to look after. I am tossing up weather or not to give my young’in his melatonin every other night as the cost is to much for me, I never thought that would happen in NZ let alone to me.(it is not funded)

  14. tracey 14

    I will be interested to read comments from our ACT, Nat and Labour voters on this post. One reason I voted Green is their comprehensive (spelled out) policy for welfare reform. Kay, I am thinking an immediate rise of 200 bucks a week would have helped?

    • Antoine 14.1

      Hey Tracey

      Having been a Nat voter for some years in the past and spent a certain amount of time on Kiwiblog, I think I could take a good guess as to what the Nat and ACT voters would say. I am fairly sure that hearing it would not make you any happier or wiser.

      My own view: roll on WINZ reform. Even if entitlements did not change, it would improve almost all beneficiaries’ lives greatly.

      A.

      • tracey 14.1.1

        I wasn’t looking to feel happier by their input but to see how they rationalise it. Getting it from their heads to the page is one step 😉

        • Antoine 14.1.1.1

          > I wasn’t looking to feel happier by their input but to see how they rationalise it.

          I could tell you, but then I’d look like a douchebag. And Kay already knows from reading e.g. Stuff comments.

          A.

          • tracey 14.1.1.1.1

            I am hoping that they will have the courage to be honest about it in front of someone (and others who commented) who are suffering rather than being keyboard warriors seeing politics as a game for winning regardless of who suffers. 3stepstotheright has passed comment, upon being pushed by me to come here in another thread, but hasn’t posted here.

            Cowards who like to pass judgment on others but shy away from the realities of their positions.

            • Antoine 14.1.1.1.1.1

              Well to be fair, I think most National/ACT voters aren’t here reading a left wing blog. Ask Kay to repost as a guest post on Kiwiblog and I’m sure you’ll get plenty of right wing comment.

              A.

      • Kay 14.1.2

        Antoine, we’re under no illusions what NACTs think about us. But I’m curious to know- if you think WINZ needs reforming and beneficiaries lives need improving, then why should entitlements stay as they are? Because our live CANNOT improve without more money. Simple as.

        And if you really do give a damn about the well being of beneficiaries, why are you continuing to support a party who’s goal in life is to make our lives a misery?

        • Antoine 14.1.2.1

          > But I’m curious to know- if you think WINZ needs reforming and beneficiaries lives need improving, then why should entitlements stay as they are?

          I don’t know about _should_ but I suspect they _will_ for this parliamentary term at least.

          > Because our live CANNOT improve without more money. Simple as.

          But they can improve by WINZ treating you more humanely. Not only because it will be more pleasant to deal with WINZ, both in person and remotely, but also because some people who don’t currently get their full entitlements, will get what they ought. And some people who give up on the whole WINZ business because it is too nasty (like adam above) will hopefully return and collect what they should get.

          > And if you really do give a damn about the well being of beneficiaries, why are you continuing to support a party who’s goal in life is to make our lives a misery?

          I voted Green this year.

          A.

    • Kay 14.2

      Tracey, $200 would be luxury to any extreme budgeter! The difference that would make to our lives…wow. But sadly just a dream. I’m under no illusions that’s going to be happening for a long time. I’m a Greenie too, for obvious reasons 🙂

      Hell, they could always start small with $50- even that would make a massive difference, but even that would be enough to rile up the media and rednecks out there (oh the extravagance!)

      • tracey 14.2.1

        That is why I am interested to see their comments here. They usually have no problem putting forward a view. We shall see.

      • One Anonymous Bloke 14.2.2

        They’re riled up now, and have been for decades. There’s no middle ground – the government should simply be very direct and call out hate speech for what it is. Meet the bigots and sadists head on with facts and evidence, call out their behaviour and demand that they explain themselves.

        It’ll never be the right time if the bigots and sadists set the agenda.

        • weka 14.2.2.1

          Sadly there’s lefties still arguing that Labour can’t afford politically to deal with bludger memes and raising benefits.

          • tracey 14.2.2.1.1

            Agree

          • One Anonymous Bloke 14.2.2.1.2

            A compromise solution: enact Seattle-scale minimum wage rises and tie benefit rates to the MW.

            The bigots and sadists will howl their envy-based politics – forced to attack wage-earners as well as other citizens, and be proved wrong within twelve months.

      • weka 14.2.3

        Yes, $53/wk is the 20% increase for all benefits that was in the GP policy.

        • tracey 14.2.3.1

          https://www.greens.org.nz/sites/default/files/income_support_20170521_0.pdf

          https://www.greens.org.nz/page/income-support-policy

          Because YES some of you out there it is about money, and money can solve some problems. Cos folks like Kay, cannot be cured, cannot get into decent work. So the answer tot heir appalling circumstances is money. The money Google do not pay in taxes, the money that went to Warner Bros, the money people like Bill English use lawyers and accountants to take from taxpayers, cos they can find a way to make what is blindingly wrong, legally “right”.

          and do not forget this

          “Tax reform will ensure everyone who earns less than $150,000 a year is better off, by reducing the bottom tax rate to 9 percent and putting in place a new top tax rate of 40 percent on income over $150,000.”

          That is right, for each dollar you earn after 150k, you pay 40c back into the society that raised you, supported you, educated you. Remind me why that is a problem?

          • The Chairman 14.2.3.1.1

            “Because YES some of you out there it is about money, and money can solve some problems. Cos folks like Kay, cannot be cured, cannot get into decent work. So the answer tot heir appalling circumstances is money.”

            And that is the message we need to get through to Labour.

            • tracey 14.2.3.1.1.1

              And to National.

              • One Anonymous Bloke

                That is a waste of investment. National’s owners want all social services to be privatised. They’ll pay lip service to anything to achieve that goal.

                “Swallowing dead rats”, eh.

                • tracey

                  😉

                  It is very clear that many Nact voters and some Labour only give a shit about this stuff when it happens to tgem or a loved one. Nikki Kaye’s response to her health crisis being a case in point. Did we give her 5 sick days like most people get or did she get leave on full pay? She offered to resign but Key, on our behalf refused. That is a good thing but rare

                  ” I find I connect with people more than ever before as a result of it.”

                  And yet a couple of years earlier voted for the Public Health and Disability Act Amendment 2013 which disenfranchised care givers who look after disabled family members 24/7

          • cleangreen 14.2.3.1.2

            Good one there tracey,

            we have long witnessed the uncaring of those who have made themselves rich from National Party plundering our SOE’s we owned but got nothing as they sold them.

            So the rich now must pay back those ill-gotten gains in part at least, but they wont.

            So regulatory tax change is the way to go now.

            • tracey 14.2.3.1.2.1

              I know some wealthy folks work hard but some poor folks work 2 or 3 jobs so this is not about work ethic.

              If I earned 150k I would happily pay 40 cents for every dollar over that. I think the slightly deceptive thing by the Right is they dont make it clear it doesnt kick in until you reach that figure and let people think it is 40% on the whole 150k

    • Craig H 14.3

      As a Labour voter, I’m all for a better system that pays more. We have record labour force participation, so all the beneficiary bashing is totally unfounded.

      • Tracey 14.3.1

        That is great Craig. It makes me wonder, whose loss of vote bothers Labour then? Those who dont vote for them? It is interesting tgat when we get a new Nat govt they move quickly against workers rights in favour of business but when Labour is in their first moves are often to ease the worries of businesses.

        • Craig H 14.3.1.1

          There are a lot of childless workers who resent how little they get paid, and get annoyed by long term beneficiaries. Labour is their natural home, so it’s a real balancing act to keep them happy while still being compassionate and helpful to beneficiaries.

          These workers get annoyed by working for families, DPB/SLP, and long term beneficiaries because these are all income streams that are unavailable to them, and, as they see them, optional, so are effectively the product of poor choices (in their worldview, not mine). Invalids and superannuation are usually exempt from this.

          This is a mindset that gets upset by the increase in minimum wage because they don’t personally benefit from it, or because their good job is about to become a minimum wage job, so it damages their perception of themselves.

          Turning this around is tough…

  15. The Chairman 15

    Thanks for sharing your story, Kay.

  16. Kay 16

    I have to go out for a few hours now so won’t be able to respond to any more replies till this evening sorry. Thanks for your replies and comments so far, and thank you Weka for your help in getting my first ever post up!

  17. Treetop 17

    Kay, I identify strongly with your post.

    The term I have come up with for people in the situation you speak of is medical retirement. This does not mean that a person has to give up on finding a way to increase their income (part time) or to have meaningful structure in their life.

    At what age should a person be entitled to medical retirement?

    A person age 60 goes to their GP for a medical for SLP and the GP states that the condition is to last 5 years and issues a medical for 5 years.

    It is about keeping welfare payment cost down to a minimum and not recognising medical retirement.

    Is there a difference between medical retirement and disability?

    It is about time that Work and Income STOP pressurising people on supported living payment, all this does is place more stress on those who never get a day off from the impact their health has on their life.

    I thought that Richardson did not cut the main benefit for the then invalid benefit in the early 90’s.

    • weka 17.1

      Medical retirement, that’s a great concept. It’s also trusting that people will want to take part in society where they can and doors should be left open to that. At the moment it’s all barriers.

    • beatie 17.2

      Yes! I am 63 and have had rheumatoid arthritis for 30 years. I am on the supported Living benefit. Four years ago , my rheumatologist signed my medical certificate (required for Winz) and said I would never need another. However last year Winz demanded another one and I will also have to provide one next year. Why? My arthritis is incurable and has slowly become worse.

      It is difficult enough to live with a debilitating illness, with it’s attendant poverty, loss of hopes and dreams etc. Once I had dreams of doing another OE at this stage of my life, but instead have the slow erosion of my dignity, feelings of self-worth and inclusion, isolation etc. Then there’s the judgemental attitudes of those who don’t have a clue, un- solicited medical advice from all and sundry, including a Winz case manager.

      I don’t expect much from Labour. They have been part of the problem for years and have yet to acknowledge this, let alone rectify the situation. So when Jacinda talks about ”all NZer’s”, there’s still the unspoken, ”except beneficiaries”.

  18. savenz 18

    Great post and essential reading.

    It does not sound like an easy life and outside of your control. I also agree tolerance is lower and cost of living continues to rise.

    I also think in NZ going towards a low wage economy combined with deregulation, sickness will be on the rise so there are going to be more people in your position on a sickness benefit.

    The only thing I can see you could do that might make things better is getting involved in community groups who could support you (and you others). Or expand on writing in blogs. Getting heard.

    Good luck, Kay!

  19. savenz 19

    Also worth remembering that medical charges are going to rise under TPPA. It’s a crazy world where major industries have unregulated profit from misery and misfortune and governments let them.

  20. sanjaywa 20

    Thanks for this article Kay. My brother has cerebral palsy and is physically disabled. Despite being a bright cookie, most employers take one look and decide it would be too tricky to take him on.

    As a disabled person, living on his meagre benefit, he still has to pay for a yearly visit to the doctor to prove that he is fact, still disabled and worthy of getting the benefit. He has to pay for things like the stoppers on his crutches, replacing tires and batteries on his mobility scooter and many more costs that simply come with the disability he has. It’s so wrong!

    The disabled and chronically ill absolutely need to be in a separate stream to other beneficiaries. And ALL need to be treated with dignity and compassion, not greeted with security guards and treated like scum.

    • tracey 20.1

      I hear you. It is not as if discovering a cure for CP would not make the news. This is a system designed to make people give up trying. Then a govt can announced most smugly that it has reduced the numbers on benefits.

    • One Anonymous Bloke 20.2

      Better to treat everyone the same: as individuals with individual circumstances and needs. Charge public servants with the duty of ensuring that individuals have what they need to live and fully participate in society to the extent that they are able.

      • weka 20.2.1

        The one I’m thinking about today is the manager of every WINZ office in NZ that makes people stand in line and provides no alternative. There’s around 100,000 NZers on medical benefits in NZ. Not all of those will be incapable of standing in a long line, but many will. Then there are the people on other benefits who are sick that day, or exhausted. Any manager who is running an office that doesn’t provide easily accessible options for people that can’t stand in line is practicing discrimination on the basis of disability because they’re limiting access to entitlements. They wouldn’t get away with not having a wheelchair accessible space so why are they allowed to put barriers in the way of other kinds of disabilities? Those people need to be held to account.

        • One Anonymous Bloke 20.2.1.1

          I’d dispense with the torture sessions altogether. For those without access to internet and phone there may be a need for public servants to see them in person.

          In that case, absolutely, hold the managers responsible for providing access, ensuring that staff keep appointments in a timely manner, are honest and reliable and trained to be useful.

          I can think of few reasons why someone with a permanent disability would ever need to deal with them. Actually, I’m struggling to think of any.

          • McFlock 20.2.1.1.1

            Changing circumstances, or changing levels of disability.

            Phone and internet are good for some people and purposes, but suck for others – and of course the nat move would be to close the local offices, then de-staff the contact centres so that you’re always on hold or waiting for an email.

            • weka 20.2.1.1.1.1

              +1

              Sometimes the call centre waits are huge, and the call centre doesn’t have the ability to process benefits. It would be good to go back to having local phone numbers that are staffed by local offices.

              Lots of people need an actual case manager (WINZ have rarely had case management despite using the name). But only if the MSD is going to utterly change the directive to front line offices that they are meant to give money to people not prevent people from getting it.

            • tracey 20.2.1.1.1.2

              And for some folk on disabilities they actually have few human contacts due to their circumstances. Having a compassion winz person they see each time might actually create a relationship.

              • weka

                Also issues with understanding entitlements, form filling etc, some of that can be better in person. What WINZ should be doing is giving people a choice. I’ve known ill people who have to do special trips to town because WINZ have lost their paper work.

                • tracey

                  I hear this commonly. Also if you move towns you often have to repeat everything, including identification docs etc even though it is all on the system.

            • One Anonymous Bloke 20.2.1.1.1.3

              I suppose what I’m getting at is that the public servants need to be instructed and enabled to support citizens in whatever manner is appropriate.

              WINZ staff are ill-equipped to assess changing levels of disability. That job is better suited to GPs and other health professionals (and not WINZ designated doctors enablers).

              • McFlock

                But they aren’t necessarily better suited to adjusting the income of beneficiaries or accessing an additional allowance if needed.

                Under the last govt, the WINZ job was to find an excuse to lower someone’s entitlement and get them off your books. That needs to change into getting people what they need.

                I’d also expect a transition into actual case work – chasing down things like taxis chits that might be available from other organisations, or disability parking permits. Or getting onto a contact at the local DHB who does occupational therapy and can arrange ramps for the front door step, and maybe the gp overlooked the referral. At the very least, telling people about these services.

                • One Anonymous Bloke

                  Also, they need a well resourced investigative team to identify and document the human rights abuses that the department perpetrated over the last few decades, so that affected citizens can be appropriately compensated.

                • weka

                  We used to have a Department of Social Welfare.

                  • One Anonymous Bloke

                    If you really want to change the culture call it The Department of Human Rights.

                    Give it responsibility for all workplace and social welfare legislation, prosecuting slavers, traffickers and Mr. Peter Talley.

                  • Kay

                    Ohh Weka….you’re making me all nostalgic now 🙁
                    My bank statement still uses the SW code for my payments, so maybe banks still think it’s social welfare?

                • tracey

                  Like ACC the default position became obstruction. Make it hard to operate under the system. In ACCs case in any doubt refuse and wait for the claimant to find an advocate to challenge. Most cannot afford to challenge so hey presto successful claims drop… we saw this reflected in the high rate of appeals overturned.

        • Kay 20.2.1.2

          Weka, I never did follow through but I went along to a Community Law talk about WINZ Worries (out of curiosity) which was a general know your rights thing. I asked at the time about the legality of their refusal to let any clients- including disabled people- access to their toilets, and did that fall under the disability discrimination act, especially as they’re a Govt agency.
          Said Community lawyer couldn’t tell me off the top of her head but certainly felt strongly it was and suggested I initially contact the Human Rights Commissioner.

          One of the many things on my to do list, but I should really add that being forced to stand in a queue thing to it. Though of course they will always find a way to deny they’re “forcing” us.

          • weka 20.2.1.2.1

            The way I understand it is that if there are barriers to prevent you from accessing something that you could access if you weren’t disabled, then it’s discriminatory. So if each time someone has to supply paper work to WINZ they have to stand in a queue and their disability prevents them from doing that, then that’s access denied that wouldn’t be if they were physically able.

            WINZ will probably argue that there are seats etc, but the onus is on them to make access visible and known. What I would expect is a process whereby WINZ offers another way to do paper work to people who need it. e.g. they can scan and email their paperwork. Or if they have an appointment, they can text the office when they arrive and someone comes and finds them in the waiting room when they are ready. These are not difficult things to organise from a managerial point of view.

            I’m guessing that WINZ offices are understaffed and that is another reason why there are queues. But imagine if you had to queue up when you arrived at your GP for an appt. It’s ridiculous.

            The toilet one is a bit different, because they can argue that everyone is being denied access. But it could then be argued that a differently abled person could walk to the nearest public toilet whereas someone who is unwell can’t. etc.

            • Craig H 20.2.1.2.1.1

              WINZ are definitely understaffed because the previous government didn’t accept forecasts of higher unemployment or benefit numbers.

    • Treetop 20.3

      CP is not a choice. Managing CP should be a choice. Dignity and compassion is not easily found at Work and Income for those who are disabled and chronically unwell.

  21. tracey 21

    No 3stepstotheright, Puckish Rogue, BM, James… funny how when it isnt about petty point scoring and “my team is better than yours” but real people with real struggles a piece of their anatomy just shrivels right up

  22. Ad 22

    In a years’ time, this writers’ experience will be a good benchmark for Minister Sepuloni.

  23. Korero Pono 23

    I work with homeless people and the common theme in my work is that ALL that have come through my doors were not receiving their full benefit entitlements and ALL have missed out on significant Disability Allowances – even though their case managers knew they had long-term illness. Most of those people have ended up homeless as a result of adequate resources. The long term impact of not receiving entitlements are, increased debt (and poor credit history) – probably could have been avoided had their full entitlements been paid. This directly impacts on their ability to find housing because they’re considered liabilities. Their health has also deteriorated – stress, poor diet and lack of medical care does that to people I would hazard a guess that if they’d had their full benefit entitlements, they’d probably not be homeless now.

    How long will it take for Government to understand the relationship between poverty and health?

    • weka 23.1

      Yes, and the people whose health would have improved if they’d been given support instead of being harassed, denigrated and denied access to income.

      The correlations between poverty, stress and health are so well known now it’s hard not to see governments as just not caring, or in the case of National, wanting a bigger underclass. (also possible is that National really are just incompetent).

    • Kay 23.2

      “How long will it take for Government to understand the relationship between poverty and health?”

      They know. Everyone knows. It’s this thing call basic empathy and general giving a damn about anyone but ourselves that’s gone missing somewhere along the way.

      And from a political perspective throw in money as well. So the angle of attack there has to be getting through their thick skulls the basics of cost benefit analysis. Hell, I never even did 3rd Form economics, I don’t profess to have a clue about how it works, I’m not even interested in the subject. But common sense dictates that it’s much cheaper for the State to adequately house and feed it’s populous than it is to foot the bill for frequent/prolonged hospital stays.

      Now taking that basic proposal directly to politicians won’t make the slightest bit of difference. But perhaps Joe Public- with a bit of encouragement- might start to get the message that his hard earned taxes are being unnecessarily wasted by said State, and in addition scare hospital resources are also being tied up that might be delaying treatment for him and his family.

      Politicians don’t give a damn about what we have to say, but taxpayers saying it is something else. Worth a try?

    • Patricia 23.3

      Totally agree with you – Koreo Pono. I too work with long term homeless people and those with mental health issues. Some MSD Case Workers do their best but tell me their hands are tied. Checking entitlements is a must and then going to WINZ with the client to ensure they are heard. Single people have been disadvantaged for years and seemingly have no voice.

    • Descendant Of Sssmith 23.4

      The government does know the relationship between income and health – just as they do between income and education.

      hawkesbay.health.nz/assets/News-and-Event-files/Health-Equity-Report-2014.pdf

      As noted many times benefit rates used to be the same as NZS and Labour has had no plans to increase benefit rates.

      Labour sucks.

  24. Julian 24

    This story resonates a lot. I have Cerebral Palsy and for most of my adult life I’ve been on a benefit. Most of my work was part time and although it helped I still had to be careful with spending. Attitudes in the last decade towards the disabled have really gone backwards to the point I have hatred towards WINZ as a result. I really hope the system changes.

  25. UncookedSelachimorpha 25

    Awesome story and comments. Well done and kia kaha.

  26. Incognito 26

    Awesome post!

    I guess it would be asking too much for mobile case managers to deal with low- or no-mobility clients and do home visits. I know it’s not equivalent but midwives and Plunket nurses do home visits for similar reasons: to support & assist and to educate and make sure things are alright and people’s health and wellbeing is secure. Obviously, this falls under MoH but if it can be done there …

  27. r0b 27

    Thank you for writing this Kay, and good luck to you.

  28. Karen 28

    Not only are benefits set at far too low a rate, many people are not even being paid their full entitlement.

    Auckland Action Against Poverty (AAAP) have put together this useful booklet that is essential reading for anyone trying to survive on a benefit and cope with the culture at WINZ.

    http://www.aaap.org.nz/resources

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