The Unfathomable World of WINZ

I want to make it abundantly clear that I have no wish to criticise the case workers and telephone support staff that I have dealt with personally over the past two months.  Without exception I have found them to be friendly, helpful and empathetic.  The problem is that they are dealing with vulnerable and sometimes desperate people with a wide range of needs that don’t always fit the flawed ‘one size fits all’ structure of the institution they work within.  I am of course, talking about WINZ (Work and Income New Zealand).

Prior to being hospitalised and later diagnosed with multiple sclerosis in September this year, I’d had little to do with WINZ.  I was briefly on a Jobseeker benefit after being made redundant toward the end of last year but aside from the ignominy of going cap in hand to WINZ feeling like a dole bludger, it turned out to be a relatively straight-forward experience and in the new year I’d found temporary full-time employment and moved on.

Unfortunately with WINZ, as soon as a disability is factored into the equation a whole raft of exhausting paperwork materialises that is made exasperatingly worse because you have … a disability. My hospital social worker was an enormous help in completing the voluminous paperwork required to access my ‘entitlements’.  I would’ve lost the will to live if I’d had to navigate through all that alone.  After four weeks of being hospitalised I returned home in a wheelchair, hopeful I would come to terms with this life-changing diagnosis and be able to concentrate on recovering to a point where I could eventually do a few hours work from home so I wouldn’t be fully reliant on a disability benefit.

The day after I was discharged from hospital I received my first Jobseeker Support payment from WINZ along with a letter saying they had determined I had two weeks before I needed to attend courses, work assessments and make myself available for work.  No mention of my disability or advice on how to get to any of these interviews or courses was forthcoming.  I was totally housebound.  I was no longer able to drive my car and I live nearly an hour out of town without access to public transport with disabled facilities.  Furthermore, I didn’t feel confident that two weeks would be sufficient time to rid myself of the overwhelming exhaustion that is part and parcel of MS and become a “Jobseeker” when the simple act of taking a shower took half the morning to accomplish.

The next correspondence I had from WINZ was a photocopy of one page of my Disability Certificate.  The YES/NO box that said “Does this person have a disability that meets the Disability Allowance criteria” hadn’t been ticked even though the rest of the form gave full details and a Work & Income Work Capacity Certificate had been submitted a month earlier ticked, signed and completed by the hospital saying “poor mobility, bowel & bladder control, fatigue and pain associated with multiple sclerosis”.  Unable to comply with their request to return the form in person with the now ticked box, I phoned to get a postal or email address.  This wasn’t possible.  I had to fax it.  I managed to find someone still using 1990’s technology and faxed if off hoping it hadn’t been reproduced on thermal paper and wasn’t quietly deteriorating to a yellowed state in the corner of some WINZ outpost.  I phoned to make sure they’d received it but was told it would take a few days to process.

The following day I received another letter from WINZ … “We understand you were admitted to hospital.  Please phone us immediately.  Unless you have ongoing costs that you can’t meet, your income support will reduce to $43.45 per week from 30 December.”  Aside from homeless individuals who might find themselves unfortunate enough to end up in hospital, who would fall into this category?  Most people I met in hospital had homes they were either paying rent or a mortgage for, the cost of which would be ongoing regardless of whether they’d been admitted to hospital.  Quite apart from the fact that WINZ must have known I wasn’t still in hospital as I’d spoken to them on the phone, why send out a letter that must apply to only a very small percentage of the population?  I phoned WINZ again and was told to ignore this letter.  I was starting to dread these communiqués from WINZ as it was adding to my stress and there was still no mention of my disability.

On the bright side, I was starting to feel a bit more confident and was learning to cope with my new disability.  I still had mobility and fatigue issues but had started to do a few hours work for my previous employer who have been amazingly supportive throughout my ordeal.  I declared this income to WINZ which was pretty meagre as I couldn’t do much in the way of hours but at least it was a step in the right direction.  I received an online letter from WINZ within hours.  My Jobseeker support had been suspended and I owed WINZ money.  I’d anticipated this and repaid a portion of what they thought I owed but I was still waiting for a resolution on the disability allowances I was due yet had heard nothing whatsoever about.

I contacted the hospital social worker and she was able to put someone from WINZ in touch with me from Auckland – due to the Kaikoura earthquake she wasn’t based in Christchurch, as they were terribly behind with their paperwork which was why my faxed form with the ticked disability box on it hadn’t been processed.  Furthermore it now couldn’t be processed because my benefit had been suspended due to my previous earnings declarations being slightly over the Jobseeker allowance!

In an effort to put my current position into perspective I read Angela’s Ashes from cover to cover and listened to the recently departed Leonard Cohen.

It’s strange how the Kaikoura earthquake can cause a three week delay processing my disability certificate, yet an online declaration of earnings can trigger an overnight letter in a heartbeat.  My Jobseeker Support had been restarted but Temporary Additional Support had stopped and deductions had been made to repay my debt.  No mention of disability, just a reminder that I owed the full amount without the repayment I’d made a week earlier deducted.  The letter ended with a spiel about attending interviews and courses and that l must accept any suitable job offer of work for at least 30 hours a week and provide evidence to WINZ of what I’m doing towards this.  There were even helpful suggestions about contacting employers in my area and visiting employment agencies.

By this stage I wasn’t only feeling depressed, I was angry.  I’m sure I’m not the first person who has just had their life turned upside down with a distressing diagnosis only to find they have to put up with this sort of stressful and inappropriate correspondence.  I phoned WINZ and was told to ignore the letter as it was computer generated and my disability allowances would be investigated and actioned.  I’m happy to say that this finally came to pass but not without a considerable amount of angst.  I feel desperately sorry for anyone in this position who may have a more upsetting and debilitating condition than I do and who might be less capable than me of dealing with this sort of inane crap.

I also feel sorry for the staff at WINZ because their dysfunctional system pushes people to levels of frustration that put them in the firing line for all kinds of abuse that isn’t necessarily their fault.  Why is there not such a thing as a Sickness Benefit?  And why do I have to keep sending off Medical Certificates every three months when I have an incurable disease – do WINZ know something about a forthcoming cure for MS that no-one else does?  Why must they treat people with genuine disabilities as full time ‘Jobseekers’ when they are physically and mentally incapable of pursuing that course of action.  Not only is it intimidating, it’s inhumane.

Furthermore, it would go a long way to preserving the mental wellbeing of this vulnerable group if we weren’t being constantly overwhelmed with a tsunami of irrelevant system-generated correspondence.  Perhaps WINZ should publish the Beginners Guide to Identifying Correspondence One Can Safely Ignore as it’s impossible to know when when to take it seriously and head for higher ground.

People with disabilities haven’t deliberately made some sort of lifestyle choice.  Most have paid their taxes and like me, have struck a hurdle and only want to pay their rent and put food on the table.  Let’s face it, no-one in their right mind would willingly choose to get caught up in the peculiarities of this unfathomable system.

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MS: My Invisible Journey

My ‘invisible’ journey began four years ago.  It was the beginning of a baffling, frustrating and extremely expensive period of my life that became increasingly dominated by a mysterious health issue.   I had previously been extremely fortunate with my health and had hardly even suffered so much as a cold.  That is until I turned 53 and hit menopause which is when the problems began.  Severe and regular hot flushes and overwhelming tiredness were bad enough but I had also developed a peculiar problem which seemed to emanate from a trapped nerve in my left buttock causing weakness in my right leg.  It got to a stage where walking was becoming an increasing effort and other muscles that were compensating for the weakness became over-strained and sore.  Although I was still functioning reasonably normally and holding down a responsible full-time job, most of the time I felt exhausted, disorientated and totally out of alignment, both physically and mentally.

I was living in Australia at the time and, determined to get to the bottom of the problem, I visited a host of medical professionals most of whom were every bit as mystified as I was.  Some I’m sure thought I was just experiencing some imaginary menopausal fantasy and that I was making the whole thing up, although why I’d want to do this I have no idea.  I had an MRI scan, a cortisone injection, two x-rays, a nerve conduction study, and an ultra-sound.  Apart from ‘normal degeneration for my age’ everything appeared to be in good working order … except my bank account.

By mid-2013 I decided to leave Australia and return to New Zealand while I was still physically able to go through the drama of packing everything up and shipping it back to New Zealand … and while I could still afford it as I was fast becoming in danger of spending everything I owned on medical bills and ineffectual remedies.  Once back in New Zealand, I had another MRI scan of my lower spine which revealed nothing more startling than the one I’d had in Australia so I became stuck yet again in a fruitless round of physiotherapy sessions, chiropractic manipulations and the like.  Friends and family understood that I had some sort of undiagnosed back problem, but for most people meeting me for the first time the only clue that there might be something wrong was a slight limp and the fact that I very occasionally used a stick if I had to do a lot of walking.

Inside though, I felt ghastly.  The leg weakness was still bothersome and although I wasn’t in a huge amount of pain, I’d get a lot of cramps and pins and needles.  Plus I would often become overwhelmed by an uncontrollable urge to fall asleep at the most inconvenient times but I just assumed that this was simply part of the whole nightmare associated with the dreaded menopause.

Life ticked on pretty much as usual until mid-2015 when my doctor gave me a referral to a neuro-surgeon who ordered yet another MRI which revealed that I had a condition known as spondylolisthesis.  At last I had a diagnosis and the good news for me was that it could be remedied with surgery!  I couldn’t get it done fast enough.  Filled with hope that I was finally going to get some relief from my symptoms I underwent four hours of surgery which incorporated a spinal fusion, laminectomy and a decompression.  I waited in hopeful expectation for nearly a year afterwards but eventually had to conclude that the surgery had done absolutely nothing.   My symptoms were neither relieved nor worsened by the surgery and whilst I don’t doubt the existence of the condition that was diagnosed, I was firmly back at square one.

By this time I was starting to suspect that the problem might be psychosomatic.  I’m (thankfully) not prone to depression but thought that perhaps menopause might have caused some sort of mental imbalance that could have thrown up some past issues from my subconscious that might be contributing to my symptoms.  Figuring it couldn’t do any harm to at least investigate the possibility, off I went to counselling.  I was into my second session when something happened that triggered a chain of events that solved the mystery once and for all.

I decided to get a kitten.  My old cat had passed away and someone I knew was giving away this cute little ball of orange fluff and I couldn’t resist.  He was so affectionate that he followed me everywhere and one morning when I was getting ready for work he managed to trip me up (which wasn’t difficult as I was going through a particularly bad patch with my weak leg).  I didn’t actually fall over but landed very heavily on my left foot.  It was as though a bolt of electricity had shot through my foot up to my waist and it hurt like hell!  On the advice of my local doctor I ended up at the 24 hour surgery for an x-ray of my foot and to get some crutches as I was finding walking exceptionally difficult.  If I put too much weight on the foot I would get the electric shock sensation.

The young doctor who examined me after the x-ray was less than helpful as the results showed there were no broken bones and he didn’t seem to think that the electric shock sensation was anything to worry about.  We talked about pain relief and I explained about the spinal operation and said that I’d received some Tramadol after the surgery along with a virtual lifetime supply of Panadol.  He brushed the Tramadol off as being a total overkill and said I should do something about my peculiar gait (no shit Sherlock).  Why not get some physio?  (What a novel idea- why didn’t I think of that?)  He then attempted to trip me up (figuratively speaking) about which leg was weak and which foot was hurting as though I had somehow got my story wrong.  Clearly he thought I had absolutely nothing better to do with my day than to visit the after-hours surgery and waste everyone’s time, including my own.  If I had been feeling better I might have been in a position to stand up for myself but by the time I got to reception to pay the bill I was in so much distress I was uncharacteristically in tears.  I could scarcely walk, had no crutches and wasn’t signed off for ACC.  Thankfully the receptionist/nurse at the counter saw my distress and organised some crutches whilst the young doctor I’d seen rushed out and gave me a prescription for Panadol.  This to my mind was clear evidence that he hadn’t listened to a word I’d said.

After that nasty little episode things got progressively worse and I ended up having nearly two weeks off work which seemed odd given that the cat tripping thing was a relatively small incident.  I went to my local doctor and was prescribed anti-inflammatories.  Unfortunately these gave me horrendous stomach cramps and then I started to go numb around my midriff which affected my ability to empty my bladder and bowel.  Although I thankfully hadn’t become incontinent, I literally had no sensation of when I needed to use the toilet.  On the day my legs gave way completely, my daughter was at home with me and she called an ambulance.  I was taken to public hospital and given an MRI, not just of my lower lumber spine this time, but of my entire spine and brain.

The following day I was told that I have Multiple Sclerosis.  I was neither surprised nor distressed by this news.   I was relieved.  It explained so much of what I had been through for the previous four years and there was relief in the knowledge that I was finally taling to people who actually understood what I was experiencing.  It wasn’t in my mind.  I didn’t need to ‘just get a bit of physio’ or ‘take a couple of Panadol’.

I was discharged from Christchurch Public Hospital and transferred to the Burwood Brain Injury Rehabilitation Service at the beginning of last month.  The doctors, nurses, occupational therapists and physiotherapy team there are absolutely amazing, as are the newly built facilities.  I feel very fortunate to live in a country where services like this one are available when you really need it.  I was discharged three weeks ago and am home now.  Although I’m not independently mobile and am still getting used to being surrounded by mobility aids, some of the symptoms are easing a little and I’m feeling a lot more confident.  I’m extremely fortunate to be surrounded by a caring community and to now have an understanding employer enabling me to return to a work situation that accommodates my condition and for this I am so grateful.

The invisible nightmare is over and at least I can put a name to it now, if not for my own understanding but for others.  I’m at the beginning of a new journey now and I have no idea what is in store but I know this much, it’s going to be very different.

 

The Move to Newcastle …

I have never been one of those moaning Minnie’s who bang on about greener pastures in Australia at the first hint of a problem, but towards the end of 2010 I’d had enough.  I’d had enough of looking for work in New Zealand after being made redundant, enough of jumping through hoops at recruitment agencies, enough of the low wage economy, enough of the soaring prices, and I’d had enough of being woken up in the middle of the night to yet another seismic reminder that Mother Nature was clearly as troubled as I was.  As much as I loved New Zealand and particularly the community and space where I lived, I couldn’t eat it.  What I was eating was into my precious capital which was rapidly diminishing whilst I lurked without impact on the periphery of recruitment success.

I found the earthquakes a lot less alarming than the bizarre nightmare occurring in the Christchurch Recruitment scene at the time.   One job I applied for (an Office Administration position) required applicants to do six quite complex and time-consuming ‘tasks’. A little after the style of Harry Potter and the Goblet of Fire but without the dragons. I set about my tasks with grim determination and spent a whole day researching my material and presenting it in a way which I was sure would impress. And it must have done because I managed to get selected for the coveted shortlist of three. Only by this time the job specs had changed somewhat and they now wanted someone who could not only assist with accounts preparation and maintain their website but could also fix a leak in the plumbing, unblock the odd drain and do hands-on property repairs and maintenance. I imagine finding someone with such an eclectic mix of skills on the pay they were offering would have been the hardest task of the lot!

After that experience, I decided to look at jobs in a greener and less shaky pasture – Australia.  I found one instantly that seemed to match my criteria perfectly.  I applied.  I heard back (this in itself was quite an amazing turn of events), but it gets better … I heard back within the hour.  Unheard of!  AND they agreed I had that Royal Flush of Recruitment– a matching Skill Set!  But wait, there’s more – they were actually prepared to pay me reasonable money to do the job.  I nearly fainted.  And all this using the identical CV I’d been using in New Zealand.

After being flown to Auckland for an interview and without having to do any absurd ‘tasks’ that involving unblocking drains or doing a spot of rat poisoning, I got the job.  The company paid for my relocation and initial accommodation and by the end of 2010 I was shipping steel out of Newcastle to New Zealand.  That I had gone to the only place in Australia to have ever suffered a fatal earthquake was an irony that was not lost on me and although I was deeply relieved that my daughter and I were spared the experience of the February 2011 quake, watching it from afar and worrying about the family and friends we had left behind was heart-wrenching.  Because my job required me to have quite a lot of contact with New Zealand, I heard about it from one of our Auckland based customers and immediately went to the Stuff website and saw an unthinkable image – “the cathedral has crumbled!  I need to go home now!”, I remember saying to my boss in Newcastle.  He must’ve thought I was deeply religious and needed to take time out for contemplative prayer.

Settling into the job in Australia was easy – the people were great, I loved the job and particularly having the contact with the New Zealand customers and service providers.  Not long after I arrived we had gardeners come to our work, to whipper-snip the garden area outside our office. Two men in smart suits standing at the printer took a whiff of the warm breeze coming through the open window and simply said: “Aahh.  Two stroke”.   I couldn’t be anywhere else but Australia.

But settling into Newcastle life wasn’t so easy.  At first blush you could be forgiven for thinking that Newcastle is just another industrial town – hastily built around the steelworks and showing signs of wear, particularly around the steelworks where I was working at the time.  But Newcastle is better than that.  It knows it’s a bit bogan but it is what it is and it makes no excuses for it.  And what it has is some of the best beaches in Australia and some wonderful quirky places to explore in the central city.  The Hunter Valley wine region is only about an hour’s drive away and the Honeysuckle waterfront area which was rebuilt after the earthquake in 1989 is a lovely place to spend a lazy Sunday sipping a cold drink and people watching.

However at the time we arrived, which was at the height of the mining boom, it was not a great place to be looking for accommodation with no rental history and a large dog.  I was blissfully unaware before left New Zealand that Newcastle was in the grip of a housing crisis with just a 1% vacancy rate for rental homes.  Just getting to inspect the inside of one was a major mission especially since we were unable to connect to the wireless internet at our temporary apartment on weekends.  During the week it was OK as long as we put the laptop in the middle of the bed, turned it at a 45 degree angle, held our tongue in the right position and prayed for favourable winds.  Given that cyberspace is where you had to register your interest in a property to receive a text message as to when it was open for inspection, having a reliable internet connection was an absolute must.  So we initially spent an unfortunate amount of glorious weekend time sitting amongst groups of kids playing games like Zombies in darkened internet cafes that advertised LAN parties and lockdowns whilst we earnestly surfed the Ray White Real Estate website for a 3 bedroom villa.

The inspections weren’t that dignified either and  nor was the intrusive application process.  We had to provide a raft of pretty personal and confidential information, including copies of bank statements, payslips, copies of our passports, birth certificates, drivers licences and two or three references.  I was giving serious thought to throwing in a copy of my dental records just for good measure.  The one thing we had to avoid at all costs was to make any reference to the possibility that we might own a dog.  This would be worse than saying we were looking for somewhere suitable to manufacture P.

Through a series of happy coincidences we finally found a place to rent through a private advertiser rather than one of the over-officious agencies.  Like a lot of places in Newcastle, it was a bit run down, was on a busy road and didn’t have a particularly nice garden but we tarted it up a bit and it eventually became home.