Kismet

It’s nice when things come together, even if it’s just in a small way. Life carries on while I’m working things out (I’ve had an email from MSD confirming they got my letter) and I’ve been spending this morning preparing for one of my final essays, for my medical anthropology paper. The topic is on medical ethics, and the first half of the question goes something like:

Joralemon believes the anthropologist has a special vantage point on bioethical issues that justifies the move from analysis to advocacy. An anthropologist may have an understanding of different cultural attitudes to the integrity of the body, ritual practices that attend birth and death, or the acceptability of the application of techniques that may cause harm or pain to the patient. However, it is important to remember that “moral decision making is contextual…” (Jessica Muller in Joralemon 2010 p.107).

Can there be an ethical code that includes the cultural values and norms that guide healing-related behaviour in any given society? Under what conditions should an anthropologist intervene in a medical context?

For a while I didn’t entirely know exactly what the question actually meant, let alone how to answer it, but when I turned my computer off to let it cool down and lay down with my Kobo and a pad of paper in case of ideas and just read for a while, it solidified. The book I was finishing is called Sniper by Jon Wells, and it’s about an anti-choice terrorist who shot several doctors in Canada and the USA, the last one of which died. The legal case hinged on whether he was intending to injure or to kill but in defence speeches there was a lot of moralising over whether force (deadly or not) was justified to prevent harm in the form of terminations. So I was reading the final few chapters of this book and coming across passages where it’s quite clear that no one can ever agree because the pro-choice and anti-choice positions start at inherently different philosophical positions. It also reminded me of an image someone posted on twitter that I’d glanced at about subsidies for the movie industry, where pro-subsidy people say “If we don’t give perpetually increasing subsidies the jobs will go elsewhere!” and anti-subsidy people say “We’ll have to give perpetually increasing subsidies or the jobs will go elsewhere!” It’s hard to find a universally acceptable answer there because both positions completely agree on the fact, but disagree on which value is the most important.

So, when I put down my Kobo and glanced at my pad of paper, everything just sort of crystallised. There cannot be a universal rule of ethics in medicine because different cultures view things so differently. Under one system you might view the individual patient as central and focus on their physical symptoms to find an evidence-based solution to prevent them from occuring, while under another you might have a holistic collective view where it’s just as or even more important to deal with the entire family, to tend to any tension or social discord that is causing or exacerbating symptoms. Or have different ideas on who should be responsible for decision making – like, what if what the patient wants goes against the interests of the family or contradict medical best practice? What’s the difference morally between a DNR order and euthanasia? What level of mental disability is enough to override the wishes of the patient and cause them to be considered incapable? How is the conception of a person linked to their physical body, and when does that start and end? How do you weigh post-mortem organ donation against beliefs surrounding the treatment of the deceased?

It will be interesting to write because the second half is to be about a current medical ethical debate in New Zealand. I’m doing the treatment (especially with regards to income support) of people with disabilities, particularly mental illness, which will touch on those things like who gets to make decisions and what best care entails. The guy who is like the head advisor to MSD about medical issues has this position where he believes that putting someone on a disability benefit and letting them not work is, like, literally as unhealthy for them as smoking some ridiculous number of cigarettes a day, and WINZ has switched to this position of focusing on what people CAN do rather than what they CAN’T, but they use unqualified people to make these decisions. So all that sort of thing is basically what I’m going to cover, the questions about what is the best outcome for the government or society or the patient and which outcome should be the highest priority and our cultural assumptions about self-reliance, the history of the welfare system, whose interests are supposed to be protected. It’s not as great a topic as I did for my last anthropology final essay, but now that I’ve figured out what I’m going to say it is definitely going to be something that I’ll enjoy writing, not some tedious shit like my first NZ Land Wars essay.

Don’t read between the lines

The Herald has an article up today about new contracts for welfare-to-work schemes which is actually something of an interesting read. Probably not in the way it was intended, though, because it’s clearly attempting to put a positive spin on the whole thing, but in a couple of places you can see the shine wearing a little thin:

“Strive Community Trust chief executive Sharon Wilson-Davis said she did not bid for the contracts and allowed an existing sole-parent contract to end late last year because she felt it would be impossible to achieve the work placements required to earn fees under the new pilots.

“‘A lot of these people certainly want to work but sometimes you are better off to get them into further training,’ she said.

“‘Otherwise if you push them into these low-paying jobs, then when those jobs go they are back in the same place.’”

So, someone who has already been doing this exact work feels that it’s impossible to actually make money off it if you’re acting in the best interests of the people involved. Which makes you wonder about the business plans of the people who did decide to bid for the contracts. The big winner was Australian but I don’t think that means they were ignorant about the condition of the economy – that would make them a pretty fucking incompetent company. And some of the contracts went to local groups who presumably do know the situation, too.

What’s interesting though is that this quote is followed directly by one of those anecdotes about a success story. It’s about a woman whose job history includes opening and running her own businesses in multiple service sectors and being very successful as a real estate agent until her marriage broke up. Then she was on the DPB and had nothing. But now, hurrah! She has a part time job running a check out at New World, and when she went from 16 to 22 hours she also got an extra $60/week tax credit!

Seriously. The success story they ran with was a woman who has run or co-run at least two businesses and been self-employed, who apparently was a millionaire (her home with her husband was worth $1.8m), and now works 22 hours a week as a check out operator. Not to dismiss service jobs, god knows I’ve relied on them before, but you can’t really deny that that’s a bit of a step down for someone with that kind of job history – and notably, that makes one less service job available for people who don’t have impressive qualifications and experience that would open up better opportunities.

The modus operandi of WINZ (TW)

When I moved to Wellington seven months ago I felt pretty hopeful.

I haven’t worked for much of the last ten years. For most of it, I’ve been on the sickness benefit, going back to my doctor every three months for another certificate saying I was still ill. I hated that benefit. It gave me a couple hundred dollars a week, which was okay because for the last nine of those ten years I was living with family with a reduced board and food in the cupboards, but I wasn’t able to save much and in the back of my mind I knew that moving out would be… problematic, to say the least. But being on a benefit, particularly a sickness benefit when you have an invisible, mental, disability, is soul-destroying. You don’t notice how much ableism is in the media until you look at it from that position in life. I wanted badly to be doing something useful. In school I’d wanted to be a teacher, most likely a high school humanities teacher, and when I was in seventh form I became a peer leader for incoming third formers who only encouraged that desire. “You’d be an awesome teacher,” one of them told me. (This may or may not have been linked to the rain day when I taught them to play poker with plastic counters.) Others confided in me about their problems or asked me for help with homework. Most peer leaders started dropping out after the compulsory program at the start of the year finished; I kept up the relationship that whole year. When the 2002 students strikes hit I ended up teaching a third form Spanish class so the actual teacher could help other staff round up stray kids. The year before when NCEA was introduced, I helped teachers mark unfamiliar papers during free periods or lunch hours. Helping kids grow into knowledgeble, competent adults was a dream.

I don’t remember exactly when I realised it was a dream I’d never manage. I think it might have been the time I attempted to get back into work, attending one of WINZ’s week-long IN2WRK courses, writing my CV (and helping others with theirs, as many of them had never done one before and some didn’t even know how to use a computer) and sending it out to countless retail outlets, food preperation jobs and whatever else I thought I could do. The co-ordinator said I’d be a great secretary, until I told her that my disability makes it difficult for me to use phones – especially with strangers. All of that resulted in an interview at Whitcoulls. I didn’t get the job because of the way I’d left my last ones: in denial, trying to work through panic attacks, once passing out at work, and always moving on to the next job before the old one could fire me. I hadn’t wanted to admit I was sick. I hadn’t wanted to have to go onto a benefit, especially a sickness benefit. During that second attempt at working, I had another small breakdown, and that was probably when I really understood that teaching was far too high-stress a job for me to be able to handle.

Ironically, it was the February 22 earthquake that changed things. It turns out a job that doesn’t have an interview process, that doesn’t look up your previous employers and ask questions about how you parted, a job that is vitally important, a job that distracts you from the utter nightmare your city’s turned into, is really good at motivating you even through illness. That was what the Red Cross offered when it put out a request for hands to do data entry. Which isn’t to say it was perfect – I’m pretty damn certain it only exacerbated my PTSD, and I left work crying far more than once. We didn’t get much training and in fact none at all when the call centre moved to our office. But it was a very situational job, too, and in the end almost all staff were phased out by February 2013. My sister stayed; I didn’t. I’d already gone back to school part time, studying extramurally so I didn’t have to attend classes and only needed to keep track of assignment due dates and final exams. When I left the Red Cross for good I went full time at school, the first time I’d done anything full time since I was 20.

A few months later I was getting off the plane in Wellington. I wanted to get out from the rebuild, the crippled local government, the looming shadow of CERA. I knew a lot of people in Wellington who wouldn’t start conversations by asking how my house was or chat about problems with EQC. I stayed for a few days with two friends, then went to a hostel, then moved into a house. I bought a breadmaker and a computer screen and a panel heater. I went to a couple of tweet ups, got a pass to the zoo, and learned where at least six suburbs were.

Last October or so, I decided I should compound on those successes by getting some real treatment for my pre-existing conditions and the PTSD from the earthquakes. I asked my new doctor for a referral to the DHB psych services, and he said that I would probably be better served by the Phobic Trust, down in Newtown. Nowhere near my house, but in walking distance to the zoo, so after appointments I could settle down by visiting the tiny monkeys. The downside was, it’s expensive. The assessment was about $120, which I put on my credit card and had them fill out paperwork so I could claim it back from WINZ through a special needs grant. I applied for the disability allowance at about $60, which would cover almost half of the $129 a proper appointment costs. And, because things were starting to get pretty tense between me and the third flatmate and it was something that had been suggested several times before, I applied for the supported living payment, which used to be called the invalid’s benefit.

Those forms were all taken to WINZ on December 5. The woman I was dealing with went through each one and had me initial some things I’d crossed out and tick a couple of boxes I’d missed. She double-checked I was allowed to get the SLP while studying. She told me that I had everything I needed. She went to scan everything in, kept some of it, and gave the rest back. She told me I’d hear shortly.

It took two weeks to find out my SLP had been declined.

It took over a month to find out that, in fact, I did not provide enough information for the disability allowance. They have so many different forms it’s almost impossible to know which ones need to be combined.

It’s now been about six weeks of sending emails back and forth, consulting benefit rights advocates, writing letters requesting appeals, and waiting. Always waiting. During those six weeks I think I’ve spent more time crying than I had since I moved here. I’ve considered suicide. I have two plans that I know are workable and plausible. I’ve had to put food on my credit card because I was so low on fruit, or dairy, or meat, I’ve had days in a row where I wasn’t eating because I couldn’t even leave my room knowing anyone else was home, I’ve sat with my phone in my hand trying to ring crisis lines and not able to do so (see aforementioned trouble with phones). I’ve had fleeting fantasies of turning up at the WINZ office and doing… something, god knows what, that would convince them I need help. (Preferably financial, but practically more likely psychiatric or criminal.) I’ve sent long emotional emails to them. I’ve sat on Trademe poring through properties to rent that I’d never be able to afford on my current budget. Right now I’m on the first day of a “1-2 day” extenstion to a history essay I’ve been looking forward to writing for the whole summer semester. I’ve nearly hit the word count, but I can tell it’s mediocre, it’s shallow, it doesn’t explore the things I want it to. I still need to do all the citations. I can hardly look at it.

WINZ is killing me. I don’t know whether or not I mean that literally, but emotionally it’s true. I honestly can’t see beyond a point where I have to drop out of school for the third time. Either I graduate in 2015 and get to find work, or… I don’t know.

Under the current system you can be denied an SLP by someone with no medical training. It might be a nurse, or it might be a social worker or teacher. They don’t have to tell you this and most people don’t know. They’re supposed to tell you you can appeal, but don’t always (they didn’t tell me, but I knew from other sources). If I don’t win the appeal I have a choice of the Student Allowance (for which I must either maintain full-time status or apply for limited full-time) or the Jobseekers Allowance with Medical Capacity Certicate saying I’m unable to look for work – but I won’t be allowed to study, either. Most students receiving the allowance top it up with part time work, something I can’t possibly do, nor can I borrow the living costs component of the Student Loan because the allowance makes me ineligible.

The worst thing is, through all of this I haven’t been able to access any professional emotional support. That specialist I want to see? Yeah, an appointment is literally more than half of my income, and my rent is already at three fifths. It’s impossible. So I’m struggling against a government agency with just my friends to help me, while they don’t even have to pay a doctor to decide I’m not sick enough for a slightly-more-livable income.

Reasonable accommodation

Despite what you may surmise from the title, this is for once not a post about housing. If you’ve been on Twitter the last couple of days you might have noticed that I have an essay due today. I’ve just emailed the teacher asking for a 1-2 day extension though, because this weekend has been HORRIBLE. And, given that I don’t know how things will play out with WINZ, and even if they go well I’ll have to deal with saving money to move and finding somewhere affordable (which even on SLP with the extras I can get there still means “basically a slum”) and buying a bunch of furniture, that’s not likely to change that quickly.

Which means this year I think it’s time to email my teachers at the start of each semester letting them know that in some ways I may be less than the average student. Ideally it won’t come up at all, but if it does, I don’t really want the first explanation to be on or after a due date when I can barely think and would rather be huddled in a corner sobbing.

Also, I was thinking, wouldn’t it be awesome if people’s first contact with WINZ could be an appointment where they sat down with someone and told them exactly what they were having problems with and got to discuss potential methods of fixing it that are NOT practically impossible, judgey, shamey, or which require constantly bringing forms in and getting letters demanding more stuff every week? Like, actual help, possibly with discretionary powers for people who are in a seriously stuck situation? A strong working relationship between WINZ and HNZ, for example, would be fantastic.

Sadly National’s in charge, so not something we’re likely to actually see.

WINZ; “affordable” food

As a brief pre-note, I have had further discussion with WINZ and while they have not mentioned my special needs grant, it seems that they haven’t lost my disability allowance application, they just didn’t tell me at the appointment that I was missing some information, or something. I should probably reply again to see if I can get them to clarify that explicitly and to get an answer about special needs but ughhhhh I cannot stand to right now. I’m hoping it won’t take too long before I get some stuff back from the appeal request.

Anyway.

Someone posted a link on twitter to an article about this woman who was posting recipes on Facebook to feed a family of 6 cheaply and yada yada got on tv etc and now she’s launching affordable food boxes. The article notes that there are other boxes on the market but “she says this one keeps to a strict budget so anyone from students to beneficiaries to large families can afford it.” It is $150/week.
Continue reading

Appealing

I’ve had some information about appealing WINZ decisions. While there is a form for a standard appeal there is not for medical decisions so instead I’ve written a letter and at some point have to decide if it’s done, sign and date it, photocopy it and send it. I also need to print out copies of all the emails I’ve sent and received. Medical appeals are done through the medical appeals board, each member of which has to have expertise in sickness/disability, though the legislation doesn’t actually say they have to have expertise in the sickness/disability of the person in question.

I’ve asked for a few things more than just an appeal based on the advice I got. I also want the reasons for the rejection and process used to reach them, evidence that I was informed of my right to appeal (I was declined over the phone and nothing about appeals was mentioned) and evidence that my claim was sufficiently investigated, including who investigated it and what their qualifications are. I know it went to the regional health advisor, but apparently these are often nurses, teachers or social workers, not doctors or psychiatrists. Finally I asked that the board have expertise in my health issues (as referred to above) and that if they find in my favour everything gets backdated to the date of first contact (s11D(7) of the Social Security Act 1964) which was 5 December last year.

Since I’ve been receiving student allowance since then, if that happens they’ll apparently give me the difference, which could still be a pretty significant amount per week. BUT… before that happens I have to prepare a written case for the appeal board and probably turn up to it (I don’t have to, in which case WINZ doesn’t send anyone either, but it’s probably best I do), which sounds slightly terrifying. My case will look a lot better if I can prove that they’ve lost anything, not recorded [calls or] emails I’ve exchanged with them, etc, and sometimes decisions are overturned even if they were technically correct because of shit like that. Considering they do seem to have lost my applications for disability allowance and special needs grant, that’s not a good start. (They haven’t emailed me back since I corrected them on what form of accommodation assistance I was receiving and said I’d already applied for said things, either.)

Scuse?

Is it just me or should WINZ staff really know what they’re talking about? I was informed last night that I was receiving the student allowance which comes with accommodation supplement, which, no. It’s almost impossible to find this out from the website so it’s even more important that staff are giving correct information. Student allowance comes with the accommodation benefit, which is $40 in most urban areas excepting Auckland. The accommodation supplement for a single person would be around $100 in most of the same areas.

Maybe a small detail, but one that has pretty major implications for someone’s budget when they’re living on a $206 student allowance.

Never-ending WINZ updates

Last week I’d noticed that only my normal amount of benefit had come in, which was an issue because my disability allowance should have been processed. I generously gave them the benefit of the doubt because of Christmas holidays. However this week I received the same amount again. I have now written a lengthy email pointing this out and detailing my financial/health situation, but I haven’t had an auto-reply back saying they’ve received it, so if I don’t get a response in the next couple of days I guess I’ll have to send it again. Because guys I would really like to actually see the psychiatrist I have lined up. I am definitely at the point where I have to consider whether share housing or flatting is more preferable because the likelihood of being able to actually live by myself is so damn low right now. But, looking at Newtown specifically, a lot of the flatting rents are well out of my price range anyway. Not all, but a lot. I may also need to pick through my feelings regarding complete strangers vs “friends of friends” which shouldn’t really be any different but there you are.

Outside of WINZ? Climate news is depressing as hell, John Key is an unidentified embarrassment, white people have opinions on Māori culture, and my flatmate’s behaviour is even more obvious now that the landlord is back. (On the plus side, doggies, though they’re being dicks with the barking at shit.) I have some forms for subsidised housing but I have this imposter syndrome bullshit where I really don’t feel like I qualify and also I really hate filling out forms. There’s so little room for flexibility or knowing how important a question is or being able to elaborate on points.

News

On the fifth of December I had an appointment with WINZ where I applied for the supported living payment, which used to be the invalid’s benefit. I’ve had the forms for ages but it had taken me weeks to get everything I needed – supporting information, signed declarations, a form filled out by my doctor, plus this really thick booklet that was the actual form and a personal assessment talking about what I felt I could and couldn’t do. All in all at this point it’s probably been about six weeks, maybe a bit more, since I started the application. I was told that first it would have to go to the regional health advisor, who would decide whether or not I qualified, and if I did it would be processed. The processing takes about five days, but the assessment would probably take a couple before that.

Actually, it took two weeks. In the meantime I tried to tell myself not to assume anything, not to get my hopes up, but I kept finding myself looking at rentals or trying to make a new budget work or looking at ISP deals. Because the main reason I wanted it was that the little extra money it gave me (it’s about $55 more than the student allowance, but importantly also qualifies you for the full accommodation supplement, which student allowance does not – in the end I’d be about $110-$115 better off) would have possibly allowed me to get a place by myself. Something I desperately want, and probably need, because no matter what people say when you ask them, they don’t have a fucking clue about mental illness.

At the same time as the SLP I’d also applied for the disability allowance, which is a $60/week (max) payment to cover medical costs related to a disability; I’m going to get it to pay for my psych appointments every fortnight. They really should be weekly, but the specialist costs $129 a session. If you can do basic addition you can see the problem there – the extra $9 would hopefully come from the $115 more I’d be getting.

My case manager just called me to say that the regional health advisor had decided I am not eligible for the SLP.

So what does this mean? Basically, that right now I’m still on $246 a week. On that income I’m paying all my bills and I have $28 a week for food, but I’m not saving any money, I rarely get anything frivolous or really extra at all, and occasionally I still need to put something on my credit card, which I don’t have extra money to pay off. From that I’m going to need to find another $9 a fortnight to cover the shortfall for the psych appointments and I’m definitely not going to be able to find a self-contained 1 person rental, plus have enough to pay bills which could be another $40 or more a week for power and internet. I could get a room in a sharehouse but I am 99.5% sure that would just lead to exactly the same problems I’m having now.

It’s possible there’s a way to appeal the decision. I don’t know. Right now I’m not ready to start looking into that, I’m still processing. And glad I didn’t already tell my flatmates I was thinking about moving.

What we have to look forward to

If you’ve been following changes to the welfare system over the last year or two you’ll be aware of the increasing standards for qualification for the invalid’s benefit (sorry, Supported Living Payment) and may also have seen a couple of news reports about long term disabled clients being referred to private companies for assessments. This is following the footsteps of the UK’s disability support system, where Atos, a French company that bills itself as “business consultants”, is in charge of assessing whether claimants are fit for work. I’ve posted on this issue before (try the ableism category if you want to see those posts) but now I have a whole heap of new links I’ve been reading!

Firstly a personal account: Part 1, where he applies for the JSA (we have the same thing here – Job Seeker’s Allowance), followed by Part 2 where he tries for the WCA (I believe this is our SLP).

The main reading for today, though, is this piece from the Guardian. The article itself is very illuminating, describing the statistics and ratios Atos uses to determine how many people are allowed to be classed as unfit for work (about one a week, it seems – 97% are supposed to be found to be ready for work within two years), but the comments very much add to it, with a lot more perspectives on what the assessments are like for claimants and the many bad calls they’ve made. Some people also have some more interesting numbers, because us disabled folk like to educate ourselves on the systems that control our lives. I would probably allow yourself a while to get through this because you might need to take a few breaks from the unrelenting horror show.

I have very little doubt that if National gets back into government next year we will head further down this path, even if not the whole way. The changes already made very much resemble the ideology of the UK government and we’re already seeing the introduction of private companies. Somewhere in the comments is an excellent point: Private companies can be taken to task, legally, by their shareholders for not making every effort to increase profits. This makes them fundamentally incompatible with providing a suitable service to the disabled when they’re getting paid for getting people off disability benefits. They are legally required not to act in the claimants’ best interests.