I’ve been thinking a lot about what to do with myself next year. It’s been almost two years since I got sick, and I’ve done a lot during that time. But my focus has always been getting back to work. How?
It’s really hard to make plans when I simply don’t know what’s going to happen with my health. Ankylosing Spondylitis is unpredictable, and so is my situation. It might be that I get my MRI soon, and finally get access to a TNF inhibitor, which could change my reality considerably. It might be that I stay the same as I am now. It might be that my illness worsens, in which case, fulltime work is not going to be an option.
While that’s a terrifying thought, it’s scary enough to consider that I might not even see any improvement. I do try not to think about what my life was like before I got ill, because that only makes the reality so much harder to deal with. But sometimes I remember the woman I was and it makes my heart hurt like I lost someone very dear to me. Like I am grieving.
Beyond the heartache of it is a very real sense of anger and frustration. This is not how I want things to be. I’ve had to put so much on hold, and let so much go. I’ve had to reconfigure my life completely. And while doing so has brought positive things too, it’s hard not to get the end of my tether on it all.
So yes, I am focused on ways I can move forward. I am lucky that I can still manage to write, because writing is what I always wanted to do anyway. It’s a balancing act, because sitting at a computer can be exceedingly painful and tiring, and I have to make sure I only commit to limited amounts and liberal deadlines.
My medical certificate says I can be expected to work fifteen hours or less a week, with fluctuating ability. That’s fuck all, obviously. The certificate also says I’m not expected to be able to go back to fulltime work within the next two years. I intend to prove that wrong.
I had hoped that I could do some post-graduate study next year. I’ve always planned on doing it and I thought it’d be a good, flexible way to make use of my time.
Unfortunately, it won’t be financially possible. The National government removed the Student Allowance for post-graduate study, leaving only the living costs section of the student loan available as support. This is about $175 a week, which I guess you are expected to supplement by working as I don’t see how you’d be able to live otherwise. And it wouldn’t be physically possible for me to study and work, so that’s not an option.
I checked in with WINZ about whether it would be possible to study and stay on my current benefit. The basic answer is no. The study would have to equate to less than ten hours a week, and most papers I’ve seen recommend twelve, so even if I did one at a time, I can’t see it working – and post-grad would be much more.
I find it quite incredible that it’s a financially better option for me to stay on the benefit, than to get higher education and contribute to the economy in a myriad of ways as a result. Even if I were totally healthy, post graduate study looks like a really difficult option. I worked fulltime while I was doing 300 level papers and that was hard enough.
It really doesn’t seem to make economic (or any other) sense that we’re not supporting A) people to get higher education and B) people with disabilities to get [back] into work.
All I want is to move forward, and it feels like rock/hard place territory. Maybe I should look into being a bounty hunter after all. It seems to have better perks.
Things I’d do if I had the money and the health.
The Aspire course at Outward Bound.
This lyric poetry post-grad paper at Massey University.
Anything through the IIML.
Sarah, re studying on Jobseeker Support with a medical deferral, there seems to be some conflicting advice on this. I have a personal interest in this as I have a part complete post-grad qualification and have sought a way to complete it, as finishing this qualification seems to be the only way in which I have any reasonable prospects. On the old sickness benefit one was not allowed to study full-time but were allowed part-time study. A person receiving the old invalids benefit was allowed to be a full-time student. I inquired about this matter and was informed that one could be a full or part-time student whilst receiving jobseeker support with a medical deferral, so long as one continued the obligatory job search activities and were prepared to take up any offer of work whilst one was studying. Your advice may of course be correct and mine incorrect, but it may be worth your while to check this again, perhaps with someone more senior. One needs to be aware that there are people at Winz who are not concerned with helping people undertake a course of action, in this case further study that will help their future prospects, and will actively try to obstruct such activities. I do have personal experience of this happening on more than one occasion. Obviously this can have an adverse outcome on a persons future prospects.
In your present circumstances you obviously do have an entitlement to the supported living allowance, and you obviously have not been fairly treated in this regard. I am aware of people in somewhat similar circumstances who have been denied this benefit, but have managed to get it reinstated. Perhaps it would be worth your while to try again for this, now that you have a more clearly defined and substantial medical diagnosis?
Once upon a time it was possible to take advantage of the TIA (Training Incentive Allowance) while being on the invalid’s benefit or DPB. All that changed when the Nats won in 2008 and formed the coming governments. Now one can only do up to level 3 studies, which excludes tertiary study.
As for those on Jobseeker Support, I believe they place an absolute priority on paid work. If a person is fit and healthy enough, that is under their now more “flexible” interpretation based on UK “expert advice” (looking at what people “can do” rather than what they “cannot do”), WINZ will try all to push people into jobs, just to get them off the benefit. I heard of people anticipating study or some doing volunteer work, being told that a paid job comes before that. So they had to stop volunteer work and were also stopped from starting any course they may have thought useful.
As being “disabled” (due to illness, injury and physical or psychological impairments) always brings with it challenges, and one is, that a condition one may have, may throw you back into “relapse” or worsening health again.
In view of that, I would plan very carefully, when planning some study, training or actual work.
So yes, it is not easy, and WINZ do not make it easy either. Doing part time study at only 10 hours a week will be difficult, as there will be few courses fitting the requirements. And even if there are, study will take years to complete, I fear.
As Muzz seems to suggest, it may be worth exploring whether a doctor sees there is enough reason to put you onto the Supported Living benefit. That may offer a few more option. Also with that benefit, there is an option to try out a job for up to 6 months, and to stay on the benefit. If a job may work out and can be coped with, then getting off it is possible. But it can also be a trap, as when a client does work under that option, they may eventually say, hey you can do some work, maybe not quite full time, but part time, so we will move you back onto the Jobseeker category again.
I wish I could offer more advice, but we are stuck with a crap law (Social Security Act) that they changed and made worse than it was before the Nats got into government.
By the way, here is some new info on work, and how the increasingly casual, temporary, and part time, insecure work out there actually carries health risks, which proves that “experts” like UK Professor Mansel Aylward and WINZ Principal Health Advisor Bratt are actually wrong, when going on about the “health benefits of work”:
“My medical certificate says I can be expected to work fifteen hours or less a week, with fluctuating ability. That’s fuck all, obviously. The certificate also says I’m not expected to be able to go back to fulltime work within the next two years. I intend to prove that wrong.”
Well, having read the above again, I ask, why the hell have they not put you onto Supported Living as a benefit? Your cert does say that you qualify, but your intention to work, that may go against Supported Living, as WINZ do now not only look at what people’s doctor says and fills in, they also look at “other information”.
By stating you want to work before two years may be over, you give WiNZ the perfect “excuse” to put you on the lower paid Jobseeker Support benefit.
Perhaps you must realise, your doctor is right, and state clearly to WINZ, I need to be put onto Supported Living Payment now.
They really should have put you onto it anyway, from my point of view. With SLP you may have better options to do some study, so perhaps reconsider your intentions to prove WINZ and your doctor wrong.
The system forces us to operate within the boundaries it sets us, so it may be wiser to express yourself and provide info that may be in your interest, rather than be ambitious.
This is what I just thought, further to my earlier comment.
Some thoughts on studying whilst affected by illness, disability or on a benefit. The idea has much to recommend it, but unfortunately these benefits are not acknowledged by the present administration, who instead have become obsessed with pushing people into “work”. The fact that the “work” doesn’t really exist, or that people whose work capability is restricted or highly variable will not be considered by prospective employers is something that Winz and the government seem incapable of comprehending. It would seem much more sensible to encourage an activity that offers some real possibility of enhanced future prospects, even if these are not immediate, rather than to condemn people to the uncertainty of low paid work without prospects and security. It has actually been quite common in the past in times of high unemployment for people who would have otherwise had no other option but to rely on the unemployment benefit, to become full time students receiving the student allowance. In a long term sense this was probably a beneficial thing to the economy and to those peoples future. Unfortunately many people are not entitled to student allowances, or are not capable of full-time study because of their illness or disability, so this is not a course of action available to them. Distance learning through providers like Massey University and the Open Polytechnic does offer flexibility that can enable a person, who because of the unpredictable nature of their illness or disability could not attend courses with on campus delivery, to complete a full-time course, so this is an option well worth consideration.
Even though in a financial sense one’s circumstances do not change, the transformation from beneficiary to student is remarkable. Gone is the beneficiary stigma, all of a sudden one is respectable again, and one has a purpose and something meaningful to occupy oneself with, and some prospects of a better future. From a health perspective it is generally also beneficial, something that even David Bratt and the like would have to concede. Even the TOPs courses, which I am not sure if they still operate, whilst possibly not delivering much in the way of employment related skills, certainly had social and health related benefits.
Unfortunately at Winz, even prior to the implementation of the present draconian policies, there has always been a “push people into work” mentality, rather than to take a more reasonable longer term view of what was best for the individual and society generally. One “work broker” informed me that they would force even the most highly trained people into menial work rather than give them time to find appropriate employment. This all sounds a bit too much like Mao’s Cultural Revolution in China or the Pol Pot regime in Cambodia to me, but unfortunately this is the mentality that one must deal with. Typically Winz staff lack formal qualifications and do not have the potential to obtain them, a staff composition that is unlikely to be accidental. They frequently seem to have a compulsion to drag people who do have higher qualifications or possess the potential to obtain them down to their own level, a sort of tall poppy syndrome gone mad. I mention this because it is part of a broader problem, and also because the response one gets from Winz when inquiring about the possibility of study whilst receiving a benefit, may not be accurate, but may instead be a just a manifestation of this mentality. Notably, educated Winz employees are seldom problematic, and their behaviour and consideration towards clients is much better, at least in my experience, but invariably they do not stay long in the employ of this organisation, something that is also not accidental.
So unfortunately there we have it, further education for people affected by illness or disability, an excellent idea that is thwarted by the punitive mentality of the present administration, and by the culture of Winz. One wonders when will it all end.
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