Showing posts with label employment and support allowance. Show all posts

On working. And sleeping. Mostly sleeping..

These days, all I can think about is sleep. When can I go back to bed? How can I fit in a few more hours? The January dark and cold doesn't help, but even on a beautiful sunny morning like today, going back to bed is all I'm looking forward to. I've only been up 20 minutes. 

 I've been in work for about 10 months. I think. One of the most difficult challenges at the moment is that I can't think properly. That's fine when it just lasts for a couple of days; but this has been months. More months than I can count without losing track. I know it was October things started to really slide, but my brain won't function sufficiently to work out the months between then and now. 

 I did start picking up a bit. But then I went to London for work, the taxi I was travelling in hit a pothole and I ended up stuck in a London hotel room with spinal dislocations and whiplash. Then, well, it's winter. So I got a bug. Then a chest infection. Then the bug just didn't clear. Somewhere in all the middle of that it was Christmas and New Year. Apart from a brief few hours with family, they went pretty unremarked. Mostly because of the 'when can I sleep again' thing. Did I mention the sleep thing? 

 The narrative surrounding work is that its good for you, good for your health even. I'd like to believe that. I'm sure its true for many people. Work has definitely been good for my mental health. I absolutely love my job. Working with Gary Bourlet and the other self advocates we've supported is a pleasure and enormous privilege. It gets results too. One of Gary and Shaun's ideas was warmly received by the Employment Minister who is looking into possibilities of making it work. 

 So yes, the job is great. My colleagues are fantastic. I'm employed on an incredibly flexible set up. I can't imagine a better employer. In theory I have the freedom to work whenever I want, so long as I get my 16 hours a week done. And of course I don't have to do them all in the one week. But the convoluted tax credits vs means test benefits rules mean I can't reduce them to say, 10 hours a week. Then I'd have to go back onto ESA. And then apply for permitted work. Politicians talk alot about how Universal Credit will be the answer to all this. But then Universal Credit functions about as well as my spine. So I shan't hold my breath. 

 Which was all ok. But then it was summer and I had a bit more energy. And the upper spinal dislocations weren't quite as bad at that point. But they are now. Just holding my own head up is hard work. I've seen babies with better head control than I've got. And after months of failing to be able to find the right words, to not be able to write, or to even think coherently..they're sort of coming back. A bit. 

 And as it turned out, there are certain types of brain damage that go hand in hand with the kind of spinal trauma I'm regularly experiencing. So having wandered around muttering "I've got brain damage" for months might've been more accurate than I'd thought. 

 When I tell people how hard this is, how at the moment all that's keeping me going is the thought that if it all gets too bad I can go back on ESA, but that I really do love my job. They say that's sad. 

 But they don't really understand. Not any of the work is good for you people. How can anyone possibly understand what this is like without being in a similar situation. Or how, even with the most supportive employer in the world, how the pressure just increases as you fall further behind the tasks you need to do, but your brain just will not work sufficiently to order or achieve anything. My employers don't put any pressure on me. But its there. Inside me. And there is an election on the way. That sort of imposes another timetable on everything.

 Because we all want to believe that work is good for people. And in lots of cases it is. Apart from when it isn't. Even when I'm doing well and feeling ok, I'm managing work by not wasting spoons on anything else. Including washing and dressing. I am not convinced that is good for me. Its certainly not good for the people around me. But given I'm so exhausted I don't want to see, speak to or do anything, the dodgy smell is less of an issue than it could be. 

 There's alot of talk amongst disabled campaigners about moving from the Support Group to work. The holy grail for everyone is 'flexible working'. I know, I spent years believing that if I could just get the right job, with the right set up, then working would be possible. 

 And it sort of is. So long as I do absolutely nothing else in my life. So long as I use my 4 or so functional hours each day on nothing but work. This weekend, thinking I was getting better I went out for a few daytime hours. It was the first time since the London whiplash incident. The outside felt jarring, surreal. I went to a meeting, which if I'm honest was more work than not work, then went to bed. The next day I met an old friend for coffee. Then I went to bed. Then I started projectile vomiting. And it didn't stop. Splatter pattern ratings were assigned. As ever, when vomiting, the force pulled at my spine. All the good work my physio had done two days before was undone. 

 Spoonydoc has written this excellent piece in response to the current discussion about moving straight from the support group to full time work. It really is excellent, so do read it. But I can't remember the point I was trying to make anymore. I've been writing for 20 minutes or so, and awake for an hour. I'm so tired nothing will keep straight in my head. I need to go back to bed. But I also really do need to use some spoons on getting clean. The post vomit smell is bad enough for a day. Beyond that, its beyond rank. 

 But showering takes energy. Energy I simply don't have. 

 What I need is just to turn everything off. For months. To sleep as much as I need, to focus on the routine of getting washed. At least more days than not getting washed. To eat well, to spend time on physio. To try and find some form of exercises that will assist my feckless, workshy neck muscles to remember why they exist and hold my bloody head up for me. 

 But that's the key difference between paid work and being on an incapacity type benefit. Even if you're doing lots of voluntary work..voluntary is just that. When you need to focus on your health more than anything for an undefined period...well, you can. You have an income to allow you to do so. Sure, its not much, but unless you've also got an enormous debt, it is usually enough to keep a roof over your head, have enough to eat and pay the bills. 

 Other people tell me this is really sad. I already know that. I live it. I live with the sadness of never having the energy to do anything. Of knowing that I'm constantly irritable and unpleasant to be around. With the fear that what I'm doing to my body will ultimately result in a spinal dislocation so severe the cognitive impairments it causes will never go. That the voice loss won't come back. Oh and the quadriplegia risk. 

 I love my job. I quite like working really. Or I think I do when I'm not so exhausted. I certainly love the work Gary and I do. I must do. I don't do anything else. 

 But please, don't make the mistake of thinking that this is easy. Or that work really is good for everyone's health, we just need to think of work differently. Because frankly, that just isn't reality for some of us. 

 There was probably meant to be some sort of concluding thought to this. But I can't remember it. And I need to go back to bed. 

Journey to Work Part 5 - How can I claim expenses like Maria?

Today marks the start of my fifth week in work. I think. To be honest it's all a bit tiring and I'm no longer sure. I love my job, but will that be enough? And did I mention the tired?

What I do know for sure is that my benefits stopped on March 10th the day I formally started work. Since then I've applied for tax credits, housing benefit and council tax benefit. There is a four week run on of Local Housing Allowance so that has continued to go into my bank account. But that's it. No tax credits. No letter acknowledging tax credits claim has been received. No wages til later this month. Oh, and no way of talking to anyone at tax credits to check they have got my application, just a recorded message explaining they are taking a minimum of five weeks to process claims and won't talk to claimants until after that time is up.

This is why people end up with payday loans or go to foodbanks. There isn't another way.*

If I make a genuine mistake filling out a benefits application I get fined £50

But if I were a Cabinet Minister, a former Minister for Disabled People, who had pushed through these cuts affecting disabled people and working people...



*Please don't worry - I have friends who are in a position to lend me money until wages and tax credits start properly, I won't have to go to a food bank or payday loan company. But how many people have friends willing and able to lend them hundreds of pounds for an undefined amount of time? 


 

Journey to Work Part 4 - I'm finally off ESA!

After more hours on hold to various DWP departments than I care to think about and several discussions with concerned, expert DWP advisors about whether it would be better for me to do permitted work than full on employment....

I've managed to sign off ESA! Quite why it is such a difficult process is beyond me, the automated systems the DWP are using reduced me to tears, but all the staff I actually spoke to were excellent. This doesn't bode well for the 'digital by default' futureproof benefits planning the DWP are hanging everything on currently.

So having decided I can only face dealing with one benefit department per day, today's task is to try and sort out housing and council tax benefits.

And to try and squash the panic triggered by yesterday's DWP advisor asking me if moving into work was a change of circumstances for DLA. I don't see why it should be given I'm working part time from home in my pyjamas*. But, if that question does trigger the system as a change of circumstances it will also trigger an application for PIP.

There's simply no way I can remain in employment without DLA. There's also no way I can manage to juggle coming off several benefits, applying for several different benefits, deal with the social care implications, actually do my job AND apply for PIP.

So, should this be treated as a change of circumstances and the PIP forms arrive I'll have no choice but go to straight back onto ESA and stop working.

I'd really like to congratulate the government on having spent obscene sums of money on 'welfare reform', terrified disabled people and somehow managed to make it MORE difficult to move into work. As achievements go...that's quite an impressive one..

*frequently smelling of sick, so it's a good job I'm avoiding face to face meetings! 

Journey to Work Part 3 - My First Day - I seem to still be on ESA..






























































































Brown Envelopes & Bureaucratic Bullshit (Journey to work, Part 2)

Two DWP envelopes in the past two days. Nearly gave me a heart attack when I spotted them. The first was what used to be a standard 'rates of benefits will change' letter - but the language and order of information is both intimidating and confusing. It wasn't until I got to page 3 that I realised I didn't have to follow the 'mandatory reconsideration' process outlined on page 1; in fact I don't have to do anything. Good job I've got an LLB/Hons, its only three years training in how to read legalese nonsense that has equipped me to occasionally be able to translate DWP speak.

The second letter was better news - my equipment will be funded by Access to Work. Which is great. Even the expensive bits of it I explained I was highly likely to be unable to use. 'Just try it out' is good advice, apart from the bit where what you're trying out costs hundreds of pounds, isn't the answer and is really being imposed instead of providing support worker support.

As for when I'll know about support worker hours, your guess is as good as mine. The battle over the 20% limit continues. All the guidance read by myself and other disabled people leads us to the same conclusion - the 20% limit is being applied incorrectly. The consistency in the incorrect application by advisors in different locations leads me to speculate that the advisors have been trained to provide the incorrect application, perhaps to limit the costs of Access to Work despite its financial return for the Treasury. Oh, and that small matter of 3.5 years of 'work is always best' rhetoric..

Ah well, my employer and I have only been waiting for this since early January. What's another few weeks when you're waiting to come off benefits and start work?!

The 'Scrounging Scum' to 'hard working, tax credit claiming, socially acceptable scrounging' journey

First published on Disability Now - AtW: Denying Access to Work


With government rhetoric stressing their keenness to get more disabled people into work you might think that their scheme to support disabled people in employment would be an example of well-oiled machinery.
But when, having got a job, Kaliya Franklin set about getting the support she needs, what she encountered was a confused tangle of red tape and bureaucracy.
I’m very, very lucky to have a potential job with an employer who is willing to bend over backwards to accommodate my fluctuating and unstable condition. Work from home? No problem. Work from bed? No problem either. it’s like the holy grail for people with a fluctuating condition.
Naively we thought that Access To work (ATW) would be a rapid, streamlined process providing all the support we would need to make this unusual employment situation workable.
Access to work is one of the few major success stories in relation to government spending – for each £1 spent by ATW, the treasury gets back £1.48 in income tax and national insurance. It has also been described as the DWP’s best kept secret. Employees and employers like the scheme, but given that the number of ‘new starts’ has been falling since 2010, is Access to work actually helping people to access work?
ATW is intended to provide the support an individual needs to carry out their job, whether that support be in the form of equipment, accessible transport or a support worker. Recently there have been various changes to the provisions ATW can make and in what circumstances. With classic timing, I applied for support just as these changes were taking effect. I wanted to be sure my  package was in place and would provide the support I needed before starting work.
That was a wiser decision than I realised – it took 4 weeks for the ‘equipment assessment’ to happen and now, some 5 weeks on from applying  I have yet to hear what equipment I’ll be granted and whether I have managed to fit within the strange and complex flow chart now used by ATW staff to decide whether someone is allowed support worker hours. Funnily enough, I’ve also yet to start work. Oh, and I can’t tell my employer when I might be starting because I don’t know when ATW will be set up…the best I have is a vague ‘if you haven’t heard in another 10 days call us’.
So far my experience has been disheartening and stressful as well as confusing. ATW is working to updated DWP guidance which limits both the equipment they now provide and introduces a 20% limit to the amount of support worker hours permitted. Each advisor I’ve spoken to at Atw has been consistent in their advice – I can only have a maximum allowance of 20% of my hours worked in support worker hours. However, when I finally managed to track down that official guidance I found the advice given to me by multiple staff members to be wrong. The support I need falls into the category of ‘life skills’ – this means access skills to enable me to carry out a whole task – things like someone to scan documents for me, take me to the post office, or support me when I have to attend meetings elsewhere. The support worker won’t be doing my job, I will, but without that support I may not be able to carry out the job. The official guidance is clear – ‘life skills’ are an enabling support which is a conduit to being able to do the job, and the funding is supposed to be available for as much of this support as an employee needs.
So, not only am I still waiting to hear what equipment I may receive, but also to find out if I can have the 20% proportion of hours worked in support worker hours, even though this is in direct contradiction to the official written guidance.
I mentioned I was lucky to have an understanding employer committed to making the adjustments I need. With a 5 week delay in starting work, and no idea when the actual support offered might be in place, let alone whether that support will be sufficient, it really is fortunate. I can’t imagine a supermarket waiting for someone to start a shelf stacking role would be quite so flexible. Why would they be when there are hundreds of candidates for every job who are able to start immediately?
As for me, I’m 5 weeks into the process and far more disheartened than when I started. It’s impossible to plan properly without knowing what and how much support I’m entitled to. It’s impossible to start work without that entitlement. So, I’m still on benefits. Not in the job that’s mine. I’m far less confident about succeeding in employment than I was to begin with. Access to work should be the stable part of my support, not an additional challenge and barrier to employment.
Subscribe to: Posts (Atom)