Disability: a full-time job
I'm quite concerned that seven hours of support from my PA no longer seems adequate to get enough done. This is mostly because getting ready to go to work takes up quite a bit more time than getting ready to sit around the house watching TV used to take. I spent this morning trying to make a dent into my sprawling pile of paperwork. (This was important to do because it is becoming an independent life form and colonizing three rooms of my flat.) All I managed to do, before my PA's two hours were up, was to put it into little piles. Then suddenly I was on my own with sixteen terrifying stacks of paper called things like 'Access to Work', 'benefits evidence', 'tax credits', 'direct payments' and 'miscellaneous' (a large pile which includes a box of whiteboard markers, three Cura-Heat pads and the phone number of the social worker who has unceremoniously abandoned me until 2008). Then I spent the morning - the entire morning - working on my tax credits form. Which involved digging out a year's worth of bank statements (I file so badly that this alone took two hours). I regularly had to stop in order to burst into tears and/or throw the form across the room, especially when it occurred to me that all this work will go completely to waste and have to be repeated, because I already know I'll be turned down on last year's income and have to apply again based on this year's. So why do I have do this senseless thing? Because it's procedure.
The concept of procedure is generally sending me a bit loopy at the moment. Once I'm done with tax credits, I have to start sending off Access to Work forms so I can claim back my taxi fares (each form has to be individually signed by my manager, once a week, forever). Then there are the hundreds of phone calls - quite literally - that my Girl is making on my behalf to every flipping agency in the flipping world, from occupational therapy people to wheelchair services ("No, we don't want to assess you for a new wheelchair... OK, now that you've complained and told us you urgently need it for indoor use at work, we'll consider getting round to it in three months.. Oh wait, Access to Work are involved, well OK then, how's next week?) By far the most fun is the four months of hell we're having over a tiny lock that needs fitting to an insignificant side gate to my building, so that I can access my own home. With this, Camden Council are breaking the DDA so appallingly that we are about to see if we can take them to court. The lock would cost about £50 and take them twenty minutes to fit, but procedure means that instead we end up ringing them every day and writing seven-page letters and getting put through to people who refuse to talk to us because we're private tenants, even though they were happy to speak to us three months ago when they cheerily agreed to do the work. So we just keep on phoning. And nothing happens. And I still can't access my flat. ARGH.
Elizabeth's recent post on Disability Time got me thinking about how much we let medical services, care services, government organizations and the like run circles around us, and we don't object. But maybe we should. Maybe it's not in the best interests of my health, independence and well-being to spend my days off - which I need for recuperation, because I'm always exhausted - finding useless pieces of information about income that doesn't count for anything and filling out forms which will gain me nothing. Alas, though, I have no ideas for ways to fight this onslaught of procedure that makes disability a full-time job. Does anyone else?
And now I'm going to get back to this tax credits form, since after spending all morning on it, I spent all afternoon asleep, and it still isn't done. And tomorrow I'm going to work, because this full-time job doesn't pay anything. It really should.
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Yes, as parent of 2 kids with probs I reckon conservatively to spend 2 hours arranging each hour of care. Add in the full-time business and 'disability associated' voluntary activities and we can forget sleep. I don't have a solution - when children were young, we lurched from one medical emergency to the next, throwing in all manner of orthodox and unorthodox treatments and therapies en route and telling ourselves things would get easier in future. They haven't - time is simply dedicated to different types of support, mostly paperwork demanded by central government, local government and voluntary bodies. Don't do something and it's simple: one's child loses benefit/a service/an opportunity/access to an activity. Could this be anybody else's role? I can't see it. "In Control" I fear simply acknowledges that parents will remain the managers of their children's lives forever.
lilwatchergirl
I don't have the complex problems that you do, but I have worked out some strategies for getting round the mental health system:
1. Ask questions of your consultant. Why are you prescribing that medication? What are the side effects? What are the contraindications/risks? Are there any other options? What are the exact results of the blood tests and what do they mean?
2. Research the subject beforehand and find out about current interventions/treatments and medications and their side effects. If you are having difficulty communicating with your consultant or don't like your current medication, print off something from the Internet from a reliable source and discuss it at your next consultation.
3. Know the system and get phone numbers/email addresses. Can you email your consultant? Can you phone them in an emergency? Can you phone for a CPN in an emergency? What about the Out of Hours service? Do they have a copy of your Care Plan?
4. Negotiate some extra medication for an emergency. You need to say that it has worked in the past and/or would help avoid an episode of illness. Get your consultant to write a letter of support to your GP.
5. Ask for a copy of your Care Plan and don't take no for an answer. It is your right to have it. Make sure it is up to date and works for you. There are two parts. Ask for the second part with the risk assessment and attendance levels and check it to make sure you agree. Get any innaccracies amended. This is your right under the Data Protection Act.
6. If you want a summary of your consultation, ask for a copy of all correspondence from your consultant to your GP. My NHS Trust automatically provides these letters.
7. For benefit claims and other issues make an appointment with the CAB or a Disability Advocacy charity and get them to help you complete the form or negotiate on your behalf.
My top tip for Access to Work Taxi's is to get an account then you only have to do the stupid forms once a month!
It didn't take much of a fight to get them to do this for me. I get my support worker at work to do the forms for me because they refuse to send me them in large print or by e-mail!
If the point of "Access to Work Taxi" is to make work more accessible for disabled people (I'm extrapolating from the name -- if there's an equivalent program in the US I haven't heard of it) ... then wouldn't it be, erm, *logical* to make the requisite forms accessible to disabled people as well?
Or is the problem precisely that it would be just too "logical' for them to deal with without going into cardiac arrest?
Bipolar Works: Thanks for the tips! I already do most of that, but alas, there are very few agencies willing to help with the sheer overwhelming amount of paperwork and admin I currently have to deal with. And requesting help brings its own work in the form of more phone calls (to which I am allergic) etc...
Beth: I'm still working on getting any kind of support *at* work from the ironically-named Access to Work, so I don't have anyone at work to help with the forms at the moment. And the taxi firm they've approved won't do accounts. One day it might all get easier, though!
Andrea: You would think. *roll eyes*