I try to make the best of things. That’s kind of become my mantra. I can cope with a fair amount, I’ve discovered — my mother’s suicide, losing the ability to walk, losing the ability to leave the house, being put into a ketamine coma by a sadistic surgeon who punctured my lung and left me far more disabled than when he started… You get the idea.
Everyone has their vulnerabilities though. Mine (ok, one of mine) is Social Services. I wish I was exaggerating, but finding an email from them can turn me from utterly calm and in control into a shrieking mess. It’s irrational, but then we’ve not got a super history, the SS and I. A couple of years ago one social worker threatened me with a nursing home — she was trying to get me to sign something inaccurate about my circumstances. In the end I had to get legal support. It turned out ok, eventually. But I was 31, and the revelation of the power this organisation had over me was a shock.
My last Review was in spring 2012. A social worker arranged a meeting (in my bedroom) with someone from another agency involved in my funding, but failed to tell, let alone ask, me about it. The way I have to live my life, not even my family can pop in unexpectedly for a quick chat. I need to plan in advance, dose up on pain medication etc. I was asleep after a rough night when my PA knocked on the door and told me, half in tears, that two women were in the kitchen threatening to cut off my funding unless I saw them, right then. I had no choice. I cried with the pain for the two hours it took for them to go through the questions on their form with me. Thinking was hard, my speech slurred with the effort of answering. I kept hoping they’d agree to stop it and postpone - they could see the physical state I was in. They wouldn’t. That was Annual Review 2012, and ever since then I’ve been dreading this year’s. Last month I finally had to go ahead.
Thinking about this is hard, writing about it is very hard. It makes me want not to exist. It makes me feel so vulnerable, so exposed, as though all the humanity I cling to is ripped away… And I don’t suppose, in the context of everything else I cope with, that’ll make much sense to most people reading this.
An SS annual review is like a lighter version of a full reassessment. It’s a social worker coming to my house and asking about every single detail of my life — financial, bodily, relationships, you name it, and making sure I’ve spent the funding I get for my ‘care’ (hate that word.) appropriately. There are so many checks and balances on how this money is spent that I’ve no idea how they think I could be spending it inappropriately, but hey. It’s always a new social worker, and the point of it is for the social worker to keep their paperwork up to date and close the case for another year. It has no practical effect on me, unless I somehow say the wrong thing and they pull my funding.
So the review was last week, and to be honest it could have been a lot worse. Aside from her job, I really liked the unexpectedly beautiful, intelligent Rwandan woman they sent me this time. If only I thought it’d be her again next time, so I wouldn’t have to explaining my existence from scratch all over again, I could feel more optimistic. But they’ve been clear. That’s not the policy.
Every contact with the SS leaves me feeling like a child, a criminal, incompetent. I’m a being with no right to privacy. Because however nice the social worker is, that’s how they see me. They own me. And it’s not over — more emails, more questions, ones I’ve already answered. She wants to close the case and move on, I get it.
I know I am lucky to have got funding for any PAs at all, let alone live-in. (PA stands for Personal Assistant - what most people call ‘carers’). Many, most disabled people aren’t as lucky. I’m not making any attempt here to be impartial or speak for anyone else, frankly I’m too emotionally and physically exhausted. The thing is, I didn’t choose this life. I didn’t choose to be disabled, nobody does. While I could still cope with dragging myself to the bathroom and back on my own, I did. While my amputee husband and I could manage on our own, we did. Anything to avoid having to go through every detail of my bodily functions, the precise level of my disability, with a social worker who probably means well but who I’ll never see again. Anything to avoid a life hardly ever being alone with my husband, having to incorporate ‘carers’ into our home, losing all privacy. But if I want to live I have no choice.
I am not well enough to work. I’m often not well enough to eat, watch TV, or talk to my husband. But I have to be well enough to be an employer, with all the terrifying responsibilities that involves. And though the SS tell me there’s no other realistic option for me (and believe me, there isn’t), that means I also have to be well enough to cope with the cloud of suspicion that brings with it, and to prove again and again that I’m not defrauding the system.
I hate thinking about this, writing about it makes me want to tear my skin off. (Which, with a chronic pain condition, is a very stupid thing to feel!) Below is the latest (edited) email in the correspondence between me and the SS. Except my lovely husband wrote this one, with ‘guidance’ from me, so it is 100 times more assertive, less deferential and grateful than anything I would dare write to them. I love that he thinks I deserve privacy, that he believes the SS would go out of their way to lessen the painful effort it is for me. I love his optimism. He can show some of his frustration. Unlike me he doesn’t have to be a good cripple.
Dear [Very Well Meaning New Social Worker],
Here are Lucy’s answers to your latest questions. I really hope we can have done with this now - this is costing her a lot of pain. These aren’t her exact words - I’ve toned down the edge of desperation…
Confidentiality / information sharing: why is there a box for ‘no, I do not want my information to be shared’ on the form, if this isn’t an option? Does Lucy no longer have the legal right to ask for her personal information not to be shared with other agencies without her permission? She has ticked this box consistently for several years and can’t see why it should suddenly be an issue now.
Issues of payment. Most of this information we went through in the review with you - it’s frustrating that we have to go through it again. And if it is necessary information, why doesn’t the review form request it? And as Lucy has pointed out, all this information is regularly submitted to the Social Services Direct Payments Accounts Department, and you have Lucy’s permission to get it from them. She is trying to interview for a new PA this week, and instead of preparing, she’s having to repeat what she’s already said.
The weekly sum paid to the live-in PAs was agreed years ago with your department. Lucy can’t see why it is being questioned now. The live-in PAs and the relief PA do 52 weeks of the year (2 live-in PAs do 26 weeks each, and the relief PA does all 52). Again, this was all agreed with your department and is on record (and was described in detail with you in the review). The £XXX is the amount Lucy sets aside for ‘expenses etc’, which include holiday pay, training (when one PA must double up to train a new one), travel expenses for the PAs, insurance and website fees for the PA recruitment website, and the largest portion goes on Employer’s National Insurance. As always, any unspent funds are returned in their correct portions to Social Services and to the ILF at the end of the year.
Advance started helping PA Users manage their direct payments only a few months ago, before that A4E played this role. Lucy has been managing this for over 5 years. She already has to prove her competence and her honesty regularly to Social Services Direct Payments Accounts (every 6 months), to HMRC (monthly now), and submit detailed accounts to the ILF - now it seems she has to go through all the same information (twice!) for your department of Social Services as well. Are you implying she now has to have everything checked by Advance too? It’s quite enough having to run the business of employing three PAs whilst meeting her legal obligations as an employer in the physical state she’s in.
Finally, she’s just been told that the ILF want to do a review now too, and they say a social worker will be asked to be present. Could the reviews not have been combined? Could this not have been coordinated between you and the ILF? Does Lucy really have to have someone from Social Services come back now? In fact, now that she has gone through the details in this Social Services review, would you be able to communicate all this to the ILF for her, and save them, and her, the considerable trouble of yet another review? I’ve CCed in [Senior Social Worker I have seen before] here, because Lucy says she knows how difficult she found this process last time.
And not on Lucy’s behalf, but on my own, can I please just ask (beg…) that you make this as easy as you can by not asking her to go through all this from scratch every year with someone new, and that you gather as much as possible of the information you need from the paperwork Lucy’s submitted over the years and the agencies already providing thorough oversight (ie Social Service’s DP Accounts dept). You would save her a lot of pain, and yourselves a great deal of trouble!
Courtesy of Lucy in bed at In bed with Lucy