When I first built this blog not so long ago, I thought it would be a new start for me. For 2 1/2 years from when I was forced to give up my professional work, I had let the fear of welfare reform dominate my every day thinking processes to such an extent that I couldn't really function psychologically and creatively like clarebelz functions.
Physically, most days are either very bad or much worse than that. I have little windows of 'very bad' that can allow me to continue to be a little creative; writing for a short time, painting for a short time, playing the piano for 10 minutes, and the funded few hours out that allowed me to out and paid for expenses for hobbies or for a meal for example. Not exactly enough to satisfy me creatively, or for my need to be away from my home at times, but at least something to look forward to in my cosy little prison.
On the Friday before I built this blog some kind of 'switch' was flicked back on in my brain; I finally uploaded some of my portfolio of film and music, and even started composing a piano piece and an electroacoustic song again, also lyrics for a new song. I thought to myself: 'I'm back!! Whoopie!! Clarebelz doesn't give a damn, I'll get though welfare reform and my extreme family problems, because I'm back!!'. Then, as you may have read just over 2 months ago, the Local Authority dropped a further bombshell and informed me that they were going to cut my care package by 80%.
During the first assessment the lady told me she would get back in touch three days after the assessment to arrange another visit to confirm that the LA were cutting the care package from 32 to just 7 hours a week, and that any help to get out, any mileage or bus fares for the carers, and funding for hobbies and social activities was to cease immediately.
That was over 2 months ago. She phoned again for the first time last week. For 2 months they have left me and my carers in mental anguish not knowing what the future held, only that one of the carers would lose her 16 hour a week job, and I would be left completely vulnerable once more. So I shut down; I couldn't write anything here. I stopped sleeping. At first I stopped eating properly; now I'm going through an eating phase, and the little weight I've gained is crippling me due to my muscle weakness and the accompanying joint problems. I sank back below the sea with all of the other desperate people; slowly drowning again.
I didn't think that I could challenge the LA's decision; they didn't tell me initially that I could. I thought that because they said: 'we don't fund this [the majority of the things my carers do] anymore', then that was that; I couldn't challenge it. Very kindly, some people with a knowledge of social work posted advice under my previous article, but I was poleaxed; psychologically coshed by the anxiety and the hopelessness.
A further appointment was scheduled this week for me to sign off on the care plan. Suddenly, I decided that I mustn't give up, so I went onto the internet and telephoned a disability organisation for advice, and the advice was 'don't sign anything' and instigate a complaints procedure, then come back to them.
So a few hours later the social worker lady arrived. I politely said that I'm taking independent advice at present, so I can't sign anything, and I hoped I hadn't wasted her time. Well, there was a complete transformation of attitude compared to the last appointment. She touched my arm and said she did not expect me to sign today, she already brought the complaints procedure with her, and that the session was about getting down to the 'nitty gritty' of my needs. I told her I didn't feel that I had anyone to turn to any more, that it seemed to me that social services were not there to support people now, just officers for cost-cutting exercises, which made me feel pretty desperate. She said she understood, she was there to support me, and that she really had 'fought my corner'. Further, she was stuck between a rock and a hard place in the whole of the matter, and it was becoming a nightmare for all the social workers involved trying to balance disabled people's needs with the requirement to make cuts.
I thought to myself that perhaps I had been too much on the defensive last time: had my impression of her been completely wrong? I was so tense and wound up when she visited, almost terrified, that her cheery attitude and implacability wound me up. It was made very clear to me nonetheless that the offer of hours was final, and that there was no element of personalisation involved in that package.
I invited the social worker in and we sat down to discuss the care plan in detail. I saw the first template for the hour of care that they were allowing me. I told her that it was impossible for the carers to do everything in one hour. She told me to bear with her while she explained. She turned another page, and there was some more time added for lunch, then another for tea time, then another for evening. I was gobsmacked; she was true to her word: she had fought for me after all. There were still some restrictions on what carers can and can't do for me, for which I will have to pay for privately now (like social activities/hobbies and certain odd jobs), but all in all the offer was very fair: they have increased it to 22 1/2 hours per week as opposed to 7, and the package is still quite personalised. A cut of 9 1/2 hours in total, but still enough to deal with my basic needs. Sadly though, the main carer will still lose out, but I'm trying flat out to re work my budget to see if I can afford to pay her extra in any way.
I'm still a little skeptical however. Why the sudden change? How can you go from saying 'we don't fund that' and 'there's no personalisation of your budget', to almost the complete opposite? I can think of only two reasons for it: a) last week I mentioned disability rights, laws, and equality issues when talking to the social worker, and how my health and dignity was important, therefore to save any costly challenges to their decisions the LA decided to propose an enhanced package, or b) the social worker herself had a change of heart after speaking twice to me last week, and actually did decide to fight my case, and so a) is a result of that.
When I think back to what I perceived as flippant behaviour last time she visited, I wondered if she behaved like that to distract herself from the difficult circumstances she found herself in. It can hardly be an easy job to have to remove support from vulnerable people. If I really was wrong about the impression she gave to me, I'm sorry about that. She came up trumps for me in the end, and the whole matter was resolved in a dignified and caring manner.
I honestly think though that if I had just accepted the original offer, the social worker would have visited the following week, I would have signed the forms and that would be that. Who could blame her if that had happened? She had to find cuts somehow. I think of all of the other people in my area however who are without an internet connection, or any access to independent advice, and I wonder how many of them must have rolled over and accepted the initial assessment. I feel guilty about it all because even now if I decide to initiate a formal complaints procedure, it could mean that other people benefit, but I'm so weak and have been through so much this year that I hardly have the energy and wherewithal to fight my own corner: I truly regret that. I don't think that 'I'm special'; there are so many people who are much worse in health than me, but I have the ability to put forward my case. It was even suggested to me when I graduated that I develop a career in social work because of this, but the constant traveling was a deterrent.
One thing is very clear nevertheless: we should always challenge a decision when it relates to our well-being. In fact, over the coming years, we are all going to have to keep challenging these decisions if we are to survive the most savage cuts known in western civilization ever.