I spoke to a woman on the telephone at the local Social Services on Friday last week. As the content of that particular conversation was just so absurd I will now share it with you on my blog. Information from an Occupational Therapist had been recently received, most probably by post, and they may have been prepared to give me 30 mins for a wash and to get dressed. I declined as politely as I could. She also told me that if I needed someone to go to the local shop for me they expected friends and family to do it. I then told her my immediate family are now in heaven, and I don’t have regular visitors. It’s not always good to just have paid carers involved, anyway most of my visitors are in fact now carers. She then said she would post me details of a scheme of volunteers that maybe be able to help by taking me out socially sometimes. Fair enough you may say, not perfect but at least something over the telephone, as I’m housebound. When the letter from them arrived, it said the Volunteer scheme was only available to O.A.P.’s so I’m about 25 or 30 years too young to qualify for it as I’m only 36 years old in July. I’m stuck inside all the time, and that’s the best they can do! I already pay every fortnight for flexible carers to wash me twice weekly, and give me a hair wash which is something that Social Services just don’t do for anyone in my own area, They expect mobile hairdressers to do it instead, who in my case are not willing to move a small box out of the bathroom, it’s a very small bathroom that I’ve got, move a perching stool from another room into the bathroom from my 2nd bedroom, and then use the bathroom sink which has a fancy tap which moves up and down and doesn’t have 2 normal taps to attach a shower head to wash my hair with, then there is the problem of the hairdresser who would have to put all the stuff back again. Plus the fact it’s not always worth me getting dressed as I have both diagnosed Bladder and Bowel problems so, when it is very bad, which is pretty much most of the time, I don’t get dressed anyway. I told her straight out to get stuffed, what she was offering was, put simply, not `fit for purpose`, and now it turns out her manager has also said she should not attend a professionals only meeting my male shrink is desperately trying to organise to try to help me. It’s very clear to me now that these people are trying to close ranks to try to protect their own budgets, and us clients are just expected to just stand by and take it. We can be judged to be difficult and unreasonable if you then challenge their decisions privately or publicly, be under no illusion, clients and disabled people know what works for them, and the entire point of personalisation is so disabled people or clients make their own personal decisions as to what actually works for them. In practice the Social workers should have a say, but the clients, or their carers if appropriate, should have the overall control of their own support/services and lives, at present sadly it is the other way round. The normal flexibility in life non-disabled people can sometimes take for granted is deemed to be unreasonable, when disabled people make similar type decisions they are then deemed to be difficult. Another thing I was told was that Social Services expect clients to pay their own bills by direct debit. This clearly does not work for all disabled people, and I pointed out to her it was hardly reasonable for me to have no money at all. All I can say is I’d rather eat my own vomit than be 1 of their unfortunate clients, not only are they not fit for purpose, but what they are saying to me is total crap, and I strongly suspect when applied they know that themselves too, and others around me agree with me. I pity anyone with Multi-complex needs like mine, who finds themselves in a similar type of situation, and the government cutbacks make it even harder. Goodnight All.
P.S. I also received contact details for advocacy projects, 1 of which is already involved with me, but as a lot of the issues are within the system itself they have been unable to help change things in the short term anyhow. I was also told that I may get a hair wash when I get a disabled persons walk-in shower. As I’m waiting to move to a more suitable flat, which probably won’t have that facility, and with all the government cutbacks I may not get 1 anyway, I could be years away from having such a shower
P.P.S.The only real solid piece of fairly good news I can share with you is I got a new attendants wheelchair, which my carers can now use a bit more easily, compared to the last 1 which was turning into twisted metal and was slowly falling to bits