Wednesday, 24 February 2010

I'm Just a Tad Annoyed......

Written into Sarah's Care Plan, looked at and if necessary adjusted every 6 months by interested parties, is 6 hours per week of being out and about doing interesting and beneficial activities with a care assistant supplied by Social Services

Rhondda Cynon Taff, the area we live in, sees fit to use care workers from agencies and other sources, presumably because it is cheaper. The outfit, which at the moment I will not name, chosen by Social Services to meet Sarah's needs have only been doing the job for 4 or 5 years, long enough to have ironed out any starting up problems you'd think. They originally ran retirement homes and did home visits to the elderly to get them up in the morning, help them with bathing and getting them settled down at night, checking they were taking their meds etc. 

Suffice to say, these very capable and friendly ladies and their equally worthy employers know very little about autism.  They all seem to have come across it and know the stereotype, but as anyone who spends their lives around autistic people knows, they are all different and surprise surprise, they've all got different needs. Now if a company says they can supply a service, you kind of expect them to come up with the goods. Obviously if their staff are not trained for the task they are being asked to perform, you'd think they would just say 'no we can't do that', but no, they just send them out anyway.

They do not manage to keep the staff they have for very long so there is a constant change of care assistant coming out for Sarah. Change is the operative word here. Change and autism don't go together to well and it has taken us a year of disruption over changing carers to convince Sarah that it's ok to go out with someone she doesn't know too well, leaving me feeling like a proper hypocrite, because I know damned well that I wouldn't go out with a different stranger every week. Why the hell I feel I should be grateful that anyone comes at all I don't know, when to be brutally honest, I'd prefer them not to come at all. I know they will just end up wandering aimlessly around Matalan and eating in McDonalds because there is sod all else to do.  And I wish I knew what happens to the request I make at every care plan meeting that Sarah does not eat junk food, which is greeted with nods of approval and placed in the plan, a copy of which, apparently, goes to all care providers.

So today I am livid because Sarah is already having a difficult week, (see previous post) and in the spirit of making these outings more Sarah appropriate we made arrangements last week to swop some hours around so that she could go to a Gateway club which is about a half hour drive away tomorrow evening as this would be of far more benefit to Sarah than wandering aimlessly around crappy shops. Seemed like a damned good idea to me.

The care providers office telephoned me at lunch time today to say that yet another new face would be coming to pick Sarah up at '12.30pm tomorrow afternoon because no one was available for the evening, is this alright?'  Sarah has been looking forward to and talking about going to the Gateway club all week and now I've got to tell her that it is not happening. Livid doesn't really come close to how I was feeling after that phone call, incandescent is probably closer to the truth.

Sarah is now a very unhappy young woman, still expecting me to perform a miracle tomorrow morning and somehow get her to the ball tomorrow night, which to be honest is not going to happen.  So tomorrow morning is going to be spent on the telephone, probably leaving messages and not actually getting to speak to anyone with the slightest knowledge of what I am talking about but being terribly sorry.  

That's it, rant over, got it off my chest. There is nothing more to be said or done on the subject today, thank you for reading/ listening if you got this far. Well done if you did, I would have probably have ducked out 2 paragraphs in....


  1. Well I read it to the bitter end. Dammit - that's bloody awful. Not that me saying it is much help. Hope it gets better somehow. Can you write a stiff letter to someone? Or lots of people? *Sigh* See now I am angry by proxy, and I'm grumpy at the best of times.

  2. I'm sorry to hear of the frustrating experience you are having withe care for your daughter. It's a shame.

  3. It's a disgrace. Support in the UK is absolutely disgusting and isn't getting any better. What happened to our campaign with the NAS called, "IExist" ? Social Services have a lot to answer for. It is imperative in my opinion that these carers have adequate training in autism if they are to work with an autistic person, child or adult. Don't autistic people matter? Aren't they important enough to have a professional and trained carer to support their needs for a short time? I don't blame you for being furious about this; I'm seething for you.

    It's good to meet you btw!
    CJ xx