Everything Was Going So Well......

If you have visited here before you might remember that our autistic daughter Sarah, is apt to be a little volatile when faced with routine changes. When those routine changes involve transport to and from the day centre that volatility is apt to become something a touch more volcanic.  As of a Tuesday last week the bus has been arriving an hour late by Sarah standards. A chance meeting with a member of staff from the day centre while we were in Asda the following evening shed some light on the bus problem, and please don't ask what we were doing in Asda on a Wednesday evening, it happens almost every week and deserves a post all to itself which may or may not materialise depending on the mood I'm in.

Apparently some pen pusher behind some desk somewhere has decided there cannot possibly be staff taking buses out from the day centre as early as 7:30am  and the new proclamation has been made saying 'Thou shalt not drive the minibus out of the gates of the day centre before 8:45am and if thou doest the wrath of god will fall upon thee followed by weeping, wailing, rending of garments and gnashing of teeth'

A little background information is probably required.. the annually contracted transport supplied by Rhondda Cynon Taff to take service users to and from the day centres across the area started well last September, new contractors seen by most as pretty good compared to the previous bunch of cowboys, bearing in mind the council always chooses the cheapest contract. Sadly the good start quickly degenerated into the usual erratic timing, bizarre routes and untrained escorts with little or no idea of what was expected of them. Several of the service users found all this more than a little upsetting and the day centre decided that they may as well use their own mini buses for those clients most affected by the contractors inconsistencies.

Because of the sheer size of the catchment area for the day centre, never mind the terrain and the remoteness of some communities, this means an early start to get everyone in by 9:00am. Nobody had a problem with this, staff hours adjusted accordingly and from my point of view things could not have been better. Round about 8:00am the bus would arrive and Sarah would be ready and waiting because she was going with people who she likes and trusts and who understand her need for routine and no surprises.

Everything was going so well and then this twerp sitting behind his desk on the other side of the mountain who has probably never visited the upper reaches of the Cynon Valley pokes his nose in and now we are in turmoil again. With no warning or time for preparation things have got to change, so not surprisingly Sarah's volatile volcanicity has gone ballistic. We have had a week and a half of weeping and wailing, only one garment got 'rended' but gnashing of the teeth has been evident accompanied by ear splitting screams and flying fists.. so far only one fist has landed, my deflection skills are well honed.  Nothing has been broken yet, which is pretty good going but the poor old dog is keeping a very low profile and has taken to slinking around corners very gingerly and hurrying across open spaces with ears and tail very low. Husband behaving in a similar way to dog, although his verbal skills are a great help. He can make Sarah laugh which gives us a few minutes to regroup ready for the next onslaught when she forgets what she is laughing about and gets back to the business of making her discomfort over the transport known to anybody within hearing distance.

We all know times are hard and services are being cut back, but this particular proclamation is not going to make any difference to the social services finances, all it is doing is causing disruption to staff, service users and carers alike by messing up schedules and time tables and confusing the hell out of anyone on or near the autistic spectrum. As this change coincides with the schools breaking up for the summer holiday that is the excuse I am using as reason the for the disruption which gives us six weeks grace in which time she will hopefully be used to a new routine.

It does effect the finances of a carer that I am aware of though. She lives alone with her daughter who has CP, is wheelchair bound and without speech. This lady has a job which starts at 9:00am, when her daughter was picked up 8:15am this was fine, plenty of time to catch a bus to work . Now her daughter is being picked up at 9:15am which means she cannot get to work much before 10:00am. She loses an hour in the morning and it looks as if her chances of keeping the job are further threatened by the uncertainty of the return home times. Didn't mention the change in coming home times did I, well Sarah used to get home at about 4:00pm, now it can be as early as 2:00pm but averaging at about 3:00pm. The proclamation also stated that buses must be back inside the day centre gates by 4:45pm.  This irritating little pen pusher has just increased my caring hours by eight hours a week, and has made it extremely difficult for another carer to carry on working.

I wonder how he would feel if a bigger pen pusher told him he'd had eight hours cut from his working week starting now with no consultation, after all, that is a whole days wage. Financially it makes no difference to me, I get the £55.55 a week carers allowance for the approximately 144 hours of care I now deliver per week to my daughter, with our income support duly reduced by that amount per week to make sure we don't creep to far above the poverty line.. I know my place.

The most important point I am struggling to make here is that these changes were made with no warning, no consultation and apparently no good reason.  Things have calmed down in our house now, but we have had at least ten days of upset and upheaval which could have been avoided if we had been given a decent amount of time to prepare Sarah for the imminent change and I'm sure that goes for other carers too, we have to make alternative arrangement for care if we cannot be in the right place at the right time, we need to know in advance if times are changing. The same goes for the staff at the day centre who are having to deal with multiple service users all in a state over routine changes and the uncertainties that go with it.  Most importantly the service users themselves have enough challenges in a day without having to worry about who will be on the bus, what time the bus will leave or arrive and who will be there to meet them, sudden changes may not bother your average administrator. but they have a profound effect on your average service user and that just isn't fair.  Awareness of the consequences of changes when you are dealing with service users must be paramount in the minds of administrators within social services, surely?

Thats it, rant over until the next time, 2:00pm is fast approaching and you can bet your life if I'm not prepared Sarah'll be home expecting everything to be in order and I still haven't located the album artwork for Amy Winehouse's (RIP) album 'Back to Black' which seems to have gone missing while I was uploading it to Sarah's iTunes and shuffle over the weekend. Everything has to be in order for her in iTunes and every track must have it's artwork, and if it doesn't there will be weeping and wailing, a rending of garments and a gnashing of teeth and I don't feel like dealing with that today....