Dad Can Go
There’s a massive change happening in the Cowley house. Although it is being driven by Steven, like any change, good or bad, it is making him very unsettled. This change has all the hallmarks of being very positive, although it’s exposition is like crossing a minefield.
Since Steven moved into his new house in October, he is wanting me around less and less. He has fully embraced the idea that it is his house and moves around it with total authority. He constructs his day and is intolerant to any external suggestion to do things differently. A lot of the old routines have gone out of the window.
I guess it started in those three weeks before the move when I had to spend most of the time at the new house making it habitable. Most of the things Steven and I do together had to be handed over to the support workers. Steven found this initially difficult and the outcome has been that some things have been dropped forever. Whilst others have formed a new routine that doesn’t include me.
Take Tuesdays. Prior to the move, Steven followed the same routine for years. Upon his return from his water aerobics group around midday, me and Steven would prepare a C90 tape in preparation for his Wednesday morning disco. Then we would watch an episode of Gladiators together. The support worker would return from 3pm to 6pm whilst I did the personal budget admin and then from 6pm, Steven would do a two hour music DVD session, calling on me to cue up the tracks. All that has changed. Steven now does the tape with Des. “Dad can go to his room”. Then instead of Gladiators, Steven chooses a video and insists he watches it on his own. “Dad can go to his counselling work house”. “Alan can go to the kitchen”.
As I said, this is all good from an independence perspective.
So, what’s the problem? As much as Steven loves his new home, I don’t like it. It’s partly because I’m worn down by the damp, the boiler and all the other things wrong with the place that he doesn’t really notice. It’s also because I get bored spending most of the day in my bedroom. I start to feel a bit claustrophobic. And I’ve got that bloody allergy to the carpet still. I’m wearing my trainers or slippers all the time but the other night I got up for a pee and forgot to put them on and by the next day my feet were red raw again. It’s also very symbolic.
The other problem with “Dad can go to his counselling work house” is that I have to pay the support worker to cover my absence. That’s £30 from 6pm to 9pm and £65 for the Nightshift. This isn’t covered by the personal budget, so I have to find £95 myself. I can’t sustain that.
Back in 2011/12 when I had to attend monthly meetings with the council, their first question would always be, “When do you see the time when Steven will be living independently from you?” I always knew that their hidden agenda was to move Steven to one of their 20 unit supported living flats with pooled budgets and minimum staff. But I could never answer the question because I always felt it should be driven by Steven. When he was ready, it would happen.
The life Steven has now is very different to the LA’s idea of independence. It is genuine independence. It’s not a cloak to hide saving money and warehousing people. Heaven forbid, Steven’s life is what a non learning disabled person might choose for their independence. But for him to push it one stage further and have Dad at his counselling work house most of the week, will expose the kings new clothes of the council’s “independence” policy. Will they joyfully increase his budget by £95 per week so he can achieve the independence he is striving for? Or will it rekindle the real agenda of the supported living studio flats?
Whatever happens, it will be another battle.
From → Social Care