I’ve been reflecting on the events of the last four days and trying to work out what the hell was it all about. In less than 48 hours, I swung from terrible despair and fear to triumphant relief and for what? If anyone from the social care field is reading this post, I would genuinely be interested in your theories of how things can change so dramatically, and so suddenly.
A thought struck me this afternoon – this isn’t the first time this happened. Not by a long chalk. So much so, that one might almost term it a pattern in my dealings with Hillingdon council. We’ll be plodding along and then all of sudden, whoomph, something important to Steven’s support system is withdrawn with immediate effect.
Here are five occasions in the past two years:
1. March 2010. Steven had been at the positive behaviour unit for three months. Late one Friday afternoon I received a call from Steven’s social worker, informing me that they had implemented a change that would have an immediate impact. They were withdrawing Steven’s direct payment package. The next payment was due to go into the account the following Monday morning and I was given 1 working day’s notice that it has stopped. The consequences could have been dire. At the time, our direct payment worker who had worked with Steven for 5 years was working about 30 hours per week. He was a vital cog in Steven’s life, especially stabilising as a familiar face whilst Steven was struggling to cope with all the changes brought about by the move to the positive behaviour unit. If Hillingdon had got their way, the direct payment worker would have had to be immediately laid off and Steven would have been stuck for his activities on the MOnday morning. As it happened, I had a bit of spare money in the direct payment account to continue paying him for a further two weeks. I also, used the money I had put aside to pay the DP tax bill to cover his wages for another two weeks after that. Because he is a loyal man with great integrity, he then did a further two weeks voluntarily. One day, about four weeks after the social worker phoned me, she arrived at my flat unexpectedly just as I was paying his wages. “What’s HE doing here?” she said. When I explained, I could see that she was cross and confused that it was inconceivable to her that someone might continue to work unpaid out of loyalty and a strong work ethic. It took six weeks to resolve the issue but eventually the direct payments were reinstated and backdated to the day they had suddenly stopped. No explanation. No Apology.
2. April 2010. I’ve written about this many times but the day after Steven made his first escape from the positive behaviour unit, all his daily activities were cancelled with immediate effect, pending risk assessments on all the venues. He was really distressed by this and obviously, couldn’t understand why he was being punished in this way. I don’t blame him; I didn’t understand it either. It took three and a half months for his community programme to be reinstated. They could only carry out one risk assessment a fortnight but ultimately, when the programme was back in place nothing had changed – he was doing exactly the same things at the same places as he had 14 weeks previously.
3. March 2011 and a week before Steven’s 21st birthday. Yet again it was a Friday and I was called urgently to a meeting with the social worker to be told they were cancelling the contract withe agency that provides the bulk of Steven’s support immediately. It was all very vague with mutterings about “employment irregularities” and “possible immigration issues”. This hadn’t arisen from a council investigation but from an anonymous tip-off! I contacted Steven’s barrister (we were mid trials don’t forget at this time) who was an immigration expert and she arranged to see all the workers and the managers at her chambers on the Monday morning. Needless to say, all the papers were in order but it was three weeks before the council reinstated the contract. No explanation. No apology. I had to take three weeks off work as I only had our direct payment worker to cover. The guys were great though and made sure that Steven’s birthday plans weren’t ruined by working for as much I could get together to pay them out of my pocket. And three weeks after the contract was abruptly cancelled, everything was back in place exactly as it had been before.
4. February 2012 and the saga of the respite package. Hillingdon had spent over a year on different programmes trying to get Steven to return to the centre he used to go to for respite and the same place that he was whipped away from after one night and taken to the positive behaviour unit. These programmes included: desensitising therapy games; subliminal messaging; social story books. None of them worked because he was dead against going back there. For ten months I did without any respite at all and then they agreed to fund a support worker staying overnight at our flat once a fortnight. This worked a treat but then all of a sudden I was notified, guess when, on a Friday, that the respite was being stopped straightaway. I had arranged a night out with a friend for the Saturday which I had to cancel. Three weeks later and after some intervention from my solicitor the respite was back. For over a year I had been proposing a very cheap respite option and each time it was rejected. Now, all of a sudden it was agreed and respite was back on. No explanation. No Apology. Some of you may remember that this story had a sting in the tail. The week I was due the first direct payment to cover the respite, Hillingdon suddenly deducted a backdated charge for Steven’s care from the payment leaving me with 16p to fund the respite. Again it took another solicitor’s letter and they admitted the charge was in error and refunded what they had deducted in error.
5. September 2012 and the sudden cancellation of our Housing benefit only for it to be reinstated 48 hours later, during a radio phone in programme!
I’m often challenged by council officers about trust issues. There are several of them that I totally trust and there are lots that I wouldn’t trust as far as I could throw them (as Middlesex county boy’s discus silver medalist 1976, I could probably throw the shorter ones quite a distance). What I find almost impossible to trust is that this kind of thing won’t happen again. It’s happened five times now and the consequences have been awful. I don’t want to suggest that the intention was to destabilise but that was the outcome of each of these sudden withdrawals. Thankfully, I know Steven well and have excellent support workers, so any destabilising was kept to a minimum.
What I’d like to know is, is this pretty common practice across the country or have I just been unlucky?