Brian Wilson & Capacity

Even though Steven has been home for nearly two years now, I still get an emotional reaction when he suddenly tells me a story about his life during the year at the positive behaviour unit. The stories that choke me up often have the same theme: Steven trying to communicate something but being ignored.

I’ve written before how Steven has signature tunes or signature sayings for most people in his life. At the Mencap pool, he always greets Dave with a quick chorus of “Heartbeat”. One of the old cab drivers who used to take him to his water aerobics group would be serenaded with “I Will Do Anything For Love But I Won’t Do That”. I could give many examples of this type of communication.

This afternoon we were having a music session and I played “Sloop John B” by The Beach Boys. It turned out that whenever one of the male workers at the unit was on shift, Steven would greet him with: “I feel so broke up. I want to go home”. Steven calls this his “Brian Wilson singing to Keith” (names have been changed to protect the guilty!)

Of course, it had long been decided by the professionals that Steven lacked capacity to decide where he should live but as the IMCA pointed out, that doesn’t stop him having and expressing an opinion, or stating his wish. I’ve read the reports – if this sort of communication was acknowledged at all, which it rarely was, it was dismissed as an example of Steven’s “repetitive speech patterns”.

I’m pretty sure that the hundreds of logs I received logging Steven hitting out or throwing something, hid this kind of ignored communication. There was never any point in challenging it but I started to assume that at least some of the “incidents” must have followed times when he didn’t feel listened to. Needless to say, that sort of valuable information was never recorded in any of the reports.

It’s easier to play deaf.



Rocks and Hard Places

So, a quick update on the “ongoing discussions” about my housing benefit problem. The clock is ticking towards the 16th October and it still feels a million miles away from resolution.

I had the first of the meetings with the professionals: a social care manager; a housing benefit manager and a housing manager. They confirmed that the decision to end the housing benefit was correct on the grounds that although their regulations state that the capital from a second property can be disregarded in full if it is occupied by an incapacitated relative (it is – Steven’s mother has paranoid schizophrenia); the regulations do not classify a “wife” as a relative. They acknowledged that Steven cannot live in the marital home and I had a terrible Hobson’s choice back in 2009 – care for Steven or care for my wife, but they cannot “break the law by bending the regulations”. I did remind them about the court judgement from 2011 where Justice Jackson quoted a senior manager as saying (about the deprivation of liberty authorizations): ” we are acting legally on everyone’s behalf” and this situation had a familiar feel to it, but to no avail.

I was given two options:

1. Persuade my landlady to transfer the tenancy into Steven’s name. Even if she agrees to that, there are several difficulties. Firstly, they said Steven would have to undergo yet another mental capacity assessment to determine if he has the capacity to become a tenant. (We’re still waiting for the mental capacity assessment about whether he can manage finances before we get the damages claim). But far more threatening, they said that if Steven became the tenant, they would have to take his damages into account as capital available to him and that would disqualify him from housing benefit. So, that would put him in exactly the same position as me. One of the officers mentioned putting the money into trust for him (which is what I’m planning to do if we ever get the money) but another officer said they might still have to disqualify him because it could be argued that the capital had been deliberately disposed of in order to obtain benefit.

2. We move back to the marital home and try to force Steven’s mother to leave (or swap properties with her). That might work if, a, she was willing (she’s not) and, b, she had the capacity to make the decision (she hasn’t). And try selling a house with someone refusing to move!

Even though it goes against all the expert witnesses recommendations that it is overwhelmingly in Steven’s best interests to live in his own home with me and that any move would have a major negative effect on his well-being, mental state and behaviour, we also discussed Steven having to go into care if no resolution can be found. But of course, even though that is the last thing that both he or I would want, they would still treat him as if he was a tenant and still get back his damages by charging him.

I’d like to be able to work more and not have this terrible dependency. At the moment I work about 24 hours a week in my counselling practice. I could get a second job somewhere and solve the problem but I don’t have (and wouldn’t get) the support to care for Steven to enable me to do that.

Tricky, eh?



Sudden Endings

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?

U Turn Time?

What an astonishing two days. If I didn’t know what a head fuck was before today, I do now.

Yesterday, I was still despairing over the decision by Hillingdon to terminate our Housing Benefit with immediate effect. Then the angels stepped in:

On my five-minute walk from home to the bus stop, three angels appeared. Firstly, I bumped into one of our local councillor’s Wally Kennedy who was so supportive. Then I took a call from Anna Raccoon who has been there in our corner from the beginning and she agreed to write about the latest bombshell. Then, on the bus, Ben Conroy, our solicitor from last year phoned, having read my blog and said he would represent us immediately.

I had a gap at work around lunchtime and my old friend, Billy Kenber from The Times called and we did an interview over the phone. He promised the piece would go in today’s paper.

The response to my blog was phenomenal. In 24 hours, it had received 3180 views and all sorts of people were contacting me to offer advice. The great old gang from the Get Steven Home group turned out in force and I find their support really moving and inspirational. Good chats with my great friends, VJ and Ian also helped me clear my head.

This morning I was doing the early morning shop at Sainsburys and took a call from Radio London, inviting me on the Paul Ross and Gaby Roslin show at 8.40. They had interviewed me before, so I knew they would treat the matter fairly. Paul did a great introduction and got me to explain what happened on Wednesday. He quickly started to pursue the possibility that there may be a connection between the abrupt cessation of my claim and the recent award of damages. And then Linda Saunders, the director of social care and housing at Hillingdon came on. She said that she had personally intervened in the case this morning and had reinstated the HB whilst further discussions took place. I have been invited to a meeting on Tuesday to look at what options are available. It was an astonishing u turn in just two days. Paul came back to me for a response and I just said that I was gobsmacked but it was fantastic news.

What on earth have the last two days been about?


Pay Back Time?

Today I received the shattering news that the housing benefit we have relied on for the last three years to help towards the rent has been stopped by Hillingdon. Ironically, I was notified at a meeting I attended after applying for a discretionary housing payment as I have been really struggling to pay the rent since the rent cap was introduced. The guy admitted that the regulations haven’t changed and our circumstances haven’t changed but Hillingdon have decided to reinterpret the regulations. They now see our old marital home differently than they have for the past three years. Up until now, they have disregarded the property as not being available to me, as Steven’s mother still lives there and is unwilling to sell, and that it is in Steven’s best interests to be living away from there. Today, they say that they have to take half the value of the house into account as being available to me and that disqualifies me from any benefit.

So, from October 16th, Steven and I will be homeless. Or there’s a possibility that he won’t be but we won’t be able to live together. Steven could be offered a place under the independent living scheme with 24 hour live in support, possibly even the flat we’re currently living in, if I can get the landlord to agree to change the tenancy. But being family, I cannot be that live in support as my presence wouldn’t make it “independent”. As there is nowhere locally that I could afford to rent on my income, that seems to be the only option open to us, even though it is hardly in Steven’s best interests and goes against all the court recommendations. Obviously, the council don’t have any duty to rehouse me as a single man, and if I remain as the main applicant, Steven is only treated as a non dependent and his specific needs become irrelevant.

My friend and our solicitor reckons this is Hillingdon’s revenge. I don’t want to appear too paranoid but it is odd that after three years, their decision about the HB is suddenly completely reversed. In applying for the discretionary payment, I had to lay myself totally bare, so they would be fully aware that it is impossible for Steven and I to live together, anywhere in the borough, without the assistance of the benefit. I wouldn’t be able to work more hours to try to make up the shortfall because I don’t have the support to cover. In fact, after yesterday’s blog about the FACE assessment and the probable outcome of that, I would probably have to reduce my working hours. And the damages that Hillingdon were ordered by the court to pay Steven can be clawed back by Hillingdon from Steven if he becomes the tenant to cover his rent because he will fall into the same category as me as having “funds available”. It feels like 2010 all over again because whatever best interests argument I put, and heaven knows, I’ve got all those expert witness reports that state categorically that Steven should be in his own home with me, Hillingdon can just shrug their shoulders and fell back “on the regulations”.

Linda Saunders, our old friend from 2010, is not only director of adult social care but of housing as well, so I’ve considered appealing to her, whilst remembering that she authorised the “sorry” press release that sought to destroy Steven.

Under housing law, a council has no obligation to house someone if they deem you have made yourself “=intentionally homeless”; I don;t know that there is anything in law to cover the situation where the council intentionally makes you homeless. It feels like I’m in an old western movie and am being driven out-of-town!

I’m tired, very tired but it feels like a race against the clock to get something sorted for Steven before the 16th October. And then his life will really be in the lap of the gods, or in the lap of the Hillingdon gods. A friend just text me to say: “you’ve got to get away from this persecution”. I know it’s a strong word but that is exactly what this last two days feels like.

None The Wiser

Today was the day for the FACE assessment. I had been sent all the paperwork beforehand but it was so dense that I put it to one side about half way through and never got back to it again.

I like the social worker enormously. She is very straight forward and never uses that “I’m acting in Steven’s best interests” line. And the fact that she never says it demonstrates to me that she really is acting in his best interests. If only she had been on our case back in 2010, the whole sorry year would probably never have happened. But instead we were saddled with Mrs Narcissus and the rest, they say, is history.

The first five minutes were odd but cool. SW announced that the assessment as it stands doesn’t take into account the following: the need for extra support as a result of challenging behaviour; the need for respite; the need and provision of transport. The assessment tool is currently going through many adaptations and they hope to include these three requirements in future versions. I was gobsmacked. Those three things are Steven’s care package! Those three things are his only real needs but the FACE assessment doesn’t accommodate any of them. I say it was cool because at least it was up-front and I knew where I stood from the outset. I can’t express what a relief that was. None of this “promoting independence” and “facilitating choice” nonsense. The message didn’t sound very hopeful but at least it was clear.

What became obvious after about five minutes of questions was that this was an off the peg assessment tool, that is being used in the same state that it was bought. I would hazard a guess and say that if these tools come in several levels of complexity, this was probably the most basic, cheapest model. It was one of those “lets score everything from a value of 0-5” type of tests. And the same rating covers everything from managing money, wiping bottoms, chosing clothes to working the remote control. I’m hopeless at those sort of things; I try to look as if I’m giving each question deep, considered thought but my mind is really wandering off to Leeds’ chances of automatic promotion this year. An hour later, we’ve done as much as we can for today. Most of the questions weren’t applicable to Steven (I found the assessment tool was much more geared to the physically disabled than learning disabled) but it was a start. SW promised to write it up what we’ve done and then we can have another bash at it once the new versions are available (hopefully with questions that might reflect Steven’s actual needs).

She also prepared me for the outcome. Because so much of Steven’s care package isn’t recognised by the assessment, the RAS is likely going to throw out an inappropriately low indicative budget. At the moment his care package has three elements to it:

1. Provision of 2:1 support when Steven is out on an activity and 1:1 support at home whilst I’m at work and for early morning and evening bath.

2. 42 nights a year respite paid via direct payments so I can pay someone to stay overnight whilst I go out.

3. Transport to the activities that aren’t within walking distance and would require bus travel.

None of those three needs will be picked up by the RAS. But all is not lost. Whatever indicative budget is revealed, we can then go to the Panel to consider increasing the IB to include the specific needs. Exactly what happens at present but without the costly RAS system acting as the middle man.

There also tentative talk about how I’d like to receive the budget and once again, I kinda switched off but I think there are two options: I can have the whole lot on a pre-paid card or I can directly commission the services myself. At the moment, I don’t get involved in the payments to the support agency or the transport firm – I just get direct payments to cover one worker and the respite. So, it sounds like there could be an awful lot more work involved for me.

I left the civic centre and bumped into a friend. I gave her a blow-by-blow account of the proceedings and her response was: “You sound remarkably chipper over something that seems fraught with danger”. And she was right. And I’m sure it was because it was all dealt with so honestly, which was astonishingly refreshing. I may lose the 2:1 support, the respite and Steven will be stuck at home because the transport is cancelled, but I do know where I stand. Or perhaps I was still a bit pissed from my respite night last night.


What Colour Is Your Medal?

The Paralympics have been incredible. Two weeks of inspirational performances that have been an absolute joy to watch. We now have a new roll call of sporting heroes, who happen to be disabled.

And today, we have seen some new phrases doing the rounds: “The 2012 Legacy”; “The Bright New Dawn For The Disabled”; “Barriers Have Been Broken”; “An Enlightened World”. Anthemic and motivating language. And all in capital letters.

My only unease of the past fortnight has been trying to square what I have been watching on TV with my day-to-day experience of caring for a disabled adult and being part of the disabled world. I’m sure like a lot of parents and carers over the two weeks, I’ve had the fleeting thought: “Shall I sign Steven up for some javelin sessions?” But it is a fleeting thought.

So, will there be a bright new dawn for the young man in the wheelchair, I see regularly, being pushed round the precinct for the fourth time this week by the dis-interested support worker? What will the legacy be for my friend’s daughter who is now confined to her home six days a week because her day centre has been closed down? Will my other single parent friend who gets three hours a fortnight respite from her 24/7 caring be able to break down some new barriers? And when I go to my next meeting with social services to discuss indicative budgets and behaviour management plans, will I be stepping into a new enlightened world? I hope so, because these things are just as important as the wonderful David Weir’s medal haul.

This week I will be hard pressed to take Steven for his shot putt training. Tomorrow, I have to meet the social worker for a FACE assessment. The present care package is working very well but I fear that after we’ve been fed into a RAS, I may not be able to afford the archery coaching. On Wednesday I have to attend the Housing Benefit appeal meeting, just to try to preserve a roof over out heads. Come Friday, I will be taking Steven for his six monthly blood test to make sure that his medication isn’t fucking up his organs. And I’ve still got to try to fit in a mental capacity assessment with the GP to ascertain whether he has the capacity to manage his own finances. Until the test is done, he cannot receive the damages he was awarded back in July. I was reading Ellie Simmonds’ weekly training diary yesterday; her week feels very different to mine.

Yesterday did have an inspirational moment. The previous Sunday, our local Mencap Pool reopened after its summer break. The couple who run the pool had gone away for the weekend to visit friends, who incidentally we met when we went to Yarmouth in July. When Steven saw the couple yesterday, he went up and said: “Did you enjoy your holiday in Yarmouth, Jean?” Now, that’s quite an awesome moment. It’s pretty rare for Steven to start up a conversation with an enquiry about the other person’s well-being.

For Steven, it was quite possibly a gold medal moment.