A Delightful Log

Here’s a sentence that I never expected to write – I love Steven’s daily reporting log. Note the singular “log”, not “logs”. Since that liberating meeting last September when we managed to extricate ourselves from those awful arse covering, tick box forms we had to complete for social services, we have just had one A4 book. There is no set format to it; it’s more like a diary than a log, so it allows the support staff to express themselves in their own individual way. And that’s what is so brilliant about it – the log perfectly reflects the unique relationships that Steven has with each of the workers. None of that nonsense like we had with the speach and language therapist who instructed us all to never use more than four words in a sentence with Steven and to stretch each vowel out like a piece of plasticine. It could never work. How do you answer the question: “Dad, what was Take That’s 10th song called?”. Answer – “It was Take That and LoooooooLooooooo singing Relight My Fire, Steve”. It doesn’t fit. And we’re not robots.

The main reason for keeping a log at all is to have a record to produce to the CQC upon inspection. And I would hope that the CQC would find the record interesting and admire the ability of the staff to form meaningful, individual relationships wqith Steven. The staff read the log at the start of their shift but we tend to rely on verbal communication during a handover. I know that I get told the important news by the workers or Steven, so I read the log for entertainment.

We have five support workers in the team; five very different men, each with their own way of relating. I am very fond of all of them and know that Steven’s life would be less fulfilling if they weren’t around. I’ve shown them this blog post and they know it is written with deep affection. For this post, I’ll call them Gary, Mark, Jason, Howard and Robbie.

Gary is Steven’s longest serving support worker and still carries some of the scars of trying to support Steven during his year at the positive behaviour unit. He still gets anxious about his work being scrutinised unfavourably, even though I think he is great. His entries in the log go into minute detail, almost bordering on the pedantic: “At 7.53am, Steven had a moment of anxiety and thumped the arm of the sofa”. “At 7.57am, he was calmer and ate a pear”. He writes pages and pages and the reader tends to give up halfway through but I love the attention to detail.

Mark has a lot of experience working in care homes and writes formally, focusing almost solely on behaviour: “Steven interacted positively with other service users at the pool”. It’s interesting because this isn’t how he interacts with Steven; they have great laughs together and he’s very chilled but I guess he’s used to that institutionalised way of writing.

Jason is a man of few words and so are his log entries. If you get more than three sentences from him, he’s being verbose. He is the strong silent member of the team who Steven tends to rely on for help with tasks. His logs reflect this: “Changed sheets. Did washing. Cut Steven’s hair”.

Howard is newer and has bonded well with Steven over music. Subsequently all his log entries have a musical reference in them: “Steven enjoyed his time in the steam room where we sang Adam Ant songs”; “We played an M People CD whilst making cheese on toast”.

Robbie is great and writes in rather exagerated, almost theatrical language: “Steven had a delightful time at the Mencap Pool”. “His mood was jolly as he chatted with his friends”. I could read this stuff all day; it’s like our life is chronicled by Enid Blyton.

Aren’t they great. And what we sometimes do is read them back to Steven and he gets dead excited by hearing the narrative of his day. We could never have done that with the old START recording forms.

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Turning A Deaf Ear

It’s been over five months since I was informed that the LA were stopping my housing benefit, and by God, has it been a long five months. The lack of activity and the awful feeling of being trapped and powerless has been doing my head in.

Last week I received the sealed court order appointing me as Steven’s property and affairs deputy. The order is very clear that if I have a conflict of interests over any decision for Steven, an IMCA needs to be appointed or the court has to make the decision. Hillingdon’s prefered plan is that I transfer the tenancy into Steven’s name and he uses his damages award to meet the rental liability. As I have an obvious conflict of interests with this plan, any decision has to be a best interests decision for Steven. I have asked Hillingdon repeatedly for an IMCA referal but they are again doing what Justice Jackson criticised them for – turning a deaf ear. I haven’t even had my requests acknowledged; let alone acted on. Sorry for sounding like a cracked record but the sooner people can contact the IMCA service directly and not have to rely on an LA referal, the better. I’ve tried to kick start the best interests process. As the deputy, and presumably the RPR, I’ve contributed my own best interests assessment, but like the request for and IMCA, that has been ignored too.

Hillingdon have neatly stitched up relations with my landlady. They insisted they had to contact her to inform her about the change in rent payments and since then, she’s adopted the deaf ear approach too. I can guess what is happening. Having got wind of us probably being evicted, the landlady is hoping to hold on to our deposit when we go and use our money, rather than her own to carry out the repairs in readiness for the next tenant. So, at the moment, we have a dangerous temporary wiring in the fuse box; a leaky radiator causing horrible damage to the flat downstairs; broken floor tiles in the bathroom that we keep cutting our feet on; a broken bed; a broken sofa and a boiler that alarmingly keeps flashing its warning light. I wish this council were as keen to risk assess the property as they are to risk assess Steven.

I’d love to move. I am quite comfortable that a move would be in Steven’s best interests and would give him long term security. I’m comfortable using some of his damages to enable him to have this security. Ah – the damages! 19 months on, we’re still waiting for them. The latest news is that, despite two court orders about costs, the solicitor wants to double – check with the Legal Services Commission in case any costs need to be deducted from the award. I’ve actually got to the point where I don’t believe Steven will ever get his damages award.

I’ve written before about systems and being caught up in so many systems is exhausting. If I’m truly honest, I haven’t met one system that can honestly say they are acting in the best interests of the person they are serving. I’ve had a lot of faith in the legal system but the latest delay in releasing the damages is extremely disappointing. I’ve asked several times for a tiny proportion of them so that I can buy Steven a new bed but am told sympathetically that there is a process to go through.

Processes. Systems. Best interests. For whom?

The Public Ear & The State Eye

I read two interesting things yesterday that led me to reflect on my relationship with social media and the wider media. The first was a tweet from @sarsiobhan that she had received a negative comment on her blog. The comment was critical of her writing about her son and bringing his life into the public domain. The second was a discussion at @SWCmedia on exactly the same topic; is it right for family members to write about their vulnerable children, particularly on the internet? The general view was that it was not a good thing and seldom in the vulnerable person’s best interests and the lack of control of how the material is received could put the person at risk. Familiar concepts in the social care world: control, best interests and risk. So much social care discourse and actions are framed in these terms and the drive to avoid risk often wins the day.

In my case, I brought Steven’s situation in 2010 to the media out of sheer desperation. After six months of having his access to justice blocked by Hillingdon council, he needed more help than I could give him to secure his release from the deprivation of his liberty. I was confident that I could shield him from any negative attention; I wasn’t totally sure of course but it seemed worth the risk. And it worked. It was through the Facebook campaign and Twitter connections that we eventually got legal representation. And I was able to gain valuable knowledge about DoLs that had been denied me by the supervisory body. In the court judgement, the team manager is quoted as saying that the media attention did push Hillingdon to reflect on their decision-making; albeit that it didn’t change anything. I don’t think it’s an exaggeration to say that without social media and the involvement of the press, Steven would today be languishing in a hospital in Wales. Facing a life in care that does not want or does not need.

That was then. What about now? Since the court case, the Get Steven Home group continues to be a vibrant group and the pool of knowledge there helps an awful lot of people. It’s very difficult to get appropriate help; have your voice heard when you’re in the sort of threatening situations that the social care world throws up. People come into the group on a daily basis with harrowing stories of powerlessness and are caught up in horrendous battles with the authorities. This isn’t a Jeremy Kyle culture of washing dirty linen in public (as someone put it on SWCmedia last night). This is about despair and survival. Following 2010, I wrote the book and that certainly involved more disclosure than had been in the public domain up to that point. From the feedback I’ve received, I know that the book is on the reading list on several professional courses, so that can only be a good thing. And I write this blog; partly because I love writing but also because I believe there are important stories still to tell. I see my blog as similar to Sara Ryan’s in that they are both about the narrative of trying to lead a “normal” family life whilst being entrapped in systems that claim to be about support. I also believe that both Sara and I write with a great deal of love and humour and a deep understanding of the people we care for that nor professional could ever have. I like to think in our writing, Steven and LB come alive and their wit, humanness and struggles come across. Compare my writing about Steven with the press release that Hillingdon issued on the eve of the court case and then argue about who has his best interests at heart and which could cause him most harm.

I’m always uneasy by the opinion that the professional’s view of best interests carries more weight that the families’ view because the professional is able to take a more detached position. Whilst they won’t have the same emotional investment as the family; they are hardly entering the arena with a completely clean agenda. They may be detached from the person but I doubt they can be detached from all the other agendas (money, resources, local politics) that come into play. I often find that professionals will imagine worst case scenarios and build their position from that. Understandable perhaps but no way to live a fulfilling life because the position will be not to do something rather than do something and try to minimise the risks involved.

In an evidence reliant world, the evidence in our case reveals that there has been absolutely no adverse impact on Steven that we have encountered from the media attention or from my writing about our story. I say, “we have encountered” because there may be some saddo having a wank over a picture of me on the steps of the High Court but I can’t get too worked up about it if I don’t know about it. Steven will occasionally ask to see the BBC news footage but to him, they are part of his video collection alongside his school plays and the person centred plan footage of him at the gym. Steven remembers the names of the journalists and they’ve been added to his portfolio of lookalikes. And every now and then a member of the public recognises him, introduces themself and congratulates him. Which makes him very happy. That’s it. No doorstepping. No hostile public reaction. No nasty anonymous letters. I haven’t dropped my protectiveness but in three years there have been no unwanted attention for Steven to deal with.

Last week, I spoke at a BIA conference and I had a few random negative thoughts beforehand: “should I put the story to bed now?”, “Does it benefit Steven from me attending these events?”, “Does telling the story serve any useful purpose?”. The response I received was incredible. People were moved. People said they were inspired. But perhaps most importantly, a number of delegates told me that our case had prompted them to examine their practice. That must be a good thing.

Not everyone, even in 2013, is an X Factor wannabe. If your priorities are right; if your heart is in the right place; if you explore your unconscious motives; if you are confident of protecting your vulnerable relative, it is important to tell your story and for your story to be heard,

Sometimes we have to stand up and be counted.

You’re My Favourite Deputy

At last. I’ve received the paperwork from the Court of Protection informing me that I have been officially appointed as Steven’s property and affairs deputy. No sealed order yet and no damages award yet; they have to wait until I put up a surety in case I abscond to Barbados with the proceeds of Steven’s compensation. Will I be able to take him on holiday for his birthday in March? Will he eventually get his new bed by the spring? Who knows but for the first time since Justice Jackson’s ruling in June 2011, it feels like we’re moving in the right direction.

In the past couple of months, I’ve been on my soapbox in the blog posts “Straight From The Gut” about what I see as the flaws in the mental capacity assessment. In particular, I have questioned their almost sole reliance on cognitive decision-making and paying scant attention to the way that most people make their decisions by referring to their gut instinct, feelings or previous experience. And for people with communication difficulties, even if they are able to make a purely cognitive decision, they may struggle to communicate how they did it. I watched Steven the other day after I’d told him about a change to our routine next Friday. There was a lot of mental activity going on and from his response, I had correctly guessed that he was doing three things:

  • Absorbing the information I had given him.
  • Working out how the change would impact on him.
  • Deciding what alternative plan he’d like in place.

Basically, it was about me doing the weekly shop next Thursday evening instead of next Friday morning as I need to get up to London by 10am on the Friday. There were two aspects of this that would impact Steven: would he get his cheese on toast that we make together when I get back from Sainsburys and would he get to watch his Men Behaving Badly DVD that I cue up for him before I go shopping? It took  him about 10 minutes before he said: “Have cheese on toast for supper on Thursday night”, followed by, “Dad do Men Behaving Badly and then go on the train on Friday”. Brilliant, but if he had to explain how he’d reached these conclusions, he’d struggle.

Whilst reading through the CoP paperwork, it struck me that I may have had an un-necessary bee in my bonnet; certainly in terms of the mental capacity act. The guidance I’ve received about assessing decision-making capacity states that: “people have the right to make unwise decisions”; “people have the right to make wrong decisions”, and “consider any values, views, beliefs, wishes and feelings they may have expressed”. I was shocked on reading this as it hasn’t been my experience of Steven’s previous assessments. In 2010, social services had decided what the “right” decision was, about where Steven should live. The very matey referral letter (“How’s the family? We must meet up for lunch sometime”) from the social work manager to the assessing psychiatrist hardly opened the field for him considering anything other than the “right” decision. What chance did Steven have to present an alternative view under these conditions? Where was the consideration of Steven’s values, views, wishes and feelings?

So, perhaps the problem is not with the ACT as I’d thought but with the way in which it has been implemented by some of the professionals. Perhaps the Act offers the scope for the learning disabled that I’ve been calling for. Perhaps the problem is with the risk averse system, or the pig-headed “we know best” system. Remember the Cardiff case about the elderly lady who wanted to go on her annual cruise with her partner. The LA thought this was an unwise decision, too risky and subsequently slapped a deprivation of liberty order on her. A judge lifted the order and off she went. I never read any news reports of her falling overboard, so presumably the holiday went well. None of the stress or costly court hearing needed to happen if the code of practice had been applied fairly. I find it terrifying that I might, in the future, have my fundamental life decisions made by people who won’t allow me, out of risk or through an absolute certainty of their rightness, the grace of using my feelings, my instinct or my previous experience to choose how I live my life.

There are several references in the code of practice to appointing an IMCA when there are difficulties. And we all know how difficult it is to get an IMCA if the LA don’t want you to have one. If the decision maker believes their decision is the absolute right decision, they are not going to very open to having a second opinion. This is a massive challenge for people in the field and for people who come under the Act. Can you listen to; understand; and not discriminate against the learning disabled person when there are decisions about their life to be made.

One other thing that came out of reading about my responsibilities as a deputy is the code of practice confirms my thoughts about the conflict of interests in the decision I’m being forced to make over my housing benefit. Regular readers of this blog will know that Hillingdon want me to transfer my tenancy into Steven’s name and then he’ll have to meet the rental liability out of his damages. The code clearly identifies this as a conflict of interests and the solution is to either appoint an IMCA or take the matter to the Court of Protection. With Hillingdon, it feels like I’m in an interminable chess match, so I’ve written to them asking them to make an IMCA referral. And what will the court make of Hillingdon bringing about this conflict of interests? Should be interesting.

I had to sign a court form, confirming that I’d explained my deputy role to Steven. His reaction? – “Dad’s a deputy like Woody in Toy Story”. As much as I like Pixar’s cowboy, I’d prefer to be known as Steven’s property and affairs space ranger. After all, since I got on the wrong side of them, I see my battles with Hillingdon continuing to infinity and beyond.

Olivia Newton John & Positive Behaviour

Amongst Steven’s Christmas present wish list was “a Olivia Newton John CD with all the songs on”. So, I duly brought her greatest hits and this afternoon Steven wanted to play it through for the first time. He has been humming a song for a few days and trying to get me to name it but it drew a blank with me.

So, we arrive at “Take Me Home – Country Roads” and he gets all excited and tells me that this was another song he used to sing to the staff at the positive behaviour unit as a way of trying to convey the message that he wanted to “come home to the Uxbridge house”.

It made me realise again that Steven must have had a whole playlist of songs that he would break into at the positive behaviour unit, in an attempt to be heard. Anyone who knows Steven knows that he communicates best through song and that our daily conversation can get quite operatic at times. It doesn’t take a genius to register that is how he likes to communicate and to try to understand the message of the song.

Another area for the mental capacity assessment to be extended to cover all aspects of communicating perhaps?

A Narrow View of “Family”

Hillingdon Council sent me a lovely happy new year present the other day – their submission to the Social Security First Tier Tribunal. Hopefully, not setting the tone for my 2013, it comprised 80 odd pages, that took ages to read through and absorb.

I’m not going to go into detail again about why they cancelled my housing benefit as I’ve blogged about it elsewhere but basically they decided after four years of awarding it to me, that a month after Steven’s damages were awarded by the court, they needed to review my claim and came to the decision that the house where my wife lives should be taken into account as capital available to me. Nothing has changed since July 2009 when Hillingdon told me that if I didn’t move out of the marital home, they would issue a safeguarding alert on Steven as his mother’s mental health state was having an adverse effect on him and the sustainability of the care package. Included in the council’s own evidence bundle is a letter from the social worker at the time (“There’s always something or other……”) supporting the move. Nothing has changed between August 2009 and November 2012, except the way Hillingdon are viewing the second property issue.

One thing that has struck me reading their submission is how out of touch the benefits regulations are with the real experiences of the adult learning disabled and their families. As well as the obvious legal argument that my solicitor has submitted (basically that they have misinterpreted or misdirected themselves), we have also made submissions under the Equalities Act. In my case, there are three people involved in the story: me, my autistic adult son (who lives with me) and my incapacitated wife (who lives in the old marital home).

The HB regulations say that a second property can be disregarded if “it is occupied by an incapacitated partner or incapacitated relative of Mr Neary”. They argue my wife is not my “partner” as we live apart and she is not a relative because a wife/husband/spouse is not included in the list of “defined relatives”. My sister’s partner counts as a relative, so does an uncle but not a marital partner. Strange!

Next step, the HB regulations state the second property can be disregarded if “it is occupied by an incapacitated relative of a member of Mr Neary’s family. So, my wife is a relative of my son but Steven doesn’t count as a member of my family (He would have counted in the previous list alongside uncles and sister’s partners!). And the only criteria for discounting him as a member of my family is that he is financially independent of me. That is of course true but to differing degrees in every other aspect of his life, he is dependent on me. And will be as long as I continue to be his carer. That seems quite discriminatory to me – no acknowledgement of the special circumstances of a learning disabled adult living in the family home.

If any legal people are reading this, is there a possible CRPD issue going on here?

So, that’s that. At least 14 weeks to wait before the appeal is heard and little chance of success if the judge sticks to these very narrow definitions and views of “family”.