Is There A Decoder In The House?

Well, blow me down with a feather.

Every time I write a Committee Room Five story, I pause before pressing “publish” and consider if I’ve gone way over the top. But usually, within 24 hours a story will come along that shows that Deidre Trussell and her Newport Pagnellshire gang are just small fry in the real world.

Tomorrow is the day the Government closes the Independent Living Fund. They have always maintained it is not a cost cutting exercise as the money has been passed on to Local Authorities to administer.

A couple of weeks ago, Disability Rights UK published the results of their FOI requests to Local Authorities where they asked the question whether they would be ringfencing the ILF money. 106 LAs responded. Several admitted they were still undecided! Only 29 stated that they would be ringfencing. One of those 29 was Hillingdon. Being a Hillingdon resident, it felt good and reassuring, even though Steven has never received money from the ILF. It looked like they were doing the decent thing.

This morning, Victoria Derbyshire ran a piece on the ILF closure and presented the stories of two people for whom their ILF money currently gives them a fulfilling life. One of them, Mary, lives in Hillingdon. After talking through Mary’s fears, the reporter read out the following statement from Hillingdon:

“We are committed to meeting the care needs of adults in the borough who are eligible for support. Until Mary’s new package is in place, she will continue to receive the same level of support”.

Now, is it me, or does that statement need some serious decoding?

The first sentence doesn’t need any attention at all. It is such a standard, bland cliche that it is totally meaningless. It also states the obvious in a way that makes it look like they are being benevolent. Or going beyond the call of duty. Meeting care needs is their job. That is what they are paid to do. You don’t hear milkmen saying, ” I am committed to delivering the milk” do you.

It is the second half of the statement that sets off an orchestra of warning klaxons. It clearly implies that Mary keeping her ILF is only temporary. Until her care needs are reassessed. Why do they need to be reassessed? The only thing that has changed is the transfer of bureaucracy – nothing to do with Mary’s needs. And if they are committed to ringfencing the ILF money, why do they need to insert that clause. A clause that says nothing definite but is bound to generate anxiety.

I’ve tried to decode it but its made my brain weep.

Does anyone else want to have a bash?

Update 30th June.

There has been a lot of discussion on Twitter and I realise I was wrong to dismiss the first sentence as not needing attention. Several people have a hand in writing these statements and I fell into the trap they set. I missed the clause at the end of the sentence – “who are eligible for support”. As the LA sets its own elibility criteria it is a bar that is frequently raised as the ethical and moral bar drops. So, the ” commitment is only there as long as the eligibility criteria is met. Mary may have needs but they have to be the LAs predetermined needs for it to mean anything.

I’m a novice at this decoding business.


A Heartfelt Apology From Committee Room 5

Urgent Press Release

This week, the council were involved in a High Court case (at much expense to hard working local taxpayers) where a small number of embittered disabled people decided (in their wisdom!) to challenge your committed local authority over a commissioning decision. The case has been reported as “1280 Ps vs Newport Pagnellshire County council”. The council did put forward the case that it was not in the best interests of the 1280 litigants for the case to be in the public domain but the Judge (in her wisdom!) held that there might be a smidgen of interest in her findings.

The case centred on the councils’ well intentioned scheme of relocating 1280 learning disabled residents to Gravesend. New South Wales. Every single one of the 1280 people had their own individual person centred plan, so there was never any suggestion, as their barrister claimed (in his wisdom!) of ” warehousing”. The council always acted in each person’s best interests and remains committed to putting these people at the heart of its decision making process. The judge found that 1280 unlawful deprivations of liberty had occurred as well as several human rights violations. Or as the Judge pithily put it: “It might be quicker to list which articles haven’t been breached”. The council accepts these findings, although we want to be absolutely clear that any minor failings were peripheral to the adequate quality care that the Judge found in 7 of the cases.

This council wishes to put on record that the decision to place 1280 people in a sun drenched assessment and treatment unit was never driven by financial motives. We repeat, never, ever, ever was money involved in our care planning. Block booking of beds, reduction in social work caseloads, savings in personal budget’s, commissioners bonuses were never a factor as the Official Solicitor (for some reason!) claimed. Scurrilously. When the council introduced its innovative carrier pigeon scheme to enable contact with families, it never once considered efficiency savings. Likewise, the council’s partnership contract with Gravesend Pharmaceuticals is neither here nor there and the fact that 1278 people are now on an anti psychotic regime is seen by this council as a healthy therapeutic intervention programme for, let’s face it, a bunch of people you wouldn’t want living next door to you.

As the Judge acknowledged it will be impossible to relocate all 1280 people (with challenging behaviour) back to the UK immediately. This is not because the council has dismantled all of its support services but is a best interest decision on behalf of each one of our valuable stakeholders. Whilst the provider has pulled out of the deal we are pleased to announce that we have secured a holding arrangement with the Wombat & Kangaroo Rehabilitation Sanctuary who, as we speak, are converting 1280 cages into welcoming independent living flatlettes. In the meantime, the council will commence work on an equitable 30 year transition back to England plan. I hope that reassures the families who we remain committed to involving in every step of our plans.

We now feel that it is time to put this miniscule blot on our social care history behind us, learn any lessons that need to be learned and drive forward our service in equitable and integrated ways that are the envy of the entire country.


I’ve been involved in a couple of debates this week about how the parents of learning disabled people can often oppress them. Of course it happens but I get frustrated sometimes that in amongst the well meant call for independence, there is often a skewed understanding of family life. Sara Ryan coined a brilliant description of this – “prolonged parental intensity”. The parent is long involved in day to day involvement that simply wouldn’t happen in a neuro typical family.

This week a client was talking about her void now that her youngest daughter has flown the nest. Later, I thought about our situation. Steven is the tenant of the home we live in, so if anyone will be flying the nest, it would be me. But if it was the other way round, the alternative nest options for Steven are pretty grim. The nests available to him are nowhere near as wide or attractive as those open to my client’s daughter. When people fly the nest it is usually with an aim of expansion. Sadly, for lots of learning disabled people it is marked by contraction and loss.

So family life continues and I wish sometimes the realities of that would be recognised more and judged less. Decisions are made including the whole family and there are winners and losers each time. Here are a couple from the past week. There are probably several ways they could have been handled but that’s not the point.

On Mondays, Steven goes to the Arts Centre. The usual plan is that I go off early to buy the snacks and open up the Centre and Steven & his two support workers set off about 9.30. Once they arrive, I head off back home to do the hoovering. This week, I was at the Centre awaiting their arrival and at 9.15, the second support worker phoned me to say he was stuck on a train and it would be at least 10am before he arrived. He assumed that everything would just be put back an hour. There were two problems with that. Firstly, the room is only booked until 11.45 and then other people use it. Secondly, expecting to be at home, I’d booked a telephone assessment with a new client at 10.45. I’d now be doing a potentially emotional interview for the client slap bang when Steven & the staff arrive. So, do I meet my needs and cancel Steven’s trip out or do I meet Steven’s needs and cancel the assessment and try and find another room for Steven’s session. In this instance, I chose the former and Steven lost out.

Two days later, a similar thing happened. We needed someone at home to let the housing manager in for her 3 monthly inspection. Does Steven have to forego his gym session or do I cancel two hours at work? Although, cancelling the work could be seen as unprofessional and letting the clients down, and it cost me £60, that is what I chose to do and Steven got his gym session.

The point of these stories are that they are daily occurances and will continue to be because of the prolonged parental intensity. Decisions are made and plans are made that try to accommodate everyone’s needs. Most of the time it can work, sometimes one of us loses out. Dare I say it, sometimes, someone’s best interests can’t be met.

I can’t see how it can work any other way.

You Scratch My Back

An interesting article appeared in the Huffington Post yesterday. It was written by the Campaigns Director of Change.orgUK, the online petition site. The piece presented itself as a celebration of a number of learning disability cases. They were ATU cases were the people have managed to escape their confinement to a better life. Real people, who have been through hell. But really, the piece was a massive plug for Change.orgUK, in each of the cases, claiming how the online petition played a major part in the happy outcome.

What the Campaigns Director couldn’t have foreseen was that the timing of this PR stunt was rather unfortunate. One of their cases they used was Stephen, a young man with autism who recently moved from a long stay in St Andrews hospital to a similar unit in Clacton. Or as the article put it, “Stephen moved to a better hospital”. On the same day, Stephen’s family revealed that Stephen had just been assaulted for the third time in two weeks in this ” better hospital” and that a police and safeguarding investigation is under way. Sadly, Stephen’s hell is far from over.

Bizarrely, the article also referenced Mencap. Talking about the situation of learning disabled people in ATUs, the article states: ” Former Care Minister, Norman Lamb picked up the cause with Mencap & a Green Paper is being put to Parliament, to propose reforms that could benefit scores more families”. (Presumably like Stephens’).

Is that how it was? Did Mencap have such a big part to play in the No Rights Ignored paper? Or is this Mencap shamelessly boosting their profile again?

I’m sorry. I’m probably being unfair. I’m just struck by the regularity in which Mencap and the CBF make statements, claiming to have played a key part in a successful outcome for a learning disabled person. My experience of their input back in 2010 was very different. Well, at least until the High Court judgement, when they had plenty to say on the matter.

But perhaps that how the game works and we just have to go along with it. In 2011, I was approached by the company Steven’s IMCA worked for. They asked me if I was willing to tell Steven’s story to camera for a promotional film they were doing. I was a bit uneasy but as Cilla the IMCA is one of the people I credit with saving Steven’s life, I was happy to oblige. It was only later on that I realized that Cilla had changed jobs and I was doing a film for her new employers. They hadn’t been involved in our case at all. I’m not knocking Cilla. I’m not sure she even knew about the film! The new company had jumped on her “success” and were using her and me to up their profile. It was all very embarrassing.

I guess that this “you scratch my back” approach is the way many charities do business. There’s probably nothing wrong in it. They’re just cottoning on to the way other businesses operate. It’s bound to create an emotional reaction because it is the very human stories of disabled people that they are using.

Personally, I’d prefer a little more humility.

N.B. Here is the link to the original article –

The Kiki Dee Conundrum

It’s going to be a long day. Steven has discovered a new life conundrum.

He’s always been fascinated by actors playing different roles. The prime example of this for him is Rowan Atkinson. Steven loves and is fascinated by the fact that Mr Atkinson has been Mr Bean, Black Adder, Johnny English, The Rude Vicar. Steven likes to sort of the chronology of roles so we often have conversations that go:

“Rowan Atkinson was Mr Bean first. Then Rowan Atkinson went to play Johnny English”.

He likes to keep the support workers on their toes by deliberately getting it wrong and waiting for them to correct him –

“Chris – Rowan Atkinson was Johnny English first. Then he went to Mr Bean?” He finds this hysterical and waits in anticipation whilst the support worker consults his internal Wikipedia.

Steven does the same thing with John Cleese (“John Cleese went to Basil Fawlty first. Then  he went to Donald Sinclair”) and Martin Clunes (“Martin Clunes went to Gary Strang first. Then he went to Churchill”).

Another variation on this theme is cover versions, which hold an endless curiosity.  As I type, Steven is doing a music session and has included lots of covers. He’s listening to Kim Wilde’s version of “If I Can’t Have You” and teasing the support worker with – “Chris – Yvonne Elleman sings a Kim Wilde song”. Thankfully, Chris is on the ball and knows that it is the other way round. This kind of conundrum can provide Steven with endless hours of amusement. And the more cover versions the better. He can really go to town on the number of versions we’ve got of Unchained Melody.

But today has thrown up a new dilemma. Steven has known the soundtrack to Blood Brothers for years. I had the 1995 cast recording and he’s known that the woman who sings Tell Me It’s Not True is called Mrs Johnstone. With all the characters, he’s accepted them by their character name. In 2002 we went on holiday to Bournemouth and whilst there we went to see the touring version of Blood Brothers. During Act 1 we had the potentially meltdown inducing conversation:

“Dad – Mrs Johnstone looks a bit like Linda Nolan”.

“It is Linda Nolan Steve. Linda Nolan is playing Mrs Johnstone”.

Thankfully Steven accepted that and since whenever he listens to the CD, he talks about Linda Nolan playing the mother.

At the weekend I found my copy of the 1989 cast recording. This is when Kiki Dee was playing Mrs Johnstone. Cue confusion:

“Dad. Linda Nolan’s not singing this song.”

“No Steve. It’s Kiki Dee playing Mrs Johnstone”.

“Dad’s doing silly talking. Two ladies playing Mrs Johnstone. That’s too greedy”.

“Not greedy Steve. Kiki Dee went to Blood Brothers. Then Kiki Dee left and Linda Nolan came”.

I think I got away with it. I’ve just heard him say to Chris – “Chris – Kiki Dee went to Blood Brothers first. Then Kiki Dee went to Elton John?”

I might have got away with it for the time being but I’m going to keep to myself the fact that Mel C also played Mrs Johnstone. In fact, to quote another Blood Brother’s song, I’m Not Saying A Word.

At Home With A DoL

This week, I was notified that our LA are currently expanding their DoL catchment beyond people in Care homes, hospitals and ATUs and are now assessing people who may be deprived of their liberty in their own, or family home. Steven can expect his assessment shortly. I have been told, on good authority (Thank you Flight Lieutenant) that anyone deprived of their liberty in the community, without their consent and where the State is involved in their care, must seek court authorisation for the deprivation.

As regular readers will know I’m a big fan of the principles of the Deprivation of Liberty Safeguards because, if applied correctly, they go a long way to enforcing a very vulnerable person’s human rights. I’m still convinced that in our case, DoLs saved Steven’s life and without them, he would be living in that hospital in Wales. But I’m very confused, how it all gets applied to Steven’s current situation.

Firstly, Steven is living in his own home. He’s not living in the family home – he is the tenant. As far as the State is concerted, I am not family, as Steven is over 18. On all the official documentation (care plan, tenancy agreement) I am classified as “a live in carer”. So, with the DoLs assessment there should be no confusion about the status of Steven’s living arrangement. His care plan states that he needs 24/7 care, so when I’m not around, one of the support team takes on the mantle of live in carer. Would the fact that someone is around 24/7 amount to a deprivation of liberty? Or just good care? Or both?

Next Factor, and applying Lady Hale’s acid test – is Steven free to leave his home and would he be stopped if he tried to do so? The care plan states that Steven needs 2:1 support when he is out of the house. Once again, this could just be considered sensible care. If he has a meltdown whilst out, he could put himself and others at risk. The extra support is designed to minimise that risk. But does the fact he needs 2 people take us into DoLs territory? Would Steven be stopped if he tried to leave is not straightforward. In his reality, its almost hypothetical. Apart from his several escapes when he was in the ATU, the last time Steven took himself out of his home was in 2007. He’d spotted Geoff, a neighbour across the road, practising his golf swings in his front garden and went out to chat to him. I didn’t stop him going but I went with him. In that moment, was I depriving him of his liberty? So, it hasn’t happened for eight years but if it did, the same thing would happen. Nowadays, Steven announces what he wants to do – “Want to go and see Uncle Wayne”, ” Want to go to Ranjit’s sweet shop”. He wouldn’t try to go on his own. And there has never been any idea of Steven “escaping” from his own home. He’s not trying to “get away” but asking to go somewhere.

Are there any other potential deprivations within Steven’s own home? Given his day to day reality, on one level, it feels almost nonsensical to be considering this. Within the home, he come and goes as he pleases. I can’t think of a time when someone might say, “you can’t do that”. He is as autonomous as you and I. If he is agitated or having a meltdown, someone might follow him to the next room but that is to preserve the environment. A couple of months back, during a meltdown, Steven went into the kitchen and threw a bowl at the oven door, smashing it to smithereens. It cost him a fair bit to have the door replaced. So, during a meltdown, is that a deprivation or astute care? Or both? The only other examples I can think of are teeth cleaning, which Steven has never got the hang of, so a support worker will clean his teeth for him. I don’t think his dentist would be very happy if we didn’t do that. And arse wiping. But that’s just about hygiene surely. Going to the toilet, getting dressed, eating his meals are all done independently and nobody would dream of intruding. When a support worker is with Steven during a music session, he is engaging with him but if Steven asked for music on his own, then the support worker would leave him to it.

I was notified that the first step would be the mental capacity assessment. Now I know that the assessment has to de decision specific – has the person got the capacity to decide/consent to……..? So, in Steven’s current situation, what is the decision? What is he being tested on? I guess, a professional will decide where he/she thinks Steven is being deprived and will focus the capacity assessment on that. Does Steven have the capacity to decide he needs 2:1 support when he is out and about? Does he understand why it is necessary? Can he weigh up the pros and cons of the decision? Steven is so used to things being that way, I think he’d get confused by the assessment. Any probing or suggestion that it might be any other way is guaranteed to raise his anxiety. My big fear is that the mental capacity assessment triggers off his trauma from 2010, which is just under the surface at the best of times. His experiences of capacity assessments were all from 2010 and always left him distraught because he was stating quite clearly he wanted to live in his own home but was getting the clear message that he wasn’t allowed to. He is settled now in his own home. I don’t want him to start doubting his own security as a result of a clumsy assessment.

Once the mental capacity assessment is out of the way, then presumably the professionals will consider whether any deprivation of his liberty they discover is in Steven’s best interests. Given that the professionals wrote his care plan then they must surely agree that it is in his best interests.

And finally they will apply to the Court to authorise whatever deprivation they find. I have no idea how much that will cost but it won’t be cheap. In fact, the whole process of meetings, best interests assessors, volumes of paperwork will cost a pretty penny. And for what?

I’ve written before about the DoLs industry. It is vital that the human rights of a vulnerable person are upheld. It is vital that a vulnerable person is not unlawfully deprived of their liberty. But the DoLs scheme seems to be in such a pickle now. The scheme has come a long way since HL & the Bournwood case and is danger of disappearing up its own arse. I’m not sure that when the LA begin this latest DoLs process, it will really be Steven that will be at the heart of that process. I’m not convinced that so much effort and time and money will go into the pure motive of preserving Steven’s liberty. That strikes me as a bit of a shame.