Plan Z – The Wheat & The Chaff

A couple of weeks ago, I wrote about putting my “Death Plan” in place. I did an initial post on the subject –

To be honest it has been an unbearable task. Every section of the plan I’ve written has brought about howls of anguish as it brings home all the mechanisms that need to be in place for Steven to be able to continue living in his own home in the future. Never before, have I considered something that feels so important but so futile at the same time.

To be honest, there is no reason whatsoever why Steven can’t continue to live his life as he would want to. The detail I have included in the Plan is not unreasonable and is well within the Care Team’s capability. The big question mark is whether the State will allow it to happen.

I’ve nearly finished it and one thing that struck me this morning was how I have weighted the different sections of the Plan. Obviously, there are key sections like: how are the finances managed; what do I order each week from Tesco; all the contact details of the various organisations involved in Steven’s life. I’ve found though, that I’ve given equal weight to trying to replicate the more personal – the things that Steven does with me; the things that he talks to me about. Who will do those things and how? Will he still be able to have those conversations and with who?

As an example, I’ve thought about the two compilation tapes we do every weekend. They may appear quite random to an outsider but there is some method in the madness. We may do a whole tape with songs that have people’s names in the title (Barbara Ann, Valerie, Billy Don’t Be A Hero). We may do a tape with artists whose name begins with the same letter (Steps, Slade, Sonny & Cher). I’ve typed them all up! 70 categories! Steven being Steven, all our CDs sit in alphabetical order but is too much of a tall order to expect someone to take on this job every Saturday and Sunday.

Then there is the conversations. I’ve done a pictorial family tree, so that someone less acquainted can see where everyone fits into Steven’s history. I’ve named the names and the relationships but I can’t possibly include the 100s of stories about them that Steven chats to me about. A conversation between two people with a shared history is a very different conversation to two strangers having a conversation about one of their histories.

My priorities, and fears for the future, showed up markedly in my list of “Important Contact Phone Numbers”. This is how the list was ordered: 1) Support Workers, 2) Family & friends, 3) Medical, 4) Legal People, 5) Press and Media, 6) Advocates, 7) Official Organisations (DWP, OPG etc), 8) Places Steven goes to, 9) Tradespeople. I guess numbers 4,5 and 6 reveal that I expect the future may be bumpy and they could have a fight on their hands.

It struck me earlier how far we have moved on since the days of the Positive Behaviour Support input into our lives. I was scrolling my Facebook timeline and someone had started a thread, asking for help about dealing with her son’s meltdowns. I realised that I hadn’t included anything in the Plan about managing difficult behaviour. Not because we don’t get it anymore; more because we can take it in our stride. Five years ago, my living room table was covered in Lever Arch folders with 100s of pages of PBS risk assessments and risk management plans in them. Those days are long gone, both in the need for such documents and the priority we give them.

Someone asked me on Facebook the other day if I would post the final plan to help other people planning their son’s/daughter’s future following their death. A number of people chipped into the thread encouraging me to do just that. I’m not sure that I can. It is too intensely personal for wholesale sharing. And social media being social media, it is bound to attract people wanting to give advice, or people telling me I’ve done something wrong, or even just general feedback. I’m not tough enough for that. But when I have completed the whole thing, I will post a very basic template; it just won’t include any of the deeply personal information. I’m not convinced anyway that people don’t know where to start putting a Death Plan together. I’ve been putting it off for years, not because I haven’t known how to do it but because the whole process is so painful and upsetting. That’s the barrier that needs to be cleared before one can start and an acceptance that it is going to be one of the most difficult projects one has ever had to do.

I know that I will probably have to update the Death Plan several times in the years between now and my actual demise but it could just become an annual job – a task for those wet Spring bank holidays. The one good thing about completing a Death Plan is it allows you to get on with the business of living.

And that’s what we’re going to do. It’s Sunday, so it’s compilation tape today. And today we will be doing Songs with Place names in the title.

What’s the chances we’ll be singing Letter From America at the tops of our voices later?

The Independence Void

I’ve hit a bit of a brick wall in funding Steven’s growing call for independence.

Since he moved, he’s been asking for more time by himself (without me) and we’ve tried really hard to respect that. It feels like a good, positive move.

However, there always needs to be somebody around so I’ve had to ask the support workers to carry out additional shifts. Basically, it works out to an extra 6 hours per week plus 2 additional nightshifts. The workers have been brilliant and offered to do the extra hours at a lower rate because they could also see that this was a good thing for Steven. The Personal Budget is so tightly calculated and controlled that there is no spare money at all to cover these extra hours, so since December I have been paying the additional £100 myself. I’ve nearly exhausted my savings, so it is going to be impossible to maintain this expense. But to not do so will compromise Steven’s autonomy.

In December I claimed Carers Allowance for the first time. I thought this would help towards the extra support money I was having to pay out. Ironically, although I now have extra hours free during the week, my paid work has decreased significantly over the past year. Clients have finished and I don’t have the access to new ones like I used to. For some reason, I got awarded Carers allowance from 3rd October to 15th November (even though I hadn’t asked for it) but have had nothing since. We have fortnightly telephone conversations and they have sent me 9 forms to complete about my income but no more money has been forthcoming. I have no idea whether there will be an ongoing entitlement.

I hadn’t mentioned the extra hours to social services for a simple reason – fear. I know they have banged on about Steven’s independence since 2008 but they don’t really mean it. Not in the true sense anyway. They talk about it as a cover for cutting budgets. I feared that if I asked for any extra hours in the Personal Budget they would decide that it would be cheaper to provide Steven’s care in one of their dreadful supported living flats, or a residential placement. However, when we had the community DoLS assessment back in March, I thought I’d broach the subject with the social worker. She sounded very open and promised to speak to her managers.

Today, I received an email on the subject. Nothing has been agreed. They want more information before making a decision. They’ve asked for records of the money I’ve paid out and the time sheets covering the new shifts. This is awkward. Because the new shifts don’t form part of their normal contract, they haven’t been including them on the timesheet. I can see that there is a problem before we’ve even got out of the starting blocks. I guess I’m asking them to trust and believe me and the system doesn’t work that way. I guess it all boils down to me wanting to live in our home, whilst the State just sees our home as an extension of their office.

I wrote a blog a couple of years ago about how the system attacks families. One of the most common ways is by doing absolutely nothing at all. Putting off making a decision. Keeping the family in limbo for months on end. Asking endless questions to deter the claimant. I’ve come very close on several occasions recently to saying to both the Carers Allowance people and social services – “Don’t bother. It’s not worth the hassle”.

Trouble is, if I don’t pursue this, we’ll have to go back to the old support arrangements and Steven loses that independence, or autonomy, that he’s striven so hard to achieve.

A Ninja Plays Powerball

I’ve been way out of my comfort zone for the last couple of weeks. I’m trying to write a novel and plotting, sub-plotting, devilish denouements aren’t my usual style. But I’m intrigued by the process and fascinated by the way the book keeps turning into something quite different than I originally planned.

I think several things have come together to prompt this book. I’ve been feeling a bleak despair over the lack of ATU action. I’m not sure what it is going to take for people with learning disabilities to be seen as human and for their human rights to be respected. Loud, emotional campaigning doesn’t seem to work. I’ve got grave doubts that polite, partnership working campaign’s can fare any better. Solitary petition led campaigns appear to play right into the Powerfuls’ hands. I keep thinking back to the suggestion from a couple of years ago that what is needed is a troop of Ninjas.

At the same time, I’m still doing my family history and have been reading a lot about the mid 1800s. One thing I keep finding is that there were an awful lot of philanthropists at that time. We don’t tend to hear about them anymore. But a Ninja philanthropist would be a godsend to all those people trapped in ATUs.

The other thing that keeps coming up to drive the book is a dream I had last week. I’ve never had a dream like this one before. I am with a group of people in a museum browsing the display cabinets. I am not engaged. A giant screen is showing footage from the 1800s. I am not engaged. Then the film on the screen changes to a match at Southall Football Club in 1979 and I remember that I was at the game. I move closer to the screen and I suddenly realise that I can climb into the screen. I am inside and do a circuit of the pitch, arriving behind the goal just as we score. I come face to face with 20 year old me. We can see each other but there is an invisible barrier between us. My 20 year old self isn’t the slightest bit interested in me and the footage evaporates as I hear the words, “You can’t go back”.

The book?

27 year old Ben is approaching his second anniversary in an ATU. He went away for a week as his father arranged his mother’s funeral. The father has tried several campaign’s to get Ben home but nothing has worked. On his way home from visiting Ben, the father stops at a motorway service station. There is one other customer, who the father recognises as Ben’s childhood hero – Spartacus from the TV programme, Gladiators. After the series finished, Spartacus became a multi millionaire building gyms across the Mediterranean but for the last ten years has become a recluse. The father tells his story and Spartacus decides to don his famous lycra costume, one last time and help get Ben out of the ATU.

I think I’d like it to be like an old road movie and the relationship of two middle aged men as they learn that they can’t go back and try to work out their place in 2017.

I’d like to think they’ll succeed but if nothing else, I’ll make my therapist earn her corn as she entangles a dream turned into a novel.

The Approved Support Providers List

Another day. Another social care “choice and flexibility” scam.

Yesterday, I received the minutes of the latest local “Carer Experience Forum”. This is the regular gathering, organised by the council, where carers are invited to be told about the council’s latest wheeze to make the carers life better. This time it looks like only one item was on the agenda – the launch of the Approved Support Providers iniative.

A bit of background. For many years the council have awarded a contract to a local disability charity to provide support with all things direct payments. The council refuse to offer any advice or help on direct payments – they just signpost you to the charity. The council are excellent at not giving support. When I agreed to take on a Personal Budget, they diligently refused to answer any of my questions which left me feeling like I was on a major motorway with neither a car or a map.

However, I love our local charity. They found us our first support worker 15 years ago and he’s still with us. They spent hours with me at the start of the personal budget, teaching me how to run a payroll. Last year, I had a mental block over the tax return and they came round and held my hand as I sorted it out. Just last week they helped me as I was trying to organise self employed contracts for all the support workers.

The contract expires in July and the council have decided that the carers need more choice and flexibility in how they get their direct payment support. The council won’t be renewing the contract with DASH: in fact they won’t be awarding a contract to anyone. Instead, they will be issuing every carer with an Approved Support Providers list and the carer can chose a provider from the list and negotiate their own contract with them for whatever support they need. The carer then goes back to the council and tells them what sort of contract they’ve negotiated. The council then decides how much they will contribute towards your contract and allocate a sum of money in your personal budget to cover the cost of your contract with the approved support provider.

At the end of the minutes there is a Q&A and 24 questions are asked. Most of the questions are along the lines of: “I’m happy with DASH. Why do I have to change?” or, “Why can’t you do this for us?” Every question is met with the same robotic answer – “This is about the budget holder having more choice and flexibility in the most cost effective way for the council”.

Whilst reading the minutes, I truly felt the attendees pain and bemusement. Yet another burden in the name of choice and flexibility. As much as I like DASH, I couldn’t give a monkeys who provides the support but I don’t want to waste any more precious energy finding and negotiating that support myself. Just provide the fucking support and I’ll take what’s offered. You can call it choice and flexibility but really it’s about desperate penny pinching. And the end result is that the personal budget holder has gained another outsourcing maze to add to the many others he has to navigate in the name of Personalisation.

My immediate reaction is to go, “Sod it. I haven’t the time or inclination to go support provider negotiating, I’ll go without”. I’m sure lots of other carers will think and do the same.

And that’s precisely what the council want you to do.

Personal Budgets are totally inaccessible for many learning disabled people who haven’t got a carer to manage it for them. This new choice and flexible scheme is another nail in the coffin of accessibility.

Transportation & Imbeciles

Following on from last week’s news that St Andrews are planning on taking on a cohort of mentally ill Bermudians as an exciting “new source of income”, today we learned that they have been taking mentally ill and learning disabled children from Ireland for many years. One part of this outrage is that the Irish authorities didn’t start keeping records of this transportation until late 2014, so they have no idea what became of those children prior to that date. How many were there? How many are still there? Who is looking into the care and treatment they’re receiving? We’ll never know. Another story in the history of lost children.

I’m not sure why but this is reminding me of the latest research I’ve been doing into my family history. I’ve now been able to flesh out quite a bit about the life of my great, great, great grandfather, William Worley. He was born in 1801 in Seer Green, which was basically nothing more than a very large farm. Like most men in the village, he started working as a labourer on the farm from the age of 11 and that was to be his lot, as far as his working life would go. He married Rachel in 1824 and in the same year, had his first son, John. John was an imbecile. It appears that it was quite a shock to this newly wed couple in their early twenties because they didn’t have another child for 5 years and when they did, their second child died at 6 months old. Then between 1831 and 1839, they had six more children in quick succession. Rachel died during childbirth of the 8th child in 1839. One of the reasons, I like William Worley is that he named his 8th child Rachel, after his late 33 year old wife.

Two years later, the 1841 Census, sees the family already dispersing. William is living in a 1 bedroom cottage with baby Rachel and 3 more of his children. Five year old George is living with Rachel’s mother. My great great grandfather, William junior, has been taken in by the local grocer. And John, the imbecile, is now 17 and living in a cottage with 7 other people who don’t appear to be related. But he is still in Seer Green.

Later that year, William is arrested for burglary and is sentenced to 10 years imprisonment. I’m not sure how he fell into crime but the reasons seem pretty obvious to me. Needless to say, his incarceration led to further dispersement of the family. John was admitted in 1843 to the recently opened Northampton Lunatic Asylum (now St Andrews) and died there in 1853, aged 29.

When William was discharged from prison, two other of his children had died, including Rachel at the age of 12. The other 4 had been scattered around the country. Most of the children died relatively young. In fact, when William died aged 72, he’d outlived all but two of his own children. After prison, William spent a couple of years in lodgings but by 1855 he was in the Amersham workhouse and stayed there until his death in 1873. It’s very difficult reading the Census details of a workhouse where so many people were crammed into one room. In the 1861 Census, next to William (next bed?) is 18 year old, George Barnett. George is classified as an imbecile. I can’t find any other Barnett’s in the record, so presumably George was there on his own, away from his family. In the ultimate irony, George’s place of birth is listed as Northampton. Whilst John Worley went one way, George Barnett went the other.

Bermuda, Ireland, Northampton, Seer Green. 200 years.

Our history. Our present.

Plan Z

It’s an odd sort of space at the moment. Not sad. Not depressing. I can’t quite find the adjective.

My sister and I had that conversation the other night. That one. The one I’ve been putting off for years. What plans are in place for Steven following my death? There I’ve said it now. It’s on record. You heard it. Time to start planning, or tending to my affairs as they used to call it.

I’m not unduly bothered about my death. I’m quite intrigued my next incarnational encounter with Whistler’s Mother. We had the bloodbath at the French Revolution, both suffered through the Irish potato famine and in more recent times had a face off across the floor in the Court of Protection. We have unfinished karma, so we’re bound to run across each other again. My friend and I were discussing how you become invisible as you get older; nobody notices you walking down the street or in a restaurant. Perhaps death is the final invisibility.

What got me and my sister onto the subject was the dreadful run of stories this week of people suddenly being carted off to ATUs. Four online friends have faced this horror in the past few days. Their family member isn’t ill. They don’t need assessment or treatment. For various reasons, unrelated to the person being detained, the support packages have broken down. Or, crucial parts of the support package that have been promised, haven’t transpired, leaving a crisis situation. Whilst alive, this is the fear that every family with a learning disabled member faces daily. It keeps me awake often. It has affected my health, physical and mental. A change of council policy, a new social worker, a reframing of a support need and BANG, everything you know and rely on, gets thrown up in the air.

Death certainly throws everything up in the air. I’m not even trying to tend to the emotional preparation for that. The important thing is have written down, every aspect of Steven’s care. Chose a “management team” for Steven’s ongoing care – it is too much to ask of one person. Not because of Steven but whoever takes on the task will be entering a bureaucratic kingdom from hell.

I’ve made a small start. I’ve been in touch with the bank to make sure the Personal Budget account and Steven’s account don’t get frozen upon my death. That has to carry on as normal. I’ve started to write a “Best Interests” statement, going into great depth why Steven must be allowed to continue living in his own home. But will it be listened to? I’ve began several lists: the things I buy in the weekly shop; the order of songs on Steven’s holiday cassette; the names of people in the 26 photo albums.

The real truth is that I could live another 10 years and spend the whole time doing this preparation.

And it won’t be enough.


Another day. Another Twitter debate about why thousands of people are trapped in ATUs. Another debate where professionals who should know better pull out their trump card – “Lack of local expertise and skills” to shut down the real truth – lack of will and vested interests – being exposed.

I’m too fed up with that tired, offensive excuse being trotted out with depressing regularity. The implication stinks – the person is too complicated and challenging to be living in their own home and an institution is the best place for them. Engaging in that conversation perpetuates the fantasy, so let’s stop doing it.

Instead, let me tell you a few things that have happened in Cowley over the past fortnight and the input of Steven’s “unskilled, inexpert support team”.

1. Brought and fitted new living room curtains after a meltdown led to the slat blinds lying in a crumpled heap on the floor.

2. Taught Steven what the African lyrics in Going Back To My Roots mean.

3. Sat for an hour on Steven’s bed, reassuring him when he was upset and anxious about my late return from Scunthorpe.

4. Extended a shift by 45 minutes (unpaid) to go to the shop to buy some Crumbled ham.

5. Upon delivery of his new CD, learned and discussed the difference between Laurence Fox and Mr James Hathaway.

6. Took a pair of pyjamas with a hole in the crutch, home to repair.

7. Noticed the small sweet shop was busy and waited outside singing Shania Twain songs until the shop cleared.

8. Discovered a TV channel that plays 1980s music videos 24/7.

9. Mowed the back lawn.

10. Rearranged Steven’s schedule when they realised Take That were appearing on the Ant & Dec show.

That’s the sort of skilled expertise that’s developed when you have human beings interested in each other.


Lady Hale Comes To Cowley

Today, Steven had his Community Deprivation of Liberty Safeguards Assessment.

The need for this came about from the Cheshire West case and Lady Hale’s famous acid test. Up until that point DoLS had only applied to people who lacked capacity and were in a care home or a hospital. The acid test extended the scope of the safeguards to, among other things, supported living and crucially in our case, people living in their own home. As I wrote last week there isn’t one minute of one day as I watch Steven living his life in his own home that I consider he is being deprived of his liberty. The idea is beyond ludicrous. Mind you, I never think about the acid test either as he is microwaving his sausage and spaghetti hoops.

The new social worker came and she was great. I think we made an unspoken pact in the first five minutes, along the lines of “We both know this is nonsense but we have to do it, so let’s not debate the point of it and just do it”.

As Willy Russell did with Blood Brothers, I’ll give you the ending at the start. It’ll save time and then I’ll describe how the conclusion was arrived at.

Yes – Steven is being deprived of his liberty in the Cowley house.

The first part of the acid test is, Is the person free to leave on their own? I struggled with this because for me, “free” doesn’t come into it. Steven is assessed as needing 2:1 support for his, and others’ safety. Steven has never tried or asked to go out on his own but for the purpose of the assessment, that is neither here nor there. The fact that he needs someone to go with him to the shop to help him with the money is enough to tick box one of the acid test.

The other part of the acid test is, Is the person under constant supervision? This is more involved than question one. The language of a community DoLS is very different to the language of a care plan. In his care plan Steven is assessed as needing 1:1 support in the home, partly for the same reasons as question one but also because he needs help with things he struggles with. “Support” in a care plan becomes “Supervision” in a community DoLS. I got stuck at this point because I don’t really see Steven needing supervision, using my normal definition of the word. But that is also neither here nor there because for several reasons, Steven is seen as being supervised. Here are a few of the deciding factors (There were a lot more that I’ve already forgotten):

1. Help with some aspects of personal care – teeth cleaning, shaving & arse wiping.

2. Help with setting the controls on the washing machine.

3. Help with changing the settings on the TV from TV to DVD.

4. Help with cooking a meat and two veg meal.

5. Help with organising repairs if anything gets broken.

6. Help with doing the online weekly shop.

7. Help with reading letters.

8. Help with dialing the number on the phone to arrange his transport.

9. Help with potentially dangerous household chores (like ironing).

And that was that. All those things amount to Steven being deprived of his liberty in his own home. I came periously close to a “the king has got no clothes on” moment by remarking that this new perspective of DoLS must account for all the learning disabled people living in their own place or with their families. The social worker confirmed that there are 1000s in the borough going through this process. It also covers people with dementia living with their families.

I did have the rather uncharitable thought at one point that all this feels like a million miles from the Mental Capacity Act, which was designed to be an enabling piece of legislation. Perhaps that’s what’s at the heart of this nonsense – enabled people means less bureaucracy. And we can’t have that.

What happens next? I get the paperwork as the Community DoLS equivalent to a Relevant Person Representative. I’ve forgotten the name of my new title but it certainly ain’t “Dad”. The social worker has “mountains” of paperwork to complete and then the whole lot will be sent off to the Court of Protection for authorisation.

I have it on good authority that it costs the LA £400 to take each authorisation to the Court. Needless to say, some unscrupulous LAs are trying to pass the cost of that on to the person. Just imagine – you might have to pay £400 to authorise your own deprivation of liberty in your own home!

Oh, and in a year’s time we’ll do it all over again.

There was nothing threatening about the process. I didn’t feel personally singled out. It was a nothing process.

Were there any advantages, benefits or disadvantages for Steven in all of this? In case you’ve forgotten after this stream of bewilderment, this is all about his life.

In the epitome of the law of bureaucracy, all this matters not one jot to Steven’s life. Nothing changes. Nothing is made better; nothing is made worse. Nothing happens.

Yesterday Private Eye ran a piece about the Law Commission’s new scheme and quoted considerably from Steven’s 2010 case. I might contact my old buddy, Heather, at The Eye and tell her about today’s nonsense. It’s right up their street.

Just think how many people have had their care packages cut to pay for this administrative balderdash.

Significant People With Significant Stories

Regular readers will know that I’ve been connected with the campaign 7 Days of Action. Over the past three days there have been some major developments in the direction of the campaign. I’ve been struggling to get my head around the changes and what has taken up a lot of my head space; where do I fit (if anywhere) in the new direction.

The big problem for me, and I hope this isn’t seen arrogantly, is that many people see 7 Days of Action as my campaign. It isn’t and never was. One day, I was minding my Facebook business & found I’d been invited to join a private messanger group. The group had been started by several mothers who had family members held in ATUs and we’re starting a national campaign to raise the profile of their situation and ultimately, to get their children out. The group invited several people to join in the hope that the more creative heads the better would bring about a successful outcome. It was my idea to write the 7 daily blogs focusing on one detained dude each day. I volunteered to edit the stories and publish them each day over the first campaign week. I think a big mistake we made was not to set up a Twitter account for the campaign so all the blog stories were tweeted initially from my account and once published, others retweeted and shared across social media. But that was my job within the campaign: it was the families’ campaign. I can see how the misapprehension happened but I tried consistently to put people straight when they assumed I was the leader.

Over the year, lots more people become involved which was great for the scope of ideas that went into the melting pot. A steering group developed and the personnel has changed over time. A second campaign, similar to the first, was run last autumn. Again, I took on the same role of editing the stories but there were many others working just as hard, or harder, on other areas of the campaign. It felt very much like a team effort to me and even though the subject matter of the campaign was harrowing, the creative energy was very invigorating.

A few months ago, something happened that I feared threatened the integrity of the campaign. I’m not going into details because I’m not going to break the confidentiality of the people involved. Lots of discussions took place and I think my reaction may have been over dramatic but I felt uneasy about what could be a compromising position. Others disagreed and the group took the decision to lay low for a while and relaunch the campaign this spring, possibly with a new name. Collectively, the name My Own Front Door was agreed as a way forward and ideas started to come together for the new campaign.

Then Dispatches aired their programme about St Andrews and the group started to see the way forward needed a new tone, a new way of operating. I posted an article about the hospital and my language offended some people. As the group clarified it’s direction, it decided a more collaborative approach was needed and that the angry energy that had fuelled the first year needed to be more considered, if the idea of establishing partnership relationship with providers, commissioners, professional stakeholders was to evolve. This made sense to me but knew it is not my style and that I’d inadvertently stitch things up in the future. So, I resigned from the steering group as that felt the best thing for the campaign. It still does.

Then yesterday, the group announced the decision taken by the steering group which is to run two things with the collaborative project, My Own Front Door running as well as the 7 Days of Action campaign. I must admit, it took a while for the penny to drop for me that that was what was happening. My gut instinct was that the two things aren’t compatible because the approaches and styles are so different. To be honest, I wanted the new group to be brave and run with their original idea as it may lose some people but it might bring a lot of new people on board too.

I couldn’t clarify my thinking though.

Until this morning. I was telling the Get Steven Home story at a conference in Scunthorpe. The other speaker was the wonderfully inspirational Luke Rodgers. Luke spent much of his childhood in foster care but has now set up an organisation called Foster Focus and one of its aims is to encourage care leavers’ creativity to create new and meaningful lives for themselves. Luke spoke about his care experiences from the heart, was witty, humble and didn’t pull any punches considering the audience was made up of social care professionals. His theme was the significant people in his life. It was very real and profoundly inspiring. We chatted afterwards and I realised we both shared a pragmatic view of telling our stories. We didn’t see what we were doing as partnership working. We don’t speak that language. We were telling real stories and what the listeners do with those stories is entirely down to them. It may change someone’s practice; it may not. That is not our responsibility.

It did help me understand that I tell stories. Whether it is mine & Steven’s story, one of the seven dudes’ story or a fictional story from Committee Room Five, that is what I do. That is my contribution to what we originally termed the ATU scandal. And I’m happy with that. I don’t lead campaigns because I have neither the skills nor the energy to do that. I don’t do collaborative working because I don’t have the language or the temperament to do that. I write stuff.

Walt Whitman – Oh Me, Oh Life

“That you are here. That life exists and identity.

That the powerful play goes on and you may contribute a verse”.

Today, I remembered my verse.


The Day Cowley Became A Gilded Cage

Oh irony of ironies.

The other day, I resumed my blog after my self indulgent break with a post about the Law Commission’s report on their new Liberty Protection Safeguards – the scheme to replace the Deprivation of Liberty Safeguards.

After I pressed “publish”, I mooched about on the computer for a little while and into my inbox pinged an email from Steven’s new social worker. She has been on the case since last November, although we haven’t met her yet. In the email she was proposing a visit to assess Steven to see if he is “subject to a Community DoL”. Oh dear. We’re back down that road again. It was first mooted back in 2015 but successive social workers have never actually got round to doing it.

I have to say there is not one single moment of one single day as I observe Steven going about his business in his own home where it occurs to me that he might be being deprived of his liberty. Having been through the DoLS process when Steven was in the ATU, there isn’t any comparison between his life then and his life now. The doors aren’t alarmed. He isn’t subjected to face down restraint (or any kind of restraint for that matter). He isn’t given bucket loads of anti psychotics to make our job easier. He isn’t prevented from going out for three months whilst we risk assess all the venues he goes to. He no longer lives an institutionalized life.

So, do the deciding factors in Lady Hale’s Acid Test apply to Steven in his Cowley home? Is he free to leave at any time? Is he under constant supervision? Immediately, I hit a problem because that is not the sort of language we use in his home. Steven’s life isn’t framed that way anymore. In the ATU, Steven was always trying to escape. In the six years since he’s been home, he’s never once attempted to escape. If he wants to go and get some Chewits, he’ll say to me or the support worker, “Want to go to Jay’s sweet shop to get some sweets”. And off we go. I suppose the DoLS assessor will concentrate on the “we” in the previous sentence. Why is it “off we go” rather than “off he goes”? There are a number of reasons. Steven has poor road sense. Steven struggles with money, so would have difficulty paying for his Chewits. If a barking dog was to pass him along the street, Steven will become anxious and possibly kick the dog. That’s why someone accompanies Steven to the shop. We don’t see that as not being free to leave.

The second factor is “constant supervision”. Steven needs someone with him 24/7. This is to support him with those things he cannot do and to prevent him from coming to harm if he becomes anxious. I’ve never once heard the support staff say that they are “supervising” Steven. It isn’t the language of home life but it is the language of the institution. Steven has just put his Carry On Doctor DVD on. There are eight DVDs in the boxed set and he needed my help in selecting the right disc. As the menu is pictorial, Steven was able to select the correct movie from the drop down list. Was my input there supervision? Or helping? Now that Steven has settled into watching the film, I am typing this blog in my room and the support worker is doing the ironing in Steven’s bedroom. Neither of us are directly supervising him.

Graham Enderby, who should know more about DoLS than most, said to me recently: “DoLs were meant to be about getting people back into their homes. Now they are about keeping people from their homes”. He’s spot on. And this ridiculous attempt to assess for a deprivation of liberty in one’s own home has been shoehorned into legislation that wasn’t written with that purpose.

I’ve no idea what is going to happen at the social worker’s visit on Thursday. I’ve no idea of the questions that will be asked. I’m already feeling mightily resistant to Steven’s life being reduced to something that it clearly isn’t. To compound the nonsense of this, if the assessor decides that Steven is being deprived of his liberty in Cowley, the DoL can only be authorised by the Court of Protection. A supervisory body authorisation doesn’t apply in Community DoLS cases. Just think of the time and the cost involved in that exercise. I imagine the social worker leaving on Thursday; Steven and I will get on with living our lives exactly as we were doing immediately before the visit. But a whole team of professionals will burst into action to follow through the bureaucratic process. Once again, another process that is nothing to do with Steven’s life.

Roll on LPS. Perhaps a more sensible approach will be adopted.