Here I’m Not

Yesterday I attended the Learning Disability Today conference in London. It was very well attended, had some excellent speakers and tried to tackle the big subjects in the learning disability world.

So why did I feel more and more uneasy as the day wore on? With a handful of notable exceptions, most of the speakers didn’t have a learning disability. Most of the messages were along the lines of, “Things are really shite but we have to keep fighting”. Co-production was very popular but it was fundamentally about what can we do for you. It was, where are we, five years on for Winterbourne View?

Sorry if it appears like I’m always knocking them but Mencap had a stall amongst the exhibitors. A few people with downs were wandering around, wearing t shirts with ” Here I Am” emblazoned on them. It smacked of dressed up dolls. Surely the fact that the people were there said Here I Am. It didn’t need the rather patronising costume.

But it focused my unease because in spite of the good intentions, for the vast majority of learning disabled people, their t shirt would have read “I’m Not Here”.

I was asked to speak in a panel session about our experiences of having a personal budget. I was acutely aware as I spoke that I was presenting a narrative purely from my perspective. Nothing to do with Steven who I don’t think has a view on personal budgets. The budget is a pain in the are for me but its not for Steven. In fairness, I was making the point about the inaccessibility of personal budgets but it was about me. When I sat back down, I realised that for Steven, the conference was inaccessible too. The train journey would have triggered a meltdown before he’d arrived. The huge crowd at the venue would have brought about a sensory overload. Steven prefers talking to listening but he would have had nothing to say. He wouldn’t be joining the call to ” give us a voice”.

In a way that’s okay. Its not his arena. He can claim “Here I Am” in other places. So possibly, my unease is all about me?

I bumped into Mark Brown and we bunked off to the bar at the adjacent hotel and played with the idea of an alternative learning disability conference where Steven and his peers could have a voice.

Without a T shirt.




Brief, Chance Encounters

I’m still whirling after a series of brief encounters. I do believe in the phrase, “If you build it, he will come”. I just didn’t expect so many people to come.

As regular readers will know I’ve been involved in the 7 Days of Action campaign. So far, we have run two campaigns – in April and October. It is probably fair to say that the October campaign didn’t have the same level of impact as the first campaign. The campaign steering group discussed ideas for the next campaign and I threw my hat into the ring and suggested a play.

The idea of the play is to write a play in the form of a single character monologue. The play will have seven scenes and will be recorded and released as seven podcasts over the seven days of the 2017 campaign. I’ve written the first draft of the play and we have actors lined up to play the two central characters. Although it is a fiction, the main character’s story is a familiar one because it draws on several experiences of people who contacted the campaign with loved ones in ATUs. Quite a few people have read the first draft and have given some fantastic critical feedback which will feed into the second draft which I’ll get cracking on next week. It is going to happen.

On Thursday I travelled up to Birmingham to speak at a BIA’s training event. I love this gig, which I’ve been doing twice a year for the past four years. Wendy, the trainer, is cracking company and the audience are always warm and receptive. Wendy always lines up some impressive other speakers and I always come away having learned a lot.

Over dinner on Thursday, I told Wendy about the play and she was dead excited. For some time now, Wendy and her co-trainer, Ming, have been exploring the idea of a play that is the same story but presented from several different perspectives. Their original thought was to take one of the landmark Court of Protection cases and write a play based on the different people involved in the case. It would include a scene narrated by the person detained; another featuring a family member, another from the social worker’s perspective. Possibly a scene written by the BIA and a scene by one of the legal people involved in the case. I thought this was a fabulous idea and asked to take part – I could write family member’s story.

The other speaker at the event was Judge Eldergill. He was the Judge at the centre of the landmark Manuella Sykes case and he contributed to a drama that Radio 4 produced about the case. During the break, we talked to the Judge about the idea of the play and he said he was very interested in writing a scene from the Judge’s perspective. Can you believe that? A chance encounter whilst having a smoke and a High Court Judge comes on board. Ming also arrived and she would be the obvious person to write either the social worker or the BIA scene.

I think there are two plays here.

If anyone is interested in being involved, please drop me a line. There are lots of people involved in Court of Protection cases and to have as many different perspectives in the play as possible would undoubtedly add to the drama. First and foremost, we need someone to write the central character – the person detained. But other roles, IMCAs, solicitors, staff in the ATU will all have something valuable to give the project.

Let’s get this show on the road……..

Living Units

I’m looking for investors. I need community Partners. I’m going for co-production in a big way. I want to build five developments totalling 100 living units for people with challenging behaviour and complex needs. Nice curved walls. Welcoming communal spaces. Probably positioned near to (or inside) the industrial estate.

I encountered two of my target group yesterday whilst I was accessing the community. There was the woman who stopped dead in her tracks as she got off the bus to read her Facebook messages, causing a pile up behind her. We had nowhere to escape, the driver shut the door and we were driven off to the next stop. Half an hour later, another woman did exactly the same thing as she got off the escalator in Tesco. She was plugged in, so she didn’t hear my plea of “mind out of the way please” leaving me no alternative than to drive my trolley straight into her.

These people have extremely complex needs. Unfortunately, due to their condition, they are unable to show empathy so it was my fault that I ran into the woman on the escalator. These people don’t feel empathy but my goodness, they don’t half feel outrage. (Note to self – must build sensory room in living units). The woman on the bus had absolutely no idea that the five people behind her missed their stop. She had something important to do and it had to be done NOW. This is extremely challenging behaviour that requires a good deal of multi disciplinary input.

But it is important that we encourage these people’s independence whilst acknowledging the risk they pose to the rest of society. Independent studio flats will enable the privacy to text away to their hearts content, whilst the communal spaces will encourage the learning that the world doesn’t revolve around them. (Note to self – must engage an on site positive behaviour support team).

It’s been a bad week for Transforming Care. St Andrews, which already has over 1000 beds is opening another 110 bed ward in January to gobble up another cohort of learning disabled people. Up in Northumberland, a 100 unit Unit is being built, specifically for people with autism and challenging behaviour. The publicity for the place stresses that it will be a place “for people currently in less appropriate settings”. It will be built across the road from a step down unit so presumably this is a step down unit before you go to the step down unit. Then yesterday, the Clan field Post announced the building of 100 one bedroom/studio living units spread over five sites in Hampshire for people with complex needs. A care home with 100 front doors. 63 units have already been planned on four sites, with presumably, the other 37 being built at the development in Winchester.

Complex needs are in the eye of the bebolder.  One man’s challenging behaviour is another man’s completely authentic expression. I wouldn’t trust a single one of the groups usually tasked with diagnosing challenging behaviour. The property developers need the label to generate big bucks. The therapists need the label to trumpet their model. The charities need the label to justify their existence. The industry needs the label for the industry to grow. Wouldn’t it be interesting if the world woke up one day and the whole construct of challenging behaviour was about people who text in public spaces? The industry would remain the same but have a completely new target group.

One thing these places have in common is they never mention a home, a house. People with ” complex needs” have to be painted as such so as to scare off the locals and justify the development. Heaven forbid, a person with autism lived in a normal road with non autistic neighbours. The industry is built on such a fragile illusion, that to call somewhere a home, might cause the entire industry to crumble.

Excuse me but I need to get back to work. I was just taking a break whilst the cement was setting on the 80 bed unit I’m currently building for complex diabetics.

Rip Them Off & Start Again

I’m not sure if this post is a self indulgent, self absorbed pile of shite or further evidence of the underhand ruthlessness of Local Authorities in ripping their disabled residents off.

One thing it does show (sadly) is that my transition from Dad to Project Manager is complete.

It’s 1.15 and I’ve been on the phone to various council departments since 11.30. I’ve got two more calls still to do. I went back to Steven’s first thing this morning to sort him out for my absence the rest of the day. If I’d stayed, I wouldn’t have had the time to make those calls, so decided to pay the support worker to cover the three hours this afternoon. Steven is bemused and still trying to work out what is going on. I sorted out the CDs, so the support worker can do the Wednesday disco tape instead of me. “Dad doesn’t do Tuesday tape anymore. Dad’s not Steven Neary’s Tuesday friend anymore”. He’s half right. I think I’ve only done the Tuesday tape twice since we got the keys to the new house. Quality, shared time sacrificed for the pleasure of bureaucratic personalisation. Whilst I was there, I did the support workers’ wages. I’ve queued them up until the end of December so at least I can be spared that job throughout Christmas. There’s still the November Personal Budget audit forms to do but I didn’t have the stamina for that today.

Back at my flat, the first call was to the Council Tax department. Despite getting Council Tax Benefit, Steven has received a bill for £80.55 to the end of the year. This struck me as odd because I’d paid his council tax on the old house until the end of the financial year and the banding on the new house is lower. If anything, he should be in credit. At first, the guy said he was unable to check the account on the old house but later confirmed that the credit had been transfered to the new address. So, what is this £80.55, I kept asking. Eventually, he is forced to admit to the big rip off. Steven is not getting the disabled discount at his new address. Their policy is, when someone moves, the disability marker is set to zero and the person has to reapply for the discount. Only, they don’t tell people. They just send you a bill for the full non discounted charge.

This isn’t a mistake or incompetence. This is a committee approved policy. A policy designed to get money out of disabled people when they really should be helped via the discount scheme. Hillingdon has form on this. Exactly the same thing happened back in April when Steven suddenly received a large bill for his care charges for 2016/17. The previous two years of receiving a personal budget, he wasn’t charged at all. After much stress and deep digging, it turned out that the council had a policy that at the start of each financial year, they reset the amount of disability related expenditure a person has to zero. Expenditure ignored, they are free to bump up the charges people are expected to contribute towards “care services”. But they don’t tell people. They just send out a bill and hope that people aren’t inquisitive or suitably threatened and pay up.

This is two different departments, the council tax department and the social care department. It suggests that a committee must have looked across the board at ways of ripping disabled people off. From every department the disabled person has to have contact with. I don’t know about you, but that is so ethically and morally bankrupt, it is shameful.

I could have been too busy, or too tired, or not alert enough and just paid up. I suspect hundreds of ratepayers do because they don’t know any different. Ironically, having finally got the council tax bloke to acknowledge the scam, sorting it out sounds reasonably straightforward. Steven doesn’t have to reapply for the disabled discount. And rather than owing £80.55, he is probably due a refund.

What do you do? If I was still just ” Dad” and got on with bopping away with Steven to a soundtrack of UB40 today, this would never have come to light and gotten sorted. Fun and loving engagement had to give way to project management.

Its not over. We normally watch Gladiators together after taping. It’s the 1993 semi final today and Helen Williams hurting her back after falling from Hang Tough. But I’ve had to pass that over to Des as I’ve still got the best part of two hours phone calls to do – the tenancy appeal, the damp and why Steven has an odd additional charge on his rent account.

Dad can’t sort that. Mr Project Manager might.

Black Marks

Forgive the incoherence but just need to get this off my chest. I’m fucking furious.

I got back to Steven’s new house this morning after having a few days away to recharge my batteries.

I just went into his bedroom to put some washing away and noticed that the damp patch on his wall had grown. I pulled out his bed to see if it had spread and the whole of the wall was black and wet. His bed base was also damp.

This is seven weeks.

The council aren’t due to sort out the brickwork until 28th. Goodness knows what state it will be in by then.

They must have known before we moved in. That level of damp doesn’t suddenly appear in a few weeks.

I’ve spent £6K on trying to get the house habitable and nice for Steven and then this!

We’ve moved the bed to the other side of the room but that doesn’t feel very satisfactory.

He may have to move into my room and I’ll go into his.

This is why I had to take a break. The relentless, shit of dealing with the Local Authority.

Tomorrow is Monday again. My day off. Another day off spent phoning the council.

I am damp with rage.


I’ve had to admit defeat. The fist of failure in the face. I’ve gone away for a few days. After this post, no internet, no phone until I can get my head back together.

It’s the new house. It feels like the Personal Budget all over again. I’ve written before how great personalisation is for Steven, for the support workers, for the council but a total nightmare for me. With all the bureaucracy involved in running a personal budget, my relationship with Steven and others has been seriously affected. I have no time. Since the move, it has felt like Groundhog Day. Fantastic for Steven as he loves the house and the close proximity to his family. But for me, there are so many problems with the house that need sorting, I’ve just added another layer of bureaucracy to my bow.

Do you remember that scene in Fawlty Towers where Basil is trying to get Manuel to understand and says despairingly, “I could spend the rest of my life having this conversation”? That’s my life at the moment. Monday was meant to be a peaceful day off. Stupid me, I actually started looking forward to it. In the event, I spent three hours on the phone to the council or one of their many sub contractors. The boiler continues to leak, which causes the water pressure to drop and then the heating and hot water pack up. This has happened every few days since we moved in. I can guess the details of the contract the boiler company has with the council – they get paid per call out. So to them, it is advantageous that we’ve had eight different engineers in six weeks. But not to us.

After the boiler, it was chasing up the council to see what they’re doing about the damp in Steven’s bedroom and the bathroom. Answer is nothing until 28th November.

So on Monday, after squeezing in a client in distress, doing the support workers’ wages and trying to sort out Steven’s council tax, it was 6pm before I noticed. I started at 9.30. My day of switching off.

I’ve developed an allergic reaction to the new carpet. I understand the symbolism and irony in that. I don’t have a leg to stand on.

With the advent of the Christmas adverts on the telly, Steven’s December anxiety has kicked in early. Yesterday, in the space of two hours, I must have repeated the timetable for 1st December over 50 times. Whereas this repetition usually eventually reassures Steven and he calms down, my head is currently mush and I kept getting things in the wrong order. With a clear head, I know that Slade appear before Jonah Louie on the CD we play whilst putting up the Christmas tree. Yesterday, I couldn’t remember the order and the anxiety cranked up. In the midst of this, the ninth boiler man turned up and I fruitlessly tried to juggle with dealing with him and telling Steven that Kirsty & The Pogues are track seven.

Something had to give. Whilst the support worker was doing Steven’s shower, I packed an overnight bag and sneaked out.

Normal service might be resumed as soon as possible.

Meeting Your Heroes

For the past four years, I’ve travelled up to Birmingham twice a year to tell the Get Steven Home story at Birmingham university on the penultimate day of the Best Interests Assessors training course. It’s always a good gig. The audience are always appreciative, I get to stay at the Quaker’s baroque B&B and Wendy, the trainer, always has a treat up her sleeve. (Remember last year’s trip to the Selly Oak ladies’ circle dancing group?)

On Thursday, I got an email checking I’m still okay for the latest cohort on the 25th. And then Wendy drops the bombshell that at the next session next March, the other speaker will be….. Justice Peter Jackson. I’m welling up and my knees are shaking just typing that sentence! What do you say to the man who changed your life? In the emails, he’s asked to be the second speaker late morning, so that will mean embarrassingly, he’s likely to arrive at the tail end of my talk, when I’m talking about him! Of course I want to speak to him, but….

I’ve got form on this. The first time I was ever asked to speak publically about our case was at a legal conference in December 2011. The keynote speaker was Sir James Munby. After his talk, Sir James sat in the audience. I did my speach and the MC asked if anyone had any questions. Sir James put up his hand and said, “Mr Neary. The deprivation of liberty Safeguards. A good thing or a bad thing?” I think my reply was along the lines of: ” Er. Erm. Wibblywobbly. Er. Erm. Yes. Erm. Binkybonks. Er. Erm. Good thing Sir”.

I blame 1974 for this complete mental and social collapse when encountering my heroes. I was standing at a bus stop in Hayes, having just spent my pocket money on Teenage Rampage. Across the road, a limousine pulled up, a chauffeur with an umbrella got out and escorted Steve Priest from The Sweet into the cafe. With unexpected bravado, I ran across the road and followed Mr Priest into the cafe. Me and him were the only two customers. I sat down at the table opposite him and with little pocket money left, ordered a Fanta. I stared at Steve for 20 minutes as he ate his breakfast, averting my stare when he glanced at me. When he came to pay the waitress, he said to her, “get that lad a bacon sandwich love” and as he left, he looked at me and said, “go well son”. I left a few minutes later, holding my unsigned copy of the great man’s latest single.

My mother had no such problems. I found her autograph book once. It was packed with signatures. Rather touchingly, as her name was Beryl, the first page was reserved for famous Beryl’s. There was Beryl Gray (the dancer) and Beryl Burton (the cyclist). No Ms Bainbridge and disappointingly to 10 year old me, no Beryl the Peril. Once a year, my mum and a couple of friends would go up to London to take in a show. Usually a musical, sometimes the Talk of the Town. My mum was a very funny woman but I never saw her as a giddy fangirl, hanging around stage doors but she must have been. Her collection of autographs included Judy Garland, Burl Ives and Frank Ifield.

Sometimes the meeting your hero thing works in reverse. In the early eighties I worked at the DHSS in Southall. One of my best mates there was Gag. We went on double dates together, lunchtime drinks together. A good pal. Then in 1982, he started playing for Southall FC. I had supported Southall since my cousin took me there in the mid 60s. I was avid. But it was a strange experience, cheering on my mate, who on Monday morning I’d be sitting next to at work. Incidentally, Gag did something brilliant just before I left the DHSS. He hired the ground for a day and arranged a match against Ealing DHSS. As we were preparing to leave the changing rooms, he threw me the ball and said, “you’re the captain for the day”. Even though I was substituted at half time, it was still one of the favourite days of my life.

I’ve always been painfully shy in social situations. I can address a roomful of 1000 people no problem. But at the finger buffet afterwards… Actually, you won’t find me at the finger buffet afterwards. I’ll be out by the bins, having an escaping fag. I tend to freeze and all sorts of gibberish comes out. The first time I met Sara Ryan, I asked her if she was Val Doonican’s daughter, for christsakes. I’m getting better but I can quickly revert to that teenager in the café in Hayes.

Since getting the email on Thursday, I’ve been getting choked up thinking about meeting Justice Jackson. If it was a film of Get Steven Home, it would be the perfect final scene. Also, I’ve been observing Steven going about his business and the ” what ifs?” kick in big time. Taking some spare milk over to Uncle Wayne’s, popping out to buy some Frazzles, sorting his bag out ready for swimming, engaging me in an hour long conversation about the hits of Wham, cooking his own sausage and spaghetti hoops. None of these things he’s be able to do if he had been sent to the hospital in Wales.

I think I’ve only got one thing I want to say to Justice Jackson – “Thank you Sir. You saved Steven’s life”.