It was two years ago next week that I was called urgently to a meeting by Hillingdon, where they informed me that they were stopping my housing benefit. Despite paying the benefit for three years previously, they admitted they had decided to reinterpret the regulations and although there had been no change in my circumstances, they were withdrawing the HB with immediate effect. They acknowledged that their decision left me and Steven in a hideous position. Their review came three weeks after the High Court ordered Hillingdon to pay Steven damages for his illegal detainment in 2010. I don’t believe the timing was a coincidence. The option they wanted me to take was to transfer the tenancy into Steven’s name, making him liable for the rent. But as he now had the damages, he also wouldnt be entitled to housing benefit, so would have used up all the compensation Hillingdon were forced to pay him and pay it back to Hillingdon by way of rent. Their plan seemed designed to cause as much stress and distress as possible.
And it worked. We had a whole year from September 2012 to October 2013 with the threat of homelessness hanging over us. I found the uncertainty unbearable. Steven, who cannot cope with uncertainty at the best of times, was a wreck – having many restless nights as he cried himself to sleep. He would tear at his clothes until they were unwearable. And he was constantly packing his important possessions into boxes and taking them back out again. He was understandably distressed that I couldn’t offer him any certain response to his queries about where he was going to live. This, of course, reactivated all his old anxiety about being taken back to the Unit where he was held in 2010. There was also the humiliation of the appeal tribunal. I turned up unrepresented as I didn’t qualify for legal aid to find Hillingdon had hired a top notch barrister. A barrister for a housing benefit appeal tribunal! That is unheard of. I lost the appeal (the further appeal to the Upper Tier tribunal is still pending over one year on).
The press and media picked up on the story and suddenly I found myself back on the Victoria Derbyshire show. describing our plight. Then out of the blue, two weeks before we were due to be evicted, the housing manager phoned me to say that they were prepared to accept a homeless application from Steven and whilst we waited for a property to become available, he did a dodgy deal with our landlady to enable us to stay on there. A small relief but the flat had become a hellhole. The landlady had long since switched off so nothing got repaired for months. There were no promises, so I fully expected to be there until the end of 2013.
In mid October the same manager contacted me. They had found a two bedroom house in Cowley and they wanted me to view it that day. Cowley! Steven’s favourite person, Uncle Wayne, lives just down the road so I knew that would score several points for Steven. So on 1st November 2013 we moved in. It is very much Steven’s house. If you walked into the living room, you wouldnt guess that I lived there too. I designed the room specifically for Steven, so all his important belongings are close to hand in that room – his DVDs and videos, his CDs, his books, his model figures, his photo albums (my books and dvds are in a cupboard in my bedroom). And the walls are Steven’s – his Mr Bean poster, his Abba calender, his print of Whistlers Mother, the painting that his friend from Southlands, Raj painted for him. Steven loves his home. I have never known him more settled than at any time in his life. But it’s not my home. In keeping with the attitude of social care, I am not recognised at all. On the housing application, the tenancy agreement, the care plan, there is no mention of me as “father” living there – I am in the forms as “live in carer”. If a stranger looked at those forms, they would assume I was just a member of Steven’s care team like all the other support workers. Nevertheless, I like the house too and had settled myself to the idea that we would be there for the long term future.
And then in May my wife died. And the house that was our old family home and that Hillingdon had used as their weapon to get their revenge, suddenly became solely mine. I knew instantly that I didn’t want to move us back there. Steven doesn’t really cope well with “going back”. I remember his terrible upset when we took him back to see his foster family many years ago. When Steven closes a book, it is slammed shut. So, the sensible thing to do seemed to be to sell the house and buy a new house for me and Steven. But as the days passed, that didn’t feel right either. Even if I found somewhere close to where we currently live, I would be still be taking him out of the housing loop that it had taken so long to get him into. As Steven’s court appointed deputy, I had logged a best interests statement with the Office of the Public Guardian, basically saying that in the event of my death, I believe it is in Steven’s best interests to remain in his own home with live-in support. I know that when I’m dead, Hillingdon can change that any time they like but it feels safer for Steven to be established in his own home, rather than living with me, in my home.
The day after Julie’s funeral I awoke with a crazy idea. I’d sell the house and buy somewhere for me. Obviously I wouldnt be living there full time as I am still Steven’s “live in carer” but I could use it for a couple of respite nights each week. And I could use it for my consulting room for my counselling work, saving a fortune on the rent I pay each month. The more people I told, the more it seemed like a good idea.
The old house sold remarkably quickly. The estate agent took the photos on a Thursday, held an open day on the Saturday and phoned me on the Monday with a list of offers. The contracts should be signed by the end of next week. I havent hurried looking for somewhere for me because I wanted it to be just right. On Wednesday afternoon, I saw a new property on Zoopla, about five minutes from where we live. I arranged a viewing for the next day. It was fabulous – newly decorated, new carpets throughout and a new kitchen with all the major white goods. But for me, the major attraction was the view out of both the living room and the two bedrooms – the river. With barges. And ducks. And swans. And people fishing. What a great view for a counselling session. Or when I’m sitting at my desk writing this blog. I made an offer there and then and today I was told that the offer has been accepted. Once all the legal stuff has been done and I’ve got the place furnished, I’ll probably be ready to move in a year to the day that we moved to Cowley and became Cowley men.
As I said, I feel that Hillingdon wanted to cause as much upset as they possibly could two years ago. They’d had that damming High Court judgement, slated in the press and then had to cough up damages. We couldn’t be allowed to get away with that. But unfactored into the plan was Steven falling in love with his new home and being calmer than ever. And they couldn’t forsee the terrible death of Julie and how that would leave me with some choices and the wherewithall to realise those choices.
I could almost thank them. And then I remember a meeting to discuss “Steven’s situation” with housing, housing benefit and social care. At one point, I sat with my head in my hands, sobbing with the fear of being homeless. And then I looked up and the social worker’s manager was smiling.
I booked a night away yesterday. Getting more than 5 hours sleep, once a week has become quite important to me.
On the way to the hotel I bumped into an old work colleague. We chatted about old times for a while and then I told her about my plan for the day. I was going to dump my bags in the room, go for a swim, watch an episode of Lewis, have a meal, long soak in the bath and then another episode of Lewis whilst lying in bed. Plus a promise to phone Steven at 4pm to talk about the Abba video he was planning to watch and another call at 8.30 to run through the agenda for Tuesday.
My friend listened to all this and said: “Oh, what a lovely pampering day. I’m so jealous”.
I’m not sure why but this statement pressed a button. I should have smiled and moved on. Instead, I found myself launching into:
” Hang on a minute. You can have more than 5 minutes in the bath any day you like. You can watch a TV programme all the way through any day you like. You can eat a meal before it goes cold any day you like. You can have 7 hours sleep every day if you like. This is not pampering – this is just joining the rest of the human race for one day every fortnight”.
It was unfair of me and she hurried on her way ( I did text her later to apologize). I guess it set off my shadow side of being a carer. Selflessness flips to resentment.
The care world is content to frame things that way though. All the big carers organizations talk about “pampering days” as a treat – a well earned reward for your sacrifice. So they push for pampering days once a year. Once a year! To have a massage, or go for a cream tea, or a horse riding afternoon. And when you have your carers assessment, the LA will do exactly the same thing. They can get out of their statutory duties if they dangle a trip to the beach in front of you.
My favorite part of a night away is the quiet. I don’t have to talk or listen for several hours and its lovely. Its good to be able to follow the plot of Lewis without interruption. And its good to have more than 5 minutes in the bath before I have to discuss the career of Prunella Scales. But its the silence that is the biggest treat.
Shattered from Cowley calling base.
It’s four months since we started to reduce Steven’s medication; three months since we stopped the anti-psychotics completely. I did reintroduce a miniscule dose for a week whilst Steven struggled to deal with the death of his mother. The consequences of stopping them have confirmed the thoughts I had all the time Steven was taking them – they weren’t having any positive benefit at all. His anxiety, which stems from his autism condition is exactly the same pre, during and post medication. An unexpected change is still likely to induce a meltdown and the nature of the meltdowns hasn’t altered at all. In the first two months Steven lost over 4 stone in weight. Disappointingly, that has levelled out and although his weight is still dropping, it is just the odd pound or two per week (and sometimes goes up again). The one downside from stopping the meds is the lack of sleep. The natural, ebullient Steven has returned and I’d forgotten how pre-meds, he needed so little sleep. This week, we got 1 1/2 hours on Wednesday night, four hours on Thursday night and an hour last night. I only had one client at work this morning but I cancelled the session as I knew I was in no fit state to counsel someone. The lack of sleep doesnt seem to effect Steven – he’s been as bouncy and Tiggerlike as usual today. I’m on my knees. I went back to bed this morning after the support worker arrived at 7am and slept until 10.45am. But it doesn’t feel anywhere near enough.
It makes me question again, why the hell did he go on medication in the first place. It was towards the end of 2007 and he was struggling with the impending end of his schooldays. He had become pre-occupied with all the other students that had left in the years before and Steven had convincved himself that they’d all died. “Dad – don’t want to die when Moorcroft is all finished”. The anxiety of this developmental crisis continued and eventually, the GP and pyschologist put him on rhisperidone. It was a small dose and although it had an immediate calming effect, it didn’t last long. When Steven went into the Unit in 2009, they doubled the dose within days of his admission and he’s been on the same heavy dose until May this year. But nobody has ever diagnosed a mental health problem with Steven – quite the contrary. When he has his six monthly check ups with the psychiatrist, the doctor makes a point in his reports of pointing out the lack of mental health symptoms. That didn’t stop Hillingdon wanting to use a mental health section to get their way and move him to the hospital in Wales.
Since 2010, I’ve learned how common drugging autistic people is and how LAs will use the Mental Health Act to trump all other legislation and get their own way. They refuse to provide a decent care package for the person in their own home/community – and instead, send them off to an assessment and treatment unit or psychiatric unit – put them under section – drug them to the eyeballs and leave them there to rot. Problem solved. Except they’ve created a total illusion and used what is meant to be a supportive piece of legislation to add credence to their illusion. I break out in a cold sweat when I think of the task ahead for the #LBBill and how we address the abuse of the MHA. The latest stats on why people are still trapped in ATUs cites “clinical reasons” as the main reason for the lack of discharge dates and planning. This seems like a convenient catch all to me.
Yesterday, an announcment was made by Langland securities of its plan to build a hospital in Wales (there’s irony). The USP of the bid is that it will be an autism specific hospital; and will cater for up to 100 patients, employing 400 staff. The report is here: http://www.dailypost.co.uk/news/health/mostyn-site-chosen-unique-multi-million-7649247#.U_YcWVpcuBo.facebook
Look at those pictures. Read the blurb (“in symmetry with the local environment”). Is that really what’s needed? No, surely not. It looks like another Winterbourne View to me. The brilliant Nicola Bartzis has been trying to do some deep diving into the place and it’s like trying to grip sand. The Health company who will run the facility, Earlswood Healthcare are registered at the same address as Langland Securities. The spokesperson for Earlswood Healthcare is one Andrea Dishman. In 2012, Andrea was the spokesperson for The Trevor Price Partnership who had an identical bid to build a residential placement on the site refused. Hospital? Residential? It’s all the same to the money men. Also in the equation are a company called The Options Group, who run a residential school for the autistic on the same site. You can bet your bottom dollar that behind all this is a private equity firm with links to big pharma.
It’s the complete antithesis of #LBBill. Despite the gloss, it’s an institution. Despite the spin, it is not about keeping it local. Jobs perhaps may be local but we all know that if it gets the go ahead, people with autism from across the country will be sent there. It stinks. Let’s create a mental health problem out of some of the most vulnerable people in our society, so the arsewipe Fat Cats can trouser shed loads of money.
Everyone. Please everyone. Sign up for the #LBBill. Because very soon, they will be more of the Earlswoods of this world, and it will be too late to stop them.
I read two updates today from two concerned mothers, both with children stuck in unsuitable placements.
The first, from Helen Ashby, described her son Dave’s distress yesterday. Dave has autism and downs syndrome and for him routine is vitally important. He likes to plan ahead and to be reassured about future events. Yesterday, at his placment (I hate that word) he was asking for reassurance about what he would be having for his next meal and who would be supporting him on his next outing. The staff couldn’t answer him as the rotas were locked in the office and nobody had a key! Cue an evening of increased anxiety and the possibility of a meltdown.
I’ve written before about the dreadful case of Claire Dyer, trapped in an assessment and treatment in Brighton. She has only been there three weeks after being moved by the local Health Board before her family had a chance to say goodbye. Each update from Claire’s mother is beyond sad. The Unit won’t allow to Claire to have her IPad and haven’t set up Skype, so she is unable to have contact with her deaf sister. The family are only allowed to visit for two hours a week and then have the indiginity of a staff member sitting in the room for the entire visit. Today, Cath Dyer described a call from Claire. Like Dave and many autistic people, food and mealtimes form an important foundation stone to the day. On Sunday, Claire had requested a cheese and pickle sandwich. When the time came, the staff served up a cheese and pickle baguette. This set off a meltdown. To be expected in an autistic person when the unexpected happens. The hospital’s response to the meltdown was to cancel her “ground leave” for a week. Ground leave only reinforces the prison image for me. And what good do they expect that to do. How can you be running the Race For Life one week and then three weeks later be detained in a room with only a TV or colouring book to occupy yourself because you are forbidden from going outside (we’re not even talking about going off into town here – she cannot even go outside into the hospital grounds).
There’s a massive gulf in what is permissable, depending on what side of the fence you’re on. If Steven had a meltdown and I subsequently kept him indoors for a week, this would be a safeguarding issue. I would be under the microscope and would , quite rightly be held to account for my actions. However, if I’m a professional working in an assessment and treatment unit, I can bring about a major restriction to someone’s liberty. All in the name of a behaviour modification programe. There seems to me to be a very fine line between a safeguarding incident and a strategy to modify someon’e behaviour.
This is all very familiar from Steven’s time in the Unit. When someone’s autism is denied, then I just see a disaster waiting to happen. Arrogant professionals believe they can change a behaviour that their environment and lack of acknowledgement has created in the first place. Common autistic traits are dismissed as willful behaviour and worse, become the focus of medical change programmes. It’s a Kafka nightmare. The big secret about assessment and treatment units is that assessment and treatment doesn’t actually take place there. They are cells – holding pens because local commissioners refuse to put a person before profits. They are the source of enormous income for the providers, usually with some murky private equity firm in the background. And to sustain this huge lie, Claire’s distress at getting a cheese and pickle baguette is turned into the raison d’etre for their existence.
I really struggle to see how the professionals making these decisions can sail straight past some real basic stuff. Every autistic person I know needs the reassurance of routine. As long as the basis of a routine is in place, much of their anxiety is kept at bay. Take that away and the anxiety of living becomes unbearable. Steven has three charts on the living room wall. They are the most improtant things to helping him manage his day. The first chart has the photos of who is working with Steven that day. Steven takes charge of this when the support staff arrive in the morning. On this chart he also adds a photo of wherever he is going that day. The second chart is the food chart for the day. Once again, one of Steven’s first jobs in the morning is to put up the photos for his lunch and tea and his packet of mid afternoon crisps. The third chart records what DVD/video Steven is watching after breakfast and what our viewing will be that evening. It’s the same every week (Monday: Top of The Pops, Tuesday: Men Behaving Badly, Wednesday: Mr Bean, Thursday: Gladiators, Friday: Fawlty Towers, Saturday: Camberwick Green, Sunday: Coronation Street). Sorting out his charts takes Steven about ten minutes each morning and he’ll refer to these charts throughout the day. It’s not obsessive. It’s not inappropriate. (Two of the charges that were thrown at Steven by the Unit). I’d far rather see him compile his charts than be dowsed in surpressing medication.
Where is the voice for the Claires and Daves? Mencap are cosily ensconced in the Bubb group. Today I learned that the NAS get a significant amount of funding from a company that runs the sort of units that the government keep saying they want to close down. The deeper I get into the #LBBill, the more I learn about the politics of disability and the bewildering layers of self interest. And whilst the egos battle for supremecy, Dave doesn’t know what he’s having for lunch today because a rota is locked away. We cannot wait for the commissioners to spring Claire from her sentence – they are too caught up in block contracts and social capital. We certainly can’t wait for the providers to do something – they don’t want to lose their enormous profits. We cannot wait for the big charities to do something – their interests were conflicted long ago.
Now, if you’ll excuse me, I have to go. It’s Tuesday and Martin Clunes and Neil Morrisey beckon. It’s not Claire and Dave behaving badly – it’s the people charged with providing their care.
Another of those tense, awkward moments looming. Whilst Steven was away in 2010, the staff at the Unit introduced him to a day service run by the positive behaviour support team and he has been going there every Friday since. I’ve writen before about how nervous his four hours there each week leaves me. The staff at the day centre are the same as the ones at the Unit and I fear Steven’s actions being misinterpreted and the whole nightmare of 2010 starting up again. There are four other regular service users who go and Steven doesn’t really interact with any of them, so anything can happen and each week, I breathe a huge sigh of relief when he gets home and the support workers report a trouble free day. There is nothing to do at the Centre – I’m not even sure what its purpose is. Steven takes his ingredients for his pepperoni pizza there every week and makes it sometime during the day. But the rest of the time, he sits and watches the TV. There are jigsaws. And colouring books, that I wouldn’t say were old, but when I say that Steven asked what colour to do Alma Cogan’s hair, you’ll get the picture.
For three weeks running, the cab has arrived to take Steven to the centre and each time he has chosen to stay at home. The support workers try to persuade him but Steven is quite adamant and once the empty cab drives off, he gets on with the day that he has obviously planned. On Friday, he started by pulling his chair up to the CD player and put on Andy Williams’ greatest hits. An hour later, he went out in the kitchen and made his pizza and then got the support worker to help him make a corned beef sandwich. Steven then announced: “want to go to the pub for orange juice, some minstrels and Erasure on the jukebox”. Off they went. And when they returned, Steven chose an old Brookside video and watched that until it was time for tea and swimming. Sounded like a packed, enjoyable day full of positive behaviour without the support of the specialist positive behaviour team.
Then I worry. Suppose Steven decides he doesn’t want to go back to the centre (I wouldnt blame him). Would I be congruent when the PBST ask why? I just know that it will be very tricky and very exposing to announce Steven is giving up the centre because he gets bored.
Then I race on and speculate what would happen if all the service users follow Steven’s lead and decide to give the place a miss. That would be extremely challenging. The Council see the place and the PBST as one of the stars in its crown. A lot of jobs are tied up in keeping the star alive. What would happen to all those people if everyone voted with their feet?
Perhaops this is why “choice” in the social care world always feels nothing of the sort. Steven has already made an independent choice and chosen Andy Williams over a Pingu jigsaw. But it’s not really a choice any of the professionals would want him to make. In doing precisley the thing that the council trumpets (choice and independence), Steven ratches up the tension. Sod it.
I need a blindfold on my journey from home to work. After yesterday in the cafe, I witnessed a similar event today. And once again, my mind was racing, painting a whole backstory. The weekly shop took less time than usual so I stopped off in a coffee shop. Outside a young woman was having a serious meltdown. Her two carers were trying to coax her into various shops. They went into a charity shop but reappeared a few seconds later. There was a real commotion when they were in the newsagents. The carers stopped dead outside the estate agents, trying to interest her in the properties on display in the window. Nothing worked. It was very painful to watch. It was all so ……. meaningless.
I’m no expert but I do know that most people with autism feel safest with a routine. Planning is important – spontaneity is dodgy. (Last week, I brought some hot dog rolls, thinking it would make a nice surprise for Sundays tea. It completely threw Steven. Even though he’s partial to a hot dog, we have cheese on toast for Sunday tea. The unplanned change was too much for him. I’d dropped a clanger). A morning of unfocused, unplanned meandering around the shops is tricky for most autistic people. Here my fantasy kicked in – the staff probably arrived on shift. They didn’t know which of the independent living tenants they’d be working with that day. Nobody is going to ask the woman herself what shed like to day with her day. Perhaps one of the support workers needed to go to the post office next door to the charity shop (it happens). Who knows?
Steven’s week is meticulously planned. At 9pm every day we run through everything that is going to happen the next day. We repeat the process, the next morning after breakfast. For a taster, here’s today’s:
× Watch Gladiators video with Michael.
× Dad will go to Tescos for the shopping
× Alan will come & put trunks and towel in the bag and go to Lloyd’s swimming pool for a big swim
× Come home and have spaghetti hoops and orange juice.
× Take clothes out of washing machine & hang them up
× Have a marvellous musical montage with the Lightning Seeds.
× Watch Countdown & Deal or No Deal
× Dad will be home
× Michael will go and get our lovely cod and chips
× Michael will go home and Steven will have his bath
× Have lovely cold milk and raisons
× Alan will go home & do music videos and DVDs with Dad
× Speak to Uncle Wayne on the phone
× Have a blackcurrant Chewitt
× Watch Fawlty Towers with Dad
× Go to bed
As you can see its pretty detailed but is important to keep anxiety at bay. It requires patience and a memory like an elephant.
When I see scenes like in the cafe yesterday or the estate agents today, I become very scared for Stevens future. When I’m no longer around, who will be interested enough to plan his day with him? What will happen when someone takes him out for a meaningless walk? Who will Steven be able to discuss Ian Brodie’s career with?
Perhaps I should just wear a permanent blindfold.
With the #LBBill gathering momentum, I find myself constantly returning to the question, “what is independent living”? I’ve read tons on the subject but there seems to be an inherent conflict in trying to define it. Surely, one’s idea of independence is a purely subjective thing. Can we come up with an overarching definition that will encompass everyone’s ideas about independence. What on earth do we do for people who are unable to communicate what independence means for them.
I get most of my cues about independence from Steven. I observe him going about his life and feel comfortable that his life is pretty independent. He is able to make choices, some he can verbalize, others need more effort and understanding of him to hear what he is trying to communicate. I know my MCA – its fine for him to make an unwise choice. Its also fine for him not to make a decision either.
So when I’m thinking about independent living, I tend to compare with Steven’s life, and that is probably unfair. I just did it on the way in to work. I wrote last week about the new block of supported living flats that one of Steven’s old schoolmates has moved into. I was sitting in a cafe having lunch when two support workers came in with Steven’s old friend and two other residents. Steven’s mate was unhappy about one of the other guys being there and kept saying: ” want him to go back to S House”. The other guy didn’t seem that fussed about being there but couldn’t leave because of the staff to resident ratio. It was tense.
I sat there dreaming up all sorts of fantasies. I was uneasy that everyone, residents and staff were referring to “S House”. It sounded like these self contained flats had suddenly become institutionalised. It felt like a house outing, arranged to fit around staff rotas. Does that accord with independent living? Supposing one of the three guys had wanted to do something different – would he have been able to or would there have been the staff to support him? My assumption, like Steven’s home life, is that each resident would have their own support. I didn’t expect support to be shared and activities arranged on a consensus. Do each of the residents have their own personal budget, or has the place been turned into a care home where all resources are pooled?
Here are two different scenarios with the same outcome and I honestly don’t know if one is okay and one is not.
1) A young autistic man lives at home with his family and has paid support during the week. The family decide to go out for Sunday lunch but the young guy wants to stay at home. He cannot stay home on his own, so the family decide he has to go with them.
2) A young autistic man lives in his own flat with live in support. He wants to have lunch at home but the man in the next door flat wants to go to McDonalds. There are not enough staff on duty to accommodate both, so the man has to go to McDonalds with his neighbor.
Of course, they are all just fantasies and I’ll never get an answer to them. Just made me realize that getting a Bill passed is one thing – making it work in practice is going to be much much harder.