I had a night away last night. It’s funny how over the past three months, my attitude to a respite night has completely changed. A Monday night off from caring used to be meeting up with friends, a few drinks and back home when the pubs shut. I guess it’s changed because Steven has been switched back on since he came off the medication – he needs much less sleep than when medicated and he talks incessantly – mostly to me with conversations that last hours about his favourite subjects – lookalikes, pop songs etc. So now, when I get a night off, I like to take myself away and have total peace and quiet. My days of painting the town red have gone and I’m now in bed by 10pm.
Tale 1. Last night I was sitting in the bar and saw an old friend. She is the mother of a guy who was at the same school as Steven, possibly two years above him. She told me about a mutual friend, whose daughter recently moved into the much lauded supported living scheme round our way. It got a lot of press interest and the council really sold the scheme to people and their families. Anyway, the friend’s daughter has been there since June and is getting increasingly concerned. There are between 25-30 flats in the block but only 12 staff at any given time to support the residents. My friend was telling me how her daughter, who prior to moving in was out and about every day of the week, can now only go out twice a week because there isn’t enough staff to cover. Also, the residents are expected to pool their personal budgets to do joint activities but even then, they are often cancelled due to lack of staff. As my friend said – “It’s the biggest con this year”. Coincidentally, on the way to the hotel I passed the land where the day centre used to be that my friend’s daughter used to attend. It is now a building site, building flats (for private sale – not for the disabled). The other sad thing about the place is that there is a small communal area that was presented as a place for people to get together when they had social events arranged. Now it seems, that residents are being herded into this space because there isn’t sufficient support to allow people to spend periods of time in their own flats. Such a shame.
2. Today, I was asked to speak at an event in a neighbouring borough about the experience of 2010/11. I got a cab from the hotel and it was one of Steven’s regular drivers. I had no idea where we were going but the driver reckoned he had been there several times. At one point, we seemed to drive straight past the community centre where I was giving the talk and the driver parked up a couple of streets away. I suddenly realised to my horror that he had brought me to the centre run by Hillingdon’s positive behaviour team. This is the place that Steven has recently decided he doesn’t want to go to anymore. One of the support workers told me last week that he’d heard from his mole that the place is closing in December – another potentially useful resource down the pan. As I sat in the car whilst the driver consulted his sat nav – one of my adversaries from 2010 came out of the building. I slid down in my seat. For one, I didn’t want to engage in pleasantries. And also, how might I respond to the question – “What are you doing around here Mark?” It would have been awkward to say that I was doing a Q&A about how you fucked Steven and me over four years ago. It was a good morning and reinforces the hope I have that there are some damn good people working in social care and all they need is to be liberated from the strangulating system.
3. After the talk, I picked up a message from social services responding to my request for increased respite when I get the flat. Ironically, I’d been following a discussion on Twitter about Planet social care’s attitude to carers and sleep. It’s not an obvious human right but the expectations of carers to go night after night without sleep is totally ridiculous. The subject always gets turned into “short breaks for carers”, which in translation, means a couple of nights away a year. A year! Sleep deprivation is often used as a torture tool but it is quite permissible to expect carers to get by on no or 1 or 2 hours sleep a night. The message informed me that they would have to do completely new assessments – a new FACS assessment for Steven and a new carers assessment for me. Resulting in a new care plan and new personal budget. The message ended strangely – asking me if I’d kept up all the records for the personal budget that I’d been asked to keep. It ended: “These things weigh heavily when Panel are considering a change to a personal budget”. I didn’t understand that but if felt vaguely threatening. Of course, I’ve kept records – it was spelt out to me in no uncertain terms by the direct payments manager that they could withdraw the budget if I didn’t fulfil their expectations of me. And the quality of Steven’s life is at stake, so as much as it sticks in my throat, I have no choice but to be a good, obedient little boy.
That’s been my last 48 hours. I think it shows how saturating the social care world can be when you have to avail yourself of its services. One of the questions this morning was about my ongoing relationship with Hillingdon. I said that I would just love to be left to get on with things. To be trusted. To have acknowledged that I am really trying hard to do the best for Steven. As the three stories show – most of the time, that is much easier said than done.
One step forwards – 888 steps back.
Have a read of this announcement to build a new hospital for people with mental health, autism or learning difficulties in Northampton. It is on the site of the old Northampton Lunatic Asylum.
So, so much wrong with it, it’s hard to know where to start. The CEO of St Andrews (the charity!!!! behind the project) says:
“Our new building will help to meet the increasing demand for mental health services for young people across the country”.
At the very same time that all the great and the good of the disability world are talking about “keeping it local” and helping people stay and build quality lives in their own communities, along comes a new build that is going to be looking for people all over the country.
I have previous with St Andrews. It was one of the places that Hillingdon accepted a tender from back in 2010 for providing a service for Steven. It was to be based at their existing Northampton hospital. I phoned them to discuss the tender and before I could get a word in edgeways, the woman launched into a sales pitch that would put Katrina Pearcey to shame. I could understand about half of what she said – the rest was corporate, PR bollocks. Funnily enough, after I told her that Steven’s case was due to come to court and that there was a huge media interest in his situation, she cooled considerably. And that was the last we heard from Northampton. But reading the press article today and looking at St Andrews website (have a look yourself but have a stiff drink to hand), I fantasise what would have happened to Steven if he had gone there. He would probably still be there, four years later, in a living hell.
There are three words in the release that chill me and leave me furious at the same time. Read this paragraph -
“It will provide care to young people from across the United Kingdom, and alongside 110 residential beds, it will include a school, sports and therapy areas, and a number of landscaped courtyards.”
110 Residential Beds
All we need to know is in those three words. A home is not defined by the number of its beds. Hospitals perhaps but that has nothing to do with anything “residential”. It does mean that 110 people are likely to end up there, forgotten, open to abuse and with no acknowledgement of the importance of person centred care. They will be patients forever – just like the many patients of the old Northampton lunatic asylum. The CEO talks about a “safe environment” but I don’t see how he can make that claim in an institution so large. In scale, it will be similar to a Sainsbury’s warehouse.
And it’s a charity. I wonder what Sir Stephen Bubb and his breakfast club make of that. When they talk about the 3rd sector providing residential placements with block contracts, is this the kind of thing he has in mind? It sure isn’t hell, the kind of thing that most people would have in mind as a home for the most vulnerable people in society.
Do you think it’s possible to mug an MP and get the #LBBill passed next week? It can’t come soon enough to stop monstrosities like this making obscene amounts of money out of our sons and daughters and family members. If you visit the St Andrews website check out the salaries of the top bods – and weep. My son and your daughter’s life is being manipulated to fund these fat cats. My son and your daughter’s normal autistic response to a life experience is being pathologised with subsequent medication to enable unspeakable wages and bonuses.
Any commissioner planning to send one of their local people to St Andrews should hang their head in shame.
But they probably won’t.
Yesterday was a great day. It began with a trip up to Steve Broach’s chambers for a discussion on the #LBBill with Steve, Sara, George and Rich. I knew that I was breaking Steven’s normal Monday routine, so I booked a support worker to do an overnight on Sunday to deal with any fallout in the morning. I managed to get out of the house about 7am and was at Grays Inn at 8.30. For a 10.30 meeting!
We covered an awful lot of ground in the meeting. It started with a “hair standing up on the back of the neck” moment when Sara unveiled the LB quilt. It is incredible. And it kind of set the tone for the meeting. Or at least reminded us how to go about things. The #LBBill isn’t an organisation. Or a concordat. Or a group even. It is a movement, where as many voices as possible can be heard. Whatever it is, I don’t like to take it apart to understand it – I think it’s best to just go along with the ride.
The draft Bill is really shaping up and should be ready to go out for further debate in the next couple of weeks. Steve has already blogged about this but a quick summary of the key points of the draft Bill so far:
1. A statutory requirement that any placement for a disabled person is the most appropriate to meet their needs. This would obviously include having the wishes of the disabled person and their family as the main driver. Other factors would include keeping people in their local area (if that is what they want) and the need to live as part of a local community. There would a specific duty that is enforceable in court. So, if the disabled person or their family felt that the public body was not taking into account all the relevant factors, or had contrived a decision as to what is the most appropriate place, they could bring the matter to court.
2. A statutory requirement that if the public body wanted to place the person in a residential placement, they would have to get approval from the court, if there is disagreement with the disabled person or the family. Hopefully, this would prevent those situations where a person is suddenly uprooted from their home and moved to residential placements and then the family have a long fight to get their family member back home. This requirement turns the current way of doing things on it’s head – now it is down to the public body to make the case for moving someone. This will be the “sign off” duty.
3. A general duty to make provision for community based living and support for people. This would push public bodies to be more transparent about their provision (or what they are willing to provide). Obviously, this follows on from points 1 & 2 and would demand more honesty if the public body was not prepared to provide the necessary conditions for the person to live in “the most appropriate place” for them. Basically, the public body would have to put in writing their reasons for not providing the support for the person in their own home of their choosing.
We also discussed changes to the MCA, primarily to give backing to points 1-3 above. As things stand at the moment, the wishes and feelings of the person are just one factor when professionals decide on someone’s best interests. Amending this so that the disabled person’s wishes and feelings are the “primary” consideration would mean the public body would have to put up a very strong case not to accord with the persons wishes and feelings. Likewise, the MCA currently states that family members must be consulted in best interest decisions “if it is practicable and appropriate”. This small clause often allows public bodies to exclude families completely. We’d like the MCA changed to say that family members have a right to be consulted about all best interests decisions. Tweeking the MCA to cover these two points would give a lot of power back to disabled people and their families.
One other factor that many people have brought up as important to the Bill is to address the way public bodies are increasingly using the Mental Health Act to get their own way and bypass the Mental Capacity Act. We keep hearing stories of people being moved miles away under section and that section is used as a trump card. It would be fabulous if we can cover this in the Bill and Steve is taking more advice from people with more experience in the MHA on how we can incorporate this into the Bill.
The rest of the meeting was taken up with discussions about setting up the #LBBill website – this should be ready in the next couple of week at the same time that the draft Bill is ready. That led us on to thinking about a launch for the BIll and we’ll be asking for more ideas over the next couple of weeks. So, the next big tasks for the LBBillers are to continue debating the content of the Bill, encourage as many people as possible to get behind the Bill, start to lobby your MPs to support the Bill and once the Draft is complete, to start thinking of more proactive ways that everyone can be involved in taking this forward.
It was a full on meeting and I felt knackered by the end of it. On the way to the Tube. Steven’s support worker phoned, apologising for interrupting the meeting but Steven was desperate to talk to me about something. Steven came on the phone and for about five minutes he couldn’t talk for laughing. The Housing association’s housing manager had just been round to inspect Steven’s house and at some point she mentioned she liked Mr Bean and asked Steven if he liked him as well. Steven showed her all his DVDs and she said “What a coincidence”. The support worker told me that Steven collapsed with laughter when she said this but nobody could work out why. Eventually Steven told me – “Lady was talking like Bill Hislop”. In case you’ve never seen it, Bill Hislop is Muriel’s father in Muriel’s Wedding. “What a coincidence” was Bill’s catchphrase in the film whenever his mistress turned up unexpectedly.
By 5pm, I arrived at the hotel for my respite night. I was so tired I laid down on the bed and half imagined I’d still be there at 7 the next morning. I did get myself down for dinner and had a simple feast of chicken and chips, rhubarb crumble and a pint of Guinness. It was lovely. I asked for the bill and was just about to tap in my pin number when I noticed the bill came to £177.35. Surely the pudding couldn’t be that over priced? Found out I’d been given the bill for the table of four next to me, who’d managed to get through several bottles of wine. Once the matter was sorted and feeling like I’d just paid for a bargain, I treated myself to another Guinness.
A day of bills.
I’ve been loving the hashtag stream – #explainafilmplotbadly
Here are some of my suggestions. Anyone who can get them all correct will get a cauliflower eclair send through the post (second class):
1. The bloke who goes around the world and Lady Downton hide a pig.
2. Lots of white collar workers beat each other up and Meat Loaf doesn’t sing.
3. Girl nicks red shoes off a dead woman and tries to find her way home
4. Liverpudlian woman reads a few books and cuts Michael Caine’s hair.
5. Man doesn’t jump off bridge and goes home to unwrap Christmas presents.
6. Two friends of Kenneth Williams shag a lot and then one kills the other.
7. 11 people get very pissed off with Henry Fonda.
8. Farmer hears voices and throw a ball at his Dad.
9. Woman with a perm goes to Greece and cooks egg and chips.
10. 12 people stab a bloke on a train and a chap with a moustache sorts it all out.
11. Some hooray Henrys get married and Simon Callow drops dead in a waistcoat.
12. Lulu leaves school. Teacher gets on bus and goes home.
13. Mrs Overall joins the women’s institute and takes her blouse off.
14. Phil Collins fan swaps business cards with his colleagues.
15. Woman who is not Elaine Page sings a lot but doesn’t say much.
My apologies for returning to a familiar theme but it’s one of those days.
Two phone calls: one to social care, the other to the psychiatrist. In an ideal world I would chose to phone neither. But Steven had his six monthly check up this morning, so needed to talk to the psychiatrist before the appointment.
First up though – social care. Now that Steven has his personal budget, his file is closed, so I just spoke to an anonymous person in the duty team. I wanted to sound them out about my plan to spend 2 nights at the new flat and whether his care plan could be adjusted or whether it required a complete reassessment. We didn’t get very far because the conversation quickly became about money. Not about need. Not about me stating that I would not be available to provide Steven’s care 2 nights a week. No, it was about how much his personal budget would have to be increased by and whether panel would sanction it.
Next up was the psychiatrist and I told him how, since Steven came off the medication, his sleep has reduced to four/five hours per night. I said that I’ve been finding it difficult to manage on little sleep. The psychiatrist said that they see reduced sleep as “a warning sign”. I asked him what it was a warning sign of and he replied, ” that all is not well”. Needless to say, his response was to introduce more medication. I muttered that I felt that might be a regressive step but he was on a roll.
So that’s that. With an LA it is all money – with the psychiatrist it is all about medication. Should I be surprised? Its always that way. Why should I expect a psychiatrist to think about anything other than tablets? What the dickens is someone with autism doing seeing a psychiatrist anyway? Of course, he is going to pass anything he’s told through a medical, medicating filter. The same with the LA. We know its not about meeting needs. We know its not about fulfilling their statutory duties. Its always about money.
More fool me for thinking I could have the conversation on any other level.
Steven doesn’t really do adjectives.
He has a couple. “Massive” is one. As in “Steven’s done a massive blow off” or “Meat Loaf’s got a massive belly”.
The other one is: “a little bit”. As in “Steven’s done a little bit blow off”, or “Got a little bit silly head on today”.
Now we can add a third. The other day whilst listening to Phil Collins singing a Groovy Kind of Love, Steven asked:
“Dad, groovy is a ……..?”
“Ummm. Groovy is a…..”
“Groovy is a thing?”
“Groovy means great. Or fantastic. Or excellent”.
“Woody’s got a groovy hat?”
“Yeah. That’s what groovy means”
“Paul Heaton does groovy singing?”
“Yeah. That’s groovy as well”.
So, in the Cowley house, it’s become the word of the summer.
Yesterday, I got home from work and Steven told me about his afternoon. He had been watching a 4 hour video of Graham Norton presenting the 100 Greatest Number One hits of all time.
“That was a massive video Steve”
“It was a massive, groovy video Dad”.
You wait 24 years for an adjective and then two come along at once.
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.