Clink. Clink. That’s the sound of several large pennies dropping in that hollow brain of mine.
I’ve had two reactions to situations over the past couple of days that have left me uneasy. I haven’t liked how I’ve felt. On Monday evening, my respite evening was shafted. The new cab firm have turned out to be totally unreliable, so I had to spend my free evening sorting out a new company to do Steven’s transport. By the time I got to bed, I was fuming with resentment.
Worse, on Sunday I found myself getting irritated with Steven. He was watching an epic 4 hour music video and wanting to discuss everything he was seeing on screen (“Dad – Frank Sinatra’s spreading the news. That’s a bit silly Frank. You can spread butter but you can’t spread news”.) I was trying to work out the support workers’ holiday pay. But I had to give up after half an hour because it was impossible to concentrate. It needed to be done though, so I knew I’d have to get back up after Steven had gone to bed. And for a while, I resented Steven for that.
Clink. I’ve become a manager. I spend less and less (I don’t like this phrase) quality time engaging with Steven because I’m always having to manage something. The care package, the personal budget, the support workers, the list is endless. I’ve never aspired to be a manager in my working life and now I find myself as an employer and a manager. How did that happen?
Clink. Its down to Personalization. The social care world, with its lack of insight and imagination, has created something in its own image. An army of managers that spends so much time managing nothing it hasn’t the time to engage with what really matters.
Everybody is a manager in social care. I used to go to meetings and everyone there had the word “manager” in their job title. Steven’s old social worker wasn’t called a social worker – she was a Transition Manager. I asked her once what that meant.? I needn’t have bothered. ” I manage Steven’s transition to adult services”. A nothing job. There are no services to be transitioned into. A manager who manages nothing. She might as well have been called, “Door keeping Manager” and manage opening a door on the cliff edge of Beachy Head.
So for Personalization to work and for LAs to rid themselves of all their statutory duties and manage nothing, they’ve had to create a whole new band of managers. The families, the carers now do the LA’s old managing role, as well as the normal day to day stuff of caring. Something had to give. And that something was human engagement.
I don’t want to be an employer. I do not aspire to being a manager. I’d like to be Steven’s dad. Or just Mark.
I’ve got a bit of a lump in my throat this morning.
One of the support workers told me a story about a mate of his who is employed by a care agency. One of the mate’s jobs is to go into a residential unit and take a young guy to the gym. Last week the manager of the unit contacted the manager of the agency expressing concern about the mate breaking professional boundaries. He was suspended pending an LA investigation. What did he do? It was the client’s 30th birthday. His only family, his brother, was out of the country. Knowing that nobody at the unit would acknowledge the birthday, the mate went to visit his client with a card and present. It was his day off. He was called into the manager’s office, and this is the bit that chokes me up, was reminded that he is not a friend and had crossed a professional boundary. Had he?
Steven’s thoughts are very much on his holiday at the moment. This morning he was running through the plans for the day we arrive. I’d already told him that I would have to go out for the shopping, so he said, “Steven Neary will do some swimming with his friends”. Am I meant to correct him on this? ” No Steven. Alan and Das are not your friends. They are your employees”.
I’ll always remember how the social worker, in her statement for court, put the words Steven’s friends in inverted commas. It expressed incredulity that he might have friends. It also felt slightly mocking. This othering of a learning disabled person’s experience is why I shudder at terms like Circles of Support. It distances. My friends don’t need a one page profile of me to reacquaint themselves with before we meet up.
Later Steven will go off to the Mencap Pool. When he gets back and I ask him who he saw there, he’ll say “Steven Neary’s friends” and will reel off a list of names of people he saw there. Should I tell him that Richard and Jean are not friends – they run the pool. What about Tyler, his personal trainer at the gym? Steven sees him as a friend because Tyler will sing Proclaimers songs whilst they are doing a chest press.
My friends are my friends for some simple reasons. I like them and they like me. I care about them and they care about me. I’m interested in them and they’re interested in me. We make each other laugh. That’s it. Odd though it may seem on Planet Social Care, Steven’s relationships are built on pretty much the same foundations.
Steven is sharp. He relates very differently to someone who turns up with a briefcase or a file. He senses the interaction is different. He doesn’t include the briefcases in his collection of friends. I’m not sure how he categorizes them but they’re not on his friends radar. They occupy a different space in his taxonomy.
As I write, Steven is listening to his Sunday tape with his support worker. They’ve just had a song from Blood Brothers that Mickey and Eddie sing. The first line is “My best friend always has sweets to share”. In a minute, they’ll go off together to the shop to get some milk, the papers, a bag of Frazzles for Steven and a caramac for the support worker. Same routine every Sunday. When they get back, the support worker will break his caramac in two and share it with Steven. They’ll eat it together whilst discussing dead pop stars.
Perhaps I should buy the support worker a briefcase for his caramac.
Yesterday, whilst watching the news, I had one of those “frozen in my chair” moments. I was viewing the CEO of Thomas Cook deliver his apology for the death 9 years ago of two children whilst they were on holiday in one of his company’s properties. The freeze moment? He started his apology with “As a father myself” and went on to say that he wanted “to help the family move on”.
Sounds familiar? It is identical to the letter Katrina Pearcey, CEO of Southern Health wrote to Connor Sparrowhawk’s family. She wrote, ” as a mother & CEO”. And later, wrote about “supporting the family to move on”.
In 2010, having just announced they were moving Steven to Wales, I received an email from the social worker. She was proposing a meeting between just herself and me. The email starts, ” As a parent, I can understand that this is a difficult time for you”, and goes on to offer her support “through this process”. I politely wrote back, declining a meeting and pointing out that as she was the cause of my distress, she was the last person I wanted to talk my distress through with.
Here are my few rules of thumb for this sort of manipulative bollocks:
1. Using a parental association in an apology immediately renders the apology meaningless. It is the presentation of empathy to disguise a completely unempathic motive.
2. When an organization in these dreadful circumstances uses the word ” genuinely”, that is an immediate alert that darker motives are at play. People who are being genuine, don’t announce they are being genuine.
3. Trust your instinct. If your instinct is to scream “fuck off” when being given a “genuine apology”, you know you are being shafted.
4. An organization, whose actions have caused you unbearable pain and distress cannot possibly ” support” you with that pain and distress. The opposite happens – your pain and distress will be increased and prolonged.
Why oh why oh why do we keep falling for this corporate conjuring trick? Why do we expect these organizations to respond with humanity and integrity. Unfortunately, our own expectations adds considerably to our distress.
These large organizations do not have a commitment to be humane. Their main priorities are not to the people using their services. They are not in the business of integrity or empathy. They are in the business of business. They are in the business of making money for themselves, their shareholders, their hedge fund managers, their private equity firms. The death of a customer is only relevant in the impact it may have on the profit margin.
Every time we engage with a fake apology we are hurting ourselves. Every time we build up an expectation of how these organizations should respond, we are opening the door to more distress.
We have to stop doing this. Our sanity and reality depends on it.
Lying in bed this morning, I browsed my Twitter timeline, I spotted a series of tweets calling for “joined up lives”. The tweeter was asking for all people involved in social care to come together and acknowledge and be respectful of all the lives they are connected to. ” Only by joined up practices can we give the people we support a decent life”. The language and power base leaves me a trifle queasy but I’m sure the aim is laudable.
As I’ve gone about my day, I’ve been reflecting on whether this joined up lives stuff is feasible. Here are a few lives I’ve encountered today:
1. Steven’s. After 2 weeks away, he went back to the Arts Center this morning. It was a morning filled with things important to him – A cherry bakewell, A chat with his mate Raj from the art group, T Rex on his compilation cassette, Learning the name of the new cab driver, Back home for the Perilous Pursuits of Mr Bean.
2. The Group. I went to Uxbridge to pay the direct payment tax bill and encountered a group of learning disabled people “accessing the community”. They had a couple of support workers with them and were window shopping at Boots. Half an hour later as I went past on the bus, they were still there. They hadn’t moved from the spot, still staring lifelessly at Boots window.
3. The Inclusion Champion. On the bus, I read a tweet from a committed believer in personalization. Her daily tweets are always energetically about the organization she is on her way to meet and the splendid work they are doing about inclusion. I picture her as a Joyce Grenfell on whizz.
4. Justice For LB. Today marked the launch of a fantastic Art Exhibition to celebrate Connor. I’ve been following the tweets all afternoon and its inspirational stuff. Someone said that the campaign is the coming together of the head and the heart. I agree but I’d add two other organs as well – the gut and the funny bone. A great group tackling another organ, the arsehole of Planet social care.
5. Norm. I caught a photo of the House of Commons and there was Norman Lamb squeezed into a backbench on the opposition benches. Was it only a month ago, he launched his green paper for social care? Where does that go now?
6. Mary. I got an email from a member of the Get Steven Home group. Her name is not Mary. She has recently been diagnosed with MS and she has asked the council for more support in caring for her adult autistic son. The Panel were meeting this afternoon to decide but she’d been tipped off by the social worker not to be too hopeful.
7. The Panel. I tried to imagine the Panel meeting but they are so secret I haven’t got a clue. I have an image of them all in Mozartesque masks. All identical. I picture them eating biscuits and getting through a dozen or so cases in an hour.
8. Mr Commissioner. I also try to imagine him weighing up the tenders he’s received for a young man who is deemed to have challenging behavior and whose council have insufficient local resources. I wonder how Mr Commissioner decides between Leeds or Swansea as a destination for this Cornwall based young man.
9. The CEO of Aspirations Care. I read yesterday how a care home run by Aspirations had all the residents removed overnight after the CQC reported concerns for their safety. I wonder if the CEO is working on putting it right or looking to maximize the income potential of the home.
10. The Direct Payments Manager. On Friday I dropped off: 260 pay slips, 60 time sheets, 12 bank statements and 624 cab receipts, so she could do her audit of Steven’s personal budget. I wonder if, today, she is going through all 956 pieces of paper with a fine tooth comb or has she thrown them all in the bin?
11. Me. I’m on my respite night tonight. I want to watch a DVD. Instead, I will be doing the April personal budget monitoring return.
How on earth does one begin to join up all these lives?
I’ve got a bad back. But this isn’t that sort of back story.
Steven used to have a double cassette, Smash Hits 1993. It was a particular favorite mainly because it had Craig McLachlan and Debbie Gibson’s version of You’re The One That I Want on it. He used to play it, all 40 tracks, at least once a month. Unfortunately it was one of the many things that went missing during Steven’s time in the ATU.
I hope I’ve earned myself several “hero Dad” brownie points. I had to go to Uxbridge on Friday morning to drop off the huge package of stuff the council wanted in order to audit my use of the Personal Budget (Hang about. Could my transportation of the personal budget cargo be the cause of my bad back?). Afterwards, I popped into one of the charity shops to browse the crimplene coats and the David Cassidy annuals. And guess what I found! Only Smash Hits 1993. It was a CD copy, not the cassette, but what the heck.
Steven was beside himself with excitement. Yesterday, he played the whole CD, all 40 tracks. Needless to say he remembered all the back stories he created over 20 years ago. Here is a selection:
“Dad. Its Danni Minogue Dad. Danni Minogue’s a bit messy today Dad. Danni Minogue spilled a bit of mince on her lovely red dress”.
” Dad. Its Spin Doctors Dad. Doctor is spinning in the whizzy chair Dad. Whizzy chairs are dangerous. Make yourself a bit sick”.
“Dad. Its East 17 Dad. East 17 singing Deep in the bacon shop. Like Steven Neary in Ali’s bacon shop next Saturday morning. Brian Harvey’s very greedy Dad. Brian Harvey’s eating four sausages”.
And on it goes.
I wish I had an interesting back story for the people who work in the direct payments team. I got a letter, confirming they have agreed to my request to have the personal budget paid directly into a bank account rather than that sodding prepaid card. Its all been set up to start next month. Where’s the rub? They want to audit my management of the budget monthly. Every month I’ll have to submit pay slips, time sheets, bank statements, car receipts, sperm samples etc etc. All that scrutiny every month. I know what the Care Act guidance says about unreasonable paperwork but this is Hillingdon.
” Dad. Its the Direct Payments team Dad. Direct payments team singing “We Got The Power. Like Snap, Dad”.
I’m still reeling from John Williams’ blog post yesterday. In case you’ve never read it, please check out “My Son’s Not Rainman”. It normally has me laughing up snot. John has been quiet recently and in his latest piece, he explained why. His fantastic 12 year old son has been excluded from school (” a pioneering autism provision”) and an investigation is underway. Like most investigations, people have to become speechless but John did mention the school’s “Spit Hood Policy”.
A school is putting a spit hood on a 12 year old boy with autism as an intervention for challenging behavior. And has a policy about it to give it credence.
Pause and think about that.
Come to think about it, why should we be shocked? Barbaric ” treatment” for people with autism is always rebadged to give it legitimacy. Electric shock treatment has become aversive conditioning. As John points out, face down prone restraint has been turned into “positive handling” and seclusion rooms are now chill out rooms.
Let’s remember that when someone is in meltdown, they are usually experiencing unbearable anxiety and/or terrible fear. And the best way of helping someone frightened out of their skin? Slip a spit hood over their head. Have four people pin them face down on the floor. We’ve really got this empathic response licked, haven’t we.
There is also something darkly sexual about all these practices. And as the person clearly isn’t consenting to being hooded and locked in a padded room, then is this sexually abusive? Pioneering abuse?
I’m too angry to write more. It’s 2015. But these “intervention policies” could have been written by Bram Stoker.
I’d love a conversation with the staff who put a spit hood over a 12 year old boy’s head. I’d like to chat over their humanity and integrity.
Actually, no I wouldn’t. I’d just like 5 minutes in a chill out room with them.
Feeling thoroughly depressed at the events of the last 48 hours, I needed a distraction, so went through some paperwork at my flat. I realized that it’ll be six months next week since I got the keys. So whilst watching the post election Question Time, my mind started reviewing how the six months have panned out.
For me, it has been a weird experience and its only been in the past couple of weeks that I’ve started to get used to it. For months, I saw myself as living two lives – my life with Steven and my life on my own in the flat. And each time I went from one to the other, I found it very unsettling. Not good or bad – just unsettling. Now I just see it as one life and that is how it is. I’m now able to do things that were impossible six months ago. I can have a long uninterrupted bath. I can watch a whole DVD without having to engage in a commentary. On Monday nights, I have a choice to cook something for myself or walk along the towpath to the pub. I usually chose the latter and don’t have to worry about hurrying back to relieve the support worker who’s shift has finished. Even though this is great, it has taken some getting used to.
Steven has adapted, although I don’t think he likes it. It certainly makes the time we are together more intense because he stores up all his conversations that would previously been spread throughout the day. Yesterday morning, for example, I was nearly late for work because Steven wanted an in depth conversation about the history of Depeche Mode. As Steven loves a back story, this includes a whole narrative about Dave Gahan’s wardrobe in the Personal Jesus video.
Steven’s old social worker saw everything about our relationship through a negative prism. Steven was “too clingy”. I was ” over protective”. And we were “too close”. Too many “toos” for my liking. Since I’ve been around less, Steven does engage with the support workers more, which is great. But he’s never going to have the Depeche Mode conversation with them because they don’t get all the references. They never will and that’s not a criticism – it would be impossible because they don’t have the shared history. My move to the flat has condensed those conversations into a shorter time and that can be tricky. I think it is part of having autism in that Steven has to complete everything to its absolute end. A DVD will be watched, through the end credits until the screen goes black. Nothing is left on a plate. He won’t get out of a bath until the last drop of water has gone down the plughole. Incidentally, this led to another of the big disagreements with the ATU. They saw Steven as being “greedy” or “unboundaried” when he ate a whole tube of Fruit Pastilles in one go. They wouldn’t accept it as a “completion” thing. Anyways, I now have to check if there is enough time to do something until completion before I leave for the flat. Time is more important.
So much has changed for both Steven and me in the last six months and I guess its going to take longer than six months for us both to get used to it.