Anniversaries & Angels

Yesterday was one heck of a day. I’m not sure how much emotion a Cowley man can take in 24 hours.

It was the first anniversary of Julie’s death. I’d stayed at the flat the night before and woke up in a sad and reflective mood. I mooched around the flat with a kaleidoscope of memories and images whirling round my head and heart.

And then the angels pitched up.

First, was a good friend of mine who is steeped in showbiz. I reminded him about our holiday soon and he reminded me about two good friends of his – a husband and wife fire eating act. Work has been a bit thin on the ground lately, so the fire eaters have opened an ice cream parlor in Devon (I’m not making this up). He told us to drop in and see them whilst we’re in Torquay and with any luck they may perform their act for Steven.

Then I noticed a post from another face from the past. In Hillingdon, children’s services stop when you are 16 but adult services don’t kick in until you are 18. You are left in a 2 year void. Less a transition, more a grinding halt. I can’t remember how it happened but during that 2 year period we managed to get hold of the services of a brilliant learning disabilities nurse. He was based in Tooting and used to travel across London once a month to work with Steven. They bonded instantly over music and worked together for 3 years. Steven was, and still is, very fond of him, even though they haven’t met since 2009. I’m deeply embarrassed how it ended, although there was nothing I could do about it. Steven went into the Unit, who immediately blocked David out. They weren’t interested in his input or experience of Steven and dropped him like a hot coal. A really sad ending. Anyway, David is in Sweden at the moment and posted some photos of himself at the Abba museum. Steven was in hysterics at the sight of David dressed up as AnnaFrid. That led to a lovely hour where Steven reminisced about the time David was in his life.

Next, I got an email from Sophy, Steven’s solicitor back in 2010. She was asking me to contribute to a Human Rights’ project she is involved with. Of course, I said yes. I told Steven she had been in touch and that launched him into playing some Mel C tracks. He’s always maintained that Sophy resembles the former Spice Girl.

And then blow me down, I got a comment on a Facebook post I’d written from one the experts appointed by the court to decide on Steven’s best interests. James wrote that he was pleased that Steven and I were fine and that he often thinks about us. (Gulp back the tears). I told Steven about the message and that triggered a lookalike session as Steven thinks James looks like John Anderson, the referee in Gladiators.

I’m not overstating this but Sophy and James are two of the people I credit with saving Steven’s life back in 2010 and it was really touching to hear from them again. Along with David, they were quite unusual in that they saw, and related to Steven as a human being. Unlike all the Hillingdon people who just saw Steven as a case to be worked on or a problem to be corrected or moved on, these people got exactly who he was. It was rare and very moving.

Steven and I rounded off the day with a mammoth music DVD session, featuring holiday songs, in preparation for Torquay. A bit of Boney M, a smidgeon of A1, a single helping of Shaggy. And during the marathon, Steven gave a running commentary of childhood holidays with him, me and Julie.

It was that kind of day.

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The Manager Part Two

I received some interesting feedback on my post yesterday, “The Manager”. A recurring feature of several comments was why do I not avail myself of the support services available to help me in my unexpected, unwanted management role?

I’ll tell you why.

Let’s take the payroll company the LA recommends. Each week I would have to send them the 5 support workers’ time sheets and the hourly rates of pay. They calculate the tax, national insurance and nett pay. They then send that information back to me to make the actual payment. The task is broken down to three stages, presumably increasing the time spent on each stage of the task. I can do the bit the payroll company do – I have a calculator, I have the HMRC book of tables. By employing a payroll company, I only succeed in spreading the onerous task over a number of days. It becomes a week long job rather than the three hours it takes every Thursday.

Let’s take the ” support and advice agency”. The LA fund a local disabled charity to provide this service. I phoned them once for advice on how to get out of using the prepaid card the LA were forcing every personal budget recipient to use. The person I spoke to at the agency admitted that she couldn’t help me. Not because she didn’t know the answer but because she wasn’t allowed to give advice that may be contrary to the LA’s preferred way of doing things. The support agency were scared of compromising their funding by being helpful.

Let’s take the prepaid card system that we have just managed to escape from. The antiquity of the system meant there was no choice in how, when, where I managed the payroll from the card. Three to five working days to move funds from A to B needs constant attention from the carer to ensure basic things like paying the support staff actually happens on time. The system prevented doing things in advance. So, if we were going on holiday, I couldn’t set up a payment to be made in advance, whilst we were on holiday. I’d have to take all the paperwork with me on holiday and attend to it during the week away. But the direct payments manager, or the support agency’s manager can take a week’s leave without work intruding.

Social care loves to outsource. It loves a middle man. In fact, the more middle men the better. In best social care bureaucratic traditions it creates as many blocks as it can between it (the LA) and the people using its services. That’s bad enough but it presents these blocks as useful, helpful. And if you fall into the trap of believing they are useful, you find your management role of the care package has become even more complicated and time consuming.

Its all circular. Social care has designed personalization in accordance with its own operational principles. It outsources everything, therefore believes the only way the carer can be supported is for them to outsource the management functions incumbent on receiving a personal budget. Social care believes to solve anything, you need to create more and more layers of management. So it follows, that in order to solve its “how do we get out of personalization” problem, it turns you into a manager.

All of the above gets in the way of life. People keep saying that the carer should be paid for managing the LA’s responsibilities. I should invoice them for all the admin work their systems have created. I’m not sure about that. I might end up with a few extra quid in my pocket but I don’t want money. I want time. I want a non management life.

The Manager

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.

Friends With Briefcases.

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.

The CEO Conjuring Trick

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.

Random Unjoined Lives

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?

Back Stories

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”.