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The End of Ethical Social Care

Feeling pretty nauseous.

The May payment of the Personal Budget was due to go into the bank account on bank holiday Monday. I’ve been interested to see what happens on two counts. Firstly, this was meant to be the first payment to include the new extra respite allocation. It was awarded from 11th April, so would have included the four nights for May, plus the three nights due from April. Secondly, I was pretty confident they would get it wrong. In the 24 months since we’ve been getting the Personal Budget it’s been either incorrect or late 17 times. A change in the rate of the budget was bound to cause a problem.

Presumably because of the bank holiday, the money went into my account yesterday. Not only did it not include any of the new respite allowance, it was actually £126 less than the old amount.

I phoned the direct payment team and was told that the new respite allocation had “missed the payment run”. There will be a second payment going into the account sometime next week to cover the respite.

Okay but why is this month’s budget £126 down on the usual amount? She couldn’t tell me this. Different department. She only processes the batch requisitions.

I had to give up for the day. An hour long phone call that gets nowhere drains me of energy.

This morning, the postman came early. There was a letter from Hillingdon’s financial resources team. It was notifying me that as from 11th April (the day the respite was awarded from), Steven was now being charged £29.72 per week for ” care services costs”. The letter also included a breakdown of how this levy had been calculated. The thing that struck me was there was no account of Steven’s outgoings. Another phone call…..

In fairness, the woman was lovely. Clearly embarrassed, she probably told me more than she should have. I pointed out that although Steven has had financial assessments for the last two years, neither had produced a charge. What was different?

Lots apparently. Firstly, the staff had been instructed to “reset the markers to nil”. So, everyone’s assessment took no account of outgoings, even though there were columns for things like laundry, cleaning. Whatever was recorded last year, the default now is nothing and that tips you over the line into the ” chargeable ” category.

“How do we amend this?” I asked. After all, Steven still has those outgoings. Audibly cringing, lovely lady told me that I would have to write a letter with documentary evidence of Steven’s expenditure. “Do I also mention Steven’s council tax?” I asked next. This year, Hillingdon have scrapped their council tax disability relief, so he has an additional expenditure of £120. By now, I imagine lovely lady is as red as a beetroot. She tells me that council tax is an “allowable expense” but the forms haven’t been redesigned to ask the question. “Could you write it somewhere on the form”.

The final insult is that after ignoring relevant information they already have, not asking questions that could benefit the personal budget recipient, they then reduce your budget to claim these nefarious figures. And not told any of this. In the past, they paid the full budget and then you had to pay them for anything you’re charged for. Now, it’s deducted at source.

Let’s remember, the personal budget is the support workers wages. Whilst you’re waiting for the mistake to be rectified (could be up to six weeks), the staff still want paying.

Why is the end of ethics in social care? Because social care exists to serve learning disabled people. Serve. Not rip them off. Not lie to them. Not withhold vital information that would benefit them. Not leave them in a situation where they can’t pay to have their assessed needs met.

This isn’t an accident. It’s not a mistake. This is deliberate policy. A group of people have sat in a room and agreed to treat their ” customers ” this way. That’s the point you know that ethics are dead.

The Finger of Fate

I’m just resurfacing for air after Seven Days of Action. There’s a heck of a lot about the week to process and I suspect that I’m going to be doing that for a long time.

Two things that immediately seem to be occupying my head space though.

One thing that I expected to come out of the campaign didn’t happen. I thought we would hear stories in defence of ATUs. Three years ago, I wrote a blog post about St Andrews hospital. Straightaway, the post attracted comments from staff at the hospital pointing out that it was a great place to work and a much needed resource. Even now, three years on, the post attracts about 100 views a month and gets the occasional comment that I had got the place all wrong. I was really hoping for some positive ATU stories, for no other reason, to answer the question – why do they exist? It never happened.

I’m left with the picture of ATUs that I’ve always head. The seven stories and their accompanying photos reinforce the idea that no assessment takes place and from the pictures of carpet burns, broken teeth and bruises, the only treatment consists of massive doses of medication, physical restraint and terrifying isolation.

The other thing that I’m left with is that whatever they think their purpose is, ATUs will never succeed in their “treatment”. For one simple reason is that they can’t con the dudes who they build their empires on. The straight forwardness and embarrassing directness of the typical autistic dude means that they King is constantly being exposed as having no clothes on.

I love Sara Ryan’s story of Connor being taken to the “Emotional Literacy” group at STATT. He stayed for a couple of minutes and then gave the group the finger and returned to his room. One single finger demonstrating that he had all the emotional literacy he needs, thank you very much. Now, if only the Southern Health board had been taking part in the emotional literacy group…..

I was repeatedly told by staff at the ATU Steven was held in that the Unit was “the jewel in Hillingdon’s crown”. Imagine you truly believe that. And then you invite Steven to view your crown, only for him to consistently expose that it is in fact the turd in Hillingdon’s crown.

I wonder whether this daily exposing of the truth of these places by the dudes backfires against them. Are they punished for expressing the truth? I’m not saying it’s a conscious decision to punish but it must be pretty shaming to hear Tianze constantly singing his “Back Home” song. After seven years of “treatment”, it must be galling for the professionals to hear Eden say that he still wants to live in Shepherds Bush. Is there a price to pay for that searing honesty?

I suspect that despite campaigns like Seven Days of Action, it will ultimately be the dudes themselves that bring about the downfall of the ATUs. The fact that even after many years incarceration, their will still hasn’t been broken and the wonderful trait of directness remains intact will be the ATUs undoing.

The finger of fate will win through. In all its glorious emotional literacy.

My Pea or Your Pea

I’ve got another of those issues that only occur when you’re the carer of a learning disabled person and have your whole life under surveillance by the State.

As the Responsible Welfare & Financial Deputy that I am, I submitted the annual financial audit to the Office of the Public Guardian a few week’s back. Steven doesn’t understand any of this, although he is amused that Dad had another title of Deputy, which reminds him of the toy Woody he used to have. When you pulled his string, Woody used to say “You’re my favourite deputy”.

Yesterday, I received a letter from the OPG wanting more detail about Steven’s expenditure. Mainly around household expenses.

Back in the day before Hillingdon made us homeless and I was the tenant of the flat we lived in, we didn’t have a problem. (Mind, we didn’t have the OPG scrutiny then). I was the tenant. I was responsible for the bills. Like most adult children living at home, Steven made a contribution to his board but the bills were down to me.

Now, our situation is reversed. Steven is the tenant. As the State likes to distance learning disabled people from their families, I am only referred to on official documents as ” live in carer”. But I’m still living there a large chunk of the week, so should make my contribution to the bills.

This is tricky when answering the OPG questions. How do you split electricity usage between us? We probably spend equal time on the computer, do I just split the Talk Talk bill 50/50? All the furniture in the house is Steven’s – does he foot the bill for the total household insurance?

Sometimes I forget that, officially, there is no relationship between me and Steven – he is independent of me. On Saturday I ordered us both summer jackets from Premier Man and paid for them from my debit card. I wouldn’t bother to transfer money from his account to mine for his jacket. It’s just a jacket.

The biggest problem with the OPG form is how do you apportion the shopping bill? I do a weekly online shop. Do I need to separate the items? A packet of peas for him: a packet of peas for me? Does it compromise his independence for us both to eat from the same packet of peas? I buy 8 cartons of orange juice for the week. We both drink it. Do I need to label them individually? For the audit, do I divvy up the cost? If Steven squirts his armpits with some of my Brut, do I charge him?

Not since I was 18 and lived at home with my Dad, have I had any experience of this. I don’t know how non learning disabled families manage the household bills. I don’t expect they have to be so meticulous and accountable. They probably don’t have to do an annual audit. But I don’t know. I live in a world under a microscope.

I’ll leave it there. I’ve got a busy morning planned. I’m sorting mine and Steven’s Frosties into individual Tupperware containers. It’ll please the Court.

People & Homes

I’m marketing a new product. It’s tiny. No bigger than a 50p piece. You can keep it in your pocket or clutch bag. With a little bit of customising, you can wear it round your neck like a pendant. It’s called a Social Care Jargon Equaliser. It’s very easy to use. Whenever a professional dismays you with unspeakable jargon, you press the equaliser and the chorus of Charles Penrose’s The Laughing Policeman rings out. It’ll stop the speaker dead in their tracks, enable you to regather your equilibrium and then you can both start speaking in equal tongues.

This morning I was party to another of those frequent twitter conversations about what is the best term to use: Client, service user, customer etc. For a long while now, service user appears to have been the eponym of choice but it’s become a bit of a misnomer. Service user implies that there are services to use. And that hasn’t really been the case for a long time now.

So, how about “People”? Or if you are talking about one person, the person’s name.  We’re all people. We understand that term.

Later, I saw another conversation involving a woman who is trying to get her son out of an ATU. She had brought into the council’s idea of supported living and started using that phrase in correspondence with them. The council wrote back to her, saying that they “don’t have any supported living placements locally but have access to a supported living facility” about 20 miles away.

See what happens. Whether it is called “supported living”, “residential home”, “placement”, “facility” – it all goes the same way. It creates something that is different to the norm and opens the door to a million excuses why it is not possible. Supported living isn’t a facility. You don’t have to travel 20 miles to be supported in your living. You could get a flat or house down the next road and then the support comes to you. The minute something is set up as a supported living facility, you know that you’ll have to fit into it, rather than it be shaped around your needs.

So, let’s do away with all these labels and just say “a home”. Like you and I have. Takes all the mystery away. And removes all the dreadful self importance.

People and homes. Any other language and you give them a quick blast of Charles:

The Katrina Karaoke

First they were afraid, now they’re petrified.

Don’t want to use our service cos they think they’ll die.

Kept thinking I could never win awards

Without Mike Pettier by my side.

I spent all so many nights

At the Berryman’s getting pissed.

And I grew strong

I learned how to spin them along

But now they’re back

From Oxfordshire

I got off my Viral Flotilla

To see that toxic woman near.

I should have changed my gin soaked dress

I should have learned to act sincere

If Comms had told me for just one second

You’d be back to bother me.

 

Go on now go. Fuck off out my door.

Don’t turn around now

I’m the leader of all before.

Were you the one who though you’d get me in front of the GMC?

Did you think I’d crumble?

Did you think I’d give up £200K?

Oh No Not I

I will Survive

Oh as long as I know how to posture.

I know this CEO will thrive.

I’ve got all my power to live

I’ve got more awards to win.

I won’t resign

I will survive (Hey Hey)

 

 

 

 

I Was A Wartime Decoder

This blog is four years old this week. The first piece I posted was about the language of social care and how it often means quite the opposite of what is presented. It is certainly designed to cloud rather than illuminate. Have things changed in the last four year? Yes. It’s got murkier, more deceitful, more dark.

If I was ever invited on the programme Who Do You Think You Are, I’m sure that they’d find somewhere in my family tree, someone involved in cracking wartime codes. Or perhaps it was me and I’m having a karmic reenactment.

Back to my carers assessment and my request for an additional night respite allowance. The current respite night is paid at £65, so I think it’s reasonable to assume I’m asking for an additional £65 per week.

Since the assessment six weeks ago, I’ve had three emails from the new social worker. All three need some serious decoding. Despite the knowledge learned from my 1940s incarnation, I’ve struggled to understand most of what I’ve been told.

The first email included the sentence: “Your request for additional respite has been processed and an indicative budget of £18 has been generated. This will not meet the cost of respite but could be used, with approval, on a gym membership”.

I replied stating that I hadn’t asked for, and didn’t want a gym membership and did this mean that my request for respite was dead in the water.

A week later, I got a response that included, ” I have costed your respite application at £73.12 per week which has been approved by Panel, subject to reassessment”.

Confused, I wrote back pointing out that I don’t need £73.12. I only need £65 to meet the need. And why did it need a reassessment? I’d only had one three weeks previously.

This prompted a phone call and I think what I gleened is that, although the need for respite is mine (not Steven’s), the payment of respite goes in the service user’s personal budget. (I think it also meant that the £18 would still be paid directly to me, as long as whatever I chose to spend it on is approved by Panel). Therefore, Steven would need to be reassessed to see if he still needs 1:1 24 hour support. If he does (and he does) a new care plan will be drawn up and rubber stamped by Panel.

I hadn’t heard anything more on the progress until I got an email today, suggesting some dates for Steven’s Fairer Access to Care Services reassessment.

The email also included the line:”The respite plan is currently with the direct payments team to check through and broker”.

I don’t know where to start with that one. What’s it doing with the direct payment team when we haven’t had the FACs yet? And what’s with “broker”? What is being brokered? I’ve got the workers, chomping on the bit to start.

Who the fuck knows what any of this means?

I suspect it means absolutely nothing and is just delaying tactics to put off paying me the respite allowance for a few months.

In 1941, I successfully decoded the lyrics of When I’m Cleaning Windows to expose George Formby as a Nazi informant.

75 years later, I think I need to go back to Spy school.

Mightiness & Maggots

I’ve been booked to give a talk tomorrow morning for one of the big care agencies in our neighbouring borough. It was arranged ages ago and I contacted them today to double check the arrangements. It was a good job I did. I assumed that they wanted me to do my Get Steven Home talk. They didn’t. They heard that one two years ago. They want something more specific to their audience and have given me the title “What Makes A Good Support Worker”.

Coincidentally, I’ve been collating the stories for Seven days of Action and one of the excuses that comes up time and again as to why people stay so long in ATUs is that they can’t find appropriate, trained staff to support the home care package. I always feel my hackled being raised whenever I hear that excuse.

My job specification consists fundamentally of five “qualities”:

  1. Be interested in Steven.
  2. Be authentic
  3. Engage
  4. Be funny
  5. Be professional.

In that order. Steven doesn’t need manual handling, so you don’t need to go on a manual handling course. I can run Mental Capacity Act training for the support workers. In fact, we just had a very lively session on the five principles. And I don’t need someone who can write a comprehensive risk assessment of the Mencap Pool or the gym.

One story that I will tell tomorrow to illustrate all of the above.

For Steven’s recent birthday, I managed to get him the missing Gladiators VHS tape that he was missing from his collection. We have tapes with five of the eight first round heats from the 1993 series, the four quarter final episodes and the semi final and grand final. Amazon came up trumps with a VHS that contained heats 6 to 8 from the 1993 series.

Gladiators is Steven’s “centering” viewing on a Thursday morning. Each day, Steven will watch an episode from a favourite TV show after his breakfast and it focuses him on the day ahead. We’ve learned over a number of years that if Steven has unfilled time first thing in the morning, he can get very agitated and a meltdown is never far away. So, Wednesdays is an episode of Mr Bean, Friday is Fawlty Towers etc etc. Steven has had the same support worker on Thursday mornings for the past three years.

So there we were on birthday morning, Steven slips in the VHS and up pop contenders that we are familiar with from the later quarter final programmes. Michael, the support worker, immediately said:

“Hey Steven. Look who it is. It’s Sirleen – the mighty maggot”.

A huge grin spread over Steven’s face. He got up and started doing his Tigger bounce around the living room. He was excited because the support worker had recognised the contender and in that recognition, Steven’s and Michael’s worlds met. It was beautiful and very moving.

Someone told me a long time ago that if you wait for someone with autism to enter your world, you’ll be waiting a bloody long time. Best thing to do, if you want to connect, is to enter their world and then, you might engage.

For the past three years between 7am and 8am, the support worker hasn’t been on his phone. He’s not been reading the paper. He has been interested enough in what interests Steven, engaged enough, to recognise Sirleen Clark – the Mighty Maggot.

That’s what makes a good support worker.

Gladdies

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