A Fresh Approach To Independent Living From Committee Room Five

This is a briefing note to all members of the Newport Pagnellshire Adult Social Care Independent Living Majestum with an update on local policy that will take immediate effect.

Following the announcement this week of the innovative solutions to the challenge of taking on shedloads of ILF claimants introduced by our brothers and sisters at Hounslow Borough Council, I have set out our five pronged attack on those scroungers scoobydinks.  A report on the genius trailblazing at Hounslow can be found at the bottom of this scripture. Inspired clearly by the forerunning efforts of the Royal Borough of Kensington and Chelsea, we are picking up the baton and transforming our own ideas around independent living.

The five tentacles to this viral leading proposum are as follows:

1. Inspired by the lead set by Hounslow, we will be withdrawing, with immediate effect, all night time support carried out by human beings for people with physical disabilities. To facilitate their independence, we have entered into a major partnership operation with one of out key stakeholders, Shit Soakage PLC. They, at extremely competitive rates, will provide incontinence pads for all the service users who fall under this umbrella. We have secured through our award winning brokerage team wholesale rates on the afore mentioned pads which in turn we can sell to the scoobydinks at equitable rates. I think it’s fair to say that for all parties concerned, our trousers will be pretty full.

2. Linked in with tentacle one is our reimagining of what constitutes a “night”. For far too long we have adopted an outdated, unfair approach to this important classification. Not any more. From today, a night will begin at 5pm and end at 9am the following day. This empowers the service user to have 16 hours of person centred independence, safe in the knowledge that whatever fate becomes them during those hours, they will be enabled to use their own resources to deal with the situation they find themselves in. This policy will not just apply to the physically disabled but to every single person on our books with a learning disability. We are calling this our “Fairer Right to Independent Timeage” Or FRIT.

3. That leaves us with the daytimes and those difficult eight hours when we have a statutory duty to provide care that promotes the person’s well being. I have already cancelled every single contract we hold with our bank of support agency provider partners. Under no stretch of the imagination can having a PA count as being independent in the truest meaning of the word. In an example of incredible vanguardism, we have signed a co-production arrangement with Marjorie’s Dog Walking Service. Marjorie estimates that she will be able to take six service users out at any one time, although of course, the client will have to pay for their own leash and for Marjorie’s time. Despite the leather studded restraint leads, I believe this is an important breakthrough in independently accessing the community.

4. We have had many discussions over the years about rebadging personal care. It was one of our key ambitions for exnovation but quite frankly, we have never had the balls to go far enough. Personal care is time consuming. There is a feeling that it is time wasted as personal care isn’t always high up on the service user’s own agenda. Last week, I was sitting in my room at the Park Plaza, waiting to deliver my keynote speech at the O Concordat Symposinitical Gatherage and I noticed the small basket of toiletries on my vanity unit. Bingo. Before you could say fuzzy peach shower gel, I signed a 18 year contract with the Body Shop to supply all our service user’s personal care items at astronomical mark ups. Whether the service user choses to use the goods they are committed to purchasing is an organic example of independence that cannot be beaten. Indpendent personal care is available to all equitably at £39.99 per week.

5. Our final piece of blue sky thinking centred around respite. If the service users are to be independent then it is only fair that their families and carers are independent as well. To that end, we are withdrawing all respite initiatives. If the parents want an independent break, they can independently find it and pay for it themselves. In doing so, they can model independent decision making processes to their charges.

I’m sure you’ll agree that these new policies are the way forward. I feel passionate about the way we have embraced independent living and I’m sure that all the service users and their families will see the exciting possibilities offered by this landmark landmark.

For anyone interested, here is the inspiration for our new deal – http://www.disabilitynewsservice.com/disabled-woman-loses-all-but-one-of-49-hours-of-ilf-support/


Names & Numbers

“I feel that there’s no place for humanity anymore. It’s either been crushed or seen as a sign of weakness. Caring has almost become laughable”.

This was a quote from a client I saw for the first time this week. He had been diagnosed with clinical depression and was on two different anti depressants. As he told his story, I felt he was having a perfectly natural reaction to his situation. By the end of the session he said he felt better at the idea that he was experiencing an existential crisis. Obviously, I can’t disclose too much but one thing he told me that struck a chord was that in his work (in the caring profession), all the clients are referred to only by number. ” I’m just off to visit Mrs 636″. “Have you done the risk assessment for Mr 128?”

There are lots of ways in which our humanity is denied and that one is high up in the chart. It is impossible to create a picture of someone by a number.

Labels are another. And quite often, labels and numbers go together. The lead story on the BBC website today is “80 bodies, thought to be migrants, found in lorry”. All humanity is crushed there. Migrants – a loathsome collective noun. Bodies, not people. And 80 also adds something to the othering. Human tragedies are now presented in such a numerical fashion as to distant, almost to the point of meaninglessness. The DWP have released the figures finally of the number of people who have died within 2 weeks of being found fit for work. Once the initial shock of such appallingly high figures subsides, it will be hard for the horror to remain with us. Figures without names, faces or stories don’t take hold and quickly evaporate. It’s the same with the ” Death by indifference” reports about learning disability deaths. Firstly, its hard to get ones head around the dreadful large numbers. But a figure, no matter how large, doesn’t engage in any way that brings about change or action. It’s too anonymous. But perhaps that’s the point.

Next month I’m due to speak at a conference about my experience with the Court of Protection. I was going to talk about how part of the positive aspect of that experience is that neither Steven nor I were anonymised. From day one we were real people and that has increased the impact of our story. I don’t think I’d be invited to speak or people would have been interested in Steven’s story if we’d have just been SN and MN. I understand the need to protect people’s privacy but sometimes, to engage hearts and minds the full person has to be revealed.

Needless to say, as the world pushes relentlessly on in the dehumanising process, Steven goes in the opposite direction. He’s always referred to people, including himself, by first and surname, but of late he’s become interested in titles as well. As I left for work this morning, we ran through his day ahead. He announced that after watching the Mrs Richards episode of Fawlty Towers,

“Steven Neary is going to Mr Ranjit’s Singh’s sweet shop to get some Cheddars and a strawberry milkshake”.

He wouldn’t last five minutes in my client’s workplace.

No Voice Unheard

I find myself both chuckling and fuming about the developments of today.

For the past few months, I’ve been having problems with what I thought was my throat. Two trips to the GP and two courses of antibiotics later and today I went for the hospital referral to discover the problem is with my vocal chords. Basically they’ve been damaged by wear and tear. There is a nodule on one but the doctor isn’t recommending surgery yet. Thank goodness because the surgery sounds grim and I wouldn’t be able to talk for four weeks afterwards. In the meantime, I have to do several things. Rest my voice as much as possible. Start vocal therapy. Make some changes to my diet. I’ve also arranged a consultation with a herbalist. Hopefully, all these interventions will prevent the need to operate.

The hardest part will be resting my voice. From being a little boy with as the professionals believed “no speech”, Steven is now talking all day long. When he wants an intense two hour music session, Steven won’t understand that I’m trying to rest my voice. He wants to sing and discuss where the Mael brothers in Sparks spend their annual holidays and where they buy their shoes. We can’t watch Cry Baby in contented silence. We have to discuss what Johnny Depp has for tea on Saturdays and why he gets tearful having a haircut. By the end of a full day of constant chat my voice is an inaudible croak.

I went straight from the hospital to the bank to meet the Customer Experience Manager. This was the latest hurdle in sorting out Steven’s accounts so they meet the OPG’s specifications. I came away no further forward. The 34 page form ended up with 33 pages struck through with ” N/A”. However, the bank still weren’t satisfied and I’m left having to make phone calls to the Court of Protection, the OPG, the DWP and all the organisations Steven has a direct debit with. The CEM told me that a Deputy account is treated like a business account, which had a certain irony because availing oneself of personalisation feels like running a full time business. I lost the will to participate when we came to the section of the 34 page form which covered the countries Steven would be doing business with!

The bottom line is that attempting to rest my clapped out vocal chords is pissing in the wind. My life is full of conversations about the colour of Adam Ant’s underpants and trying to convince a bureaucrat that my autistic son is not the head honcho of a money laundering scheme with the Cayman Islands.

You can imagine, I’m putting a lot of faith in the herbalist coming up trumps.

The Name Of The Game

I find it hard to believe that it’s been over three months since the Office of the Public Guardian audited Steven’s accounts for last year and told me I had to make some changes. Despite me putting in an incredible amount of time and effort, due to more 2015 bureaucracy, I’ve still not been able to make those changes.

Steven has two bank accounts. One is an old business account of mine that I use as his day to day account in which his benefits are paid into. The other is an account I set up, on the advice of the court, to hold the damages he received for his unlawful detention. Following the audit, the OPG told me that I had to change the names of the accounts to reflect it was Steven’s money. Something along the lines of: “Mark Neary. Deputy for Steven Neary”. Fair enough. It hadn’t been an issue before but I can see that it is more respectful to Steven to have his name on his account.

Cue the bank. I’ve made three visits to the branch; sent six emails and made umpteen phone calls and still I can’t get them to act. Earlier this week I decided to create a bit of Twitter pressure on the bank and it worked. Within a day I got a call from the branch’s Customer Experience Manager. He apologized that he had been off for two weeks and he is the only person in the branch who can deal with this sort of experience!

Cue the quicksand. They can’t just change the name on an account. He’d have to close both accounts and open two new ones. Needless to say this will mean I’ll have to contact DWP to notify them of this change. And notify the people who get paid by direct debit from the old accounts (Steven’s gym membership, for example). More time and energy.

The Customer Experience Manager has given me a 90 minute appointment on Monday (that’s this week’s respite down the pan). The thing that nearly had me throwing myself in the canal is that because we’re having to open new accounts, I have to take proof of my identity with me. Despite having been a customer there for 30+ years. Mr CEM muttered something about ” protection from money laundering”.

I want to scream at the bank and the OPG, “YOU ARE STRANGLING ME WITH YOUR FUCKING BUREAUCRATIC SYSTEMS”. There must be an easier way.

I know what they’ll say because they’ve said it before. Under the terms of the deputy order I can claim reasonable expenses for admin. But why should I? Why should Steven have to pay me for the consequences of the nonsensical bureaucratic system? He already has to pay £350 a year to the court just to have a deputy. And that £350 pays for an annual audit. Self serving or what?

I might ask the Customer Experience Manager to name the new accounts ” Ermintrude”. To reflect that, as an autistic man, Steven is quite a decent cash cow to many spokes in the social care support wheel.

Festivities in Committee Room Five


Newport Pagnellshire Social Care Majestum proudly announces the launch of this year’s pantomime: Deidre Trussell & the Person Centred Dwarves.

See our very own viral director take on the leadership role of running a supported living scheme for 7 challenging service users of diminished stature.

Marvel at our O Champion, Bob Bibb cutting the wood from the chaffe as he wins the heart of our leading heroine.

Scare yourself witless at the cruel antics of our wicked Queen as she plots with her stakeholders to bankrupt the Dwarves through creative use of the fairer charging policy.

Have your heart lifted by the endearing one page profiles of the seven Dwarves: Innovator, Exnovator, Enabler, Passionate, Champion, Vanguard & Commissioner.

Sing yourself hoarse to the classics: “Heigh Ho. It’s off to an ATU we go”, ” Whistle while you Access the Community” and “Someday my Care Planner Will Come”.

This production will be sponsored by one of our valued providers, Precious Aspirations Care.

All proceeds will go to me.

Passion by NHS England

This morning, I came across this video of a recent NHS conference. It was a gathering of Vanguards (what is the collective noun for several Vanguards? A Self Importance of Vanguards?). I have to admit that I don’t really understand a word the chap is saying but I’m sure that everyone in that room would declare themselves as being “passionate” about vanguardship.

As a purely aside issue, I wish someone had been passionate about the soft furnishings at the venue. Those curtains and carpets really don’t work. And what on earth is that frilly, valance type thing at the foot of the stage?

Anyway, back to topic.

I’m a little bit woozy about people announcing themselves as “passionate”. Profiles are full of passionate people trumpeting how passionate they feel.

One of my very first counselling clients was a man who designed the glass casings for lightbulbs. If you’d have told me that I’d have to sit with a chap for an hour as he described the most intricate detail of his work, I might have backed out before the off. But this man was fascinating. He was so passionate about his work that it was impossible not to be caught up in his enthusiasm. By the end of a session, I’d find myself sitting on the edge of my seat, wanting to know more. Passion like that is infectious. It was not possible to not be engaged by such rich, raw passion. The man was totally fulfilled by his work and was very alive. I felt quite sad when our work came to an end a few weeks later.

That’s the thing about passion. People who are passionate about something don’t announce it. They just are. It doesn’t matter what they are passionate about because it is their aliveness that really connects.

The minute you start announcing that you are passionate, the magic is gone.

My tip to the Vanguards is: Don’t claim. Be.

Positive Behaviour Threats

I know I shouldn’t, but I still get shocked when Steven tells me a story from his time in the ATU that I’ve never heard before. There is the odd good story but most of them leave me choked up at the awful experience he had for a year.

This afternoon Steven had a meltdown. I’m on the last day of antibiotics for a throat infection and my voice keeps cracking up. This really throws Steven because I’m not talking in my usual voice and he gets more and more agitated until the meltdown kicks off. It was two hours of brain mushing repetitive talking, throwing things around and trying to kick me and the support worker. It only abated when Steven sat down and started to watch one of his old primary school videos.

Recently, he’s taking to apologising after a meltdown and announcing: “Silly head is in the bin. Steven Neary’s got his sensible head on again”.

He said that today but followed it up with a new line:

“If you can’t be sensible, you’ll be dragged off to court”.

He repeated it several times, expecting me to say it back to him to make sure I’d understood. I asked him who had said that to him and he told me that it was one of the shift leaders at the ATU.

What a thing to threaten someone with whilst they are in deep distress. In fact, for that matter, what a thing to threaten someone with at any time. It’s also rather ironic because it was a court that stopped Steven being dragged off to a permanent placement in Wales.

The ATU was billed as a positive behaviour unit. I hate to think that threats like that are what passes for positive behaviour support.