The Human Side of Housing Processes

Steven was awake at 4am this morning, having a full scale meltdown. Crying. Trying to rip his duvet. Pleading for reassurance to the question – “Don’t want new Uxbridge house people keep all Steven Neary’s CDs”. It lasted until 5.30am.

The cat is out of the bag now. I’m struggling enough to contain my anxiety but now that Steven knows we’ve got to move soon, his anxiety has kicked in big time. The day before last, the doorbell went at 8.30 in the evening and it was the new tenants wanting to measure up for curtains. They were excited, full of questions and oblivious to the distress they were causing Steven. I sent them away but it was too late.

15 days to go.

When I sat in the housing benefit office 330 days ago and was delivered the bad news about them stopping my benefit, I never dreamed that we would still be in a terrible state of limbo with 15 days to go before the tenancy ends.

As usual, everything is a process. And they will argue that they have followed due process all the way through. I’m not so sure.

Last week I got an email from the housing manager that stated: “I am hoping to give you an update by the middle of next week”. Hoping? Update? Middle of next week? It couldn’t be more vague if it tried. And it’s now the middle of next week and no update has arrived. But perhaps that was never the point. Perhaps we haven’t suffered enough yet.

It’s funny how all those old wounds that I thought I’d tended to, can suddenly resurface. When we moved into this flat in 2009, the gas board came and condemned the cooker. It took the landlady a month to buy a new one. During this month, the old, “theres always something or other with Mr Neary, social worker turned up for a visit. She put on her serious face and said she was very concerned that Steven was having to have takeaways most nights. There was a threat in there.

Face forward 4 years and the same thing is happening. Even if the council find us somewhere, it will be too late to get the kitchen equipment delivered before we the move. Stupidly, I keep picking the 2009 scab and worry about how the lack of a cooker and fridge will be seen by the professionals. It’s completely irrational but it’s the sort of bollocks that has led to me having on average 4 hours sleep a night for the past two weeks.

Steven keeps wanting to put things in boxes. Yesterday, he finished watching his set of Gladiators videos and went off looking for a box to put it in. Scared shitless that it will be left behind or someone might claim it as fixtures and fittings.

15 days to go. How much more anxiety can be cranked up in that time.

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Carespeak – A Shout Out

A number of people have suggested following last week’s BBC blog post, that there should be a book written – a user’s guide to the language of the social care world.

Well – here goes. How about: “Carespeak – Translating the Language of Social Care”

I see a series of short chapters on the various words and phrases, that each follow the same format. There will be four sections to each chapter:

* What it (the phrase) means.
* What it really means in reality
* How it is presented to you
* How to work with it in discussion with the professionals.

I’d also like it to be the first publication under the banner of the Steven Neary Foundation.

This is where you come in. I’ve compiled the following list of social care phrases that I will include in the book. If any reader can think of anymore, please contact me either here on this blog; on Twitter at @markneary1; or by email at markneary@btinternet.com. The more I can try and deconstruct in the book, the better.

Here is my list so far:

* Accessing the community
* Assessed/eligible needs
* Advocate
* Best Interests
* Behaviour management plans
* Befriender
* Care
* Choice
* Continuing care assessments
* Commissioned support services
* Circle of support
* Community programme
* Challenging behaviour
* Change champions
* Carers assessments
* Community transport
* Deprivation of liberty
* Direct payments
* Empowerment
* Fairer access to care services assessment
* Fairer charging policy
* Family
* Flexibility
* Hubs
* Independence
* Indicative budgets
* Inclusion
* Keyworker
* Logs
* Mental capacity
* Multi disciplinary meetings
* Normalisation
* Person centred plans
* Personalisation
* Placements
* Personal care
* Positive behaviour support
* Personal budgets
* Panel
* Putting People First
* Risk assessments
* Risk management plans
* Resource Centre
* Respite allocation
* Risk control
* Resource allocation systems
* Service user
* Self directed support
* Safeguarding
* Service provider
* Stakeholder options
* Service Review
* Specialty
* Serious Untoward incident requiring investigation
* Social capital
* Service brokerage
* Supported living
* The autistic umbrella
* Transition
* Transformation
* Transparency
* Unmet eligible needs
* Valuing People
* Welfare deputyship
* “We’ll have to take this to the Court of Protection”

So, this is a shout out for more of the same to be included in a handbook for people trying to make sense of a system that is crucial to the support they require.

Thanks

Update 3/8/13

Thank you so much to all the people who have responded to my shout out. I’m currently collating a new list and will post it here as soon as i’ve done it.

In the meantime, here’s a clip from 2012 about the closure of Hillingdon’s day centres. Towards the end, you’ll hear the statement from Linda Saunders, the director of social care. It is almost beyond parody. And if anyone had any doubts that I’m over-egging this subject of deceitful jargon, this settles it:

http://www.youtube.com/watch?v=oGtUJdyIhEk

“Why Don’t You Talk Properly”

Two timely incidents yesterday, following my post on the BBC Ouch Website.

Steven was out and about with his support workers yesterday and they bumped into one of the staff from Steven’s time at the positive behaviour unit. I remember her and liked her a lot. She used to work hard to engage with Steven, especially tuning into his music likes and dislikes. They got chatting and she asked the support worker: “So, what does Steven do on his community programme these days?” Awkward moment – the guys didn’t know what she was talking about. We don’t frame things that way at home. We talk about; going to water aerobics; the gym; the day centre. If she had said – “So, what does Steven get up to during the week these days?” a conversation would have followed. It was a minor moment but illustrated the point I was making on Ouch – the language is on their terms. You have to learn it or you’re not able to converse.

Last night I got an email from a new follower of this blog. He told me that the post resonated with him a lot and he quoted a paragraph from a letter he received on Wednesday morning. His son has been receiving a care package for the last seven years, made up of direct payments and he employs a support worker out of these direct payments. This is the opening paragraph of the letter:

“I am pleased to notify you that your fairer access to care services assessment has been processed and you have been awarded a personal budget of…….”

This was the first time he had heard the phrase “fairer access to care services” and wasn’t sure what it meant. He was also confused at the talk of a “personal budget”. What has happened to direct payments? And the amount quoted was significantly less than the old direct payment package.

Two things here: the letter made the assumption that the reader understand these terms. And secondly, and more sinister, the use of the word “fairer” hides the fact that the budget has been cut.

Last night Steven was watching a Fawlty Towers DVD. It was the one where Bernard Cribbens wants to “Reserve the BBC2 channel for the duration of this televisual feast”.

Basil’s reply was quite apt – “Why don’t you talk properly?”

Overwhelmed

It has been the craziest two days ever. Since the BBC published my blog post, I have been quite overwhelmed with the reaction.

How about these few stats:

Number of views of BBC page: 201,000
Second most read page on the entire BBC website on 24th July, after the Royal baby
Number of views of my blog: 35,349
Number of new followers to my blog: 560

I want to thank everyone who has commented either here, on the BBC, on Twitter or Facebook. The responses have been almost universally supportive and it feels great that I seem to have struck a chord with my piece. Comments have come from all over and it has been particularly heartening to see all the people who work in the social care field express their frustration and support.

It has led to lots of offers to write or speak at events. It has also led to some personal offers that have really choked me up – offers to help with when we move; offers about helping us get to Somerset.

Steven’s person centred plan drew a lot of comments and I’m pleased to say that since Steven was released from the positive behaviour unit, we have done all six things that he was denied back in 2010.

The incredible reaction has convinced me to press on with launching the Steven Neary Foundation. I mentioned the idea a few weeks back but have had to put it on ice whilst the eviction is taking place. Once we’re settled, wherever we end up, I will be going full steam ahead.

There are lots of new followers who have asked me questions about the history of our relationship with social services. The biggest event was Steven being unlawfully deprived of his liberty for a year back in 2010. Both Steven and I deal with the trauma of that awful year, 3 years on. If you want to read more about what happened, I’ve attached some links:

Here is the High Court judgement of Justice Peter Jackson about the events of 2010: http://www.judiciary.gov.uk/Resources/JCO/Documents/Judgments/neary-judgment-09062011.pdf

Here is the book I wrote about 2010 and the relationship between Steven and me:
http://www.lulu.com/shop/mark-neary/get-steven-home-2013/paperback/product-20983170.html

Here is the link to the Facebook group I set up in 2010 to try and get Steven home:
https://www.facebook.com/#!/groups/459113487503689/

Once again, thank you so much for all the support. I had been feeling pretty battered by the eviction problem but have been so lifted by all the good people who have been in touch.

Resonances of Mrs Slocombe’s Pussy

Here is a bit of a collector’s item – a positive post from me!

It’s been a shit three days, mainly due to not being able to sleep. It’s not the heat that has kept me awake – more the heat of our housing problem. For the last three nights, I have on average 3 1/2 hours sleep per night. My mind catapults between two thoughts and then I get caught up in the feelings of those thoughts. I start with: “What will happen in 24 days if Hillingdon are lying to me again and they don’t have a place for Steven and I to move to?” That then triggers off massive fear and loads of questions about buying furniture; arranging support for the day of the move etc etc etc. Then I swing over to the thought: “What happens if I win my housing benefit appeal?” And that brings up great rushes of anger. Three years ago we had a year of hell because Hillingdon didn’t follow the law. Surely, the last ten months of hell haven’t been because they couldn’t get the law right again.

Where’s the positive bit I can hear you ask.

This morning I got up determined to do something. I had no idea what but I loathe feeling so powerless. The last few days I have been phoning chain stores in an attempt to order some furniture for the next flat but none of them would accept an order without an address – neither would they take an order and store the items until I could give them an address. It didn’t matter that time has already ran out for some items – we wouldn’t get them before we move.

So I decided to go to our local department store, Randalls. It is an incredible throwback to a more innocent time. The men’s hat department is next to the dining tables; they have half day closing on Wednesdays; they even have a small selection of antimicassers. I love the place. I love the smell. I love the staff. I love the idea that as I enter the shop, I may be approached by a Captain Peacock, shop walker, who takes me under his wing for the duration of my shop.

It went like a dream. The assistant agreed to sstore all the items for me as long as they were in stock. I just need to phone him a couple of days before I want them delivered and he’ll organise a mass delivery. As I brought Steven’s sofa from there a while back, he gave me a 25% off voucher and when he came to tot up the final bill, he knocked a further 10% off because he’s heard about our case and he wanted to help in some way.

Isn’t that fabulous? This tiny oasis in the heart of Uxbridge, with a massive heart and decent values that have meant the shop has survived over 100 years. You couldn’t possibly imagine that treatment in DFS, Argos or any of the other chain stores.

And that was that. I went off with my shopping list and ended up with 2 beds; 2 huge wardrobes; a dining table and chair; a smaller sofa and a desk. Thats is us sorted for whenever the council come up with an address for Steven. All I need to do now is order the kitchen equipment and perhaps another set of storage shelves.

On the way to the shop I bumped into Wally Kennedy. Wally is a former councillor and I met him for the first time back in 2010 when he was a great support in trying to get Steven home. He does so much great work with people in terrible housing crisis and I often see him at his “office” – a bus stop outside the Civic Centre. We chatted and as we parted, Wally put his hand on my shoulder and said: “You’re an extraordinary man Mark – keep strong”. It really choked me up.

It’s funny but in our modern world, people like Wally and Randalls department store are easily dismissed as dinosaurs. But by christ, I’d rather have an ounce of their humanity than the awful inhumanity I encounter in the social care world.

It’s been a mighty fine day.

Units of Currency

Alicia Woods wrote a fantastic article for Community Care today. It was prompted by the terrible death of LB in a bath at an NHS assessment & treatment unit. As well as posing the question, how the fuck could something like that happen, Alicia also tackled the question – what the fuck was LB doing there in the first place.

It’s a massive question. What is the point of these units? Who do they serve? Is there any reliable, independent evidence that they have any useful purpose?

It was clear to me from Steven’s year in the unit that many many people’s jobs were tied up in the place. Nothing to do whether the place is successful in terms of outcomes for the “patients” – the unit seemed to exist to keep an incredible number of people in work. And there has to be a regular stream of people going through the unit to demonstrate its worth to the CQC. The “patients” in the unit are irrelevant; their main purpose being a source of someone’s salary and pension.

I’d guess that most of the people at the positive behaviour unit that Steven was held in were somewhere along the autism spectrum. It is an “assessment and treatment unit”. Can autism be treated? In our case, this led to enormous problems. In order to shoehorn him into the unit’s model of “treatment”, Steven’s autism was denied. As the independent psychologist wrote in his report: “minimal attention was given to Steven’s autism”.

But this is based on the assumption that “treatment” is actually taking place in these units. Or more to the point, the person needs to be there in the first place. I cannot find any evidence that “treatment” is being provided. From my experience, and from the anecdotal evidence I have heard, these units are not about treatment – they are containers. And very useful containers if the support system is so shite that nothing else is available. In our court judgement, the social worker is said to have recorded on 14/12/09 that there was a problem at home. Nothing happened. The next paragraph said that the Unit manager discussed alternative Christmas activities on 29/12/09 – a full fortnight later. Additional temporary support a lot earlier would have been very welcome. Did Steven get moved to the unit because 16 days after a problem arose, the professionals felt there was still a problem? Or was it because one of the patients in the unit was due to move on imminently and the LA couldn’t afford an inspection of its “important resource” with only two very long term residents in it. Who knows?

Where is the evidence that these units are more successful in providing treatment than in the person’s home? To answer that, you have to go along with the potentially flawed conceit that the person needs “treatment”. Who says so? Oh, the Unit says so. That’s alright then.

In Steven’s case, and I think in LB’s case, what was needed was home support during a difficult period. The trouble is support costs money – “treatment” brings in money.

And once you’re in a unit, you become trapped in a web of deceit that the unit is actually benefiting the person. Once again, no real evidence that I can see, but if the unit exists, it must have a value. For the deceit to work, the family has to be sidelined. You cannot have people who love and really care for the “patient” suggesting that the King’s New Clothes is alive and kicking in 2013. Instead, you are screwed by meaningful innovations like “choice” and “treatment plans”. Sara Ryan wrote during LB’s time in the unit that he had a chart in his bedroom, that LB completed to track his emotional literacy. For four days running, it had sad faces on it. I want to commit unspeakable acts on anyone who thinks that was a good thing – a useful “treatment tool”.

Thank you Alicia. Sometimes I feel like screaming from the rooftops that these units are a putrid con trick with our loved ones used as the driver for the con. Hopefully, Alicia has started a debate that is meaningful and will blast apart the myth that treatment units/positive behaviour units have a purpose for our sons and daughters.

There does seem to be some evidence that something happens to our young autistic guys, sometime during puberty. Is it medical? Is it social? In Steven’s case, he seemed gripped in a fear about his future after school. All the routines of the previous 14 years gone. What on earth dos the future hold? What is being an adult all about? Totally understandable anxieties – snatched on by the state to boost its revenue stream.

Truly this issue warrants a great big safeguarding investigation about the people claiming to be acting in our children’s best interests.

A Social Story About Social Care

Why Social Care Is So Shite

* Personalisation has been hijacked to cut costs.

* Fairer Charging Policies are unfair

* Person centred plans are system centred plans.

* Choice is no choice.

* Independence is about a reduced quality of life

* Fairer access to services are unfair.

* Families can just fuck off

* Processes render the individual invisible.

* Accountability doesn’t exist.

* Support plans are about affordability, not care.

If you disagree with any of the contents of this social story, please write to your category manager, transformation manager, transition champion, or Cannon and Ball.

The End.