September 2012 to Date

Old time readers of this blog may remember the terrible time back in September 2012 when I was called to a meeting with Hillingdon where they announced they were stopping my housing benefit. Their decision was based on their belief that I should sell my share of the old marital home which was occupied by my unwell wife. At that time, Steven and I were living in a privately rented flat in Uxbridge and the housing benefit was meeting just over 1/3rd of the rent.

We then had a most horrendous year of uncertainty and distress as we knew that unless the council accepted Steven as a tenant for social housing we would be homeless. I went through the humiliating experience of having to represent myself at the Lower Tier Tribunal whilst Hillingdon came along with a barrister! I lost the appeal but Twittersphere sprung into action and assembled a legal team to represent me at the Upper Tier Tribunal. In the meantime, between November 2012 and August 2013, Hillingdon paid a proportion of the rent from their homelessness prevention fund and come August when our tenancy ended, they did a deal with the landlady for us to stay there until they found a place for Steven. It was a horrible time. Steven was really distressed by the uncertainty of where he might be living and it tapped into his big fear that he would be taken away to the assessment and treatment unit again. I found it hard to reassure him when I needed reassurance myself.

Then in November 2013, the council found Steven his lovely house in Cowley. Although the tenancy is classified as a “secure temporary accommodation” we are still here and intend to stay put until the council tells us we have to move.

In August last year, the Upper Tier tribunal heard the appeal and judged in our favour. They passed the matter back to Hillingdon to reconsider their decision. Sadly, between the first decision and the Upper Tier decision, my wife died, meaning the house that had been at the centre of all the contention was now solely mine. I have since brought a great flat which I use for my counselling practice and my respite evenings.

Today, I received a letter from Hillingdon informing me that they are setting aside their original decision as they have followed the Upper Tier tribunal and decided that the old marital home was never reasonably available to me. Furthermore, they are saying that the money they did pay during the year of potential homelessness is to be disregarded as it is classed as a “voluntary payment”. That means they have to pay me the full housing benefit that I was entitled to for the whole year.

I don’t know what to think. In many ways, things turned out for the better as a result of them making an incorrect decision. Steven loves his new home and he could be settled here for many years to come. I know have my own place through the most awful circumstances and won’t ever have to rely on housing benefit again.

But it also strikes me, that like 2010, the council erred in law and set off a set of circumstances that changed our life in a way that wouldn’t have happened if they had got it correct.

Two acts of unlawful decisions in three years seems to me a massive interference by the State into the mapping of our lives. So, the good news of today’s letter is tinged with some sadness and despair that we have been so vulnerable to wrong decisions. It is a victory but it has come with quite a cost.


A Bit of Jip

Good news. After weeks of being passed from pillar to post trying to arrange Steven’s blood test, yesterday I thought I’d have one last bash at appealing to the practice manager at our surgery. To my surprise, Steven’s GP had only returned that day from long term sick leave and I was put through to her. She is great. Within a couple of hours she called me back to say that she’d arranged for the senior male partner in the practice to do the bloods on Friday morning. Fantastic, human empathic service. Now to prepare Steven…..

When he was younger, Steven was completely thrown by pain. He didn’t have the language so it was all expressed in distressing behavior. And he would never allow anyone to attend to him. If he picked a scab, he would hide himself away and later we’d find the hall curtains covered in blood. Thankfully, Basil Fawlty entered his life. Steven had a word. Jip. So now, he can say what and where he has a problem – “Dad – got a bit of jip in my back”. Much easier to deal with.

Then along came Holby City. Steven loves a regular ensemble cast, so it soon became favorite viewing. The script is so formulaic that you can wager your house that every Tuesday at 20.40, they perform some emergency surgery. This fascinates Steven – ” Dr Elliott is taking a bleedy bit of jip out of the man’s belly”. Its helped enormously with blood tests, although he worries the doctor might drop an m&m into the cavity (Mr Bean in America). With language and familiarity, his fears have been lessened.

So, on to Friday:

Me – “Steve. Going to see doctor on Friday for blood needle”.

Steven – ” Steven’s seeing Dr?…..”

Me – “Guess. Its a doctor you haven’t seen for a long time”.

Steven – ” Dr Hansen? Dr Hansen’s going back to Holby City at easter”. (He is)

Me – “No. Not Dr Hansen. Steven’s going to see Dr Vaughn Smith”.

Steven – ” Dr Vaughn Smith? With his moustache?”

Me – “What you going to say to Dr Vaughn Smith?”

Steven – “How’s your moustache Dr Vaughn Smith?”

Me – “That’ll be nice. And are you going to tell him how you are?”

Steven – “Steven Neary is fine Dr Vaughn Smith. Jip is all better”.

Sorted. All I’ve got to remember to do now is to buy a bag of Maltezers. They worked as a blood test bribe in 2002 and the routine has stuck.

Meaning & Morse

You can blame Inspector Morse for this post. I got to the flat earlier and watched the final episode of Morse – it’s the one where he dies. My goodness, it was sad. There’s the scene where he visits his solicitor to make his will and leaves some of his estate to Lewis. I sob. It reminds me that I’ve been putting off making my last testament. It’s not that I’m afraid of facing up to my own mortality. It’s more my recognition of the utter pointlessness of trying to secure Steven’s future when I know it will hinge on the whim of whatever social care team he is under at the point of my demise.

Then there’s a scene where after many years of trying, Morse has finally got Lewis interested in Wagner. It led them to talk about how we come to make meaning of our lives.

This prompted me to remember a story from 2010. I never included it in the book. I’ve never spoken about it at a public event. It hurt too much. It made me too vulnerable. But I will today.

Imagine the scene. It’s 1999. The final year of my counselling training and we’ve moved on to existential therapy. We’re focusing on the four givens of existence and we’ve knocked off death, freedom and isolation. We’re into the final module – meaning. I sat in that room with 30 odd peers, listening to the tutor talk and tears were rolling down my cheek. I was getting a kaleidoscope of images of our first five years with Steven. And I realized that his joy, his vulnerability, his mixture of excitement and fear of life, went a long way to giving me my meaning to my life.

Fast forward 11 years. Steven has been away about 4 weeks and I find myself sitting in a coffee shop with Whistler’s Mother, the social worker. It is her invite. The enormity of our situation hasn’t hit me yet and I certainly have no idea that the council have a completely different agenda to the one they are presenting to me and Steven. The atmosphere is a little awkward and she suddenly tells me that she’d always fancied the idea of being a counsellor. She asks me lots of questions about my work and I opened up. I finish by telling her the story I’ve just written about meaning.

Her response was: “We have to make sure we don’t become unhealthily dependent on our children”.

I was flustered. ” Steven is one of many things in my life that give me meaning”, I stuttered.

But the damage was done. I was stark bollock naked and she misinterpreted me. In that moment, I knew what was going in her report. I can’t describe how scared and anxious the ensuing silence left me feeling.

Five years on, I still feel the same. Scared and anxious that something as crucial as my existential meaning could be turned on its head. Obviously I’ve learned since that in the social care world, relationships have no meaning, no value. They are definitely seen as having no place in constructing our life’s meaning. And I still feel the same in relation to Steven too, perhaps even more so. When I go to meet Morse, I’ll know that by having a relationship with Steven, I’ve had meaning in my life.

I like to think I provide him with some meaning in his life too.

A State of Flux

Been reading this magnificent article by Armando Iannucci this morning.

It put me in mind of a conversation with my mate earlier this week. I was doing my weekly moan about managing the personal budget and she commented that we are now expected to conduct our lives like we’re all a small State. There is no State anymore – we’ve all become our own states.

Everyone buys into the idea that the only way that choice and independence can be achieved in social care is through a personal budget. Why? Why does a disabled person and their family have to become a small business in order to have a semblance of a decent life? Why have I found myself as a director of a small company just so Steven can go swimming? I guess because the business model is King – we can’t even contemplate anything different. In terms of the personal budget, the State function has slimmed down to two roles: it pays the money and it’s adopted the role of ludicrous micro management and surveillance of my small business. Thank you. The State (in this case the Local Authority) probably spends more time and resources monitoring the way I operate the personal budget than it does monitoring the very large business corporations in my local area. And I’m sure that Vodaphone hasn’t had as much attention from HMRC as I have had, running a payroll for five support workers. The other morning the postman delivered this year’s package from HMRC. It made such a thump on the hall floor that me, Steven and the support worker jumped. It could have been the sound of a small goat climbing through the letterbox. The parcel contained all the forms to be completed for this April’s yearly return plus all the booklets from April to help me calculate the tax and national insurance for the forthcoming financial year.

It’s been a year since we had to take on a personal budget in order to stop Steven’s care package ripped to shreds. The State loves its partnership working but not when its partners are asking for too much money. “Stakeholders” in Steven’s care like the care agency and the cab firm had to go because their fees were greater than the LA were willing to pay. Here is the “choice” agenda at its finest – pay these agencies and Steven has his care package cut considerably or become a small business and find your own agencies. Become an agency yourself and create more agencies to service your agency. I don’t spend as much time with Steven as I used to do pre personal budget. Around 4pm on a Thursday, we used to have a Gladiators session. Now I have to leave that to a support worker because I need to get on and do the weekly payroll. And I have to clear large spaces in my diary when it’s time to do the quarterly returns. I’ve had to reduce my real paid work in a week that the LA direct payment return needs to be flied. I have to juggle my businesses – the one that earns me an income and the one that gets the state off the hook.

This week Norman Lamb published his green paper for learning disabled people and those with autism. It’s called “No Voice Unheard – No Rights Ignored”. It’s a bit of a clunky title. As Chris Hatton pointed out – there are a few too many double negatives in there. Having said that, it’s a good report and nobody can really argue with the issues he is seeking to address. I believe that Mr Lamb really wants to change things for the better and there are many points in his report that are quite revolutionary in their simplicity and logic and humanity. I suppose, at the end of the day, it will all boil down to money. The impact statement at the end of the report is very telling – it concentrates almost solely on money. Things like a decent quality of life don’t come into it – they don’t have an impact.

This week, the LBBillers met up to discuss the second daft of #LBBill. I think the LBBIll goes further than Mr Lamb’s paper. I’ve been trying to distil the aims of the Bill into two sentences and came up with this: “The LBBill aims to promote the rights of disabled people to chose where they live, who they live with, the type of support that they need and the kind of life they want to live, in their own home. The LBBill also aims to make it harder for the state to force disabled people into residential care or treatment, unless that is what the person chooses”. Nobody could argue with that I’m sure but the big test for the bill will come when the money men have their twopennyworth. What will the large providers have to say about people turning their back on their institutional homes and opting to live in their own homes? What will the large behaviour support industry have to say about the diminishing need for assessment and treatment units? What will local commissioners have to say when they won’t be able to negotiate massive block contracts to provide institutional care for people?

But we have to remember that for the LBBill or Norman Lamb’s paper to become a reality, we are going to have to accept that the disabled people and their families are going to have to become a small state for it to work in the way that they want. Neither the infrastructure nor the will exists anymore for it to be any other way.

It’s Sunday morning and Steven is having his usual Sunday music session. It got me thinking out of all the cool tracks he is playing, what should we have as the National Anthem for our small state here in Cowley. He’s currently playing Bryan Ferry’s “A Hard Rain’s Gonna Fall”. Would that do?

My Risk Assessed Day

I stayed at the flat last night and thinking of my day ahead, I thought it would be a good idea to revisit my risk assessment to monitor how I square on the risk assessment ratings system.

1. Mr Neary woke independently and made himself a cup of coffee & toast. Risk of self injurious behavior as he was only wearing his pants. Risk factor: 6. Mr Neary seeks to legitimize his immoral pants wearing behavior by arguing that there is nobody else in the placement & the curtains are drawn.

2. Mr Neary returned to bed with his breakfast unsupported and consumed his breakfast whilst browsing the internet on his tablet. Risk of scalding. No parental control on tablet is a concern. Personal hygeine needs reviewing as bed sheets haven’t been changed for 8 days. Risk factor: 8

3. Mr Neary telephoned his son. Good social interaction, although repetitive nature of conversation may need SALT intervention.

4. Personal Care (unsupervised). Despite previous concerns, Mr Neary still hasn’t purchased a bath mat, so a stand up strip wash would be more appropriate. Mr Neary also still chooses to shave his head with a wet razor where an electric razor might reduce the risk of severe bleeding. We have major concerns that Mr Neary does not take our concerns seriously and we may have to instigate compulsory positive behavior support around personal care. Risk factor: 10 Intolerable.

5. Mr Neary will spend the morning seeing clients in his private counselling room. After 4 months in this accommodation, Mr Neary hasn’t fitted a panic alarm. We also have concerns that sitting in a chair for four hours may cause health issues and have recommended a personal fitness programme.

6. Mr Neary will go to Tesco for weekly shop. He is able to carry out this activity independently but may need input from dietician as chocolate content remains high.Risk factor:7. Not convinced Mr Neary sees the importance of a healthy balanced diet. May be need for educational intervention.

7. Mr Neary will return to his family placement and engage in verbal interaction with son and support staff. Again, appropriateness of conversation questionable as dialogue likely to focus on a complete reenactments of the Mrs Richards episode of Fawlty Towers. No immediate risk but review of suitability of social interaction planned for three months.

8. Whilst son has bath, Mr Neary will spend an hour on administration of personal budget and staff payroll. For some reason, despite this useful addition to his community programme, Mr Neary feels resentment!!! May be an issue around his blood pressure which requires monitoring. Risk factor: 1.

9. Mr Neary & son will spend remainder of evening engaged in collaborative music DVD participation. Son will need reassurance about Vince Clark’s career pre Erasure. Mr Neary will be unsupported during this time and although he categorically disputes this we believe he is at risk of challenging behavior. It is important & relevant to note that one Thursday in 1998, son kicked Mr Neary whilst watching The Tamperer featuring Maya. Risk factor: 10.

10. Mr Neary & son will retire to bed at 10. Mr Neary & son will discuss how both will access the community tomorrow. Mr Neary will then engage in a meditation programme before sleep. The solitary nature of this program me raises concerns as Mr Neary is reluctant to reveal to professionals its nature, therefore a sleep medication intervention may be more appropriate.

Clearly Mr Neary does not lack capacity, so therefore a best interests decision is not applicable in this case. However, as this posting shows, Mr Neary is prone to making unwise choices. This morning, he chose to write this blog post when his independence programme clearly states he should have been running the hoover around. Until Mr Neary can understand that with choice comes responsibility, we will have to keep his “high risk” classification and work closely with him until such time as he sees the error of his ways.

That Risky Ol’ LBBill

Yesterday, I was remembering on Twitter the boxloads of risk assessments Steven had drawn up during his time in the Unit. Every activity, inside and outside the house was risk assessed. Every human contact he had was risk assessed. Every place he visited was risk assessed. And the upshot of 1000s of risk assessments was that he was permitted to do very little. Look hard enough and you can find a risk in everything.

The risks were assessed using a phenomenal system. One part of the assessment looked at “possibility” and was rated from “highly likely” to “unlikely” (Note there was no room for “not at all”). The second part looked at ” outcome” and was rated from “intolerable” to “mild”. The real outcome for Steven was that he was prevented from doing mostly everything even when the score was ” unlikely” and “mild”. I guess if you’re that terrified, then even unlikely means it could happen. In a month of Sundays.

Just a reminder before I go on that we’re talking human beings here.

One of Steven’s things since he was little is to smell my hair. He used to do it with other people but since early teenage he just does it with me. I’ve never really seen it as a sign of affection but it is a sign of human contact. I’ve never had a problem with it but it was an ” activity” that was risk assessed and rated “likely” and “serious”. So subsequently had to stop.

Learning disabled people aren’t allowed to develop and mature in the risk assessment world, so if you did something at 8 that was scored intolerable, you’re stuck with that for the rest of your life. When I was 13, I went through a short lived phase of lighting my own farts. Possibly an ” intolerable” score. But I haven’t done it for 40 years and have no intention of doing it again. I’ve matured. My rating could safely be adjusted. Steven kicked a dog when he was 9 but 16 years on dogs are still considered “vulnerable” to a repeat “serious, likely” attack.

The fabulous Rob Mitchell replied to my tweets suggesting that riskassessments are not about the risk but about worry and helping the worrier. I agree. Its about liability. Give someone a plastic plate instead of a China one in case they throw it. Make someone sit in the dining room with a 12″ portable TV instead of the communal lounge with its 42″ plasma in case of? I’ve no idea. Risk assess learning disabled people in the same way that you might risk assess a dangerous dog or a faulty aeroplane and you either put them down or take them out of action.

I was mulling all this over yesterday as I was in a meeting to discuss draft two of LBBill. Lots of hope and energy about people being able to chose where, with whom and how they live their life. I love how we’ve got rid of terms like residential home, ATU, supported living and just talk about a person’s home. But then I think about the risk/liability stuff and wonder if that is one of the reasons why those places are still so popular. In risk terms they rate lower than someone living in their own home. Sure, some people die in State settings. Some mouthy family members talk about how dreadful they are. But for the most part, people are silenced. Nobody hears or knows what goes on there, so the risk of public exposure and liability is curtailed. The people living there have been put down or taken out of action.

When you’re not seen as human, normal life rules don’t apply. The State wouldn’t be accountable if I lit one of my farts and blew up W H Smiths but it would if I was an autistic man and I exploded my own home. Life in an ATU doesn’t stop risk – it just creates new ones. It doesn’t even really contain things. But what it does very successfully is hide things. Invisible lives don’t matter. They don’t count. The LBBill is going to be so bloody annoying because it has a polar position to the current thinking. Bloody hell – its saying that a learning disabled person has a right to live a risky, messy life. The bounders.