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Trust The Cabbie

Despite years of experience that proves otherwise, I still cling on to the idea that if someone terms themselves a “professional”, they’ll have an understanding of autism and will have the empathy and good sense to consider reasonable adjustments. I wish I could let go of this belief because it doesn’t cease to disappoint and always adds to extremely stressful situations.

I’ve not slept much at all the last three nights. I keep myself awake having fantasy conversations with people from housing and social care. The place I’ve got to go and view on Thursday doesn’t feel right at all. It fails to tick so many of Steven’s boxes. I’m stressed because I can hear the housing officer saying I’m being too picky. I imagine the things that are so important to Steven’s well being dismissed as unimportant. And I still have those words like ” difficult” and “uncooperative” from 2010 ringing in my ears.

Steven has been picking a scab on his arm that has become infected. This morning I tried to arrange a GP’s appointment. The woman I spoke to knows Steven but I still explained his autism and said I would need a time when we have 2 support workers on duty as he needs 2:1 when he goes out. I suggested Thursday morning. No can do. She offered Friday morning. No good as only 1 support worker on duty. After a few minutes of stalemate and a lecture on how busy the doctors are, I asked whether the practice has an autism policy. Two minutes later, she came back with an 11am appointment for Thursday.

The other big thing is Steven’s weight. I reported that he’s lost four stone as we reduced the anti psychotics. I reckon he’s possibly lost another two stone since stopping them completely. It’s wonderful to see the weight fall and for his energy and fitness levels return. The delight is tempered though by my anger at 7 years of no professional acknowledging the link between the medication and the weight gain. The number of dieticians I’ve seen. The amount of time wasted compiling endless food logs. The doctor who said “starve him”. The psychiatrist who said, ” you’re letting Steven down by letting him get so huge”. Hillingdon’s assertion in court that I was managing Steven’s behaviour by over feeding him. For me it’s been a terrifying seven years of seeing Steven balloon to a probable early death whilst all the professionals blamed me. Isn’t the truth that the medication causes such a chemical imbalance and strain on the organs. Is an early death (by 20/30 years) the price to pay?

On the way back from swimming yesterday, I asked the cab driver to do a detour, so we could check out where the house I’ve got view is. It was a mistake. Steven had a meltdown and the five minute car journey got pretty hairy. The cab driver handled it brilliantly. As I paid him, I said, “Thanks for being so patient. You must know someone with autism?” He replied:

“Nah mate. Just common sense”.

Housing Update (Episode 1333)

Some big but unsettling news in the long running Steven’s housing application saga.

No news at all about the new build flat that he was given a direct allocation for. The handover from property developers to the council is still on hold and no new date has been fixed for the foreseeable future.

The house that I bid for last week (the one where Steven and Uncle Wayne can wave at each other from their porches) is a non starter. Steven came 18th on the bidding list.

Thursday evening a chap turned up from the council’s “Verification Team”. He explained that he needed to complete a verification form that included details of all Steven’s and my income and savings. He said that it was urgent and he needed to get it written up and handed in by Monday morning.

He came back yesterday morning and we got down to business. As an interesting sideline, I find it fascinating when professionals seem totally thrown by sings that Steven and I might life a normal life just like them. As often happens with visitors to our house, the verification officer jumped out of his skin when he saw the Mr Bean cardboard cut out in the corner of the living room. That led to a chat about Mr Bean and the council official admitted that Bean was his favourite comedy character. Strangely, he didn’t converse with Steven on the topic – it was all addressed to me. later, when we came on to the bit about my income, he asked me about my counselling training and seemed very shocked that I trained at Thames Valley University. Why is this odd? Aren’t parents of people with learning disabilities meant to be counsellors? Is university beyond us? I don’t get it. I think that to professionals who see learning disabled people as not quite human, their families go into a not as human as us space too.

Later that afternoon, I took a phone call from a woman at the Housing Association. She invited me to a viewing of the property I bid for weeks ago, a couple of weeks before the direct allocation of the new build. This explained why the verification officer said it was so urgent. She wanted me to go on Tuesday afternoon but I don’t have cover for Steven, so had to decline. She got back to me immediately and offered a viewing on Thursday morning. I accepted and apologised in case I was holding up the other bidders.

It was then she dropped her bombshell – “You’re not holding anyone up. Steven is number one on the list. If you want it, it’s yours”.

This may sound terribly ungrateful but I’m not sure I do want it. The new build ticks all the boxes both internally and location wise. This house may be lovely inside but it has several negatives about its location. I worry that someone who doesn’t know about autism may dismiss my concerns as piddling but they’re important to Steven.

Ideally, I’d like to hang fire for the new build. Steven has been allocated a flat there, so now it is just a waiting game. Trouble is, the council can’t confirm whether it will be ready before the demolition. I know that is still seven months away but they can’t/won’t make that commitment.

So, I’ll go and view the other place. It may be a palace. So much so, that it may be worth compromising on all the things that the location lacks. But I know which one Steven would prefer.

Why can’t learning disabled people be allowed to chose where they want to live? Why is their criteria so easily dismissed by the professionals?

Instead of choosing a home, he will be given a placement.


Housing Options

Four days on and I’m still reeling from the news about Steven’s housing. I haven’t told Steven yet (Can’t find the words), so goodness knows how much he’s going to reel when he finds out the latest.

You may recall that Steven had been given a direct allocation of a new build flat. On paper, it ticks all the boxes. It’s five minutes along the towpath from my flat. It’s got a great parade of shops at the top of the road with all Steven’s shopping requirements. It’s five minutes walk from Uncle Wayne’s. It won’t need an increase in the Personal Budget to cover any additional travelling costs. It won’t add anything to the support workers’ travelling time and costs. It looks ideal. We were told that the handover of keys from the property developers to the housing association happens tomorrow (15th August) and we’d be invited to a viewing some time next week. Knowing how quickly the council move after viewing I was anticipating moving in sometime early September.

Late on Wednesday afternoon I took a phone call from a Housing Association. They wanted my email address so they could send me a pre-viewing application form. It was only after I was about three minutes into the conversation that I realised we were talking at cross purposes. I assumed the woman was from the new build. It turned out that she was arranging a viewing for a property that I had bid for out of desperation about two months ago. When we were told that Steven was 34th on the list. She told me, ominously, that if I didn’t proceed with the application or the viewing  this would be seen as a rejection and would affect any future offers they make. Shit! What about the new build? I have no interest in this flat. It ticks about two of the boxes and has several major drawbacks. No immediate local shops, two buses for me to get to the flat, a more erratic bus route for the support workers, a long way from Uncle Wayne. But the machine had kicked in and the application form pinged into my in box.

The following morning I phoned the council to see where we stood. If I didn’t pursue this application would that count against Steven regarding the new build. After an hour and a half on the phone, the woman from Housing Options call centre dropped the bombshell. The new build is on hold. She cannot inform me why. They have no date for when it might be available. In the meantime, I will need to start bidding for places again as they can’t guarantee that the new build will be ready before Steven’s current house is demolished. Off the direct allocations list and back on the bidding list. I couldn’t believe my ears. The flats look ready. The carpets are laid, the white goods are installed. What could be the hold up? In the space of an hour, how can a property go from being two weeks away from being ready to move into to eight months from being ready?

I phoned the social worker and Steven’s advocate. The social worker was shocked as she hadn’t been told the news and promised to phone me back. The advocate immediately sent off an email. Later on Thursday, the social worker replied saying that the delay was unforeseen and they were hoping that things would be back on track by the end of September. However, there were no guarantees so it would be better if I started bidding again. Steven hadn’t been removed from the direct application list, so in the meantime, the council would also start looking for another place. The email ended with the classic, “You don’t want to put all your eggs in the one basket”.

Excuse me. Steven has autism. He likes and needs all his eggs in the one basket. Spreading his eggs over several baskets is likely to cause great anxiety. And hang about. Our eggs were in one basket because you produced that basket. The offer on the new build was a substantive offer. A substantive basket. The bidding process and being 42nd on the list one week, going up to 34th the next and slipping back to 37th a week later are not the kind of baskets that an autistic person is likely to be able to cope with.

I’ve talked many times about how learning disabled people are seen by services as not quite human. Their families occupy a strange space as well that is also not quite human by default. I’m not allowed to be told the reasons for the delay but the social worker and the advocate will be privy to that information. I’m not a professional from the Club, so I’m left to deal with the anxiety of that unknowing space.

In the middle of all this, as it was Thursday, the new weekly Housing Options list came out. And for the first time in four weeks, there was a property that from the sparse information you’re given looked like it might have potential. A ground floor flat, a couple of minutes walk from the new build. I told my sister about it and she sent me a photo. Although it is in a different street from her, you can see the house from her living room window. Steven and Uncle Wayne could wave to each other from their prospective porches. It has been adapted for the previous disabled tenant, so has a wet room instead of a bath and my sister reckoned it would be a tip but it can be decorated and cleaned up. It’s a possible. Not as good as the new build but a possible.

Forget the Autism Act. Forget reasonable adjustments. Forget the Care Act. Forget the MCA. When I woke up on Wednesday morning, I was planning on nipping to DFS to look at blinds and other soft furnishings for the new build. Twenty four hours later, we have three properties on the table.

And nothing certain about any of them.


Update (17.15)

I’ve just found the page on Housing Options where you can check your performance over the bids. I’ve made five bids since we knew we were going to be demolished. The vast majority of weeks don’t have any two bedroom properties to bid for. here’s how we fared with the five bids:

  1. 340 people bid. Steven came 42nd.
  2. 280 people bid. Steven came 22nd.
  3. 194 people bid. Steven came between 6th & 10th (This is the property we don’t want but we’ve been invited to view).
  4. 284 people bid. Steven came 29th.
  5. 200 People bid. This is the flat near Uncle Wayne that I bid for on Thursday. The bidding closes tomorrow.

How on earth is a person with autism and learning disabilities meant to secure housing in this system?


“Syb Ill. Bas Well. Man Well”

Yesterday Steven watched my favourite episode of Fawlty Towers. The Anniversary. The episode starts with a lie. Basil pretends to Sybil that he has forgotten their anniversary. When Sybil goes off in a huff and the guests start to arrive for the surprise party that Basil was covering up from Sybil, more lies are generated to cover up the fact that Sybil is absent. Polly is blackmailed into impersonating Sybil and the guests suffer various injuries as Basil’s sole preoccupation for the entire episode is to cover up his lies and save his own skin. Steven’s support worker isn’t too impressed with this episode. He thinks it is a bit “far fetched”.


But is it?

So much of the social care world is based on lies. The promotion of Choice when there isn’t any. The push for supported living as a beacon of independence when lots of them are just rebranded care homes. The idea that Personalisation puts someone in control of their life. The oft repeated assertion that “The service user is at the heart of everything we do”, when it is clear that money, systems, all sorts of things push the service user pretty low down in the pecking order of “everything”.

I’m just in the middle of collating the material for the next 7 Days of Action and the battles people face when their loved ones are in an ATU is one of the biggest lies of all. The lie that an ATU actually does the person any good. The entire ATU industry is based on the lie that the person needs to be there and that the experience will have a beneficial impact on the person’s life. Has anyone come out of an ATU better than when they went in? But still people are sent to their doom on the basis of a lie.


What people using services find the most difficult is the cover up, the denial of the lie. You become trapped in it and all your energy that is needed elsewhere is drained. I think that most families that are caught up in social care lies aren’t especially interested in exposing the lie. No, they just want a service for their loved one. Daily, on Twitter, I see families caught up in the many SEND lies being driven crazy because they can’t penetrate the lie being presented to them.

Steven’s year in an ATU was based on a lie. Most reports written about him during that time start with the sentence, “Steven is needing in patient services because his father is unable to care for him at home”. It took 18 months and a High Court hearing to get beyond that lie.

A couple of weeks ago, I had the alarming experience of being threatened with legal action for defamation of character. I had been involved in a Twitter conversation about a specialist autism school that had previously had a spit hood policy for students. The policy was there in black and white and we knew that it had been used at least once but the fall out was incredible. I was blocked by people connected to the school, they tried to attack a campaign I’m involved in and then came the threat of being sued. All to cover up a lie.

For three years, Justice For LB has doggedly shone a light on the terrible failings of Southern Health. Against the most insurmountable odds and the attempts of various bodies to shut them up. The lie is that Southern Health is a good, caring organisation whereas each successive story reveals a dangerous, self serving, image driven organisation. And its CEO is presented as an award winning, caring leader when the reality that grows daily is of someone for whom narcissism & greed long ago moved into the space where her soul and integrity should reside. I’m not sure it will ever end. Too much invested by too many people. Each horror story dwarfing the previous horror story makes little difference to a rotten at the core institution.


This week a story broke about another failed CQC inspection report. The overall rating was “Inadequate” and each of the six inspection criteria was rated inadequate. It couldn’t be any worse. The home for six autistic people was owned and run by the National Autistic Society. Like Mencap and their response to an awful CQC report before them, the NAS issued a press release that sought to distance itself from the people involved day to day in the running of the home. It expressed its shock about the abuse that had been taking place. But when you read page 15 of the CQC report, you discover that senior NAS management had carried out an investigation of the place two years earlier. And done nothing about their findings. Their public contrition is a lie.

Sadly, this could be one of the longest blog posts ever. Sadly, there are so many example of peoples’ lives being ruined because of one lie or another. Sadly, I’ll end at this point because it is too unbearable to write anymore.

The final scene of The Anniversary is the perfect allegory for the state of Social Care. The guests, with several injuries as a result of Basil’s cover ups have reassembled in the lobby prior to leaving. Suddenly, Sybil returns to collect her golf clubs. There is a face off in the foyer. Even then, even at that point when the evidence of all the guests’ eyes can see Sybil standing in front of them, Basil still has to keep the sham going and pretends that Sybil is “that woman in the town who looks a bit like Sybil” and has come to buy one of their fridges.

If you are a social care receiver of services, you are not even allowed to believe the evidence of your own eyes. You are not allowed to see Sybil, you will see who the provider of services wants you to see. Your own reality is skewered.

You end up being driven mad.


The Cliff Edge

It was Steven’s annual Care Plan Review yesterday. The first one carried out by the new social worker. I’ve met her a couple of times about the housing issue but she hadn’t met Steven yet. She wanted to meet him and the support workers without me for the assessment. I was okay about that. I trust the support workers to accurately present our reality. And after years of these assessments, I know that the final outcome will bear no relation to our reality. The social worker is great, so this is no reflection on her. It’s the knowledge that, (a) it’s a form filling exercise and the form is astonishingly narrow in its reach, and (b), whatever is written is completely at the mercy of Panel. That anonymous bunch of people for whom the £ is king.

Steven was disappointed that the last support worker had left. He liked her. She became known as the Pet Shop Boys lady. This was after she carried out the mental capacity assessment to determine if Steven has the capacity to manage a tenancy. It went like this:

“Steven – do you know what rent is?”

“Yes. It’s a Pet Shop Boys’ song”.

” Steven – you will be a tenant. Do you understand?”

“No.Steven  Neary is Steven Neary. Neil Tennant is a singing man in Pet Shop Boys”.

Steven has been been very anxious and destructive all week. It might be the stopping of the medication. It might be anxiety about the house move. It might be that he knows that assessments can turn his life upside down. It was probably all three. I find the pre assessment anxiety unbearable. I threw up twice yesterday morning. I couldn’t concentrate on anything. I comfort ate. Steven broke a light and a lampshade in the living room on Wednesday. I became obsessed about fixing it and replacing it before the social worker’s arrival. It’s daft really. If only we could let go of something we’ve got absolutely no control over.

I think it’s impossible not to get anxious and the only thing to do is to ride the waves of anxiety for the duration. I keep reminding myself that the assessment is nothing to do with Steven at all. The picture it paints is not him. The life it portrays is not his life.

It’s simply the annual walk along the cliff edge. We don’t want to be on that walk but we have no choice. We could be pushed onto the rocks below in one swift sweep of a bureaucratic pen.

It doesn’t matter. It’s nothing to do with us.

Measuring Outcomes in Doughnuts.

Imagine this scenario those readers who do not have a learning disability. It applies equally whether you’re in paid employment, receiving benefits or retired.

A year ago today, you met with your life planner to set the outcomes for you to achieve this year and the funding that goes with it. Your life planner remarked that you are looking a bit more porky than last year. You sheepishly admit that your doughnut consumption has increased. Your life planner asks what steps could be taken so that an outcome would mean you become less porky. Slightly wrong footed because (a) you like doughnuts, and (b) you hadn’t thought about making this one of your life goals for 2015/16, you mumble and stumble. Your life planner informs you that to achieve the outcome of being less porky, you can run round the block six times every morning at 6.30 and you can reduce your doughnut consumption to one every other Thursday. This is drawn up and recorded in your 2015/16 Life Plan.

Fast forward a year. It is your Life Plan review today. It’s been a good year. You’ve finished that book you’ve been writing. At work, you secured that good deal with Singapore. You’ve taught yourself to play the ukulele. You’ve even managed to ween yourself off your daily fix of Homes Under The Hammer. Unfortunately, none of these were set as outcomes last year. You did manage to eliminate all doughnuts after three months. But whilst running round the block you discovered a new bakers and found you had quite a taste for chocolate eclairs. Outcome = you’ve only lost 2lb.

Your Life Planner is reflective but you know is disappointed. You need an added incentive to achieve the outcome in 2016/17. If she reduces your Life Funding, you won’t be able to afford the eclairs and that will give you added motivation. You ask what would have happened if you’d come in 2 stone lighter and are told that your Life Funding would have been reduced because the outcome had been achieved and the need was no longer there.

Assessment complete. Funding reduced by 1/3rd. And a new outcome set by your life planner for 2016/17 – to dust the shelf units in your flat, every other day. Your Sunday morning top and bottom needs substantial work to meet appropriate levels of hygiene.

Today is Steven’s annual Care Plan review. I can’t for the life of me remember what outcomes were set last year. He had no input into them at all. He’s achieved so much this year but I doubt those achievements count for anything. In order to retain the status quo in support and funding we have to accentuate the negatives.

And keep our fingers crossed.

The Ending Is Nigh

In the therapy world, professionals are very serious about endings. They talk in capital letters – ENDINGS. It can all get a little po faced and self indulgent but the intention is good. I guess the general theory is that for the vast majority of us, all the significant endings in our life are abrupt, often deeply unsatisfactory affairs. The aim of the therapy therefore is to work through those ending feelings to reach a point that don’t hamper the present or the future. Tall order. Within the therapy, the therapist will talk about “working towards an ending” but in the most part this is often idealistic, and the therapy ending usually mirrors the rest of life endings – abrupt and unsatisfactory.

This trend appears to be bucked on social media where the opposite often happens. I am often amused and baffled by what my friend called the other day, “The Facebook Farewell Flounce”. You must have come across it. There you are, getting on with your life within your social media group and all of a sudden, someone will do a post that knocks you sideways with self importance and seriousness. The big announcement  that they are leaving the social media group. The format is always the same: how they’ve wrestled with the decision for days, how upset they are that they’ve been forced to make this decision, a couple of veiled pops at unnamed people in the group and a declaration that the departure is permanent. The responses are inevitable. Lots of “Please don’t gos” and “what on earth has happened?” and character demolitions of the unnamed people, purely based on guesswork.

And then the person doesn’t go. Well, not immediately. They stick around to comment on the responses to their announcement. Eventually they will go. And then return in a couple of hours or a couple of weeks.

Do these people do this in real life? Suppose they decide to change their weekly shop from Tesco to Waitrose. Do they stand in the doorway at Tesco and broadcast their decision? And then wait by the seasonal dips aisle in case anyone is interested enough to respond. Or suppose you are a member of the Cowley rambling club. Do you stop your fellow members dead in their tracks on the towpath one day and announce that, after months of deliberation, you are quitting the club for the Harrow branch? And imply, without naming names that the treasurer is using club funds to purchase personal cupcakes?

I remember going back to my junior school, a few months after going to senior school. My junior school teacher was very popular. This was the end of the 1960s and he tended to favour floral shirts, skin tight hipsters and cravats. Rather like Charles Hawtrey in Carry On At Your Convenience. I found him on the stage with a group of pupils preparing for the Harvest Festival. “Hello Mark. Come and meet my new gang”. I’ve never recovered from the blow! Go. And don’t go back.

I can’t think of any ending in my life that would tick all the therapy boxes as a “good ending”. Even when I’ve had ample notice about leaving jobs, the end usually feels a bit flat. I might shed a few tears but not enough that should be warranted after 18 years service. All the deaths that I’ve experienced, I regret that I’ve never had those final conversations with my loved ones that are supposed to make the passing easier for all concerned. The words to my dad that I struggled for 35 years to find eluded me still in the final few weeks as he slipped away. My wife’s death was so sudden that I’m left with a lifetime of unspoken words and unanswered questions – from how much I loved her to “where the bloody hell did you put the keys to the shed?”

Social Care also sets up a bit of a false illusion about endings with it’s emphasis on “Transition”. I don’t think their idea of transition is based on any Buddhist tradition but they appear to suggest that an ending is the start of something else and “Transition” will produce that lovely smooth bridge as you cross from the ending to the beginning. It’s never been like that in my relationship with social care. In fact, quite the contrary – social care endings are often the abruptest of the lot. One day a new social work manager decided to end their contract with the support agency and our support was literally, here one minute and gone the next. The transition lasted as long as it took for valued workers to collect their P45. Personal Budgets suddenly stop or are dramatically reduced and you are not so much transitioned, more like hurtled into a no care abyss. Transition can’t really work because life isn’t like that. It pretends to be something that is beyond our personal experience. Unless of course, you’re a Facebook Farewell Flouncer, where your whole online life is spent in a state of transition from one place back to the same place.

Spike Milligan admitted that he often struggled with an ending to his sketches and to deal with that, he would just walk off.



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