Fragile Support

Crap example on how reliant we are for the support workers to do their bit.

We’ve had a new guy for the past 3 weeks for the Sunday shift. He gets a break between 1pm and 2.30pm. Yesterday, he came back about 3pm and I then usually get an hour to do stuff until I start to cook Steven’s tea. So, I started to clear the kitchen cupboards in preperation for the move. Within about 5 minutes of returning, he went upstairs (I assumed he was tidying up Steven’s bedroom). By 4.30, I’d dished up Steven’s tea and he still hadn’t come back. I went upstairs to find him fast asleep on Steven’s bed. I honestly thought for one awful moment he’d died as I couldn’t wake him up. Eventually he did, all full of apologies.

Today, he was covering a shift for one of the other workers who is on leave and turned up nearly 2 hours late. I’m meant to be going up to Birmingham for the conference but won’t be able to leave now until mid afternoon and we’ve had to cancel Steven’s trip to the arts centre this morning as there won’t be time to fit everything in. Steven would still expect to follow his normal routine when he gets there but it would mean adding the 2 hours missed by his lateness onto the afternoon instead. The same guy is meant to be covering the 5pm to 9pm shift later today but it makes me very nervous as I won’t be around.

Sometimes, support feels very fragile.

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A Psychological Move

We don’t have the actual move until Friday but over the last two weeks, there have been a number of psychological moves going on in my head.

The first was obviously to let go of the idea that Hillingdon are ripping Steven off by charging him such a hight rent for his new house. They are of course. But for me, the loss of a significant amount of his damages is outweighed by the fact that Steven now has a home of his home. I think back to those dark days of three years ago when Hillingdon’s plan was to move Steven to a hospital in Wales – probably permanently as I know how difficult it is to get people out of those places once they’re in. To go from Steven potentially losing everything he values to a home of his own is, in my eyes, worth the loss of £7000. It’s been great the last two weeks, shopping for the best stuff for his new home.

I keep getting the recurring thought that I’m unlikely to come back to Uxbridge after we move. Uxbridge and me have a long history. As a little kid, it was a ride on the green line bus from Southall to visit my cousin in Uxbridge. As a teenager it was the fabulous record shop on Uxbridge High Street with the cork booths. In my early twenties it was Regals nightclub and their fantastic two monthly Mod nights. In the late eighties it was the Co-op cafe where we’d go for a cooked breakfast before we caught the tube to Hampstead for our IVF appointments. In 1999, I started work at a counselling practice in Uxbridge and stayed there until last year. In the same year, I joined a gym in Uxbridge and my short lived bodybuilding career began. And in 2009, after being told by Hillingdon that we could no longer live as a family anymore, Steven and I moved to Uxbridge. Four months after moving, Steven went off for three days respite and never came home for a year. This flat holds those sad memories, as well as being a shithole. The omens were there on the day we moved in – the gas board inspected the appliances and condemned the cooker. It took the landlady over a month to replace it. Almost permanent leaking radiators, broken floor tiles in the bathroom, an unpredictable boiler, the hole in my bedroom floor – it has not been a nice place to live. And every morning, I leave the flat and as I turn the corner, the first thing I see is the Civic Centre. Walking to the bus station, I regularly pass the housing benefit manager or the “Mr Neary is the tough nut we have to crack” psychologist. When I go for my respite evening, I often see Whistlers Mother and the manager of the positive behaviour unit in the pub. Shitty, hard reminders.

Although, we’re only moving just over a mile away, there isn’t any real need for me to come back here. I’ll have to, to pick up the tube but that’s about it. I’ve given one of the support workers the job of picking Steven’s medication up once a month from Boots. The support staff can take Steven to his annual dental check up. Everything else: the weekly shop, the banking, respite evenings out can be done in Cowley. It feels great.

My sister and Wayne have done a fabulous job with the decorating and each time I go into the Cowley house, it feels like home. It feels like it can be a good home. It is a good creative space. I keep noticing the windows. Here in the flat, we have the large balcony windows but the only thing we can see out of them when we’re sitting down are the heads of the people on the upper deck of the buses. In our bedrooms (three stories up), the windows are right under the ceiling – you can’t look out of them (I have to stand on a chair to open and close them). The bathroom doesn’t have a window. In my new bedroom, I’m going to have my desk under the window so that as I write, I’ll have a view. That feels glorious.

Now that we’re into our final week in the Uxbridge house, Steven keeps remarking that this time next week, we’ll be doing exactly the same thing but in a much different space. Every morning when he pulls back the living room curtains, he says “Good morning Uxbridge”. This morning he said to his support worker, “Next Sunday Nick, it will be good morning Cowley”.

Different spaces. A different physical space. A different head space.

Challenging Behaviour & Dry Cleaning Fluid

Two short stories before I get to the main thrust of this post.

There was a fabulous old Victoria Wood sketch which was presented as a mock documentary of one of those old 1960s kitchen sink dramas. The action took place in a dry cleaning shop and the central character was probably a precursor for the character Wood played in Dinner Ladies. The big scene in the documentary sees the main character throw a bottle against the wall and she says – “I am sick to death of the smell of dry cleaning fluid”. The bottle smashes and she storms out of the shop. The next scene is of the actors sitting in a rehearsal room, discussing the character’s motivation for her speech:

“I think when she says she’s sick of the smell of dry cleaning fluid, she’s really saying she’s had enough of living in a back to back in Cleethorpes with a good for nothing husband”.
“I think she’s really saying that she cannot take any more of oppressive Conservative politics”.

The tag line of course is, Wood says – “Just a suggestion…… perhaps, she’s just saying that she’s had enough of the smell of dry cleaning fluid”.

This afternoon I saw a client at work that I’ve been seeing for just over a year. About a month ago, his 18 month wait for NHS counselling ended and he decided to take up their offer of 6 sessions and see what happened. Yesterday he had his second session with them. Obviously, I’m not going to break his confidentiality but this is a man who is doing some fascinating research of his family history. It is an honour to be in the same room as this man as he comes alive when he talks about his latest discoveries. At the second session of CBT, he’d been talking about what he gets out of this research and the therapist suddenly said to him – “You’re very keen to talk about that. I’d like to talk about the things you’re not talking about”. And that was the end of his NHS CBT experience. He said “Fuck you” and left.

I’ve been having lots of Twitter conversations about challenging behaviour. I loathe that title. There’s a whole industry built up around it now, so there must be a vested interest in labelling our guys “challenging behaviour”. I’m in the camp that firmly believes that when Steven’s behaviour becomes difficult, it is about anxiety, fear, pain or anger. It is definitely a communication. And I also believe that if the person is displaying “challenging behaviour”, the problem is with you – you must be doing something wrong. The person is not being understood and communicating in a desperate way to be understood. The longer the behaviour continues, the more of a cock up you’re making in understanding him.

I know this goes against the grain for most behaviourists. I’ve written before that when Steven was in the positive behaviour unit, he had a signature tune to greet the manager on his arrival – Queen’s “I Want To Break Free”. He frequently said to anyone prepared to listen – “I want to go home” or “I want to live in the Uxbridge house” or “I want to go and see Dad”. Reading through the unit’s records whist preparing for court, it was amazing seeing what lengths they went to, to interpret these statements – every time sailing straight past the most obvious message – I WANT TO GO HOME. It was dismissed as an example of echolalia. It was read as Steven not wanting to conform to the house rules. There were a couple of times where it was recorded: “we have to bear in mind, that Steven often says the complete opposite of what he is meaning”!!!! That seems pretty desperate to me – on their part. But then, the industry has to be fed, it needs lab rats. It needs self justification.

Imagine you are the autistic man like Steven. You have spent ages trying to form the sentence to communicate how you’re feeling about something. You are in an anxious state and are looking for reassurance. Eventually, you blurt out the best way you can but are immediately dismissed by the person you have chosen to trust with your anxiety.

You might lash out. And out comes the ABC charts, the SMART recording forms. And the agenda for the next team meeting is set. And someone goes off to write their case study for module two of their positive behaviour course.

A Care Co-Production (with bit parts for the Nearys)

Clumsily, I’m pulling together two things that happened yesterday.

Firstly, I got involved in a Twitter discussion about “Co-production”. Embarrassingly, I had to admit to not having a clue what it meant. I read the TLAP definition and have to say that my experience couldn’t be further from co-production. Certainly, when it’s come to chosing who supports Steven, the LA have made all the decisions. They have a very small bank of agencies that they use to provide care and won’t entertain the idea of going elsewhere.

Secondly, one of Steven’s longest term support workers resigned yesterday. he started working with Steven during his time in the Unit. I think he got fed up with the small number of hours the agency were allocating him, so for the past two years, he has worked with Steven on a Sunday and worked elsewhere during the week. He is a great guy and has built a fantastic relationship with Steven. It brought home again, how fragile our support system is.

Lying in bed last night, I found myself running through the previous agencies that Hillingdon commissioned and our dreadful experiences with the first three. I do consider us blessed that we found the current agency because I’d hate to go back to those early days.

Agency One:
This bunch were commissioned when Steven was about 13/14 to provide 5 hours per week. At the time, I was programme leader on a counselling diploma course and working one evening a week. The idea was for the agency to support Steven whilst I was at the college. My sense of time has shrunk over the years but I seem to remember they were employed for about five months. One night, Steven was upstairs and there were two support workers with him, the regular guy and a trainee shadowing. They were doing Steven’s homework on the computer. Suddenly, Steven came running downstairs in tears and hid in the kitchen. The staff left soon afterwards. The computer was in my bedroom and when I went to bed later, I noticed the duvet was soaking wet. I talked to Steven and it came out that he had thrown a glass of water at the support worker, who in turn punched him in the face. I reported it the following morning and then things turned very sinister. 24 hours later we received an unannounced safeguarding visit from the social worker. The same support worker had reported that inappropriate behaviour had been taking place at home and at the same time denying that he had hit Steven. It was clear what they were thinking – My (Steven’s) allegation was made up to deflect attention. And what was the safeguarding issue? For many years, Steven laid out on the sofa in the evening whilst watching TV. He liked to put his feet up on my, or my wife’s lap as he snuggled under his Buzz Lightyear duvet. The inference was horrible – something untoward was happening under the duvet. This went on for weeks and of course, diverted attention from the punching incident. We never found out what the outcome to all that was.

Agency Two:
This was the agency that supplied staff at the Unit and after Steven’s first stay there in 2008, the LA commissioned the agency to provide Steven’s home support. Three weeks after coming home, we had the dreadful incident at the airport where Steven was arrested. That investigation revealed that the agency didn’t have the licence to supply home support. Three weeks after that, Steven was assaulted by one of their staff and was kicked three times and had a hot cup of coffee thrown over him. The CPS pressed charges: the LA tried to cover it up by leading us to believe it was another service user who carried out the attack. Once again, we were never told the outcome of the internal investigation but it was a shock when Steven was back at the Unit during his unlawful deprivation of liberty to discover the same agency were being used to supply the staff there.

Agency Three:
Agency three lasted three weeks. They only had one worker. He couldn’t swim. This was shortly after Steven had joined Virgin Active and the gym expressed concern that one of the staff supporting him was a non swimmer. Three weeks after accepting the contract, the agency pulled out with immediate effect.

Eventually, that led us to Agency number four, who were brilliant. Their staff looked out for Steven during his year at the unit and continued to provide his support after he came home. Then in March 2011, the manager left the agency and most of her staff followed her to a new agency. Obviously, we wanted to follow them too but the new agency weren’t on the LA’s list of registered suppliers and here co-production suffered a hiccup as it took weeks before I could persuade the LA to commission their services. Thankfully they did and we are still with that agency to this day.

Before anyone mentions it – direct payments/personal budgets aren’t an option for us. Some of Steven’s support package is met through direct payments but the LA have their own local ceiling on how many direct payment hours can be awarded – Steven’s package exceeds that limit. Even though it would be cheaper for the LA to cover the whole package with direct payments, they refuse to do so – something about “an equitable service for all”. I’m not fussed. It’s their loss. I couldn’t give a monkeys whether the support comes from an agency or direct payments – it’s the quality of the support that is the most important thing.

And that is the Neary’s experience of co-production. Most of the time, we are sat in the audience taking no part whatsoever. Occasionally, we are allowed a small walk on part.

Will Young & Nappies

Every Saturday afternoon since Steven was 11, we’ve done a C90 compilation tape. Back in the day, it was preparation for his walkman that he used to listen to at playtime at school. These days, he listens to the tape back on Sunday mornings with his support workers, giving me a chance for a lay in.

This is how the conversation went with his support worker earlier:

“What’s this song Steve?”

“Poetry in Motion by Johnny Tillotson”

“It sounds like a very old song”.

“Very old song. Mark Neary was sitting on Nanny Beryl’s lap with his nappy on”.

“And where was Steven Neary?”

“Steven Neary was not here yet”.

The following track was “Leave Right Now” by Will Young.

“Did Mark Neary still have his nappy on for Will Young?”

Cue hysterical laughter from Steven……

“Nick’s doing silly talking. Mark Neary is a man for Will Young”

“And where was Steven Neary?”

“In David Watson’s class. Doing modern foreign languages”

Not Understanding Autism (Part 814)

This makes me a bit sad. Not shocked. Not angry. Just an ache in my gut.

A quick recap. Late on Monday afternoon I picked up the keys for Steven’s new house. On Tuesday, we took him to see his new home. When we first viewed the place the Wednesday before last, as well as the manager from the housing association, there were also a man from Hillingdon’s housing department and Steven’s social worker. They saw the condition the house was in and heard me talk about decorating it, so it will look great for when Steven moves in.

On Wednesday afternoon, I received an email from one of the adult social care team. The main gist of the email was reminding me that they had to carry out Steven’s FACS assessment very shortly. However, the email started with the sentence: “I trust the move went well yesterday and Steven has settled into his new home”.

Now, I know this was probably a pleasantry that hadn’t been given any thought at all. But it made my heart sink. How on earth could she have considered it possible that we would have moved into the property less than 24 hours after getting the key? Packing? Removals? Utilities? Decorating? Autism?

I’ve never read Hillingdon’s autism policy – I’m not sure they’ve even got one. But anyone with even a sprinkling of autism knowledge would know that it might not be a good idea to uproot someone with autism from their home, even if the destination is a good one. Preparation (as the positive behaviour unit always used to proclaim) is the key to keeping an autistic person’s anxiety levels low. Nice and easy , at a pace that Steven can manage.

The despairing feeling compounded on Thursday, as I spent most of the day phoning the different companies to notify them of the move. They all got it. The man from the electricity board understood that having a key meter is not the best idea for someone with autism and fixed a time to change the meter over before we move in. My broadband supplier understood that for an autistic person to break their Friday Youtube routine was dodgy and we’ll have broadband live, the day before we move in. The man who sorted out the contents insurance’s wife is a child minder and has two autistic kids in her care. We chatted for about 10 minutes about he need for routine.

They all got it. How can the agency that you’d most expect to understand autism (the social care department), should be the one that demonstrates the least understanding.

That strikes me as very sad.

Lists

Steven and I have drawn up two very different lists for the next two weeks. Priorities!

My list:
1. Decorate the whole house
2. Sort out gas and electric
3. Sort out water
4. Sort out broadband
5. Arrange carpet cleaning
6. Arrange removal van
7. Notify change of address
8. Get packing boxes
9. Wash nets and heavy curtains
10. Buy cooker, fridge and washing machine
11. See if GP will keep us on her books
12. Arrange support staff’s shifts for moving days
13. Buy 2 bedside tables
14. Buy towel rail and toilet roll holder
15. Clean all the cupboards
16. Buy a lawnmower

Steven’s list:

1. Pack Take That CDs in box
2. Pack Abba DVDs in box
3. Pack Mr Bean videos in box
4. Pack picture of Nanny Daphne in the paddling pool in box
5. Pack Churchill the dog in box
6. Pack Beautiful South CDs in box
7. Pack Gladiators model figures in box
8. Pack Sonique book in box
9. Pack Pringles in box
10. Say goodbye to Nelson Mandela, Elvis Costello, Richard Madeley and the Maltesers man