It was a couple of weeks after the Mencap Pool had been risk assessed. The Unit had drawn up their risk assessment bible and we were all struggling to follow the many pages of it.
Steven had been back at the pool about a week. There is another dude who uses the pool, who Steven tends to give a wide berth to. The dude is interested in Steven and often comes quite close. Anyway, this particular evening, along comes the dude and, I guess, a bit too close for comfort for Steven, who hit him across the back .From what I can gather it was a push more than a hit. The people at the pool have a great attitude when things like this happen (and Steven has been on the receiving end over the years as much as he's dished out). They deal with it quickly, empathically, firmly and respectfully.
This is now September and one of Steven's support workers had been, quite frankly, driven mad by the oppressive regime of the Unit. For weeks, he had been paranoid that everywhere they took Steven they were being followed by staff from the Unit, waiting for them to slip up. I don't think they were followed but time and again, the Unit treated Steven's regular workers like shit. His feelings were understandable. So, when they got back to the Unit, he wrote a full incident report of what the Unit turned into "an assault".
Outcome = more in depth risk assessments needed. Steven was stopped from going to the pool for another period of reassessment. The regulars at the pool were horrified by this sanction. It's just not how we deal with stuff at the pool. The woman who runs the pool wrote the Unit a letter. And tear jerkingly, the mother of the dude, also wrote a lovely letter, pleading with the Unit to change their mind.
This prompted the most sanctimonious load of shit from the social worker - she outdid herself: "Pretend it didn't happen? So, are our learning disabled people not to be taken seriously when they're assaulted. Don't they have the same rights?"
This was pretty rich coming from her. The person who had lied to Steven for seven months about her plans for Steven's future. Don't learning disabled people have the same right to be told the truth about social worker's plans?
Nope.
Tuesday, 29 April 2014
Monday, 28 April 2014
Story Forty Five - Risk Assessing
I wrote in an earlier blog that when Hillingdon authorised the first Deprivation of Liberty order, they cancelled all of Steven's outside activities until they had done risk assessments of all the places he goes to. He only goes to five places regularly, one of them is a council run centre, but it took them three months before they completed all the assessments.
The first one they did was for our local Mencap Pool and this story shows the arrogance that they felt.
Steven had been going to the Mencap Pool for 10 years. The group he belongs to is primarily for the learning disabled. It can get a bit hairy at times but there is a love and empathy and lack of judgement there that is very rare. Anyway, one Friday night the manager of the Unit turned up to do his risk assessment. He didn't announce himself to the people who run the pool, he didn't explain why he was there - he just wandered round the pool making notes. The organisers of the group were thrown by this attitude as it is unheard of for a stranger to wander into the pool and not talk to anyone. It also shows a disregard for the users of the pool.
The risk assessment was duly completed - 10 pages of dos and donts. It was an incredible document. Everything was broken down into a scale ranging from "intolerable risk" to "minimal risk". I showed it to a friend who does risk assessments at Heathrow and he said they had slimmer documents to cover attacks on aeroplanes.
Of course, it was just an exercise in arrogance and job justification but it angered me that Steven wsa being used like an object to achieve that justification.
The first one they did was for our local Mencap Pool and this story shows the arrogance that they felt.
Steven had been going to the Mencap Pool for 10 years. The group he belongs to is primarily for the learning disabled. It can get a bit hairy at times but there is a love and empathy and lack of judgement there that is very rare. Anyway, one Friday night the manager of the Unit turned up to do his risk assessment. He didn't announce himself to the people who run the pool, he didn't explain why he was there - he just wandered round the pool making notes. The organisers of the group were thrown by this attitude as it is unheard of for a stranger to wander into the pool and not talk to anyone. It also shows a disregard for the users of the pool.
The risk assessment was duly completed - 10 pages of dos and donts. It was an incredible document. Everything was broken down into a scale ranging from "intolerable risk" to "minimal risk". I showed it to a friend who does risk assessments at Heathrow and he said they had slimmer documents to cover attacks on aeroplanes.
Of course, it was just an exercise in arrogance and job justification but it angered me that Steven wsa being used like an object to achieve that justification.
Story Forty Four - Case Conference
Yesterday I wrote about the wonderful people we met at the demonstration that took place on the day of the "window dressing" case conference. Back down to earth with a bump, here is the story of the actual conference.
The meeting was scheduled to begin at 2pm - I was hardly likely to forget something as important as the meeting where Hillingdon lay their cards on the table about their plan for Steven's future. At 1.45, I received a call from one of the managers, asking me why I was 15 minutes late. I lost count of the number of times when meetings would be put back or cancelled without me knowing, but this was the first time, they tried to unsettle me by insisting I was late. So, I put down my placard and went into the Civic Centre.
My friend came with me and the first shock was that none of the usual suspects were present - just three very very senior managers. This was never explained but I guess it had something to do with the press coverage our case had been receiving. Time for the big guns.
It was utterly depressing. One of the managers kept saying that she wanted Steven to be "futureproof" but she couldn't explain what she meant by that.
They stuck to their guns about Steven never being allowed to return home. And they refused to allow a trial period where we could put to the test, whether I could cope with Steven at home. Nothing would shift them. Instead, they talked about their plans to call for "tenders for Steven's care" from residential facilities. There was nothing locally, so they said I should prepare myself that the move could be many miles away.
By now, I knew more about the MCA and DoLs and knew that Hillingdon didn't have the authority to make these decisions - they had to be put before the court. Hillingdon had already thought about this and said they would be making an application to court by the end of the week (it was the 10th August).
They didn't. It took them until 25th October to submit their court application. And even at this stage, I was still sort of trusting them, so didn't bother to submit my own application believing that they would keep to their word. Ain't I a fool.
My friend took a pen camera with her but we decided not to use it. Which was a shame because it would have been great to post some footage of three people driven mad by the system in which they work, banging on about a human being becoming "futureproof".
The meeting was scheduled to begin at 2pm - I was hardly likely to forget something as important as the meeting where Hillingdon lay their cards on the table about their plan for Steven's future. At 1.45, I received a call from one of the managers, asking me why I was 15 minutes late. I lost count of the number of times when meetings would be put back or cancelled without me knowing, but this was the first time, they tried to unsettle me by insisting I was late. So, I put down my placard and went into the Civic Centre.
My friend came with me and the first shock was that none of the usual suspects were present - just three very very senior managers. This was never explained but I guess it had something to do with the press coverage our case had been receiving. Time for the big guns.
It was utterly depressing. One of the managers kept saying that she wanted Steven to be "futureproof" but she couldn't explain what she meant by that.
They stuck to their guns about Steven never being allowed to return home. And they refused to allow a trial period where we could put to the test, whether I could cope with Steven at home. Nothing would shift them. Instead, they talked about their plans to call for "tenders for Steven's care" from residential facilities. There was nothing locally, so they said I should prepare myself that the move could be many miles away.
By now, I knew more about the MCA and DoLs and knew that Hillingdon didn't have the authority to make these decisions - they had to be put before the court. Hillingdon had already thought about this and said they would be making an application to court by the end of the week (it was the 10th August).
They didn't. It took them until 25th October to submit their court application. And even at this stage, I was still sort of trusting them, so didn't bother to submit my own application believing that they would keep to their word. Ain't I a fool.
My friend took a pen camera with her but we decided not to use it. Which was a shame because it would have been great to post some footage of three people driven mad by the system in which they work, banging on about a human being becoming "futureproof".
Sunday, 27 April 2014
Story Forty Three - Window Dressing
In August 2010, the council invited me to a case conference to discuss their plans to move Steven to Wales. This is the meeting that Justice Peter Jackson described as "window dressing". The meeting was putrid but this post is about the good things of that day.
The Get Steven Home had been running about 6 weeks at this point and had amassed about 4000 members. There had been lots of discussion within the group how to mark the day of the conference and it was decided to hold a demonstration outside the Civic Centre. Obviously, most people couldn't get there but two actions were decided for those who couldn't attend. As many people as possible would send an email to the director of social care that morning, asking her her to revisiit their decision - she must have arrived to work to find 2000 emails. And at 2pm that day (the time the meeting started) people would play Mama Mia in tribute to Steven.
Here are the great things of the day:
My sister's partner designed placards with pictures of Steven from our Blackpool holiday.
My friends Shelley and Mark designed the fliers and badges to hand out. (When I reported that on Facebook, I did a typo and wrote "Shelley and Mark turned up with a hundred badgers - I got lots of questions as to what we used the badgers for).
A woman who was the mother of a young autistic boy arrived. It was the school holidays but she had used some of her valuable respite to arrange care for him to enable her to attend the vigil.
Steven's old school caretaker turned up and reminded me that Steven used to serenade him with "Ground Control to Major Tom".
A guy with aspergers arrived and wouldn't let go of my hand until I promised that I wouldn't let them take Steven away. A similar thing had happened to him five years earlier and it took him three years to return to his family.
People from Steven's gym came over and turned the gym foyer into a Get Steven Home event.
Jean, who runs the Mencap Pool, came and took fliers down to the shopping precinct. She even got HMV to play Mama Mia at 2pm.
Two of my clients turned up having read the story in the local paper and said that as I'd helped them, they now wanted to lend their support for me.
The local paper and Private Eye followed up their earlier stories with a report of the day
And hundreds of complete strangers stopped for a chat and to sign the petition.
Amidst all the bleak moments of 2010, it was an oasis of beauty.
The Get Steven Home had been running about 6 weeks at this point and had amassed about 4000 members. There had been lots of discussion within the group how to mark the day of the conference and it was decided to hold a demonstration outside the Civic Centre. Obviously, most people couldn't get there but two actions were decided for those who couldn't attend. As many people as possible would send an email to the director of social care that morning, asking her her to revisiit their decision - she must have arrived to work to find 2000 emails. And at 2pm that day (the time the meeting started) people would play Mama Mia in tribute to Steven.
Here are the great things of the day:
My sister's partner designed placards with pictures of Steven from our Blackpool holiday.
My friends Shelley and Mark designed the fliers and badges to hand out. (When I reported that on Facebook, I did a typo and wrote "Shelley and Mark turned up with a hundred badgers - I got lots of questions as to what we used the badgers for).
A woman who was the mother of a young autistic boy arrived. It was the school holidays but she had used some of her valuable respite to arrange care for him to enable her to attend the vigil.
Steven's old school caretaker turned up and reminded me that Steven used to serenade him with "Ground Control to Major Tom".
A guy with aspergers arrived and wouldn't let go of my hand until I promised that I wouldn't let them take Steven away. A similar thing had happened to him five years earlier and it took him three years to return to his family.
People from Steven's gym came over and turned the gym foyer into a Get Steven Home event.
Jean, who runs the Mencap Pool, came and took fliers down to the shopping precinct. She even got HMV to play Mama Mia at 2pm.
Two of my clients turned up having read the story in the local paper and said that as I'd helped them, they now wanted to lend their support for me.
The local paper and Private Eye followed up their earlier stories with a report of the day
And hundreds of complete strangers stopped for a chat and to sign the petition.
Amidst all the bleak moments of 2010, it was an oasis of beauty.
Saturday, 26 April 2014
Story Forty Two - Michael Buble's Hair
Ever since Steven was a nipper, he has had a thing about smelling hair. He only asks to smell, mine, his mother's and his longest term support worker's hair. It's a quick sniff and it kind of reassures him somehow. The Unit didn't like this and decided that it had to stop. They deemed it inappropriate. I'm not sure if it is or it isn't and I didn't want to try and block Steven from smelling my hair. It was harder for the direct payment worker because although he was my employee, he knew that if he didn't comply, the Unit would contrive a way of getting rid of him. Steven didn't understand why Chris was suddenly saying "no" and it led to some difficult moments between them (all logged by the Unit of course).
The Unit conflated the hair smelling with another of Steven's habits, which is asking what a famous person's hair smells of. You give him an answer (Marmite, Sprouts, Farts etc) and he goes away happy. But the Unit felt that because this was about hair, they should refuse to answer Steven whenever he asked the question.
One day I went to visit and heard the commotion whilst I was still walking down the road. When I arrived, I was told that Steven had thrown a glass of milk over another resident and had kicked the office door, leaving a hole. He had been sent to and locked in his room until he calmed down.
They didn't want me to go to see him in his room because I "might be at risk". I told them not to be so daft and in I went. Steven had ripped his t-shirt in his agitation.
He screamed at me: "Dad - Michael Buble's hair smells of?......."
I replied: "Michael Buble's hair smells of Fruit Pastilles Steve".
He calmed down.
#107days #justiceforLB
The Unit conflated the hair smelling with another of Steven's habits, which is asking what a famous person's hair smells of. You give him an answer (Marmite, Sprouts, Farts etc) and he goes away happy. But the Unit felt that because this was about hair, they should refuse to answer Steven whenever he asked the question.
One day I went to visit and heard the commotion whilst I was still walking down the road. When I arrived, I was told that Steven had thrown a glass of milk over another resident and had kicked the office door, leaving a hole. He had been sent to and locked in his room until he calmed down.
They didn't want me to go to see him in his room because I "might be at risk". I told them not to be so daft and in I went. Steven had ripped his t-shirt in his agitation.
He screamed at me: "Dad - Michael Buble's hair smells of?......."
I replied: "Michael Buble's hair smells of Fruit Pastilles Steve".
He calmed down.
#107days #justiceforLB
Friday, 25 April 2014
Story Forty One - Burns
One Sunday morning, one of Steven's regular support workers and I took Steven to the Mencap Pool. Whilst in the changing room, we noticed that Steven had a nasty burn mark on his bum and another on his lower arm. Steven said he burned it on the oven at the Unit.
I left it at that but the support worker was very concerned how he came to burn his bum on the oven. He must have had his pants and trousers down at the time.
We spent all day speculating how it could have happened and what to do about it.
In the end, to my shame, we decided to do nothing. All year long my concerns about anything were ignored and me and Steven just became labelled as the problem. I knew that if I asked them to look into it, either they would do nothing or if they found something untoward had happened, they would cover it up and make Steven pay the price.
It was called survival.
#107days #justiceforLB
I left it at that but the support worker was very concerned how he came to burn his bum on the oven. He must have had his pants and trousers down at the time.
We spent all day speculating how it could have happened and what to do about it.
In the end, to my shame, we decided to do nothing. All year long my concerns about anything were ignored and me and Steven just became labelled as the problem. I knew that if I asked them to look into it, either they would do nothing or if they found something untoward had happened, they would cover it up and make Steven pay the price.
It was called survival.
#107days #justiceforLB
Wednesday, 23 April 2014
Story Forty - The Binders
In the year Steven was in the Unit, he filled up 6 lever arch binders. For the first few weeks, these binders used to drive me bonkers and they created a lot of tension between me and the social worker and the Unit manager. I wasn't allowed to read them.
The official line was that if I read them, it would breach the confidentiality of Steven, the staff compiling the logs/reports and any other person named and written about in the logs.
All the staff and the support workers were allowed to read the logs. Any visiting professional was given full access to them. The only person who wasn't allowed to see them was me.
On one occasion the social worker was going on about Steven's choices and encouraging him to make choices about his life (Oh yeah!) Feeling rather belligerent, I asked her whether we could give Steven the choice as to whether I read his logs. She replied that this wasn't a choice that was his to make.
I said that the main reason I'd like to see them was that it would help in conversation with Steven - we could talk about things he'd been up to. That cut no ice and she reminded me that any feedback or information must come through her or the Unit manager. So, there was an unease about Steven and I talking about normal day to day stuff. I just felt that they must have an awful lot to hide if they were so worried about Steven talking to me about how his day had gone.
After a couple of months, I gave up on the log. Partly it was because they couldn't actually stop Steven talking - I'm not talking him revealing Unit secrets - just the normal stuff of his day to day life. And most of the support workers had given up on Hillingdon's rule that we weren't allowed to speak to each other, so they would tell me the stuff they considered important.
But the biggest reason for giving up the binders was that they were a pile of shite. I couldn't trust any of the information they contained. The logs were just a tool for Hillingdon to build up their case. They bore no resemblance to the reality of who Steven really is.
But then who's life could stay real when it is reduced to the sterile, clinical recording of a log.
The official line was that if I read them, it would breach the confidentiality of Steven, the staff compiling the logs/reports and any other person named and written about in the logs.
All the staff and the support workers were allowed to read the logs. Any visiting professional was given full access to them. The only person who wasn't allowed to see them was me.
On one occasion the social worker was going on about Steven's choices and encouraging him to make choices about his life (Oh yeah!) Feeling rather belligerent, I asked her whether we could give Steven the choice as to whether I read his logs. She replied that this wasn't a choice that was his to make.
I said that the main reason I'd like to see them was that it would help in conversation with Steven - we could talk about things he'd been up to. That cut no ice and she reminded me that any feedback or information must come through her or the Unit manager. So, there was an unease about Steven and I talking about normal day to day stuff. I just felt that they must have an awful lot to hide if they were so worried about Steven talking to me about how his day had gone.
After a couple of months, I gave up on the log. Partly it was because they couldn't actually stop Steven talking - I'm not talking him revealing Unit secrets - just the normal stuff of his day to day life. And most of the support workers had given up on Hillingdon's rule that we weren't allowed to speak to each other, so they would tell me the stuff they considered important.
But the biggest reason for giving up the binders was that they were a pile of shite. I couldn't trust any of the information they contained. The logs were just a tool for Hillingdon to build up their case. They bore no resemblance to the reality of who Steven really is.
But then who's life could stay real when it is reduced to the sterile, clinical recording of a log.
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