Sad Times

On Wednesday I got the sad news that my wife, and Steven’s mother had died suddenly. We have to wait until the middle of next week for the coroner’s report but I alerted the police on Wednesday morning as she hadn’t responded to a few messages I’d sent her, which as unusual and I had a bad feeling something was wrong. The police came to see me at work a couple of hours later to inform me that they had found her at home. It looks like she had an accident, but we’ll know more next week.

It was very hard breaking the news to Steven. At first he wouldn’t believe me – “Mum’s not died!”. Steven’s understanding of death is that you don’t see the person anymore and they go to heaven to be with other people who have died. He also wants to know what the person has died of (“…. had a bad…..?”) and then follows up with (“Bashed it on the…..?). Unfortunately, where Julie was found taps into one of Steven’s big fears, so I kept it very vague. Once it sunk in, he talked about Mum meeting up in heaven with granddad Lionel and Freddie Mercury. And then there was a horrendous hour of him needing reassurance that I’m not about to die. And then, ever the practical, he wanted to know who would open his presents with him on Christmas morning. It was heart wrenching. Since then, he has been very up and down. As we’re still in the detox of the medication, his anxiety levels have been up the last couple of weeks but this has sent them soaring.

As I’m often critical on here of social care, I want to say a massive thumbs up to Steven’s social worker. She phoned me yesterday morning to discuss the meeting the other day. I told her the news. Half an hor later, she called me back to say she had arranged 12 immediate overnight cares to help me out. That was great and I was very grateful. I’m not sure that it will help with sleeping but it will ease my feeling that I’m totally on my own should Steven have a meltdown in the middle of the night.

I went to visit Julie’s sister and our niece this morning and it was nice to talk things over and reminisce. They are taking charge of notifying all of her family and they also volunteered to have the funeral from their house. I’ve been pacing about because we can’t do anything until the coroner reports but they asked me to deliver the eulogy, so I started to plan that. Coming back, I got off the bus outside the Civic Centre and felt a burst of rage about the housing shit from last year. All that stuff about there being no relationship between me and my wife, and now I’m seen as her next of kin, so all the paperwork and everything falls on me. As usual, I feel my first priority is to Steven and I know he’s going to find it very hard, so I want to be around to stick to his routines wherever possible. If that means things take longer to sort out, that’s the way it has to be.

The worst thing will be sorting out the house – our old family home. Julie was a hoarder, so I’m sure it will bring up loads of stuff as we go through everything.

Sad times.


The Personal Budget Review

This morning we had the review of the Personal Budget – 8 weeks post implementation. I can’t say that anything especially bad happened. It was the usual stuff of extraordinary controlling behaviour and total lack of understanding of the life of the person receiving the budget or of the person they’re expecting to manage the budget. I wrote some headlines about the meeting on the Get Steven Home facebook group and someone commented they felt really “despondent” after reading it. Spot on word. Since getting home this morning, I’ve felt very flat, very tired and very sad. All the symptoms of despondency I guess.

I suppose if you live round here, personal budgets can work but it relies on you being able to do two things: (1) you have to accept that the whole system is based on distrust, and (b) you have to accept that the main selling points of personalisation, i.e. choice and flexibility, are an illusion.

I can see that personal budgets are completely inaccessible for people without a carer. I can see that personal budgets are completely inaccessible if you want to have some control over how you live your life and use your budget. I can see why many people chose not to avail themself of a personal budget – the distrust you encounter and the sheer volume of work generated by them is probably not worth the effort. For a personal budget to work you have to accept that you have no control over the allocation or the expenditure of the PB and that you will be agreeing to a level of surveillance not seen since 1984.

I arrive for the meeting with all the records I’ve kept over the past eight weeks – bank statements, pay slips, tax records, contracts, the log book for the taxi cabs, time sheets. The recurring theme throughout the meeting was: “but how do we know you’ve done what it says here?” The bank statements show the amount, date of payment, name of worker and their national insurance number – The council wanted proof that the money actually went into their accounts – “The money could have gone anywhere from your account”. The same with the pay slips – “How do we know that this money was paid to them?” What can you say to that? What am I doing with the money if I’m not using it to pay the support workers? Do they really think I’ve invented five imaginary support workers and am funding a jet set lifestyle out of the PB?

The log book for the cab fares wasn’t good enough, even though it was their idea originally. Same old, same old again. The log book shows the journey, the fare and the signature of the cab driver to show he received the fare. Once again, the refrain was “but how does this prove the money actually went to the cab firm?” They now want the cab firm to issue an invoice, which I think takes us into contract territory, for which there will be a charge.

They weren’t happy about me doing one off payments to the workers. I pay them on a Monday for the work they did the previous week. I normally set up the online banking payments at the end of the week and put a payment date of the following Monday. It takes me about half an hour. Last week, one of the workers had to take a day off suddenly, so I had to ask one of the other workers to cover his shift. Because I’d already set the payment up for that week, I did a one off payment, also paid on Monday to cover the additional shift. I was told that is against the “rules” – if I miss a pay run, then it will have to wait for the next one. So, the guy would have had to wait two weeks for a shift that he agreed to do at short notice. It seemed so petty and absolute nonsense but epitomised the incredible control the council still want to have.

I’d done the same thing three weeks earlier and that led us into another discussion where I’d broken “the rules”. The only downside of Steven coming off the medication is that he is sleeping less and we had three nights running where we got about 4 hours sleep (over the three nights). I was flat out, so tired that I could barely string a coherent thought together. I booked myself into an airport hotel (I had to reassure the council that I didn’t use the budget to pay for the hotel). Because I’d already used my respite allocation for the month, I shaved three hours off the normal weekly support hours to pay for a worker to do an overnight. That is not allowed. Respite allocation is for respite only. Normal weekly support hours is for normal weekly support. I can’t make a best interests decision and move funds around in the one off interest of Steven’s care needs.

That upped the control levels a bit higher. They now want to see the time sheets monthly. They will scrutinise them to see that the hours the workers sign for match the hours I specify on the payslips (which I’ll also have to submit monthly). They then want to see the bank statements monthly, so they can match the time sheets and the pay slips with the bank statements. There is a big irony here – not so long ago, the council would be doing all this work themselves but now they’ve shipped it out to their punters by expecting them to manage a personal budget, they can’t let go. Our council taxes are paying for this massive amount of surveillance.

I don’t see any choice. I don’t see any flexibility. I don’t see anything person centred about all this. It’s just a stinking cesspit of distrust and control. Someone said to me earlier that this is all projection on the council’s part and I’m sure they’re right. The personalisation scheme is run on a total lack of integrity, but rather than own that, it gets projected onto the poor service user and the person managing the budget for them.

Next month, I’m speaking about personalisation at a conference. I wish I had the balls to finish today’s meeting with: “Thank you so much for giving me so much material to use in my talk”.

Where do I go from here? I have to do it in a way that works for me as I’m the person who has suddenly been landed with all this extra responsibility. And I’ll do it in a way that works for Steven. And works for the support staff. And if that isn’t good enough, or I continue to break the rules, so be it. We can always go back to the old way of managing the care package – I might get a few hours back each week to do something more interesting and less stressful. It does strike me as so sad that the stress isn’t managing the budget – that’s a piece of piss. No, once again, the huge stress is the attitude and behaviour of the people who are meant to be facilitating personalisation.

Update (28th May)

This is last night’s dream. I was with a group of people, visiting a place rather like Kew Gardens. The Guide took us to a hothouse. We were not allowed to go inside as he said it was quite dangerous but we could view the action from outside. There were a number of triffid like creatures inside the hothouse. The Guide asked for a volunteer to go inside the hothouse for a demonstration of how the plants reproduce. A young lad in a wheelchair put his hand up. He was taken inside and left close to one of the larger plants. Suddenly the plant turned round to reveal it had a large sprinkler type attachment halfway up its body. The sprinkler started to spray heaps of shit all over the lad in the wheelchair. When the plant had finished the lad was wheeled out to clean up. The rest of us continued to watch from the outside and the plant started to grow and also, little pods sprung from it and formed into baby triffids. The Guide explained that to grow and reproduce, the plant needed to shit and spread its shit.

I love my dream world.

Pesky Ghosts

“Why are you frightened – can’t you see that It’s you.
That ain’t no ghost – it’s just a reflection of you”.

Just when I think I’ve buried the ghosts of 2010, something will pop along and I find a phantom in my head gets reactivated. It’s normally something quite trivial that sets the ghosts off. And then I find myself occupying a space (usually a head space) that is all too familiar from that horrible year.

It happened the other day. Steven goes swimming four times a week. On Tuesdays and Thursdays he goes to the David Lloyd Health Club and on Friday evening and Sunday morning he goes to the Mencap pool. They set off on Tuesday but when they got there, discovered that the pool was closed for three weeks for refurbishments. In a few weeks time, the Mencap Poll will be closing for a couple of months to have a new roof put on. Considering swimming is Steven’s favourite activity, this is going to leave a big hole. We can’t go back to Virgin Active after the run-in with the water aerobic ladies and Steven finds municipal baths a bit difficult – too many people and hard to get a routine going there. So, on Wednesday night I asked him if he fancied some other swimming venue for the times when the normal places are out of action:

“Get a man’s paddling pool for the back garden”, was his reply.

It’s a good idea. For the first time in 6 years we now have a back garden and it’s quite a large one too. BUt within seconds of Steven mentioning it, I found myself fearful. Fearful of how a paddling pool for a 24 year old would be viewed by social services. It ties in with the “potential” stuff I was writing about the other day. The social worker used to be quite critical of a lot of the things that Steven enjoys – Gladiators, Mr Bean, acting out scenes with his model figures – she felt they were too young and that he needed to be “showing a greater maturity”. (I never told her that I was playing with my Subuteo set well into my thirties). It didn’t last long but I had a fifteen minute session of nonsense inner arguments – “Don’t tell them about the paddling pool”. “But they’ll come round and see it in the garden and that’ll make it worse because they’ll know I’ve hidden the purchase”. “Fuck ’em – it’s Steven’s wish”. “Yes – but they might argue I’m not acting in Steven’s best interests by letting him spend his money on a paddling pool”. It went on and on.

Eventually, I spotted what I was doing to myself and locked that ghost away. I started to search for paddling pools and found a large one that ticked all the boxes. But as I was scrolling down the page, I noticed some hot tubs – some of them not much more expensive than the paddling pool. Steven loves a hot tub, so it would be an ideal buy. Then the second ghost appeared. In 2010, I couldn’t make any decision for Steven, small or large. Everything had to be run by the Unit for their approval or permission. I remember having to ask them if Steven could visit his mother on Mother’s Day on the way back from the Mencap Pool one Sunday. They refused because her home hadn’t been risk assessed. If I brought anything for Steven (new CD, DVD etc), I had to hand it into the office first for them to decide if he could have it. I found it impossible to retrain myself to do that and frequently came a cropper. I wasn’t being belligerent. After 19 years of making all the big (and small) decisions in Steven’s life, I couldn’t get my head round the idea of having to check if he deserved the new Pet Shop Boys CD.

So, back to the hot tub and I found myself asking all the support workers their opinions. I guess that is not a bad thing as it helps them feel involved but the truth is that I didn’t need to. I didn’t ask them because I wanted their opinion – I asked them because some 2010 reflex had been triggered off.

Thankfully, these fearful thoughts didn’t last long – about an hour. I suddenly realised what I was doing and gave myself a good slap round the face. I’m not blaming anyone from 2010 for the fact that I revisit the ghosts – they are my ghosts and I am still learning how to spot them and banish them.

I’m going to order the hot tub next week. I suspect the ghosts will last longer than the hot tub though.

D Day For The Personal Budget

Here is the letter I sent to all the people who will be at the review meeting next week, to review Steven’s personal budget:

My Position for the Meeting on 27th May re Steven Neary’s Personal Budget

When I offered to receive payment for Steven’s care package via a personal budget, my main motivation was to secure a budget for the long term future that would meet all his assessed needs.

I was horrified to hear about the enormous profits the care agency and the cab firm were making from commissioned services. It seemed to me to be a real risk that Steven’s budget would be cut significantly as paying the pre April 2014 monies was unsustainable. I also felt that it was morally suspect for companies to be making such huge profits out of Steven’s disability. Nobody was challenging the agencies about these practices but the consequence could have been that Steven would have lost out through no fault of his own. You will remember that I tried to negotiate lower rates with both the support agency and the cab firm but, right until it was too late and the new personal budget had been agreed, they were not prepared to sacrifice their greed to enable Steven to get the support he needs.

At the same time, the staff from the agency were feeling very discontent. They were on very low hourly rates of pay and receiving payment from the agency was extremely erratic. These are guys who live a hand to mouth existence and there were several times, when their pay was very very late, that I would lend them the money, just to enable them to fund their travel to work. With a personal budget, I had perhaps the naive idea that I would be able to pay them a better rate than they received from the agency and I would pay them regularly on time. I hoped by offering them this respect, I would be able to retain their invaluable services to Steven. To date, it has worked exceptionally well and I know they appreciate the lengths I have gone to, to ensure they are remunerated well and on time for the hard work they put in.

Since the Personal Budget has started, I have encountered several problems because my preferred way of managing the budget does not accord with the way Hillingdon seem to want it run. I believed, perhaps again naively, that Personalisation was about giving the service user choice, more control and flexibility. Frankly, although I don’t find running the budget at all arduous, the opposite of those aims seems to be the case. It appears that there is only the one way, the preferred Hillingdon way of managing the budget and anything else is considered unacceptable.

In agreeing to a Personal budget, I have suddenly become the employer of six people. I have about four hours each week free when I’m not caring for Steven or at work. Any arrangement to manage the payroll has to fit in with my time limitations. I find that Hillingdon’s choice to put the PB onto a prepaid card and then for me to have to pay the workers directly from the card inflexible and not in accord with the pay arrangements I want to have with the workers. The council uses a BACS system to move the money around and it takes five days to move money from the prepaid card to wherever it is going. I find that rather antiquated and unhelpful considering the limited time I have available to manage the funds. It is far easier for me to transfer a lump sum at the start of the month from the prepaid card into my direct payment account and then pay the workers, via online bank payments, from the DP account. That way, I can make a payment that will arrive in their accounts within two hours, or I can specify a date that I want to money to be moved. I cannot begin to explain how useful that is when I may just have 30 minutes one week to make the payments. But with the flexibility of on line banking, I can ensure that their salary for the previous week is in their bank accounts on a Monday morning. The prepaid card company also charges 50p per transaction, so I am saving a small amount of money by making just one (50p) transfer a month.

In the contract, the council stated they expected me to pay the workers monthly in arrears. This is a big change from their previous pay arrangement where they were paid weekly. It is difficult to ask people who are totally reliant on the money from their work with Steven to suddenly change the frequency in which they get paid. I am prepared to pay them weekly, and in fact, have been doing so. I’m aware that if I was doing that by the prepaid card, I would be using £3 each week in charges and the budget doesn’t cover that amount. However, by making a transfer from the card to my designated DP account once a month, I am not incurring those charges; in fact, I am saving £11.50 each month.

So, to reiterate, I am only happy to continue receiving a personal budget if I can manage it in the way I have outlined above. The council talk about having “a transparent trail” to see that public funds aren’t being misappropriated and that is perfectly viable with my preferred way of operating the budget. My online statements show for each transaction: the amount, the date it was paid and the name and national insurance number of the recipient. That is more transparent than the old system, which only showed a cheque number. I appreciate that with my way of working you will be unable to operate the online surveillance of the card that you’d prefer but a transparent trail isn’t compromised by my approach.

One other point – you have said that you expect to see the support workers’ personal bank statements to ensure transparency. I felt uneasy about this and checked with the Information Commission who felt this was “excessive”. The records you will receive include their name and NI number. Their contracts include all the personal details. Surely, that will be sufficient.

If my way of managing the personal budget is unacceptable to Hillingdon I am perfectly happy to go back to the old way of receiving the care package funds. It is no skin off my nose at all but will inevitably, be more expensive that the new budget. It would mean Hillingdon commissioning services from the agency and the cab firm again but that shouldn’t be too problematic as I know the current support workers are still registered with the agency, albeit they aren’t doing any work for them at present. And our new cab firm are sure to agree to a contract with the council but that may also increase the costs because they are doing it for me without a “contract charge”.

I’ll leave it up to you to decide and we can discuss any questions you may have and what your final decision will be at the meeting next week.

A Challenging Challenge

In writing the daily blog for the #107days campaign, I’ve been rereading all the social care records from 2010. By far and away, the word that crops up most in the thousands of pieces of paperwork is “risk”. But following very closely behind is the phrase “challenging behaviour”. Oh, how I loathe that phrase. It’s a con. It’s a cop out. It encapsulates the worst of the lies of modern life. And how it fucks over the person (usually autistic) that is diagnosed as having the challenging behaviour.

Whenever the topic is discussed, you’ll always have someone earnestly say: “I don’t like the expression ‘challenging behaviour’. I prefer ‘behaviours that challenge'”. Which of course, sails straight pass the point.

I cannot begin to guesstimate the number of people involved in the challenging behaviour industry. For starters, there’s the behaviourists who can fit anything into their tried and tested model. They will focus on “antecedents” but miss the obvious antecedent that the person’s absolute truth has just been ignored, misunderstood, misinterpreted or dismissed. The industry is too deeply unsettled by a person expressing their absolute truth, so instead turns it into a need for positive behaviour support. Your negative actions (your truth) can only be dealt with by my positive support (my lie).

Then along comes the pharmaceutical industry who are old hands at coming up with conditions that suppress or deny human truths and conditions that only their products can help with. Normal life experiences, normal developmental crises, let along peoples’ truths are pathologised and a drug is prescribed to treat the condition that they have invented. In expressing their reality, the person is left with an endorsed drug habit that may possibly kill them. Either way, their truth has been silenced.

And then the whole social care industry pitches in with its behaviour management plans, risk assessments, deprivation of liberty safeguards – the list goes on and on. And all because the person expressed the 2014 equivalent of “the king’s got no clothes on”.

Millions and billions of pounds. Sustained that someone has behaviours that challenge.

Here’s the story that I often quote from Steven’s person centred plan planning meeting:

“So, what would you like to do Steven?”

“Want to go and see Toy Story 3 at the cinema”.

For a split second, he feels hope, excitement. He starts to form a plan.

“No. You can’t do that. The risk is too high”.

Steven throws a cup of apple juice that he is drinking across the table.

A multi disciplinary meeting of positive behaviour aupport analysts, psychologists, social workers, speech therapists, occupational therapists is set up to look at ways of recording and responding to this challenging behaviour.

So, here’s my five contributions to the debate on a more apt term to describe the behaviour that folk find so challenging:

1. My absolute truth, behaviour.

2. You’ve got it all wrong mate, behaviour.

3. Why are you so threatened by my view of the world, behaviour.

4. You’re living a great fat lie, behaviour.

5. This is not about me – this is about you, behaviour.

We used to have asylums. Now we have drugs and positive behaviour support to control us. It doesn’t feel like we’ve come an awful long way.

A Proliferation of Partnerships

On the day that Private Eye ran the stories that G4S has been awarded the Help To Work contract by the DWP and Barnet council has handed the running of its cemeteries to Capita, my two stories will seem rather small fry. How can I compete with Capita’s statement that “processing of the deceased” is an “opportunity pipeline”. But I’ll try because today I’ve encountered two frustrating examples of that most modern of modern ways of doing things – partnership working.

Yesterday, small drops of water started coming through my bedroom ceiling. A wet patch started to spread with alarming speed across the ceiling. The Housing Association were on to it like a shot and within two hours, a bloke from the maintenance company they’ve contracted to do their maintenance work (working in partnership with drips?)was up in my loft. Not good news – there is a hole in the roof. And neither party in this partnership deal with rooves. That is down to the owner of the property. Hold it right there. The housing association aren’t the owners? No. This is how it works. The council has a duty to house Steven and he joined the council waiting list. Unfortunately, the council doesn’t have the housing stock for its homeless residents. So, the council sets up a partnership with a housing association who do have a housing stock. We move in. Then today, we discover a third party in the partnership deal – the owner of the house we’re living in. (I don’t know if Steven counts as a fourth party in the partnership as he’s the tenant. I suspect not – he’s not important enough. All I want to know is, out of this holy trinity, who is responsible for roof repairs? One of the great bonuses of partnership working is that it becomes nigh impossible for those on the receiving end of the service, to find out where the responsibility for anything lies. Public services have become like convoluted private equity firms, where tracing ownership is impossible. It works a treat.

Later, I had to go into Uxbridge to pay the direct payment tax bill(another of the joys of personalization). Sitting outside Gregg’s was an example of Hillingdon’s non building based drop in services. Half a dozen service users crammed around one table. Two staff from the agency contracted to facilitate outreach services, were spread out on an adjoining table. A third worker was plugged into a fascinating text exchange by the scones. I stood there for ten minutes and not a single second of engagement took place. One guy spent the whole time trying to unwrap a sandwich. Another guy was caked in jam from several doughnuts.I remember the announcement in my carer’s newsletters about the exciting possibilities this partnership between the council and the agency would bring for the service user. I’m sure that the agency are quids in and the council has managed to rid itself of another pesky service that it has a statutory duty to provide. I can’t for the life of me see what is exciting for the service user in this modern way of working.

Coming home I saw a poster advertising a “carer’s fair” next month. It is being run by several local charities in partnership with the council. On similar lines I’ve got the review of the personal budget next week and one of the people attending is from a local disability charity, who are in partnership with the council to provide “personal budget support”. Its a massive win win for the council – they get shot of a job they don’t want to do (provide support for the recipients of their personalization scheme) whilst getting the charities well and truly in their pockets. As I learned in 2010, even though these charities exist to support the disabled and their carers, they can’t actually do that for fear of upsetting their paymasters.

A final gripe – I don’t like the phrase ” working in partnership with families”. That’s not how its meant to work. In public service, you’re meant to serve. That is the deal of that partnership.

The 3a.m. Conversation

It feels odd and slightly weak that I’m writing my second post in a week about sleep but it’s starting to rule my head.

It is now four weeks since Steven last had any antipsychotic medication. The consequences have been phenomenal. I’m trying to not get too anal about the weighing scales. Once a fortnight is more than enough. But since we started cutting back the meds, Steven has lost just under four stone. If his liver is going to repair itself after years of lazy psychiatric intervention, this seems to be the best way to go about it.

As the weight loss becomes more and more visible, I find myself swinging between joy, anger and deep shame. The joy is obvious – Steven is finally being allowed to be his uncoshed self. The anger is directed at all those professionals over the years who have valued Steven’s life so dismissively, they have allowed him to reach a point where he has a life threatening condition. And anger towards the drug companies, who have reprogrammed nations into believing the only way to deal with normal life difficulties, is to reach for the pill box. I’m ashamed because I have been complicit in all of this. I’ve attended meetings with psychiatrists, social workers and dieticians and smiled sweetly when they’ve told me that I’ve got it all wrong – the huge weight gain isn’t down to the drugs but down to my denial about food issues.

Sleep. Now that Steven has come alive again, I’m having to face the reality that he can get by on very little sleep. For four weeks I’ve been trying to manage on about four hours a night. Last night between 11 and 1am, Steven kept up a running conversation from his bedroom. He went through every Take That video and what each member was wearing in each video. “Love ain’t here anymore- Howard Donald was wearing a white shirt and white waistcoat and white trousers”. And then he expected me to repeat everything he said, back to him. After two hours, I was climbing the walls. I knew that it could set off a meltdown but I got up and went downstairs for a drink. I switched on the TV and tried to get involved in some dreadful 2am game show. After 20 minutes, Steven joined me and carried on the conversation until we got to ” Love Love”. By 4am, we were back in bed, just in time for the support worker’s arrival at 6am.

People keep telling me to reintroduce the tablets. No way. He’ll be dead by thirty if I did that. And it doesn’t feel right to douse Steven so it’s more convenient for me.

I am hoping it will level out after a while. In the meantime, I’m going to disobey the personal budget people and move some hours about, so I can get a midweek respite night, just to catch up on some sleep.

Now, I just need to find a room somewhere so I can get that sleep.