Budgets? Fudge It

That’s it. I give up. I hereby put on record that I have absolutely no idea how direct payments/personal budgets/individual budgets/FACS budgets actually work. Are they as completely random as they seem to me?

I keep reading wonderful stories in the press and online of how people use their budgets in extremely “creative” ways. I keep seeing events advertised that promote the “innovative” use of budgets. Personalisation is where it’s at man, and your budget will open doors that have remained firmly shut up until now. Last week I read the story of the young autistic man who loves going to war reenactment events and used his budget to attend them across the country and pay for a support worker to accompany him. They applied to use their budget to buy a camper van to save on the hotel bills. The whole story was presented through the prism of a real personalisation success story. There is an “Inclusion” group on Facebook who regularly post stories of using their budgets for big adventures – canoeing weekends in Iceland (the country, not the shop); ballet dancing lessons; season tickets to watch their favourite teams.

I read these stories with a degree of incredulity because they run alongside stories of people who cannot a budget at all, or people (like myself) for whom the budget is rigidly controlled by the LA. It may because I’ve been programmed over the years by Hillingdon but I also feel a trifle uneasy about the money being spent on white water rafting holidays. I don’t feel uneasy about the person having the holiday, or spending their personal budget on the holiday. BUt surely, the holiday is a one off – what do they do for the rest of the year? How are they supported? What does the rest of their week look like if the budget is going on one weekend activity?

Regardless of what the budgets are used for, there seems to be a hugely inconsistent way in which they are calculated. My LA calculates its direct payments using an hourly rate – £10.72 an hour. That is fine if you are using the budget to pay for a support worker and pay them by the hour. BUt the purchase of a camper van doesn’t come in hourly rate packages – one van: one price. So, do the ballet dancers get one amount to cover the cost of support to their classes and then a further amount to pay for the class itself. If not, how is it worked out?

There is also a confusing inconsistency within the same LAs. Steven started receiving direct payments towards the end of his time in Children’s services. He was allocated 6 hours per week (approx £63). We employed a support worker for three hours a week to take Steven to the Mencap Pool on a Friday night. This was at the time, shortly after going onto medication that Steven’s weight started shooting up. I asked his social worker if I could use the other £30 to pay for a personal trainer for Steven. I still have his written reply, that this was “an excellent, imaginative use of resources”. Fast forward two years and Steven was “transitioned” into adult services, where I was told in no uncertain terms that direct payments could not be used to fund a personal trainer. It was quite threatening actually, with the slight hint that I had been defrauding them for the previous two years.

The same thing happened a couple of years ago. We were in the middle of their respite game, where Hillingdon were insisting that the only respite option they would consider funding was the place where Steven had been unlawfully deprived of his liberty the year before. During the protracted game, I used a tiny amount from the direct payment budget to pay a support worker to do an overnight shift once a fortnight, enabling me to have two nights a month off. My knuckles were rapped again and I was told “the budget hadn’t been agreed for this purpose, nor would it be agreed for this purpose”. The budget was immediately reduced by three hours per week.

The bottom line is that my experience of direct payments in Hillingdon is that they are rigidly calculated and controlled and can only ever be used to purchase the services of a support worker. As a wheeze, I am tempted to tell them that I am reducing Steven’s “community support ratio” from 2:1 to 1:1 and using the saved money to purchase a Winnebago. Just to see how outraged their reaction will be.

Because of the rigid adherence to calculating budgets using an hourly rate, I get very confused during the “Fairer Access to Care Services Assessment”. The focus in the assessment is on need – not on a timetable. We’ve not been RASd yet but I know the council have calibrated (?) their resource allocation system using the current direct payments rates. It will be interesting to see how the identified needs are converted into a budget using the same payment rates as have been used for years. Surely, as Steven’s needs haven’t significantly changed, his new personal budget should come out at exactly the same amount as his old budget. Somehow, I don’t think it will be like that! And that brings me back again to how the camper van requests are fed into this process. In the highly unlikely event that Hillingdon identified a camper van as a need, I can’t begin to see how the RAS will cope with converting the cost of the van into the overall budget. I suspect this may be a mission for Panel.

Lastly, from our research for the Carers Solidarity group last year, it transpired that some LAs are awarding carers a direct payment following a carers assessment. On the whole, they tended to be small, one off payments (or as one commentator put it – “buy you off payments”) for things like “pampering days”. Treats rather than needs. I’m not entirely convinced that a carers assessment is even remotely interested in identifying a need – it seems to have an altogether different purpose. I’d be very interested to hear from any carer who has received a regular direct payment for themselves – what was the need that was identified? How was it calculated?

So, as I said at the beginning, I am retiring from trying to make sense of the whole personal budget business. Not because it is too complicated – but because it is haphazard. As I’ve shown, there are different rules within the same authority, so it’s pointless trying to compare schemes across the country.

Rant over. I’m off to “We Buy Any Car Dot Com” to check out their latest in camper vans. And if I get one, I might just christen it Priscilla.


Managing Uncertainty – the Steven Neary Way

Steven seems to have moved into a new phase in his thinking around the house move/non move.

You may remember that for the past four months, the council had been promising a move to a tenancy in Steven’s own right by the time our tenancy expired here on 15th August. Steven was all geared up to that, although obviously that was triggering its own form of anxiety. 12 Days before the move, the council pulled the plug and did a deal with my landlady for us to stay on here temporarily until they find somewhere. Since then, nearly six weeks ago, I haven’t heard a word from the council. The sudden change of plan plunged Steven into a terrible three weeks of sleepness nights, sobbing, self harming and desperate pleading for reassurance. I don’t think it’s a coincidence that during those few weeks, he received his ban from Virgin Active – he was struggling to manage his anxiety at the time. An awful catch 22 situation – what were we meant to do? – keep him indoors until the move took place.

In the last week though, something has shifted and Steven seems to have parked his anxiety. The house move has now gone into a category of things that Steven sees as “expected to happen but now look like they won’t happen”. Over the years, Steven has put quite a few things in this box.

Steven has a very theatrical, throwing his arms wide gesture and says: “Steven Neary & Mark Neary moving to the new house in September?” I reply: “Can’t move yet cos the men are still painting the walls”. Steven smiles and sums up: “Can’t live in a house with just bricks. We might scratch our arms on the sharp walls”. And that’s the end of that. He brings it up about four times a day but settles when we go through that “script”.

He’s been doing this sort of thing for years. Every year, Steven asks for an East 17 DVD for Christmas (East 17 have never produced a greatest hits dvd). So, every Christmas morning after the presents have been opened, he throws open his arms and announces: “No East 17 for Christmas. Anthony Mortimer’s getting his piano mended”.

Ironically, one of the other items in his “expected but not happening now” box, moved last week. One of Steven’s favourite people at the Mencap pool is a chap called Jimmy Puddle. Jimmy hasn’t been to the pool for over a year. So, every Friday, we go through the routine: “See Jimmy Puddle at mencap pool today?” And then Steven reassures himself that he won’t see Jimmy Puddle as his friend has a bad back. Out of the blue, last Friday, Jimmy Puddle reappeared at the pool. so Steven has had to make a readjustment to his categorising of Jimmy!

So, for the time being (and that is the key phrase), the uncertainty and anxiety about the house move/non move is contained. On the one hand, it’s not right. Hillingdon’s Autism Strategy must be pretty woeful if they think it’s okay for them to treat a vulnerable client with constantly shifting goalposts, uncertainty and silence.

But on the other hand, if it stops the horrible hitting himself and getting a decent night’s sleep, I’m prepared to go along with it.

It’s only temporary though. Like the reappearance of Jimmy Puddle, some day in the future, I’ve got to start preparing Steven for a move all over again.

Costa Del Soulless

This is not a Committee Room 5 story. This is real life.

The first post I wrote for this blog back in April 2012 – “It’s Not What It Says On The Tin” – was about the ever increasing use in the social care world of a language that presents something as a positive development for the service user, whilst concealing a murky agenda that is far from positive. I’ve returned to the theme many times since but this week, something came along that outmurks everything in terms of downright manipulation of the people they are meant to be serving. It is shameful and deeply depressing.

A couple of years ago, my local authority took the decision to close all its day centres for the learning disabled. In their place would be some hubs. This was presented as an extremely positive move because it would “increase service user independence”. A hardy group of parent/carers challenged the day centre closures through the courts, who ruled that the consultation process was flawed and had to be opened up again. Needless to say, the consultation opened and closed again, making no difference whatsoever – the council’s original plans were merely delayed. The day centres closed and the people started to “access” the hubs, which included, the old post office and the local swimming baths. Valuable relationships were lost and as many people found, activities that they used to do at the day centres were no longer available at the hubs. (You can’t prepare a lasagne at the swimming pool). At the same time, the council outsourced its “outreach services” to a private company, which in fairness, most people reckon has been pretty successful in supporting the service users.

This week though, there have been some new developments. The contract for the outreach service has been up for renewal and the council has invited tenders. Nobody seems to have seen the specification for the tender but it appears it included the requirement that there will be “no building based services in the future”. This came as a complete shock to the users of the services, their carers and at least one councillor. No building based services not only means no day centres but no hubs as well! Cranking up the fog machine, thew council announced that they “remain committed to providing a drop in service”. As one parent then put it: “How can you drop in to a building that isn’t there?”. Eventually the cat emerged from the bag and it was revealed that the expectation is that people will “drop in at a coffee shop and access the community from that base”. Another on the ball carer summed it up with: “Costas is not a service”.

At this point, do you think one of the council staff stood up and said: “We’re really sorry folks. You’ve been royally shafted. This is all about cutbacks. The money just isn’t there to run the service as you’d like”.

No, of course not. Quite the contrary. The people were told the “service is being made available to develop and practice social skills”. It doesn’t end there. “The new service looks at the outcomes achieved – what difference the service is making to an individual”.

Right – let’s not beat around the bush. This is not a service provided by the social care department. To claim that it is, is shameful. If people want to go to Costa, they can go to Costa – they don’t need the council to provide that “service”. There is nothing in this new deal that comes anywhere close to “providing a service”.

And what is with the nonsense of “outcomes achieved”? The only outcome is that someone will sit in a coffee shop for hours at a time, spend money they probably haven’t got on their coffee and refreshments for their support workers, and then “access” the shopping precinct where they will window shop until it’s time to go home. It’s not about valuable outcomes – it’s about killing time. And killing life.

It’s a tragedy that the people who used first the day centres, and then the hubs, have now been reduced to this. In less than a year, their lives have shrunk to sitting in a coffee shop five days a week (I’m not convinced that Costas or Starbucks will tolerate groups of people sitting around for hours on end. I was challenged by the manager the other week for finishing my crossword after I’d drank my coffee). It goes without saying that the professionals haven’t shrunk at all – now they have grown. There will probably be a “Category Manager for Services Outcomes” and a whole team of people to monitor the outcomes. And the new company that won the outreach contract will be in the money – but what will they actually have to do.

This has to stop. We cannot keep colluding with these lies. I hope the people affected by this, claim their personal budgets and go to Costas if they want to but not as part of the “outreach service” – no, they go of their own free, independent will.
We have to maintain our self respect and dignity and refuse to engage with such contemptuous manipulation.

Arrival of the Troops

What an incredible day yesterday.

First, I published the blog post “Swallowing a Bitter Pill”. I had genuinely decided to let the housing benefit matter rest.

Then Private Eye published the article following the interview I gave them after the housing benefit appeal tribunal. Thank you so much Heather Mills – you’ve been in our corner since 2010.

The I went off to work at 12 o’clock and the Twitter world seemed to come alive in the same way that Bill & Ben appeared whenever the gardener went off for lunch.

By the time, I got home from work at 8.30 pm, I had 78 emails. Lots of offers from solicitors/barristers offering to take on the case pro bono.

I decided to go with the team assembled by the great Lucy Series. She worked so hard yesterday trying to get people interested and has got together two barristers and a solicitor to work on the case. Lucy found us our solicitor back in 2010, so it feels like a very good omen this time round.

To all the other people offering help or messaging support, I am so grateful.

It must have been nearly 2am before I went to sleep this morning. I always find kindness very enotional, so was a bit if a blubbering wreck well into the early hours.

THank you.

Swallowing A Bitter Pill

Regrettably, I’ve had to decide not to pursue the Housing Benefit appeal to the Upper Tier Tribunal.

I received the judgement from the First Tier, two weeks ago today, so that only leaves another 14 days in which to submit an appeal.

Try as I might, I have not been able to secure any legal representation to support me with taking it further. After the experience with Hillingdon’s barrister at the first hearing, I know there is no way that I will be able to present a case on my own. Even if I got non qualified representation, it may be like the First Tier, where my representative was not allowed to speak.

I did have one hopeful offer of help but was quoted £300 +vat just for an initial meeting. At the very least, there would also be the cost of writing the submission and appearance at the actual hearing to follow and there is no way that I can afford those sort of fees.

If I’m honest, I feel slightly bitter about the lack of interest. Since 2011 and Neary vs Hillingdon, I’ve agreed to many legal firms using our story to speak at events, write about in various publications etc. All the firms involved in 2011, use the story prominently on their websites.

But it’s not really the fault of the legal firms – they are just doing their jobs. Ultimately, this is about the legal aid reforms and how access to justice is closed off for so many people.

I still like to think that we would have had a good chance of winning. There were so many errors of evidence in the first judgement, that I believe they could have been challenged. Also, I was looking forward to challenging the strange weighting the judge gave his decision. Five pages on one of the issues and one paragraph on the other two. Yes, I’m pretty sure we would have had a pretty good case.

So – what now? We are back to having no say about our housing situation. If I had won the appeal, I could have taken matters in my own hand and gone and found us a new flat. As it stands, we are stuck in this hellhole of a flat until the council find Steven a property. It will be five weeks tomorrow that Hillingdon did their deal with my landlady to stay on here until they find somewhere. I haven’t heard a word from them since.

The only good news in all of this is that (I’m touching wood here) Steven’s anxiety about the move seems to have abated in the past week. He has added “Moving to our new house” in his category of subjects that will probably never happen – alongside Abba reforming and Jimmy Puddle returning to the Mencap Pool. He brings up the subject daily, but throws his arms out wide theatrically, which is the sign that he doesn’t believe it’s going to happen.

Except of course, it is. One day.

Update 10.11.13

Just realised that is a year ago to the day that I sat in the council offices and was told they were stopping the HB. I’ve just been advised to write the issue “in a nutshell” to be forwarded on to the UN. Here it is in a nuthsell:

Housing Benefit – Neary Vs Hillingdon

My family consists of myself (Mark Neary), my wife (Julie Neary) who has paranoid schizophrenia and my 23 year old son (Steven Neary) who has autism and severe learning disabilities.
From 1995 to 2009, we lived together as a family in the family home that is jointly owned by myself and my wife.
In July 2009, Hillingdon Council Adult Social Care department gave me an ultimatum. As my wife’s mental health condition was causing increasing problems in sustaining Steven’s care package, if I didn’t move out with Steven, they would remove Steven from our care. It was a horrible decision to have to make but I put the best interests of my son before my wife and moved out.
We moved to a privately rented property and before taking on the tenancy, I checked with Hillingdon’s housing benefit department that we would be entitled to housing benefit. They decided that the property that I jointly own could be disregarded as capital available to me and subsequently awarded HB. This continued until September 2012 and the claim was reviewed several times during those three years.
It is also useful background to know that in June 2011, a judge at the Court of Protection found that Hillingdon had acted unlawfully for the whole of 2010 by keeping my son in a care home. The court found that the council had illegally deprived him of his liberty and breached both his article 5 & article 8 human rights. In 2012, the court ordered Hillingdon to pay Steven damages for this event. I mention this because one month after the damages award, Hillingdon made their decision to stop my housing benefit. Nothing had changed in my circumstances at that time, except for my income reducing after a change in employment.

The Decision:
Hillingdon decided, and the First Tier tribunal agreed with them, that they could no longer disregard the value of the second property and therefore took it that the capital of that property is now available to me. In making that decision, they took three factors into account:
1. My wife is not my partner.
2. My wife is not a relative
3. My son is not a member of my family.
If they had decided that any one of the three points was in my favour, then they could have disregarded the second property and awarded housing benefit.

My Appeal:
My appeal is on the grounds that the regulations are discriminatory to families with disabled or mentally ill members. Although we are living apart, I still consider my wife to be my partner. Our relationship is fragmented and there are very few things we do together but that was also the case when we were living together as a result of hwer mental illness.
The HB guidance, considers a “brother in law”, or a “non blood uncle” to be a relative but not a wife.
Finally, the HB guidance also states that because my son is over 18 and has his own income, he is not a member of my family. That completely ignores the dependency of a learning disabled person on most other aspects of their life.
Also, the decision fails to consider the “exceptional circumstances” of the case. Not only in the specific make up of my family but also that it was the same council that brought about the situation by insisting on the move that four years later stopped my benefit.
The judge stated that he applauded me for putting my son’s best interests first at all times but the non entitlement to HB is a consequence of that.
That cannot be right.

Steven Neary & The Great Works of Art

Since the beginning of the summer, Steven has been coming to my workplace every Monday. I work in a beautiful 18th century building. It was originally a farm house, then a family home and is now home to the local Arts Centre. I rent the library 4 days a week for my counselling practice. Steven uses the music room. He very quickly established a routine – he takes a C90 tape that we prepared the day before. At the halfway point of the tape, he stops for a cherry bakewell and an orange juice. After the tape, Steven and one of his support workers have a sing song around the piano. The I pop to the local cafe and get bacon sandwiches for all for lunch. We then sit in the beautiful maze garden and wait for the cab to take us home.

Steven loves it.

He also quickly made a friend as well. Every other Monday, an art group use the room next to the music room and Steven likes an elderly chap who teaches the group. Today, we were sitting in the garden, waiting for the car, when Steven spotted hs friend leaving.

“Bye Raj”

Raj came over and they shook hands. Steven showed Raj the spot on his hand and got very excited when Raj told him not to pick it in case he got blood all over the bench.

The following conversation took place:

Raj: “Do you know Steven that I’m a painting teacher”

Steven: “A painting teacher”.

Raj: “And because you’re such a good man, I’m going to do you a painting. What would you like me to do you a painting of?”

Steven: “Whistler’s Mother”

Raj looked at me:

Raj: “Sorry, what did he say?”

Me: “He said he would like you to paint him Whistler’s Mother”

Raj: “That’s what I thought he said. Do you know Whistler’s Mother Steven?”

Steven: “She’s a hideous old bat who looks like she’s had a cactus stuffed up her backside”.

At this point, we had to stop Raj falling backwards into the rose bush. We explained the plot of Mr Bean in America and Raj left like a man with a mission.

I do believe that we’re going to get a copy of Whistler’s Mother to hang in our new home.

None of that would have happened if Steven had been taken to a hospital in Wales.

All Aboard A New Reablement Journey

Last week, in Learning Disability Today, a new scheme was launched – “A New Reablement Journey”. (You can read more about it here – http://www.learningdisabilitytoday.co.uk/from_a_service_to_a_life.aspx).

The broad ideas of the scheme sound fabulous and the writer, Ruth Gorman’s enthusiasm for the scheme is definitely infectious. My fear is what will happen to these interesting ideas when they land on Planet Social Care and into the hands of the LA’s efficiency savings brigade. Will it go the same way as most of the other big ideas and get presented as one thing, whilst hiding the real agenda – cutting budgets.

I fear that the writer may have opened the door to potential misappropriation by the language used in the launch (“Oh no, here he goes again. That Neary has always got something or other about language”). It’s frustratingly vague. I’m not even sure if “reablement” is a real word – it comes up as a spelling mistake when I proofread this post”. Is “reablement” from the same family as “enablement” and “empowerment”? And whats with the “re”? Did I have once have ablement, lost it, and have now got it back it again? Do I reable myself? Does someone reable me? I don’t know. And is it just me, but I get a bit cringey at “journeys” – it smacks of Denise Van Outen on Strictly Come Dancing.

When I’ve written about the language of Planet Social Care, some commentators have just picked up on my irritation of jargon. But that’s only a minor point. My main beef is the disguise of the language, or rather what is being disguised by the language. Surely, the best operating principle is that the clearer the language, the less chance it has of being hijacked.

All professions have their own language. I work on Planet Counselling and the climatic conditions there are foggy with terms like: counter transference, unconditional positive regard and locus of evaluation. I like reading other counsellor’s websites to see how they describe their services – “I will accompany you with my empathy as you experience the emptiness and despair of your void”. If I was a client, I’d run a mile from that – “You’re not coming anywhere near my void, thank you very much”. I have never used that langauge with a client, or if I did, I’d make sure they had a short tutorial first on what it meant. “You know your problem Bob – you’ve got a rigid external locus of evaluation”. Bob would think I’ve gone mad. In my professional world the language can be about power but I seldom find that it is used to conceal another agenda. I only ever really come across that in the social care world.

So, good luck to the New Reablement Journey. I really hope it succeeds.

I just wish it had a better name, that’s all.

Update 15.56pm on 15th September

Here is the link to the full New Reablement Journey implementation plan – http://www.imagineactandsucceed.co.uk/Agenda/1-Implementing-the-new-reablement-Journey-IAS.aspx

I’m getting more and more cross, the more I read. Have I got this right? – it’s another layer in the assessment process! LAs will contract out this reablement implementation to an organisation, who take charge of setting up the person’s “journey”. It talks about a more “richer, natural” service but surely it will mean that money will be siphoned off the money available to the service user (as they will be encouraged to use more natural resources other than paid support). That money will then be free to go to the organisation setting up the journey.

Could someone get to the end of this document (I had to have a lie down after “harvesting” and please tell me I’ve got the wrong end of the stick.