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Choice, Control and Obfuscation – How the Personalisation Dream is Dying

In the bold move towards a transformation in adult social care, it feels from where I sit, that control has completely overtaken any pretence of ‘choice’ in the so-called move towards more idealised ‘person-centred’ care and support planning.

I hope I’ve been clear over the years in which I’ve expressed a remarkably consistent view that I love the idea of people being able to choose the support plan they like from a wide menu of options with ‘professionals’ taking less of a role.  I am a massive fan of direct payments. I want people to have more personalised care and more creative care. Desperately. The options just aren’t there yet for people who lack capacity and that is a terrible disservice and inequity that is being served throughout the care system.

Removing care planning from my role doesn’t concern me – unlike those people on the training courses who bang the drums blindly about how wonderful and bright it looks when we allow people to choice whatever they like to put together packages of care, I don’t want ‘retain control’, I truly don’t believe that I, as a professional ‘know better’,  but likewise I know that with the user group I work with, it is rare that I can just hand someone a support planning tool and a list of potential providers and tell them to ‘get on with it’.

That is as far from reality now as it was 20 years ago in my work. While I can say that everyone I care co-ordinate who has a ‘package of care’ is now officially on a ‘personal budget’ and some even have direct payments, it hasn’t really increased choice or control for any but a couple of those people.

If anyone for a moment wants to ponder the duplicitious nature of those in policy making ivory towers who dribble down policies which they want to couch in ‘soft’ language so they are difficult to challenge, one only has to read a fantastic piece of research conducted and published on The Small Places site.

It is worth reading through the piece in detail. Lucy, the author, made a number of requests to local authorities to ask about how their Resource Allocation Systems (the link between the ‘assessment’ and the ‘cash’ – basically) was calculated.  She seemed to come up against a wall of obfuscation but it’s worth looking at her research in detail.

This reluctance for me, seems to relate to the lack and reduction in spending on care and support – the key ‘missing piece’ as to why a council can ‘reassess’ someone as needing less ‘cash’ than they did last year with a more traditional care package.

My personal experience is that the council I work in (and this is similar to things I’ve heard from people in other councils) probably doesn’t want to share it’s RAS because it’s ashamed of the utter dog’s dinner that it’s made of it. It doesn’t ‘work’. It doesn’t make sense. It is frequently changed. There is more emphasis on physical health needs as opposed to mental health needs and while there can be manual adjustments, some of the figures that are ‘spat out’ just seem nigh on ridiculous (and that works for sometimes calculating care ‘too high’ as much as a figure which is ‘too low’).  It comes down to everything needing to be qualified and fitted onto a spreadsheet when actually the needs of two people who might fill out a self-assessment with the same ‘tick boxes’ might have very different needs in reality – no RAS can account for that. One person might under-score because they are embarrassed by the process and don’t want to admit to being incontinent on an initial visit from a social worker because they haven’t been able to tell anyone other than their GP – another person might be anxious and think they can manage less well than they can. Sometimes and this is what local authorities and health services seem to find hard to account for, you just have to treat people and their needs as individuals rather than the subject of outcome measures, tick box performance indicators or resource allocation systems.

Shouldn’t personalisation be about putting the user at the heart of the system? Every user should have a copy of the RAS and how the figure was determined. Which questions are weighted and which aren’t. Without that, there flow of money and the control rests solely with the local authority.

I’m fully against ‘traditional’ care packages. Having someone anonymous and constantly changing pop in for a 30 min welfare check once a day isn’t about improving the quality, control and choice in someone’s life, it’s about a local authority doing the absolute bare minimum that they can get away with to fulfil their statutory duties of care.

The lack of openness about the ways that the RAS shows the true colours of the reasons for these pushes towards the Eden of ‘Personalisation’.

While I have no doubt that for some people, as I keep saying, those with advocates, family or who are able to voice their own needs clearly, have and will continue to benefit enormously from having direct payments – it’s worth remembering that direct payments have been available and accessible for many years now.

Forcing everyone onto personal budgets has only discriminated against those with carers by reducing the amounts of money they are entitled to through the RAS (that’s my own experience of how our local RAS works) and has discriminated against those who lack capacity by promising all sorts of ‘creative’ ways of exploring third party management of support plans but without providing any real ways of accessing it (this is my current bugbear as I have been requesting assistance with this for months for service users I work with but have been told it is not possible for older adults yet as only those with learning disabilities have budgets large enough to make it cost effective – thereby clearing discriminating on the basis of age and type of disability).

I have changed from a fervent advocate of a system which was supposed to be so much better for everyone to a bitter opponent of a system which favours some kinds of disabilities over others, some kinds of service users over others, some kinds of carers (those who are willing to put a lot more time in to manage and support plan where necessary) than others and all to provide fewer services under the guise of choice.

No wonder Burstow is pushing everyone towards direct payments. He is pushing everyone towards a system which masks the way that payments are determined and discriminates openly against people who lack capacity or who have the ‘wrong’ kind of disability or family support.

Now we know that the local authorities can hide the way they make financial calculations, it becomes much more obvious to see behind the facade of the ‘Wonderful Wizard of Oz’ who promotes choice as the final goal to achieve at all costs.

I feel tricked and betrayed by the implementation of the personalisation agenda and the lack of any of the services around it to tackle directly with the problems at it’s heart.

I was deeply disappointed, for example, that the Mental Health Foundation’s ‘research’ and work with people specifically with dementia only focussed on people who either had capacity or had family.  Their advice talks lovingly of setting up trust funds, appointing brokers – well, that is a fantasy rather than a reality and exists only on paper as a choice. They merely replicated a lot of work which was done when direct payments were rolled out around lack of take up for people with dementia and they hadn’t said anything new (I happened to write my dissertation about the lack of take up of direct payments for older adults so did actually do literature researches at the time..).

Anyway, I’m getting ahead of myself.

For now, I think it’s important that we who see through the cosy policy makers congratulating about a ‘job well done’ speak up and speak up loudly for those for whom the system is a further barrier for true individualised care because these self-same policy-makers see them as ‘too difficult’.

My title explains that the personalisation dream is dying but it isn’t dead yet. To be brought back to life, all those involved need to embrace the principles of honesty and openness and not blind themselves to their successes if they can’t see the continuing barriers.

Resource Allocation Systems

Community Care has an article about a case which refers to the RAS (resource allocation system) used to determine the levels of  personal budgets in social care.

Perhaps I should step back a little and explain briefly about the RAS. There is a lot of jargon in the world of personal budgets – little of it is genuinely helpful.

An assessment (usually a self-assessment but sometimes carried out with an advocate or social worker) will be placed through a spreadsheet chart analysis and depending on the data fed in, the RAS (as it is known) will spit out an ‘indicative budget’.

Now this is where the court case comes in – R (Savva) v Kensington & Chelsea LBC

As is explained in the Community Care article, the case involved a 70 year old woman with a number of long-standing health conditions. She completed a self-assessment and under the ‘RAS’ system was granted an indicative budget of £82 per week. Being indicative meant it didn’t necessarily align with the ‘true costs’ of services so she was given a budget of £170.

Fast-forward to a hospital admission and a deterioration in her physical health which meant an increase in her needs. Self-assessment completed again – this time the RAS indicated higher needs and a higher indicative budget but the actual budget, the £170 allowed, remained the same.

The judge ruled that the RAS was not unlawful as it had been cross-checked by a human however the local authority should have shown greater transparency and explained the reasons better to the woman as to how the decisions were made.

For me, this is something I could see happening where I work. The RAS is known to be a very poor and ineffective tool.

Just last week, I was explaining to a colleague about it and he was becoming increasingly agitated as I explained again and again – the RAS just doesn’t work – don’t rely on it, just discuss what the needs are and his (very good) point being ‘if it doesn’t work, why do we us it at all?’.

Perhaps it is an indication of our need to find ‘systems’ and computers to compute things that actually can’t be computed. My understanding is that the reason for the RAS is to somehow try to equate and quantify different needs on an equitable basis. The RAS was determined by various people working in policy-making ivory towers who are absolutely convinced that there must be automated ways to do everything. Look, it will save time………. hahaha

Someone needs help with making breakfast – assign one figure for that.

Someone needs to have some daytime activities – assign one figure for that.

But reality suggests that the cost of an hour of ‘daytime activity’ will not equate to an hour of ‘meal preparation’.

Of course, this will make no sense to someone coming in from the outside – they see the figure and run with it – truthfully, it makes little sense to someone on the inside either.

So on the basis of the local government looking at ways to save money on administrative tasks – perhaps eliminating a practically useless attempt to automate clients’ needs according to financial figures would be one of them – as the work needs to be replicated manually in any case.

The only fortunate thing is that it takes a couple of minutes to run an assessment through a RAS – the unfortunate thing is that it is a completely soul-destroying couple of minutes where you know what you are doing has no purpose whatsoever as it all needs to be done again with more human input.

Computers don’t solve everything. Sometimes the systems merely serve to obfuscate.

Perhaps the real danger of the RAS is that it will be used to confuse users as to their needs and what they are entitled to.

Personal Budgets – Some thoughts

I attended some training on Personal Budgets a while ago. It was fairly comprehensive training that was surprisingly well-presented (it isn’t that I don’t always expect good training but sometimes it can be something of a curate’s egg.. ).

It leaves me in the position of being able to now set up pilot Personal Budgets, having a greater awareness of the process. I immediately, during the training, thought of two people whom I felt that this new system could benefit but first to the details.

Individual budgets or personal budgets as they are also known, are a key part of the programme of ‘Personalisation’ of adult care services. It is detailed in the ‘Putting People First’ paper but was first mooted in the 2005 Green Paper, Independence, Wellbeing and Choice. The idea is that the cost of the services will follow the individual and will involve different sets of choices about how that money is spent.

There is no doubt that the moves towards a more fine-tuned way of meeting needs opposed to making resource-led decisions about services that can be provided is a wholly positive outcome.

The idea is that you would start with a Self-Assessment Questionnaire which is completed either independently or with the support of either a care manager or an independent advocate (I am using ‘care manager’ broadly to mean an allocated employee of the local authority/health trust who would usually be setting up the care plan).

This questionnaire is then ‘validated’ by an employee who needs to ensure that the dreaded (in my view anyway) Fair Access to Care Services criteria are met and then a RAS (Resource Allocation System) defines an indicative  budget.

This budget is used to discuss a personal care plan with the service user and the idea is that the budget should not be a ‘cookie cutter’ type care plan but should indicate the person who needs the service within the financial constraints, of course. Care can be provided via a direct payment or the indicative budget can be used to purchase ‘in house’ services and a wide variety of mixtures in between. The people that I am considering taking through the process, as a part of the pilot stage, both really would benefit from more mainstream day time activities rather than going to the provided day centres (which are great, in their way, for people who enjoy them – and many do).

One person wishes to do some computer training and keep in touch with family all over the world as his daughter is on the verge of emigrating to Australia and he already has family there. One of the examples given to us during our training referred specifically of someone who wanted a computer and internet access to ‘keep up’’ with the times and I think there is a good case that this would provide this particular man with a much richer life if it were to be provided.

The other person is a woman whose husband is providing substantial care for her. She is subject to very low moods but has expressed an interest in pottery and she is very experienced and skilled in various art mediums. Although the day centres offer art activities, she wants to be challenged and we are looking at a lot of courses across London – however this has financial implications. I am hoping that we can use individual budgets in these contexts.

So we can see how wonderful they could be – however, my fear remains the quantity of paperwork they have generated around them. There is no question that the idea is positive and would provide better services but they are, at present, very far from simple and straightforward. My hope, in my ever-positive light, is that the pilot scheme will iron out and streamline the process – my fear is that in the system that is local government bureaucracy, paper is seen as a good thing and forms as positively exciting! Even in these days of ‘paperless’ offices.

Our trainer assured us that we wouldn’t find the process too draining on our time and days of increasingly caseloads as the people who were able to complete their self-assessments independently, would balance out those who needed a lot of support – however, I think she was gearing that comment towards those who work in general adult teams. My main worry about the new system is that it will be very difficult to plan the time to put together these budgets, although in the back of my head, I am remaining positive overall.

Like Direct Payments the focus seems to be on younger adults with disabilities, those who are able to advocate well for themselves and adults with learning disabilities. My thoughts on returning from the training was that little thought and time seems to have been spent on the consideration of people who may lack capacity in some areas to make judgements about some of the choices that are expected in this process.

I hope very much I am being overly cynical and am proved wrong. Today, David Brindle in the Guardian writes about RAS and its more helpful nature towards informal carers, whose contributions are recognised.   He makes some excellent points and it restores some of that positivity about the process.

I have some niggling doubts in my mind though – perhaps it is reminiscent of the introduction of the 1990 NHS and Community Care Act – when we were promised that ‘Care Management’ would be needs-led rather than resource-led, however, the fact is that those needs became more and more narrowly banded into large block contracts involving very little choice or flexibility.

Plus ca change..

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