Personalisation in Practice

(Note – I wrote this for something else where it was not used but thought, I’ve put the work in and might as well see if anyone else finds it useful/interesting! That’s why it’s a slightly different style from my usual rants and definitely drier#.. and why there’s a bibliography!)

Personalisation policy and the principles of developing person-centred care have promised a great deal in terms of increased choice and control for service users, and a change in focus towards greater user participation in services. While putting people at the heart of services is fundamental to a progressive and ethical social care culture, the gap between practice and policy in relation to the personalisation agenda can look like an insurmountable chasm to the practitioner. This is an area where promises have bounded ahead of practice experience.

What is personalisation?

Personalisation is a process which puts people who use services at the heart of decision-making about what is right for them and how their care and support needs will be met. The opaque jargon of social care can be a barrier to communicating key concepts, and defining ‘personalisation’ is crucial as the term is used in different ways and attracts meanings which can depend on the agenda of the speaker. Sometimes personalisation can be used as a synonym for person-centred practice and support. Gardner (2011) explains that ‘personalisation’ incorporates “different strands of ideology, theory, policy and practice”(p2). Not all definitions are inclusive of the groups of people who may lack capacity to make decisions for themselves about their care needs so it is easy to see how the rhetoric can overtake the reality.

The ‘personalisation’ agenda as it has been known is more than moving people to ‘personal budgets’ and the roll out of direct payments as a default mechanism for delivering social care. It is about moving the paradigm of ‘power’ away from the centre and towards the individual. The development of this personalisation agenda took place in the context of a great deal of excitement and promise. In the early stages where the Independent Living Fund (ILF) was created in 1988, allowing for the first time people who used services to directly commission and purchase their own services. This continued through the various configurations of direct payments (initially introduced through the Community Care (Direct Payments) 1996 Act) as they made their way through different user groups and the scope extended, leading to Putting People First (2007) which pushed through the ‘transformation agenda’ in adult social care to move towards personalisation for all.

It is important that we don’t confuse ‘personalisation’ with ‘direct payments’ nor ‘personal budgets’. Different models of providing people with more choice and autonomy over decisions which are made regarding their care can be done in many different ways and in some ways, the handing out of money and telling people to get on with it – with or without the requisite support – is a very narrow attitude to take in terms of allowing choice. Choice has to include a choice in the way that we can choose about what we receive, but there has been a political emphasis on direct payments as the gold standard of choice and that leaves some at a much greater disadvantage than others in terms of having control over their own support packages. The jargon and language attached to the change in adult social care creates a layer of professional knowledge so that in itself, it removes elements of knowledge and control from people who use services.

Gardner (2011) states that “Personalisation reinforces the idea that the individual is best placed to know what they need and how these needs can be best met. It assumes that people can be responsible and make their own decisions but people need information and support to do so” (p34).

Personalisation is about far more than ‘cash in pocket’. The system embraces models for establishing different routes to choose but in practice some of these are scarcely developed. For example, using individual service funds to buy support for older adults and people with mental health needs. This focus on the individual being at the heart of the process of choosing and having more control over the care that they are provided with and establishing a framework for person-centred practice lies at the heart of the ‘personalisation’ agenda. However, the path towards a goal that it is impossible not to support wholeheartedly has become muddied with the realities of spending cuts, local authority processes and challenges which have been continually ignored rather than addressed.

The policy has been driven by the wish to overpromise in terms of extending personal budgets (and hence the ‘personalisation’ agenda) to all within specific time frames where the reality has not been able to keep up. So we have seen the reinterpretation of ‘personalisation’ to represent care and support packages that in reality look no different at all to those which were delivered 5 or 10 years ago but with a different layer of language and bureaucracy layered on top of them. This creates further disillusion within the profession, especially as the social work profession is committed to increasing person-centred practice and empowerment of individuals in the face of the ‘system’ which can sometimes be oppressive and dictatorial.

The implementation challenges for the personalisation agenda have been extensive. While this is to be expected in any process involving widespread changes behind both the philosophy of a system and the systems themselves, the agenda of promoting user involvement, choice and co-production has moved at different rates for different user groups. For example, while the roots of the personalisation agenda lie in the Independent Living Fund and the processes built on driving forward choice and control for adults with physical disabilities and learning disabilities, SCIE report 40 (Newbronner et al , 2011) explains that “There is a risk that people in later life are being squeezed into a ‘one size fits all’ model of personalisation designed with and for younger people with physical and/or learning disabilities”.

Practitioners on the ground who are often the key to success of failure of these policies in practice perceive that there is little interest in addressing their experiences or hearing their feedback.

Why personalisation?

Personalisation is an important policy aim and it is important that it works. The idea of self-directed support (or personalisation) has been a process and direction through which policy has been travelling for decades. It touches on the fundamental aims of what social work is about and how it is used in practice. There have been many changes in the way adult social work has operated since the NHS and Community Care Act (1990) was rolled out and particularly as ‘social work’ developed into ‘care management’ through this period. So why was ‘personalisation’ needed? As local authorities disavowed themselves of delivering services directly, the logical step, as purchasers of services would be to ask people who used those services to have a greater input and role in making decisions about which services were commissioned. That, at the heart of it, is personalisation. One of the main criticisms within the care management model of services and care plans being written by social workers with services being defined by block contracts was that there was that this was very much a ‘one size fits all’ attitude which left people with little choice apart from accepting or declining the services which were on offer (Maclean, 2011).

The policy move to change this and to shift the ‘power’ from the provider to the user has been wholly positive. There is no professional expertise in deciding what meets the needs of individuals that cannot be trumped by the individual deciding for themselves. For this policy to move into practice, there have been accompanying bureaucratic and process-driven changes, such as the introduction of self-assessment processes and attempts at rationalising resources with some transparency (with mixed effects) around the amounts of money spent on care so that people can make their decisions about the services which best suit them. While the direct payment model is the most touted, there are also routes through local authority managed budgets and individual service funds (ISFs) where budgets are shifted to service providers to deliver as required by the service users.

How is personalisation?

The barriers to extending personalisation have been addressed in numerous research literature. There is much evidence which seems to repeat the same conclusions that the progress of different models of delivering care, because ‘personalisation’ is about more than direct payments. This leads to frustration among practitioners that the current barriers are exactly the same barriers which were identified to the same groups of people as those to direct payments five years ago with little progress in some areas.

SCIE carried out research (Newbronner et al , 2011) focusing on people with mental health needs and older people which were the groups of people where the take up of personal budgets has been slower to gain traction. They looked at the different ways that personal budgets were offered: namely those which were directly commissioned and managed by the local authority, third party managed accounts, direct payments or a mixture of these things. They found that there was a risk that inherent processes to assess and allocate resources such as the RAS (resource allocation system) and the assessment process which may be initially a self-assessment or a facilitated process of assessment depending on the local authority and the individuals’ needs, needed to be tailored more finely towards the relevant user group.

“Where a generic system [for RAS] was used it highlighted inequalities for resource allocation between client groups. Older people, especially those with high care needs, appeared to be the most disadvantaged.” (Newbronner et al , 2011) p9

This lack of equitable access through the ‘front-door’ leads to increased disillusionment with a process which is supposedly designed to be enabling and supportive.

Another barrier is that of attitude of social worker and organisation, which is mentioned in an Age UK report “Personalisation in practice” written in 2011.

“There was a concern among support providers and some LA/Trust staff that many PB (personal budget) holders, especially older ones, were being steered away from direct payments and towards managed accounts or services by the LA (local authority” p9.

This indicates that some of the ‘blockage’ on progress and implementation is within the systems which are meant to promote it.

The intransigence of social workers and the lack of desire to embrace new models of service provision which move the locus of ‘control’ away from the professional and towards the person who uses the service has often been argued as a reason for the poor take up of direct payments first ( (Littlechild, 2002) where they say, in relation to direct payments, the forebear of the current personal budgets “it is not disabled people making informed decisions to reject the idea of a direct payments package, but their social workers effectively depriving them of access to direct payments by failing to provide information and support” (p138). This is a harsh judgement to put at the feet of practitioners but it is one that is popular among policy drivers as it is easier to blame the attitudes of practitioners than to evolve methods to promote and simplify the methods of delivery of the personalisation agenda.

Unfortunately the ‘blame’ agenda took hold early in the development of policy making and has led to greater alienation of practitioners who do want to try and make things work. There is a sense of being blamed for not embracing personalisation when the system is flawed, not because they are negative but because the processes are inexorable and have been built to reflect the needs of particular service user groups whose needs, priorities, and abilities are not universal. Effectively, policies are designed to fit some service user groups at the expense of others. Glasby (2012) states “one danger [of the roll out of personalisation] may be that current policy rhetoric is so strong that it is difficult for people with legitimate concerns and questions to raise these in an open and safe environment. Speaking to front line practitioners, some feel as if expressing doubts can be seen as ‘heresy’ and they are reluctant to say what they are thinking. While this may not have been the intention of policy makers, it could be a significant barrier in change if people feel concerned about a policy but don’t feel comfortable exploring this further, and simply disagree in silence.” (p8)

In some of the legitimate concerns, (Newbronner et al , 2011) explains that there is an inherent biases present. Referring to resource allocation schemes (RAS) the study found that “Where a generic system was used it highlighted inequalities in resource allocation between client groups. Older people, especially those with high care needs, appeared to be the most disadvantaged.” (p6)

There are therefore, many legitimate concerns which have been evidenced through research into ways that personal budgets have been used with different user groups has shown. It is vital that the cautions voiced by less enthusiastic practitioners and service users are embraced by those who are guiding policy, rather than being written off as being ‘negative’ without having the chance for their voices to be heard and for lessons to be learnt as a result.

Another challenge that is faced in practice is one of time. Quality support planning needs the investment of time. In the ideal world, presented by those who ‘run with’ the agenda, everyone is able to take an active part in making decisions for themselves and choosing their own care to meet their needs, as defined by themselves. The reality is that some groups have not been able to engage in the process of taking an active role in their own support planning; they are effectively excluded. This may be because they lack the capacity to manage a direct payment or organise a personal budget themselves, or because they lack support systems around them, such as family to help them do this.

SCIE report 40 (Newbronner et al , 2011) emphasises the fact that older people are more likely to need care during a crisis. People undergoing a crisis are likely to be less able, at least initially, to engage in the process of planning and organising their own care. Intermediate care teams typically assess and set up a temporary interim care plan and budget. Support planning then takes place a second time once the person is in a more stable situation and able to take stock. The time taken to set up a more personalised care plan in terms of the administration hoops to jump through are a significant barrier to some people and some ways of providing support.

Where does Personalisation go?

The ideology behind personalisation is sound and needs to be embraced wholeheartedly.

As practitioners we want work to support, involve and include people who use our services. The future must involve a stronger focus on services and delivery of services in conjunction with people who use them, but in order to get there, we need there to be a realistic, no-blame space for discussion between those who make policy and those who implement policy, as well as those who use services who lie at the centre of the social care system. There is still a disparity in terms of those who are best served by current practice. People who have benefited most from personalisation are those with the best advocacy and loudest voices. For the policy to embed itself in practice, it needs to offer the same quality and opportunity for flexibility to all user groups including those who are not able to raise their voices and who don’t have family advocates to speak for them. That’s where the role of the social worker has scope to be established to a much greater extent. As practitioners on the ground they have some of the most acute understanding of the challenges faced by people they work with, particularly people who are not able to best articulate their own concerns. If personalisation is going to work for everyone, we need to hear the voices from practice.

 

Biblography

Age UK. (2011). Personalisation in practice : lessons from experience. London: Age UK.

Netten et al (2012). Personalisation through Individual Budgets : Does it work and for Whom? . British Journal of Social Work , 1556-1573.

Gardner, A. (2011). Personalisation in Social Work . London : Sage.

Glasby, J. (2012). The controversies of choice and control – why some people might be hostile to English Social Care Reforms . British Journal of Social Work 1-15

Littlechild, J. G. (2002). Social Work and Direct Payments. Bristol : Policy Press.

Maclean, S. (2011). Personalisation and Person-Centred Care. London : City and Guilds.

Newbronner et al . (2011). SCIE report 40 : Keeping Personal Budgets personal : learning from the experiences of older people, people with mental health problems and their carers. London: SCIE .

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.

Panels

Since I’ve been employed as a social worker one of the constants in my working week has been the presence and existence of ‘panels’ in many different forms. There was a brief stage when we were told not to refer to them as ‘panels’ but rather meetings but it’s all the same thing at least, in the setting in which I’ve been working. They are groups of managers and professionals of a variety of provenances making funding decisions on behalf of the local authority or health service.  Of course sometimes they say it is about joint decision making (which is why the word ‘panel’ is frowned upon now) but that’s really a facade. I make recommendations but I have little authority over funding decisions.

Different local authorities often have different mechanisms so my explanations of the panels that I might attend come with the proviso that things are arranged and organised in a variety of ways.

We have panels which primarily make decisions about packages of care that exceed a particular baseline cost. That baseline has changed a variety of times but generally managers in each team are given a certain ‘threshold’ to which they can approve funding requests but above that and any application for funding for residential or nursing respite or long term care have to navigate a ‘panel’.

We have separate panels for high cost personal budget packages which would be provided for care at home and those which approve residential and nursing care/respite and continuing health care (which authorise applications for long term payment for care by the NHS )

Going to panel generally involves the transfer of reams of paperwork. I’d probably say it’s the most obvious way though that I provide the function of advocating for a particular service user or family member when I ‘present’ the situation to those who make the ultimate funding decisions.

Contrary to what some people might think, I have absolutely no vested interest in the local authority or NHS ‘saving’ money by not agreeing to a particular package – indeed, I won’t tend to bring something to the panel if I don’t wholeheartedly agree with it myself. I am a great advocate of money being spent where it is needed.  I have a general wish to see public money well-spent of course and I understand the need to ration resources but if I bring something to the panel and authorise an assessment, it is because I believe that that is what is needed according to my professional  judgement and as far as that’s concerned, balancing the rest of the local authority’s budget is not an issue I consider (which is obviously why these panels exist!).

Similarly with the Continuing Health Care Panels  I cannot conceive of a situation where I would bring someone to that panel if I didn’t absolutely want and believe that they should get that funding.  If I attend and collate a report it is because I and the multi-disciplinary team behind the report, believe in it.  I absolutely want people to get what they are entitled to and have no ‘secret instructions’ to try and deny the funding. The rules though are not altogether clear but it suits the funding parties and the governments to keep the rules complicated and unclear. There’s a lot of money at stake.

The panels are open to service users and carers but for me, personally, it’s very rare that service users or carers attend with me.

I have more often  had family members attend Continuing Health Care Panels with me and found it is a much better way of working as it allows a lot more transparency and removes one of those bars between me trying to put the words of others in my mouth.

By now, I know the people who sit on the panels and they know me. That’s a massive advantage in being able to persuade and cajole. It makes me realise how useful it is to have built up links and a reputation among the more senior management. I like to think that a trust develops.

Panels used to scare me because I’d be questioned, often in detail about the proposals that would have a substantial monetary implication for the local authority. My paperwork and assessments are examined in great detail and a level of scrutiny applied. Now that I’m more confident, I tend to take pride in presenting my reports and welcome the questioning as I know what to prepare, what to highlight and what to expect.

I’ve had panels where paperwork alone is assessed and where we are not required to attend in person.  I prefer being there ‘in person’ especially when there are any question marks that I feel I can clarify.

One of my favourite tasks in my work is feeling that I am genuinely able to advocate and navigate a person or family through the muddy mired waters of local authority funding streams and decisions. I wouldn’t say I enjoy the panel process although there is a satisfaction in having something approved especially if it is something you feel might be hanging in the balance, but I don’t dread them as much as I used to.

As for now though, it’s just another part of the process of seeing a paper ‘plan’ through to fruition.  I know they work differently in different areas – indeed, I’ve seen them in different forms in the local authorities I’d work for – but that’s how they work – whether they are called meetings or panels, the effect is the same.

And that’s the explanation of what the panels are – the other side of each discussion I have and each decision that is made by the faceless ‘management’ that I sit in front are that they are desperately important decisions to each person who is reliant on the authorisation of that funding to allow them to life their lives more fully, to allow their family to have access to respite services. My job as I see it, is to bring the paperwork and paper assessments ‘to life’. I am not only writing about a person on a pro forma, but I’m able to flesh out the requested questions and documents with a person, with a family, with relationships.

That’s why I don’t mind attending  these panels as much as  I used to. I’m not frightened of them anymore. I see them as an opportunity to take a crucially important role in someone’s life and to speak for them and not  just about them.

Technology, Social Media and Social Services – Finding new ways to ‘help’

iPad con dock y teclado inalámbrico

Image via Wikipedia

I have some across lots of discussions and debates about ways of using social media and new technologies and interactions to ‘help’ social services become more effective. Most of it seems to revolve around building online directories and databases of micro providers and services that are available which build on so-called community capacity to improve the way that personal budgets can or might work.

At the risk of sounding overly cynical there is nothing ‘innovative’ in my mind about building a directory of services.  To me, this is not a particularly innovative way to use ‘technology’ in social services.  It taking a very obvious and well-trodden route to using new technologies. Providing directories while being useful to a certain group of people again exacerbates the isolation of those who are not party to or able to use them.  Being innovative isn’t always necessary to be helpful but it is very important that new ideas are focussed so we don’t just end up with increasingly specialised, localised directories that might have more ‘interactive’ features and feedback, look more ‘user led’ and compatible with the buzz words of social media but in the end they are brushing the surface of possibilities.

It feels more and more as if that there is a growing division between the ‘haves’ and ‘have nots’ as far as personal budgets have been extended and does absolutely nothing to address or use technologies to address those who reside continually in the ‘have not’ section.

While at work, we labour with database systems that have clearly been developed through conversations between commissioners and software companies without any recourse to frontline practitioners, nice new provider directories are being tinkered around with while the fundamental foundations of the systems we work with remain resolutely inaccessible.

I’ve had a few ideas myself and whilst I lack the technological expertise to see any of these ideas to fruition, this is a kind of ‘wish list’ of the sorts of things I’d like to see.  I’m under no illusion that these are ‘new’ ideas. I am sure similar things already exist in some form but they are things I’d like to see pan out in the longer run. Things I’d like to use at work.

I’d like to see more creativity in the use of technologies to assist with decision making for adults who have some kind of cognitive deficit. I’m a great fan of the ‘tablet’ and ‘touch screen’ model as I think it is intuitively an easier interface to understand.  When I see people instinctively reach out to touch the screen of my Kindle (which isn’t touchscreen!) I realise that we are becoming conditioned to seek the easiest input methods which are about touching a screen and speaking into a microphone and perhaps writing on a tablet. Now, voice recognition has improved, I’m yet to come across very successful handwriting recognition (possibly because I have scrawly almost illegible handwriting) but there is potential there. In the meantime, pictures and touchscreens seem like a good way to go.

Using pictures/sounds/music it can draw on multi-media ‘shows’ and explanations of different options – moving beyond the ‘written word’. Providing documentation in aural form or in pictorial/moving form rather than reams of leaflets. Having recordings of familiar voices or pictures of familiar faces might help to reassure. I’m a great fan of telecare in general with the proviso of always being mindful that the human contact is not replaced but in days where human contact is sparsely provisioned anyway, it may be something that can be experimented with.

Why not a YouTube type video to explain how services can be chosen instead of reams of ‘easy read’ leaflets which really aren’t remotely ‘easy read’. Instead of flooding people with lists of providers (which, while good for some ignores those who are restricted in terms of capacity and carers to choose ‘freely’ the types of services they garner) why not explain and expound in different ways the ways that services can work?

Why not explain providers in terms of what they can actually provide and what purpose they serve rather than creating directories that are meant for people with a good understanding of what they want and need?

I was in a day centre last week and there was a seemingly unused Wii. I wonder if he Kinect might be a better project to develop some type of interactive play, exercise and work as it doesn’t need a controller at all and uses the more innovative way of body movement.  Using participatory games with larger screens in company can provide different stimuli. I know why games developers  haven’t tackled directly the ‘older’ market with games that might otherwise reside in memories but why not repackage old school yard games and board games with Kinects and iPads? It may be a good way to introduce the use of these new technologies in a ‘friendly’ manner which may then see them used in other wider ways – such as directories or personalised information sources. Using YouTube video channels for personally designed ‘reminiscence’ therapies could personalise the delivery of memories and digitise memory boxes where items are not there to build up the frames of someone’s life and people aren’t there to fill in the gaps.

There are many ‘dating site’ type services that match people and organisations. Volunteers to voluntary groups etc. How about a type of match between schools and residential homes? I know it’s something that’s sometimes done locally where I work and having spoken to both providers and some of the kids who go in, they seem to enjoy it and it can change and break expectations – each of the other.  I

We talk of social media a lot and often it is used to provide ‘recommendations’ to particular services through these databases. Perhaps more user and carer led general recommendations can be collated. Crowd source an ‘introduction’ to social services provisions by those currently using the service.

Ask ‘what do you wish you’d known?’ ‘what do you wish someone had told you?’ and while taking out all the obviously libellous stuff, a local authority must be brave enough to leave in the criticisms. We learn through complains and criticisms and it can take a lot of guts (or anger) to make a complaint or to criticism and that MUST be respected by the service and the individuals at fault and used as a means of improvement.

I don’t want to see local authorities ‘whitewash’ problems in order to gain sparkling OFSTED or CQC inspections. It sullies the whole process and makes the inspections worthless. Regulation should be less authoritarian and more about actually making improvements and making things better for the end user – not about allowing local authorities to produce the ‘right’ results while poor practice is brushed away from the sight of the inspectors.

But back to my point about using social media to crowdsource – it is important that social media ALONE is not used as an ‘answer’. Crowd sourcing must be honest but it must also be broader than putting out an ‘internet consultation’ and having a Twitter account or blog. There must be pounding of the streets too to engage those who are not able to use digital means to put their points across. There should be knocking at doors and face to face discussions – not leaflets, not inaccessible (for some) groups.

Talking about crowdsourcing though, there’s a much better and perhaps more obvious way it can be used and certainly isn’t being used at the moment and that’s to engage other social workers and professionals into putting together more information and useful methods of practice for ourselves. Sure, it needs time but we remain reliant on organisations to provide ‘guidance’ such as SCIE (who do provide fantastic resources) and BASW and the College of Social Work but why none of these organisations who purport to exist to help social work and social care practice actually engage more directly and use social media and open access blogs/discussion groups/forums/micro blogging etc to engage with currently practicing social workers is completely beyond me.

I’ve become very interested in open access education and resources and feel there is great scope for professional engagement and information to build its own resources and information together with users and carers, together with other professionals but there has to be a push for social workers to see the benefit of sharing and finding appropriate ways to share the information that we learn every day.

I have other ideas which will come in different posts  but I’d be interested in hearing other peoples’ ideas for uses of ‘technology’ in the very broadest sense and how they can develop to help the broadest range of people we see in social services – particularly those who are less able to look information up in various fancy online directories.

Personal Budgets, Personalisation, Thoughts and Hopes

Yesterday Think Local Act Personal (TLAP) published the results of a National Personal Budget Survey.

The headline ‘results’ are of course overwhelmingly positive. Personal Budgets work. Direct Payments Are Good. Everyone is happy.
Questionnaire

jrambow@flickr

Is any of this a surprise though? We know that people who can and are able to manage (or have family members to help them to manage) personal budgets delivered through direct payments (where money is paid directly to users) prefer them to less flexible local authority provided care packages – particularly when the scope of local authority care packages is limited to agencies with block contract arrangements.

In Control – which publishes the survey – highlights the following ‘implications’ from the findings. The bold is a direct quote and the italics are mine.

Other implications that can be drawn from the survey results include:

  • Personal budgets work better for older people than you might expect and direct payments work just as well for older people as everyone else.

Who said we were not expecting personal budgets to work for older people? Does this make an ageist assumption and lump together all ‘older people’. Of COURSE they work as well for people who are 65 as they do for people who are 64 but what about people without capacity or who don’t have family or friends involved? What about a more subtle distinction between 65 year olds and 85 year olds rather than a blanket ‘old people’ response.

  • The processes used for delivering personal budgets are more difficult than they need to be and that impacts badly on carers and on personal budget recipients.

Did this seriously need a survey over three months to discover? You could have asked me three years ago and I wouldn’t have charged consultancy fees.

  • More work needs to be done to make direct payments more accessible generally but especially to older people.

This could have been written 6 years ago. We KNEW this from the roll-out of direct payments initially so why was NO WORK WHATSOEVER done around trying to work with more difficult to reach groups when personal budgets were being ‘piloted’. I really can say ‘I told you so’ as I begged our Personal Budgets roll-out team to allow us to pilot or be involved in the initial processes and they said our user group was ‘too complicated’. Heh.

  • There is a need to simplify and clarify the rules and regulations surrounding personal budgets.

So those are the ‘implications’ and forgive me my cynicism. I love the idea of personalisation. I want it to work. I want to work in more creative ways or outsource my work if necessary to other third sector organisations but this is not ‘different’. This is not ‘new’. I fail to see the value of reports and surveys that tell us exactly what we already know again, and again and again instead of actively trying to work with people who actually understand and know what is happening ‘at the sharp end’ to try and work out ways to improve outcomes for those who are not receiving direct payments currently.

So back to the report – which used a Personal Budget Outcomes Evaluation Tool (POET)

in total, 1,114 personal budget holders  completed the POET survey, including 832 returns from the 10 local authority demonstrator sites and returns from at least 76 other local authorities. 417 of these personal budget holders also wrote in a comment about their experience of personal budgets.
In total, 950 carers completed the POET survey,including 782 returns from carers in the 10 local authority demonstrator sites and returns from at least 66 other local authorities. 434 of these carers also wrote in a comment about the impact of personal budgets on their own lives

And

Almost half of people responding to the survey were aged 65 years or more (43%); the social care needs of working age adults (aged 16-64 years) were largely split between learning disabilities (17%), mental health needs (8%) and physical disabilities (25%).

I don’t want to play too many games with statistics but it would be interesting to know what proportion of people who meet the FACS criteria in total are over 65 and whether 43% is a proportionate figure in relation to total recipients of social care services. I think as well, to class ‘older adults’ as ‘over 65s’ is a little disingenuous although I know it is done because that is the basis on which statistics are given but it shows some of the ways that systems restrict and inhibit knowledge. It would be far more interesting to know the differences of take up of personal budgets between 65 year olds as opposed to 85 year olds for example.

And to some of the headline figures, that can catch the press attention – most people who receive personal budgets find there is a ‘positive effect’.

Looking through some of the figures, it seems that older people were much more likely to be receiving council managed budgets – you know, that ‘easy’ way of just switching around a bit of paperwork and making it look like there is now more ‘choice’ when in fact, the services and delivery is almost exactly as it was before the ‘change’.

As for the outcomes the report says

In terms of social care need groups, older adults tend to report less positive outcomes than other social care need groups in six out
of the 14 outcome domains

I find the report to be honest, a bit of a whitewash in itself. It is only accentuating the positives and like all discourse related to personalisation and personal budgets, seems to be going over all the same ground again and again.

People like choice, people like flexibility. Yes, and rabbits like to eat carrots. It doesn’t need a survey to tell me that. What action and money and research needs to be concentrated on is the HOW.

HOW is there going to be an improvement in service delivery to those who are marginalised in this process.

HOW are we going to wriggle out of the sham that is council-managed budgets while allowing those who need to have others to manage their budget and support their care to have the same access to quality care and personal assistants that those who are able to choose and decide have.

I’m rapidly coming round to the view that personal budget support planning needs to be moved out of the hands of local authorities who currently have no interest in the process except for meeting the government targets. Where is the innovation within local government for change? Sure there are people, and I hope to be able to count myself among them, who want to do a better job and provide a better service but the constraints of the type of job I am doing means that I can’t devote the time necessary to truly inclusive and supportive care planning so Mr G whose support plan I am writing up (he doesn’t want to be involved in the process as he ‘doesn’t like forms’ and can generally only tolerate conversations with people for between 5-10 mins maximum and that’s only if he’s known you for at least a year) does get a rushed service because I have to carry out Best Interests Assessments, do Mental Health Act Assessments,  complete reviews and CPAs, liaise with other professionals, arrange discharges from hospital for other people. Yes, it’s a little bit of wallowing in self-pity and I wholly accept that. We are all busy but local authorities have no idea if they want a quality support plan without changing the ways of working in any other respect. Where is the time to devote to Mr G’s creative support plan? Oh, well, we’ll just do a regular care plan and a managed budget. Should it be that way? How has the march towards personalisation helped people like Mr G? Mr G wouldn’t complete a survey about a personal budget even if he did get a letter. Letters worry him and he doesn’t have a phone. I don’t want the Mr G’s that I work with to be forgotten in the rush towards direct payments.

When I first attended training we were told that any additional time we might be spending in our day to day work on these awful process-driven systems would be made up by the amount of time we would save by people completing their own support plans and assessments without any assistance. That may work for some people and I hope it does but for most of the people in the team in which I work it is unfeasible due to the amount of people I work with who have high support needs and who don’t have the capacity to make decisions about their own care needs.

The survey angered me, in a way that is probably irrational. Partly because it seemed to have taught us nothing at all. And partly because again, I see no new thoughts and ideas about developing systems that will be truly inclusive.

HOW can social care improve for everyone. That’s everyone. Even those who don’t want direct payments. Even those who don’t have advocates. Even those who are self-funding their own care packages as the criteria for receiving government support rise higher.

Those are the questions I want Think Local Act Personal to answer.

I have my own ideas. I think there will be a movement to roles for professional ‘support plan advisors’ who aren’t necessarily based in the local authority – perhaps individual social work consultancies but there has to be a separation between planning and delivery and the cost of these services shouldn’t need to be met out of the personal budget itself.

First and above all, there has to be a consistency and a transparency in the way resources are allocated and if necessary a weighting towards people who need assistance to access the same kinds of services who have been excluded from the process and the benefits in the past.

A survey of the skills-base of professionals who do implement support plans needs to be undertaken to establish what is needed and what is important to have.

Maybe it is a professional type qualification or maybe not. There is not much discussion about what the role of the social worker should be in the process. Should we be the ones support planning? I think there’s a argument that a social worker is well-placed to look at building plans together in conjunction with a user and family member if necessary and setting up things like trust funds or managed local authority budgets but only if the social worker is removed from the local authority talons.  Maybe some kind of team of people with different kinds of experience and expertise working together with some background and training in non-directive advocacy for people who do lack the capacity to organise their own support plans. Perhaps the social worker or support worker in these new roles could have longer term relationships with the users and carers and wouldn’t feel so pressured by management if freed from the local authority reins.

But who is going to suggest and discuss the new ideas? Where do they go? Who will collate them?

While I see lots of discussions around me about personalisation, I see little that says anything other than it HAS to work because it is best for ‘people’.

I genuinely believe that is has potential to deliver a much better system but and this is a big but, there has to be more creativity and different kind of research that looks at new models and methods of delivery and consults people – yes, like me – who while being critical really really do want things to work better.

My criticism isn’t because I want to bury my head in the sand and ‘retain the reins of control’. I really don’t. I want to relinquish control but I want more than anything an equitable system that doesn’t fob off ‘more difficult’ service users with a second class service.

Human Rights, Home Care, Personal Budgets and Cost Saving

I read on the BBC website among others that there is a report suggesting that care provided in the home by local authorities to older adults may be overlooking human rights issues.

Old man exmouth market

Daniel2005@flickr

An inquiry into this  was initiated by the Equality and Human Rights Commission in November 2010 and will report in December 2011 but some interim findings have already been published.

I think the context in which the inquiry is taking place is crucial in times that Cameron trying to pretend that he invented the personalisation agenda and rebrand it as a version of ‘Big Society’.

The scope then of the Inquiry as to determine where the responsibility of the ‘public authority’ under the Human Rights Act actually lies and I’m going to quote directly from the EHRC (Equality and Human Rights Commission) as I think this is a crucially important point in the progress of personal budgets and home care provision (n.b. the underlining is my own).

The nature of social care is changing rapidly with a greater emphasis on personalised services and choice.  The majority of social care services are already delivered by private sector agencies, either via contract with local authorities or directly with individuals through a mix of public and private funding.

This complex web of transactions is combined with a narrow judicial interpretation of the meaning of ‘public authority’ under the Human Rights Act. This combination has created a confused picture concerning the duties and obligations of the various groups involved in respecting, protecting and promoting human rights.

Further, an increasing number of care transactions are likely to take place at the margins of, or even outside of, regulated care. There is the possibility that these transactions are beyond the present human rights obligations of the State.

We are also seeing the emergence of new on-line care marketing and brokerage services aimed at people purchasing social care with either ‘individual budgets’ or private funds. These marketing and brokering services are currently completely outside of the regulatory system with no means of monitoring the quality of the advice and services they offer. The Government wants to accelerate the pace of reform even further. While personalised care and support has many potential benefits, this is uncharted territory. There are concerns that human rights protection (and other issues) could fall between the gaps.

I’m going to come back, I’m afraid, to my perennial bugbear of people who lack capacity to make choices regarding care provisions and care delivery and wonder again how this group of people without family members, friends or advocates will be able to secure their own well-being in a world where responsibility of the state and the public authority is being discharged to private individuals. Will it become the responsibility of an advocacy service to determine that the support package and the provider of the support package are of a good quality? Or the carer/family member? Hardly the same as a protection under the Human Rights Act.

Food for thought and while I am extremely happy with the forward march of personal budgets and direct payments to those who are able and happy to manage their own budgets, the way that local authority managed budgets provide ‘more of the same’ regarding cheaply bought, block contracted social care remains floating fairly close to the edge regarding what is acceptable and what isn’t.

My fear is that the roll-out of personal budgets has not led to choice for all. It is a false choice and a false impression of the so-called ‘success’ of the roll-out. It has led to great benefits and more choice for some, yes, but I worry that this is actually at the expense of those without the louder voices to shout who have, again, been pushed to the bottom of the pile when quality services are being distributed.

So back to the reports findings so far.

Back to the BBC report

The Commission describes cases of people being left in bed for 17 hours, or more, between care visits and a failure to wash people regularly.

It received reports of people being left in filthy nightwear and bedding after a homecare visit, or without a wash or hair wash for several weeks.

Visits are sometimes so brief, the report says, that people have to choose between having a cooked meal or a wash.

The short visits also mean that staff have to rush tasks like washing and dressing, which frustrates elderly people and care staff

That doesn’t even bat an eyelid with me. This is what I have dealt with for the years I have been working in adult social care. Complaints and apologies about the time we can allocate for specific tasks due to budgets. Apologies on behalf of private agencies who have block contracts that cannot assure any kind of continuity of care.  That’s not even mentioning the  missed visits, the non-payment to staff of travel costs so they are cutting short visits in order to make it to the next ones. This is the reality of social care for older adults in the UK. Not the ‘season tickets to football matches’, not the ‘let me choose nice Mrs Walters’ daughter who I know from church to be my home carer’ kind of idyll that we are presented in the personalisation literature.

The reality for the people I work with and for is increasingly rushed visits and yes, choosing between a cooked meal (but only if it is a microwave meal because there is never ever time to cook a meal more complicated than tinned soup or beans on toast from ‘scratch’) and a shower.

The way to solve this problem and promote dignity is to increase and not reduce budgets for social care in the home. But budgets are being cut and cut hard.

Local authorities use block contacts with private care agencies to save money. The private care agencies generally pay staff at minimum wage. There are some fantastic carers and some fantastic agencies but they are penalised if they don’t offer their services at the very very lowest cost.

As for personal budgets? It is a wonderful reality for some but for most of the people I work with and for, it is a pipe-dream for people with a different kind of disability and with different kinds of support needs from the ones which are mostly promoted in our training programmes and in our policy documents.

If the government truly and genuinely means what it says about increasing and drawing out the personalisation agenda and increasing personal budgets delivered by direct payments there have to be ways clear and research undertaken to help us to create protective and interactive systems for people who are not at the forefront of the march because they don’t realise how much they are being penalised for not having a family member who is able to help with choosing and designing a care package and because they are not able to do this for themselves.

There has to be money spent on developing ways to allow those who at the moment are most at risk of vulnerability to be protected and cared for.

There are so many problems with a society that treats older adults or, in fact, anyone in the way that older people who are in need of care are treated currently. No-one wants to address it because no-one wants to pay. And it will cost.

No-one wants to lose their homes. No-one wants to lose their savings. No-one wants to pay higher taxes. No-one wants to lose weekly bin collections. No-one wants to pay insurance premiums.

The people who hold the reins of power will never be subjected to the humiliations which become a part of daily life for older adults who have need of support that is provided because they’ll be able to buy in their own ‘help’ privately.

Older people in need of assistance are less noisy than younger adults and less emotive than children in poverty and need. Ultimately we shouldn’t ration compassion and there’s no need for a choice to need to be made between one group or another

In the roll out of direct payments and then personalisation and personal budgets, it is the more able younger adults who have led the march and those who have been setting the policy and agenda seem to have completely forgotten the group of older people who don’t have involved family members and who  might not have the capacity to take decisions about care needs for themselves in the rush towards pushing the responsibility for support planning and choice of care routines. They  have forgotten amid the wonderful stories of attending football matches instead of day centres that some peoples’ reality is more about choosing a microwave meal or a shower.

Until those issues are addressed and the protection of the most potentially vulnerable groups of people is managed, the new system will not be equitable and it will not be fair. But perhaps that suits this government that wants shift responsibility from the state to the individual – which is fine to an extent but there are some people who really need that protection.

I look forward to the final report of the EHRC in December.