Category Archives: elderly

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.

Perspectives, Students and Ageing

I enjoy having students around. It helps keep me fresh and enthusiastic and to see my job through the eyes of someone coming into it rather than through the occasionally blurred eyes of someone who has been working for a while.

I had a student shadowing me for a period yesterday. It was a  fairly standard visit as far as my work goes. The person we went to see (who I’ll call Mrs J) was someone I’ve been working with for a few years. While I endeavour to do my best in every aspect of my work, I can’t deny that Mrs J  is someone I have a soft spot for.

I started working with her about three years ago and to say she is isolated is an understatement. For obvious reasons I can’t go into the details but suffice to say since my first encounter with her we have both come a long way. She has had a lengthy compulsory hospital admission during this period and has lived in three different flats (and two different hospitals) in that time. She is now living in a beautiful flat and has a secure tenancy. She is ‘settled’ for the first time in many many years.  She even has a fairly interesting personal budget to pay for a support worker.

I thought it was quite a good visit. We got through a lot of things that needed to be done and things that needed to be discussed.

As we left the student said to me how sad she felt after the visit. She asked me if all the visits I made were that ‘depressing’ and wondered if I worried about ‘getting old’.

It took me by surprise because I thought it had been quite a positive visit and wasn’t feeling remotely ‘depressed’. Then I remembered the perspective I had and the perspective she has. She doesn’t know, apart from the words that I filled her in with, where my ‘starting point’ with Mrs J was. I can explain and expand but it isn’t the same. My ‘starting point’ needs to change and as long as I consider where Mrs J was three years ago, I wonder if I am becoming complacent about the further routes to enrichment and recovery in her life.

It made me think about the way that new eyes can improve the work that I do and shatter some of that selfsame complacency. I shouldn’t look at where I am now necessarily in the context of where we’ve been but rather where we are going.

As for the sadness in my work, I don’t feel it. I feel it some days and in some situations, of course. It’s hard not to and a part of compassion is empathy but I remember a conversation I had a few years ago when I wasn’t long in the job with a colleague who reminded me, while I was expressing my own concerns about age in general, that we only see a small proportion of the population and to constantly remind myself that most people age well. I try to remember that. I wonder if that is one of the reason for prejudice against older people and a lack of respect in the care system.  We just don’t like being reminded of the fact that we will get old. It personalises the work in a way that working in other areas of social work might not. We all hope to grow old. We owe it to those we work with and for to provide the most assistance and to make what can be the unpleasant task of ‘dealing’ with public services as painless and as accessible as possible.

Food for thought.

Goodbye Southern Cross, Hello Open Public Services

So Southern Cross – the largest private care home provider in the UK will be closed.

What of the 31,000 residents who live in their properties? Well, the government has given us its assurance that they will be ok so that’s alright then.

Or not.

Goodbye, Hello

m kasahara @ flickr

On the day that the Open Public Services White Paper was published  (which can be found here – pdf) – which couched in the comfort of positive words like ‘choice’ , we would do well to heed the warnings of the way in which social care was sold off in chunks, from public to private and reflect on whether it is better to allow care homes to ‘fail’ in order to prove that the strongest will rise to the ‘top’.

The problem is that Southern Cross WAS the strongest. It did rise. It also speculated on property and ownership transferred away from the core business base of providing care and homes for those who needed both.

But on a more pressing issue, what will happen to those who live in Southern Cross homes and work for Southern Cross homes.

As the Independent says

Analysis by the GMB union revealed the names of 80 landlords who own 615 of the homes, many of which are subsidiaries of larger companies registered overseas. This makes it much harder to obtain financial information about the companies as rules governing accountability and transparency, especially in “tax havens” such as Jersey, Cayman Islands and British Virgin Islands are significantly more lax.

In addition, the GMB was unable to trace more than 120 landlords, which mean thousands of people are living in care homes where the identities of the owners and directors are unknown.

In the absence of full company accounts and other relevant information, such as the names of directors, it is “nigh on impossible” to assess whether they are suitable to run care homes funded in large part by public money, according to Andrew Craven, GMB statistician and researcher

At least the ‘Department of Health’ spokesman says

“Whatever the outcome, no one will find themselves homeless or without care. We will not let that happen. Today’s announcement does not change the position of residents. The Care Quality Commission will continue to monitor the services provided… We have been in constant contact over the course of discussions and remain ready to talk to all parties.”

That’s reassuring. Or not. Would that spokesman or anyone in the Department of Health want that level of uncertainty lying over their head or the heads of one of their parents? The residents of the homes will not know who their landlords are or whether they are fit to run care homes at all. Of course no-one will find themselves homeless – it will be the local authorities, the elected local authorities who will have to spend and fret themselves out of this one – nothing to do with the Department of Health’s reassurances – unless the Department of Health is going to compensate those local authorities for the time and cost they spend to ensure the welfare of residents of Southern Cross homes that may close.

As for the CQC, I think we have established that it is unfit for purpose and unable to regulate a care industry that has grown too large and too costly to be regulated efficiently. How about an idea? The Department of Health invests very heavily directly in the CQC so that they can provide at least twice-yearly, unannounced inspections together with a host of lay visitors attached to every single residential and nursing home?

No, the Department of Health is weedling out of this crisis as it will weedle out of the cost of ensuring that the residents of Southern Cross Care Homes are not made homeless.

Now, I want to link some of these issues to the Public Service White Paper that was published yesterday and particularly one or two sentences I picked out.

Firstly

In the context of rolling out more extensive ‘choice’ in other areas of government, the paper says

‘We will ensure that individual service providers are licensed or registered by the relevant regulator for each sector (e.g. the Care Quality Commission) so that those choosing services can known that providers are reliable, without stifling cost”

Does that not lead to a tiny little shiver down ones spine? The CQC is being held up as a reason to trust in this extension of ‘choice’.  Has noone mentioned the cost of good quality regulation, either.  It’s worth reading this post at The Small Places for more consideration of the way the CQC regulates social care services. The CQC has failed to regulate and the care sector is failing to deliver on personalisation so far. The care sector has had time to learn as well. We had direct payments for many years and before that the ILF (Independent Living Fund) which allowed payments to be made directly to adults with disabilities to choose care. The system should be sophisticated enough by now to deliver good quality, equitable services but it has taken many years even to reach this point. There’s a long long way to go.

Secondly

“The wider public sector has much to learn from local authority successes in commissioning, for example, in adult social care”.

See, look at us, government, we’re a success! Success. This is the end-result of success. Adult care commissioning is not a success. It has not extended choice unless of course (and I think I’ve found the key) success is based on the principle of privatisation and provision of contracts to the those who deliver at the lowest cost regardless of quality. That is the adult social care ‘success’ that the government is lauding in the Open Public Services White Paper.

We are dazzled by words such as ‘choice’ and ‘open government’  but they have no meaning outside ‘lowest cost’ and ‘discharge of responsibility’.

Think of Southern Cross. Think of Adult Social Care. It’s coming to our homes, our hospitals, our high schools and our highways.

So much for my week of positivity!

Elaine McDonald, Kensington and Chelsea and Dignity

Yesterday, the High Court ruled in the case of R (on the application of McDonald)  v Royal Borough of Kensington and Chelsea. This was a further appeal by McDonald against a previous decision at a lower court.

Elaine McDonald is 68 year old woman who worked as a ballerina in her younger days. The press seems to be a little fixated on her former career, and she does have a more glamorous background than many who come to rely heavily on social care so perhaps it is no surprise. Ms McDonald suffered from a debilitating stroke in 1999 and had a further fall in 2006 which led to very poor mobility.  Although not medically incontinent, she required assistance to use the commode during the night.  She had been provided with overnight support to meet her assessed needs related to continence during the night however Kensington and Chelsea were suggesting that this need could be met by substituting this assistance with the provision of continence pads during the night which would, by their nature, demand that Ms McDonald remain in these pads until carers could come in the morning and at intervals to ‘change’ her.

sulle punte

frabattista @ flickr

I wasn’t surprised by the decision by the High Court because there are precedents that led the access of local authorities to resources to be a factor in relation to the provision of services.

In my own working experience, it is impossible to access any kind of home care support overnight except in some very specific cases where there is very high need support and even then, it is much much more likely to be provided to younger adults with physical disabilities. I can count on the fingers of one hand the amounts of times I’ve come across local authority funded overnight support in the last 10+ years of practice.

Sometimes I have to take a step back from what I regard as ‘normal’ practice to understand the outrage at this decision. I realise how I become attuned to ‘local authority’ think and ‘budgetary’ think and that’s quite an uncomfortable thought.

We get used to applying different definitions of ‘dignity’ and what is acceptable because we are aware of the thousands of Ms McDonalds that require support and the existence of a  finite resource. So do you support the Ms McDonalds and assist them to provide a fuller and more dignified life at home or do you provide 8 Ms Smiths with respite care over the year. These are the realities of the decisions and it shouldn’t have to be so.

Perhaps that’s why I’m less surprised by the McDonald ruling and less surprised by it.

There are though horrendous inequities in our system of the provision of social care. Where Ms McDonald in Kensington and Chelsea may be receiving a vastly different service from a parallel Ms McDonald in Newham.  I would venture a guess that there are thousands of potentially very similar cases to Ms McDonald bubbling under the surface ‘in the system’ but because they are not ex-Prima ballerinas and don’t have the will, way and means to bring cases and involve solicitors, we will never know about them.

If anything is, quite literally, the ‘dirty secret’ of social care and health care provision particularly for older adults, it is this.

We have different standards of what we class as being ‘dignified’ for ourselves as for others. What might class as dignity to an older adult has less value and invites less spending to an equivalent younger adult with exactly the same care needs. Those who shout loudest get the most – as far as care is concerned and as far as public interest is concerned.  The shame and pity of the ‘personalisation’ agenda and the flawed implementation of personal budgets in social care have exacerbated this problem further rather than provided a channel to allow for a more equitable system of care delivery.

It sometimes feel cruel and harsh, because it is a cruel and harsh system that it perpetuated by discriminatory systems. Would the warehouse-style very large residential and nursing care homes with 100+ beds be acceptable for younger adults with similar care needs? I don’t think so.   I don’t mean to imply that every large care home is bad and every small care home is good. That isn’t the case. It’s about a fundamental reassessment of what is acceptable in the provision of care for older people in our society.

Lucy at The Small Places covers the issue of dignity through caselaw, in an excellent, thorough and educational post.

I make no apology for my less erudite post and thoughts.  The more I work and the more I reflect, the more interplay I see between the basic conceits of ethics and ethical judgement in the role that I play as a part of this system that condones this mealy mouthed interpretation of human rights merely on the basis of cost and resourcing issues.

It is accepted because our society is inherently ageist. We don’t want to think or pay for the care of older people. We care more about our collective inheritances and potential house prices than the more collective thoughts about where the boundaries of an acceptable level of care and dignity lie.

If anything, this has impressed on  me the importance of constant reflection on my practice and my work. I can advocate to an extent, from within the system, for the dignity of those like Ms McDonald and I try to. Some I win and some I lose but as long as I make my voice heard through every step of the process I can help to feed the voices ‘from the front line’ back to the more senior managers.

I make judgements and I am the mouthpiece of the local authority. I am an employee but the second that I become complacent, the  moment I stop reflecting on the effects the decisions I make have and the instant that I join that local authority ‘group think’, I lose my ethical compass and my professional judgement.

I talk a lot about important qualities of social workers and social care workers. Respect, empathy and to that I’d add advocacy. It might not always be seen in the internal battles that we fight, but we have to try to fight so as not to accept a ‘normal’ that is defined on the bank balance sheets of the local authority accountants.

Initial thoughts on the Dilnot Report on Funding of Care and Support

Scheduling and exhaustion meant I didn’t have time to look at the Dilnot proposals in detail yesterday so this morning I have fired up my browser and am going to make a few initial comments on the baseline main recommendations and hopefully over the next few days can look at some of the details.

The Dilnot Report on Funding of Care and Support runs at 82 pages.  It attempts to forge a solution for the currently antiquated and inequitable system of care funding that is currently in place. Much talk has been made of the current threshold of £23,250 of assets, at which people currently become responsible for paying for their own care services but little made of the current discounting of homes in certain circumstances and the ability to raise a charge on a property to postpone payment of costs for care services. Nevertheless, this threshold was deemed as being too low. People who own houses like to keep houses for children. People don’t like those who ‘haven’t worked as hard’ or ‘saved as much’ getting something for free.

The system is broken though, don’t get me wrong, I just think the focus of the discussion has been too much around middle class fears of actually paying for something they believe should be free. Now, I’ve got that off my chest, back to the report.

The main recommendations are

- to cap lifetime costs of care between £25,000 and £100,000 – with a suggested threshold (which is used throughout the report for ease) of £35,000

- means-tested assistance will be extended to those who have between £23,250 and £100,000 of assets.

- Those who ‘enter adulthood’ with support needs will not be means-tested and care will be provided free.

-Universal disability benefits will continue but may be some differences in names regarding Attendance Allowance. (erm.. DLA?).

- There will be a cap on so-called ‘hotel costs’ in residential care between £7,000-£10,000

-There should be a national, portable eligibility framework which is more transparent.

- A government awareness campaign about planning ahead and preparing for potential age-related disabilities. And their costs.

- There should be a new information and advice strategy to help people through the confusing forest of knowledge.

- Better carers support and information.

- More health and social care integration

Of course, these recommendation run alongside the Law Commission’s report for changes in adult social care law. Together they could create a much better and clearer system than we currently have.

The ‘lifetime cap’ allows for insurance policies to be generated and probably very profitable ones too for the insurance companies. Most people do not need high level social care provision but the fear generated by the media is enough to drive right minded people into the arms (those who can afford it and who have substantial assets) into the arms of the insurance companies. I’m not sure how comfortable I am with the lifetime cap on care costs. It means the more wealth someone has, the more they are protected. I understand the logic behind it in that noone chooses ill-health and disability but the more than government spends on those who do have substantial assets, the less there is for those who cannot afford it and the higher the criteria to access support rises.

I just have a few queries which may be answered in the details. If Mrs Smith has a house worth £300,000 and she lives alone with no other substantial assets – say, for example, she has savings of £10,000 – is her house sold to release the asset worth up to the cap of £35,000 – assuming she doesn’t have an insurance policy? If she chooses to live in a care home which is private, but then the money runs out, will the local authority still move her? Will she ‘top up’ the local authority fees, paying above the ‘cap’ to do so? What is she lacks capacity and has no family?  I suspect all these answers are in the report but they will be questions I will be looking for.  The system of deferred payment is mentioned and I’ll hunt around for clarification.

The cap though, seems to be there to protect middle class votes.

I do, however wholly support the increase in the level of means-testing. I think it is entirely right to continue to means test up to £100,000 and I’d even go further than that. I don’t have a problem with mixed funding, I am just not entirely comfortable with the capping.

Again, the clarity of the coverage of those who ‘enter adulthood’ with care needs is entirely right. There is a necessary distinction between working age adults with care needs and older adults with care needs but quite rightly it is wrong to have a distinction fixed at a specific age. Indeed, Dilnot proposes that those who develop long term care needs before the age of 40 should continue to have a zero cap and costs should be met fully by the state. Above the age of 40 there will be some kind of tapering of the cap up to retirement age where the full proposed £35,000 cap would be reached.

Regarding the accessibility of universal disability benefits, Dilnot clarifies that he does not propose any reform that would lead to anyone losing their disability benefits and that attendance allowance will continue. I do wonder though how this ties in with the government plans to remove 20% of DLA claimants.

There are some recommendations though to change Attendance Allowance (AA). Firstly to change the name to something more understandable and an appreciation that many who are eligible for it do not claim it. That absolutely reflects my experience.  People who reach the cap when the government takes over payment will not continue to receive Attendance Allowance (or whatever it will be called) because the government is fully paying for their care needs – which makes sense to me.  The Personal Expenses Allowance (PEA) is proposed to continue – this is the payment that is made to people whose costs are met by the government in residential care and is currently about £23 pw – there is a suggestion that it should increase but not a recommendation.

The cap on hotel costs is excellent news in my view because I saw this as a potential ‘get out’ clause for residential homes. I do want to know how some of the private homes will adapt to these new systems though and what the cap will mean for overall quality of care provision.

The idea of clearer, portable assessments is a good one and long overdue. Eligibility criteria interpretation can differ wildly and there needs to be more transparency.   The minimum threshold would be applied at the ‘substantial’ level of care so I wonder how this portability will work for those who live in areas that meet lower levels at present.  It seems that there is some kind of recommendation to do away with FACS over the longer term.

Can’t be soon enough – a new assessment framework will be developed ‘with experts’. Please please please can front-line practitioners be involved in these developments – not just people who professionally develop policies and have never needed to use assessments in their lives. This is why we end up with unusable systems. There is also a way of building self-assessments into these new models. That’s the idea anyway.

The last recommendations about building awareness and improving quality of information seem to be sound all round. Nothing to argue about there.

I am interested in the recommendations as they relate to carers. As far as I am concerned, I want more than just an assessment for carers, I want the provision of more services. Supporting carers very well both financially and with practical and flexible support is probably the one aspect which can potentially save the government more money in the longer term than anything else – but more than that, it is an issue of ethics and morality. I know that doesn’t often come into government services but it’s something I feel very strongly about.

There is more commentary about the details of Dilnot in Community Care, the Guardian has extensive coverage (including an article I wrote before the details were known).

I also recommend Arbitrary Constant for links and discussion about Dilnot.

Waiting for Dilnot

The Dilnot Commission on Care Funding and Support is due to report back to the government on Monday 4th July.

At Arbitrary Constant there is some useful background reading about the Green and White Papers which were published by the previous government regarding changes to the funding of adult social care.  It will indeed, by interesting to compare and contrast with the proposals set out on Monday.

The scare stories about the Dilnot report  started emerging from the press over the weekend with the Observer reporting on a £35,000 cap on payments towards care while the The Times (£) write about a cap of up to 30% of the value of a property.

The very thought about paying for care at these levels seems to strike fear and anger in the  heart of the property-owning middle classes and perish the thought that they might actually need to pay towards the cost of their care. Although it’s important to remember that social care costs can be potentially incurred at any point in someone’s life. It isn’t necessarily about ‘saving up’ till old age or insurance schemes at the age of 60. What if you need the services at the age of 55 or 25?

The King’s Fund has a post which underlines the major issues and potential obstacles to implementation.

And the Guardian yesterday had a good summary piece which seems to have some of the potential details and difficulties highlighted

Meanwhile Community Care reports that there is expected to be a hostile public reaction to Dilnot. The article says

That was the warning today from housing and care provider Anchor, who found that 44% of Britons believed the state should fund all their care costs in a survey of over 2,000 people.

Which is the crux. No-one wants to pay for what they think they should be getting free. The payments into the ‘system’ and into ‘national insurance’ should cover care costs. The thing is, they don’t and they can’t.

Cost have escalated. It isn’t just about care home fees, home care packages and support plans delivered through personal budgets are increasing as people with higher care needs can remain at home for longer.

The sometimes seemingly arbitrary divide between health care needs (free) and social care needs (means-tested) can generate understandable anger as systems like the continuing healthcare assessments can be incredibly complicated and seemingly counter to common sense understandings of what ‘health’ care actually is.

There seems to be a proposal to separate out ‘hotel costs’ of the care home from ‘social care’ costs which will, I expect, lead to all sorts of interesting accounting mechanisms to ensure that the highest fees can be garnered beyond whatever system is implemented.

But I want to be hopeful.  Dilnot is unlikely to be popular in ‘Daily Mail’ land, there are murmurings in ‘Guardian’ land too. Maybe we just need all parties to actually work together for the good of the whole at this point rather than worry about the cost in votes that any change in a system might incur.

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.

Mrs J and the Mystery Bristol Care Home (update – it’s Amerind Grove Nursing Home)

There is a story on the Community Care website this morning about an ombudsman’s report relating a woman, Mrs J, who was placed in a care home in Bristol.

Bristol waterfront at night

lovestruck@flickr
This was a  care home which was not only rated ‘poor’ or had no stars under the old rating system that doesn’t exist anymore but from the time she was placed in 2005 until Feb 2009 when she finally did move (only to die later that year) , the responsible council – Bristol City Council – did not monitor or review her placement adequately.

Her son, Mr P, asked for his mother to be moved however as the cost of the identified ‘replacement’ care home was higher than the cost that the local authority would pay, he had to make ‘top up’ payments.

The Care Home which strangely is not named in the report – and I find that rather suspicious to be honest, had had a number of safeguarding alerts over the period of Mrs J’s placement there. It had received a zero star rating and there had been a couple of ‘freezes on admissions’ – probably relating to the safeguarding alerts.

The council investigated and placed the responsibility entirely on the care home however the ombudsman found that the  council had failed Mrs J as it was the commissioner of the service

As the press release on the site of the Local Government Ombudsman says

The Ombudsman considers that there was maladministration in the Council’s reviewing and safeguarding strategy and is concerned about the poor communication between the Council and the family. The Ombudsman also finds that the Council had not properly considered the circumstances around Mrs J’s move to an alternative placement, which had led to Mr J contributing to the cost.

For the pain and suffering caused by the lack of appropriate safeguarding and review procedures, Bristol City Council were ordered to pay compensation to Mrs J of £6000 and to Mr J of £500 as well as pay back the contributions Mr J made towards his mother’s care between February 2009 and October 2009 when she died.

That’s the background and now my thoughts about this – deep breath.

It’s horrific. Firstly not everyone has family that are as determined as Mr J to pursue and stand up for residents in care homes. If Mrs J had not had a son, this poor practice and abusive situation may have continued with perhaps, some perfunctory safeguarding alerts but with little action in relation to the management of the care home taking place. The care home working in conjunction with the CSCI (predecessor to the CQC as inspection service) where people living in homes that are rated as poor (of course, they are not rated at all now – easy get out of this situation?) continue to do so without batting an eyelid as long as the fees are low enough to be met by the local authority.

Another thing – what about everyone else living in the same care home? Seriously. Were they moved as well?

Why is the name of the care home not given? Surely this information should be transparent. A government (and this not not just the present one but the previous one too – I am making no party political point here) which is bound to link choice to care decisions is finding it quite handy to mask the names of inadequate and frankly, dangerous, care homes.

I did a search of care homes in Bristol which had poor ratings at the time that the rating system was abolished in 2010 and there were none listed. Perhaps they had managed to haul one more star. These are the homes I found that had one star. It may well be none of these homes but it makes pretty depressing reading looking through inspection reports from ‘adequate’ care homes.

This raises a number of issues – mostly why on earth can’t family members and social workers making placements in residential homes know which home it was that failed so appallingly? Isn’t that how ‘markets’ work? Or is it through hiding behind reports which obfuscate and confuse and seem to dance around the real issues of care – in the long periods between when they appear.

Finally, a thought or two about the way the council were criticised and censured. £6500 will not deter a council from acting in the same way again. The cost of fully staffing/training a competent review team may be much much higher than that. Quality Assurance Teams in the councils are one of those ‘non-jobs’ or ‘back-office’ jobs that Pickles seems to like to mock but in the face of a national regulatory system that is little more than a joke, they could and would provide a great service to citizens who need placement – particularly those without strong advocates and family members to stand up for them.

We need these stories to have more publicity though because there needs to be a greater understanding of the challenges faced and the poor quality that has almost become tacitly acceptable in the ‘free market’ of care.

The imposition of the market economy into the care sector hasn’t allowed the cream to rise to the top for those who are wholly reliant on support for placement from local authorities. It has allowed care homes which charge low fees to thrive despite poor care provision because it suits both parties to allow them to continue and to allow their names to be protected.

This makes me angry. I did not come into social work to deliver what I consider to be poor care or poor care services. I want everyone to be able to access good quality care and support regardless of their income, savings, property values or their family or friends’ willingness and ability to advocate on their behalf.

In a world of rose-tinted spectacles through which the Care Minister seems to envisage that people like Mrs P will have more ‘choice and control’, we have to make sure that basic minimum standards of care are respected for everyone who is reliant on them.

And we aren’t.

UPDATE – BBC have published the name of the care home  - it is Amerind Grove Nursing Home owned and run by BUPA.   Mrs J is Mrs Iris Shipway.  This is the report from 2008 which gave Amerind Grove a 0 star rating.  It is a 171 bedded home. Stop and think about that for a while. 171 people in a care home. That’s big business. That’s not a ‘home’ – that’s warehousing. Would we place younger adults in 171-bedded units. Let alone poor 171 bedded units. And what about the other 170 people living there when Mrs Shipway’s treatment was so poor. Can we see how the large companies have local authority commissioners ‘over a barrel’? They would not be able to find alternative placements for that amount of people.

The answer is less institutionalisation – more creative thinking about alternatives to residential and nursing cares – the answer is not 171 bedded homes.

Rant over.

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.

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