Direct Payments and care homes

One of the questions being considered for inclusion in next Spring’s social care White Paper is whether people should be able to use Direct Payments to pay for residential care, which at the moment is unlawful. The personalisation group of the White Paper engagement team is leading on this issue, so I’m very much writing about this with my own views, not in any way as co-lead of the prevention group.

My understanding of the rationale for excluding residential care users from Direct Payments, was that people may have been encouraged to buy the same old thing they were being offered before, which would not then amount to a radical change in the choice of provision out there. I’ve written a number of times about the ways in which the state and professionals have proved adept at assimilating the mechanisms of personalisation into their existing world view; I’m sure that having the option of transferring residential care users onto Direct Payments would have added to that problem.

I’m equally sure that the two-tier system which has resulted, with people who continue to use residential care excluded from one of the key aspects of personalisation cannot continue. It just doesn’t feel fair that I should lose a key route to choice and control when I move from receiving home care to a care home. However, I’m equally sure that opening up Direct Payments won’t by itself transform residential care. It will need to be part of re-thinking how care homes work. Community Care’s recent article on care provider Dimensions, which attempted to introduce more choice and control in one of its care homes, shows that addressing staff expectations and practice was more important than introducing an individual service fund approach to personal budgets.

It’s also worth noting that older people have been spending their own money on care homes for years, without the private care homes market establishing a reputation for forging ahead on choice, quality and value. As the Southern Cross debacle demonstrated, being an individual consumer of the product of an uncompetitive industry is not a very empowered place to be.

A colleague objected to a recent tweet in which I asked whether introducing Direct Payments for over and under 65s who use care homes would have very different connotations.

Responsibilities, not just needs?

When I started working in social care, I remember being told about Maslow’s hierarchy of needs. Maslow represented human needs in a pyramid, with basic, physiological needs such as the need to eat at the bottom, followed by the need for safety, the need to feel loved and like you belong, with the need to “self-actualise” – to be all that you can be – at the top. He believed that you had to meet your base needs before you could pursue higher needs, with self-actualisation something you are only in a position to pursue when your physical and psychological needs are fully met. Maslow has been criticised from a number of directions: firstly, putting self-actualisation at the top of the pyramid reflects the aspirations of an individualistic society and particularly perhaps a particular male view of achievement. It was suggested that someone from a more collectivist society might value community acceptance above expression of self. Others have questioned whether there is any real evidence for human needs to be arranged hierarchically at all.

It’s always struck me as one of those ideas which hides a lot of dangers within its common-sense appeal. It’s a short step from recognising that it’s hard to pursue self-fulfilment when your basic needs are not met, to assuming that people who struggle with the most basic functions may not also have the “higher” aspirations. This is self-fulfilling: when people with severe impairments were placed in de-humanising institutions, it was often indeed hard for them to aspire to anything beyond meeting their basic needs and easy to write people off who were able to confound those expectations when they moved to a different environment (see A box of buttons, below).

And it’s not just collectivist societies who might question Maslow’s view of self-actualisation as being at the peak of human aspirations. Maslow saw sex as one of the base needs,

Sharing your life with an ex-offender

Recently, I’ve been looking into the use of Shared Lives with people who offend.

About 8% of the general population is considered to have a learning disability or a ‘borderline’ learning disability. There is little consensus on the proportion of people in prison who have a learning disability, but the University of Liverpool looked at the people in three prisons in England in 2006-7 and found that 32% would be considered to have a learning disability or to be borderline, 6.7% being within the definition of learning disabled used by the Valuing People White Paper. So about 5,000 people with learning disabilities are in prison on a given day using that definition or 6,800 likely to be eligible for community services for people with learning disabilities. However, there are few community-based services for learning disabilities in the UK set up specifically to address offending, and few programmes for offenders or addiction services have been adapted for people with learning disabilities or learning difficulties.

We feel that there is real potential for the use of Shared Lives for ex-offenders, particularly for people who have learning disabilities.  ‘Darren’, who has a learning disability, moved in with Shared Lives carers ‘June and Rob’ six years ago when he was 18. He had committed serious sexual offences in his teens which had led to his being completed rejected by his family. Because of the level of risk, probation and social services were unable to find a placement in the whole of the region, other than a service which quoted £5,000 per week

Time to ditch the RAS? Part 2.

In an entry a couple of weeks ago, I identified three problems with the current way in which an individual’s needs are assessed, then their ability to pay, and then their social care entitlement converted into a cash amount, which they are helped to spend. I suggested that, even done well, the system had these problems:

1. The assessment of your needs is based on you proving how bad things are. You might even have to wait for things to get worse before you become eligible for expensive support, when making cheaper, preventative support available would have been much more cost-effective.
2. The addition of extra assessment and planning stages to the existing system, in order to convert your needs into an appropriate cash personal budget, has added bureaucracy. There is actually more gatekeeping than ever in some areas.
3. The process focuses everyone on the money, which makes it harder to focus on outcomes and being creative.

I promised to think up some solutions to those problems, and asked you for yours.

The comments you were kind enough to post were very interesting. There was some consensus around the problems. No one believes that giving people the chance to control the money that is spent on them is the wrong aim, but lots of people would like it to be simpler, quicker and fairer to get to that amount of money, with fewer restrictions on what it is spent on. Several people feel that there is no way round the need for a RAS type system, and we should accept that reality and focus on making it work. If you put identifying the service first, you’ve returned to the old system; if you put identifying the budget first, you need to base that budget on costings based on a range of likely services. Few contributors, I felt, could articulate a practical third way.

Resource allocation systems build in two opportunities for professionals to exert control: first in setting an indicative amount, then in signing off (or not) the final budget. If it is never going to be possible for the state to relinquish budget sign-off completely, how could that control at least be eroded or tempered, without leading to bankrupt councils?

At a corporate level, council finance directors cannot relinquish overall control of budgets: it’s their job not to overspend. There is a tension between this need to exert control at a population level and the desire to relinquish budgetary control at the individual level. We could reduce that tension in a couple of ways:

First, and least likely, we could give council finance directors a breathing space where, if they can produce balanced budgets over five years, their budgets can be guaranteed for that period. This would allow councils to invest in prevention and to look more kindly on individuals who need to invest in non-traditional interventions which might prevent greater need later on. It’s hard to imagine this happening. The evidence base for many preventative services is weak and the government would need to find money up front and underwrite the losses if council’s plans didn’t work out.

Secondly, we could help people who use services act a little more like finance directors,

Some consensus on the problem, solutions prove harder…

There has been an interesting debate on the LinkedIn group called “The Personalisation Group to revolutionise social care” (http://www.linkedin.com) about my last blog entry. I’ve cut and pasted the contributions as comments at the bottom of the last entry.

Martin Routledge (ex DH, now In control and Think Local, Act Personal lead) warned against any suggestion that there was a golden age. I agree that there were of course good reasons for shaking up the system and the RAS was probably the only credible and widely understood approach to managing the money at the time.

Veteran disability rights activist, consultant and trainer, Simon Stevens outlines how his council effectively took a different approach, whilst the RAS is, in his view, ” just itemised billing on an old system”. In a recent comment he says, “A good assessment is a piece of art and not a work of science….It is important to remember, personal budgets were never what was intended, and it was born out of the failure of individualised budgets where the funding streams were supposed to come together……Life is complex and fairness is subjective so assessments must be reflective to individual circumstances. I have heard RAS described as an mechanism to keep social workers ‘on the straight and narrow’ rather than users.”

Colin Strasberg agrees that trying to get to even an estimated cash amount first, before interventions have been properly explored, is the wrong way round. He argues that Fair Access to Care (FACS) eligibility criteria, reviled by many, is actually sound, just poorly developed and applied; it needs developing in Colin’s view to move away from a black and white divide between needs which are eligible for support and those which are ineligible. Colin is working on that idea and it will be interesting to see if he can turn that into a workable route to a personalised system.

Jez Ashdown adds, “My experience of working with a number local authorities across the North of England is that the RAS process has never lived up to its intended purpose… In a system where the resources available fail to meet the need the primary function of that system will be to ration, or allocate resources to competing priorities. In the case of social care this tends to mean that nearly everyone gets less than they need.”

So what we’re all agreed upon is that there are still huge challenges in turning the ideal of choice and control into practical reality, but what we’re short of are detailed, workable alternatives to the RAS…. I’m still drafting my attempt at this – and fully expecting to be shot down in flames when I post it!

Please keep the comments coming…

Time to ditch the RAS?

Giving individuals the option to control the money which is spent on meeting their needs feels to me to be self-evidently a good thing. There is great – and massively undervalued – expertise in the social work profession, but social care is not like, say, heart surgery, where I would probably be happy for most decisions about my care to be taken by the experts. Social care is more ambitious than heart surgery. It doesn’t just want to help your body function, it wants to be a route you can take towards living a fulfilling life. A surgeon knows a lot more than I do about how my heart works, but even the most skilled social worker will only ever have a rough idea of what makes me tick.

So if putting me in charge of the social care resources attached to me makes sense, and it’s also a given that budgets are never going to be infinite, what is the simplest, clearest, fairest way of allocating a budget to an individual, which recognises that there have to be some limits on how much people can spend?

The current process in most areas is a little like this:

1.  The individual is assessed to see if they are eligible for state support.
2.  They are also assessed to see if they are eligible for that support to be provided free, or if the state will charge them some or all of the cost, according to their income and savings.
3.  A system (a Resource Allocation System or RAS) is used to give people a rough estimate of how much money they are likely to be entitled to spend on social care. This estimate is proportional to their level of need.
4.  The individual is helped to plan to spend that money. The RAS is only (in theory) used to produce an estimate, so it might transpire that the individual needs more, or less, than the estimated amount, in order to meet their social care needs. When this happens, the amount allocated to them can be changed to ensure they can afford to purchase the support they need, and that they are not given more money than they need.

Let’s assume that that process happens fairly and transparently and that the professionals involved don’t take short cuts, such as treating the initial budget estimate as the final figure, or giving you a limited list of the services you can purchase, rather than helping you to think creatively about the best intervention to meet your particular needs and wishes. Even done properly, this process still contains three major problems.

Care: industrial scale or cottage industry?

There are, we are often reminded, 30,000 residents in Southern Cross’s care homes. There is an argument about to what extent it would affect those residents if Southern Cross’s approach to funding its expansion, which relied heavily upon property speculation during the boom, ultimately led to its demise as a company.

Some people say it wouldn’t make any difference to residents – if a care home is viable it will simply be sold on to another provider. The Association of Directors of Adult Social Services have emphasised the need for councils to continue sending residents to Southern Cross homes to keep the company afloat.

But if it makes no difference to residents whether or not the company stays afloat, then why does it matter if it continues to have enough ‘customers’? Whereas, if Southern Cross going bankrupt will make a difference to them, then it cannot be in an individual’s interests to be “sent” to one of their homes. 

Individuals are not commodities, to be traded by councils and care providers, even in the interests of what might be considered the greater good. Councils are under an obligation to individually assess older people and to support them to make the best choices about care for them. A blanket recommendation to push people towards a care provider which may not be able to offer stability is unacceptable.

I think it’s hard to maintain the argument that residents have nothing to fear from Southern Cross going bankrupt. In order to attempt to stay afloat, the company has just cut 3,000 front line caring jobs. In other words, here we have yet another situation in which rash decisions made in order to maximise profits result in negative consequences for people who had no part in those decisions. It was of course, those residents’ money (or in the case of those whose care was state-funded, taxpayers’ money), which was hived off in the good years into the pockets of bosses and shareholders.

The Southern Cross crisis, coupled with the Winterbourne abuse scandal uncovered by BBC’s Panorama, should initiate a pause for thought about the relative risks and benefits of industrial scale care and support

A box of buttons

The other day I met the outgoing and much respected national Director for learning disabilities at the Department of Health, Anne Williams, who told me a story that made us both a little tearful.

Anne had met a lady who’d lived for countless years in a long stay hospital for people with learning disabilities. She had no speech, never went out and shrieked whenever someone approached her. The one thing she liked was her box of buttons which she sat and ran her fingers through.

Anne met the lady after she’d left the hospital and was living in a small shared home. In a short space of time, her life had improved immeasurably. She was able to interact with people, no longer shrieking in distress when approached. She had used the bus for what people would have assumed was the first time, if it hadn’t been clear that she remembered how to use it, probably from memories of going out as a child. Rather than receiving whatever was on the hospital menu that day, she was able to tell Anne what she had chosen for her lunch by taking her to her fridge and laying out her choices on her kitchen table.

To think that, needlessly, that lady’s life had, for decades, been reduced to a box of buttons, was what we found so moving about that story.

Now there are few long stay hospitals. Whilst most are staffed by good people doing their best, the Winterbourne scandal

Panorama expose #2

Thanks for the comments to my previous blog. There’s been lots of reaction to the programme, including learning disability organisation BILD calling for an urgent government review of the legislation and inspection process (see the article in today’s Society Guardian).

Another article in the Guardian, on ‘mate’ crime, shows that it isn’t only institutions which can be breeding grounds for abuse. But I agree with Mencap that there is no place for locked ‘hospitals’ housing 24 people. The £3- 3500 per week spent on housing patients in an environment with no attempt to provide any semblance of ordinary life, staffed by unskilled, unqualified workers, could have purchased fantastic community based care. By way of comparison, Shared Lives costs around £250- 450 per week. We have great case studies of people who have been labelled ‘challenging’ when living unhappily in institutional care thriving without incident in a Shared Lives setting. For instance, South Tyneside recently saved £50k per year on the cost of one ‘challenging’ individual’s support.

This morning we hear that four people have been arrested. Why only four?

Panorama’s Castlebeck expose

I’m sure anyone who watched Panorama tonight would have been appalled at the systematic and violent abuse of adults within a Castlebeck facility supposedly offering care and rehabilitation for people with learning disabilities and complex needs. The Castlebeck ‘hospital’ (Winterbourne in Bristol) secretely filmed is a locked unit housing 24 adults in conditions in which there was nothing for them to do except wait for the next round of abuse from staff, which included assaults, cold fully clothed showers, water poured on people outside during Winter and constant threats and intimidation. Arrests have now been made. This ‘care’ cost the taxpayer around £3000 per patient per week. Inspectors, CQC, failed to intervene despite three allegations of abuse from a senior nurse and a recent conviction for a staff member caught abusing a patient. They have apologised and propose to carry out 150 unannounced hospital inspections. Ironically, Castlebeck boasts it is the winner of the HSJ/ Nursing Times Top 100 Healthcare Best Employers award 2010.

Deeply depressing. How many Winterbournes are out there amongst the remains of the UK’s long stay institutions? No form of care and support is immune from abuse, but the Castlebeck horror story illustrates the real risks in institutional care which is locked away from view and makes no attempt to value people as individuals or to help people aspire to ordinary, independent living. The perceived risks of support being led more by individuals themselves and of community-based support such as Shared Lives, should be balanced against the protection they offer from institutionalisation.

This shocking case also illustrates the need which is common across social care – for everyone to have an independent advocate to whom they can have access whenever they want and who will speak up for their rights come what may. Advocacy simply isn’t part of the current system and, at a time when care and support is supposedly being reformed to give people ever greater choice, the decreasing availability of support to make choices is a gaping wound in our sector.

Something that has left a really bad taste for me though, is not just the failures of the social care sector, but also the failures of the BBC team