Personal Budgets, Dementia and Risk

17 08 2013

I found this paper from the British Journal of Social Work and found that I couldn’t resist writing about it. It’s called “Inherently Risky?: Personal Budgets for People with Dementia and the Risks of Financial Abuse: Findings from an Interview-Based Study with Adult Safeguarding Co-ordinators” and written by Gill Manthorpe and Kritika Samsi.

I make no apologies for choosing and writing about a paper which is close to my heart. Having worked for a number of years with people with dementia, I felt strongly that the models which have been put forward to push personalisation and personal budgets have not been well-adapted – or indeed – adapted at all – over the years to be truly inclusive and meet the needs of this (and other excluded) client groups.

The paper is a result of interviews with 15 adult safeguarding coordinators in 2011 and there are some useful learning points to ensure that these issues and concerns are learnt from and built into designs to make the personalisation agenda work for everyone and not just (as is currently the case, despite the so-called ‘making it real’ (whatever ‘it’ is supposed to be because I’m not sure) policy push which seems fashionable with the government at the moment – because it presents easy solutions to easy questions – rather than actually spending time asking more difficult questions – like what is ‘it’ and why is there so much language which excludes people in a policy which is supposed to epitomise inclusion).

But back to the paper before I get too distracted!

The paper starts by presenting a background to the personalisation agenda and why increasing choice is definitely A Good Thing in social care. There’s certainly no argument there.  The policy of direct payments has been rolled out over a number of years and is not a ‘new’ system  but the personal budgets being extended universally is something that has been a more recent policy push.

Initially direct payments were limited to people who had both the capacity to manage them and the desire to – there was a more recent change in legislation and policy which allowed, increasingly ‘non-direct’ payments to be made – so a third party – a family member for example – could manage the budget on behalf of someone who may not have the capacity to do so.

With more responsibility and choice, comes more risk and while people who are able to make decisions for themselves in relation to risks to them – everything, after all, has risks attached and risk is linked to quality of life as a life without risk would be dull (in my view) – we have some additional issues to be aware of when we are making decisions about levels of risk to someone who may lack the capacity to make those choices.

The paper points to evidence which shows that in  order to extend more productively, direct payments to older people and people with dementia, there may be a need for additional resources – which often have not been forthcoming.

This particular article looks at financial abuse and the connection with direct payments and people with dementia and the effect that the Mental Capacity Act 2005 has had on practice and safeguarding in this area – and the need for social work practitioners to have a decent understanding of the Mental Capacity Act in order not to become too risk averse in the face of potentially more positive quality of life outcomes.

 

The paper reflects that there has not been evidence that increased responsibility for budgets for people with dementia led to more financial abuse. The Mental Capacity built in some potential safeguards with a clearer process for delegating a financial lasting power of attorney in advance and making the process clearer when there have not been lasting power of attorneys and when someone does need best interests decisions to be made on their behalf.

One of the issues that fed back from the interviews undertaken as a part of this study was the concern that adult safeguarding coordinators (ASCs) had about potential for financial abuse for people with dementia.

 

ASCs were interviewed at three points as a part of this study. In 2007/8  when the Mental Capacity Act was just beginning to translate into practice, in 2009/10 as the Mental Capacity Act was bedding down and lastly in 2011.

Among other questions the following in particular were asked

        1. How do you think the move to personal budgets/self-directed support will affect the likelihood of financial abuse amongst people with memory problems, cognitive impairment or dementia?
        2. What might be the greater risk of harm?
        3. What might be the improved level of safeguarding?

 

One of the comments read (which reflects some of my own feelings towards the process of the rolling out of personal budgets so I’m shamelessly linking to it here)

The risks are all there and how those are managed. It seems to me it’s been rushed in without a lot of thought. The government didn’t wait for the pilots to complete their work. There seems to be a view that safeguarding is the antithesis to personalisation instead of part of it. It’s a one-size-fits-all approach the government has taken—that it’s great for everybody, but it’s not great for everybody (#4).

That really does reflect what I saw in practice. There was this move from ‘direct payments’ which were definitely a positive development to an equally ‘one-size-fits-all’ move to personal budgets with a preference of delivering them through direct payments. What wasn’t accounted for was where people might have different needs or situations that didn’t fit into the neat case studies or pilots which were presented. It was rushed and the damage to the ethos and the quality of support provided and real choice was impaired by poor implementation.

Some participants said that there was more ‘moral panic’ than was actually justified. People worried too much. Some were concerned about an increase in unregulated workers. If I wanted to criticise the study, and I don’t, particularly, I’d say that Adult Safeguarding Coordinators have a particular viewpoint and it would be interesting to garner the views of frontline professionals.

The other concern raised was managing the risk of unregulated care which happens with direct payments. I don’t think there’s any way around this. There are many debates about the lack of the need for DBS (formerly CRB) checks for personal assistants who are directly employed. There is, potentially, a heightened risk if people are not able to make the decision themselves about the level of risk they are exposed to by not checking on people who provide care to them.

The paper summarises

most participants welcomed personal budgets, seeing them as empowering people by giving them choice and enabling them to state their preferences. In the optimal situation, ‘if you have someone you can trust and have your interests at heart—it might be really good—and (they can) purchase services tailored for you and (that are) outside the box’ (#11). Denying people with dementia without capacity the opportunity to make these choices was deemed by most as unethical.

That’s pretty much where I’d stand with them. Often direct payments do offer a better service than local authority managed services but there’s often a reliance on ‘someone you can trust and has your interests at heart’ – namely an advocate or a carer. Where someone with dementia doesn’t have this representation, they may be denied the opportunity to have an equitable service. This is my main concern with the current set-up. There isn’t scope for individual service funds which allow more ‘different’ care management approaches and local authorities do not allow additional time for care planning where non-directed advocacy is needed. In my own opinion, a resource allocation system would be tinkered to weight more heavily towards those with dementia and allow for the purchase of an individual advocate who specialised in non-directed advocacy for people who lack capacity, who is able to make the choices and plan the care in the best interests of the service user with dementia – but this would have resource implications.

The paper talks more broadly about some of the issues raised in the three sets of discussions and how some of the framing changed as the government changed.

The coalition government moved towards direct payments as a favoured delivery method for personal budgets but the issues related to some of the challenges faced by people with dementia were still not raised. Its very telling that little changed in terms of practical implementation for people with dementia over the three interviews.

Concern about more people having access to the finances of people with dementia – friends and family who might not always have their best interests at heart – was an issue.

The findings point to underlying problems of close and distant individuals (carers, ‘friends’ and criminals) accessing control over the finances and assets of people with dementia and thus important parts of their lives. There was particular concern about so-called friends and this may be worth further exploration when thinking about the social networks of people with dementia.

There is also the issue that some family and friends may not welcome the additional burden of managing a personal budget through a direct payment without the extra support which might be needed.  As the article says

People with dementia and local authority personal budget systems rely, to a great extent, on the kindness and honour of both strangers and carers.

The article concludes with the message that the Mental Capacity Act, while helpful in determining parameters and management of risk to promote the wellbeing of people with dementia who may be at risk of abuse, it is important that social work practitioners and people working in social care settings are actually aware of, and use, the Mental Capacity Act well and do not become too risk averse.

It’s an interesting paper and one, for me, that touches on a key issue. My sadness is that there has been such lack of progress and intransigence about promoting different ways of implementing a quality service provision which is fair to people who may lack the capacity to make decisions about choosing. The push towards ‘choice’ is all very well – and it is obviously a good thing – but if it leaves behind those who are not able to choose through no fault of their own – it is failing.





‘Personalisation Falls Short’ 18/7/13 (8pm BST)

7 07 2013

The first article to discuss is available free here . It is called “Personalisation Falls Short” and was published by British Journal of Social Work 2012 (1-17).

It raises some of the issues of the discrepancies between the ideal and promise of ‘personalisation’ and the practical experiences.

 

The questions that we will consider is:-

What is ‘personalisation’”? Does the definition in the article work? What would we add/take away? Can we define personalisation in 2 tweets? (there’s a challenge!)

Does this article reflect people’s experiences in practice?

How does the ‘market’ or ‘quasi-market’ affect the practice of personalisation? Do you have any examples from practice (obviously with awareness of confidentiality)?  Where has it worked? Where has it ‘not worked’?

Is Personalisation doomed in a period of cuts? Where does the hope for change lie? How can we, as social workers, affect it?

Is there anything we can do from frontline practice to make ‘things better’?

 

These are questions off the top of my head but if you have better ones or more interesting ones, add them in the comments. The week of the discussion, I’ll add some more thoughts about the article but go away and read and join me on the 18th July!