Personal budgets for people with mental health difficulties to use to find ways of meeting their own self defined needs are more often debated than seen in the wild. Mark Brown reflects on Scottish experiences of making personal, or self directed support, budgets happen and where England might be pursuing a different path.
On 17th of December 2015 the Social Care Elf published a summary by Martin Stephens of the paper Power, Choice and Control: How Do Personal Budgets Affect the Experiences of People with Mental Health Problems and Their Relationships with Social Workers and Other Practitioners?. The paper details ways patients with enduring mental health conditions in England, and the practitioners that support them, are affected by personal budgets.
The paper argues that the ways in which people understand personal budgets and the power they do or don’t involve influences how those budgets work in practice. In England the personal budgets picture is still somewhat muddy. It’s always like Anarchy in the UK (Coming sometime maybe); a perpetual ‘next big thing’ that never quite arrives either in health or social care and is one that excites as much rhetoric as it does action.
Based upon interviews with people with enduring mental health difficulties who currently have personal budgets and the professionals who support them, Power, Choice and Control found there was a degree of ambivalence on the part of practitioners about personal budgets, with the suggestion that some were not comfortable with relinquishing control.
On the face of it, personalisation always looks like an obviously good deal. The proposition ‘would you like to choose what services you receive to support you and what those supports are?’ feels naturally better that the proposition ‘would you like someone else very distant from you with a vague idea of what you need deciding what should be available near you that might meet your need if you qualify for it and they have space on their books?’ In practice, as is often the case with mental health and disability more widely, it just isn’t that simple.
According Stephens’ summary of Power, Choice and Control, much stress was put upon the service user to be their own advocate: “Many participants described taking on responsibility for each part of the process, assessment, support planning and advocating for the plan with social workers and managers. While this could be empowering for some, others found this somewhat of a burden.” Some professionals felt more comfortable when service users were grateful for their budget and some service users felt they should be grateful, being reluctant to negotiate the amount of funding their budget represented.
Power, Choice and Control suggests that direct payments – cash in your bank account after your local authority has signed off the plan you have drawn up – are the primary way that personal budgets in mental health would work. Attitudes to this differ, as Stephens summarises: “Service users gave accounts of what seemed more like a passive approach to accepting the responsibilities of managing their personal budgets, rather than deliberate resistance. They reported a lack of interest in having control or that practitioners just took over and did not give them the chance… some social workers in the study believed that some long-term mental health service users and those who were still unwell were unwilling or unable to assume responsibility for managing the personal budget.”
The equation for the way in which personal health budgets should work could be characterised as ‘What I have + what I need = What is possible’. Unfortunately, this equation in England appears to start in the wrong place, looking more like ‘What is possible = what you can have + what you already have.’
It’s different in Scotland
In Scotland Self Directed Support (SDS, the Scottish name for a personal budget) is law.
In November I was lucky enough to be invited to Edinburgh to contribute to ‘Taking a Chance’ an event on Self Directed Support (SDS) and Peer Support. The event was a kind of ‘how do we make this happen?’ day. I summed up a similar event in Glasgow in August 2012 just before the assent into law of the Social Care (Self-directed Support) (Scotland) Act in November of the same year.
The event I summed up in 2012 was much closer to a ‘should we make this happen?’ day, with a fair few more dissenting voices asking whether personalisation and the taking of personal budgets were a good idea for people with mental health difficulties. The debate was very similar to the issues outlined by Power, Choice and Control. People worried about the capacity of others to manage their own budget, defending other users of services they considered to be less able than themselves. People were suspicious that these personal budgets were a cloak for cuts to services. Service providers were worried that such personal budgets, implemented at a time when their block contracts and grants were being reduced would seriously curtail their ability to provide the range of services that they currently offered. Other fears voiced to me included the idea that SDS turns individuals with disabilities or health needs into employers; giving them the added worry of dealing with payroll, employment law and the like, something that the range of options in law in Scotland avoids. Another concern was that a system moving to SDS would remove the opportunity to vote for the status quo; making people take on self managed services when they really want someone else to manage their care and support. .
In contrast to the last time I was in Scotland discussing SDS, there were far fewer voices opposing the idea or personalised budgets now that they have, in theory, been implemented. This is arguably because the Act takes into account many of the criticisms of the idea of personal budgets. In Scotland SDS can, in theory, be taken a number of different ways. A person’s individual budget can be:
- Taken as a Direct Payment (a cash payment)
- Allocated to a provider the individual chooses. The council or funder holds the budget but the person is in charge of how it is spent (this is sometimes called an individual service fund)
- Or the individual can choose a council arranged service
- Or the individual can choose a mix of these options for different types of support
Interesting for those of us in other parts of the UK is Option 4, the choice to be able to have an ‘all, some or none of the above’ option depending on what it is you want to happen. This removes some of the the all-or-nothing binary from SDS that still seems to bedevil thinking about personal budgets in England allowing someone to choose what kind of decision making is most appropriate for them.
Listening to the speakers across the day I picked up that while there might be an open field of possibilities once you access a Self Directed Support Budget, you first have to squeeze yourself through a very tight gate with a very stern keeper, one perhaps keen that you stick to the footpath rather than straying off it and upsetting the sheep. To receive an SDS budget a person still needs to pass through an assessment of their needs and, as is always the case it seems, the assessment process is often not properly funded as a separate service. This means that the promised land of choice is often over a sea of complications. I heard someone say that there were less people accessing mental health support directly from having mental health as their primary need and more people with other health needs who were accessing mental health support in addition to support for their mental health needs. The suggestion was that it was easier to claim a personal budget for physical needs than it was to claim one for mental health needs.
This frustration is echoed in Power, Choice and Control, with Stephens summarising: “After support plans have been agreed between service users and practitioners, the plan has to be approved by the local authority. Hamilton et al found that service users experienced this process as confusing and disempowering. Practitioners also reported feeling powerless over these decisions, although sometimes used this as a way of distancing themselves from responsibility for the decisions made.”
As ever the best case for personalisation was made by someone who desperately wants it to work. One of the speakers, herself supported by a personal assistant, made the case for the way that self directed support can turn the key to unlock greater possibilities and opportunities. She spoke about the ways in which she didn’t want a service as something to attend: what she wanted was the addition of services in her everyday life that would augment the situation and remove restrictions imposed by her condition. She spoke of the frustration of knowing what she needed to clear some of the blockages in her life but being offered things only once they had passed through the prism of service delivery. She spoke about the ways that what she wanted might be something very particular; but what she was offered only resembled what she wanted in a very rough way. An example of this might be want to pay a cleaner but ending up with a support worker to support you doing the cleaning yourself. To a service provider this look right, but to a person? Not so much.
For me it’s impossible to discuss personalisation without discussing disruption. Despite being a movement about putting the person with needs at the centre of choosing how to meet those needs, personal budgets or SDS also requires business models different to the ways in which previous forms of support have been provided. The old block grant or contract model could be described as someone somewhere buying a big chunk of something and then offering it to people: like buying a palette of baked beans from the Cash and Carry and then handing them out to whomsoever qualifies for a tin. The creates economies of scale – it’s cheaper to supply lots of the same thing – and makes it easy to plan for the future because you always know how many tins you’ve given away and how many you have left.
In theory, a personal budget is more like going to a shop and perhaps buying beans. Or sending someone else to get you some beans. Or deciding you don’t want beans at all. This means that you can’t just buy a load of beans from from you block grant or contract. You have to think about what else people might want to buy and to work out how you might make it available. It might turn out that people do want beans; but beans made to their own recipe. Or a variety of beans that you can’t get from the Cash and Carry.
Of course, care and support are nothing like beans; but this cuts both ways. People who are worried by personal budgets point out that they may deprive people who don’t meet the threshold for a personal budget having support to access; as the money arriving in the form of block grants and contracts enabled larger organisations to survive and gave the financial security to develop and offer other kinds of support. They would argue that it’s possible to deliver a personalised service within an organisation that previously would have rolled out a more standardised set of services. On the other hand, proponents of personal budgets point out that what is being offered by such block grants and contracts is, at best an approximate match for what people want and need and is designed around the needs and structures of organisations rather than the wishes and needs of people.
As such, SDS and personal budgets present a particular challenge to voluntary sector organisations such as charities who have often relied upon the larger, regular payment of grants and contracts to employ staff, rent or buy premises and to maintain other activities like fundraising or the development of other services. As I’ve said elsewhere at much greater length it’s hard to see how existing mental health orientated organisations will contend with increasing take up of personal budgets without fundamentally changing both what they offer and how they offer it.
But if the larger existing organisations don’t survive, what kind of organisations will come into existence? In England this discussion does not have the prominence of other debates in personalisation about resource allocation, assessment and management of budgets; suggesting that south of the border the discussion remains firmly dominated by those who engineer systems and develop policy rather than those that tailor services to the wishes of those who might choose to use them. The English debate about personal budgets is, perhaps, dominated by the interests of those closest to the current seats of power in health and social care. It’s notable how little heard the people who would actually be involved in creating the new kinds of organisations and services that would meet the needs of people with enduring mental health difficulties as they are now, if indeed those people exist. As was the case in Scotland three years ago, the money is not there to develop a service that people with enduring mental health difficulties might actually want to purchase until enough people have both opted for a personal budget and passed the criteria to receive it. Yet, until there are examples of the kinds of new services that people might opt for and strong and convincing examples of what is possible; people (and professionals) will quite sensibly wait and see. I described this to the audience of the event in 2012 as being like a school disco where everyone clung to the walls waiting for someone else to take to the floor and get the dancing going.
The day in Edinburgh was also concerned with the ways in which peer support, support provided by other people with direct experience of mental health difficulties, and how that could contribute to SDS. A number of the speakers came from organisation based in rural areas; where services and responsibilities were spread out. It struck me that these areas presented far greater learning for the idea of SDS and personal budget service delivery than the examples taken from larger urban organisations.
One of the challenges of service delivery is that services require density of customers or service users to be viable. How many service users they require depends on how much it costs to run the organisation and how much it is reasonable to charge for the service. Traditional, non-personalised, services create density by making things happen in a particular building at a particular time with the expectation that everyone who is interested will come to them, allowing for the economies of scale. Rural areas cannot deliver services in the same way. While the prevalence of mental health difficulty might be exactly the same; there a few people per square mile, meaning that people have to travel far further and, even then, there may not be ‘enough’ people with similar needs to run a viable service on the model of an organisation with standing staff and premises.
The experience of people with mental health difficulties in more rural areas has often been ‘we’d love to provide you with the support or help you need, but we’re sorry that there just aren’t enough people with similar needs and wishes to you to make it viable to run a service. So there isn’t one.’ The ways in which colleagues from such areas have gone about developing services that people need and value actually tells us much more about one of the ways in which personalised services might develop outside of being delivered by organisations trying to convert from block grants and contracts to personalised services where the amount of demand might not demand a full time staff post or a long term premises.
The speakers from rural areas spoke about the ways in which they started small and made use of peers and peer workers to build things from what was available. As I’ve said before, I think micro-provision holds the greatest promise for providing the kinds of specialist services that people with enduring mental health needs who qualify for personal budgets need and want:
“Micro providers, being very small, have a business model that is not based on achieving economies of scale but upon limiting the cost of each transaction. In practice this means delivering a service that is only supposed to have a limited number of clients. In a lot of situations, the needs and desires being met by personalised services will not lend themselves to density. The chances of there being sixteen hundred people in a town of 60,000 people, with long term severe mental health difficulties and who want to take courses in linux coding are slim. The chances that there might initially be ten is possible. It can be guaranteed by finding those ten initial people and setting up the micro-provision to serve them at a price that works for both parties, a process otherwise known as market research.
There is a a kind of virtuous circle in micro-provision in that it can be the opportunity for people with lived experience of mental health difficulty to start small businesses or charities to provide help and support to other people with mental health difficulties.”
Power, Choice and Control suggests that people valued support from peer organisations when it came to managing a personal budget, continuing to see peer services as providing mainly support and fellow feeling. It struck me that some of the experience of the speakers from more rural areas of Scotland suggests a very different role: people with mental health difficulties actually become the providers of services which can be purchased by those who manage to finally achieve a personal budget.
In a national situation where austerity policies are eroding the existing landscape of larger providers, with local authorities being required to make even great cuts to ‘non-essential’ services, it is perhaps the experience of these rural organisations that have the greatest lessons for the ways in which to keep choice viable for SDS and personal budgets in general. I’m led to understand that in the new year Scotland is exploring ways of develop the capacity of user-led mental health organisations and groups to deliver such services.
As I said to a room full of people in Glasgow in 2012: what we need to make personal budgets is good things for people to buy with them and imagination about how to make them work. The measure of them will be whether they make people’s lives better on their own terms; so we require not compliance but cunning, bravery, and to find a way of tasting what a better life might be like. It’s not good enough that people with mental health difficulties are held back for want of being able to find a service that makes their life more them-shaped.
It was evident that Scotland is still finding its way through SDS; but even in a drafty methodist hall in Edinburgh it was clear to me that a conversation about how we can solve problems and make personal budgets work is better than a never-ending discussion about whether we should even try. Scotland hasn’t solved all of the problems; but it might just have a much better idea of what exactly those problems are.
In situations where the needs, desires and situations of people with enduring mental health difficulties have changed remarkably since the setting up of our existing services and service delivery models, it vital that we begin to look at making sure that people can get what they want and need to have the life that they want; need; and, more importantly, deserve.
Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter.