Direct payments are one of the signature achievements of the British independent living movement. The basic – yet seemingly still radical – idea was that people should have a right to cash in lieu of commissioned services, permitting people to commission and direct their own support, whether employing personal assistants, or creatively and imaginatively using the money to meet our life goals and needs in different ways. They were conceived to restore power to people who draw on support to be the author of their own lives and to participate fully in society.
The Direct Payments Act 1996 was born out of the same movements for change that saw the first steps towards outlawing disability discrimination and the accelerated closure of long-stay hospitals for people with learning disabilities or mental health problems. Over the following decade, a succession of policy and legislative developments were animated by the idea that disabled people should no longer be treated as objects of care or charity, but as equal citizens. As part of this broader shift, direct payments helped to transform thousands of people’s lives.
In 2005, the Prime Minister’s Strategy Unit published its report on improving the life chances of disabled people. It committed to building on direct payments, by expanding the range of ways people could exercise choice and control using an ‘individual budget’, and by growing the local support systems that evidence had shown influenced success, including centres for independent living. In 2007, ‘Putting People First’ committed £500 million to roll out ‘personal budgets’, while the Office of Disability Issues piloted the ‘right to control’ which would permit people to integrate the funding they were allocated from different parts of government into one, person-centered budget. Meanwhile, Personal Health Budgets began to extend the principle to people drawing on Continuing Health Care funding.
The ideas of the disability rights movement had found currency in a wider re-imagining of public services. As Charles Leadbeater put it in a 2005 pamphlet for Demos:
‘In this model the state does not act upon society; it does not provide a service. Instead, the state creates a platform or an environment in which people take decisions about their lives in a different way. This is bottom-up, mass social innovation, enabled by the state…. the users are co-producers of the good in question. They are active participants in the process – deciding to manage their lives in a different way – rather than dependent users’
But then came austerity, which ate away not only at the overall envelope of resources allocated to support, and the generosity of individual budgets, but at the power shift that so-called ‘self-directed support’ was supposed to represent, and the wider public service reform agenda being imagined by Leadbetter and others.
Despite the Care Act 2014 reaffirming the principles of choice and control and putting personal budgets on the statute book, the number of people opting for a direct payment has since flatlined. Meanwhile, people who continue to use them, while not wishing to give them up, report increasing control and scrutiny by councils including via the routine use of pre-payment cards and apps, a lack of flexibility about how they may be used, burdensome red-tape and real challenges hiring and retaining staff.
The ‘people power’ that first animated the idea of direct payments is at risk of being extinguished and should that not be rectified it is hard not to envisage direct payments facing only further decline in popularity.
Can we rediscover the vision, politics, principles and energy that led to direct payments? Can we learn from almost 30 years of practice what’s worked and what’s got in the way? What are the broader movements for people-power than we might find solidarity with? Can we come up with new vehicles for choice and control, especially using the digital technologies that were not available before? And what could central government do to these ends? Here are some ideas….
First of all, we need a fresh story. Despite evidence to the contrary, Social Care Future’s public audience research found that the public gets a bit freaked out if we jump straight in and talk about ‘direct payments’, immediately raising concerns about the risk of fraud or poor spending decisions. But if you start with the principle – choice and control over support and life, and give examples of people exercising that control in interesting, persuasive, common sense ways, then people strongly support the idea. So the communication of any flagship policy in this space needs to centre on values and outcomes, not the mechanism: on people having the power to live in the place they call home, with the people and things they love, doing what matters to them, as an active member of their community. That framing has already found common currency with others pursuing citizen and community power, offering opportunities to revive interest in the idea. It will also help with the policy and legislative changes proposed below, which extend beyond the c’s of choice and control to include convenience, confidence, and creativity.
Convenience: the burden and complexity of taking on direct payments shouldn’t ever outweigh their benefits. Local authorities should be expected and supported to keep monitoring and red-tape to an absolute minimum (and this could be the subject of legislation or regulation – see under ‘creativity’ below). Local community organisations do and can help people to manage direct payments, but have often been starved of funding. They should be invested in (see under ‘confidence’ below). Digital technology can also help here, keeping track of the money and automatically producing necessary returns, as well as managing PA schedules, payments and so on, but it must be in people’s hands, not provide a way for councils to exert greater control over people. Government could stimulate and support innovation in this space through financial and other support to start-ups such as In Charge or 24/7 who are developing such tech, many of which are small-scale community enterprises.
Confidence: we know that historically direct payments have enjoyed greater take up and impact where people were able to connect with one another and with expert support via local user-led organisations or networks such as Partners in Policy-making. Such organisations gave people confidence, ideas, and inspiration, were there when people faced challenges, and helped negotiate with local councils. As mentioned above, the 2005 report from the Number 10 Strategy Unit proposed that such organisations would be supported in every local council area, but this never came to fruition. A network of local ‘access to living centres’ would undoubtedly make a huge difference, unlocking huge energy and resources, for relatively low investment. Again, this could be supplemented by harnessing digital platforms via which people can share advice, intel, tips, and hacks. With the support of the Health Foundations Tech for Better Care programme, In Control has been working with Care City to co-produce a digital platform for mutual support called &Thrive, acting as a ‘Pinterest for self directed support’ to inspire and encourage creativity, while connecting people with peer coaches and mentors and a broader community.
Creativity – direct payments are an opportunity to unleash creativity and innovation, and to harness and connect together resources beyond the control of government via which people can pursue their life goals and maintain their wellbeing. This demands that imagination and creativity are celebrated and optimum flexibility is the norm. For example, I recently heard about young women who acted, willingly, as an unpaid carer in support of her brother who has autism. She aspired to be a counsellor and had begun a training course. However, they did not have independent means of transport and the brother found public transport too anxiety-inducing. He and she had become very isolated as a result, his mental health had deteriorated and his sister was struggling to support him. Working with the young woman, the council identified that driving lessons would be a solution and used a direct payment to pay for them. She is now able to take her brother places and get out and about herself and reports that both she and her brother’s mental wellbeing has improved immeasurably. Meanwhile, the council has averted a potential breakdown of support and cost of long-term care. Another example shared with me involved a woman in her 80s who had been assessed as eligible for daycare, but really disliked the traditional day centres on offer. It was established that she had a great love of horses and so a direct payment was used to support her to go and help out at her local stables a few times a week instead. Too many councils are standing in the way of such creativity, wasting the scarce public resources they have control over while failing to unlock the abundant resources and people-powered change we need to face the future with confidence. Stronger rights to choice and control, including strict tests of proportionality concerning any restrictions placed on direct payments, which in my view should relate only to legality and whether their use reflects broadly why a person has cause to draw on support, would help. It makes little sense to me that, while people face needlessly complex assessments and reassessments to assess their eligibility for benefits like Personal Independence Payment or Attendance Allowance, people are then trusted to spend the money without any scrutiny, yet where people are using direct payments they are forced to account for every penny spent. Why the difference? And how much scarce public money is being wasted doing so?
Finally something not beginning with C: workforce, though we might say we need to cultivate one. The workforce of self-directed support is not the same as the workforce of traditional social care. There is a real danger that this is overlooked. This is an opportunity, just as green jobs are an opportunity in the face of climate change, to imagine and cultivate lots of exciting new roles in a new ecosystem of self-directed support, from personal assistants to self-advocates, navigators to brokers, local area coordinators to circles facilitators, digital technology tailors to product designers. The skills mix here is also very different from that being imagined for the traditional care workforce. Unlike that debate which, with its focus on professionalisation and registers seems focused on building walls, a workforce strategy for self-directed support can be about building bridges, inviting people with useful skills drawn from all parts of society and the economy to be part of a movement for people-powered change.
Of course, I can’t fail to acknowledge the most important ‘c’ of all…. cash. Without greater investment in the lives of people with cause to draw on care or support insufficient allocation of budgets will mean people will increasingly struggle to exercise choice and control, no matter how much the money is in their hands.
But in the meantime, I believe we can unlock and use our resources to far better effect if we begin to make progress in the areas outlined above.
These are just a few ideas to get this discussion going. What are yours?
