Get up, stand up, stand up for your right: why we need concerted action to improve direct payments
When thinking about the state of direct payments recently one of Bob Marley’s songs came to mind: Get up, stand up, stand up for your right, (lyrics by the great man and fellow Wailer, Peter Tosh). That’s how I feel about direct payments right now. They are in trouble and need attention.
I have had a direct payment from my council for nearly twenty years and, although it doesn’t work perfectly, it does enable me to lead a full and contributing life, in the way I choose, with the control I want. So, what’s your problem I hear you say? My answer to that question is that not enough people are benefitting from this way of self-directing their own care and support.
Direct payments have existed in legal form for over 25 years. They came about with the growth of the independent living movement from the 1970s onwards and the pioneering struggles of disabled people like John Evans. These pioneers fought for the right not to be cared for in segregated institutions, or rely on limited one size fits all services in the community, however well-meaning or run they were. The innovation that was personal assistance, with support controlled and funded directly by the person was a big key to unlocking the narrow lives that many disabled people experienced at that time.
The Community Care (Direct Payments) Act 1996 allowed local authorities for the first time to give ‘cash for care’ and subsequent policy, and legislation expanded entitlement, so by the time of the Care Act 2014, they were the ’government’s preferred mechanism for personalised care and support... [as they] provide independence, choice and control by enabling people to commission their own care and support in order to meet their eligible needs’.¹
Despite these developments, the statistics show the number of people with direct payments has been steadily falling over the last few years². No-one is saying that they are right for everyone, but I need some pretty strong convincing that we have reached a natural ceiling. And it is not just a numbers question, as the quality of those direct payments is also questionable, with too many people experiencing unreasonable restriction on their use, which I’ll come to later.
There is no single factor that can explain this trend. It seems more likely to have come about as a result of the combined influence of various elements; not so much a perfect storm, more a case of a constant strong wind that is knocking the intended policy off course.
Firstly, a worrying aspect of much current day to day practice is the failure to adopt a rights-based approach to care and support. In an environment of cash strapped councils, practitioners are often expected to act as gatekeepers who limit access to support by determining eligibility largely based on deciding whether someone needs personal care, rather than applying the much wider definition of wellbeing in the Care Act. This means that practice is too often too far away from upholding the fundamental concept of independent living, in line with the UN Convention of the Rights of People with Disabilities.
Secondly, I think we sometimes confuse the policy of personalisation with taking a direct payment; that is if a person takes a direct payment then somehow that is personalisation done and dusted, and by implication it need not apply to the same extent to those receiving other forms of support, for example, when living in a care home.
Both in law and policy, personalisation is meant to be a universal approach, a golden thread that runs through all needs and care settings, as demonstrated in TLAP’s Making it Real. A failure to locate direct payments within the overall context of personalisation can be compounded by a tendency to overlook that all forms of personal budget are mechanisms which should be deployed to uphold the principles and process of self-directed support and person-centred care.
Whilst direct payments rightly provide the highest degree of individual choice and control, individual service funds and council managed budgets should also enable people to lead the best lives they can. Without this fundamental understanding there is a risk of direct payments being viewed not as a strand of personalisation, but personalisation itself; for the few and not everyone.
Thirdly, from the work that TLAP has done in this area over a long period of time we know the process for choosing to take a direct payment can often be onerous and off putting. Demand is further constrained if the expectation is set that direct payments can only be spent on personal assistance. Whilst that is an entirely legitimate use of a direct payment, it is not the only one.
It is often said that many older people don’t want to take on the responsibility of becoming an employer or self-direct their care and support. Leaving aside the distinct possibility that if the process for taking and managing a direct payment was made easier with the availability of good quality support, the numbers of older people opting to take a direct payment would quite likely rise significantly, we also need to take a broader view of what a direct payment can be used for. It is crucial that we return to the original principle of the permissive approach envisaged in the Care Act and guidance, whereby “the direct payment is designed to be used flexibly and innovatively and there should be no unreasonable restriction placed on the use of the payment, as long as it is being used to meet eligible care and support needs.” ³
Through TLAP’s long standing involvement in direct payments we have built up a body of knowledge, insight and experience on what hinders and helps direct payments which is documented in a series of reports (two produced jointly with the Local Government Association).
One vital ingredient is the need for committed and sustained leadership. That’s why we are planning a direct payments summit to bring together central and local government, together with people who hold direct payments and their allies, to re-commit to increasing the quantity and improving the quality of direct payments.
The summit will focus on the action required to make tangible progress to improve the delivery of direct payments. The overarching outcome will be to agree a shared commitment to underpin and guide action across the care and support sector over the next two years so that more people who draw on care and support have better opportunities to be in control of their care and support, as a right not a privilege. You will hear from a range of people with lived experience setting out their views on why direct payments need targeted attention, as part of a concerted overall effort to reform and improve social care. We are standing up for our right and hope that others will stand and act with us.
To learn more about direct payments and check out our extensive resources on the subject, visit TLAP’s Direct Payments page (opens new window).