The long slow march to self-directed support

This week, the Scottish Government announced £700,000 of grants for organisations to provide advice and information to disabled and older people and their families, with the aim of enabling more individuals to take charge of their own services and support.

The concept of self-directed support has been around for a long time.  It first appeared in the Social Work (Scotland) Act 1968, which allowed for payments to be made directly to a “person in need”.  The Health and Community Care (Scotland) Act 2002 modernised the provisions with a view to expanding the availability of direct payments to a wider group of people, including children, and this has been developed further in the Self-Directed Support Strategy and forthcoming bill, which effectively aim to create a presumption in favour of self-directed support.

This creates the potential to effect a huge change in how community care is provided.  Largely, social care has been done to people.  Planned, designed and delivered by local authorities and organisations they contract with, disabled children and adults, and older people would be assessed on their level of need, and if it was high enough, they would be matched up with an existing service.  Everyone has acknowledged the need to make services and support more individualised and over the years, social care has shifted from block to individualised purchasing.  Each individual’s needs and preferences are now taken into account and a package of care and services put together to match those needs.

At least, that’s the theory.  The practice has been somewhat different, with needs-led services constrained by fixed budgets and many families left frustrated by the inflexibility of provision.  Local authorities and health boards have devised ever more ingenious methods to ration services – in order to stretch resources as far as possible – and really, only those with the highest needs get.  At the same time, there has been stubborn resistance to the development of direct payments and alternative self-directed support packages, which is why successive Scottish Executives and Governments have found themselves revisiting the issue and expanding and toughening the legislation.

The reasons for the very slow march to self-directed support are complex.  Despite the best efforts of many, the numbers receiving direct payments has increased only incrementally and some of that growth is accounted for an increase in over 65s taking up direct payments, meaning fewer under 65s have received them.  A demographic switch then.

The amount spent overall and on individual packages has increased, which reinforces the view that only those with the highest needs qualify.  Moreover, local authorities allocate a budget to direct payments:  when it is spent out, that’s it, which is never how the policy was intended to operate.

There are also widespread local variations:  some councils are much more enthusiastic about the policy than others.  How else to explain the far lower numbers in Glasgow with direct payments than in Edinburgh?  Or that fewer people in East Ayrshire are on direct payments than in Dumfries and Galloway, despite them being similar sized authorities?

Generally, the improvements in recent years are welcome – there are now more people taking charge of their own care and support, enabling them to live as independent a life as possible.  Thus, some people are supported to work, others to enjoy leisure activities that fall out with traditional social care provision.  Direct payments enable many families to stay together, providing sufficient, additional support and respite to make the burden of care manageable while importantly, giving the person with care needs some level of independence from their family members.   This is a very good thing.

But the numbers – compared to the population of disabled and older people as a whole – are low.  There is anything between 11 and 30+000 disabled children in Scotland with some level of care needs, yet only 584 children under 17 receive direct payments.  There are at least 300,000 people with a physical disability of working age, yet only about 2400 adults receiving direct payments.  This includes over 1000 people who have learning disabilities, yet there are at least 23,000 adults with learning disabilities “known to local authorities”.

Whichever way you look at it, only a tiny fraction of those people who could manage their own budgets and arrange their own support and care are doing so.  Money plays a role: the needs-based rationing of cash-limited budgets clearly limits availability but so too does the types of support on offer.  To date, the only real option has been direct payments which involves a serious amount of commitment and responsibility.  Not everyone wants that, and hopefully the availability of other models through the strategy and forthcoming legislation will expand the take up of self-directed support.

But really, it is about power and control.  The real block has been the attitude and approach of local authorities, professionals and even, trade unions.   The unions, certainly in the early days, viewed self-directed support with suspicion, as a form of privatisation by the back door, and tried to frustrate the extension of the policy and practice whenever possible – without such action being official, of course.

Moreover, local authorities – many, not all – have tried to make it hard for people to take up direct payments.  There is a rigorous, lengthy assessment procedure; individuals with direct payments have to make detailed, overly frequent accounting to the self-styled guardians of the public purse, and they have to account for every penny; some councils limit what direct payments can be spent on or insist that individuals seek approval for their care provider or if they want to change how they spend the money. Worst of all have been the attitudes of some professionals over the years: some people cannot be trusted to spend the money wisely, apparently.

While the ongoing commitment of the Scottish Government is welcome, and this grant funding will make a difference, the solution that will see a wholesale shift away from current forms of support to self-directed support is bound up in the wider issue of public sector reform.  As well as legislation, strategy and funding, we also need cultural and behavioural change to ensure power and control shifts away from agencies and professionals to individuals and families.

3 thoughts on “The long slow march to self-directed support

  1. I know I’m late to this, but the situation for people with mental health problems is even worse: just 339 are receiving self-directed support. There’s still a lot of misunderstanding and even fear among people receiving social care that this will end up in them having to become employers when they don’t want to, or will just be used as an excuse to take money from them. I think the concept of self-directed support is brilliant and potentially very radical (in a good way) but I am not convinced that the appetite exists to do it properly.

  2. I know quite a lot about disability benefits, having two relatives who are disabled.

    The key issue that requires reform is the assessment process. It is so complex and lengthy, primaryily due to abuse of the system.

    As to direct payments, disabled students already get their grants paid directly to them, normally for medical helpers and computer consumables. There shouldn’t be any great issue in changing the main system.

    • the assessment procedure is the way it is because of perceived abuse of the system ie able-bodied in particular presuming lots of folk are on the make and going to make false claims. When the UK government’s own statistics show that fraud in DLA is low and the biggest issue is underclaim and also first time refusal of claims that are then overturned on appeal.

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