Independent living: There are too many confusing schemes, says Bob Hudson and Melanie Henwood

Disabled people are finding that the road to greater control over their lives is paved with confusing and complex schemes, write Bob Hudson and Melanie Henwood

The growing political significance of cash for care programmes for disabled people is leading to a greater complexity of  policies.

Service users may obtain cash funding from several sources (direct payments, Independent Living Fund, individual budget pilots) for a range of services (social care, housing support, leisure, access to work, aids and adaptations), each with a different set of eligibility criteria, and a different mix of costs and benefits. The potential for confusion and duplication is considerable, and the case for rationalisation is strong.

There are five recurring issues that need to be addressed:

National versus local
To what extent is it reasonable to expect central government to take responsibility for defining equity in social care? Should there be a national framework for independent living or is it acceptable to have 150 different schemes?

The trend in the centralised health care system is towards eradicating the postcode lottery but in the case of local social care services there is more acceptance of variations in provision from area to area consistent with principles of local democracy and accountability.

Among the cash for care programmes only the Independent Living Fund (ILF) has a UK-wide consistency of rules and regulations, although even here there is considerable variation in takeup rates across the country. Direct payments have been plagued by uneven availability and take-up, and the danger with individual budgets is that we again end up with schemes that differ widely across England depending upon the commitment of the local partners. Not only is this inequitable, but it causes problems of lack of portability when disabled people leave one local area for another.

Variations and overlaps
Programmes vary in the way they determine eligibility, how they assess service users and make payments, even though they are often dealing with the same individuals. For example, the ILF does not accept claims from people aged over 65, whereas there is now no upper age limit for direct payments; ILF money tends to be paid in arrears whereas direct payments are paid up front – which can result in cash-flow problems for disabled people needing to pay their  personal assistants; ILF does not take earnings into account, direct payments generally do. The case for some rationalisation of eligibility and assessment appears to be compelling.

Discretion and flexibility
There is a premium on programmes that can be delivered with the maximum degree of discretion afforded to the service user, but this must be balanced by measures to ensure public money is accounted for. Service users generally want greater flexibility in using cash payments than they typically receive, often feeling unable to spend money in ways that they believe will best support their care. One study of direct payments and older people(1) found that they did not receive funding for social activities, and could only engage in activities outside their home by being creative in their use of the funding provided.  Similar issues arise with ILF rules that specify funding can be used only for “personal care and domestic assistance”, rather than other activities critical to living an active and fulfilling life. We need to discover the extent to which individual budgets will encourage greater flexibility in the use of payments.

Support for life planning
A key issue with cash for care programmes is whether they are simply channels for cash payments, or they can also take some responsibility for supporting people with the ways that payment is used, and actively promoting independent living.

The main issue here is the role of personal assistants. A user of cash payments becomes the employer of their care staff, and this responsibility can be formidable. Studies into barriers to take-up of direct payments across the UK(2) have all found that difficulties in finding personal assistants and anxieties about organising their employment have been high on recipients’ lists of challenges.

It is in these circumstances that the case has been made for ensuring that disabled people receive help in making best use of their cash payment – support for life planning.

A new approach to assessment
The ways in which individuals are assessed for cash for care programmes, and indeed for other care services, are complex, and go to the heart of the debate on user empowerment.

While cash payments are only a mechanism for providing social care,(3) it is the assessment process that is the key decision point for determining how much social care will be provided to a claimant.

It is therefore important to separate the assessment process (a purchasing decision) from the various methods that are available or could be developed to provide that care.

Of particular relevance here is the concept of self-determination. Ideas about the individual’s capacity to formulate and act on plans and purposes that are self-determined have become an explicit goal of the disability movement. Eligibility thresholds are found in almost all schemes and given legitimate limitations on available resources it is not feasible to remove them entirely, but organisations of disabled people have argued that within this constraint, outcome-focused assessments based on selfassessment of needs should replace bureaucratic and intrusive investigations.(4)

Whereas traditional “needs based” assessments rely substantially on professionals to define the problems and level of service, outcome-focused assessments seek to involve service users in identifying their personal outcomes with the assistance of services or support. In a system of self-determined, or at least self-directed, support, the grounds for allocating resources must be transparent and people must know the available funding (their individual budget) before they begin to plan how to use it.

The most practical proposal for reconciling self-determined needs with the inescapability of rationing is the notion of a resource allocation system along the lines developed through the In Control programme (itself the predecessor of individual budgets).

The five dilemmas identified here do not constitute all of the issues that need to be resolved if cash for care programmes are to develop more systematically, but they do raise questions that go to the heart of the way social care and related services are determined. 

Debate is well under way, but solutions may take a little longer. Crucial contributions towards informing this understanding should emerge from the review of the ILF that is now under way, and also from the wider review of independent living being undertaken for the Office of Disability Issues.
 
BOB HUDSON is visiting professor of partnership studies at the school of applied social sciences, University of Durham.
MELANIE HENWOOD is an independent health and social care analyst with particular interests in community care, older people and their carers.

TRAINING AND LEARNING
The author has provided questions about  this article to guide discussion in teams. These can be viewed at www.communitycare.co.uk/prtl and individuals’ learning from the discussion can be registered on a free, password-protected training log held on the site. This is a service from Community Care for all GSCC-registered professionals.

ABSTRACT
Cash payments to individuals to purchase their own care are now a key element of government policy, but various programmes have grown in an uncoordinated
manner. There is a need for greater coherence across the schemes and this article identifies several key dilemmas that will need to be addressed in any
process of rationalisation.

REFERENCES
(1) H Clark, H Gough, A Mcfarlane, It Pays Dividends: Direct payments and Older People, The Policy Press, 2004
(2) T Stainton, S Boyce, “I Have Got My Life Back: users’ experience of Direct Payments”, Disability and Society, 19(5), pp443-54, 2004
(3) J Lyon, “A systems approach to direct payments: a response to friend or foe? Towards a critical assessment of direct payments”, Critical Social Policy, 25(2), pp240-252, 2005
(4) D Robbins, Choice, Control and Individual Budgets: Emerging Themes, Social Care Institute for Excellence, 2006

This article appeared in the 9 November issue under the headline “Path to Independence?”