The impact of the independent living fund

The scheme that paved the way for direct payments programmes is nearly 20 years old. Now Melanie Henwood and Bob Hudson are reviewing the effectiveness of the Independent Living Fund in a modern setting

The development of cash-for-care programmes that allow self-directed care is now regarded as “mission critical” in public services reform. The novelty of direct payments is already being superseded by the In-Control programme and the individual budget pilots, both with enormous implications for the ways in which social care and other services are commissioned and provided.

In the midst of this turbulence it is easy to forget the original cash-for-care programme that started nearly 20 years ago – the Independent Living Fund (ILF). The ILF was established in 1988 and was, particularly in retrospect, a radical and unique model of responding to the support needs of severely disabled people by providing them with a budget for their personal care.

Over the past 18 years other cash-for-care models have developed and, along with the ILF, they provide the foundation for the piloting of individual budgets. It is timely, therefore, to consider how the ILF is integrated within this new policy agenda and what its future role might be.

The ILF was created as a pragmatic and temporary solution to the transitional issues which arose in reforming the supplementary benefit system in the 1980s and replacing it with income support. While the former had included special domestic assistance allowances for severely disabled people living at home, these did not feature in the new system which tried to develop a simplified structure with fewer additional allowances. Some 300 people were affected and faced being worse off as a result. The ILF was established as a discretionary charitable trust to provide financial help for this group of people and for others in the same position to enable them to continue living at home. It was envisaged that this arrangement would be time-limited and would cease in five years with the implementation of the community care reforms in 1993 under which responsibility for the care costs of severely disabled people would pass to local authorities.

This did not happen; the ILF proved popular and successful. Within the first year, 900 applications were received each month and, over the five years, cash awards were made to more than 23,000 disabled people. In 1993 it was decided to establish a further fund. The original ILF (the extension fund) was closed to new applicants and a new ILF (the 1993 fund) was set up. Initial expenditure of £1.1m in 1988-9 has risen to £263.7m in 2006-7 (across both funds). The ILF, in partnership with local authority social services, supports more than 18,000 severely disabled people in the UK each year to live independently in the community.

In addition to the emergence of other new models of cash for care, the changing policy context has also seen a significant shift in ideology. This is evident both in respect of understanding and promotion of the social model of disability in particular and about the core importance of self-determination and independence for service users in general. These ideas have infused recent policy documents, particularly Improving the Life Chances of Disabled People, published by the Prime Minister’s Strategy Unit in 2005, and the green and white papers on adult social care.

The role and contribution of the ILF needs to be considered within this context. Key issues, questions and dilemmas arise in examining the ILF alongside other cash-for-care models. In particular, while the ILF was conceived as a temporary solution to an anomaly in the welfare benefits system, other cash-for-care models have developed in response to these other ideological drivers promoting independent living and self-directed care. How and to what extent the ILF has adapted its approach to this changing climate is a central question.

Some further dimensions that the review will explore include issues concerning partnership, flexibility, resource allocation and engagement with service users. The major partnership relationship of the ILF is with local authorities and there is a need to improve co-ordination in such respects as the fit and coherence of respective assessment processes. This is not simply about avoiding imposing multiple and repetitive assessments on service users, but also raises issues about the place of assessment within a self-directed model of support.

Partnerships with the NHS are a potential issue for the ILF as for other cash-for-care programmes. NHS funds are excluded from these funding models because of the separate legal constitution of health and local authority services and the distinction between NHS services free at the point of delivery and means-tested social care. It is evident that service users fail to distinguish their support needs in such ways and there is at least anecdotal evidence of the use of funds to pay for health care support. There is increasing pressure to extend cash-for-care models to at least some aspects of health care funding and this is likely to be a significant element in discussions about the future role of the ILF.

The developing policy emphasis on personalised support and choice and control attach a premium to programmes that can be delivered flexibly and allow maximum discretion and autonomy for the service user. There are potential tensions between such objectives and the need to ensure audit trails and accountability in the use of taxpayers’ money. How these tensions are resolved and how they impact on the experience of service users are also important questions.

Other advantages of cash-for-care models can be identified in the greater transparency of resource allocation that they can offer. The piloting of the In-Control model, for example, developed a resource allocation system (RAS) to allow the ready identification of the funding available to eligible applicants. This process also separates the two functions of needs assessment and resource allocation.

Separation allows for the development of new brokerage and navigator roles to support people in identifying their needs and obtaining the resources to which they are entitled. The implications of this are being addressed across the funding streams within the developing individual budgets pilots, but this also raises significant questions for the role of the ILF simply as a conduit for money or for something more ambitious in promoting person-centred planning.

The review of the ILF provides a chance to explore these and other issues in depth. We will undertake parallel strands of consultation to allow maximum engagement with ILF stakeholders and to allow us to develop our understanding of the ILF within the new policy context. A call for evidence has already been made. It is also possible to e-mail comments to the address below. The review will be complete by January with the aim of promoting a rational and coherent programme of support across the cash-for-care field.

A series of public meetings will be held over the summer to gather evidence as part of the consultation. For more information on these, e-mail ILFReview@dwp.gsi.gov.uk 

Melanie Henwood is an independent health and social care analyst with particular interests in community care, older people and their carers.
Bob Hudson is visiting professor of partnership studies at the school of applied social sciences, University of Durham.

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
The Independent Living Fund constituted the first cash-for-care programme in 1988 and paved the way for subsequent developments, such as direct payments and individual budgets. An external review of the ILF has been commissioned by the Department for Work and Pensions from independent consultants Melanie Henwood and Bob Hudson to address whether a non-departmental public body such as the ILF continues to be the best way to deliver the service and, if so, how delivery of those services can be improved.

Further information
Cabinet Office, Non Departmental Public Bodies: A Guide for Departments, 2004
Cabinet Office, Improving the Life Chances of Disabled People, Prime Minister’s Strategy Unit, 2005
Department of Work and Pensions, Independent Living Funds: Quinquennial Review 2001, 2001