Research Realities: local provision for complex needs

Bob Hudson analyses critical research on out-of-area placements’ efficacy

Title: Commissioning person-centred, cost effective local support for people with learning disabilities (Scie knowledge review 20)

Authors: Eric Emerson and Janet Robertson

Institutions: University of Lancaster

ABSTRACT

Following a spate of scandals about the quality of care for people with learning disabilities placed out of area, the government is seeking to ensure that people are supported locally even where their needs are complex and may require specialist support. This Knowledge Review from the Social Care Institute for Excellence (Scie) draws together the evidence on the effectiveness of out-of-area placements.

OBJECTIVES

The report aims to bring together knowledge from research and practice on the nature and effectiveness of out-of-area placements, along with an exploration of the factors that impede and promote local-based support. It does so in two ways. The first is through a systematic study of existing research in specialist journals about the extent, nature and characteristics of out-of-area placements. This evidence base was relatively small.

Existing research included:

● National data on the scale of out-of-area placements.

● Local studies of out-of-area placements.

● Research involving forensic and secure needs.

● Research on the impact of out-of-area placements for receiving areas.

The authors also undertook a practice survey – a consultation with service users, their families, and the professionals and service managers. This consisted of three elements: an online consultation a series of consultation workshops and three one-day consultation conferences.

Figures on Out-of-Area Placements

The most recent national figures relate to March 2006 when just over 11,000 people aged 18-64 were estimated to have been out of area, but the data was limited to people supported by councils with social services responsibilities – those in some supported living arrangements or funded by the NHS are excluded.

The most striking finding is the extent of local variation – at one end Greenwich exports about 90% of its supported residents at the other Durham places only about 5% externally. In general, the London boroughs are big exporters, while the North-East and Yorkshire & Humberside come in low. Clearly, the push to reduce out-of-area provision will have bigger ­implications in some parts of the country than others.

Findings from the Systematic Review

The authors acknowledge that the evidence base is small and they painstakingly describe each study. The overarching themes are:

● The main groups placed out of area are those with challenging behaviour, autism, mental health needs, complex health needs and forensic needs.

● The individuals concerned are relatively young and will require support for the foreseeable future.

● There is some evidence that people placed out of area may be more able than some who are not, but they display challenging behaviour.

● Placements tend to be made for negative rather than positive reasons, especially placement breakdown and poor local services.

● Most placements are in the independent sector, often in large settings.

● Contact decreases the further (and longer) people are placed away.

● Funding is expensive and limits the possibility of developing better local services.

● “Receiving areas” may have heavy demands placed on them without any prior consultation and involvement.

● People with forensic and secure needs constitute the “hard core” of out-of-area placements.

Findings from the Practice Survey

The practice survey explored issues and concerns that may fail to register on the radar of academic researchers. Much of this section of the report is given over to views on the adverse impact of out-of-area placements – upon the individuals concerned and their families, to receiving areas where they swallow up funding to the exporting areas. The arguments are well known and generally reflect the literature review messages. However, some interesting caveats are also made:

● Out-of-area placements may be the best option for particular individuals at that point in time due to the lack of suitable local support and services.

● Basing definitions of out-of-area placements simply on administrative boundaries is unhelpful – people could be living closer to home than is the case with some “within area” placements.

● Some people may prefer settings away from their community of origin – and the roll-out of personal budgets would allow them to make such a choice more freely.

Finally, this part of the review examines the barriers to more local developments. Almost all the participants supported the thrust of policy on reducing out-of-area placements, but felt progress was impeded by several factors:

● Lack of incentives or weak performance management: It was suggested that existing policies lack teeth and that the out-of-area issue was not being addressed in national performance management systems. This may have been true at the time of the fieldwork but is less true now.

● Policy and regulatory barriers: A range of issues is raised here, including the “congregate” incentives of Supporting People, uncertainty about the nature and impact of continuing healthcare funding and the difficulties of accessing capital funding to develop supported living environments.

● Insufficient investment in long-term commissioning: A significant shortfall was acknowledged in current capacity for adopting a more strategic approach to commissioning services and support. Mapping current and future needs, evaluating costs and outcomes, and developing protocols and other commissioning tools were felt to be under-developed.

● Lack of experience of commissioning person-centred support and risk averse cultures: Some commissioners are said to be unwilling to sign off risk assessments for local placement of people who “challenge”. Out-of-area placements are seen as less risky. Again, personal budgets could be a way to re-visit the balance of risk and responsibility.

ANALYSIS

This review constitutes a timely focus on a complex policy challenge and one that raises fundamental issues of human rights. In recent years many examples of unacceptable practice have emerged in relation to people with complex needs and learning disabilities, notably in NHS settings.

The Mencap report, Death by Indifference, highlighted six tragic examples of institutional discrimination against people with a learning disability, and drew attention to several contributory factors. One common factor across all of the cases was that the individuals had severe or profound learning disabilities, with little or no verbal communication. Subsequent investigations in Cornwall and Sutton and Merton NHS trusts highlighted a correlation between increased levels of impairment and abusive practices, including sexual abuse, physical abuse, deprivation of liberty and institutional practices.

Government policy, both for adults and for children and young people, is now squarely set on reducing the use of expensive and possibly unsuitable out-of-area placements. This will be a popular move for many (though by no means all) service users and their families, but the key message coming out of this review is that such a change would be difficult to accomplish quickly and easily.

The danger is that cash-strapped councils looking to reduce expensive placements make hasty decisions before appropriate local alternatives have been developed.

Two further developments are under way. First, CSCI, the Healthcare Commission and the Mental Health Act Commission will shortly be jointly carrying out a series of reviews to assess how local authorities and primary care trusts commission services and support for people with learning disabilities and complex needs.

Eight sites have been selected for review, along with a further two sites (where the data indicate that commissioning and service delivery are performing better) as a control group. The reviews are currently taking place and a national report will be published in March 2009.

CSCI is also undertaking a special study on the support arrangements for people with multiple and complex needs, including the actual and potential use of personal budgets. The findings will form part of the CSCI annual State of Social Care report to be published in January.

Practitioners’ messages

● Not all users or their families will want to choose local provision.

● The circumstances of each individual will require a personalised rather than a blanket response.

● It is easy to cease funding external placements but harder to create quality local alternatives.

● Personal budgets may provide a solution but only if they are pitched at the right financial level.

● There will still be an important role for professional support in creating the right solutions for individuals.

Bob Hudson is visiting professor of public policy at the School of Applied Social Sciences, University of Durham

• The SCIE review is available on the SCIE website