Personalisation and self-directed support: In Control findings

Title: A report on In Control’s Second Phase: Evaluation and learning 2005-7

Authors: Professor Chris Hatton, John Waters, Simon Duffy, Jonathan Senker, Nic Crosby, Carl Poll, Andrew Tyson, John O’Brien, David Towell

Abstract

This report is in two parts. The first – and shortest – section reports on the second phase of In Control’s development based on the experience of almost 200 people. The remainder of the document comprises a series of informative and considered essays on different aspects of self-directed support including economics support planning and brokerage children and young people community commissioning and provision, and the role of In Control.

Findings

At the time of going to press, publication of the full analysis of the independent evaluation of the individual budgets (IB) pilots is still awaited. In the absence of such data, there is an increasingly critical edge to comment from some quarters arguing that policy is proceeding without an evidence base. This is incorrect. While the IB pilot findings will be of central importance in influencing the implementation of the Putting People First, they do not represent the totality of evidence that is currently available on self-directed support or personal budgets. Indeed, the approach that was adopted in the IB pilots drew substantially from the model of self-directed support developed by In Control, which has continued to expand, and has been the focus of evaluation.

In many ways the In Control evaluation provides a contrast to the style of the IB evaluation, not least because it has been designed from the outset to provide a low-cost (and minimally invasive) methodology for routine monitoring. The project describes itself essentially as ‘an information gathering exercise’ which has captured the views of people (or those close to them) who have experienced self-directed support.

The number of local authorities who have signed up to In Control continues to grow (and recent figures indicate 107 councils are members). The numbers of people utilising a personal budget have also grown rapidly in the last two years from just 414 to 3,871. According to In Control, people are deemed to be in receipt of a personal budget if they (or their advocate) know:

● the amount of money available to meet their needs and the outcomes to be achieved with that budget, and

● that they or their advocate has been given control over the money to spend on things, in ways and at times that are right for them.

All local councils who had informed In Control that they were allocating personal budgets defined in this way were invited to take part in the evaluation, and interviews took place with 196 people using self-directed support in 17 local authorities across England (sometimes with assistance from others). It is acknowledged by the authors that the sample “is not a complete or necessarily representative sample of people using self-directed support in England.” The variation in numbers of people using self-directed support across authorities confirms that developments are still at an early stage, but are further advanced in some parts of the country.

As with the previous report of the first phase of In Control (which reported findings for 60 people across six local authorities), participants were asked about their experience and to judge whether their lives had improved, stayed the same, or got worse, in respect of a number of dimensions.

More than half (58%) of the people who responded had learning disabilities, while 20% were people with physical disabilities and 13% were older people (with smaller proportions of other user groups also involved). Most people (64%) had been using self-directed support for less than six months. People with learning disabilities were more likely to have longer experience (reflecting the origins of self-directed support in working with this client group).

Almost everyone (96%) reported that they had received help in planning how they spent their budget, and for almost half (46%) this came from friends and family. Almost one in five people (18%) had help from a person who was paid to give this planning support, and people using such help were more likely to be people with learning disabilities. Almost three-quarters (71%) of people also had help from a social worker, but people with learning disabilities were less likely to use such help than people with physical disabilities or older people. The important contribution of social workers in helping people to plan their support underlines the ongoing role that social workers can play within the new world of personalisation and self-directed support.

Most people (97%) reported that they felt they had control over how their personal budget was spent, and 91% indicated that they understood what they wanted to achieve through their budget. A very high proportion (82%) reported that they had changed the nature of their support since using a personal budget compared with their previous experience of social care. This was consistent across client groups, and did not vary according to how long people had been using self-directed support.

The evaluation questionnaire asked people about outcomes in their general health and well-being spending time with people they liked quality of life taking part in and contributing to the community choice and control feeling safe and secure at home personal dignity, and economic well-being. Despite some limitations in the data (which are fully acknowledged by the authors), some “useful messages” are identified.

The evidence on outcomes indicated very large majorities reporting improvements in their lives since using self-directed support. The authors conclude the findings are “encouraging” the improvements reported by the largest proportion of people were those concerned with quality of life since using self-directed support (76%), improved experience of choice and control (72%), and improved community participation (64%). It is clear that the longer term impact of using self-directed support needs to be monitored. Any evaluation needs also to balance the desire for more detailed and sophisticated information against the importance of ensuring that data can be easily collected and monitored.

Analysis

The remainder of the report contains equally useful and informative findings. Chapter 4 (by Nic Crosby) is of particular interest because it reports on developments in self-directed support for children and families. While much of the experience to date (and all of the IB pilot activity) has been with self-directed support for adults, it is clear that the model has enormous potential in children’s services.

Additional pilot schemes for families with disabled children are being supported by the Department for Children, Schools and Families, beginning this year and building on the recommendations of the 2007 Treasury review of services for disabled children (Aiming High for Disabled Children: Better Support for Families). Several initiatives are already under way, particularly in supporting children and young people in transition to adult services. This work – led by Dynamite (an In Control member) – has used the self-directed support model and Resource Allocation System (RAS), and applied it to the five outcome measures specified in Every Child Matters. A new stream of work (Taking Control) is also being developed by In Control to establish self-directed support pathways for children and young people.

Section 2 begins with an exploration by Simon Duffy (chief executive of In Control) of the scope for extending the model of self-directed support across the social care system. The section ends seven chapters later with reflections offered by John O’Brien and David Towell. These names will be familiar to anyone who knows the literature on supporting people with learning disabilities, and both have been key figures both in the UK and the US for many years.

Critical friends

It is particularly important that the voices of “critical friends” such as these are also heard in the debate around self-directed support. It is becoming increasingly apparent that In Control can produce some extreme reactions among many commentators. Like Marmite, apparently, you either love it or hate it, with little room for a middle way. Supporters of In Control will point to the transformational impact that self-directed support has had on the lives of people who use personal budgets. Its opponents tend to object to the evangelical fervour with which it often makes its case, and to criticise the terminology that In Control has adopted in order to convey the essence of the new model of support. The vitriol expressed by some of those who oppose In Control is hard to understand the organisation is not staffed by snake-oil salespeople, but by individuals who have emphasised from the outset their commitment to underlying principles which value people as individuals and extol their rights to full citizenship. As O’Brien and Towell remark: “In Control’s effort to reform social care by implementing self-directed support rests on two footings: a careful review of what has worked to improve the life chances of people with disabilities and a well developed moral argument that systems should actively promote the conditions of citizenship rather than inhibiting them” (p125).

If some people are turned off the In Control model because the unabashed quasi-religious enthusiasm of its advocates produces a slight queasiness, others have gone on the offensive on the basis of a misplaced sense that the ideas of self-directed support have somehow been hijacked or misappropriated from the service user movement. It is all the more important therefore that the report contains an appendix setting out a joint statement from In Control and the National Centre for Independent Living (NCIL) which unequivocally presents a jointly held view that:

● The goal for disabled people, whatever their age or impairment, is independent living – to have choice and control in how support needs are met

● Self-directed support is the route to achieving independent living.

Terminology clarification

The joint statement acknowledges that terminology is often used with different meanings which can lead to confusion and misunderstanding. The preference in the statement is for the term “self-directed support” rather than that of “personalisation” because the latter is viewed as a devalued currency associated simply with commercial consumer choice. By contrast, self-directed support is about disabled people exercising their rights to determine their own lives with the clear goal of achieving Independent Living” (p142). The development of self-directed support is far too important to allow it to be undermined by semantic squabbles, and as the joint statement makes clear, systems of self-directed support (whether through direct payments, In Control or the pilot individual budgets) “all have the same intended outcomes” and “it follows that these systems are not opposed to one another.”

At the same time, people who are new to the world of self-directed support need also to learn from the considerable experience with Direct Payments, and to recognise in particular that “such support is more likely to be successful if it is provided by organisations controlled by disabled people or people who use social care services. This is because these organisations are able to offer peer support – support provided by people who may have had similar experiences and have practical ideas about what does and does not work” (p143).

There is no simple how-to-do-it guide for those seeking to develop self-directed support, but it is essential that development is informed by shared knowledge and experience generated by people with disabilities (and user-led organisations), and informed by the emerging research evidence. This volume from In Control offers insights to both worlds and is essential material for anyone trying to address the demands of Putting People First and the transformation requirements on all councils to rapidly engage with the new agenda.

Melanie Henwood is a health and social care consultant

Resources

● Aiming High for Disabled Children: Better Support for Families

● Putting People First: a Shared Vision and Commitment to the Transformation of Adult Social Care