Elsevier

Research in Developmental Disabilities

Volume 23, Issue 5, September–October 2002, Pages 342-352
Research in Developmental Disabilities

Engagement in meaningful activity and “active support” of people with intellectual disabilities in residential care

https://doi.org/10.1016/S0891-4222(02)00135-XGet rights and content

Abstract

Forty-nine adults with learning disabilities living in 13 small staffed homes in England were studied as part of larger projects in 1997 and again in 2000. A pre-test/post-test comparison group design was used to assess differences in staff implementation of “active support,” service user engagement in meaningful activities and adaptive behaviour. Homes which adopted active support showed significantly increased engagement in meaningful activity and adaptive behaviour between 1997 and 2000. A comparison group showed no significant change.

Introduction

As Bellamy, Newton, LeBaron, and Horner (1990) have argued, the purpose of services for people with intellectual disabilities is to improve people’s lives. Not just to provide richer and more stimulating environments (improve service capacity), nor to increase scores on, for example, measures of individual development (improve individual progress), but to translate these changes into improvement in how people live their lives day by day. Unfortunately, there is considerable evidence that the developmental gains commonly reported after transfer from institutions to homes in the community (Cambridge, Hayes, Knapp, Gould, & Fenyo, 1994; Conroy, 1996; Conroy, Efthimiou, & Lemanowicz, 1982) have not always been matched by improvements in the extent to which residents take part in everyday activities. In many community services, as in institutions, people with intellectual disabilities spend large amounts of time literally doing nothing (Bratt & Johnson, 1988, Emerson & Hatton, 1996, Mansell, 1996).

Inactivity, boredom and isolation in residential care of people with intellectual disabilities substantially reflects the performance of staff (Landesman-Dwyer, Sackett, & Kleinman, 1980; Rice & Rosen, 1991). Staff mediate access to, and use of, the opportunities presented by the home and community through the way they provide help and encouragement. They control access to many materials and activities, e.g., by setting out and preparing materials so that residents can take part in activity. They make it more or less likely that clients will experience the reinforcement intrinsic to the task by the level of assistance they provide, and they shape client behaviour by their own feedback and reinforcement. They reinforce either client engagement in meaningful activity or passivity and inactivity through the disposition of their social interaction.

A number of studies have shown that even very severely or profoundly disabled residents can significantly increase the extent to which they participate in meaningful activities if staff adopt what has come to be called an “active support” model of care (Brown, Toogood, & Brown, 1987; Felce, de Kock, & Repp, 1986; Felce & Perry, 1995, Jones et al., 1999, Mansell, 1994, Mansell, 1995). Active support (Jones et al., 1996, Mansell, 1998; Mansell, Hughes, & McGill, 1994) was based on approaches described by Mansell et al. (Mansell, Jenkins, Felce, & de Kock, 1984; Mansell, Felce, Jenkins, de Kock, & Toogood, 1987) and Felce (1988). In general, “active support” has four components:

  • 1.

    Service users are offered opportunities to take part in everyday activities at home and in the community, rather than childish or special therapeutic activities. The advantages of using real activities are: (i) there is much more variety, (ii) many service users find them more interesting, (iii) they are less dependent on staff to signal each step, and (iv) they provide opportunities for service users to show that they can take part successfully in ordinary activities like other people (Felce, de Kock, Mansell, & Jenkins, 1984; Mansell, Felce, de Kock, & Jenkins, 1982).

  • 2.

    Staff pay particular attention to working as a team and to scheduling and co-ordinating the choices and opportunities they offer. This involves establishing routines (like those found in everyone’s lives) for the carrying out of ordinary activities (Saunders & Spradlin, 1991) and regular (on a shift or daily basis) planning of how they will systematically share themselves across clients to provide the high level of support needed, often by more than one person at a time, for meaningful participation.

  • 3.

    Staff focus on helping service users take part minute-by-minute (“every moment has potential”), finding the parts of complicated tasks that even the most disabled person can do and doing the other parts of the task themselves, so that the person is almost guaranteed to succeed. Staff provide graded levels of assistance to ensure success and take account of individual preferences for activities and types of help to reduce the likelihood of challenging behaviour (Dyer, Dunlap, & Winterling, 1990).

  • 4.

    Staff carefully monitor, using simple record-keeping procedures, the degree to which service users are taking part in ordinary activities with the right level and kind of support. Regular, client-centred staff meetings allow for plans to be modified in the light of experience and support consistent practices across the staff group.

Active support is, therefore, an approach that consistently and frequently offers service users opportunities to take part in age-appropriate activities at home and in the community, building on and extending their skills and preferences. It shifts the focus of direct-care staff work from traditional caretaking or programmatic tasks to being accountable for the extent to which service users are involved in directing and carrying out the tasks of their everyday lives.

Although active support has been demonstrated to be a powerful technique for improving the quality of residents’ lives (Felce et al., 2000, Jones et al., 1999), it has yet to have much impact beyond special demonstration projects. Typical staff performance in community services is still characterised by low levels of staff–client interaction (Emerson & Hatton, 1996) and little direct facilitation of resident participation (Emerson et al., 1999).

This study concerns the introduction of active support in residential services provided by a charity. It reports a natural experiment. In 1997, a research project collected information on approximately 25% of services provided by this charity and their residents. At this time, the charity was just beginning to adopt a policy of active support. In 2000, comparable information was collected on all the services and residents in order to review the needs and characteristics of people served and the kind of services they received. It was, therefore, possible to examine progress over time.

Section snippets

Design

The design was a “natural experiment,” in which data collected in two larger studies was used to construct a non-equivalent pre-test/post-test comparison group study (Campbell & Stanley, 1963). Data was collected on participants at T1 (1997) and T2 (2000). At T1, 26 people lived in homes which had not yet begun to implement active support (the comparison group) and 23 people lived in four homes that had just begun its implementation (the experimental group). At T2, the same participants were

Results

Mean scores of the experimental and comparison groups at T1 and T2 are presented in Fig. 1 (active support), Fig. 2 (engagement), and Fig. 3 (adaptive behaviour). In each case, scores are presented as percentages of the maximum possible.

At T2, the comparison group score on the ASM had decreased slightly but this was not statistically significant (Z=−.346, ns). The experimental group had significantly increased their implementation of active support from 50 to 66% of the maximum possible (Z

Discussion

The data on active support and resident engagement in this study were collected by observers rating staff and resident behaviour during a visit to each home. Although inter-rater reliability was good, some caution should be exercised over the validity of these data because they were not collected independently. There is, therefore, the possibility that observers rated engagement as occurring more extensively when they rated more active support. In the absence of independent data (e.g.,

Acknowledgements

The authors wish to thank the people with intellectual disabilities and their staff who provided the information used in this study; and the charity which provided access to its services and funded part of the study. This study was also partly funded by the National Health Service Executive.

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