Environmental opportunities and supports for exercising self-determination in community-based residential settings

Abstract

Information was collected on the environmental opportunities for exercising self-determination among 281 adults with mental retardation receiving community-based residential supports. The results indicated that: (1) the majority of participants had little or no opportunity to exercise self-determination over major life decisions (e.g., with whom and where to live, the recruitment and retention of care staff); (2) even in more mundane areas, such as where and when to eat, the majority of participants were not supported to exercise effective control; (3) variation in environmental opportunities to exercise self-determination was strongly related to a range of factors including participant ability, previous residential history, and structural and procedural aspects of the residential supports currently provided.

Introduction

Notions of self-determination and inclusion have been at the center of the ideologies and policies which have shaped services for people with mental retardation in the UK, North America and Australasia over the past three decades. More specifically, the replacement of traditional forms of institutional provision with small community-based residential supports was frequently advocated on the basis that such services are likely to facilitate both inclusion and self-determination among people with mental retardation (e.g., Heal, Haney & Novak Amado, 1988; Mansell & Ericsson, 1996; Meyer, Peck & Brown, 1991; Taylor, Biklen & Knoll, 1987). It is now clear, however that only modest progress has been made toward achieving these aims (cf., Emerson and Hatton 1996a, Stancliffe and Abery 1997, Wehmeyer 1998, Wehmeyer and Metzler 1995). It is possible to identify three main issues in the literature which has investigated self-determination among people with mental retardation receiving residential supports.

First, there is substantial evidence to suggest that opportunities for self-determination are highly restricted for many people with mental retardation (Emerson & Hatton, 1996a; Fleming & Stenfert Kroese, 1990; Kishi, Teelucksingh, Zollers, Park-Lee & Meyer, 1988; Stancliffe & Abery, 1997; Wehmeyer & Metzler, 1995). Second, while there is considerable evidence to suggest that people in smaller community-based residential settings may experience greater choice than people resident in larger, more institutional settings (Booth, Simons & Booth, 1990; Emerson et al 2000a, Felce et al 1998; Fleming & Stenfert Kroese, 1990; Lister Brook & Bowler, 1995; Raynes & Sumpton, 1987; Stancliffe & Abery, 1997), it is also clear that this is far from an inevitable result of deinstitutionalisation, particularly with regard to self-determination in such life defining areas as where and with whom people live, and the selection of support staff (Emerson & Hatton, 1996a).

Finally, four often inter-related factors, other than service location, have been identified as being associated with increased levels of self-determination among people receiving residential supports. These include: increased ability (Felce et al., 1998; Kishi et al., 1988; Raynes & Sumpton, 1987; Stancliffe, 1997; Stancliffe & Abery, 1997; Tøssebro, 1995); smaller size of home (Stancliffe, 1997; Tøssebro, 1995); being supported in independent or supported living schemes (Emerson et al in press, Stancliffe and Keane 1999; Wehmeyer & Bolding, 1999); and staffing levels, with increased opportunities for self-determination being associated with lower levels of support (Stancliffe, 1997).

The data presented in the present paper were collected in the context of a larger project evaluating multiple aspects of the quality and costs of different forms of residential supports for 500 adults with mental retardation in the UK (Emerson et al., 2000a; Emerson et al., 2000b; Emerson, et al., 2000c; Emerson et al., in press); Gregory, Robertson, Kessissoglou, 2001; Emerson & Hatton, in press; Robertson et al., 2000a; Robertson et al., 2000b, Robertson et al., in press). In other publications we have presented summary data on environmental opportunities for self-determination and explored differences in such opportunities between different forms of residential supports (Emerson et al 2000a, Emerson et al 2000b, Emerson et al 2000c, Emerson et al., in press). Specifically, we have reported that: (1) participants living in supported living schemes experienced greater choice overall than participants living in group homes serving less than four people (Emerson et al., in press); (2) people living in community-based services had greater choice overall than participants living on larger segregated sites (Emerson et al., 2000a; Emerson et al., 2000b); (3) respondents with mental retardation expressed greater satisfaction with their opportunities for self-determination if they were younger, more able, had fewer health problems and were living in settings which employed detailed procedures for activity planning (Gregory et al., 2001).

In the present paper we will: (1) provide more detailed descriptive information on the opportunities for self-determination experienced by participants receiving community-based residential supports; and (2) to identify personal and environmental factors associated with variation in these opportunities.