Community participation and staying home if you want:USadults with intellectual and developmental disabilities

Abstract

Background: Requiring adults with intellectual and developmental disabilities to go on community outings with co-residents and staff is contrary to community-living policy's focus on person centredness and choice of activities/companions. Method:We analysed 2018-19 National Core Indicators data from 36 US states concerning 7968 adults living in staffed, non-family, multi-client settings. The focus outcome was being able to stay home if you want when others in your home go out.Results: The 42.0% of participants who could stay home were more likely to go out with friends, family or alone, and less likely to go out with staff. Those who could stay home participated in a similar variety of community activities and went out more often to shop or for errands. Conclusions: Individuals who could stay home likely had more choice about where, when and with whom they went out. Strategies for greater person-centredness are proposed. K E Y W O R D S block treatment, community participation, disabilities, intellectual and developmental, living arrangements, staying home alone 1 | INTRODUCTION Many United States adults with intellectual and developmental disabilities reside in staff-supported living settings, the vast majority (93.6%) being community based and financed through Medicaid Home and Community-Based Services (HCBS) funding (Larson et al., 2020).Community living is expected to provide greater person-centredness, community participation, and choice, and be free of the regimentation of institutions. However, institutional practices persist in some staffed community-living settings, such as group homes (Bigby, Cooper, & Reid, 2012;Bigby, Knox, et al., 2012). Kozma et al.'s (2009) review of deinstitutionalisation research concluded that most community-living residents are better off than institution dwellers, but there is considerable variability in outcomes among community-living settings, with staff support practices being an important influence on outcomes.Block treatment is one cardinal feature of institutions (Pratt et al., 1980). It is the opposite of person centeredness, with individual residents being treated as a group, regardless of personal preference or need. An example is all group home residents being required to attend a community outing together irrespective of each person's interest in the activity or preferences for companions. Bigby, Knox, et al. (2012) examined staff working practices in Australian group homes that had poorer resident outcomes, such as community participation. They found group treatment to be a key dimension of

From mainstream employment to mainstream retirement: A randomised controlled trial of a transition to retirement intervention for adults with intellectual disability

“…Prior to KA intervention, they had decades of socially inclusive mainstream employment due to the skilled support of DES, but for almost all, it was only when the KA intervention became available that they participated independently in mainstream community groups or volunteering. Stancliffe et al (in press) documented the widespread need for such supports given that 45% of US adult intellectual and developmental disability service users had an unmet desire to join a mainstream community group.…”

Current services and outcomes of formerly institutionalised and never‐institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis

“…The following six personal characteristics served as PSM matching keys: age group, sex, level of ID (dummy coded), challenging behaviour, mental health, and mobility. We chose these personal characteristics either because they are basic demographic variables (sex) or have been shown in previous research to relate to outcomes of interest such as choice (Stancliffe et al, 2011; Tichá et al, 2012), employment (Stancliffe et al, 2019), living arrangements (Stancliffe et al, 2011), loneliness (Stancliffe et al, 2007, 2009, Stancliffe et al, 2010), and socially inclusive community participation (Stancliffe al., in press). Importantly, age mirrors life history, with older participants having vastly different past access to education, employment, disability services and many other opportunities relative to younger people with intellectual and developmental disabilities.…”