Breaking Out of a Distinct Social Space: Reflections on Supporting Community Participation for People with Severe and Profound Intellectual Disability

Abstract

Background Typically people with intellectual disability have small, highly restricted social networks characterized by interactions with other people with intellectual disabilities, family members, and paid workers. The goal of 'inclusion' has been central to policies that have shaped services over the past 30 years. It is an ill defined concept with disagreement about its meaning, the problems it seeks to overcome and how it should be realized. Method Ethnographic and action research methods were used to support and collect data on the implementation of a programme, known as the Community Inclusion Framework, in a group home for five adults with severe intellectual disabilities in Victoria, Australia. Results and ConclusionsA pattern of service delivery based on community presence rather than participation evolved and endured over 16 months. The findings show that most staff attached a different meaning to inclusion from that proposed in the Community Inclusion Framework, disagreed with the proposed meaning or felt these residents were too different for it to be meaningful. This suggests that priority will only be accorded to activities that lead to inclusion if staff are convinced of the veracity of this and given strong and consistent direction and support.

From solitude to solicitation: How people with intellectual disability or autism spectrum disorder use the internet

“…62.5%). The desire to meet a partner is surely explained by their very limited offline social circle, and the rarity of opportunities to actually go out and meet people without disabilities (Clement & Bigby, 2009;Forrester-Jones et al, 2006). Another explanation may be that adults with disabilities like ID or ASD are more sensitive to rejection, and thus more likely to use online dating sites (Blackhart, Fitzpatrick, & Williamson, 2014).…”

“…For people with intellectual or developmental disabilities, these relationships are often limited to other people with similar disabilities, family members and members of their paid support staff (Cambridge et al, 2002;Clement & Bigby, 2009;Forrester-Jones et al, 2006). In Sweden, parents and teachers in special programs for young adults with ID (18-20 years old) describe their students as socially isolated.…”

Counting inclusion with Chantal Mouffe: a radical democratic approach to intellectual disability research

“…For instance, scholars may avoid counting family members, staff, or other people with intellectual disabilities as members of a person's social network. They may also reject counting activities that are not 'mainstream' (Clement and Bigby 2009). These narrow definitions suggest that what counts for social inclusion is integration in mainstream settings among non-disabled community members.…”

Inclusion or outcomes? Tensions in the involvement of people with learning disabilities in strategic planning

“…Social exclusion is compounded by economic marginalisation: few people with learning disabilities are in paid employment (Hall, 2004;Department of Health 2001) and those who are typically work for five hours per week or less (Beyer et al, 2004). People with profound and multiple learning disabilities often only achieve community presence rather than active participation and inclusion (Clement & Bigby, 2009).…”