Our Homes: An inclusive study about what moving house is like for people with intellectual disabilities in Ireland

Abstract

Accessible Summary The Inclusive Research Network (IRN) is a group of researchers who do projects that matter to people with intellectual disabilities in Ireland. This paper is about a project we did to learn what it is like for people with intellectual disabilities in Ireland to move from one house to another. We talked to 35 people who moved house. Some people chose where to move but others had no choice. Feeling safe made them happier in their new home. One third of the people we spoke to had no choice about where they live and who they live with. Having these choices is their right under the United Nations Convention on the Rights of Persons with Disabilities. People with intellectual disabilities need supporters who listen and respect them. Abstract BackgroundSupporting people with intellectual disabilities to live well in communities they choose is deinstitutionalisation's central aim and endorsed by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2006). This study focused on the experiences of people with intellectual disabilities in Ireland when moving home using an inclusive research approach. MethodThis inclusive research project employed a qualitative approach. Participants included 19 men and 16 women (total n = 35) with ages ranging from 22 to 77 years. Structured interviews attended to the experience of moving home and the supports accessed during and after the transition to community living. ResultsThematic analysis yielded four themes: “expressing choice” in the moving process; “feeling connected or isolated when moving”; “accessing supports during and after the move”; and finally, participants' reflections on “experiencing vulnerability and feeling safe” while resettling. ConclusionsThis is the first study about people with intellectual disabilities moving home to be collaboratively designed and completed by an inclusive research team. Although much is understood about the long‐term benefits of engaging in meaningful choices about housing and supports, concerns remain about the extent to which the will and preferences of people with intellectual disabilities in Ireland are respected when moving home.

Measurable Indicators of CRPD for People with Intellectual and Developmental Disabilities within the Quality of Life Framework

“…Article 19 (living independently and being included in the community): 14 papers [ 8 , 38 , 39 , 40 , 42 , 45 , 47 , 49 , 50 , 53 , 63 , 66 , 68 , 69 ] mention personal outcomes or indicators associated with the right to live independently and be included in the community (i.e., not to be institutionalized in segregated environments, not to be restricted in options for in-home residential and other community support services). To achieve this, the papers highlighted the right to receive the necessary individualized supports (person-centered planning, individualized support to live more independently) for everyday activities to do with autonomy in the home (e.g., getting to appointments, running errands, housework, personal finances, heavy household chores, preparing meals, personal care and medical care); support from professionals (sufficient personal resources) and service providers (to organize preferred housing, help find housemates, forge social connections); in housing, to facilitate flexibility in terms of rules and staff control, freedom to move around and to arrange daily home life, enjoy own space, individualized care, small groups, living with their partner; trust and support from family (role of the family as a source of support and as facilitators of autonomy, opportunities to practice skills, avoiding overprotection); special attention to access supports during and after moving (to organize move, types of support, relationships with supporters, quality of supporters); being within walking distance of amenities and shops; support for older people with disability; control over support arrangements (choose support workers and the kind of support they receive); housing affordability; access to information on independent living experiences.…”

“…Article 16 (freedom from exploitation, violence and abuse): 12 articles specify indicators or personal outcomes on this aspect [ 8 , 38 , 40 , 42 , 49 , 57 , 59 , 63 , 65 , 66 , 74 , 82 ]. Those frequently cited include freedom from concealment, abandonment, abuse or neglect; segregation or exclusion (social and physical isolation); bullying (name calling; cyberbullying) in educational and social settings; experiencing vulnerability and not feeling safe (in relationships, in immediate environment); gender-based violence; sexual abuse (being able to detect abuse), physical violence (violent relationships); economic abuse.…”

“…Some authors have tried to differentiate between the techniques, arguing that the emancipatory approach is achieved when the initiative and research topic is proposed by people with disabilities, and it is they who control the research, while the participative approach places greater emphasis on the representation of people with disabilities at all stages of the research process [34,35]. The most common ways for people with ID to participate in these studies are by providing their views and opinions through focus groups, structured interviews, and workshops [35][36][37][38]; by acting not only as study participants, but also as advisory committee members and co-researchers [39,40], making it essential that they receive research training [41]. The most frequently cited limitations allude to the challenge of remaining inclusive throughout data collection and analysis, together with including people with complex support needs, such as those with profound and multiple disabilities or who use alternative or augmentative communication approaches.…”

Homelessness and people with intellectual disabilities: A systematic review of the international research evidence

“…Most people with ID live at home with their family; however, some individuals live in congregated institutional and other supported living settings (Salmon et al., 2019). In many countries across the world, there have been significant changes and developments with moves away from institutional models of care to care and support being provided in the community, enabling people with ID to live independently.…”

Analyzing Roles, Barriers, and Supports of Co‐researchers in Inclusive Research

“…This implies rethinking the role of people with IDs in the research processes that concern them (Johnson, Minogue, & Hopklins, 2014; O‐Brien, McConkey, & García‐Iriarte, 2014; Pallisera, Fullana, Puyaltó, Vilà, & Díaz, 2017). In fact, the specialized literature is progressively adopting a more inclusive research approach (Beighton et al, 2017; Dorozenko et al, 2016; Frankena et al, 2019; Haigh et al, 2013; Iriarte, O'Brien, McConkey, Wolfe, & O'Doherty, 2014; Johnson, 2009; Johnson et al, 2014; Salmon et al, 2018; Walmsley, Strnadová, et al, 2018; Walmsley & Johnson, 2003), and co‐researchers even appear as co‐authors of the articles (Burke et al, 2003; Flood, Bennett, Melsome, & Northway, 2013). There are several examples, especially in English‐speaking countries, that illustrate their roles as advisors (see, e.g., Keyes & Brandon, 2012; Kidney & McDonald, 2014) when participating in research.…”