Families’ perspectives on the process of community transitions of individuals with severe intellectual and developmental disabilities

ABSTRACT

Background

Deinstitutionalisation refers to the transition of individuals with intellectual and developmental disabilities from large institutions to smaller homes in the community. The purpose of this study was to explore how family members of persons with intellectual and developmental disabilities perceived their loved ones’ community transition process.

Method

Eight family members of persons with severe or profound intellectual and developmental disabilities formerly residing at the complex care facility of St.Amant participated in semi-structured interviews. Interview transcripts were analysed thematically using an iterative inductive process and constant comparative method.

Results

Three main themes emerged from the family members’ accounts of their loved ones’ community transitions process: 1) families’ initial reactions, 2) strengths, and 3) challenges.

Conclusions

Initial reactions of family members to learning about the community transitions process were varied. Family members’ perspectives inform deinstitutionalisation efforts by highlighting facilitators such as adequate involvement, and barriers such as, unanticipated delays, to the community transitions process.

KEYWORDS:

• Community transition
• deinstitutionalisation
• family perspectives
• intellectual and developmental disabilities
• qualitative research

Deinstitutionalisation refers to the transition of individuals with intellectual and developmental disabilities living in large congregate care institutions to smaller homes in the community; herein referred to as “community transitions.” Institutions have existed at least since the thirteenth century and were first established in North America in the mid-1800s (People First of Canada [PFC] and the Canadian Association for Community Living [CACL], 2010). Upon inception, institutions were seen as a modern and enlightened living option for persons with intellectual and developmental disabilities; however, in the 1950–1970s families and activists began to demand their closure, and courts condemned them as a violation of human rights.

In 2010, People First of Canada (PFC) and the Canadian Association for Community Living (CACL) created a joint task force and outlined best practice recommendations for institutional closures (PFC & CACL, 2010). These recommendations included the followings: (1) the needs and preferences of the person with intellectual and developmental disabilities must guide the process; (2) involvement of community living champions; (3) respect for families and their experiences; (4) person-centred plans to create a real home for each person with intellectual and developmental disabilities; (5) creation of quality supports, services, and safeguards; (6) recruitment and development of qualified support staff; (7) establishment of collaborative community partnerships; (8) establishment of a clear plan and time frame for institutional closure; (9) effective and transparent communication; and (10) careful coordination and execution of each person’s individualised transition to the community plan. These elements are key to successful transitions for people with intellectual and developmental disabilities into real homes in the community of their choice as full and valued citizens (PFC & CACL, 2010).

A move from an institutional setting to a home in the community is a significant change in the lives of not only persons with intellectual and developmental disabilities but also their families (van Heumen & Schippers, 2016). To be full participants of society, persons with intellectual and developmental disabilities must have a social network that includes their family members (Nieboer et al., 2011). Despite the key role that family members play in promoting their loved ones’ wellbeing throughout their lives, the subjective experiences of family members have been largely overlooked in the context of community transition as it is evident by the limited research in this area. Our research fills this current gap in the literature.

Family members’ perspectives on the closure of government-run residential facilities have been investigated in Ontario, Canada (Griffiths et al., 2015). The study findings revealed that the initial closure announcement was traumatising for families. However, following the move to the community, 93% of families reported that their relatives had adapted well, and 91% of families rated their satisfaction with the transition as excellent. According to family members that participated in this study, a barrier to the community transition process was the limited availability of community living options, that is the size, structure, and location of the new home. Additionally, the family members involved in this study reported feeling forced to settle for the only available living arrangement, which limited their loved ones’ expression of individual differences. Tossebro (1998) reported a similar finding from a longitudinal study of community transitions in Norway, where many relatives believed they had no influence on housing options or other services. Furthermore, only 44% of relatives included in this study felt that they had been involved in the community transitions planning process (Tossebro, 1998).

In 2016, Jones and Gallus extracted six main themes from their study designed to explore family members’ perspectives on the process of community transitions in Oklahoma. These included: (1) respect for their relative’s history and the life they have built; (2) active collaboration with family members, especially in planning the move and settling into the community; (3) provision of quality and consistent care in the community; (4) inclusion of their relative in the community through meaningful life experiences; and (5) remembrance that they are family members, not professionals, and (6) that community transitions are emotionally charged personal experiences that require time for adjustment. The importance of families in the lives of individuals with intellectual and developmental disabilities has been acknowledged by several researchers (Caldwell, 2017; Doody, 2011; Griffiths et al., 2015; Jones & Gallus, 2016; O'Doherty et al., 2016; Tabatabainia, 2003; Taylor et al., 2019; Tossebro, 1998). Family empowerment was identified by Caldwell (2017) as a significant predictor of resilience in families of individuals with intellectual and developmental disabilities who recently experienced deinstitutionalisation. Educating families about the importance of deinstitutionalisation and details about the process help families make informed decisions (O'Doherty et al., 2016; Tabatabainia, 2003). Supporting families throughout the process of transition is also recommended (Jones & Gallus, 2016). Even when the transition not from an institution, collaboration and interactions with families of individuals with intellectual and developmental disabilities are considered important factors in planning and implementing positive life transitions (Taylor and colleagues, 2018; Doody, 2011).

Study aim

Our research sought to investigate the lived experiences of family members of persons with intellectual and developmental disabilities regarding their loved ones’ transitions to community living to provide an in-depth description of family members’ subjective experiences of the deinstitutionalisation process of their loved ones. More specifically, family members’ perspectives on the strengths and challenges of the community transition process that their loved ones experienced, as well as their recommendations for future community transitions.

Method

Study setting

There are two remaining institutions for persons with intellectual and developmental disabilities in the Canadian province of Manitoba: (1) Health & Transition Services of St.Amant (formerly named River Road Place), located in Winnipeg, and (2) the Manitoba Developmental Centre (MDC), which is located in Portage la Prairie. St.Amant is a complex care facility that previously supported long-term admissions. It is now the largest not-for-profit organisation in Manitoba that offers a wide range of programs and services to support persons with neurodevelopmental disabilities and their families. In 2013, St.Amant identified community transition as one of its strategic priorities for the subsequent five years (2013–2017). In 2014, the St.Amant staff began planning the community transitions of its residents, in collaboration with the residents themselves and their natural supports, including their families. The aim of these community transitions was to increase community living opportunities for people with intellectual and developmental disabilities who would benefit from community engagement. Since then, 61 persons with intellectual and developmental disabilities have transitioned from their former home at Health & Transition Services of St.Amant to smaller homes in the community (e.g., group homes or foster families).

In this qualitative study, our research team evaluated the process and outcomes of community transitions for the former residents of St.Amant, who now live in community homes. The paper presents one component of a larger mix-methods longitudinal evaluation study, which investigated the community transitions process from the perspective of family members of individuals with severe intellectual and developmental disabilities who were transitioned from St.Amant’s Health and Transition Services to community-based homes.

Research design

The descriptive phenomenological method (Amedeo, 2009) was used to investigate the lived experiences of family members of persons with severe intellectual and developmental disabilities regarding their loved ones’ transitions to community living. All qualitative data was collected by conducting in-depth, one-on-one, semi-structured in-person interviews with participating family members.

Broadly defined, the purpose of phenomenology is to describe particular phenomena by examining subjective human lived experiences (Speziale & Carpenter, 2007). Lived experiences involve the immediate consciousness of life’s events prior to reflection and without interpretation and are influenced by factors that are internal (e.g., personality traits) and external (e.g., events and circumstances) to the individual. It is the lived experience that gives meaning to each individual’s perception of a particular phenomenon and, thus, presents to the individual what is true or real in their life (Giorgi, 1997). The goal of phenomenology is to clarify the meanings of phenomena from study participants’ lived experiences and can result in valuable knowledge about individuals’ experiences.

The overarching research question that our study aimed to answer was: how do family members of persons with intellectual and developmental disabilities experience their loved one’s transition to community living? To address this research question, study participants’ perceptions, thoughts, memories, perspectives, and emotions or feelings regarding their loved one’s transition to community living were investigated during the interviews.

Considering the paucity of research examining this particular group of family members and the need for a fundamental understanding of their lived experience, the descriptive phenomenological method is well suited to examine the experiences of family members of persons with severe intellectual and developmental disabilities regarding transitions to community. Persons are diagnosed as having severe or profound intellectual disability if their intelligence quotient (IQ) is equal to 35 or lower and if they require extensive support to perform activities of daily living (American Psychiatric Association, 2013). Due to the multiple challenges associated with collecting valid and reliable data of these individuals, this vulnerable subpopulation of persons with intellectual and developmental disabilities has been largely excluded from research (Coons & Watson, 2013). Our study was approved by the Health Research Ethics Board at the University of Manitoba and the St.Amant Research Access Review Committee.

Study participants

Primary informants were eight family members of persons with severe intellectual and developmental disabilities who experienced a community transition between 2015 and 2019. All interviewees were mothers, and their ages ranged between 56 and 78 years of age. At the time of the study, their adult children (five females and three males) were aged 27–52 and had been living in the community for a minimum of 6 months and a maximum of 5 years. Before transitioning to the community, they had lived in Health & Transition Services of St.Amant for 4–35 years. All these individuals were clinically diagnosed with severe intellectual and developmental disabilities. Furthermore, the majority of them were nonverbal and presented complex health care needs.

Data collection procedures

Non-probability, purposeful sampling was used to recruit study participants in collaboration with the St.Amant staff members who were directly involved in the planning and implementation of community transitions. A maximum variation sampling technique (Palinkas et al., 2015) was used to recruit a set of heterogeneous study participants who may likely provide a wide range of subjective perspectives on the community transition process their loved ones experienced. The criteria considered to select study participants included: ethnocultural background, socioeconomic status, age, and length of involvement with St.Amant. These criteria were selected to ensure our sample would reflect a diverse set of lived experiences from a group of families.

Participants first learned about the study from a St.Amant staff member (social worker) who was involved in planning and implementing community transitions of persons with intellectual and developmental disabilities at the organisation and therefore was familiar with all family members. To protect the anonymity of family members, their identifying information (i.e., names and contact information) were shared with the study team only after they expressed their interest in participating in the study. Twelve family members were invited to take part in the study, and eight expressed interest in participating.

Next, a graduate research assistant contacted the eight family members who had expressed interest in participating in the study by phone to provide them with details about the study and what their participation would entail. Then, the research assistant met with all participating family members individually to conduct the interviews, either in their homes or in the homes where their loved ones were residing at the time. These locations were chosen by study participants for their convenience and privacy. A clinical psychologist with training in qualitative data collection and intense interviewing conducted all the interviews and questions about the same topics were asked of all study participants. The interviewer was a member of the research team of the same gender as the study participants. These elements facilitated developing rapport and building trust between the interviewer and study participants. Written informed consent was obtained from all study participants prior to conducting the interviews. All study participants were offered $20 CDN after the completion of the interview as compensation for their time and involvement.

A very flexible interview guide was used during data collection to allow the unique lived experience of each family member to emerge (Giorgi, 1997). Interview questions were developed in consultation with St.Amant staff who were involved in the planning and preparation of the community transitions. Sample interview questions include:

• Why do you think your loved one was moved into a community home?

• Do you feel like you were adequately informed and involved in the St.Amant transitions planning process for your loved one? How?

• Please evaluate your level of involvement in this process. Would you say that you had: too much involvement, the right amount of involvement, or too little involvement?

Interviews lasted 40–60 min and were audio-recorded and transcribed verbatim. During data collection, the interviewer acknowledged their own biases and any preconceived assumptions they may have held regarding the study participants’ lived experience, feelings or thoughts about the community transitions process, and listened attentively to the information participants shared to describe their lived experience, (Amedeo, 2009; Giorgi, 1997). After the interview, researchers repeatedly reviewed and studied the data as they were transcribed (Spiegelberg, 1975). In so doing, the researchers began to learn about family members’ experiences. Upon transcription, the names of all participants and their loved ones, as well as other potentially identifiable information, such as addresses and locations, were redacted to protect the anonymity and confidentiality of study participants. Participants’ accounts are reported in the paper using pseudonyms in place of their first names. We did not collect extensive demographic information. coordination and execution of each person’s individualised transition to the community plan.

Data analysis

Two research team members thematically analysed the interview transcripts using an iterative inductive process and constant comparative method (Charmaz, 2014). Both researchers acknowledged that they have positive views of CT for individuals with intellectual and developmental disabilities. Therefore, since the beginning of the data analysis process, reflective memos were created independently by the two researchers to identify and clearly define their biases and preconceived assumptions they brought into the process. Through this process, both researchers were able to recognise the aspects of their lived experiences that may have impacted the research process and mitigate such impact, including their potential bias to hold positive views of the process of deinstitutionalisation, given the nature of their research work.

The two researchers independently conducted content analysis of the interview transcripts and extracted the main themes that emerged from the data regarding participants’ lived experiences. Specifically, analysis of interview transcripts involved identifying themes in relation to how study participants perceived and experienced the community transition process.

A first coder with extensive experience in qualitative data analysis provided training to a second less experienced coder to ensure consistency and reliability. Both researchers independently analysed all interview data, and then compared emerging themes to confirm consistency and reliability. By being absorbed with the data, the researchers began to recognise the emergence of universal essences or eidetic structures in relation to the experiences of being a family member of a persons with severe intellectual and developmental disabilities who moved from a large long-term care facility to a community home.

No interpretations were made regarding what study participants reported during the interviews. Rather, the descriptions given by participants were analysed and divided into meaning-laden statements; next, those meanings that were essential to the understanding of the study participants’ lived experiences were gathered and organised into coherent themes (Giorgi, 1997). This data analysis process allowed the researchers to describe in writing the structure of the phenomenon being studied. Because of the nature of phenomenological research, data analysis involved immersion in the data collected through face-to-face interviews to bring to written description the distinct, critical elements of family members’ experiences in the context of their loved ones’ transition to community living (Spiegelberg, 1975). As such, it was possible to generate a comprehensive description of these experiences.

Trustworthiness

The trustworthiness of qualitative data may be measured by assessing how well the study findings are supported by evidence and reflect an accurate account of the study participants’ lived experience (Lincoln & Guba, 1985; Ungar, 2004). We confirmed the data’s trustworthiness by following a semi-structured interview format, wherein family members were asked open-ended questions in a comfortable environment of their choice and encouraged to share their opinions, thoughts, and ideas freely. Throughout the interview process, the interviewer prompted family members to elaborate, clarify, and provide more detail to their responses so that their lived experiences were well understood and accurately interpreted. Two researchers, including the interviewer, independently analysed the qualitative data and, by writing reflexive notes, exposed assumptions about the study’s participants and any of their own expectations of the research findings.

Results

Study participants were informed about their loved one being transitioned into the community from St.Amant through a variety of different communication methods including meetings, phone calls, and letters. Some of the families were in close contact with St.Amant for years while their loved ones were living at the complex care facility. Frequent communications occurred between family members and St.Amant staff about the status of the planned transitions. When available, and as much as possible, study participants shared that family members informed the community transition process by selecting the location, design, and décor of the new home in the community. The timeline of the community transition process was different for each individual, as the transition plans were customised to fit each person’s needs. Three main themes emerged from analysing study participants’ accounts: (1) families’ first reactions to being informed of the community transitions, (2) families’ perceived strengths of the community transition process, and (3) families’ perceived challenges associated with the community transition process. These are described below with some suggestions study participants provided to improve future community transitions of persons with intellectual and developmental disabilities.

Theme 1: Families first reactions

First reactions to learning about the plan to transition loved ones from St.Amant to community living varied vastly from feelings of hesitation and opposition to support. Study participants who reported feelings of hesitation shared that they were nervous or worried about their relative transitioning to the community because it introduced a change to their environment and induced feelings of stress, both on behalf of their adult child, and on the mothers themselves.

Ellen:

“ … I was just stressed that things are going to be really different … (she) had settled into St.Amant quite nicely, she knew the routines. I was hesitant for her to move out because I knew she had all the services and everything provided for her there … I was very stressed with the whole moving thing, because like I said, with her being special needs, it, any change is hard.”

Ina:

“I’m not scared, it’s just that I know that she is good there, she’s been looked after, she’s settled, y’know. Because for (her) well another change is hard for her. Like y’know, a change, there’s a change … Yeah, the behaviour might come back and all that stuff, because everything was good, right.”

Some study participants worried that community services would be limited or inferior to those provided in an institution.

Faith:

“Well, because we didn’t know … the care was going to be at the time. So, what kind of accommodation, like I didn’t want her to be placed in a home where there was maybe six or eight other people that she wouldn’t get the uh … because normally I think they don’t, they don’t have the person to care for just a one … ”

Ellen:

“I was also concerned about the lack of services … provided in house. The dentist is at St.Amant, OT is at St.Amant, physical therapy is at St.Amant, it’s all there. So I was concerned about her losing out on that … and that, that, I was thinking that she might not get the same level of care.”

Harriet:

“We were also scared, uhm, apprehensive, that he wouldn’t have access to the same amount of recreational needs. We were apprehensive that he wouldn’t have access to that same amount of activities.”

Other study participants worried that their relatives would be isolated in a community setting. For instance, Ellen said: “I was concerned that she wouldn’t have a lot of people around her. Like, people that she, her friends.”

Initial opposition to the idea of transitioning their loved one from St.Amant to the community was expressed by several study participants:

Carol:

“When they first said they were gonna move him I was very upset, because I said where were they going to put him? And they said put him way up in the north end [which was far from her home] … I felt like he was being evicted from his home.”

Mandy:

“Well, I told them that I wouldn’t want to be kicked out of my home after (so many) years.”

Ina:

“But, at first, I was not happy. I was crying because I’m happy where she was, is right, like at St.Amant they do great care there. And I said why move, like she’s settled, like she was good here, and everything. And why do you have to move her? I was so upset that even if the social worker would call, I don’t answer.”

Ellen:

“I didn’t really want her to move, y’know uhm, she was comfortable where she … I mean it’s the comfort level, we’re all comfortable and don’t shake things up. I knew she was being looked after.”

These negative feelings may have been because some study participants shared that the community transition announcement was unexpected, the rationale or motive was unclear, or the anticipated outcome was unknown. Only two study participants reported expecting that community transitions would eventually occur. Ellen mentioned: “ … we put her into St.Amant with the understanding that at some point she would move into the community,” and Harriet said: “ … when this was first brought up to us … a few years ago, we were apprehensive, but we have warmed to the idea.”

Study participants also reported diverse beliefs about why they thought their relative was transitioning to the community. Many study participants thought the transition was related to their relative’s health care needs or physical condition. Carol shared that she thought her loved one was moving to the community: “ … because he was ambulatory,” while Harriet believed the move was due to her loved one being: “ … (he’s) in relatively good health.” Ina’s understanding of the rationale for her loved one’s transition to the community was: “ … because she’s young,” Faith reported that it was her loved one was: “ … (she’s) more independent,” and Goldie thought the reason was: “ … because he was very not hard to take care of … .”

There was notable confusion among study participants regarding who was responsible for the decision to transition individuals from St.Amant to the community. While Brenda reported that she believed the community transitions were parent-driven: “ … it was all because of me,” other study participants were less sure. Carol thought: “ … because the government made that decision,” while Ina did not know: “ … I’m not sure, I didn’t even ask … I don’t even know.” Mandy expressed her confusion by sharing: “I don’t understand what’s going on in WRHA (Winnipeg Regional Health Authority), so just say I don’t understand what was behind it,” and Goldie shared: “They said he has to go because that’s what they were doing … they were just starting to get the residents into community homes.”

Finally, unknown anticipated outcomes of the community transitions process may have contributed to initial feelings of opposition, which subsided after families witnessed the benefits of the transition process first-hand. Goldie shared that: “ … I did not realize … he had a caregiver (in the community),” and Ellen later reflected: “ … I look back and think why was I so worried?.”

Theme 2: Strengths of the community transition process

Positive aspects of the community transitions process identified by some study participants included adequate involvement, planning and preparation, and feeling supported. Many of the study participants felt as though they were treated with respect by St.Amant professional staff. Ina reported: “They were nice to me,” and Faith agreed: “ … it’s always been very professional, very caring … .” Study participants felt that they were kept informed of the process. Harriet shared: “If we weren’t able to make meetings, they would call us” and Faith said: “ … they just kept up with the updates and stuff that was going on.”

Study participants reported adequate planning and preparation to ensure a gradual community transition. For some individuals, discussion and planning occurred over the course of several years, as in the case with Carol who shared: “I’m going back maybe seven, eight, nine years ago … .” Others, like Harriet, reported that is was helpful to be repeatedly informed about the move to community living: “ … after every three, four, five times, you start getting used to the idea … .” Family members appreciated that they or their loved one were able to visit the new home in the community before they transitioned. Ellen shared: “ … but once it started getting furnished and the basics were there, her bed was there, she had a sleepover, so she got used to the house,” and Harriet added: “ … it was a gradual build-up to him transitioning there full time.”

Most study participants felt that they were adequately involved in the community transitions process. Frequent transition meetings were reported as accommodating and respectful. Harriet shared: “I felt they kept us adequately involved … that we were partners in this. We weren’t being dictated to, and yet they weren’t asking us every step of the way, what should we do, should we do this, should we do that. I think it was probably equal,” and Ellen also reported: “ … I was very involved in the transition.” A gradual process and the opportunity to meet new community staff were also highlighted as strengths of the community transitions process by some study participants. Ellen shared: “ … The helpful thing was the staff and the amount of time spent at St.Amant prior to the move that allowed the staff to learn about (her) … ,” and Faith also stated: “And I know the caregiver, she would often come here and uh, just to get to know [Person transitioned]. And her wants and needs, and uh.” In addition to meeting community staff before transitioning to the community, study participants reported being able to choose and visit the new home in the community. Mandy reported: “There were three different homes considered … and we had input in every one of them” and Ina’s experience was similar: “They said if you want, we can go see the house, and see how … what you think … .” These opportunities were considered positive aspects of the lived experience of the community transitions process for both the study participant and their loved one.

Theme 3: Challenges of the community transition process

Challenges associated with the community transition process identified by some study participants included their relative’s adjustment to a new home environment, roommate, or routine. Goldie reported: “Yeah, he wanted to go to the door, and he’d go put his boots and his jacket on, and stuff like that. But now he doesn’t, he’s fine.” A minority of study participants reported other challenges such as unanticipated delays and banking issues experienced by Brenda: “They didn’t get the house built, like they were supposed to have it built in a year, … or two,” and Ina expressed that she was not able to choose the location of the home in the community: “ … they didn’t give me any choice of which area.”

Families’ perspectives and suggestions post-transition

Most study participants reported feeling that, overall, the community transition process was positive, smooth, and successful, despite initial feelings of hesitation or opposition.

Harriet:

“ … like during the move no regrets, now no regrets either … Like we’re actually happy that he’s in a home.”

Ellen:

“Uhm, the way they did the transition was actually very good … they did it very well … So, it was a very easy transition. Uhm, needs were met. If there were any questions for the staff, y’know I was always there. But everybody’s most concern was her comfort and her care, so … ”

Carol:

“(he) adjusted way better than I did … he adjusted like unbelievably well.”

Faith:

“ … I’m very satisfied. I’m very happy with how things are developing … wouldn’t know of any … they … they’ve done … to me they’ve done everything that could possibly have been done … I’m not very uh … no I can’t really see that there was anything that uh, bothered us with the transition.”

Some of the study participants suggested that more sensitivity should be used when communicating community transitions plans with family members. Ina shared: “ … as a mother, it is just hard for you for your daughter to move, and you know that she is there, so I think it’s the way how you tell them, the mom like me.” Goldie also expressed: “The only thing, like I said, was initially, the communication was that they didn’t explain properly to me that I would, that he would be getting one-on-one and I would be seeing him once a week, at least, yeah. Yeah, so.” Others expressed the importance and need to continue to advocate for client-centred care throughout the community transitions process.

Brenda:

“Because I know my daughter, I know what she likes, and I want her to have that … it’s about the proper care, giving that person the quality … best quality of life you can do and going the extra mile to see what makes them happy … so I think that they’ve got to allow people to do more things and forget the liability. You can’t prevent yourself from living a life in fear and liability all the time.”

Ellen:

“Uhm, I can’t speak for everybody, uhm, but because (she) is so dependent on everybody for everything, uhm, just being aware of her wants, needs, and likes and dislikes. If there was somebody moving that didn’t have somebody as involved as me, or shall I say, a (expletive) of a mom, somebody who did know her once and their wants and likes and stuff, to make sure that’s you know, the colour of the bedroom, to, what things go on the walls.”

Other suggestions from single study participants included creating an anonymous suggestion box for family members to submit feedback, improving connections between service providers, installing surveillance systems to monitor care, providing greater monetary compensation for paid caregivers, assisting with smooth financial transitions during the community transitions process, and developing a checklist for families to use during the community transitions process.

Discussion

The study provided information on the subjective experiences of family members of persons with severe or profound intellectual and developmental disabilities regarding the community transition process their loved ones had experienced. As noted here, family members of persons with neurodevelopmental disabilities are an understudied stakeholder group. In their report, People First of Canada and Canadian Association for Community Living (2010) highlighted guiding principles and values known to achieve positive outcomes in the process of community transition. From the family members’ perspectives of those included in our study, who were all mothers (even though it was not the intention of our recruitment efforts), the community transitions process implemented by St.Amant aligned with most of these guiding principles and values as it included: (1) the right to choose where and with whom the persons transitioning will live in the community, (2) the right to customised living arrangements, (3) the provision of necessary and high-quality services and supports in the community, and (4) support from their families to assist in decision-making. The right to control over individualised funding was not assessed in this study; however, this aspect of community transition should be included in future evaluations.

In line with previous research findings (Griffiths et al., 2015; Jones & Gallus, 2016), despite ultimately feeling satisfied with the outcomes of the community transition process, many of the study participants included in this study initially expressed feelings of hesitation or opposition. These initial negative reactions and other barriers to community transitions such as delays in this process may be avoided by improving the communication between the institution the family members. Strategies such as clarifying why the community transition process is being implemented, reassuring families that their loved ones would receive high quality care in the community, and providing a timeline of activities associated with the community transition process are reccommended to ease family members apprehension and provide a pleasant community transition experience to all family members involved.

In previous studies, family members shared their perception of limited housing options for their loved ones in the community, and their belief that they had no choice in this decision (Griffiths et al., 2015; Tossebro, 1998). However, study participants from our study listed their ability to choose, personalise, and visit the home in the community as positive aspects of the community transitions process for themselves and their loved one. This is a very important finding because currently community living options are favoured over institutional settings because they are believed to offer residents with intellectual and developmental disabilities opportunities to exercise their self-determination and agency (Ager et al., 2001). Therefore, it is important to provide these opportunities to persons with intellectual and developmental disabilities and their family members since the beginning of the community transition process. This type of family members’ involvement in this process is especially important when the person with intellectual and developmental disabilities being transition has severe or profound intellectual and developmental disabilities and therefore, they present significant communicative limitations. In these cases family members often act as proxy by advocating in behalf of the person being transitioned and therefore, their wishes should be especially be considered.

Study participants included in our study reported feeling respected and supported by the institutional staff and, overall, shared that they were adequately involved in the planning and preparation of the community transitions process. While previous research found that family members do not always feel involved in this process (Tossebro, 1998), more recently, active collaboration with family members to plan community transitions has been identified (Jones & Gallus, 2016). Based on the feedback collected from most of our study participants, the community transitions process at St.Amant supported adequate, appropriate and respectful involvement of families of individuals with intellectual and developmental disabilities. A minority of study participants requested greater sensitivity when sharing information about the community transitions process.

Limitations to this study include participants being located only in Winnipeg, Canada, which means our findings may not be representative of other geographic areas. We also did not collect extensive demographic information. Another limitation could be the fact that only families were interviewed. Most of the people supported by St.Amant do not have a family member involved in their care. The inclusion of non-family advocates and other natural supporters is recommended for future research. Finally, other family members besides mothers, such as fathers or siblings, may have a different perspective of the community transitions process.

Practice implications

While our study included only one of the two the remaining institutions for adults with intellectual and developmental disabilities in Manitoba, our findings are important to inform future community transitions in Canada and internationally by serving as a guide for other institutions that are planning the community transitions of their residents with intellectual and developmental disabilities. Our study findings have demonstrated the possibility of successful and individualised transitions from an institutional setting to the community for individuals with severe intellectual and developmental disabilities from the perspective of mothers. To our knowledge, this is the first study of its kind in Canada and may serve as an important example to guide the deinstitutionalisation process in other parts of Canada and around the world.

Research implications

The inclusion of individuals with severe or profound intellectual and developmental disabilities in our research study provides evidence for a successful transition to community living for this subpopulation of persons with intellectual and developmental disabilities, who are often excluded from research and may not typically be considered for community living. Finally, as a point of reflection, it is interesting to note that only mothers consented to participate in our study, even though all family members were invited to participate as part of our recruitment strategy. Inclusion of the voice of other family members may be an important consideration for future research iniatives involving individuals with intellectual and developmental disabilities transitioning to community living.

Conclusions

Based on our findings on the perspectives of mothers, for the most part, the community transitions were gradually paced and well planned with adequate involvement of family members of persons with intellectual and developmental disabilities. Other successful aspects of the community transitions process identified by mothers of persons with intellectual and developmental disabilities in our study included being treated with respect and receiving support from staff, having a say in choosing the home in the community, and meeting new support workers and before moving into the community. Mothers also shared recommendations to improve the community transitions process that included displaying greater sensitivity to family members when initially communicating community transition plans, and continuing to focus on providing client-centred care throughout the community transition process. By sharing their lived experience of the community transitions process of their loved ones, the perspective of mothers in our study may inform future community transition processes and deinstitutionalisation efforts at St.Amant and elsewhere.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by funding from the Winnipeg Foundation, St.Amant Foundation, and Mitacs.