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Articles

The role of volunteers in the social integration of people with intellectual disabilities

, &
Pages 154-167 | Accepted 04 Jun 2017, Published online: 26 Apr 2018

ABSTRACT

Direct support workers play an important role in the social integration process of people with intellectual disabilities. However, time restrictions and client–worker ratios may make improvements to even physical integration difficult, and in some cases almost impossible. This research, conducted in the Netherlands, investigated the role of volunteers in enhancing the physical integration of people with intellectual disabilities, as the first step towards social integration. Study 1 involved an exploratory inventory of volunteer tasks in a large disability service organisation; in Study 2, support workers completed a questionnaire in which they rated the tasks suitable for volunteers to undertake. Most volunteers performed activities that enabled people with intellectual disabilities to be physically integrated in the community. The most frequent of these was “assisting with group activities.” Most support workers believed that supporting community-based activities was not a suitable task for volunteers. Although volunteers already play a role in the social integration of people with intellectual disabilities, support workers did not acknowledge or were unaware of this role and the associated current and future possibilities for supporting people with intellectual disabilities.

The social integration of people with intellectual disabilities has been the subject of a considerable body of research (e.g., Carnaby, Citation1998; Cramm, Finkenflügel, Kuijsten, & Exel, Citation2009; Makharadze, Kitiashvili, & Bricout, Citation2010). Various definitions are found in the literature about this phenomenon. Russell (Citation2009), for instance, defined social integration as “the degree and content of our relationships with others”; while Van Alphen (Citation2011) defined it more specifically as having “valuable relationships with others in a community, in which the person with [an intellectual disability] is fully accepted and valued as an interaction partner, without denying their differences or limitations” (p. 19). Some studies have used social integration as an umbrella term to describe a process involving two preconditions: physical integration and social contacts (Bos, Citation2015; Carnaby, Citation1998; Cummins & Lau, Citation2003; Den Daas, Nakken, Smrkovsky, & Struik, Citation2007; Thorn, Pittman, Myers, & Slaughter, Citation2009; Van Alphen, Dijker, Borne, & Curfs, Citation2010; Van Gennep & Ruigrok, Citation2002). Together, these preconditions have been described as “encounters” by Bigby and Wiesel (Citation2015), who stated that “encounter refers to social interactions between strangers in public places, which consist of fleeting contact or longer and more convivial moments where a common purpose is shared. These are neither simply anonymous free mingling, nor interaction based on established relationships” (Bigby & Wiesel, Citation2015, p. 308). In addition to social integration, several other terms – such as community participation, non-segregation, and inclusion – have been used in the literature to describe the same process (e.g., Bigby, Clement, Mansell, & Beadle-Brown, Citation2009; Carnaby, Citation1998; Cummins & Lau, Citation2003; Den Daas et al., Citation2007; Thorn et al., Citation2009; Van Alphen, Citation2011; Van Gennep & Ruigrok, Citation2002). Community presence and interpersonal relationships are also included in the definitions of these terms (e.g., Simplican, Leader, Kosciulek, & Leahy, Citation2015).

Physical integration (i.e., being present in the community) is commonly believed to be a first and crucial step to social integration. Only when people with and without intellectual disabilities inhabit the same community and can see (and hear) each other can interaction between them be initiated. When people with and without intellectual disabilities meet frequently, they become familiar with one another, and genuine social contact can be established, which enables the next step in the social integration process. Day-to-day interactions in neighbourhoods consist predominantly of greetings and “small talk” (Bos, Citation2015; Bredewold, Citation2014; Johnson, Douglas, Bigby, & Iacono, Citation2012; Van Alphen et al., Citation2010). These brief contacts typically encompass verbal communication (Bos, Citation2015; Van Alphen et al., Citation2010). However, it is important to note that even though physical integration is a precondition for social contacts, it does not guarantee that such contact will actually take place.

Several studies have shown that physical integration, and social contacts in particular, are difficult to achieve for people with high support needs, such as individuals with severe or profound intellectual disabilities, and for those with intellectual disabilities and behavioural or psychiatric problems, or both (e.g., Bigby et al., Citation2009; Van Alphen et al., Citation2010). First, these client groups are not often present in the community (Bos, Citation2015; Van Alphen et al., Citation2010) because the severity of their disabilities or the degree of problem behaviour means that they depend on others to assist them to join the community (Den Daas et al., Citation2007; Mansell, Citation2006). Second, people with profound or severe intellectual disabilities mainly communicate non-verbally rather than verbally (Bigby et al., Citation2009), which means other people need to become comfortable with this means of communication before they can get to know one another and develop some kind of mutual contact.

Direct support workers who assist people with intellectual disabilities in their daily activities play a crucial role in their clients’ social integration (Chowdhury & Benson, Citation2011; Mansell et al., Citation2002; Mansell, Citation2006; Overmars-Marx, Citation2011; Van Alphen, Citation2011; Venema, Otten, & Vlaskamp, Citation2015). Between countries there are differences in the qualifications and training of support workers. For example, in the Netherlands they have four years of vocational education while in countries such as Australia or the United Kingdom they have a basic post-school training. Despite these differences, a common role for support workers is supporting their clients to go out into their communities and facilitate, initiate, or support contact between people with and without intellectual disabilities. Volunteers also play a potentially key role in social integration of people with intellectual disabilities (Wilson et al., Citation2013) as their very presence and their relationships with people with intellectual disabilities promotes social integration. However, volunteers could contribute more to the social integration process (Price, Hall, & Gooberman-Hill, Citation2015): for example, in a study by Stancliffe, Bigby, Balandin, Wilson, and Craig (Citation2015), volunteers were trained as mentors for older people with intellectual disabilities to help them participate in mainstream community groups. Bigby and Craig (Citation2016) described a relationship between a volunteer and an individual with a severe intellectual disability, who helped each other to take part in different groups, such as choirs and coffee clubs, and together they performed activities in the community. However, apart from these two studies, we have been unable to find any studies addressing the ways in which volunteers might contribute to social integration of people with intellectual disabilities.

To further investigate the role of volunteers in enhancing social integration, our first study sought to understand the role currently played by volunteers in enhancing the physical integration of people with intellectual disabilities in the Netherlands. Support workers’ views about the nature of volunteer work are important in this country because they have to work alongside volunteers. For example, this might involve sharing information about the particular support needs or preferences of their clients. The second study built on evidence generated by the first study, and asked support workers which tasks they felt were suitable for volunteers. The outcome of these two studies has potential to help organisations to make better use of volunteers as facilitators of the social integration of people with intellectual disabilities. In these studies we were concerned with volunteers without intellectual disabilities, who had no biological relationship with a person with an intellectual disability, or to the people with intellectual disabilities who lived in the same home.

Study 1

Method

Research setting

This research took place at several locations belonging to a large organisation that supported some 1500 people with intellectual disabilities in the northern Netherlands. The organisation provided assistance – ranging from support on demand to intensive support – to people living in community houses and residential facilities. To ensure representative coverage, the study included three different types of settings: a residential facility; a reversed integration facility; and community houses in a neighbourhood. There were about 500 clients living in these three participating settings

The residential facility comprised 24 homes and 8 day-service settings. The majority of people with intellectual disabilities in this facility had severe to profound intellectual disabilities, or intellectual disabilities and behavioural or psychiatric problems, or both. In the reversed integration facility, a residential facility had been transformed into a neighbourhood where people without intellectual disabilities chose to live alongside people with intellectual disabilities (Venema, Vlaskamp, & Otten, Citation2016b). This setting included 21 homes for people with intellectual disabilities and 5 day-service settings. The majority of people with intellectual disabilities living in the reversed integration neighbourhood had severe to profound intellectual disabilities or intellectual disabilities and behavioural and or psychiatric problems, or both. Twenty-one of the community houses in regular neighbourhoods within the organisation took part in the study, as well as 7 day-service settings. Most of the people with intellectual disabilities living in these settings had mild or moderate intellectual disabilities.

Participants

Support workers

In all, 86 of the support workers in this organisation participated in Study 1. They had all completed four years of training at intermediate-level vocational educationFootnote1 in how to support people with intellectual disabilities and their professional responsibility was to support their clients in their daily activities. Some worked in residential facilities for people with intellectual disabilities, while others worked in day service settings, and they were given opportunities to take courses specific to the target groups they supported, such as the use of medication or how to deal with aggressive behaviour.

Volunteers

A total of 238 volunteers, mainly women of an average age of 55 years, were involved in providing support to the people with intellectual disabilities who lived in the 3 settings included in the study. Most of these volunteers did not have a family member with an intellectual disability. The majority were not in paid employment or they had retired and their motivation for undertaking volunteer work was primarily altruistic (Venema, Vlaskamp, & Otten, Citation2016a).

Recruitment of volunteers was demand-orientated (they were recruited in response to specific demands) and they did not receive any training when they started work. Although volunteers were considered important within the organisation, there was no clear definition of their roles, and their tasks at the participating locations were primarily chosen by the support workers themselves (Venema et al., Citation2016a). One support worker was responsible for coordinating volunteer work at each of the locations.

Inventory and procedure

The study was given ethics approval by the ethics committee of the University of Groningen and the internal committee of the care organisation. Moreover, the researcher was independent and not from within the organisation. The study was funded by the University of Groningen and the participating care organisation. The organisation provided staff contact information to the researchers. The researcher travelled to all participating locations to ask the support workers responsible for volunteer work about the volunteer work at their particular locations. Support workers were also asked to complete an inventory designed to record the number of volunteers at the location; their tasks; and to indicate the severity of intellectual disability and the degree of behavioural or psychiatric problems of people with intellectual disabilities supported by a volunteer at that time.

Analysis

To categorise the tasks of volunteers, we distinguished type and location of activities and tasks, using a classification system developed in a previous study (Venema et al., Citation2016a), which distinguished between recreational activities and other tasks (e.g., care tasks and transport), and then categorised recreational activities by the location where they took place; at the clients’ residence, in the immediate vicinity of the residence, and outside the neighbourhood.

For the current study, we made two adjustments. In order to distinguish between activities where people with and without intellectual disabilities could meet, and activities where people with intellectual disabilities mainly encountered others with intellectual disabilities, we added the category “group activities organised for people with intellectual disabilities.” The category of “other tasks” (originally broken down into “other tasks, dedicated to a specific client” and “other tasks not dedicated to a specific client”) was changed to “other tasks that are performed outside the facility” and “other tasks that are performed inside the residence.” The percentage of volunteers involved in each category and subcategory of activity was calculated, as well as the target group with whom they worked (people with mild intellectual disabilities; moderate intellectual disabilities; severe intellectual disabilities; profound intellectual and multiple disabilities; and those with intellectual disabilities and behavioural or psychiatric problems, or both). Differences among the target groups were measured using a Chi-square test.

Results

Actual volunteer tasks

Most of the volunteers had been involved in group activities organised by the organisation for people with intellectual disabilities (see ). Almost a third of the volunteers also assisted in sporting activities.

Table 1. Percentage of volunteers who executed the tasks or activities.

Differences in tasks and activities were found among the target groups. Volunteers for people with profound intellectual and multiple disabilities assisted primarily with sporting activities, while volunteers for people with intellectual disabilities and behavioural or psychiatric problems, or both, mainly performed other indoor tasks, such as cleaning and odd jobs.

Conclusion

Results of the exploratory research in Study 1 demonstrated that volunteers were already playing an important role in the physical integration of people with intellectual disabilities; and that the majority of volunteers assisted with activities in the community. Nevertheless, the most frequently cited task overall was “helping with group activities organised by the organisation for people with intellectual disabilities.” Typically, people with intellectual disabilities did not meet many neighbours without intellectual disabilities during these activities; they mainly had an opportunity to interact with other people with intellectual disabilities.

Study 2

Method

Participants and setting

All support workers at the participating locations were invited to take part in Study 2. Of the 894 questionnaires distributed to support workers, 235 were completed and returned (a response rate of 26.3%). We can only speculate as to the reasons for this rather low response rate. Possibly, filling in a questionnaire on volunteer work was not afforded high priority, given the typically heavy workload for volunteers. As shows, most of the support workers who participated in Study 2 were women, with an average age of 45 years. Most worked with more than one of the specific groups included in the study. The majority of these support workers (75%) had been working with people with intellectual disabilities for over 10 years.

Table 2. Characteristics of the participating direct support workers.

Inventory and procedure

Results obtained from the inventory of participating settings formed the starting point for the development of a questionnaire. Fifteen support workers were subsequently interviewed about the tasks that volunteers performed. They were invited to note additional activities that they felt were suitable for volunteers. Once the questionnaire had been developed, a draft version was pilot-tested with a small group of support workers (n = 10). These support workers were positive about the questionnaire's content and the time it took to complete it. They did not suggest any modifications.

The first part of the questionnaire was designed to capture demographic data, and included questions about support worker characteristics (gender, age, work location, work location target groups, and years of work experience). Support workers were then randomly assigned to one of the target groups they worked with. For that specific target group, they answered questions about the tasks that they thought volunteers could cover. These tasks were divided into sporting tasks, tasks at the work location, outings, and other tasks. There were 6 sporting tasks (e.g., walking and cycling), 14 tasks at the work location (e.g., sharing coffee, cooking and baking), and 10 types of outings (e.g., going to church or the cinema). The “other” category contained eight tasks (e.g., cleaning and buying clothes). The task list was the same for all target groups, and support workers were asked to rate each task on a 5-point scale in terms of its suitability for volunteers (ranging from 1 = completely unsuitable to 5 = completely suitable).

The questionnaire, which was created using the Qualtrics software package, was distributed to support workers by email. They could open the questionnaire by clicking on a link and they were given four weeks to complete it, which had to be done online. All support workers were sent a reminder after two weeks, and after three weeks they received a further reminder by email from the care organisation director.

Analysis

To analyse the tasks, the mean was calculated for all tasks. For each target group, tasks were then ranked from most suitable to least suitable, based on the mean. This generated a list of the 10 most suitable and 10 least suitable tasks for each target group.

Results

Suitable volunteer tasks

lists the 10 most suitable tasks for volunteers according to support workers. This list shows many similarities between the target groups, with five tasks in particular being highlighted as suitable for almost all target groups. However, support workers who worked with people with intellectual disabilities and behavioural or psychiatric problems assigned lower scores on these tasks, rating only nine as suitable for volunteers working with this target group.

Table 3. Ten most suitable tasks for volunteers for every target group.

Similarities are also apparent in respect of the 10 tasks that support workers deemed least suitable for volunteers, with 6 tasks in particular being selected as suitable for almost all target groups (see ). Of the 10 listed tasks, only 2 to 4 were not regarded as suitable for the target groups, apart from the group of people with intellectual disabilities and behavioural or psychiatric problems.

Table 4. Ten least suitable tasks for volunteers for every target group.

Physical integration of people with intellectual disabilities

Half of the tasks listed in the questionnaire were community-based tasks or activities. The 10 most suitable tasks included 5 that enhanced physical integration, since they were performed in the community. Two of these tasks were cited for the group of people with mild intellectual disabilities, two for the group with moderate intellectual disabilities, one for the group with severe intellectual disabilities, and two for the group with profound intellectual and multiple disabilities. For the group of people with intellectual disabilities and behavioural or psychiatric problems, there were no community-based tasks included in the top 10 tasks. The 10 least suitable tasks for volunteers included those that enhanced physical integration, such as swimming, shopping, or accompanying clients to the dentist, doctor, or hospital. Four tasks were mentioned for people with mild intellectual disabilities, five for those with moderate intellectual disabilities, seven for those with severe intellectual disabilities and profound intellectual and multiple disabilities, and eight for those with intellectual disabilities and behavioural or psychiatric problems, or both. Considering all the tasks that could enhance physical integration across all target groups, this provided a distribution of 9 tasks in the 10 most suitable tasks, and 31 in the 10 least suitable tasks.

Discussion

The aim of these two studies was to investigate the role of volunteers in enhancing the physical integration of people with intellectual disabilities. Overall, results highlighted the fact that volunteers were already playing a role in this first step towards social integration, but that support workers believed that volunteers should not play a role in the physical integration of people with intellectual disabilities. There are several possible explanations for this discrepancy between what volunteers actually did and what was perceived by support workers as being appropriate. First, support workers may have had negative experiences with volunteers taking clients into the community. They may also have anticipated negative experiences because they felt highly responsible for their clients’ safety (Venema et al., Citation2016b). Second, support workers may have believed that volunteers should primarily play an assisting role in activities for people with intellectual disabilities, rather than taking the lead in initiating new activities. This tended to be confirmed by the fact that assistance to support workers during group activities was mainly provided by volunteers. A third explanation could be the lack of training of volunteers before they started work. Studies by Stancliffe et al. (Citation2015) and Bigby and Craig (Citation2016) showed that volunteers who received training in coaching and in accompanying individuals with intellectual disabilities in the community supported the individual with an intellectual disability in becoming more socially integrated. Unfortunately, the volunteers in our study did not receive any specific training during their voluntary work. More generally, the discrepancy between the actual tasks and what was perceived as appropriate most likely stemmed from the lack of a clear policy on the role of volunteers. When organisations that support people with intellectual disabilities are vague about what they expect from volunteers, it is unlikely that volunteers will play a role in physical and social integration (Venema et al., Citation2016a).

Another finding was that level of intellectual disabilities did not affect support workers’ perceptions of which tasks were suitable for volunteers to support clients’ physical integration. The complexity of the problems and the absence of verbal communication did not seem to be a barrier for volunteers when it came to performing community-based tasks. Even superficial contacts with strangers may contribute to people with intellectual disabilities feeling recognised, may enable them to enjoy conviviality, and may impart a sense of belonging (Bigby & Wiesel, Citation2015). People with intellectual disabilities and behavioural or psychiatric problems, or both, are an exception here as they have been found to derive very little benefit from the presence of others, such as volunteers, for their physical integration (Felce, & Emerson, Citation2001; Mansell, Citation2006; Van Alphen, Dijker, Bos, Borne, & Curfs, Citation2012). These results could possibly be explained by the attitude of support workers who may have preferred not to rely on the support of volunteers – an attitude that could have impeded the physical and social integration of people with intellectual disabilities and behavioural or psychiatric problems, or both (Venema et al., Citation2016a).

Limitations

Our research was not without limitations. There was a possible selection bias in the questionnaire, which may only have been completed by support workers who were either very positive or very negative about the work of volunteers. Second, the study was conducted in only one part of the Netherlands. Replicating the study in other parts of the country would make our findings more generalisable. At the same time, we stress that our sample comprised a substantial number of participants working with people with very different levels of intellectual disabilities. Therefore, when it comes to various levels of intellectual disabilities, our study results have provided a sound basis for understanding the current and potential roles of volunteers in facilitating the social integration of people with intellectual disabilities.

Finally, our current research only investigated whether volunteers played a role in physical integration by helping their clients to be present in social environments that predominantly included people without intellectual disabilities. We did not investigate whether or not the co-presence of people with and without intellectual disabilities did in fact initiate further social interaction between these two groups. Although our research has yielded valuable knowledge about the first step in the integration process for people with intellectual disabilities, considerably more research is needed. Future studies should focus on the degree of direct contact that results from the physical integration of people with intellectual disabilities in regular social environments. More research on volunteerism in the support of people with intellectual disabilities is needed to gain a better understanding of the tasks they could potentially fulfil, the quality of the support they could provide, and of their relationships with the people with intellectual disabilities whom they support.

Implications

In our view, a number of practical implications can be derived from our studies. First, organisations for people with intellectual disabilities should explicitly state what they expect from volunteers, especially regarding their role in physical integration. To ensure that their role goes beyond mere assistance, training could be provided to teach volunteers how to facilitate physical and social integration; for example, the Active Mentoring training (Stancliffe et al., Citation2015; Wilson et al., Citation2013). Second, organisations need to be aware of the sceptical or even negative attitudes of many direct support workers towards volunteer work. Organisations should listen to support workers to gain a clearer picture of the obstacles they experience in working with volunteers. They could then work together to develop solutions to these perceived problems. More generally, organisations should invest more in recruiting and supporting volunteers. It is also essential that support workers be made aware of their role in facilitating volunteer work, and especially in making optimal use of volunteers in the social integration of people with intellectual disabilities. If support workers only ask volunteers to perform activities with people with intellectual disabilities at their clients’ residence, the volunteers’ role in the social integration process will remain minimal. Therefore, volunteer work in the support of people with intellectual disabilities needs to develop into a partnership between support workers and volunteers. What is needed first is training, where volunteers are properly prepared to undertake the tasks they will be expected to perform, and to understand the implications of their involvement with people with intellectual disabilities. While this training should stress the importance of assisting with physical integration, support workers should continue to be responsible for monitoring and supporting the execution of these activities.

Conclusion

Support workers who participated in these two studies believed that volunteers should support activities inside the residence of people with intellectual disabilities and should perform general supportive tasks in which people with intellectual disabilities were not involved, such as cleaning and doing odd jobs. Enhancing physical integration was not considered by support workers to be a practical role for volunteers. No relationship was found between the level of an intellectual disability and possible volunteer tasks. However, support workers believed that volunteer work with people with intellectual disabilities and behavioural or psychiatric problems, or both, was not possible.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1. In Australia, this is broadly equivalent to a TAFE (Technical and Further Education) Certificate IV course.

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