Involvement in productivity roles such as work, volunteerism, and personal projects plays a central role in the lives of most adults and is associated with enhanced physical and mental health. This study examined the meaning of productivity to adults with intellectual disabilities, their satisfaction with the roles they held, and contributors and barriers to achieving satisfying productivity outcomes. The results suggest a number of key areas to address in future research and practice, including systemic and social barriers to choice and meaningful participation.
Participation in paid work and other productivity roles is an expectation for most adults. For people with intellectual disabilities, numerous challenges exist to securing satisfying and successful work roles. Although several studies have examined employer perspectives on employing workers with intellectual disabilities (Blessing & Jamieson, 1999; Cooper, 1991; Morgan & Alexander, 2005; Nietupski, Hamre-Nietupski, VanderHart, & Fishback, 1996; Rimmerman, 1998), the factors that contribute to achieving satisfying productivity roles from the perspective of the worker require greater attention, as do the systemic and individual challenges to achieving choice and self-determination.
Productivity and Meaning
Productivity is defined as engagement in activities that contribute to “economic preservation, home and family maintenance, and service or personal development” (McColl, 2003, p. 2). Although productivity has traditionally been linked to paid employment, it can include a full range of activities that involve commitment and social contribution, including volunteerism, homemaking, and personal projects. The urge to be productive has been described as a central and innate element of human existence (Pierce, 2003; Wilcock, 1998). Productive engagement has also been cited as a major contributor to health (Cynkin & Robinson, 1990; Raphael, 2006; Wilcock, 1998). Beyond the benefits associated with higher incomes, including better housing and health outcomes and enhanced social voice, employment has been reported to improve mental health and self-esteem (Waddell & Burton, 2006). Numerous studies in economics and psychology have shown that unemployment leads to a decrease in mental health and self-esteem (Clark, 1994; Goldsmith, Veum, & Darity, 1996; Jahoda, 1982; Shields & Price, 2005; Theodossiou, 1998). Researchers have acknowledged that unemployment is a more serious threat to mental health than is physical disability or illness (Winkelmann & Winkelmann, 1997). Productive activity, which includes but is not limited to employment, is seen as a buffer against emotional distress (Warr, 1987).
Employment may be especially beneficial for persons who have been socially marginalized due to minority-group status and who, in the past, may have been excluded from desirable roles (Schur, 2002). In her review of U.S. household surveys, Schur found that although people with disabilities who are employed have less time to participate in community activities than their counterparts who are not employed, they do so more frequently. In focus-group sessions with people with disabilities and their families, Freedman (1996) found that for both consumers and their families, increased activity levels and self-esteem were important job outcomes.
Work Participation of People With Intellectual Disability
Work plays a central role in the lives of many persons with intellectual disabilities, and studies of supported workers have shown that these employees desire paid employment to the same degree as young adults without disabilities (Cordes & Howard, 2005; Ferrari, Nota, & Soresi, 2008; Griffin, 1996; Reid & Bray, 1997). Statistics concerning employment rates of people with intellectual disabilities are unreliable at best, failing to indicate what proportion of those desiring employment are working or what is considered to be paid work; however, at least 9%–40% of people with intellectual disabilities in the United Kingdom, United States, and Canada are employed for pay (Olney & Kennedy, 2001; Roeher Institute, 2004; Rose, Saunders, Hensel, & Kroese, 2005; Yamaki & Fujiura, 2002). Many young adults with intellectual disabilities engage in volunteer work or a combination of paid and unpaid work (Baladin, Llewellyn, Dew, Ballin, & Schneider, 2006; Salkever, 2000). This choice may be secondary to concerns about loss of disability payments but may also relate to availability of paid work opportunities, skill levels, transportation, and other factors. Little research has considered the motivations and value of unpaid work for people with intellectual disabilities.
For people with intellectual disabilities, community, as opposed to sheltered employment, results in greater integration in society and may result in a greater feeling of social belonging. Integrated work may also lead to an increased feeling of empowerment, particularly for those individuals who have higher functional work ability (Kober & Eggleton, 2005; Reid & Bray, 1997). One study from India showed that working in community employment increases independent living and self-advocacy skills (Sharma, Singh, & Kutty, 2006). Quality of life is significantly greater for individuals with an intellectual disability who are employed compared with those who are not employed (Eggleton, Robertson, Ryan, & Kober, 1999). Although most workers with intellectual disabilities report being satisfied with their jobs (Jiranek & Kirby, 1990; Melchiori & Church, 1997), some psychological risks exist with integrated employment. One study (Petrovsky & Gleeson, 1997) revealed that workers with intellectual disabilities felt lonely and excluded when stigma was perceived to be high and inclusion low. Psychological well being, measured in terms of self-esteem, can also be challenged in some workers with intellectual disabilities, in part due to the opportunity for social comparisons with higher functioning coworkers (Jiranek & Kirby, 1990). A study that compared the importance of various work reinforcers for workers with intellectual disabilities with workers in similar positions who did not have disabilities revealed a higher need for recognition in workers with intellectual disabilities, whereas workers without disabilities had a significantly higher need for achievement, creativity, and quality supervision (Melchiori & Church, 1997).
Unpaid work holds many of the demands and rewards of paid work but often lacks the respect and social acceptance of competitive work roles (Pierce, 2003). A number of intrinsic psychological functions have been identified as underlying the motivation to volunteer. Volunteerism is driven by personal values (e.g., compassion for others, a belief in the importance of altruism), career goals (e.g., opportunity to try a new type of work, make contacts), social needs (e.g., spending time with friends and loved ones, supporting a cause important to a loved one), opportunity for learning (e.g., building understanding of personal strengths and weaknesses, allowing one to try new things, learning about a cause), enhancement of ego functions (through contributions to self-esteem, making new friends, feeling needed), and self-protection (e.g., avoiding loneliness, overcoming feelings of guilt in one's good fortune; Clary et al., 1998). Many other extraneous factors encourage continued volunteerism, including tangible rewards, such as complimentary access to services, gifts, food, and so forth; public and/or personal recognition; social events; plaques; opportunity for advancement; and continued training (McClintock, 2004). Unpaid work can provide rewards for participation, but the relationship between volunteering and improvements in an individual's well being has been less clearly explained. People who experience the greatest increase in feelings of well being derived from volunteering often have higher than average educational, economic, and personal resources to share (Thoits, 2001). People with fewer resources may be unable to derive adequate benefits from unpaid labor.
Work without pay is seen as a viable productive role for persons with intellectual disability (Baladin, Llewellyn, Dew, Ballin, & Schneider, 2006; Li, Liu, & Lee, 2006). One Australian study on volunteerism (Baladin et al., 2006) reported that half of their participants with various developmental disabilities had worked as volunteers and saw the jobs as (a) providing avenues for social contacts, (b) providing opportunities for later paid work, and (c) enhancing their self-esteem and social inclusion. Another Australian study that involved primarily participants who were employed in sheltered workshops found that most participants had a limited understanding of volunteerism, none held volunteer positions, and 20% saw volunteering as something they might consider in retirement (Cordes & Howard, 2005). These contrasting results suggest that volunteerism may serve as an alternative means of productive engagement primarily for those who lack regular paid employment.
Choice, Opportunity, and Needs Satisfaction
Career choice is a major task of young adulthood and happens through a variety of mechanisms. A wide variety of career development theories have been posited over the past 50–60 years that describe the means by which job and career choices are made. Osipow (1990) suggested that the existing theories could be classified into four major categories: developmental, which look at progressive stages of career decision making; trait oriented, which consider the match between worker traits and work environments; reinforcement based, arising primarily from social learning theory; and personality based. Chen (2003) observed that theories are typically based in positivistic approaches that involve matching of traits with environmental factors, or are social constructivist, meaning that career development emerges over time as an intentional process mediated by individual perspectives and situational opportunity. The latter themes suggest the need for insight into the self, work, and the social order that constrains and facilitates success. Choice is clearly a complex phenomenon that may present challenges for persons with intellectual disability based on the level of cognitive challenge involved and the multitude of factors influencing the evolution of self-knowledge.
This study explored key questions concerning time-use preferences of people with intellectual disability, including the following:
What is the meaning of work to people with intellectual disability? What are seen as the most important rewards associated with productivity roles?
What barriers exist to identifying and securing satisfying productivity roles?
In what ways do the perceived benefits of unpaid work differ from paid work? Are these roles equally satisfying?
What roles do choice and self-determination play in the selection of productive activities?
The study was conducted in the southeast region of the province of Ontario in Canada. Participants were recruited through agencies that provide employment and day programs for adults with intellectual disability. Eligibility included the presence of an intellectual disability, being of working age (18–65 years), and being capable of verbal communication with or without assistance. Participants were included if they were involved in at least one productive work role in the community, either paid or unpaid, within the previous 3 months. Paid employment was defined as working at minimum wage in a competitive environment. Unpaid employment included work in community agencies for which no pay was received. Several unpaid participants were involved in adult day programs and performed their voluntary work as a component of that program. All participants were capable of providing their own consent. A total of 25 individuals participated in the study, some who held paid work roles, some who held unpaid roles, and others who held both. All participants were Caucasian, representing the predominant culture of this racially homogeneous region.
The qualitative study design involved interviews with participants concerning their productive involvements. Interviews were conducted one on one in a community agency or the participant's home by research assistants who had been oriented to the goals of the study and to the interview guides. Interviewers had previous exposure to individuals with special needs and were trained in ethically appropriate and population-sensitive approaches. Six participants had a support person present at their own choice or because (in the opinion of the support agency or parent) support during the interview would lead to better communication. Questioning followed a semistructured interview guide. Interviewers explored key concepts relative to the research questions but were encouraged to pursue emerging concepts relevant to the research questions that were raised by the respondent during the interview and to present the discussion item in a manner that was comprehensible to the interviewee. Interviewers were cautioned against providing single examples that might lead the participant to a particular response and were encouraged to elicit depth and clarification of responses by probing and restating questions, rather than offering suggestions. The interview guide addressed preferred aspects of the productive involvement(s), dislikes, ideal work–volunteer roles, method and degree of choice in selection of the current involvements, the value of the involvement, and the meaning of work and pay. Interviews ranged from 20–74 min with an average length of 38 min. All interviews were digitally recorded and later transcribed. Interviewers transcribed their own notes and documented their own reflections on the interview.
Analysis involved open and axial coding of interview transcripts through an iterative process. The first author (R. L.) reviewed and coded the interviews for initial themes relative to the research questions. This list of codes and their descriptions were challenged and revised through an extensive peer-review process involving the second (H. O.-K.) and third (C. M.) authors. Subsequent analysis also examined these themes across employment situations (i.e., paid vs. unpaid) to refine themes and examine any cases of variation or similarity between the paid and unpaid workers.
Participants were 15 men and 10 women who ranged in ages from 21 to 55 years (see Table 1). The majority reported more than one outside productive involvement, and many were involved in both paid and unpaid work (see Table 2). Several also reported a number of recreational or sports involvements that they pursued. There was remarkable similarity between the job titles of the paid and volunteer positions. These titles are presented in Table 3. Both paid and unpaid jobs were heavily weighted in the sales and service sector but also included work in manufacturing, clerical, and landscaping positions. It is notable that the number of volunteer hours worked was considerably lower than the number of paid work hours, even for workers who held no paid work. (those who did volunteer work only averaged 4.9 hr/week). In practical terms, although the job titles for volunteer jobs mirrored those of paid jobs, the descriptions of the jobs provided by workers in some cases reflected lower levels of responsibility.
Meaning of Work
Respondents discussed their motivation for working and the meaning they derived from participation. A common theme for both paid and unpaid work was social recognition and connection. Productivity roles provided a means for integrating into the community and socially connecting with other people. A paid worker stated that something she liked about work was that “all the kids know me.” One volunteer worker stated that he could not leave his volunteer job even if he found paid work because “all my friends there love me.” Another volunteer worker (Participant no. 42) described the value of social recognition:
Interviewer: What do you get when you do a job properly?
Participant: You get a good reward.
Interviewer: What kind of reward?
Participant: A handshake.
Interviewer: How does that make you feel?
Participant: Very … very proud!
Several workers indicated that they enjoyed being part of a work group, and that the camaraderie of a congenial group of coworkers made going to work “fun.” One volunteer worker who was only marginally happy with his work tasks indicated that he wished to stay at his present volunteer job because “people there understand me.” The value of social recognition and social comfort was reinforced by the finding that 2 of the participants who indicated lack of satisfaction at work stated that they did not like people in the work area, as in this worker (Participant no. 21):
Participant: Some of the employees are nice who I work with. Some aren't.
Interviewer: How do you feel about the employees who aren't so nice?
Participant: I don't talk to them as much. I only just talk to the ones who I know very well.
A second factor that emerged as an intrinsic motivator of work for both paid and unpaid jobs was the sense of pride and satisfaction that emerged when workers felt competent in performing their work tasks. This sense seemed connected to a sense of self-identity (i.e., “knowing what I am good at”) and positive self-esteem (i.e., feeling important by virtue of a unique contribution). One interviewee worked as a volunteer at a museum and took pride in playing the role of the costumed mascot. A paid worker talked with pride about how she was able to control the rowdy children in the play area of the fast food restaurant where she had been employed for some time. A hospital volunteer stated that she was the only one in the work area who knew sign language and told the story of how she had helped out once when a hearing-impaired patient needed help.
A large number of the respondents talked about work as a way to stay busy and to advance themselves through new learning. Frequent responses to the question “Why do you work?” included “to stay out of trouble” and “so I don't get bored.” One participant stated, “I don't have anything else to do.” Indeed, for many of the participants, it seemed that their schedules had been arranged to ensure some type of paid or volunteer engagement each weekday. Many paid workers said they were also doing volunteer work because the disability support system would allow them to work only a certain number of paid hours before support payments would be reduced. Doing volunteer work allowed them to remain productive throughout the week without compromising their disability benefit eligibility. Several of the workers acknowledged the personal benefits they gained through skill development. For many volunteer workers who lacked paid employment, this seemed to be a primary motivator.
Extrinsic factors were also perceived as important aspects of work for most interviewees. Almost every participant, both paid and volunteer, responded that money was the main reason most people work. The majority indicated that this was a factor for them personally as well. Several paid employees described the instrumental value of money, in terms of being able to support themselves or buy “extras” that would not be possible with the disability pension alone. Some also described pay as a means of legitimizing their worth and contributions. One worker who felt that people with intellectual disability get low-status, low-pay jobs linked the low pay to social worth: “People go, oh at least you got a job, it's like, yeah, I know, but how, you wouldn't be so straight faced if somebody said okay, you're not getting a pay raise for the next 12 years. But that's what we've been faced with” (Participant no. 6).
Most volunteer workers indicated that they would prefer to be paid, and many saw the volunteer job, often obtained through a day program, as a stepping stone to paid employment in the future. A number of extrinsic rewards other than pay were described by volunteer workers, including food, parties, the ability to choose books to read (library volunteer), and gift cards. One volunteer for a local hockey team described a range of extrinsic rewards and the sense that these provided some type of social exchange or fairness:
Again, it keeps me out of trouble…And you don't have to pay to get in, you get to travel with the team. There's usually a year-end party. When they have money, you can get some nice stuff as a thank you. It more than works out in the long run. (Participant no. 6)
Barriers to Participation and Satisfaction
Transportation, health concerns, and financial disincentives were identified as challenges to participation. These factors limited options for productive engagement or limited the number of hours of participation. For example, for many participants, transportation was a significant factor that dictated when and where they could work. Some participants were limited to paid or voluntary work at locations and times that a family member or staff person was able or willing to drive them. Others were dependent on the availability of an accessible community bus or day-program van. One worker who reported typical concerns stated,
I almost lost this job at first.…Our ride wasn't bringing me on time and this happened like three, four weeks until I finally got [job coach] to talk to him and I talked to him and say look, it's nice that you're driving me, but I can't be arriving at the door at 7 o'clock. (Participant no. 8)
Health concerns that were described related directly to work that had been attempted in the past and found untenable. One participant reported catching frequent colds when working in a freezer. Another described getting eczema when she worked more than 2 days per week. Others reported fears about work that they related to health risks, such as a library worker who was concerned about catching germs from people who had handled the books she sorted and another who was uncomfortable traveling in elevators.
A final factor that limited participation in paid work was perceptions about the disability pension rules (and the complexity of the retrospective model for determining overpayments when worker hours exceed allowable hours). Although the Province of Ontario, Canada, has recently modified the benefit program to allow retention of 50% of all earned income by recipients, these workers were unaware of changes and believed that the government would start to take away their money and potentially exclude them from the program if they exceeded that limit (per the previous policy). One participant who had limited language skills named the drug and health benefits associated with the disability pension as the first reason she could not work more hours. Several paid workers indicated that they could or would not work more hours for this reason, some supplementing their paid work hours with volunteer work.
One factor that limited participation was perceived skill shortages. One worker described his frustration at not being able to get a better job:
I have two sisters—they're normal. And I'm trying to say to myself, why are they living there, and why am I here?…I mean, I know that I only have entry level math, I know I have trouble with writing and my speech is not so good sometimes, but the first mistake I do in [on the job] I'm back here. (Participant no. 14)
Some volunteers persisted in their positions because they were not able to qualify for a paid job. One volunteer stated,
Participant: You have to do a lot more harder things to get a paid job.
Interviewer: OK, so you think you have to do harder things to get paid than what you do at the volunteer job?
Participant: Yes. (Participant no. 41)
Some factors reduced work satisfaction without necessarily limiting participation, one of which included lack of pay for some volunteers, mostly those who held only volunteer jobs. Several of these volunteers saw a lack of pay as something they needed to accept while they were building work experience and were willing to work for free until they could secure a paid job.
Interviewer: Why do you continue volunteering here? Do you want to continue volunteering here?
Participant: Yes, I do.
Interviewer: How long do you see yourself staying here?
Participant: Well, until I get a paying job. (Participant no. 42)
Some paid workers indicated there were aspects of the work itself that they did not like, such as working with garbage, working outdoors in inclement weather, and work that they found too physically demanding. Two paid workers reported being bored with their jobs. All workers persisted with their jobs despite their dissatisfaction. In some cases, this seemed to relate to the sense that they had few alternatives. One stated, “If I got a job anywhere else, I wouldn't be working here” (Participant no. 16).
Individual Choice and Productivity Roles
Participants were asked how they had found the position(s) they held and how well each involvement matched their personal goals. A number of respondents indicated that the position had been secured by an agency staff person, parent, or, in 1 case, had been a high school work placement secured by the teacher. In only 3 cases was there evidence that the worker and/or a family member had proactively approached a company to identify a job.
It was difficult in most interviews to determine the level of choice the individual had exercised in the placement process. For example, in one interview, which was attended by the staff person, this exchange took place:
Interviewer: How did you find this volunteer job?…Your counselor helped? And who decided that this kind of job?
Participant: She's always the one that decides my jobs.
Staff: Do I decide or do I leave it up to you?
Participant: You leave it up to me.
Staff: I give you the information; you make the decision.
Staff: I don't make you do anything! [laughs]
Interviewer: And, uh, is this the kind of job you thought you always wanted to do?
Participant: All those jobs are what I wanted to do. (Participant no. 44)
Another volunteer worker demonstrated the passivity that was evident in many interviews:
Interviewer: How did you find this volunteer job?
Participant: Oh, ho, you're going to have to ask [worker name]. Either through the paper or my mom heard about it. But I'm not sure. (Participant no. 42)
In discussing “dream jobs,” it became evident that most participants had a very limited notion of potential job options. A large proportion responded that they could not imagine doing something other than what they were doing presently, and they were unable to name alternate jobs of interest. One participant described having been very proactive in asking his counselor to find him jobs in certain locations, all retail or movie outlets that were new in town and that were of personal interest to him. Although most interviewees indicated that they enjoyed their work, several indicated that they had few options in terms of their involvements and few expectations for change. One participant described frustration with his job as a cart collector for a grocery store, knowing that the employer and job placement worker were putting off promoting him to a job inside the store. He felt “stuck” and said he could not progress to a more desirable job because he lacked skills. Another participant indicated awareness of his personal limitations, and how it limited career options:
Interviewer: What stops you from working more now?
Participant: Well, more again, my disability. I can't do speed. Like I can do stuff, maybe not quite as well as the next guy, but certainly not as fast.…Everything today is so quick. Like, if you have to do 8 skids a day, maybe I could do 5. It's not all that much difference, but it's enough to make a difference. (Participant no. 6)
Adults with intellectual disabilities in this study described a range of extrinsic (i.e., pay, benefits, opportunities for advancement) and intrinsic (i.e., enjoyment of the work itself, self development) motivators for work, a pattern similar to what is seen in samples of workers and volunteers without disabilities. For many, staying busy and connected to others in the community were significant outcomes of productivity and, next to pay, the most cited reasons for working. This is consistent with one Italian study that found that, compared with youth without disabilities, workers with intellectual disabilities were more motivated by social connections and enjoyment of the work than were their peers who were nondisabled (Ferrari, Nota, & Soresi, 2008).
Overall, there appeared to be little distinction between the paid and unpaid workers in terms of work satisfaction. For a subset of workers, payment was a significant incentive. Functional benefits of pay were motivators for many, and receiving even minimum wage was emblematic of social status and personal success. The true impact of disability benefits on work motivation was difficult to discern in this sample, as many of the workers appeared to have little understanding of current pension rules. It is clear, however, that the perception existed that disability benefits would be lost if workers exceeded a base number of work hours, and this belief limited work participation for many. Because most individuals could likely derive increased financial gain from working more hours (Ministry of Community and Social Services, 2007), education may help reduce misperceptions. Beyond payment factors, it appears that personal expectations with respect to work capacity were shaped by family, counselors, and teachers. Additional study is required to determine if support persons for workers with intellectual disabilities hold realistic or overly protectionist views of work capacity.
Career choice for both paid and unpaid workers followed social learning or social systems models, both of which attribute career selection largely to situational factors. Social systems theorists posit that factors such as chance opportunities, family expectations and involvements, and social status are seen by individuals with disabilities as far more influential than personal strengths, interests, and values (Osipow & Fitzgerald, 1996). This is in contrast to the psychological theories, which presume a large degree of personal agency in pursuing jobs that fit with individual attributes. The findings of this study suggest that persons with intellectual disabilities learn about jobs in a similar manner to many young adults, which is consistent with these socially based models. Many participants demonstrated limited knowledge of productivity options and had been steered toward their current involvements by staff in employment or residential programs. Dominance of parents and teachers in career planning has been documented in a U.S. study on the transition process, where students were found to be heavily influenced by such authority figures and often not given the time or tools to express their views, despite their nominal inclusion in the planning process (Thoma, Rogan, & Baker, 2001).
Many of the participants in this study described environmental factors leading to job choice, including transportation, hearing about a job because a family member or friend worked there, identifying job interests in new and appealing businesses in a small town, or being steered toward a job by a counselor or parent. There was limited evidence of a developmental process of career exploration, self-learning, and discovery, as articulated by Chen (2003). Whereas many typically developing young adults also rely on chance and other environmental determinants, rather than sound career planning, it is likely that their exposure to various career options is much broader and based on the size of their social networks, their opportunities for part-time employment, their free mobility in the community, and their broader skill sets. All of these factors contribute to a developmental process that builds work knowledge and experience. It is clear that youth with intellectual disabilities must be assisted toward informed and self-determined career choices. Guidelines for promoting self-determination in goal setting relative to employment and independent living have been provided elsewhere (e.g., Sowers, McLean, & Owens, 2002; Thoma, Rogan, & Baker, 2001; Wehmeyer, Garner, Yeager, Lawrence, & Davis, 2006) and suggest that support and guidance are required to actively engage youth in aspects of the process, ranging from identification of personal skills and interests to articulating goals in the context of transition planning with parents and educators. The results of our study provide evidence of the lack of self-directedness that can arise in the absence of systematic programming in this regard. Additional research is required to examine the reach and quality of directed programming in youth self-determination and institutional and social factors that may limit effective uptake and implementation.
More troubling with respect to choice is the suggestion, in some cases, that workers were persisting with jobs that they found boring or distasteful because of a sense that there was nothing else available to them. This was also true of some volunteer workers, who stated that they would leave their current position if they could find a job that paid. There is ample evidence in the literature that the majority of jobs held by workers with intellectual disability are low-status, service-industry jobs that might be considered undesirable by others in society (Fesko, Temilini, & Graham, 1995; Lysaght, Ouellette-Kuntz, & Buzinski, 2006; Mank, Chioffi, & Jensen, 1998; Yamaki & Fujiura, 2002). It has also been suggested that workers who lack flexibility, speed, and the ability to multitask are becoming less able to compete in the contemporary job market (Wilton, 2004). These factors combine to form a risk that workers with intellectual disabilities are being increasingly delegated to perform society's least desirable jobs and have little control over work outcomes. Although the quest for competence in work may suggest that the best job matches for many with intellectual disabilities will necessarily fall in the unskilled employment market, this factor ignores personal goals and preferences, reduces job options, and may result in low work satisfaction.
Last, the results of this study provide a number of insights into the role of volunteerism for this population. Although most participants reported they enjoyed their volunteer jobs, most saw volunteer work as a stepping stone to a paid job or a way to stay occupied during the time they were not gainfully employed. Thus, although the volunteer work was rewarding in itself, it also held some notion of secondary gain. This outcome is consistent with the literature on volunteerism for the general population (Clary et al., 1998). Results also suggested that, based on the number of hours worked and the descriptions of jobs, some of the volunteer jobs were less demanding and more flexible than the paid jobs, a view expressed by respondents in a study of adults with intellectual disabilities conducted by Baladin et al. (2006). In addition, because the mean age of the sample that worked only at volunteer jobs was only marginally less than the mean for paid workers, the notion of lack of training alone does not account for why these workers held nonpaid work. Therefore, the question is whether volunteerism is a choice not only for adults with intellectual disabilities who are engaged in a work-preparation phase but also for those who have fewer marketable skills. This study did not involve onsite observation of work performance, and, thus, the potential for volunteer workers to have secured paid rather than unpaid jobs is unknown. The role and value of volunteer work for people with intellectual disabilities should be further explored, as should the legitimacy of this outcome. Does long-term volunteer involvement for people with intellectual disabilities represent choice or of failure in the ability of our vocational preparation system and society to appropriately market and match these individuals to viable paid work roles?
The validity of interviews with persons with intellectual disabilities has numerous challenges. Some of these include the tendency of respondents to acquiesce or provide socially acceptable responses, memory problems, difficulties with question interpretation, difficulty abstracting or imagining alternate realities, and problems with self-expression (Finlay & Lyons, 2001). All of these concerns were encountered in the course of this study, and additional challenges were encountered when a staff person or family member assisted with the interview to help prompt the participant or interpret meaning. Sampling was limited to those who could verbally self-express in an effort to reduce errors in interpretation; however, this restriction limited the findings with respect to relevance for lower functioning, nonverbal individuals. In addition, depth of analysis was limited by our reluctance to draw certain conclusions from shorter, less elaborated responses, which were received from some participants. The difficulty with obtaining unbiased data through the interview process used in this study presents a challenge to the trustworthiness of results.
In addition, participants for this study were solicited through community service agencies; thus, persons who independently sought community productivity options were not part of the study. The sample also did not include several “high-functioning” individuals who had been contacted by the agencies and chose not to participate for reasons associated with social stigma (i.e., do not like to identify themselves as having a disability). The sample was drawn from a geographically limited area, and the results were, therefore, likely shaped by the educational and vocational placement practices as well as the labor market characteristics of that jurisdiction. Social issues (e.g., race and ethnicity, male–female roles, socioeconomic status) that may have had a different impact in other regions may not be represented in the results.
A final limitation relates to the inability to differentially interpret data in the light of participant levels of functioning. Diagnostic information was not available for those interviewed, including factors that might have revealed functional ability, such as intelligence testing scores or required levels of community support. Themes related to participation and choice could vary based on individual functional levels.
This research suggests a need for enhanced options for productive involvements for young adults with intellectual disabilities. An emphasis on skill development in prevocational programming will help build the range of options open to both paid and volunteer workers in their local communities. Perhaps more important, the results point to a need for stronger career awareness and vocational preparation programs in the school-to-work transition phase to enhance the readiness of young adults to make independent life choices. Efforts should also focus on the development of paid and voluntary positions in a range of nontraditional sectors. Education to improve the understanding of both persons with intellectual disabilities and those who assist them, in terms of disability support payment rules, may reduce associated disincentives.
Editor-in-Charge: Philip Ferguson
Rosemary Lysaght, PhD (firstname.lastname@example.org), Assistant Professor, Rehabilitation Therapy, Queen's University, South Eastern Ontario Community—University Research Alliance in Intellectual Disabilities, Kingston, Ontario, Canada, K7M 6E5. Hélène Ouellette-Kuntz, MSc, Associate Professor, Community Health and Epidemiology, Queen's University, South Eastern Ontario Community—University Research Alliance in Intellectual Disabilities. Carole Morrison, BA, Former Project Coordinator, South Eastern Ontario Community—University Research Alliance in Intellectual Disabilities.