Little is known about the factors that shape the employment-related decisions of individuals with intellectual and/or developmental disabilities. Findings from qualitative interviews with individuals, their family members, and employment-support professionals from four community rehabilitation providers throughout Massachusetts were reported. Recognizing the value of participatory action research, we also included a co-researcher with intellectual disability who participated in all facets of the research process. Findings revealed a collection of people and factors considered influential in employment-related decision-making. The family in the formative years, school-based staff and early employment experiences, the culture of the community rehabilitation providers, the job developer, and personal preferences all influenced participants' decisions. Through understanding these persuasive elements, we offer recommendations to those in the intellectual and developmental disabilities field to optimize employment choices and outcomes.
Although policy shifts over the past 20 years have signaled a commitment to integrated employment for individuals with intellectual disabilities, unemployment of this group continues as a pressing public policy concern. In fiscal year (FY) 2003, only 26% of individuals with intellectual and developmental disabilities supported by community rehabilitation providers worked in integrated jobs (Metzel, Boeltzig, Butterworth, Sulewski, & Gilmore, 2007). At the same time, participation in sheltered or facility-based employment and nonwork services has grown steadily for this group (Mank, 2003; Winsor & Butterworth, 2008).
As community rehabilitation providers continue to offer options from supported employment to sheltered employment, a significant critique of the service system is that it provides either no choice or no meaningful choices (Storey, 2006). Informed choice involves education about available resources and the opportunity to choose a preferred option. Wehmeyer (2005) suggested that the goal of self-determination is to enable individuals to “act volitionally, and to become causal agents in their lives, to make things happen” (p. 120, emphasis added).
In recent years, researchers have begun to focus on the decision-making capacities of people with intellectual disability, although research on self-determined behavior remains limited (Shogren, Wehmeyer, Buchanan, & Lopez, 2006). Much of the literature has shown that these individuals often have restricted opportunities for expressing self-determination because of limitations in communication and congregate work settings that curtail opportunities for choice and decision-making (Powers, 2005; Storey, 2006; Wehmeyer & Bolding, 2001).
As researchers consider choice-making among individuals with intellectual and developmental disabilities, the interaction with a host of critical players throughout their employment journeys must be considered. Research highlights the roles of family members, who often introduce the idea of employment and are sought out for advice (Ankeny, Wilkins, & Spain, 2009). Other family contributions include intentional career-related guidance and modeling of work values, especially during the transition years (Way & Rossmann, 1996). Families of individuals with intellectual and developmental disabilities also provide significant practical and moral support in maintaining competitive employment compared with families in other disability groups (Dixon & Reddacliff, 2001).
Along with families, school-based experiences are critical during the development of employment goals, although the support provided varies widely. For example, Trainor, Carter, Owens, and Swedeen (2008) found that special-education teachers reported no designated responsibility for helping transition-age students work toward their goals beyond academics. Employment-preparation for these students also appear limited to classroom settings rather than real-world work experiences (Guy, Sitlington, Larsen, & Frank, 2009). Finally, well-established transition-planning programs are rare (Rutkowski, Daston, Van Kuiken, & Riehle, 2006).
Because family, school, and employment-support systems and staff are critical during the employment journey, other factors, such as positive previous work experiences, supportive work environments, and social integration with coworkers, likely play a role as well (Carter & Ditchman, 2010; Novack & Rogan, 2010). These factors often come up against barriers, such as inaccessible transportation and perceived family concerns about safety and long-term placement of the individual (Migliore, Grossi, Mank, & Rigan, 2008).
This literature review suggests that individuals with intellectual and developmental disabilities continue to experience employment-related underachievement and limited opportunities to exercise choice about work-related concerns. Although family members, school-based staff, and adult-employment staff represent critical players in the employment journeys of individuals with intellectual and developmental disabilities, the quality and quantity of supports provided varies widely. Less evident is exactly how such critical players influence employment-related decision-making for individuals with intellectual and developmental disabilities, to what extent these individuals' preferences correspond to existing employment options, and how this influences their decision-making. We conducted this study to address these issues by answering the following research questions: (a) What factors influence the employment-related decision-making of individuals with intellectual and developmental disabilities? (b) To what extent do their preferences correspond to existing employment options and choices?
Our methodological goal was to fully involve an individual with intellectual and developmental disabilities as a researcher. Co-researcher is the term that we used to describe the individual with intellectual and developmental disabilities who was hired to work as a researcher on the project.
Recruiting the co-researcher
Participatory action research has been of increasing use to researchers and members of marginalized populations (Wallerstein & Duran, 2003). For this study we hired a co-researcher as a way of breaking down barriers between the researcher and participant and developing collaborative solutions to problems. Researchers have advocated that participatory action research be used to include individuals with intellectual and developmental disabilities who are often otherwise excluded from the research process (Prilleltensky & Nelson, 2002; Walmsley, 2001). Several studies have illustrated the involvement of people with intellectual disability in many facets of research, including collecting data (Knox, Mok, & Parmenter, 2000), conducting member checks, or making sure that the researchers “got it right” (Mactavish, Lutfiyya, & Mahon, 2000). Individuals with intellectual and developmental disabilities have also co-authored research articles (Townson et al., 2004) and self-advocacy resources (Ward & Townsley, 2005). Consideration of such literature clarified our rationale for the creation of a co-researcher position.
We first recruited the co-researcher so that she could participate in each subsequent step of the research process. We created a job description, which was advertised through professional networking at the Institute for Community Inclusion, the research organization. Applicants for the job were not required to have previous research experience, only an interest in working with a research mentor to learn about the research process. We recommended that applicants (a) have an interest in learning about how people find jobs, (b) have the desire to participate as a member of a research team, (c) self-identify as someone with intellectual and developmental disabilities, and (d) have the capability to work with team members. There were 23 inquiries and we considered 13 candidates and selected one finalist and two alternates. We developed an orientation, training, and support plan to ensure that this co-researcher was a fully integrated and successful member of the research team.
Recruiting community rehabilitation providers
As a first step, we compiled a list of 12 community rehabilitation providers in Massachusetts based on nominations from field-based trainers. When requesting nominations, we required a range of community rehabilitation providers sizes, regions, and cultures. From this list of 12 we selected 4 agencies to participate in the study, based upon agency size, geographic location, and diversity in mission and philosophy. The co-researcher was fully involved in the team's consensus.
We first contacted potential community rehabilitation providers by phone, provided an overview of the project, and requested the provider's participation. We gave each of these providers a fact sheet summarizing the purpose of the project and the data-collection process. In these initial phone calls, community rehabilitation providers were asked to identify participants they served and to collaborate with us to coordinate recruitment. A staff member at each community agency was offered a $100 stipend in exchange for identifying individuals and facilitating our visit to his or her location to conduct interviews.
Recruiting individuals and their contacts
The process for recruiting individuals with intellectual and developmental disabilities began with recommendations made by key contacts at each provider location. We asked each contact to select four individuals working in a range of employment settings (explained in more detail below). Staff members from the community rehabilitation provider initially approached each individual and inquired about his or her interest. Additional eligibility criteria included (a) an understanding of one's own employment process, (b) the cognitive capacity to understand the study and to consent to participate, (c) the desire to be interviewed, and (d) employment in the current setting for at least 6 months.
Upon each individual's interest in participating, one of the authors contacted the individual to explain the purpose and expected duration as well as the potential risks and benefits. Individuals were also told that they would be asked to identify a family member as well as an employment-support professional to be interviewed about the individual's employment process. If a family member or community rehabilitation provider staff person chose not to participate in the study, the individual could still participate.
Because individuals in the study have intellectual and developmental disabilities, we used a fact sheet to ensure clear communication and full participant understanding. We also emphasized that at any time during the study, respondents had the option to end their participation. After individuals understood the nature of the study and agreed to participate, we scheduled an in-person interview.
Data collection began with an accessible consent process, continued with an in-person interview with each participant who had intellectual and developmental disabilities, and ended with follow-up interviews with family members and employment-support professionals identified by the individual.
Because people with intellectual and developmental disabilities are considered a vulnerable population when participating in research, we carefully developed a consent process that used concrete terms and jargon-free language. This adapted consent procedure was created under the guidance of the co-researcher, with support from her project mentor. This process was conversational in nature; we stopped after each piece of information and requested that the individual verify his or her understanding. Furthermore, the written and verbal explanations were accompanied by pictures of each concept. To scrutinize the accessibility of the consent procedure prior to actual data collection, we pilot tested the consent forms. The pilot also provided an opportunity for the co-researcher and the other primary interviewer to practice the consent process.
Interviews with individuals who have intellectual and developmental disabilities
An in-person visit to each community rehabilitation provider occurred and included a series of face-to-face individual interviews that lasted approximately one hr each. Although semi-structured protocol guided each interview, we encouraged a free-flowing discussion. We pilot tested the protocols using the same process employed for the consent forms. Each individual was asked about (a) personal background, including living situation, work history, and employment goals and preferences; (b) circumstances or factors that influenced the search for their current job; (c) challenges and how they were overcome; and (d) level of satisfaction with their employment situation. The co-researcher and the third author conducted all face-to-face interviews. The co-researcher's project mentor also participated in the first two site visits.
We then asked the individual with intellectual and developmental disabilities to identify one family member and one employment-support provider who could give additional information about the individual's employment process. We then contacted these people by phone and asked for their consent to participate in an interview. Upon verbal consent, we scheduled interviews and asked them about (a) their role in identifying the employment preferences of the individual, (b) the individual's work history and employment options, (c) their role in the individual's decision-making process around employment, and (d) their level of satisfaction with the current employment situation. All interviews with family members and with employment-support staff were digitally recorded and sent to an independent transcription agency.
The sample consisted of 16 adults with intellectual and developmental disabilities: 7 worked in a sheltered-employment setting and 9 were employed in competitive employment. We also conducted a total of 13 interviews with family members and 15 interviews with employment-support staff members. (See Table 1 for more details on the sample members' characteristics.)
We used a qualitative approach to analyze interview data and employed the following steps: coding and memo writing.
Coding is an early and ongoing way of labeling data for sorting and assigning meaning (Miles & Huberman, 1994). We developed operational definitions for each code to ensure that all of us had a shared understanding of the code. The definitions described the code as the cases emerged. As the coding list was developed, the co-researcher periodically reviewed it and provided feedback on its clarity. Through the provision of routine feedback, the co-researcher became acquainted with the code list prior to actually participating in the coding of transcripts.
We used a qualitative software program (Atlas.ti for the PC) to conceptualize themes, store coded transcripts, and sort data. Initially, we met on a regular basis to reconcile codes and reach consensus on code usage. Once the coding process was established, team members were assigned documents to code in Atlas.ti; these documents were then secondarily coded by another team member. The co-researcher independently coded and reconciled these transcripts with various team members. We simultaneously coded and analyzed the data, often meeting as a team to compare specific passages, improve our understanding of the data, and explore the similarities and differences between people's employment experiences (Charmaz, 2000).
Once all transcripts were primary- and secondary-coded, we used Atlas.ti to generate query reports. The data from the reports were used to write memos, which helped to organize themes from the data. The memos allowed us to further develop, interpret, and analyze the data (Creswell, 1998). We met regularly to discuss the memos generated. The team's co-researcher created memos collaboratively with other team members and reviewed memos written by other team members to provide feedback and in order to remain abreast of key themes emerging in various coding reports. Overall, data analysis was focused on notable trends that warranted investigation while building cumulatively upon findings.
Findings showed a collection of people and factors considered influential in employment-related decision-making for individuals with intellectual and developmental disabilities. These distinct groups of people and circumstances appeared consequential at different points in time over the course of the employment journey.
Role of Family in the Formative Years
When individuals were asked who had been the most influential person in their life regarding work, they typically identified a family member. Families were influential because they (a) role-modeled employment and (b) instilled the belief that work was an expectation of adulthood.
Family members served as role models for employment throughout the individual's childhood and adolescence. Through role-modeling, family instilled the belief that work was an expectation for adulthood. One individual's family set the expectation that he was to become a hard-working adult just like the other adults in his family. His mother and sister role-modeled that employment can start during the adolescent years by discussing their first employment experiences with him.
Family members were often the first to talk about work as a means to achieve independence. Through role-modeling, family members showed that employment is the typical means of earning income and that work allows for independence and personal satisfaction. One family member explained this idea in more detail:
He knew I've always worked. He grew up knowing that I was at work every day. Never missed work. Always had to do it. And I always told him I have to work so I can support you. I have to work so you have a roof over your head. I said, “You're going to have to do the same.” And it's just how I brought him up.
This individual shared similar thoughts of his family member:
My father always said to me that I could have a good life if I try and get a job and I could have money to spend, like my own money to spend. … He also said to me that working will give you a great opportunity if you want to get another job.
Another individual talked about following his older brothers' lead. Watching his brothers grow up and get jobs influenced him because he saw that earning money let his brothers be independent and move out of the house. The individual said of his siblings, “Neither of them sits in front of the TV and [watches] all day.”
Instilling the value and expectation of work
Through years of role modeling, expectations about employment became deeply rooted and ingrained. One family member said, “[working] is what he sees around him, and he thinks that's the normal way to grow up.” Other families also provided examples of how they instilled the value of work. A staff member explained that one individual's mother had long-established aspirations that her daughter would work and, as a result, the individual had strong employment-related goals. The parents and siblings of another person in the study held high expectations that the individual would be successful in employment, which paved the way for the development of robust career goals.
Role of School-Based Staff and Early Employment Experiences
Teachers and other high-school staff provided the first exposure to work that often set the individual in a particular employment-related direction. These early employment experiences shaped the way individuals thought about employment, influencing preferences, career planning, and self-confidence related to work.
School-based staff provides first exposure to work
Several of the staff members interviewed mentioned teachers as being influential when it came to initial work experiences. As one individual's staff person said, “I think in high school—[it was] his teachers in high school … who first started giving him work experience. I think they were obviously an influence.” Another individual's staff member explained that his special education teacher was likely important in the individual's decision to go to work in the community because he taught all of his students about what it was like to work.
In the case of another individual, teachers were crucial in providing encouragement. While realistically reminding her that she would need to work hard, the individual's high school teachers also told her she was capable of doing anything she wanted in life. This individual started planning for employment in her last year of school, talking with one of her teachers about what it might be like to work in the community.
Shaping work preferences
All of the individuals had at least one previous work experience (either paid, internship, or volunteer) that shaped their employment preferences. The data showed that most of the individuals had a previous work history of a fairly limited range of jobs, including housecleaning, dishwashing, bagging groceries, and retrieving shopping carts. This may be because in the past the focus was on helping individuals to obtain work experience as opposed to finding a job match. A staff member explained why he felt that these jobs were sometimes necessary: “You just can't put anyone anywhere. You know? We were just trying to get him that first-time job.”
Although most participants had held such jobs, these early experiences led individuals to refine their employment interests and preferences. One individual who worked in a park in high school continued searching for a job that was active, outdoors, and with a variety of responsibilities. About the individual's early experiences, his father noted, “He had some jobs and some responsibilities that he enjoyed. He did some lawn work and grass mowing and maybe directed the visitors around the area. He was very proud of his work there.” At the time of the interview, this individual was working in a sheltered workshop and in enclave work on yard clean-up crews, but he was anxious to find a permanent job in the community that measured up to his first employment experience working in a park.
Shaping career goals
Other individuals had early experiences that helped them determine not only the type of job they wished to obtain but a specific career they wanted to pursue. One individual began his career planning early when he expressed interest in working at his high school's bakery. Through this work, he determined that he wanted to pursue culinary arts. Another individual had early experiences caring for small children and decided she would like to pursue a career in childcare. These career goals were shaped while the individuals were still in school and led them on a path towards pursuing community employment in these industries.
Early employment experiences also impacted individuals' confidence in their ability to work in the community and left some hesitant to pursue future jobs. For several individuals, the difficulty occurred because they were placed in positions where they could not complete the required responsibilities; their first employers did not know how to train a person with a disability, and they were quickly asked to leave. The impact of poor initial work experiences led some individuals later to choose sheltered employment. However, other individuals were able to move past negative experiences because they were strongly self-motivated or supported by family members or professionals to understand that the previous positions were not failures, just poor job matches.
Role of the Community Rehabilitation Providers' Culture When Offering Options
The community rehabilitation providers' culture affects the way staff perceives and offers employment options. The community rehabilitation provider's culture is comprised of its (a) mix of services and (b) philosophy about job readiness.
Mix of services provided
Three of the four community rehabilitation providers in this study offered a mix of employment settings, including sheltered workshops, enclaves and work crews, and community employment. Only one of the community rehabilitation providers exclusively offered community employment. At the three community rehabilitation providers that provided a mix of services, individuals often revolved through community employment, enclaves, and sheltered employment, depending on the availability of community jobs. In addition, individuals who were in community jobs at these three providers often simultaneously worked in enclaves and/or sheltered workshops. This was a clear difference compared with the community rehabilitation providers that only offered community employment, whose staff described its business as “a vocational program … we find employment and then we support them in their choice of careers.”
The services provided by the community rehabilitation providers affect the way staff perceive and offer options. For example, staff from one community rehabilitation provider that offers a mix of services noted that they direct job-development resources only to individuals who want to work in the community. Although they encourage community employment for all individuals they support, there is no expectation for someone to leave the sheltered workshop. A staff member noted: “I see it as important to get more and more jobs in the community and make the distinction of who is going to work and who is not, and putting 100% of the job development resources into those people.”
In the community rehabilitation providers with sheltered workshops, participants talked about the workshop as a safety net that individuals can return to if they lose their jobs. This can lead to gaps in employment history and affect the development of good employment skills. In the community rehabilitation providers that only provide community employment, individuals are encouraged to stay at a job that is not a perfect fit until a new job can be found because the alternative is unemployment. A family member said, “They worked with her to stick it out until they could find something else, to help her transition into [a new job].” Staff at this community rehabilitation provider explained that job changes are planned carefully. Staff supports individuals to not simply quit their present job before finding another, encouraging them to develop skills to responsibly transition between the two.
Philosophy about job readiness
Three of the four community rehabilitation providers believed that individuals need to meet prerequisites to be considered job-ready. These were the providers that offered a mix of employment services. Therefore, the existence of multiple workplace settings facilitated assumptions about prerequisites needed for community employment. For example, individuals at one community rehabilitation provider shared that the piecework in the workshop kept them working until they were ready for jobs in the community.
One community rehabilitation provider in particular appeared to be very concerned with determining whether individuals were ready to work in the community. A staff member noted that the sheltered workshop may be the best employment placement for people who have challenging behavior: “We have clients who behaviorally, you know, they've been in a sheltered workshop, and it's worked for them because they don't have the capability to be out in the community. ” One family member commented that an individual had to be determined by the community rehabilitation provider to be ready to “work outside” before seeking community employment. In discussing one individual who wanted to work in the community, the staff member noted, “Up until recently, he really wasn't ready for working competitively. He did the work crews. He did the internship, and this has all kind of helped him become ready for a job.” Another quote demonstrates how an individual's career goals can be hampered by staff members' perceptions: “[There are a lot of] examples of what she would like to do that are out of reach right at this point.”
The beliefs of the three community rehabilitation providers regarding the need to learn and practice skills in the workshop before pursuing community employment contrasted greatly with the employment-only community rehabilitation provider. Staff from this agency commented, “We look at all people with disabilities [believing] that [they] can enter the workforce. Everyone basically is job-ready.” Another staff member at the same community rehabilitation provider noted, “Everyone is pretty much job-ready as far as if you have a mind, body, and spirit, you can work. We feel that it's gainful employment for all, everyone.” At this employment-only community rehabilitation provider, the process of identifying career goals and opportunities begins quickly. Their focus is to support the individual to participate directly and immediately in the employment-planning process.
The three other community rehabilitation providers offered opportunities for individuals to learn tasks in a sheltered environment as preparation for community employment. Work-preparation courses were offered that included training on computers, cash-registers, remedial reading and writing, customer-service, and stocking shelves. Some of these skills were practiced in the community rehabilitation provider's cafeteria, bathroom, or mailroom. Staff felt this curriculum was valuable because it would allow individuals to obtain skills that would make the transition to the workforce easier.
Another community rehabilitation provider included internal short-term training opportunities and internships in the community to increase job-readiness, addressing issues such as distractibility and social skills. In addition, individuals could work on a crew doing groundskeeping. One individual who was participating in these activities noted that this model led him to be “sitting around waiting for work.” However, staff felt that these activities prior to the job search were necessary; as one staff member said, “We have a lot of assessments that we do on people … social and behavioral assessments. With this individual, you wouldn't even need to do one to realize he wasn't ready.” Overall, staff members understood that although some individuals wanted other jobs, a “progression” to community employment was necessary.
Role of the Job Developer in Decision-Making
The job developer emerged as the most influential person during the job search, often directing decision-making about employment choices. Individuals and family members often viewed their job developer as being responsible for finding employment and, thus, they were only minimally engaged.
Employment staff influences decision-making about job choices
Staff members explained that when they presented a job opportunity using positive language, the individual typically responded positively and wanted to accept the offer. In addition, when individuals were apprehensive about employment, some staff members noted that they had a very strong influence on whether the individual would accept or reject a job offer. In other cases, staff members made an effort to serve as advisors rather than decision-makers, helping the individual weigh the pros and cons of a potential job match.
One individual who described making her own decision about work shared that it was the job developer who convinced her to apply. This job developer noted the balance she tried to strike between supporting the individual to make a good decision and allowing the person to assert independence. The job developer said that often, individuals
are looking for you to make the decision for them. I think that's a learned behavior. So that when you give people more options or when you talk to people about what they like to do—I think there's a certain amount of decision-making that's a 50–50 type thing.
Another example of shared decision-making involved the desire of an individual to take on a second job. This individual sought out the position on his own (a rare occurrence in the sample); he then brought the opportunity to his job developer and they discussed the impact of having two jobs on his schedule. Another job developer described her influence:
If he needs my help, I give him advice. I advocate for him. I also help him—if he has to make a decision, I kind of help him do the pros and cons. We sit down together. We talk about it. And I ask him what his main goals are, you know, what he really wants. And usually he already knows what he wants; he just needed to hear it out loud.
In certain instances, however, individuals felt they had either no choice or limited choice in their job placement. One individual explicitly reported that he had no choice in the decision to accept his job in the workshop while waiting for a job in the community. When asked why he chose the job, the individual explained,
Because it's … the only paying job they could offer me right now until they could start looking for me for a real job. So basically this job I'm working at now was put onto me for now until I get a new job.
The individual went on to express his dissatisfaction with this outcome:
I was actually kind of planning to get a job at maybe a convenience store, but then they stuck me into the sheltered workshop job. And at the beginning, I was kind of bummed out, because I didn't want to work at a place where you sit down; I wanted to work at a place where you could walk around. … I had to complain a lot. … After a couple of complaints saying that, they finally started looking for me [for] a new job.
The feeling that the individual lacked any choice when accepting a job also occurred for community employment placements. One family noted that the individual did not have a lot of input in choosing his job. Another family noted that they had strongly influenced an individual to accept a job while waiting for a job that better matched her employment goals.
Limited engagement of the individual and family
Individuals and family members often viewed their job developer as responsible for finding employment and preparing to start work. Family members in particular perceived employment staff as more knowledgeable and skilled than the family could be in helping the individual find employment. Although family members appeared to be influential in instilling the value of work, they were less engaged in the process of job searching.
In some cases, family members were only minimally engaged; although clearly interested in and supportive of the job search, they were not aware of the details. In other cases, family members were not involved in career planning at all. Several of these families expressed an interest in being more involved, though they cited barriers, including not wanting to be viewed as a hovering parent, receiving limited communication from employment staff, and feeling as though employment staff were the experts in career planning. One parent noted how she balanced her desire to be involved with the need to respect her daughter's independence and the job developer's expertise:
I liked the fact that they prepared her and taught her how to interview, because she respected what they said a lot more than what we said because, of course, we're Mom and Dad. We don't know anything about interviewing, and what we would say is not the right way to say it. So sometimes input from an outside source on certain issues like that, these people are trained. They know better; you don't. They work much better. So coming from them, they were the job people so she thought that they had all the answers.
When asked about their involvement in the individual's decision to accept a job offer, most family members said that they were minimally involved. This parallels the finding that family impacts whether or not the individual pursues employment, but are less involved in the specific aspects of the job search and placement.
Role of Personal Preferences
Individuals' personal reasons for wanting to work also influenced employment-related decision-making. These were (a) earnings, (b) productivity, (c) the admiration of others, and (d) the quality of social relationships.
Participants said that their primary reason for working was to earn money to pay bills, contribute to their households, pay for hobbies or interests, and save so that in the future they could live independently. One individual noted that earning money would give him the independence to make his own decisions:
He wants to be as independent as possible. He wants to have an apartment. He wants to have a car. He wants to have all the things that his brothers and sisters have and his family has. And he wants his independence and wants to make decisions in his life.
Several individuals also reported that the realization that one could earn more money working in the community was a motivator for leaving the workshop. They reported being dissatisfied with the low wages of the workshop. One noted that they were at the community rehabilitation provider from 9 a.m. to 1:30 p.m. and only earned about $3 per day. Another individual preferred working on a work crew to the workshop because the work crew offered better wages.
Individuals noted that they wanted to work so that they could be productive members of the community. Many reported accepting a job because if they did not work, they would feel bored and would spend their time sitting at home and watching TV. Individuals wanted to feel useful and valued and to feel as if they have a reason to get up and a place to go. As noted by one person, “I needed to keep busy. I like to keep busy. I used to help [my mom] around the house and stuff like that, but I needed more of an outlet in my life.”
Individuals who felt productive at work reported that they were more likely to remain at their jobs. They reported having tasks they enjoyed, always having enough work to do, being able to be physically active on the job, being able to work at their own pace, and feeling confident in their job responsibilities as reasons to remain employed. One individual said,
I felt like a “somebody” working in higher enterprise and going to work and then coming back. I felt like a person, like someone normal would feel like in a job and everything. And I'm helping the community, helping people with their groceries. I felt good about that.
Along with the opportunity for greater earnings, individuals in sheltered work were motivated to try community employment because of the increased productivity and the greater variety of responsibilities it would entail.
Individuals and their families particularly noted the desire for an increase in work hours, another indicator of the preference for productivity. Staff members at community rehabilitation providers were aware of this concern, but noted that they felt uncomfortable approaching employers about expanding work hours because such an increase could require individuals to take on more complex responsibilities or earn special certifications.
Admiration from others
How friends, family members, coworkers, and customers perceived the quality of an individual's job and performance impacted choices. Having a high-quality, community-based job that was worthy of bragging about resulted in a sense of pride. In fact, several individuals who transitioned from the workshop to jobs in the community received praise on their accomplishment from individuals and staff at their community rehabilitation provider, influencing others to consider integrated jobs as well.
Being identified as a valuable part of a team by coworkers was another factor that led individuals to either choose or to remain in community employment. One individual shared praise he had received from the employer: “You're a real good worker and you're helping all of us. We appreciate you, and we really trust you to do everything.” Another said that even though he worked a busy Saturday at one retailer, he loved the job because he was a part of a team that gave 100%.
Being respected by customers also influenced the choice to remain in community employment. One individual's employment staff member noted, “The clients know her name and have brought her gifts. The business owners have also shared that their clients like the individual and would miss her if she wasn't there.” Another person who worked in retail was recognized for providing outstanding customer service: “I've seen him at his absolute best at Christmas time when people are searching around for something to buy for their child. And he will give them a suggestion or give them advice on something, and they're just amazed.”
On-the-job social relationships
Positive relationships with coworkers were critical to choice-making. Friendships in the workshop between employees with disabilities were found to provide a sense of camaraderie and social connection. Friendships in the community between individuals and their coworkers without disabilities were also found to provide these benefits.
Perceived social acceptance, especially from coworkers without disabilities, was important. One individual's coworker made her CD mixes of music that they both enjoyed listening to. Staff noted that another individual not only chose to eat lunch with her coworkers instead of returning to the community rehabilitation provider to eat, but that together they joined a craft committee. One individual employed in a community job noted that she teased her boss and coworkers because “I love my boss. And I love my coworkers. They love me. And I love the way we all get along good with one another.” Another individual shared that he was satisfied with his job because his coworkers treated him with respect.
Staff also acknowledged the importance of taking the time to determine opportunities for social connectedness. They reported the importance of a supportive job environment and a workplace culture where coworkers are accepting, employers are flexible, and there is a willingness to provide natural supports. For one person, a job that provides opportunities to be with peers without disabilities can provide expansion of social networks. For another, a good match might be a community job that helps to retain the friends developed in the workshop, such as having the proximity to return for lunch.
Interestingly, when social connectedness was perceived in community-based jobs, it was described as hard to find and requiring the right fit. Although individuals in our study were described as well-liked, given a lot of attention, and fully included in holiday parties and gift-giving, the depth of the relationships appeared superficial or limited at times. One staff member noted,
He has some relationships at work. I think work is a strong base for his sort of feeling of belonging and feeling of value. And he has some people there that he has a relationship in that sort of way. I'm not sure he has any strong, really social relationships at work of, “Hey, the weekend's coming up. You want to get together and go do something?” kind of level.
In certain cases, strong social connections made in the sheltered workshop influenced choices about community employment. Individuals who were considered to be higher-functioning in the sheltered workshop often chose to stay there because it offered them the opportunity to feel like an expert, achieve a certain status, and be revered among peers. For example, one staff member commented that an individual “gets his self-esteem” in the workshop and that he “is so popular … he would prefer to stay.” Another staff member at another community rehabilitation provider noted that one person feels a sense of exclusion and difference when he is out in the community because of his intellectual disability. However, when the individual is in the workshop,
He may as well be staff. He helps everybody out; he helps people who are lower-functioning. People look up to him. You know? And when he would go out into the community, he had some issues with that, because his disability was apparent.
Friendships with peers in the sheltered workshop can become a barrier to choosing community employment. Staff noted that individuals miss their friends in the workshop and that they work hard to support individuals to believe that they can make friends in the community. Not only can the fear of missing one's friends inhibit individuals from pursuing work in the community, it can lead them to thwart their own success in community-employment placements. One staff member said:
They look for that camaraderie [in the community] and they're afraid they're not going to get it on the outside. And you know what? Some of them probably don't, and that's why they come back. They sabotage the job. They miss their friends here.
Findings show a collection of people and factors considered influential in employment-related decision-making for individuals with intellectual and developmental disabilities. Furthermore, distinct groups of people and diverse circumstances appeared consequential at different points in time over the course of the employment journey. Families emerged dominant in the formative years because they role-modeled employment and instilled the belief that work was an expectation of adulthood. School-based staff provided the first exposure to work that shaped preferences, career planning, and self-confidence. The community rehabilitation providers' culture, comprised of its service mix and philosophy about job readiness, affected the way staff perceived and offered employment options. The job developer became especially persuasive during the job search, perceived by individuals and family members as responsible for finding a job, and resulting in family's decreased engagement in the process. Finally, personal reasons for work, such as increased earnings, productivity, the admiration of others, and the quality of social relationships, swayed individuals' decisions about staying in a current position and about whether to pursue community or sheltered work.
Each of these factors impact the ways in which the individual thinks about and makes choices along the employment path. Through an understanding of these persuasive elements, critical decision-making points surface. These are the pivotal areas in which the most effective interventions can occur. How do we seize these opportunities as they come forward, maximizing the chances for the best employment outcomes? The following recommendations are offered to those who provide employment support in the intellectual and developmental disabilities field.
Engaging Families: Start Early and Support the Family So They Stay Involved
Participants in our study often reflected on the impact that family members had during their early years and on their family's influence in shaping employment expectations. The experience of employment expectations being “taught” by family members and becoming deeply ingrained in one's upbringing is consistent with previous research findings (Way & Rossman, 1996). As our participants began searching for employment, families, individuals, and job developers agreed that the practicalities of the job search be left to the professionals. Family members often expressed the desire to become more fully involved but felt unqualified to do so.
One must question what is lost if families are only peripherally engaged at the time of job search and placement. Other authors have found the family, as part of an individual's social network, to be a critical piece in the job search (Gould, Hasnain, Bose, & Butterworth; 2005). Hoff, Gandolfo, Gold, and Jordan (2000) also pointed out the important role of families in job development, both for networking and to help the job developer get to know the individual and his or her interests. Moreover, the very nature of the career-planning process described by these authors places the individual at the center of a process that encompasses family, friends, and community resources to achieve meaningful employment.
Ensuring that families be connected to and participate in the job search process is sometimes no easy task. A stronger emphasis on personal networking strategies during the job search helps this occur naturally. Furthermore, strategies such as the 30-Day Placement Plan (Condon, Gelb, & Gould, 2005) make certain that core family members are actively engaged in the job search and planning process, at the specific time at which our research shows the potential for family disengagement.
Creating Stronger and Earlier Links Between Schools and Employment Systems
Findings reveal that school-based staff become the conduit to early employment experiences that shape the individual's choices and confidence about employment. Other research findings indicate that strong teacher advocacy for work experience correlates positively with successful integrated-employment outcomes for transition-age students (White & Weiner, 2004). Because teachers and others can be pivotal in providing such employment opportunities to their transitioning students, giving them education about the value of integrated employment and the importance of job matching is critical.
Education personnel need not only an increased knowledge of providers and the local service system but also an understanding of how to connect their students to the community rehabilitation providers who will best support goals for employment. Ensuring that the optimal connection is made will require that teachers are aware of the differences in philosophies among local community rehabilitation providers and employment outcomes.
Building relationships between service coordinators from the state's intellectual and developmental disabilities agency and local schools will open the lines of communication about employment opportunities and supports available. Engagement between both parties in activities such as tours of community rehabilitation providers before graduation or jointly sponsored transition fairs would both increase exposure to the range of service options and philosophies and broaden expectations about the employment choices available.
Providing Technical Assistance to Community Rehabilitation Providers to Enhance Knowledge and Skills
Three of the four community rehabilitation providers in our study appeared to be only partially committed to the idea of employment for all, holding preconceived notions about whether an individual was ready for community work. Beliefs like this are often rooted in the culture of the community rehabilitation providers. Butterworth, Fesko, and Ma (2000) found that a catalyst for the changeover from facility- to community-based employment was to alter organizational values to include the belief that all individuals are ready to work.
Shifting notions about job readiness require a critical review of the paradigms that have shaped employment service delivery for this population. The principle of least restrictive environment has been operationalized as a continuum model in human services (including employment service delivery), which has linked severity of disability with segregation (Taylor, 2004). The flawed nature of such a paradigm is that it lacks reference to concepts such as self-determination, consumer-directedness, and community integration, among other things (Taylor, 2004).
Replacing this principle of least restrictive environment is the concept of supported employment, which assumes job training can take place on the job; there are no prerequisite skills for employment, and workplace support can occur over the life of the job (Hill & Wehman, 1983). Furthermore, concepts such as the 30-Day Placement Plan (Condon et al., 2005) combine the tenets of rapid placement, team-based job finding, and job-seeker directedness and apply them to all disability types, regardless of severity. Shifting negative assumptions about an individual's readiness to work in the community can only enhance the search for a creative job match. Beliefs about job readiness affected how staff members of community rehabilitation providers described their employment-planning strategies and focused the individuals on skill-building activities before beginning the job search. This mindset also influences how job developers interact with and present job opportunities to individuals with whom they work, based on their notions about what type of employment experiences may or may not be successful.
Training on the most promising job-creation and job search strategies for individuals with intellectual and developmental disabilities, such as customized employment, job carving and creation, resource ownership, and micro-enterprise, are especially constructive (National Center on Workforce and Disability/Adult, 2006). Migliore, Winsor, Butterworth, and Hall (2010) found a disconnect between the job-development activities recommended and those implemented by employment specialists, indicating a need for more targeted training. Administrators of community rehabilitation providers also need to be aware of these techniques and support their employment staff to use them more widely than was found in this study.
Supporting Informed Choice
Findings show that job developers are perceived as the ones responsible for leading the job search, which led family members and individuals to rely on them. Job developers are also perceived as directing choices, especially concerning the decision to accept a job. Finally, they are seen as the experts, which can negatively influence individual and family engagement in the job-search process.
Ideally, individuals should be offered more than one job to choose from, although this is not always possible to do even for people without disabilities. Individuals need to have multiple opportunities to try out nonstereotypical jobs to determine what roles and responsibilities they enjoy and should have the opportunity to try out a potential job for a short period of time before formally accepting it. This is a different mindset from encouraging job trials solely for the benefit of the business; it allows the individual to gain experiential knowledge and to use this knowledge to make informed decisions. Those who feel confident making their own choices will be better prepared to participate in the job-development process and decide for themselves whether or not they want to accept a job.
Professionals providing employment supports must consider core self-determination principles in their work and use their perceived influence wisely. Principles include the freedom to choose employment options, authority over resources, the ability to select support systems, the responsibility to spend public resources wisely, and confirmation about the quality of their experiences. Professionals need to see self-determination as a fundamental ingredient of employment support. They must know that for some job seekers, understanding that choices are available, making decisions, and owning the responsibility for decisions are skills that need to be learned. Self-determination can be taught by clarifying expectations and consequences, remaining in a facilitator role (even if it makes the process slower), allowing and respecting job-seeker decisions even if they seem counterproductive, and using the assessment phase as a platform to gauge the job seeker's comfort level with self-determination (Brugnaro & Timmons, 2007).
Create Opportunities to Build Social Connections Outside of the Workshop
Findings from this study clearly show social connections as being a central reason for work. The camaraderie and acceptance experienced at the workshop was reported as a disincentive to community employment, remaining consistent with other literature (Cohen, 2005). The inability to maintain these connections upon entering community employment could lead individuals back into the workshop. The difficulty that individuals had keeping their friends after leaving the workshop or making new friends with coworkers in community jobs limited their work choices.
Literature on integrated employment indicates that one of the most important outcomes of community-based work is the level of social integration of the worker (Yan, Mank, Sandow, Rhodes, & Olson, 1993). Furthermore, social networks are positively related to labor force participation, and groups of people who are unemployed and underemployed can use their social networks to increase opportunities for employment (Acquilera, 2002). Relationships with coworkers contribute to enhanced quality of life and higher levels of satisfaction for employees with intellectual disability (Mank, Cioffi, & Yovanoff, 1999).
Research indicates, however, that it is often the case that workers with intellectual disability have limited interactions with coworkers, and when they do interact, the quality of these interactions are substantively different from interactions among workers without disabilities. For example, Ohtake and Chadsey (1999) found that nearly all of the participating employees with no disabilities reported work acquaintances, work friends, and friends in their employment setting, but none identified coworkers with disabilities as social friends. Findings from our study mirrored such barriers.
Limited connectedness beyond the workshop, therefore, is more related to the problem of social isolation experienced by many with disabilities than to a true need or desire to be in the workshop. Individuals need to be supported to make friendships in community employment as well as to maintain their friendships from the workshop. They need opportunities to form relationships with individuals who share common interests and hobbies rather than just a disability. Employment planning must include efforts to sustain relationships, offering systematic strategies for people to connect as they move to community employment. Professionals can alleviate the fear of losing contact with friends from the workshop by supporting individuals to maintain phone or e-mail communication and to engage in social activities outside of workshop hours. Other concrete options for building social connections outside of the workshop include volunteering, joining a self-advocacy group, or serving one's community through programs such as AmeriCorps (Sotnik, 1995).
Individuals with intellectual and developmental disabilities still remain underemployed compared to other disability groups. Those working with them need to consider the people, circumstances, and experiences that become consequential and persuasive at different times over the course of their employment journeys. As the employment agenda for this population pushes forward, targeted interventions at well-thought-out decision-making points will maximize the chances for the most meaningful employment options and outcomes for individuals with intellectual and developmental disabilities in the years to come.
This article is funded, in part, by Cooperative Agreement No. 90DN0216 from the Administration on Developmental Disabilities, Administration for Children and Families, U.S. Department of Health and Human Services. Points of view or opinions do not necessarily represent official Administration on Developmental Disabilities policy.
Jaimie Ciulla Timmons, MSW (e-mail: firstname.lastname@example.org), Research Associate; Allison Cohen Hall, PhD, Research Associate; Jennifer Bose MA, Research Data Coordinator; Ashley Wolfe, Certificate of Business Services, Research Assistant; and Jean Winsor, PhD, Research Associate, Institute for Community Inclusion, University of Massachusetts Boston, 100 Morrissey Blvd., Boston, MA 02125.