“It makes me feel part of the society”: Return-to-work decisions of SSDI beneficiaries

2.1 Participants

Recruitment was structured to protect the confidentiality of both study participants and VR customers who chose not to participate. The research team compiled recruitment packets, which included an introductory letter, fact sheet, consent forms, and a return mail envelope addressed to the lead author. The packets were shipped to the two VR agencies, and VR office staff mailed the packets to a total of 825 customers, which was a subset of the RCT participants. The recruitment materials included a dedicated email address and toll-free telephone number, both monitored by members of the study team. VR customers who received the study packet could call, email, or mail the study team if they were interested in participating or learning more. Potential participants were then screened by a researcher, and, if they met study criteria and wanted to participate, they were invited to complete the informed consent process and set up a first interview. This approach helped maintain confidentiality and reduced the chances of influence by VR staff.

Of the 48 participants included in this qualitative follow-along study, 75% were in the RCT treatment group, and 25% were in the RCT control group. Table 1 displays the demographics of our sample and that of the overall RCT sample, whose data were drawn from the agencies’ case management systems (Sevak, Kehn, et al., 2017; Sevak, Martin, et al., 2017). While the age of participants closely matched the overall sample, there were slight differences in race and gender; i.e., there was a slightly higher percentage of Black women in the current study than in the RCT sample. Given that Black women face disproportionate inequities in employment and pay (Purcell et al., 2010; Rosenfeld & Kleykamp, 2012) yet have been historically underrepresented in research (Fisher & Kalbaugh, 2011; George et al., 2013; Huang & Coker, 2010), we consider minor oversampling for this particular population a benefit rather than a deficit.

As shown in Table 1, this study’s participants resembled the overall RCT sample with respect to education, with some differences. Participants were equally as likely as the overall sample to have less than high school diploma and only slightly more likely to have a bachelor’s degree or higher. But a much higher percentage of qualitative study participants reported having some post-secondary education than the overall sample, and a correspondingly smaller percentage reported having only a high school education. This difference could be due to the recruitment approach, which used a packet of text-heavy documents that would be more accessible to those with a higher education level. However, given that the proportions on the upper and lower ends of the education spectrum were very similar, it could also be due to a difference in how “some post-secondary education” was defined in our study and by how it was defined by VR staff entering case data.

All participants lived in the community, with a range of family and household arrangements. One quarter (25%) were married, 33% were divorced or separated, and 42% were single. Just under half (46%) lived alone; the rest had a variety of household arrangements, including living with spouses and/or children, caring for parents or others with disabilities, or sharing a home with other family members such as siblings, or living with roommates. 17% had children under 18 living with them, but many others spoke about adult sons and daughters, non-custodial children, grandchildren, nieces and nephews, and friends’ children, who played a significant role in their lives.

In the interviews, participants were asked an open-ended question, “What type of disability or disabilities do you have?” and were also asked to choose one or more disability categories from a provided list. Most reported disabilities in more than one category. The most common category was “health or medical,” with 67% of participants indicating a disability in that category. Over half (56%) reported a mental health disability, 33% reported a mobility disability, 31% reported a brain injury, 13% reported an intellectual or developmental disability, 10% reported a hearing disability, and 6% reported a visual disability.

One to three in-depth qualitative interviews were conducted with each of the 48 participants, for a total of 107 interviews, over the course of about 18 months (Table 2). The interviews were predominantly conducted over the phone, with a few conducted in person, and generally lasted 30 minutes to an hour. Interviews were individualized; interviewers began with broad questions and pursued topics as they were raised by interviewees. The content of the interviews extended beyond planned interview questions, which covered areas such as employment goals and the job search process, current and past work, educational programs, applying for and getting SSDI, vocational rehabilitation services (including specific aspects of the model being tested), and financial issues. While the interview guide did not include direct questions about participants’ disabilities (apart from the demographic questions described above), most talked at some length about their disabilities in relation to the planned topics, and interviewers probed when appropriate.

Drawing on an ethnographic approach, the interviews involved asking open-ended questions, listening for and picking up “markers” that indicated topics of importance to interviewees, and probing for further stories and details (Weiss, 1994). A key goal of ethnographic interviewing is to understand the meanings of events and circumstances within the worldview of the person being interviewed, in other words, “to know what you know in the way that you know it” (Spradley, 1979). Ethnographic research has stressed the important role of narrative in understanding and interpreting the experience of illness or injury, including healing and rehabilitation, from the point of view of the person experiencing it (Kleinman, 1988; Mattingly & Garro, 2000). An ethnographic interview is a collaborative endeavor between the interviewer and interviewee and therefore may reveal information about multiple areas of the interviewee’s life, their experiences of personal importance, their social worlds, and the systems with which they interact (Heyl, 2001). Conducting multiple interviews allows a research relationship to develop and for the interviewee to tell a fuller narrative.

The interviews were audio recorded, transcribed, and entered into Atlas.ti software for qualitative data analysis. Following principles of grounded theory (Charmaz, 2005, 2006) and procedures outlined by Miles et al. (2014), data collection and analysis happened concurrently, making the research an ongoing, iterative process, as the data fed the analysis and the analysis shaped further data collection. Miles et al. (2014) write that this approach helps the researcher “cycle back and forth between thinking about the existing data and generating strategies for collecting new, often better, data.” Thematic coding and memoing began early, before the first round of interviews was completed, and analysis in Atlas.ti continued throughout the study. Initial codes were created both deductively (based on areas of inquiry) and inductively (emerging out of the interviews themselves). Codes were added, modified, and clarified over the course of the study. For example, in subsequent rounds of coding, as more interviews were conducted, some codes were refined into sub-codes, while others were combined under larger headings.

All coding was reviewed by the lead researcher and revised as needed, and any significant disagreements were resolved through consensus, to improve consistency and ensure that all instances of each theme were captured. On the basis of this analysis and ongoing review of interview questions and techniques, the interview guides were revised periodically. Follow-up interview guides were developed to probe on emerging themes, as well as more sensitive topics, such as participants’ financial situations, that had not been asked about directly in the first interviews. Participants were identified for follow-up interviews after reviewing the transcripts and determining that further interviews would likely continue to provide new information of use to the study.

3.1 Financial risks and rewards of returning to work

Despite the potential benefits of work and earning an income, transitioning to full-time work was often characterized by participants as a risky endeavor, and the fear of losing benefits led to ambivalence about following through on employment plans. The process of returning to full-time work was also seen as complicated and confusing, requiring calculating the impacts on not only cash benefits from SSDI, but also other benefits, such as health care (Medicare and/or Medicaid), food (SNAP), and housing (Section 8 and public housing), for oneself and one’s family. Murray * , a single man in his fifties, expressed ambivalence about a full-time job recommended by his VR team this way:

Participants were aware that earning any level of income would have the potential to affect means-tested benefits, and given the complexity of the various systems, predicting impacts could be difficult without careful analysis and planning.

Sabrina, a divorced woman in her fifties, described her financial situation as “poverty level” and managed to survive on her limited income by living with her mother. She had been taking part-time, temporary jobs until she had a health crisis that prevented her from working. She saw taking the leap to earning above SGA as a “drastic change” that she was not ready to make:

In this quote Sabrina highlights a common concern among many participants; her public benefits do not keep her out of poverty, but they are a more stable source of income than employment, especially given the unpredictable nature of her disabilities. Still, she wanted to eventually go off SSDI and saw part-time work as a stepping stone towards that goal.

Even though working full-time (or above SGA) can ultimately provide an even higher income –as well as health insurance and other fringe benefits –several other participants said they preferred working part-time and maintaining SSDI benefits. By doing so, they could still increase their overall income, but with less risk. On the one hand, full-time employment had the potential for providing earnings that were greater than their current benefits. On the other hand, many feared losing their reliable SSDI income, which was often difficult to obtain. Some saw working even part-time as a risk to their status with SSDI and feared accidentally exceeding their allowed earnings and losing benefits.

While a few participants said they were “okay” or “making it,” most were struggling, describing their financial situations with phrases like “very poor” or “pretty dire.” Several were unsure month to month whether they could cover their basic household expenses, much less spend money on leisure or social activities. Priscilla, a single woman in her fifties, described her financial situation this way:

In this quote, Priscilla drew connections between her financial worries and her mental health, which made budgeting a challenge. Other participants similarly noted the time and energy it took to manage their multiple public benefits, as well as their health care needs. Without a budget, Priscilla said she left food as the “last thing” to take care of, which could mean going without. In turn, she found it difficult to pursue her career goals while worrying about her next meal. Each of these dimensions of her life was inextricably linked to the others, highlighting the need for supports that attend to this complexity.

3.2 Family engagement, roles, and responsibilities

Financial concerns were often embedded in - and sometimes superseded by - less tangible needs and goals, including fully engaging in family life or fulfilling a role in the family. Participants who were parents spoke about providing materially for their children, but also being present for them - providing care and guidance, protecting them from harm, and acting as a role model. Patricia, a single mother in her fifties with school-age children, spoke about the challenges of balancing these roles, especially as a single parent with disabilities. In addition to SSDI, she received food stamps and a Section 8 housing voucher; she also visited the food pantry and had help from adult family members. She wanted to be employed but did not feel able to work full-time, both due to her physical limitations and because she needed time to spend with her children. Patricia did as much part-time, temporary work as she felt she could, but she and her family still struggled to make ends meet. However, while she was concerned about her family’s economic wellbeing, she was also motivated to be a role model or “good example” for her children, which in part meant self-sufficiency:

Another participant, Bernard, also divorced and in his fifties, spoke about what returning to work full-time and going off SSDI would mean to him, personally and as a father. His children lived with their mother, but he continued to be actively involved in their lives, which was easier to do while he remained unemployed. At the same time, like Patricia, he wanted to be a role model to his children –and for him, that meant having a job:

At the time of our last interview, Bernard had interviewed for a full-time job that was in his broad area of interest but paid less than he had hoped. Given the prospect of losing SSDI for himself and his children, as well as other public benefits, he and the financial counselor at VR had determined that this position would not allow him to “break even” financially. Still, the intrinsic values of working, including setting what he saw as a good example to his children, outweighed the financial implications of losing benefits, and he had decided to take the job if it were offered to him.

Thelma, a woman in her early 60s was concerned about fulfilling her role as a grandmother, saying, “with my medical expenses mounting, by the end of the month, I don’t have money left to do anything, and I can’t spoil my grandchildren.” Another role she could not fulfill without a job was that of an equally contributing spouse; being unemployed meant her husband (also in his early 60s) had to shoulder more of the financial burden. Instead of working part-time and easing into retirement, she lamented, he had to continue working full-time. As seen in these examples, practical concerns such as food, housing, and medical expenses motivated participants to obtain employment, but these pragmatic issues were often tied to deeper desires for family engagement and to live up to the expectations of their families.

3.3 Activity and social engagement

Most participants cited a desire to be active and increase their social engagement as motivations to seek work. They saw a higher income as opening opportunities for greater freedom of movement and leisure and also saw increased activity and socialization as intrinsic benefits of working. Unemployed and underemployed participants (who made up the bulk of the sample) often described their current daily life as inactive, unproductive, isolated, and boring. Rather than “sitting at home watching TV,” they wanted to “get out of the house,” “socialize,” and be “productive.” These statements reflect several interrelated themes, including reducing isolation and depression, being physically active, and enjoying life. Several participants said they wanted the opportunity to interact with coworkers and customers, and others wanted to use their earnings to go out with friends and family in their free time. Alice, a divorced woman in her 50s who was providing home care to a single client, spoke about the importance of “socialization,” saying:

Others spoke about the mental health benefits of being around other people. George, a divorced man in his 60s with mental illness and addictions, found a part-time job in a grocery store, saying, “I like to associate with the people at work - customers and employees.” Having a job meant being less isolated and more active, in a way that felt healthy and productive, as opposed to the social interactions he associated with his addictions:

George observed that his new schedule provided “a little structure” and the positive social interaction he felt he needed to maintain his sobriety. Similarly, feeling “isolated and alone” was also the “biggest motivator” to return to work for Ben, a divorced man in his 50s with a neuromuscular disease and a mental health disability. After his divorce, when “the depression got really bad” and he “got into a pretty deep hole,” he started seeking work “out of desperation,” in hopes of gaining “some confidence.” By the time of our second interview, he had found a full-time job and had just ended his last month of SSDI. Even though going off SSDI caused him some anxiety, Ben decided to keep working so he could continue to “reengage with the world”:

Ben missed participating in a sport as an exercise practice but still preferred working because it reduced his overall isolation. While he admitted, “I still struggle with anxiety as well as depression,” he also felt his “emotional health” had improved because of his new routine, which included getting up early every weekday, walking his dog, and going to work, and then seeing friends on weekends. He also attributed the improvement in his mental health to the independence he felt in going off SSDI: “I think breaking that sense of neediness and dependency was an important step for me.”

Many people framed the difference between employment and unemployment as wanting to “get out of the house,” rather than “isolating here at home.” Keith, a man in his 60s, considered volunteering because that would mean “getting out more” without losing SSDI, saying that “sitting in the apartment watching TV all day is kind of ridiculous ... -1pt because I like to do things.” Keith and a few others saw volunteering as a way to be active and to help others with less risk than paid employment. Similarly, Alice, a divorced woman in her 50s said working was “a reason to get out of the bed, get showered, and get out of the house every day” as opposed to “not doing anything, just sitting around every day watching TV.” Beyond having more money to spend on leisure or family activities, for many participants, the act of getting up and going to work itself meant participating more in the community and living a more active life.

3.4 Personal meanings of work

Embedded in many of these stories and quotes from participants is a desire to work because of the meaning it brings to one’s life. To the individuals in this study, working meant many things, including feeling productive, contributing to society, helping others, being a role model, and attaining a sense of social belonging. These meanings participants derived from work also served as motivators in their search for employment. As mentioned above, a common theme among many participants was a desire to work in order to be “productive,” and several people linked productiveness to a self-concept as a worker, such as Dawn, a married woman in her 40s:

Like Dawn, all the participants in this study had a substantial enough work history to qualify for disabled worker benefits from Social Security, so returning to work often meant returning to what they thought of as “normal” life and fulfilling their expected social roles. Nancy, also a single woman in her 50s, who lived with her adult daughter in a small town, felt unable to work full-time but volunteered occasionally and wanted to get a part-time job in order to “get out of the house,” saying:

Nancy expressed a common theme in the interviews - she had “worked all [her] life” and thought of herself as “the type of person who can’t just sit still.” Her self-concept was also connected to her ability to “help somebody,” “do something,” or just “keep busy” despite her limitations. Finding a job, she felt, would help her become that person again. Similarly, Clifford, a man in his 20s with a brain injury, wanted to “try to be a stand-up human-being that is respectable.” He said he simply wanted to be a “normal person,” explaining, “part of being a normal person in my eyes is someone who works.”

Bernard, the divorced man in his 50s who was quoted above about his role as a father, wanted to return to work full-time, and linked being “a lot busier” and “a lot more productive” with feeling “engaged with society” and “giving something back,” in contrast with getting “a check every month from the government” while on SSDI. One of Bernard’s motivations for working was to help others. While he searched for a full-time job, he did volunteer work and found satisfaction in listening and providing advice to others in a mutual support group. “Even though I’m not working,” he said, helping others “helps me feel productive. ...   It provides some type of psychological lift for me.” As mentioned above, a few other people who were not ready to work full-time also found volunteer work to be a less demanding and less risky option, since it would not produce income that could jeopardize their SSDI, but it would be a meaningful way to spend their time.

Many people talked about the ways that their personal identities and feelings about their lives were tied to working, and some framed employment as building their self-esteem. For example, Holly, a married woman in her 40s with adult children, had a goal of working full-time and going off SSDI, but her road was going to be much longer. VR was helping her get the education she would need to pursue a new career in a helping profession, which had been a dream of hers. The following is an exchange from her first interview:

Being a role model, building her self-esteem, and being “part of the society” were paramount for Holly. For her, working and going to school carried meanings far beyond any practical or financial benefits.

Participants often associated working, and especially working enough to go off SSDI, with self-sufficiency and independence, such as Fiona, a woman in her 30s:

In this interview, Fiona struggled with the meanings of disability, work, and government benefits. Even though she recognized she was entitled to SSDI benefits after paying into the program, she felt “embarrassed” with her peers about being disabled at such a young age and would “feel better” about earning money through a paycheck. This narrative of ambivalence about deserving or needing SSDI, especially in contrast with one’s identity as a worker, arose repeatedly in the interviews. As these quotes show, the meaning of work is closely tied to the other themes discussed here - social engagement, family roles, and fears about losing stability –and was part of what motivated participants to seek assistance from VR.

3.5 Experiences of the SGA Model

The SGA Model was designed to serve the needs of SSDI beneficiaries and emphasized rapid engagement and an increase in the pace of services, and utilized a coordinated team approach (CTA) that involved a financial and benefits counselor and job placement specialist, led by the VR counselor (Sevak, Kehn, et al., 2017; Sevak, Martin, et al., 2017). While this qualitative follow-along study was not designed as an evaluation of the model or a comparison with usual VR services, interviews did involve discussions of the services participants received, and these experiences were connected to the decisions they made about returning to work. The following sections focus on the experiences of individuals receiving the SGA Model, i.e., customers of the intervention sites. Four aspects of the model will be discussed: the coordinated team approach, financial and benefits counseling, job placement services, and pace of services and client engagement.

4.1 Limitations and directions for future research

While we attempted to recruit participants from a range of background and experiences, some limitations to the study sample are important to note. The consent information was conveyed both in print and over the telephone, during the screening process and at the start of each interview, but only in English. In order to ensure fully informed consent, we excluded people with legal guardians, as well as those who could not answer a series of questions to confirm they understood their rights as study participants. Other interview formats were offered, including video conference or TTY. Still, while all participants had significant disabilities, our sample did not include people with certain cognitive or speech impairments or Deaf individuals. Nor did it include people with limited English language proficiency or members of certain underrepresented ethnic and racial groups, including Asian and Pacific Islander Americans and Native Americans.

Even though we conducted interviews over the span of 18 months, conducting interviews over a longer period could offer additional insights into how former VR customers experience their employment outcomes, including how remaining unemployed, working part-time, or working full-time and transitioning off SSDI affects their lives. Further data collection on this population and sample, both quantitative and qualitative, could reveal the outcomes of decisions and how plans and goals develop over time. This would allow exploration of the entire employment process and the effects of SSDI receipt, or loss of SSDI, on long-term outcomes.

This study’s scope was limited to the experiences of individual demonstration participants, but the findings show that employment decisions are not made in a vacuum. Parents, for example, may have to weigh the need for child care and their desire to provide financial stability for their families. Families are both affected by and influence choices made about working, so family members should be recognized as agents in the decision-making process, rather than just factors in individual decisions. A study that includes family and household members as active participants could further illuminate the social nature of the employment process and how it impacts others.