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.

Purpose – The purpose of this paper is to learn from participants about their experiences managing type 1 and type 2 diabetes at work. Design/methodology/approach – Longitudinal, qualitative interviews with 45 individuals three times per year over three years focussed on views about disclosure; how they found or created support to manage their diabetes at work; and how they experienced the relationship between health and productivity. Findings – Among participants, the presence of secondary conditions, such as fibromyalgia or vision loss, typically overshadowed the effect of diabetes at work. These conditions were often mentioned as the reason why a participant changed jobs, stopped working, or decreased work hours. Perspectives on disclosure were affected by the perception of stigma and discrimination, as well as the need for workplace accommodations. Overall, participants believed that the routine of a job and feeling useful benefited their health. Research limitations/implications – The nature of the research was not medical and the paper did not collect participants’ medical records. The paper relied on self-report for diagnoses of diabetes and co-morbidities as well as unrelated health conditions. Although the participants lived in a variety of urban, suburban, and rural settings, the findings do not reflect the ways in which differences in geography may have influenced participants’ experience. A focus of future research might be the role played by geographic location in the experience of managing diabetes at work. Also, the majority of employed participants worked for small employers. Future research might include a focus on participants managing diabetes while working for larger employers, who may have greater resources and staffing to devote toward implementing changes in workplace policy. Originality/value – The paper considers the preference that many participants have for working and being productive rather than not working, including those with secondary conditions as well as diabetes. The number of participants (n=45) is relatively large for a qualitative interview study. The longitudinal nature of the study allowed for a follow-along opportunity that yielded a rich source of data.

In the United States, employment experiences of people with intellectual and developmental disabilities (IDD) have been dominated by discrepancies between recent policy shifts promoting integrated employment for people with IDD and the stagnation of the employment rate in integrated settings for this population. Although there is no direct source for labor force participation for individuals with IDD in the general population, data from the National Core Indicators Project suggest that, in 2015–2016, only 19% of working-age adults supported by state IDD agencies worked in one of the three forms of integrated employment—group-supported, individual-supported, or competitive (individualized and without supports). Twelve percent (12%) worked in competitive or individual-supported employment, and 7% worked in group-supported employment (Hiersteiner, Bershadsky, Bonardi, & Butterworth, 2016). In addition, individual employment supports have not been implemented with fidelity to a consistent model or set of expectations, and participation in nonwork services has grown rapidly (Domin & Butterworth, 2013; Migliore et al., 2012; Winsor et al., 2017).