Feature Issue on Employment and IDD

Coworkers on the job at a local café.

Compared with adults without disabilities, adults with Down syndrome are more likely to be unemployed and/or underemployed. Research is needed to identify and mitigate the barriers to employment among adults with Down syndrome. To this end, we conducted a national survey study with 101 caregivers of adults with Down syndrome who had exited high school in the last five years. The purpose of our survey was to learn about the employment experiences of young adults with Down syndrome. Most participants identified as white mothers of individuals with Down syndrome and had college degrees. We recognize the limited diversity reflected in our participant sample and address it in our recommendations for future research.

We found high rates of unemployment and underemployment. Specifically, 48% of young adults with Down syndrome were unemployed, meaning they did not have a paid job. Of those, approximately two-thirds were volunteering in the community. Thus, one-third of young adults with Down syndrome who were unemployed had no vocational or volunteering activities.

Of the 52% of young adults who were employed, 69% worked in community-based settings. About half of these individuals worked less than 10 hours per week. Notably, 31% of the young adults who were employed worked in sheltered vocational settings; the majority of these individuals worked more than 10 hours per week. The young adults had a variety of job types, with the majority doing cleaning tasks, such as laundry, dishes, or busing tables, or food prep.

Barriers to Employment

Caregivers identified several barriers to employment, including challenges in finding work, limited transportation to workplaces, insufficient job supports, and few opportunities for work in inclusive environments. Some caregivers reported having mixed satisfaction with the employment of their young adults with Down syndrome.

For example, one parent wrote: “[I] sometimes wonder if he [a son with Down syndrome] should get a job with more hours and more diverse work tasks, but he does seem to like his jobs even though they are the traditional types of jobs people with disabilities have.”

Other barriers to employment included limited employment opportunities, lack of community-based employment, insufficient paid work opportunities, poor job fit for the individual with Down syndrome, and lack of fulfillment through work.

Factors That Improve Outcomes

Most caregivers reported that their young adults with Down syndrome found employment through their parents, a vocational program, or another relative or friend. Among the individuals with Down syndrome who were employed, their caregivers reported that supportive organizations, caregiver involvement, job training and skill development, and employment and volunteer experiences for young adults with Down syndrome were key to improving post-school outcomes. A caregiver wrote: “Many of the contacts I have made with not-for-profit organizations over the years have accepted her [a daughter with Down syndrome] and let her volunteer for them. They know her and accept her. Many organizations are not willing to take a risk on someone who is not [considered] ‘normal’.”

Other factors that facilitated positive post-school outcomes included social and community support for young adults with Down syndrome, social and community support for caregivers of young adults with Down syndrome, access to school resources, and caregivers receiving education about transition planning and how to navigate the service delivery systems.

For example, one caregiver said “In preparing to transition from high school to post-high school services, it would have been helpful to have a clear, succinct, step-by-step guide to learn what to do and who to contact. We received all the information (we think) but it was through detective work, guidance counselor, The Arc, and working through contradicting information from the state and federal agencies.”

Perspectives on Next Steps

There are multiple directions for next steps. With respect to research, we suggest several ideas. More research is needed to explore the employment experiences of individuals with Down syndrome. It is especially important that we center the perspectives of adults with Down syndrome by including them as direct respondents in research. By understanding their experiences, we can identify barriers and facilitators to employment that may differ from the barriers and facilitators identified by their caregivers. Additionally, it is important to secure a more representative sample of research participants, especially in relation to race, ethnicity, educational background, location (e.g., rural versus urban), and annual household income. Employment experiences may differ across such demographic dimensions. By having a more representative sample, the findings can be generalized to provide supports that meet the diverse needs of the Down syndrome community.

Additional research is also needed to develop and test interventions to improve employment outcomes for adults with Down syndrome. Such interventions should attempt to mitigate the barriers to employment and leverage the facilitators. Notably, interventions should be developed by eliciting feedback directly from adults with Down syndrome, their families, and relevant professionals.

Longitudinal research is also needed. Our study captured one point in time—the first five years after exiting high school. For all individuals, regardless of whether a disability is present, employment changes over time. It is important for longitudinal data to be collected to understand how employment ebbs and flows over one’s lifespan. Such data can help pinpoint specific time periods when the odds of unemployment or underemployment are greater and then target those periods for intervention.

There are also several next steps in terms of practice. Caregivers identified the need for supports and resources that can reduce societal and systemic barriers. To that end, special education teachers can share resources and training information with families so they can be more educated and involved in transition planning. Organizations can do more outreach to families of youth and young adults with Down syndrome so they are aware of available information about the transition to employment. Relatedly, accessible information about transition planning and employment specifically should be provided to youth with Down syndrome so they can be meaningfully involved in developing and pursuing their own employment goals.

Recommended changes also relate to policy. Our study suggests that, as young adults with Down syndrome immediately exit high school, they are less likely to be employed. Although several policies, including the Individuals with Disabilities Education Act, and the Workforce Innovation and Opportunity Act focus on improving employment for youth with disabilities, our study suggests that these policies fall short. Specifically, given the high unemployment rates in our study, it seems that young adults with Down syndrome are not retaining meaningful employment. More support may be needed for students with Down syndrome, especially during transition planning in school and immediately after the individual exits high school. This additional support should focus on ensuring that the perspectives of individuals with Down syndrome are incorporated in their transition planning and that they have meaningful employment opportunities.