Down Syndrome: Imagine the Possibilities

In 1929, the average life expectancy for a person born with an extra 21st chromosome—with Down syndrome—was nine years. Just a generation ago, the average was 25 years. Today 80 percent of people born with Down syndrome live to 50 years and beyond, and the average is 60 years.^1,2

Most of the focus during those decades has been on children, and the results have been extraordinary. Years ago, parents whose newborn was diagnosed with Down syndrome were often advised to institutionalize the child. Even today, up to 90 percent of babies with a prenatal diagnosis of Down syndrome are aborted. Incredibly, even some groups that advocate for people with Down syndrome, such as the National Down Syndrome Society, take no position on abortion even though it remains the greatest threat to their constituency. Yet we know that while people with Down syndrome take longer to reach developmental milestones, they can indeed reach them to a level that enriches not only their own lives but their communities as well. In their early years all children change in ways that indelibly affect the rest of their lives, and they thrive to the extent they receive nurturing and feedback appropriate to their development.

Think of a newborn who cannot even lift her head and then fast-forward to age two or three, when she’s asserting her independence in the timeless language of toddlers: Me do it! Children with Down syndrome thrive in the same way by the same measure. All children must master motor, language, social and self-help skills to grow into confident adults. Now, thanks to medical advances, educational intervention and especially a growing appreciation for their unique gifts, people with Down syndrome are making that journey as well. Understanding their needs as they transition to adulthood is receiving greater attention.

Some challenges are common to all adults: fitting into a community, developing friendly and romantic relationships, managing leisure time, training for and finding work and living as independently as possible. Results vary for adults with and without Down syndrome. Employment is often a linchpin objective, one that opens doors to relationships, achievement and confidence. For adults with Down syndrome, that linchpin can be elusive. The US Department of Labor tracks unemployment of adults with disabilities—in 2014 the rate of those seeking work was 11.2 percent—but it does not separately track for Down syndrome. In January 2015 Libby Kumin and Lisa Schoenbrodt released Employment in Adults with Down Syndrome in the United States: Results from a National Survey, the only current US data specific to adults with Down syndrome.³ From 511 surveys returned by adults 17 and older, they examined paid and volunteer work, unemployment, types of jobs and job training, settings and satisfaction.

Among the respondents, 56.6 percent worked at paid jobs, but only 3 percent worked full time, 31-40 hours per week. Ten percent worked 21-30 hours and 26 percent worked 10-20 hours. The rest, 32 percent, worked fewer than 10 paid hours. Just over half held one job. The rest combined part-time jobs. Of paid employees, 64.6 percent worked in competitive environments, almost 21 percent worked in sheltered settings and 2.8 percent were self-employed. Almost 26 percent worked as volunteers. Including responses from volunteers, the average wage was $7.46 per hour, with a range of $0 to $14. The median was $8 per hour. Because they often understand far more than they can express, the employment potential of adults with Down syndrome may be underestimated. For example, 68.5 percent of the adults surveyed use computers but only 15.7 percent do so in paid jobs, and information technology training is rarely included in transition plans. Most respondents participated in training programs in high school, with most interning in food service (36 percent), cleaning and housekeeping (35 percent), retail (22 percent) and offices (21 percent). Consequently, most employed adults with Down syndrome work in what are called the “Five Fs”: food, filth, flowers, factories and filing; i.e., food service, janitorial work, landscaping, product assembly and office work.

Kumin and Schoenbrodt’s research shows that adults with Down syndrome are making progress. The sidebar on page five highlights three adults who show what can happen when training, support, determination and vision come together. Through research and advocacy, society has been pushed to look past preconceived notions of disability and appreciate the unique gifts of people with Down syndrome.

Their research also shows we have a long way to go. For example, many working adults benefit from having a mentor; for adults with Down syndrome, mentors, job coaches and ongoing training can be the critical difference between successful employment and missing out on a crucial part of adult life. Transition plans geared to each individual’s gifts, skills and interests—and seeing beyond the “Five Fs”—would help expand employment options. Some strides have been made at the federal level. A 2006 study cited by Kumin and Schoenbrodt showed that 77 percent of parents believed their adult children with Down syndrome could and would earn more if their federal benefits were not jeopardized. The December 2014 ABLE Act allows people with disabilities to use their earnings for qualified expenses without losing Medicaid and Supplemental Security Income benefits.

A 2013 poll by the Society for Human Resource Management found that 73 percent of US workers were generally satisfied with their jobs.⁴ Employed adults with Down syndrome have a slight edge: 75 percent of Kumin and Schoenbrodt’s respondents said they feel positive about their work, enjoying a sense of purpose, social interaction and having their own money. Those responses prove that adults with Down syndrome are, first and foremost, adults.

¹ http://www.bgcdownsyndrome.org/about.cfm. Accessed May 1, 2015.
² http://www.usatoday.com/story/news/nation/2013/05/01/life-down-syndrome-improving/2054953/. Accessed May 1, 2015
³ http://onlinelibrary.wiley.com/doi/10.1111/jar.12182/abstract. Accessed May 5, 2015.
⁴ http://www.shrm.org/Research/SurveyFindings/Documents/14-0028%20JobSatEngage_Report_FULL_FNL.pdf