It used to be that adults with Down syndrome weren’t really given a chance. Before the 1980s, an overwhelming majority of people with Down syndrome were institutionalized in the United States simply for being born with a disability.
“There’s this old thought that somebody with Down syndrome won’t be able to get a job or live independently,” says Kishore Vellody, MD, a professor of pediatrics at the University of Pittsburgh School of Medicine and the medical director of the Down Syndrome Center of Western Pennsylvania.
But that thinking doesn’t really stand anymore, he says. Many people with Down syndrome today work, attend school, and live at home. That’s not to say adulthood with Down syndrome doesn’t come with challenges. It also may not look the same as adulthood for people without the condition. Here’s some more information about what to expect.
Some Adults With Down Syndrome Can Live on Their Own; Others Live in a Group Environment
People with Down syndrome have a wide range of capabilities, says Brian Chicoine, MD, a family medicine specialist with a focus on adults with Down syndrome at Advocate Medical Group in Park Ridge, Illinois. And that means the best options available for some people with the developmental disorder will not necessarily be good options for others. Some individuals have no problem taking the train or bus for their day-to-day activities. Some drive themselves in a car, while others need more support.
Because many people with Down syndrome get around easily, those individuals may be able to live on their own. They may be completely independent and live by themselves, or they may live in a group setting with friends or family, says Dr. Vellody. “There are many living-situation opportunities now [for people with Down syndrome] that we never knew before because they were never given those opportunities,” he says.
Many organizations and agencies around the country help adults who have disabilities find appropriate living arrangements. “Options range from highly staffed homes that are supervised 24 hours per day to supportive living situations, where staff may provide assistance 15 to 20 hours per week,” says Kathy Higgins, who has worked as a family liaison and early intervention evaluation coordinator at the Arc Westchester’s Children’s School for Early Development in Hawthorne, New York.
Dr. Chicoine estimates that about half of the patients at the adult Down syndrome center where he works live in a family home with parents or siblings, and the other half live in a supported group living environment. “We do have a handful of individuals who live completely on their own — but more are living with family or a professional organization,” Chicoine says.
People With Down Syndrome Can Go to College and Hold Jobs
After high school, people with Down syndrome have the option to continue their education. Some colleges, such as Eastern New Mexico University in Roswell, offer programs designed for people with disabilities like Down syndrome. Also, nonprofits like Ruby’s Rainbow provide scholarships for students with Down syndrome.
People with Down syndrome may decide to find a job once they reach adulthood. Just as there are agencies to help with housing options, there are organizations dedicated to helping people with Down syndrome find work.
The National Down Syndrome Society (NDSS) categorizes the following three types of employment available to people with Down syndrome.
Competitive Employment A person with Down syndrome might work closely with a job coach or employment specialist to slowly ease into their new role. Often, the person with Down syndrome will benefit from having a follow-up specialist who checks in to see how things are going.
Supported Employment This is similar to competitive employment but includes a long-term support system to help the individual succeed in the role. (Note: The support may be limited to a certain period of time because of resource limitations.) Both competitive and supported employment occur in the community in real work locations.
Sheltered Employment Being employed in this setting usually involves working alongside others with disabilities on administrative tasks, like stuffing envelopes. Critics say these settings promote segregation between people with disabilities and those without.
As with anyone, the key is finding the right role for the individual’s personality. For instance, a person with sensory issues may not thrive in a bustling office environment. On the other hand, a person who needs to move around a lot won’t be well-suited to a mainly sedentary job, according to NDSS.
“It’s important for employment programs to find out the strengths of the individual and find opportunities that make them happy, that they can be successful at, and that they look forward to going to,” says Higgins.
Michelle Sie Whitten, the cofounder, president, and chief executive officer of Global Down Syndrome Foundation in Denver, suggests asking a few basic questions to help determine which role is the best fit for an individual:
How am I going to get there?
Can I get there on time?
Am I comfortable with the type of work?
Am I confident I can do it?
What other support will I need, and will the employer offer that support?
Volunteer work can also be a good option for someone who’s more interested in receiving training or an opportunity to engage in activities outside the home rather than just earning wages.
Support Services for Adults With Down Syndrome Can Be Limited; Routine Medical Care Is Important
People with Down syndrome likely have a team of therapists they meet with regularly. But Chicoine says these resources often go away as people get older.
“Therapies to treat Down syndrome per se, as you’d see in a young child, are not typically available for adults,” he says. He says many patients he sees could use additional support in mastering life skills, such as cooking and cleaning. But often they can’t get that support unless another medical issue arises, such as a broken hip, when insurance may then cover a therapist.
As people with Down syndrome age, it’s important to continue with routine medical care and checkups. People with the genetic disorder are at higher risk for complications, including gastrointestinal problems, sleep apnea, obesity, Alzheimer’s disease, leukemia, and other health problems. Maintaining a healthy lifestyle and seeing a doctor regularly are some of the best ways to identify complications early and treat them.
The Takeaway
Many organizations help individuals with Down syndrome find appropriate living arrangements, attend school, maintain employment, and receive proper support.
Finding the right role for any individual’s personality is key, especially for those with disabilities like Down syndrome.
Therapy services may be limited for adults with Down syndrome. It’s important to continue routine medical care as you age.
EDITORIAL SOURCES
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Allison Buttarazzi, MD, is board-certified in internal medicine and lifestyle medicine, and is a certified health and well-being coach. In her primary care practice, Dr. Buttarazzi focuses on lifestyle medicine to help her patients improve their health and longevity, and her passion is helping patients prevent and reverse chronic diseases (like heart disease, high blood pressure, and diabetes) by improving their lifestyle habits.
She is a graduate of Tufts University School of Medicine and completed a residency at Maine Medical Center. Diagnosed with celiac disease during medical school, she realized the power of improving one's health through diet and lifestyle habits, which she later incorporated into her practice.
Moira Lawler is a journalist who has spent more than a decade covering a range of health and lifestyle topics, including women's health, nutrition, fitness, mental health, and travel. She received a bachelor's degree from Northwestern University’s Medill School of Journalism and lives in the Chicago suburbs with her husband, two young children, and a giant brown labradoodle.
