How Having Down Syndrome Affects Adulthood

It used to be that adults with Down syndrome weren’t really given a chance. In the early 1900s, a person with Down syndrome was expected to live fewer than 10 years. Today, many people with the genetic disorder live to their fifties and sixties. (1)

“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, medical director of the Down Syndrome Center of Western Pennsylvania and a professor of pediatrics at the University of Pittsburgh School of Medicine.

But that thinking doesn’t really stand anymore, he says. Many people with Down syndrome today do work and have independence. That’s not to say adulthood with Down syndrome does not come with its challenges, nor does it necessarily look the same as adulthood for people without the condition. Here’s some more information about what to expect.

People with Down syndrome have a wide range of capabilities, 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 to go about their day-to-day activities. Some drive themselves in a car, while others are more challenged.

Because many people with Down syndrome get around easily, those individuals may be able to live on their own, whether they’re completely independent and living by themselves, or they live in a group setting with friends or family, Dr. Vellody says. “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.

There are many organizations and agencies around the country that help adults with disabilities find appropriate living arrangements. (2) “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 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.

After high school, people with Down syndrome do have the option of continuing their education. Some colleges, such as Eastern New Mexico University in Roswell, offer programs designed for people with disabilities like Down syndrome. (3) And the nonprofit Ruby’s Rainbow provides scholarships for students with Down syndrome.

Other 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 (NDDS) categorizes the following three types of employment available to people with Down syndrome: (4)

1. Competitive Employment These positions are similar to the opportunities that anyone looking for a job would have. The difference is a person with Down syndrome might work closely with a job coach or employment specialist to slowly ease into the position. Often, the person with Down syndrome will benefit from having a follow-up specialist who checks in to see how things are going.
2. Supported Employment This is similar to competitive employment but has a long-term support system in place to help the individual succeed in the role. (Note: There may be time limits on how long support will be available. Another note: Both competitive and supported employment occur in the community in real work locations.)
3. Sheltered Employment Being employed in this type of setting usually involves working with other people with disabilities to perform administrative tasks, such as stuffing envelopes. Critics say these settings promote segregation between people with disabilities and those without.

Just like with anybody, the key is finding the right role for the individual’s personality. For instance, a person with sensory issues likely won’t do well in a loud office space, and a person who needs to move around a lot won’t be well suited to a job that’s mainly sedentary, according to NDDS.

“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, 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.

Data from a 2015 survey that examined the employment status of 511 Americans with Down syndrome found that more than half were employed, but only about 3 percent were paid, full-time employees. (1) The most common types of jobs were in restaurant or food service (19 percent), office settings (19 percent), cleaning (14 percent), and grocery stores (12 percent).

One area that wasn’t mentioned often was technology, even though 69 percent of adults with Down syndrome reported they use computers. Vellody thinks that’s an area with future job opportunities. People with Down syndrome “do really well in computer work,” he says. “You hand somebody with Down syndrome an iPad, and they can figure it out faster most of the time than most of us could.”

Growing up, 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 a lot of patients he sees could use additional support in mastering life skills, such as cooking and cleaning. But often they’re out of luck unless another medical issue arises, such as a broken hip, at which point insurance might cover a therapist.

As people with Down syndrome age, it’s important to continue getting 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. (5)