Is the community up to providing needed resources?
Deborah Jeanne Sergeant
People with Down syndrome are living a lot longer.
Research indicates that in 1950 the median life expectancy for someone with Down syndrome was age 4. Life expectancy for someone born with the condition in the 2010s is 58.
Although the availability of abortion in current times allows more women to choose to abort a fetus with Down syndrome, the increase in the number of women delaying pregnancy until their 30s and 40s — a risk factor for Down syndrome — has led to an increase of people with Down syndrome.
Are healthcare providers and the community in general ready to meet their unique needs in middle age and older adulthood?
Many adults with Down syndrome and other developmental delays struggle to find employment.
Kristin Housel, speech language pathologist and director of operations at GiGi’s Playhouse Rochester, said that this can provide an “opportunity for employers looking for good workers.”
“They’re very capable. We just piloted a career development program. With the right support and training, they’d be assets to many businesses,” she added.
Working a job helps bring additional meaning and personal pride to the lives of people with Down syndrome, but during the pandemic, many employment training programs lost workers.
“Some are not as functional or impactful as they should be,” she added. “We should be providing education and support beyond school and academics. That’s the real world. Individuals with Down are very employable. They just need resources and tools. They make take a different route to get there, but they can work jobs.
“Finding something that’s meaningful like volunteering or a paid position that keeps them going helps. You have to keep pushing and having high expectations. Finding the right fit for someone will help them want to be successful.”
She hopes that more businesses start programs to hire and coach people with Down syndrome.
Housing represents another issue. As someone with Down syndrome achieves greater independence, a group home or other arrangement can be an ideal situation. But Housel said that’s an area that “still needs to be addressed” as these homes are lacking in the area.
Because some people with Down syndrome are outliving their parents, setting up guardians for their care should be a vital part of the parents’ end-of-life planning. Housel said that many parents focus so hard on academics and schooling that they ignore this aspect of planning — and some financial planners neglect to mention it.
Social workers, service coordinator, advocates and navigators may help, but Housel said that they are overwhelmed with people needing guidance.
People with Down syndrome have a few different medical needs than the general population owing to their physical differences. Living longer means that they also have a greater risk for age-related conditions.
“Now that as the population is growing older and is the least funded within the medical field, it’s a place where everyone needs to focus,” Housel said. “There are definitely things that come up like Alzheimer’s, dementia and regression disorder which can happen at any age but does happen in adulthood. Medical research funding is something that needs to be addressed.”