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Aging Poses New Challenges For Those With Special Needs
CHICAGO — For more than 20 years, Tricia McGee has lived, worked and taken classes at Misericordia, a sprawling campus serving people with developmental disabilities on Chicago’s North Side.
But when the 56-year-old woman with Down syndrome began forgetting her work schedule, becoming disoriented around campus and feeling too confused to do her job in the mailroom, administrators at the Catholic facility moved her to a new program designed to meet a need that advocates say will only be more pressing in the years ahead: caring for people with disabilities as they age.
“It was such a relief,” Tricia’s sister-in-law, Anne Marie McGee, said of Quinlan Terrace, a $15 million residential program at Misericordia that opened in May. “The fine-tuning would be lost if she just went to a nursing home, where she’d be cataloged as one of the lower achievers.”
At Quinlan Terrace, while some activities are similar to those offered at other senior facilities — playing bingo, flipping through scrapbooks and doing memory exercises — staff members keep in mind nuances that are especially important for people with disabilities. For McGee, who thrives on routines, staying at Misericordia allowed her to remain at the place she considers home, while keeping her in the company of peers who know firsthand how hard she has worked to learn skills such as counting and writing her name.
Advocates and service providers say it’s one of a variety of care options that will be needed with increasing urgency as people with disabilities live longer than ever before.
In 1983, the average life expectancy for a person with Down syndrome was 25. Today, it’s 65 to 70, fueled largely by the mastery of a surgical procedure that corrects a heart defect present in 1 out of 2 people with Down syndrome, said Sara Weir, president of the National Down Syndrome Society, a nonprofit organization based in New York.
“It’s a new frontier,” Weir said. “We just don’t have enough resources in this area.”
As the first generation of individuals with disabilities reaches ages not seen before, the medical community is still catching up. Most skilled nursing facilities are still made up of residents without disabilities, so people with disabilities may be better suited to an environment where caregivers are accustomed to taking their special needs into account.
“I don’t know that we understand what (people with disabilities) are going to be like when they’re 40 and 50 and 60,” said Dr. Keith Veselik, associate professor for internal medicine at Loyola University Health System. “I think we have a lot to learn.”
At Misericordia, a 45-year-old campus that serves 500 residents with developmental and physical disabilities, signs of aging were hard to miss in residents whom staff had known for decades. Participants who were once active in the nonprofit’s on-campus businesses or jobs program got lost on the way to work. Others, once social and gregarious, became quiet and stopped participating in groups. Bifocals and gray hair became commonplace, administrators said.
But the facility didn’t have a system in place to care for residents’ problems related to aging.
“It was a source of tremendous stress for our staff and for all of the families,” said Michael Diaz, developmental training administrator at Misericordia, who noted that in some instances, signs of Alzheimer’s disease and other age-related illnesses appeared early and swiftly; in others it was barely recognizable over a long stretch of time.
When she died in 2012, Marie Quinlan, a former member of the Misericordia Women’s Board, left an $8.5 million gift to Misericordia on behalf of herself and her late husband, George, who had died previously. The gift was specifically earmarked for addressing the aging dilemma. An additional $30 million was raised for construction and continued operation costs.
Before Quinlan Terrace opened its doors, staff at Misericordia had to turn away Monica Laskey, a then-65-year-old former resident, after a hip injury because the nonprofit wasn’t yet equipped to deal with aging-related problems. It was a heartbreaking decision, said Lois Gates, assistant executive director for Misericordia.
“If Quinlan Terrace was a reality at the time when Monica Laskey was with us, we could have continued to meet her needs,” Gates said. “We now have the full continuum of care to offer our residents.”
The project broke ground in 2013, and the four homes that accommodate 60 residents were completed two years later.
“The aging population is becoming a reality,” said Sister Rosemary Connelly, executive director for Misericordia. “It’s the journey of life, and we really feel privileged that we can see their journey with them.”
Adults with Down syndrome are at greater risk than others to contract Alzheimer’s because the conditions are genetically linked, said Brian Chicoine, medical director of the Adult Down Syndrome Center at Advocate Lutheran General Hospital as well as medical director for Quinlan Terrace. Some research shows that an extra 21st chromosome, which is present in people with Down syndrome, adds to the risk of developing Alzheimer’s.