A lasting impact for patients with Down syndrome

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A lasting impact for patients with Down syndrome
Dr. Brian Chicoine

From serving a small number of patients just two mornings a month in 1992 to more than 6,000 patient encounters in 2021, the Adult Down Syndrome Center has evolved tremendously since its founding. As the Center celebrates its 30th anniversary, we look at its impactful evolution with co-founder, Dr. Brian Chicoine.

The number of clinics serving adults with Down syndrome in the United States and across the world is very small. One study found only 5% of people with Down syndrome have access to specialty care. In the early 1990s, Sheila Hebein, the Executive Director of the National Association for Down Syndrome at the time, saw a need for health services for those with Down syndrome and approached Dr. Seymour Metrick, who served as Chair of Pediatrics at Advocate Lutheran General Hospital, to help. Families received quality Down syndrome care in childhood but were struggling to find the same quality of care in adulthood.

Dr. Chicoine had recently returned from private practice to Advocate equipped with the knowledge of caring for adults with intellectual disabilities. With this experience in mind, Dr. Metrick tasked Dr. Chicoine with creating and leading a center focused on providing health services to adults with Down syndrome.

“Initially, we served people only as outpatients in the office,” said Dr. Chicoine. “Now, we provide care to our patients through multiple channels, including hospital admission at Advocate Lutheran General, home visits and serving residents with an intellectual disability at a local nursing home.”

While the Center began with three team members practicing out of the Family Medicine wing at Advocate Lutheran General, it has expanded to a team of 15 operating out of a separate home-like building on its campus. The Center’s mission is to enhance lives by providing comprehensive, holistic, community-based care and services using a team approach. The Center focuses on the physical, mental and social well-being of people with Down syndrome, along with education and research.

There are thousands of stories of patients finally getting the correct treatment thanks to the efforts of the Center, but one particular story is a favorite for Dr. Chicoine.

“My favorite is the issue of self-talk. We were seeing a lot of patients who were treated for psychoses primarily because they talked to themselves. We figured out this was a common tool used by people with Down syndrome to help themselves learn, figure out problems, review their day, make decisions, deal with boredom and many other routine tasks. There was so much relief for families realizing self-talk was not abnormal and was healthy in most situations,” said Dr. Chicoine. This discovery established the Center as a leader in the field as they began communicating their finding through conferences, websites and other key communications.

Dr. Chicoine graduated from Loyola University of Chicago Stritch School of Medicine and completed his Family Medicine residency at Advocate Lutheran General. He serves as a Family Medicine faculty member at Advocate Lutheran General in addition to his work at the Adult Down Syndrome Center. Dr. Chicoine has provided medical care for adults with intellectual disabilities for over 30 years. His expertise has been showcased and written extensively, including two books, on caring for adults with Down syndrome. He also serves in a leadership role developing essential educational opportunities and works collectively with a group of experts to consult on cases for the Down Syndrome Medical Interest Group.

That experience and commitment to patients with Down syndrome has led the Center to impeccable growth and leadership in the worldwide community.

Today, Dr. Chicoine has an eye toward the next 30 years with hopes of expanding research, patient care, educational resources and a large-scale data collection to facilitate the study and care of patients with Down syndrome. “The need for our clinic to provide health care is clear. We’ve learned a great deal over the last 30 years and are in a unique position to share so much information about the health of people with Down syndrome. We see this as both an opportunity and responsibility to share information with our patients, but also to benefit the 95% of people with Down syndrome that don’t have access to a specialized center.”

Celebrate the Adult Down Syndrome Center’s 30 years of service by viewing this video showcasing the impact of Dr. Chicoine, team members and donors throughout the years.

You can also support the Center by making a donation to its $5.5M fundraising campaign, At the Center of it all.