The first sentence of a recent article states, "It took Samantha Lesmeister's family four months to find a medical professional who could see that she was struggling with something more than her Down syndrome." Sadly, this type of diagnostic overshadowing, in which symptoms of another condition are attributed to Down syndrome, is an all too common experience for many people with Down syndrome.
The article goes on to describe the challenges that Samantha and her family faced when trying to get comprehensive medical care. Thankfully, they were able to go to a clinic for adults with Down syndrome at the University of Kansas Health System in Kansas City, Kansas, about 80 miles from their home, where they received excellent care from the clinic's nurse practitioner, Moya Peterson, PhD, FNP-BC.
Unfortunately, most adults with Down syndrome do not have access to a specialty clinic like Samantha. A study published in 2021 estimated that Down syndrome specialty clinics provide care for less than five percent of adults with Down syndrome in the United States. One of the reasons that there are not more clinics is funding. We estimate that patient fees (paid through private insurance companies, Medicaid, Medicare, and self-pay) cover about 40 percent of the cost of running our clinic, the Advocate Medical Group Adult Down Syndrome Center. Advocate Health (our organization) and generous donors make up the difference and make it possible for our clinic to remain open.
What can be done to help the 95 percent of adults with Down syndrome who do not have access to a specialty clinic get comprehensive and compassionate medical care? This is an issue that the Down Syndrome Medical Interest Group-USA (DSMIG) is working hard to address. DSMIG is an organization of health care professionals who provide care for individuals with Down syndrome of all ages. Part of their mission is to educate health care professionals who do not have experience in caring for people with Down syndrome. They envision a world where all health care professionals have the knowledge to provide excellent care for people with Down syndrome. The providers at our center are members of DSMIG and are grateful for the opportunity to learn from and with other health care providers in the organization.
One of DSMIG's newest initiatives is Down Syndrome Project ECHO. It is a virtual meeting during which health care professionals can consult with DSMIG members about the care of individuals with Down syndrome for whom they are providing care. The meetings are held each month. This is a great resource to share with your health care providers. Additional resources for providers are also available in our Resource Library.
Sharing information is an important step in improving medical care for people with Down syndrome. We are grateful for the opportunity to participate in this process. We are also very appreciative of all of you who read our materials and then share them with people with Down syndrome, their families and caregivers, and health care professionals.
Learn more about the Adult Down Syndrome Center.
Learn more about the Down Syndrome Medical Interest Group-USA.