When her brother Michael passed away, Dr. Kate Martin of the Kirk Kerorian School of Medicine at the University of Nevada, Las Vegas, was inspired to provide better health care for those with intellectual disabilities like him. Martin’s studies of intellectual disabilities opened her eyes to the fact that those within the Down syndrome community are at a higher risk for chronic health conditions. Sadly, they rarely receive extra preventative care, making them more susceptible to conditions such as diabetes, high blood pressure, and heart disease.
Dr. Martin now oversees a new program at the University of Nevada, Las Vegas, providing resources and care coordination for those with Down syndrome. Eventually, the program aims to provide clinical services tailored to the specific needs of individuals with Down syndrome as well.
A third-year medical student who works with Martin at the university, Anthony Chang, has also been a driving force behind the program. Chang’s sister was born with Down syndrome, and his interactions with her led him to focus his research on assistive technology for nonverbal communicators. He realized there was a great need for increased support for those with Down syndrome, especially as they age out of the school system and have fewer resources available to them.
“The main problem that we’ve noticed is that families are left by themselves to navigate all the aspects of their loved one’s health and wellbeing, which can be overwhelming because they are often dealing with their own health issues. Although the ‘big things’ such as physicians, speech therapists, and other providers may be touched on by their primary care provider, the ‘little things,’ such as support groups, social skills training, tutoring, and respite care are left to families to figure out.”
Martin and Chang hope that the new program can start to fill that void, not just by providing more specialized health care, but also connecting individuals with Down syndrome with services such as transportation, employment, and housing, to help equip them to live independently. As they expand, they also plan to offer more services to patients within the Las Vegas area:
“We also want to create our own information guides to demystify and help families understand concepts related to Medicaid/Medicare and how to support people through the life course of Down syndrome at each developmental stage.
We’re also learning about how the Regional Transportation Commission’s Paratransit Program works, so we can better understand gaps in transportation services and suggest improvements. Finally, as much as we may evolve and grow, we will aim to stay focused on the needs and concerns of our community through the people we serve.”