In her compelling essay, “A Future We Must Dare to Imagine” in the August 2020 print edition of JAMA Neurology, Dr. Kate Martin of the Kirk Kerorian School of Medicine stresses there is much more to be done when it comes to the care and treatment of some of our most vulnerable citizens, particularly those with intellectual disabilities.
The essay was printed in the peer-reviewed American Medical Association journal not long after the death of her 49-year-old brother, Michael, who was born with a highly symptomatic form of intellectual disability.
The article points out that studies published in the Disability and Health Journal and the American Journal of Public Health show that “despite being at higher risk for chronic health conditions, such as diabetes, hypertension and heart disease, (the intellectually disabled, and people with all forms of disability) receive fewer cholesterol screenings, blood pressure checks and other forms of preventive healthcare.”
She continues, “(these disparities) based solely on being a member of a socially disadvantaged group, are injustices.”
Injustices, she says, that can be overcome through the development of “new solutions.”
You don’t have to be a genius to understand that the creation of “new solutions” takes work and commitment by many people, medical professionals and concerned citizens alike, throughout the U.S.
She ends the essay with, “I have no doubt that we will devise new solutions and become a more inclusive society in the process. Now is the time for a future we must all dare to imagine.”
Today, a little more than a year after penning her essay, Martin heads the new Down syndrome program at the medical school. It connects people with resources, offers care coordination, extends research opportunities, and will provide program clinical services in the future.
“Clinical services for those with Down syndrome are currently available for primary and specialty care through our UNLV Health healthcare providers,” Martin said, “but we also aim to provide annual screenings specific to Down syndrome directly through the program soon.
She noted that there are medical conditions that happen more often in adults with Down syndrome, particularly as they grow older, such as Alzheimer-type dementia, osteoporosis, and hypothyroidism. “Being able to detect these conditions early allows us to help prevent a fall or hip fracture. We aim to support people with Down syndrome — they experience accelerated aging — to and through a healthy aging process. Funding through grants and from concerned citizens in the community is important.”
Down syndrome is the most common identifiable cause of intellectual disability. A study has shown there are around 4,000 individuals living with the syndrome in Las Vegas.
The new program recognizes that people with an intellectual disability not only meet impediments in the delivery of healthcare but also when it comes to having access to reliable transportation, employment, and housing. “These social determinants of health can mean the difference between a life of self-determination and one of complete dependence on others,” Martin said, noting that the need for additional resources continues to grow as the lifespan of those with Down’s continues to increase. Life expectancy for those with the syndrome has grown from 25 years in 1983 to 60 years in 2020.
What Martin said helped make her decision to move forward quickly with a program revolving around Down syndrome was her work as a research mentor for third-year medical student Anthony Chang, whose sister has the syndrome, a genetic chromosome 21 disorder causing developmental and intellectual delays.
“He was very inspiring, very energetic about what he wanted to do through research,” Martin said. “We each saw a real need for such a program, particularly for those individuals no longer in (K-12) school where there are not as many resources.”
Because his 22-year-old sister does a large part of her communication nonverbally, Chang has been researching a variety of methods, partly through the Howard Hughes College of Engineering at UNLV, where assistive technology could make communication easier for her and others who are affected by the syndrome in much the same way.
Martin says Chang, now a volunteer medical student assistant with the program, also conducted focus groups with individuals connected to the Special Olympics and Opportunity Village, where nearly 2,000 people with intellectual and developmental disability receive services that develop life skills. “Anthony’s findings helped shape the creation of the Down syndrome program,” Martin said.
Chang said that when he was deciding to do his research component for medical school, he knew it had to be something meaningful, something that may be able to help his sister and others in a similar situation. “I needed a research mentor who cared. I had shadowed Dr. Martin and knew she did.”
Martin noted that Kirk Kerkorian School of Medicine Dean Marc Kahn was very supportive about the program. UNLV physical therapy professor Thessa Hilgenkamp and her lab team are leading studies on various types of exercises and physical activity that may prove to be beneficial. Active in engaging community members to participate in her studies, Hilgenkamp leads monthly educational sessions on a virtual platform for people with Down syndrome that includes a fitness lesson.
The Down syndrome program volunteer team also includes Samrawit Misiker and Diana Anguiano, recent UNLV graduates interested in attending medical school in the future, and Miah Strellnauer and Ahmed Nadeem-Tariq, students now in the UNLV Honors College who plan to pursue careers in medicine.
Martin recently responded to questions about Down syndrome and the medical school program that has been operative for about four months.
What kind of care coordination has been present for families dealing with Down syndrome?
There is a lack of care coordination services for adults with Down syndrome. Although there are a few care coordination programs offered by the state, they are for children, so the adult population is often forgotten.
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.
During a recent meeting with the parent group of the Down Syndrome Organization of Southern Nevada, there were requests for assistance with these services, specifically helping families cope with behavioral changes that can occur in people with Down syndrome. Our program tries to take away some of that frustration and confusion by doing the research for them and connecting them with resources.
What kind of work has the program been involved in since its inception in August?
People have reached out to us asking about day vocational/training programs, tutoring services, respite care, developmental activities, transportation, and navigating the Medicare system. We’ve received feedback from families that despite them living close by to some resources, they never knew about them.
For care coordination, because people with Down syndrome need to see various specialists throughout their life, we can refer families to UNLV Health and UNLV Dental School Special Needs Clinic. The care coordination is individualized, meaning that we take into account that person’s circumstances so we look for providers that accept insurance, provide services in Spanish, offer telehealth, and are interested in serving people with intellectual disabilities.
In order for the program to work best, we are forming relationships with local social service organizations that include Inclusion Fusion, The Garden Foundation, Opportunity Village, the Collaboration Center, and the Down Syndrome Organization of Southern Nevada so that we know where people should go for help.
How do you see the program evolving?
We are currently working on getting our clinical services up and running so that we can offer telehealth appointments … and in-person appointments, to people with Down syndrome. 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.