medical school program makes a difference for families affected by Down syndrome | Information Center
In his compelling essay, “A Future We Must Dare to Imagine” in the August 2020 print edition of JAMA NeurologyDr Kate Martin of the Kirk Kerorian School of Medicine points out that there is still a lot to be done when it comes to the care and treatment of some of our most vulnerable citizens, especially those with developmental disabilities.
The essay was printed in the peer-reviewed journal American Medical Association diary shortly 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 Handicap and Health Journal and the American Journal of Public Health show that “despite their increased risk of chronic diseases, such as diabetes, hypertension and heart disease, (people with intellectual disabilities and people with all forms of disability) receive fewer cholesterol tests, blood tests and blood pressure and other forms of preventive health care. “
She continues: “(these disparities) based solely on belonging to 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 creating “new solutions” takes work and commitment on the part of many people, healthcare professionals and concerned citizens, across the United States.
She ends the essay with: “I have no doubt that we will design new solutions and become a more inclusive society in the process. The time has come for a future that we must all dare to imagine.
Now, just over a year after writing his essay, Martin is leading the new Down syndrome program at medical school. It connects people to resources, provides coordination of care, expands research possibilities, and will provide clinical program services in the future.
“Clinical services for people with Down syndrome are currently available for primary and specialist care through our UNLV Health providers,” said Martin, “but we are also aiming to offer screenings soon. annuals specific to Down syndrome directly through the program.
She noted that there are medical conditions that occur more often in adults with Down syndrome, especially as they age, such as Alzheimer’s type dementia, osteoporosis and hypothyroidism. “Being able to detect these conditions at an early stage allows us to help prevent a hip fall or fracture. Our goal is to help people with Down syndrome – they experience accelerated aging – in and through a healthy aging process. Funding through grants and concerned citizens in the community is important.
Down syndrome is the most common identifiable cause of intellectual disability. A study has shown that approximately 4,000 people live with the syndrome in Las Vegas.
The new program recognizes that people with developmental disabilities face not only barriers in delivering health care, but also in accessing reliable transportation, employment and housing. “These social determinants of health can mean the difference between a life of self-determination and a life of total dependence on others,” said Martin, noting that the need for additional resources continues to grow as the lifespan of people with Down’s syndrome continue to increase. The life expectancy of people with the syndrome has increased from 25 years in 1983 to 60 years in 2020.
What Martin said helped her make her decision to move quickly with a program focused on Down syndrome was her job as a research mentor for the third-year medical student. year Anthony Chang, whose sister has syndrome, a genetic disorder of chromosome 21 causing developmental and intellectual delays. .
“He was very inspiring, very energetic about what he wanted to do with research,” said Martin. “We have each seen a real need for such a program, especially for people who no longer attend school (K-12) where there are not as many resources.”
Since her 22-year-old sister communicates largely non-verbally, Chang has researched a variety of methods, in part through UNLV’s Howard Hughes College of Engineering, where assistive technology could facilitate communicating to her and others affected by the syndrome in the same way.
Martin says Chang, now a volunteer medical student assistant for the program, has also hosted focus groups with people related to the Special Olympics and Opportunity Village, where nearly 2,000 people with intellectual and developmental disabilities receive services that develop. life skills. “Anthony’s discoveries helped shape the creation of the Down syndrome program,” said Martin.
Chang said that when he decided to do his research component for medical school, he knew it had to be something meaningful, something that could help his sister and others in a similar situation. “I needed a research mentor who cared about me. I had followed Dr Martin and I knew she was doing it.
Martin noted that Kirk Kerkorian School of Medicine Dean Marc Kahn was very supportive of the program. UNLV physiotherapy professor Thessa Hilgenkamp and her lab team are researching various types of exercise and physical activity that may be of benefit. Active in engaging community members to participate in his studies, Hilgenkamp runs monthly educational sessions on a virtual platform for people with Down syndrome that includes a fitness lesson.
The Down Syndrome 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 at UNLV Honors. College who are considering pursuing a career in medicine.
Martin recently answered questions about Down syndrome and the medical school program which has been in place for about four months.
What type of care coordination has been put in place for families with Down syndrome?
There is a lack of care coordination services for adults with Down’s syndrome. While there are a few government-offered care coordination programs, they are aimed at children, so the adult population is often overlooked.
The main problem we have noticed is that families are left on their own to navigate all aspects of the health and well-being of their loved ones, which can be overwhelming as they often have to deal with their own issues. health. While the “big things” such as doctors, speech-language pathologists and other providers can be addressed by their primary care provider, the “little things” such as support groups, social skills training, tutoring and respite care is left to the families to realize.
In a recent meeting with the parent group of the Down Syndrome Organization of Southern Nevada, there were requests for assistance for these services, especially in helping families cope with the behavioral changes that may occur in the family. people with Down’s syndrome. Our program tries to eliminate some of this frustration and confusion by researching them and connecting them with resources.
What type of work has the program been involved in since its inception in August?
People reached out to us with questions about day job training programs, tutoring services, respite care, development activities, transportation, and navigating the Medicare system. We have received comments from families that although they live near some resources, they have never known them.
For coordination of care, because people with Down’s syndrome need to see various specialists throughout their lives, we can refer families to UNLV Health and UNLV Dental School Special Needs Clinic. The coordination of care is individualized, which means that we take that person’s situation into account so that we look for providers who accept insurance, provide services in Spanish, offer telehealth and are interested in serving people with intellectual disabilities.
To make the program work at its best, we are building 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 we know where people should be. go. to help.
How do you see the program evolving?
We are currently working on setting up our clinical services in order to be able to offer telehealth appointments… and in person appointments, to people with Down’s syndrome. We also want to create our own informational guides to demystify and help families understand Medicaid / Medicare concepts and how to support lifelong people with Down syndrome at each stage of development.
We also learn how the paratransit program of the Regional Transport Commission works, so that we can better understand the gaps in transport services and suggest improvements. Finally, as much as we can evolve and grow, we aim to stay focused on the needs and concerns of our community through the people we serve.