Data shows just how necessary it is to ensure students who are working toward degrees in health and human services fields are educated to care for populations with intellectual and developmental disabilities (IDD) — who often face barriers when it comes to receiving treatment.
A study from 2021 found only 40.7 percent of physicians were very confident about their ability to provide the same quality of care to patients with disabilities as they do to patients without. And just 56.5 percent strongly agreed that they welcomed patients with disabilities into their practices.
The University of Maryland Schools of Medicine and Nursing Standardized Patient Program — housed in the School of Nursing (UMSON) — in partnership with Special Olympics Maryland (SOM) and Special Olympics International (SOI) — is working to ensure that the next generation of health care professionals is well prepared to work with and treat individuals with IDD.
The University of Maryland, Baltimore (UMB) is one of five universities in the country across four states to recently partner with the Special Olympics.
The Standardized Patient Program allows students to refine their clinical and communication skills with professional standardized participants (SPs). SPs are trained to portray a real patient in clinical instruction and assessment with students.
“Not only is this initiative expanding UMB’s inclusive and interprofessional curriculum, but it’s also breaking down barriers, biases, stigmas, and misconceptions, all while encouraging a shared commitment to inclusive health care,” said Rebecca Weston, EdD, MSN, RN, CNE, assistant professor at UMSON and principal investigator on the grant that funded the collaboration. “This partnership has enabled us to envision a future where people with intellectual disabilities consistently receive equitable and accessible health care.”
A Chance to Have a Voice
For the first time this spring, students across multiple disciplines at UMB participated in simulations with Health Messenger athletes who were hired to serve as SPs. Special Olympics Health Messengers are athletes specifically trained to talk about Special Olympics health programming and the impact Special Olympics has made in their lives.
This partnership increases the representation of populations with IDD in the SP Program and offers the opportunity for students to practice with the actual representative population, as opposed to someone simulating a population, said Nancy Budd Culpepper, MBA, director of the SP Program.
“I think in this situation in particular, it’s not something you would be able to simulate authentically,” Culpepper said. “We have wonderful folks that work for us [as SPs] with acting backgrounds that can take on a good bit, but I think when you’re working with special populations, it’s tough to give an authentic response,” she said, adding that it’s especially important for individuals who actually have a disability to be the ones providing feedback to students after a simulation training.
Prior to the simulation, students heard from Anne D. Williams, DNP ’12, MS ’86, BSN ’82, RN, CPHQ, FAAN, vice president of health service and education for SOI, who helped lay the groundwork for what challenges those with IDD face, especially when it comes to receiving health care.
Populations with IDD die 16 to 20 years prematurely because of undiagnosed and untreated conditions, said Williams, an alumna of UMSON. Due to the stigma that remains around those with disabilities, their quality of and access to care can be compromised.
The simulation students participated in during a recent training exercise involved interacting with both an existing SP, in the role of a friend or family member of the patient, and a Special Olympics Health Messenger, who portrayed the patient.
This dynamic is one that’s familiar for those who have IDD. Jimmy Tadlock, an SOM Health Messenger, said his mom attends his doctor’s appointments with him so he and the doctor are communicating effectively.
“Do not get me wrong, they are good doctors and dentists, but they talk doctor-speak that I do not fully understand,” Tadlock said. “They do not know I am missing things because I am quiet. This is my chance to help new doctors understand when their doctor-speak is not understood.”
Alexea Wentz, another Health Messenger, loved getting the chance to help prepare future doctors, nurses, and social workers.
“I think it's very awesome that we are able to help educate and share our experiences,” Wentz said. This type of training will help future health care and social services professionals understand how they can help individuals with disabilities in settings like doctor’s offices and emergency rooms, she added. “I really enjoyed [this event]. Speaking is one of my favorite things, and I like sharing my story and inspiring others.”
A Lesson in Collaboration
This more realistic version of an educational simulation particularly resonated with students.
School of Medicine student Juan Dalo said while he’s participated in SP simulations in the past, this experience was unique because of the element of dealing not just with a patient, but also their family member.
“One thing to keep in mind [was] making sure to look into the eyes of the patient and talk to them, rather than looking at the family members,” Dalo said, adding that it can be a challenge not to defer to the family member in the room. “I just tried to put myself in their shoes. If I were them, I would want to feel included in my own health care."
Haley Perlstein, a UMSON student, went into the simulation trying to focus on creating an environment where both the patient and the patient’s family felt they were part of the conversation.
Making sure that everyone in the room feels like they can share thoughts and ask questions allows for a more inclusive space, she said.
And what makes this simulation an especially formative educational experience is the ability to work among multiple disciplines within UMB.
“Bouncing ideas off of each other just creates a more holistic approach for the patient,” Perlstein said. “I think that just improves the quality of care that we can give the patient.”
Interprofessional education is an important, expanding aspect of the SP Program. Bringing together students from the different schools to work in a team model is “vital,” Culpepper said.
“There’s so much to juggle in the health care system,” she said, adding that it can be hard for a patient to try to figure it all out. “When you bring them together in a comprehensive way — what an ideal situation.”