By RICK WEBER
As director of the Golisano Intellectual and Developmental Disability Initiative (GIDDI), Ellen Kroog Donald, PT PhD, has been on a passionate mission to work alongside Florida Gulf Coast University faculty and staff to increase awareness and education related to the unique qualities and needs of individuals with Intellectual and Developmental Disabilities (IDD) of all ages.
Over the years, she has led the charge to create opportunities for students to learn through additions to their curriculum, informal conversations, employment and volunteerism.
And now she is taking it to the next level.
Donald, Assistant Professor of Physical Therapy in FGCU’s Marieb College of Health & Human Services, has worked with Joseph Buhain, Director of Interprofessional Simulation and Emerging Technology for Marieb College, to develop a project called “Lived Experience.”
The underlying philosophy: Capture individuals’ life experiences in their own words.
“Often, children and adults with IDD do not get to tell their own story,” Donald says. “Well-meaning parents, teachers, health professionals and other caregivers often tell the story. This project allows people to express themselves using their unique communication style and state their answers to questions in a way that is meaningful to them.
“I believe this project is innovative and demonstrates the philosophy that we have at GIDDI where each individual is valued for their unique strengths and experiences.”
Donald and Buhain, along with colleagues from seven other health disciplines, developed a series of questions related to a person’s experience with family, friendships, healthcare, school, interests, employment (or future employment) and life goals/dreams. These questions form the framework for the interviews that they will conduct with individuals from the community. If individuals are unable to speak for themselves, family members will speak from their perspective.
Donald and Buhain are in the process of identifying individuals in the community and conducting pre-interviews to see if they will be comfortable in front of a camera. They will interview a wide variety of individuals based on life stage, gender, diagnoses, level of independence, preferred communication style, cultural background, etc.
Those participants are invited to campus for a 90-minute time block and interviewed in a specialized studio set up to capture unique images using Dr. Hologram technology, which provides holographic projections to create immersive and interactive learning experiences. Innovative technology creates a three-dimensional image of the person, making a standard video come alive.
These recordings will then be used in the classroom, where interprofessional discussion groups will listen, make observations and bring in different perspectives to a discussion related to these individuals’ “lived experience.”
With further development, these will become more interactive and allow for opportunities for simulations of the interactions that students will have in practice.
“By creating these recordings, more students can have access to hearing from a variety of individuals without time and place restrictions,” Donald says. “They can take the learning that they have had through their individual course materials and apply it within these interprofessional discussions.
“The follow-up to these interprofessional discussions will be to have immersive experiences in the community to provide the opportunity to interact with individuals with IDD in their natural environments such as recreational activities, supportive employment programs and social groups.”
Donald says this project will help satisfy the strong need for an increased focus on this population, for interprofessional learning and to promote the importance of hearing the needs of individuals directly from the person and the family/caregiver.
“It is a push to increase the focus on training our future workforce on meeting the needs of those with IDD and learning in the context of an interprofessional experience—not just learning with others who have come from the same training, but learning across professions,” she says. “The focus is on the person, not a diagnosis or disability, and hearing the perspective of the person with IDD in their own words. It goes beyond hearing something in a lecture or reading it in a textbook, but demonstrating value in observing and listening to the real experiences of people.
“We welcome interest from the community for participating in one of these interviews. We believe that there are many members of the community who are living with an intellectual or developmental disability themselves, or in their family, who have so much to offer to others. We would love to expand this project and will be looking for other opportunities for funding future growth.”
GIDDI was established in FGCU’s Marieb College of Health & Human Services through funding by the Golisano Foundation. The foundation’s other philanthropy in the region includes Golisano Children’s Hospital of Southwest Florida and Golisano Children’s Museum of Naples.
Intellectual and developmental disabilities are usually present at birth or early in life and can affect an individual’s physical, intellectual and/or emotional development. Many of these conditions affect multiple body systems, such as the nervous system, skeletal system, the senses and metabolism.
Developmental disabilities include diagnoses that result in impairments in physical, learning, language or behavior areas, according to the Centers for Disease Control and Prevention. Recent estimates show that 1 in 6, or about 17%, of American children 3 to 17 years old have one or more developmental disabilities, such as autism, genetic disorders or attention-deficit/hyperactivity disorder. The CDC reports the incidence of children with IDD rose from 7.4% to 8.5% in recent years.
In Southwest Florida, it is estimated that 24,000 to 27,000 individuals live with IDD, based on 2023 census data, according to Donald. The need is most likely greater than these numbers reflect, reinforcing the importance of effective training for our future workforce.
FGCU’s Marieb College of Health & Human Services
10501 FGCU Boulevard South
Fort Myers, FL 33965
(239) 590-1000 | fgcu.edu