By Sabrina Novenschi and Kate Martin, MD, University of Nevada, Las Vegas

Introduction and Background

People with disabilities, particularly those with severe intellectual disabilities (ID), encounter significant barriers to receiving quality health care, resulting in worse health outcomes than their nondisabled counterparts.¹ Located in Southern Nevada, Opportunity Village is a unique resource for individuals with ID. It is the largest nonprofit, community-based, vocational rehabilitation program of its kind in the state. The objectives of the educational work presented here were twofold: (1) incorporate medical students into the development of a health promotion program for people with ID; and (2) learn more about the quality of life of people with ID and their family members.

Methods

After University of Nevada, Reno (UNR) School of Medicine met with Opportunity Village leadership, it was determined to perform a needs assessment that would identify the focuses of their new, joint health promotion program.

Four medical students were recruited to assist with this effort through UNR School of Medicine’s new Scholarly Concentration in Service Learning (SCISL), a longitudinal program spanning all 4 years of the medical curriculum.²

Faculty and students developed the needs assessment and included the Family Quality of Life Survey (FQOLS-2006) to be administered to the primary caregivers of 54 families of individuals served by Opportunity Village, either in-person or at home. Before administering the surveys, to gain a better understanding of the challenges faced by people with ID, the students observed the individuals in their programs over the course of a typical day at Opportunity Village. The University of Nevada, Reno Institutional Review Board (IRB) determined that this study was exempt.

Results

The needs assessment completed by the medical students allowed for confirmation of previous literature citing barriers to health care utilization reported by individuals with ID and their families. This was a rewarding validation for the students, and also set a foundation for the new health promotions program. Following are samples of medical students’ reflections on the 4-week experience at Opportunity Village:

“Interacting with parents of patients with disabilities was a very rewarding experience. Becoming aware of their inability to easily access certain services highlighted the healthcare void that many deal with daily. Having the opportunity to discuss pitfalls in these patients' care allowed me to better appreciate the need for programs that deal with patients who have special needs or are disabled, and to develop a plan to facilitate the necessary changes to close this health care gap.”

“Sitting across from caregivers as they explained to me how their loved ones face health care and community disparities made me realize how closely this affects all members of the family. Mothers and fathers expressed their frustration in not knowing how to access common resources and explained that options that are offered are often limited in variability. In addition, family members commonly found it difficult to enjoy the same activities as their loved ones. Realizing how immensely this impacts an entire family allowed me to understand what a family faces as a whole.”  

Lessons Learned

Medical students obtaining the information for a needs assessment firsthand provided them with experiential learning not available within a traditional classroom or clinical setting. It also offered them hands-on exposure to public health. Development of the health promotion program resulted in directed activities and services for the individuals with ID and their families, including the initiation of a special needs dental clinic in the community, which is currently a required rotation within the UNLV School of Dental Medicine curriculum. Future projects relating to this work include performing a needs assessment on the application of virtual reality for people with autism and human-centered design proposals for assistive technology to address the significant and poorly-addressed communication obstacles experienced by individuals with severe ID. Other institutions can use this model for developing impactful innovative learning opportunities such as this one.

References

1. Slater H, Baxter H, Kerr M. Barriers to Health Care Services and the Role of the Physician. In: Prasher V., Janicki M. (eds) Physical Health of Adults with Intellectual and Developmental Disabilities. Cham, Switzerland: Springer; 2019. https://doi.org/10.1007/978-3-319-90083-4_19
2. Scholarly Concentration in Service Learning (SCISL). University of Nevada, Reno School of Medicine. https://med.unr.edu/office-of-medical-research/scholarly-concentration/scholarly-concentration-in-service-learning-(scisl). Published January 20, 2020. Accessed October 30, 2020.