LISA: Can you tell us about PATH-PWIDD?
First, I should state that I am both a Nurse Educator and what we call the Principal Investigator of the PArtnering to Transform Health Outcomes with Persons With Intellectual and Developmental Disabilities (PATH-PWIDD) program, and the mother of a middle-aged son with intellectual and developmental disabilities.
PATH-PWIDD, also known as IDDHealthEquity, is a program to educate and train healthcare professionals in the health and healthcare of persons with IDD. It is funded through a five-year grant from the Administration for Community Living. A consortium of five partner institutions (Rush University, Villanova University, the Golisano Institute for Developmental Disability Nursing at St. John Fisher University, the University of Minnesota Center for Community Integration, and The University of Illinois at Chicago) committed to developing a suite of education and practice experiences to be integrated into interprofessional education programs at our institutions, with plans to spread to at least 30 others over the course of the five-year grant.
L- What is important for us to know?
S- The highest risk factor for contracting COVID-19 (in the time before vaccinations) was the presence of IDD (intellectual and developmental disability) and presence of IDD was the highest risk factor, other than age, of dying. This is according to a report on a study authored by Jonathan Gleason MD and published in the New England Journal of Medicine journal Catalyst. Further, the discrimination and ableism faced by persons with IDD heightened and became starker in the midst of the crisis. People hospitalized were, with some exceptions, denied the right to a support person while hospitalized. I say with some exceptions. My own institution made it clear that individuals who needed support persons during hospitalization had the right to have one. And on June 9, 2020, the US Office of Civil Rights made it clear that people with disabilities have the right to have a support person with them when hospitalized, not to say that the practice of denials did not continue.
L- What are some of your pilot programs?
S- At Rush University, we have an Advanced Interprofessional Service-Learning (AISLE) Program in partnership with a community-based service agency providing residential services to persons with IDD in the south and west sides of Chicago. Community Health Mentors who are persons with IDD receiving services and their staff supports partnered with interprofessional teams of two to three students from a minimum of two disciplines to develop a wellness goal with action plan over the course of three semi-structured telehealth interviews. We are finishing our third trimester with this program.
Nursing students from Villanova University, in collaboration with students majoring in health professions at St. Joseph’s University in Philadelphia (including students in occupational and physical therapy, physician assistant, pharmacy, and pre-medicine programs) partnered with persons with IDD and their caregivers in a real-time or virtual simulation experience in Spring ‘23. For Villanova students, the experience was part of a senior-level course, Practicum in Health Promotion & Home Health in the Community. Before participating in the IPE experience, students completed assignments and experiences designed to increase their knowledge and skill in interacting with persons with IDD.
The Golisano Institute for Developmental Disability Nursing at St. John Fisher University in Rochester, New York created, in partnership with Special Olympics International, an online Interprofessional Competency-Based IDD Core Curriculum (ICC-IDD). This was piloted in Spring, '23 with partners at the University of Minnesota. More than 400 health professional students participated. The pilot was well-received. Materials are being updated and will be available soon.
At The University of Illinois at Chicago an interactive primary care simulation experience program was developed in which pharmacy, nursing, and dentistry students partnered with persons with IDD serving as standardized patients. Persons with IDD were recruited to be trained as standardized patients from a training program through the Department on Disability and Human Development at UIC that supports youth with IDD in achieving employment in the community. They completed three workshops with extensive training by a Medical Simulation Specialist and Acting Technique Teacher and Coach to develop clinical and communication skills to portray a variety of patient scenarios. All simulated encounters incorporated an opportunity to debrief and process any previous trauma triggered by the interprofessional simulation experience. The scenarios and training materials are being refined based on the pilot experience and are expected to be available for dissemination soon.
L- What do you enjoy the most about your work with PATH-PWIDD?
S- We have an active group of self and family advocates advising us on our work. I enjoy working with them. For our Rush service-learning opportunity, I enjoy working with the community-based agency and their staff on how this happens. And the program has helped me make connections with people across the country and internationally who are trying to improve how the healthcare system treats people like my son.