Why was the Inclusive Healthcare Partnership Project Started?
Research shows that adults with disabilities have higher rates of many common illnesses.
For example, Vermonters with disabilities are three times more likely than Vermonters without disabilities to have diabetes.
People with disabilities are also less likely to get recommended healthcare screenings for cancer and other serious diseases.
Overall, their health is not a good as it is for people without disabilities.
In 2016, the Vermont Developmental Disabilities Council (VTDDC) partnered with Green Mountain Self-Advocates to learn more about why people with intellectual and developmental disabilities (I/DD) struggle to get the healthcare they need. We named this project the “Inclusive Healthcare Partnership Project,” because it brought together groups like self-advocates and doctors who had not worked together before to improve health.
Over the next year, we talked to many patients with I/DD and professionals who provide healthcare.
We learned from people with I/DD that they face many challenges when seeking healthcare. These include:
Being given information that is hard to understand.
Difficulty talking with healthcare providers during short, rushed appointments.
Finding that nurses and doctors did not listen to what they have to say.
Understanding and completing paperwork before they can see the doctor.
Using the patient portal.
During this project, we also learned that healthcare providers did not feel confident when working with patients with I/DD. They did not have much experience treating adults with I/DD. They did not learn about this group of people in their medical education.
Our research team concluded that communication between people with I/DD and the health providers who worked with them needs to be improved. Better communication is key to better health for people with I/DD.
Our Team
The Inclusive Healthcare Partnership Project is overseen by a talented and diverse group. IHPP’s management team includes a specialist in healthcare communication and a specialist in graphic medicine. Our clinical team includes a family practice doctor, advance practice nurses, and dental hygienists. Our community advisors bring lived experience as leaders in self-advocacy and disability rights.
Kirsten Murphy
IHPP Project Supervisor
Executive Director, Vermont Developmental Disabilities Council
Kirsten Isgro, PhD
IHPP Project Director
Associate Professor in Communication Studies, SUNY Plattsburgh
Instructor in Health Sciences, The University of Vermont
Parent of a teenage daughter with rare neurological disorder
Teppi Zuppo
IHPP Art & Design Director
Freelance Cartoonist and Educator
MFA, The Center for Cartoon Studies
Adjunct Professor in Communications and Creative Media at Champlain College
Karen Topper
IHPP Community Advisory
Administrative Director, Green Mountain Self-Advocates
Kristy Trask, RN
IHPP Clinical Advisory
Care Manager, Primary Care Pediatrics UVMMC
Melissa Houser, MD
IHPP Clinical Advisor
Founder and Executive Director, All Brains Belong VT
Sierra Miller, DNP,
APRN, FNP-C
IHPP Clinical Advisor
Nurse Practitioner, All Brains Belong VT
Jessica Tjong, DNP,
APRN, FNP-C
IHPP Clinical Advisor
Aubrey Moyer
IHPP Intern ‘23-’24
Kele Bourdeau, MA
IHPP Community Advisor
Leadership in Neurodevelopmental Disabilities (LEND), Intern
Jenny Rainville
IHPP Self-Advocate Coordinator
Chair, Families First Peer Group Brattleboro
Pari Motia
IHPP Dental Advisor
Dental Hygienist, Vermont Department of Health
Tiffany
IHPP Dental Advisor
Dental Hygienist
