Self-advocate Heidi Myhre pictured in 2014 greeting the Americans with Disabilities Act Road to Freedom bus tour in St. Paul, Minnesota.

Heidi Myhre pictured in 2014 greeting the Americans with Disabilities Act Road to Freedom bus tour in St. Paul, Minnesota.

Meeting with a group of health professionals recently, self-advocate Heidi Myhre (pictured in 2014 greeting the Americans with Disabilities Act Road to Freedom bus tour in St. Paul, Minnesota) shared her frustrations about dealing with doctors and nurses. Some are creative and work hard to understand her health concerns in context with her multiple disabilities, but many have discounted those disabilities entirely and focus only on the concern she presents in the office on a given day.

To her, the experience is like being cut into pieces of sushi, she told the health professionals. Little wonder, perhaps, that research shows people with intellectual and developmental disabilities have poorer mental and overall health than those without IDD.

“The system wants to separate you, but I come as a whole,” said Myhre, a longtime disability rights activist from Minnesota, who lives with learning, hearing, and other disabilities. “When I come in the room, I come with all my disabilities.”

Under a new five-year, $1.75 million grant from the U.S. Department of Health and Human Services Administration on Community Living, a diverse consortium will create curricula and training for health professionals working with people with IDD, like Myhre. 

Led by Rush University and including University of Minnesota’s Institute on Community Integration, the consortium, Partnering to Transform Health Outcomes with Persons with Intellectual Disabilities and Developmental Disabilities will use a framework known as the Collective Impact Model to develop the training in a structured, collaborative process among diverse stakeholders, with the goal of expanding the training to 15,000 students across more than 30 medical, nursing, occupational therapy, and other professional education programs.

ICI will help develop the training curriculum and evaluate outcomes of its implementation. Other core partners are the Golisano Institute for Developmental Disability Nursing at St. John Fisher College, University of Illinois at Chicago, and Villanova University’s M. Louise Fitzpatrick College of Nursing. In addition to their own health educators, the partners will involve Myhre and other self-advocates, community organizations, accreditation experts, and others to develop the training.

“This project allows us to bridge the gap between applied IDD research and medical professionals in clinical settings,” said Renáta Tichá,  co-director of ICI’s Research and Training Center on HCBS Outcome Measurement (RTC-OM). 

The lack of content addressing people with IDD in professional health education leads to experiences like that of Myhre’s, with individuals treated as presenting problems rather than with a holistic approach, said Brian Abery,  co-director of RTC-OM.

“Involving self-advocates in every facet of this work will help clinicians build better relationships with their patients with IDD,” said Abery. “Whether it’s a pharmacist giving medication instructions, or a nurse or doctor explaining treatment options, improving that relationship and communication will increase the likelihood of patients and health professionals understanding each other, which will lead to more successful treatment plans.”

Sarah Ailey, the principal investigator on the project, a professor in the Rush College of Nursing and the current President of the Alliance for Disability in Health Care Education, said the consortium will create professional education that improves results for people with IDD across a broad health spectrum. 

“Increasingly, health care is pushing beyond its traditional silos,” she said.

For Myhre, progress can’t come soon enough. She said she has learned through experience how to keep asking questions until she is comfortable with her own treatment plans, but she worries about the fragmented care many people with disabilities who can’t effectively advocate for themselves still receive.

“I’m lucky to have the ability to advocate for myself and I don’t let anyone walk all over me, but we need to stand up for others,” she said. “I will bring what I know to the table to help us be creative and think about all the angles. There’s so much more they can do.”