A new set of health guides, designed by and for Vermonters with developmental and intellectual disabilities, is now available.
They cover topics ranging from vaccines and long COVID, to breast and pelvic exams, to advanced directives and patient rights.
The guides are intended to create better communication between people with disabilities and their health care providers.
That’s because communication challenges can be a barrier to health care for Vermonters with disabilities. Providers might share information that’s hard to understand, and patients with disabilities might have difficulty talking during rushed appointments.
These issues were identified through collaborative research from the Vermont Developmental Disabilities Council and local disability rights group Green Mountain Self-Advocates. They wanted to study the reasons behind health disparities for Vermonters with disabilities, including higher rates of chronic illnesses and lower rates of cancer screenings than Vermonters without disabilities.
That research led to the formation of the Inclusive Healthcare Partnership Project, which made the new health guides over the last three years.
The guides use plain language, with short, jargon-free sentences. They come in both poster and video form, with illustrations by cartoonist Teppi Zuppo and narration from Dummerston resident Jenny Rainville.
“I want people to understand that health is super, super important, and that it's OK for people to — if they need a guide — to look at a guide,” Rainville said.
She is also the self-advocate coordinator for the Inclusive Healthcare Partnership Project, which means she speaks up for the needs of her peers with developmental disabilities.
And for the health guides, Rainville helped coordinate focus groups to gather feedback.
“I liked the fact that I got to be a voice for people with disabilities,” she said.
In the health guide about dental care, for example, Rainville suggested there be a spot for people to write down their questions and notes for their next visit. And that was based on her own experience of some "extensive dental appointments."
"Had we done these, like, years and years ago, it probably would have made things a little bit easier for me," Rainville said.
Kirsten Isgro, the project director for the Inclusive Healthcare Partnership Project, said the main goal of the health guides is to simplify medical terminology.
“Jenny [Rainville] and I did some role plays for some clinicians, and we were pretending that Jenny had pink eye,” Isgro said. “Demonstrating how you could explain conjunctivitis in really, really complicated ways, or you could call it pink eye, and it's a virus, and there's drops that you can use.”
The illustrations also aim to be as transparent as possible. Isgro said the guide about breast exams initially had a drawing with the person’s breasts hidden underneath covers. But that didn’t go over well with a focus group.
“And they were like, ‘No, we want to actually see the doctor doing the exam,’” Isgro said. “And so Teppi [Zuppo] went back and redrew a couple of the cartoons, so that we could illustrate more accurately what actually happens in an exam room.”
Isgro and Rainville say there are more topics they’d like to make health guides on, things like mental health and sexuality.
But the project's $200,000 in grant funding is used up. Most of those dollars came from the Vermont Department of Health, via a pool of funds from the Centers for Disease Control and Prevention. The federal government recently clawed back the remainder of those funds, though the health guides project had already spent the money.
For now, the Inclusive Healthcare Partnership Project is working on getting the guides more widely distributed.
