Building blocks together

The Resource Exchange Research Center

David Ervin’s enthusiasm is contagious. And it doesn’t just arise when he’s talking about the individuals with whom The Resource Exchange works, but it also pops up when TRE’s executive director discusses the Colorado Springs Health Foundation grant that has helped to build out infrastructure for the TRE Research Center.

What began with a “cockamamie notion,” and grew slowly with a 2015 grant from the California-based Special Hope Foundation, Ervin says will now live into perpetuity thanks to CSHF.

“Here’s the super, super cool thing about that … We have done all sorts of research into research centers. There are lots of them that are associated with classic academia. We haven’t found one yet — we’re well into a year of the Health Foundation grant — we haven’t found one that’s based on a community foundation like ours.

“That’s not why we did it,” he adds. “We did it out of this real profound sense of obligation that we have to share this out to the rest of the world. But it’s kind of cool that it’s one of its kind.”

TRE’s jump into research itself began organically, as an offshoot of the Developmental Disabilities Health Center (DDHC), a partnership with several other community organizations.

“We theorized when we launched that piece that it would change health status and we theorized that it would change quality of life of people with intellectual disabilities who, historically, have colossal access barriers to quality healthcare and the result is they experience terrible, terrible health status relative to their neurotypically developed peers,” Ervin says.

DDHC began to capture data and measure effects as a part of one of the partner’s mandates — and quickly realized the information could be of benefit to others as well, especially to those who were thinking about building models to address the barriers that people with disabilities face.

And they realized they could do more. Currently, the TRE Research Center is engaged in a national study called the Longitudinal Health Inventory for People with Developmental Disabilities, and four distinct research projects all focused specifically on the relationship of healthcare and health in people with intellectual and developmental disabilities.

Ervin adds that they’re doing some “pretty cutting-edge work” in pediatrics and early childhood as well, which is important to local moms like Wendy Dickson, whose son Jasper began accessing therapy from TRE before he was diagnosed with Angelman Syndrome, a rare neuro-genetic disorder that primarily affects the nervous system.

“I can’t imagine where Jasper would be without TRE and the therapists,” says Dickson. “When they first saw Jasper, he was not crawling or sitting and had so many other issues. He is now 2 1/2 and is learning new things daily. TRE has amazing therapists that work hand-in-hand with your family to teach you how to help your children. They have been a great resource for getting help with the struggles of raising a child with developmental delays.”

“We think we’re onto some best practice,” says Ervin, “but if best practice falls down in a forest and no one’s there to hear it, does it make any noise? …

“I want people to “ooo” and “ah”— not because we’re particularly impressive, but because this community has been an incubator for something that has no precedent. I want people to recognize that the Colorado Springs Health Foundation could’ve come up with eight million reasons to say no, including, in fact, the fact that there is no precedent,” Ervin says. “And, yet, they didn’t, and the result is that we’re making progress in improving help for humans who are our neighbors, who are our nieces and nephews and co-workers, who have, for generations, experienced the worst form of healthcare bias.”

To learn more about TRE, the Research Center and research currently in progress, visit www.tre.org/services/tre-research-center-2.