It’s tough enough for any family of a child with special needs to navigate the reams of paperwork required for services or understand the medical jargon related to the child’s disability. For people who speak little English, come from a different racial or ethnic background, or live on lower-than-average income, those challenges are magnified multiple times.
That’s the kind of inequity in the healthcare system that all service providers must recognize and address, says Maria Mercedes Avila, Ph.D., assistant professor of pediatrics at the Larner College of Medicine at the University of Vermont. She recently took over as program director of the Vermont Leadership Education in Neurodevelopmental Disabilities (VT LEND) program, which trains professionals in health and education to serve children with neurodevelopmental disorders such as autism.
“It makes us more responsive to everybody” to recognize and understand cultural differences and “makes us a better provider, and a better human being,” says Avila, who was recently notified that she will be receiving the Association of University Centers on Disabilities’ (AUCD) 2016 Multicultural Council Leadership in Diversity Award at the organization’s annual conference in December.
VT LEND recently received $2.65 million from the federal Health Resources & Services Administration to continue its work in this area for five more years. The HRSA’s Maternal and Child Health Bureau is the sole source of financial support for VT LEND, which has been part of UVM’s Department of Pediatrics since 1995, and requires renewal of funding every five years.
“This competitive renewal was very important, because the program has changed from what it had been,” Avila says.
A big part of that change is the demographic makeup of VT LEND’s leaders, educators and trainees under Avila’s ongoing effort to incorporate cultural competency. When she started at VT LEND as a program evaluator in 2009, she noticed the program’s lack of diversity. Not only was all of its staff and faculty from white, middle-class backgrounds, but so were most of the families that worked with VT LEND’s professionals, she says.
In 2011, VT LEND launched a diversity recruitment plan. About 40 percent of the program’s faculty and staff today are from different racial, ethnic and socioeconomic populations. Of the program’s 2015 trainees, more than 50 percent are racially and ethnically diverse.
VT LEND has 12 trainees and fellows, including five “family fellows” with children with disabilities, who undergo a year of graduate-level interdisciplinary education and training. As of this fall, two trainees each year come from the United States Virgin Islands under a partnership with the University Centers for Excellence in Developmental Disabilities in that territory.
VT LEND has two advisory councils. One involves leaders of state agencies and organizations involved with families of children with special needs. The second is the Health Disparities and Cultural Competency Advisory Council, which includes 15 to 20 community members, 95 percent of them representing racially and ethnically diverse groups.
Avila emphasized the importance of recognizing and including the lesbian, gay, bisexual and transgender community, youth and elder populations, those living in rural areas and refugees – particularly in Vermont, where many people shrug off the lack of diversity by pointing to the state’s predominantly white composition.
“Unless you are immersed in diverse communities, it’s very hard to see” what the needs are, Avila says. “You have to open not just your mind. You also have to open your eyes and your heart.”
Avila took the helm of VT LEND upon the retirement of co-director Jean Beatson, UVM clinical professor of nursing. She also recently joined the UVM President’s Commission on Inclusive Excellence.
“I would like to see what we’ve done in diversity and inclusion in this program to be replicated across campus,” she says of VT LEND.
“The Vermont LEND has been a national leader in recruiting diverse trainees and faculty,” says Andrew Imparato, AUCD executive director. “We are delighted to see this dynamic, innovative program selected for an additional five years of funding and to see Mercedes Avila selected to lead it. The AUCD network is lucky to have Mercedes’ leadership as co-chair of our Multicultural Counciland we look forward to watching her national impact grow in the coming years.”
The VT LEND leadership team also includes Mary Alice Favro, M.A., CCC-SLP, UVM associate professor of communication sciences and disorders and VT LEND clinical and training director; Naw-Esther Doh, program coordinator; and Virginie Diambou, community health and refugee outreach coordinator.
Learn more about VT LEND.