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An innovative program at UC Davis MIND Institute is teaching clinicians and graduate students how to better serve families coping with autism and other neurodevelopmental disorders by working side-by-side with them on research and other projects.
The LEND program (the acronym stands for Leadership Education in Neurodevelopmental and Related Disabilities) is aimed at “increasing knowledge for professionals around family-centered and culturally sensitive care,” explains Dr. Janice Enriquez, the program’s training director. Program fellows participate in seminars, diagnostic evaluations and leadership training together, learning from one another along the way.
“The importance of including the family members or the individual with the developmental disability is that their knowledge is irreplaceable,” says Enriquez. “There’s no degree you can acquire” that compares to the firsthand experience of living with a disability or caring for someone who does.
Monica Baumbach, a LEND program fellow whose 4-year-old son has autism, is a self-described “information junkie” who says she joined the interdisciplinary program because she “wanted to learn as much as I could about autism, not just the disorder but the therapy and treatment and community behind it.” Along the way, Baumbach has enjoyed “helping the clinicians of the future see autism from a family perspective.”
Baumbach believes the most important aspect of her participation in LEND is to “bring a face and a human aspect to the work of the clinicians,” she says. “It helps for them to be able to think outside of the clinical realm. I want to help them understand what therapy looks like from my point of view.”
There are 52 federally funded LEND programs across the country, but the one operated by the MIND Institute is the only one in Northern California. Program leaders hope that the local presence will help build support for families navigating complicated systems of care.
“Success will mean that we’ve cultivated a larger number of leaders in the community who can provide best-practice services for people with developmental disabilities here in Northern California,” says Enriquez. “We also want to be able to identify children who are at risk for autism and developmental disabilities earlier and be able to support parents as they advocate for their children.”
After completing the program, Baumbach hopes to volunteer at the MIND Institute to be a resource to families experiencing some of the same things she and her wife experienced when their son was first diagnosed.
“I remember how overwhelming it was and how frantic you are because you want to help them right away,” she says. “My goal is to help those families access systems of care. As a parent, you’re writing the treatment plan; you’re the voice of the child. There is so much more that can be done beyond just giving families a diagnosis and sending them on their way.”