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U.Va. and MBU program aims to improve health care of patients with disabilities

The joint initiative trains future health professionals on treating children with developmental disabilities in the Blue Ridge region

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Both the University and the greater Charlottesville area saw an addition to its health care system in August — Education Prof. Micah Mazurek and Dr. Beth Ellen Davis began to co-direct one of the newest Leadership Education in Neurodevelopment and Related Disabilities programs in the country in collaboration with Mary Baldwin University.

Mazurek has high hopes for the collaboration with Mary Baldwin University’s Murphy Deming College of Health and Sciences. Both Mazurek and Davis trained as LEND fellows prior to their time at the University.

“We don't have physical therapy and occupational therapy programs here, and those are two really important disciplines when you think about children with disabilities and the therapies that they need access to,” Mazurek said. “So we were really fortunate that Mary Baldwin University has both of those training programs.”

Davis, a developmental and behavioral pediatrician and professor in the School of Medicine, previously served as the director of the LEND program in Seattle and hopes the new LEND program to address the underrepresented healthcare needs of children and families in the Blue Ridge region.

“Along with many of the training programs that we have … we have other partners up and down the Blue Ridge Mountains, from James Madison University, Virginia Tech, U.Va. Wise [and] Appalachian State University,” Davis said. “We are focusing on how to better serve

individuals and families in rural areas, and so we thought it fitting that the title be Blue Ridge LEND.” 

The LEND programs began in 1950, with locations expanding across the country to support the growth of leaders in health care. The Blue Ridge LEND Program is one of 60 federally-funded interdisciplinary programs of its kind under the Autism Collaboration, Accountability, Research, Education and Support Act. Mazurek and Davis received a $2.2 million grant from the Health Resources and Services Administration of the U.S. Department of Health and Human Services and will use the money to advance the systems of care for individuals with disabilities.

In August, the LEND program welcomed its inaugural cohort of fellows — graduate students and those pursuing masters, doctoral and postdoctoral degrees from any school who are accepted as trainees on an application basis. Fellows from a diverse number of fields — such as medicine, special education, speech language pathology and self-advocates — work in health care clinics that provide comprehensive assessment and treatment proposals to rule out or diagnose individuals on the autism spectrum or those with other developmental disorders. They also gain hands-on experience interacting with young patients and their families in cultivating a well-educated and comprehensive support system around the patient that meets their unique needs. 

“We're having our trainees come in, observe, participate, learn the strategies or techniques associated with those evaluations,” Davis said. “Some of them learn much more in depth and for many more hours than others, but everybody has a minimum of 50 to 100 hours of clinical contact with children and their families with disabilities as part of this program.”

Anyone interested in the LEND program can become more involved through its virtual Lunch & Learn lecture series. Each Friday, community members and individuals interested in learning about disabilities can join meetings to discuss and learn about the topic for that week. Topics are evidence-based and relevant to current topics in the health care disciplines pertaining to disabilities. 

The Lunch & Learn events promote the interdisciplinary nature Mazurek and Davis hope to establish within LEND. Practicing professionals — from dentists to teachers — can learn how to better serve children with developmental disabilities in their professions. 

“Decades ago ... we didn't know that there were certain genetic diseases that cause or look like other things,” Davis said. “So many people out in practice even — not just the students who are learning it for the first time, but many practicing professionals are unaware of the field of developmental disabilities in autism. And so [the program is] an opportunity to provide up-to-date, evidence-based training.”

Next year, the program plans to introduce a self-advocate role for individuals with significant disabilities to be a source of input for improving their care. Davis hopes for it to be integrated into their leadership training program.

“[The role] models the importance of representation … and it also allows room for us to prioritize the quality of family-centered care,” Davis said.