Interdisciplinary Genetics Competencies for LEND Trainees

As recommended by the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Genetics Workgroup

October 3, 2017

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The purpose of the LEND training program is to improve the health of infants, children, and adolescents with neurodevelopmental disabilities, including autism spectrum disorder. There are 52 LEND programs located in 44 US states, each with its own focus and expertise. They all share the following objectives:

  1. Advance the knowledge and skills of all child health professionals to improve health care delivery systems for children with neurodevelopmental disabilities. 
  2. Provide high-quality interdisciplinary education that emphasizes the integration of services from state and local agencies and organizations, private providers, and communities. 
  3. Provide health professionals with skills that foster community-based partnerships. 
  4. Promote innovative practices to enhance cultural competency, family-centered care, and interdisciplinary partnerships.  

Neurodevelopmental Disorders is a large umbrella encompassing acquired, genetic, and multifactorial causes for disability. These genetics competencies were created out of an expressed need for LEND trainees to receive additional training regarding the role that genetics may play in the lives of individuals with neurodevelopmental and related disorders. The purpose of this document is to serve as resource for LEND programs for those programs desiring to strengthen their genetics content. It is not intended to serve as a mandate or requirement, but rather to provide specific guidance in achieving basic and advanced competencies in genetics. It is the opinion of the LEND Genetics workgroup that all LEND alumni should:

  • Examine their own competence of practice, knowledge of evidence-based guidelines, and awareness of professional resources on a regular basis, identifying areas of strength and areas where professional development related to genetics and genomics would be beneficial. 
  • Understand that health-related genetic information can have important social and psychological implications for individuals and families. 
  • Know when and how to make a referral to a genetics professional

Editors

  • Tyler Reimschisel, MD, MHPE: Vanderbilt Consortium LEND, Nashville, TN 
  • Sara Gilvary, MS: Sarah Lawrence College, Bronxville, NY 
  • Sarah DeMaio, MSW: Association of University Centers on Disabilities, Silver Spring, MD
  •  Richard Ferrante, PhD: University of South Carolina Center for Disability Resources, Columbia, SC; Chair of the LEND Genetics Workgroup

Contributers

LEND Genetics Workgroup Members:

  • Joann Bodurtha, MD, MPH: Johns Hopkins University School of Medicine  
  • Karla Brewer, MEd: Maternal and Child Health Bureau 
  • Jessica Davis, MS, CGC: McGovern Medical School at The University of Texas Health Science Center 
  • Anne Bradford Harris, PhD, MPH, RD: Waisman Center, UCEDD/LEND  
  • Judith Holt, PhD: Utah Regional LEND 
  • Louise Iwaishi, MD: Hawaii LEND  
  • Rita Maldonado, MPH: Maternal and Child Health Bureau
  • Eileen McGrath, PhD: The University of Arizona LEND  
  • John B. Moeschler, MD: New Hampshire LEND Program
  • Janice Palumbos, MS: Utah Regional LEND 
  • Jill Shuger, ScM: Maternal and Child Health Bureau 
  • Robyn Schulhof, MA: Maternal and Child Health Bureau 
  • Patrice Yasuda, PHD: CA-LEND 
  • Questions about this or other LEND Genetics Workgroup projects and products can be directed to Sarah DeMaio at sdemaio@aucd.org.

    Publication

    Association of University Centers on Disabilities
    1100 Wayne Avenue, Suite 1000
    Silver Spring, MD 20910
    www.aucd.org
    aucdinfo@aucd.org

    This publication was produced by the Association of University Centers on Disabilities through cooperative agreement #UA5MC11068 with the Maternal and Child Health Bureau. The contents of this document do not necessarily reflect the views or policies of the Maternal and Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services, or the U.S. Government.