A Whitepaper from AUCD's Family Discipline Workgroup

May 9, 2019

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pdf File 2019 family fabric.pdf (2,690KB) [download]

This white paper approaches family involvement from the perspective of the family discipline itself, and the ongoing paradigm shift in family-centered care--from fringe to fabric. This document includes a summary of the history of family involvement in the LEND network and a series of 8 individual handouts which detail the definition, need, benefits, resources and strategies associated with each type of family involvement.

  • Family Members Serving as Faculty or Staff
  • Family Members as Supports in Clinical Settings
  • Families as Mentors
  • Families as Presenters and / or Panelists
  • Family Members from the Community Serving on Advisory Boards, as Research Participants, or Consultants on Thesis Preparation
  • Family-Focused Topics
  • Families as Trainees
  • Family Members Participating in Program Planning, Implementation, and Evaluation

Developed by members of the AUCD LEND Family Discipline Network:

  • Fran Goldfarb, CA-LEND, USC UCEDD/LEND Children's Hospital Los Angeles, Los Angeles, CA
  • Barbara Levitz, Westchester Institute for Human Development, LEND/UCEDD Valhalla, NY
  • Julieta Hernandez, University of Miami, Miller School of Medicine, Mailman Center for Child Development, Miami, FL
  • Sarah DeMaio, Association of University Centers for Disabilities
  • Mark A. Smith, Munroe-Meyer Institute for Genetics and Rehabilitation LEND/UCEDD, Omaha, Nebraska
  • Dori Ortman, LEND Center of Pittsburgh, UPMC Children's Hospital of Pittsburgh, Pittsburgh, PA
  • Wanda Felty, Center for Learning and Leadership/UCEDD & OKLEND, Oklahoma City, OK
  • Sheryl Feuer, LEND Program at Cincinnati Children's Hospital and the University of Cincinnati, Cincinnati OH
  • Linda Russo, The LEND and UCEDD Programs at the University of Alabama at Birmingham, Birmingham, AL

With support from


Dedicated in Memory of Ruth Roberts

 

ITAC

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This website is provided in partial fulfillment of tasks outlined in a cooperative agreement (#2 UA5MC11068-15-00) between AUCD and the Maternal and Child Health Bureau (MCHB). The contents of this website do not necessarily reflect the views or policies of MCHB, the Health Resources Services Administration (HRSA), U.S. Department of Health and Human Services, or the U.S. Government.