Fabric not Fringe: Weaving Family Involvement throughout Training and Practice for Professionals and Advocates Working with Individuals with Disabilities and Special Health Care Needs

A Whitepaper from AUCD's Family Discipline Workgroup

May 9, 2019


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