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
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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
- Kristen Mayleben-Flott, The Munroe-Meyer Institute for Genetics and Rehabilitation LEND and UCEDD, Omaha, NE
- Judy Blake, LoneStar LEND, Houston, TX
Dedicated in Memory of Ruth Roberts
