LEND Family Discipline Workgroup Meeting at AUCD Meeting

Tuesday, Nov. 11, 2008, 7:30-8:45 a.m.

Present: Fran Goldfarb (Family Faculty - USC, CA), JoEllen Barnhart (MD), Molly Cole (Assoc. Director, LEND/UCEDD, CT), Amy Costanza-Smith (Training Director, OR), Ann Cutler (LEND Director- IL), Roland Ellis (LEND Coordinator – SD), Lori Flood (Family Trainee- WA), Anne B. Harris (LEND Director- WI), Toni Hill (Family Faculty - FL), Kathy Humphries (MT), Louise Iwaishi (LEND Director – HI), Barbara Leach (Family Faculty –NC), Barbara Levitz (Family Faculty - Valhalla, NY), and Jan Moss (Family Faculty - OK), Elaine Ogburn (Family Faculty –VA), Rylin Rogers (Family Trainee- IN), Deb Samson (IA), Mark Smith (Family Faculty –NE),

Dennis Stephens (LEND Director – SD), Stephan Viehweg (Training Director – IN), Kathy Watson (Family Faculty –WA), Rob C. Wild- (LEND grad, OK), Jacalyn T. Yingling (Family Faculty –Rochester, NY)

  1. Welcome & Intros – Fran Goldfarb (CA), Barbara Levitz (Valhalla, NY), and Jan Moss (OK) welcomed everyone, LEND family faculty and other LEND folks as well. This “LEND Family Discipline Workgroup” meeting today represents all family faculty in all LEND programs across the country. Each person present introduced themselves.
  2. History of LEND Family Discipline – Fran explained that in 2004 an informal meeting of LEND family faculty members was held during the AUCD meeting, and MCH identified FAMILY as their discipline of the year for 2005. Following a survey sent to all LEND programs to gather data about family involvement in the various LENDs, AUCD/MCH sponsored a day-long meeting for LEND family faculty in Feb. 2005. Out of this enthusiastic and sizeable gathering emerged two family discipline workgroups. By October 2006 the Family Mentorship workgroup had produced “Promising Practices in Family Mentorship: A Guidebook for MCH-LEND Training Programs,” and the Family Competencies workgroup had produced “Family Discipline Competencies” (both available at under “Publications”). Since then, LEND family faculty have kept in touch through conference calls and meeting at AUCD annually. In 2007 a priority was outreach to all LEND programs to develop a complete roster of all family faculty. In 2008 a subgroup wrote an article for submission to the Journal of Family Social Work for a special edition on family-centered care (no word yet as to whether the article has been accepted, and we hope that no news is good news!)
  1. History of LEND family faculty involvement with MCH Workgroup on Family-Centered Care: Barbara Levitz explained that in addition, some LEND family faculty have been working for the past two years with others in an MCH workgroup on Family-Centered and Family-Directed Care. This workgroup built on the Family Mentorship and Family Competencies products previously developed and have produced four new products. The workgroup members are excited because these products have resulted in requests for technical assistance from throughout the AUCD/LEND and MCH networks. The new products are:
  2. Compendium of Family-Centered and Family-Directed Field Experiences (ftp://ftp.hrsa.gov/mchb/training/documents/grantee_products/08_compendiumfcexperiences03.pdf)
  3. Resources for Teaching Family-Centered and Family-Directed Practices (ftp://ftp.hrsa.gov/mchb/training/documents/grantee_products/m546_fcfdp_resources05.pdf)
  4. Family Advisory Boards Guidelines (ftp://ftp.hrsa.gov/mchb/training/documents/grantee_products/00_guidelinesforestablishing02.pdf)
  5. Indicators of Comprehensive Instruction and Field Placements that Lead to Cultural Competency and Understanding of Family Centered Practice (ftp://ftp.hrsa.gov/mchb/training/documents/grantee_products/fc_indicators_final_oct_2007.pdf)
  1. Looking ahead for the LEND Family Discipline activities:
  2. There will be a conference call for all LEND family faculty on Tuesday, November 18 at 11:00 a.m. Eastern time to follow up on today’s meeting.
  3. Jan Moss (OK): We are looking for ways we can connect to further impact defining and disseminating information about the discipline of Family. She suggested several things for us all to keep in mind:
  4. A database of outcomes of family participation would be very valuable.
  5. MCH has called for a response to some papers on inclusion; Jan has read the papers and sees need for input from family discipline folks. – Information attached.
  6. From time to time, federal or state organizations call upon family faculty to participate in their efforts.
  7. AUCD’s Council on Community Advocacy (COCA) has been in existence for 15 years, but membership is inconsistent and this resource has not been fully utilized.
  8. At her LEND (OK) they have found it very practical to hold “e-meetings,” whereby questions on a topic are sent out at each step of the process, with a 2-week window in which participants can respond at their leisure.
  9. The LEND family discipline group gathered today has had great support from AUCD and MCH; if and when we identify a specific focus, we can open a more formal workgroup on it.
  10. We need to market the valuable information/experience we have within us individually and as a group.
  11. Each of our LEND programs is very different, so we can enrich our programs by connecting with LENDs different from our own.
  12. WE NEED TO THINK OF OURSELVES AS A DISCIPLINE!
  13. Tanya Baker-McCue (NM): Their LEND is participating with VT LEND, which has only 4 trainees and wanted to do a joint discussion board with the NM trainees around family-centered care. It is an inexpensive and exciting collaboration, helped by the fact that the two programs have similar family mentorship components.
  14. Deb Samson - Their state Department of Education has for 7 years funded “Parents as Presenters,” an annual workshop for which 40 parents are selected (by application) and where they learn to tell their own stories and how they wish situations had been handled. The parent names are given to colleges, universities, and veterinary schools as parents available to be presenters. Even the parents who do not end up doing presentations do interact differently with their communities after the training.
  15. Jackie Yingling (Rochester, NY): Used a similar method for their “Presenters with a New Attitude” program; there will be an article on this program in the March 2009 issue of Exceptional Parent magazine.
  16. Discussion: One program added a Wiki, enabling anyone to contribute or modify content on its web pages. A broad goal of MCH seems to be to have a LEND program in every state. Concrete ideas that emerged for this group to consider as ways for us to catalogue and disseminate some of the richness we have to share:
  17. Catalogue the diverse components of each LEND program (each different and at a different stage) and make them available for use by LENDs and other programs seeking to develop new components.
  18. Develop a database of family speakers/resource people available through each LEND program.
  19. Develop a database of self-advocate speakers/resource people available at each LEND.
  20. Update and maintain the LEND family disciplinewebsite – the last meeting minutes posted are from 2 or 3 years ago.
  21. Looking at LEND family trainees as on a career ladder, compile information to use for recruiting new family trainees and supporting graduated family trainees: What skills & expertise do they get out of LEND? What do they do with what they learned? Do they become volunteer advocates in their communities, get a job, or what? How do we grow their employability? How do we look at family leadership training as a workforce development initiative? – just having families get to know each other and do some advocacy is not enough for families. One LEND invited representatives of various family organizations to meet and discuss these questions; another LEND was used as a model by a Philadelphia hospital that now has four family-centered care training positions open (20 hours/week minimum, with benefits!) New England SERVE partnered with and brokered families to tell their stories, and families were paired with organizations and agencies throughout the state; was very successful, and it had career ladder elements for some of the family partners (
  1. More ideas as our meeting time got shorter:
  2. Jan Moss (OK): This group would be ideal for developing a research agenda.
  3. Barbara Levitz: We could develop an easy-to-use survey tool to begin to capture different areas people are working on.
  4. Barbara Leach (NC): We could do more on mentoring/supporting other LENDs. This year she was contacted by University of TN to work with two nursing students on a long-distance “Day in the Life” (family mentorship) experience. With new technologies, trainees could be anywhere and still connect. In some places we still have a problem with really valuing the family expeience; we need to figure out how to articulate the value of family experience and how it’s marketable. Suggests a workgroup on this.
  5. JoEllen (MD): Just figured out why she is at this meeting! Is a parent, has many years’ higher education administration experience, media experience, & has a Ph.D. in disability experience.
  6. When a person with a disability speaks, it rocks the world – even more than when parents speak. And sibling speakers have very different perspective from parents & persons with disabilities.
  7. Fran Goldfarb (CA): Grant from the NationalFamilySupportAssistanceCenter recently was awarded to Academy for Educational Development although a lot of LENDs applied for it. LEND family faculty have so much academic knowledge around family support – how do we market our workgroup inside and beyond AUCD as family support professionals who have been doing this work in universities and hospitals?
  8. : We need to make our LEND programs resources-to-go-to in our communities. A hospital built a NICU a few years ago with input from many groups, including families, as to architecture; the rooms are wonderfully family-centered, but now they need family-centered practices to implement in their care-giving. We need to make our services available, and we need to learn how to make our services billable.
  9. Fran Goldfarb (CA): We can ask every LEND to send materials that have been useful for their family support programs and ask the AUCD to post them on the Family page of LEND webpages.
  1. Misc: Family faculty were asked to sign a baby card for Crystal Pariseau, who has been so indispensable to this group since its inception and who gave birth to Evan Michael on Oct. 30.
  1. Next step: There will be a conference call for all LEND family faculty on Tuesday, November 18 at 11:00 a.m. Eastern time to follow up on today’s meeting. Call number and sign-in will be emailed to everyone at the meeting and everyone on the LEND family discipline listserve.

Submitted by Elaine Ogburn (VA) with apologies for any inaccuracies!