Southeastern Conference Call Notes

Southeastern Conference Call Notes

Re: Parent Conference Call Collaborations

Guest Speaker: Clara Berg, NYDBC & NFADB

12/11/2013  1:30 PM CST – 2:30 CST

In attendance:

Purpose of call: to hear about Clara’s experiences, structure of the parent conference calls she’s been involved with so that our team can determine what our next moves are to get similar calls started for our families.

Clara Berg:

Historical Sense: About 10 years ago, the calls started in NY because they wanted to get families who spoke Spanish together. (Many of the families did not have access to internet or technology.)

 They ended up dividing the calls into groups, i.e. by ages, like birth to six years old; those with children born prematurely with medical issues and another one for CHARGE (all in Spanish).

 During 2005 – 2010, NY had 3 groups with 6 – 10 families in each in Spanish. The CHARGE group requested to allow families from other states (with whom they had been connecter on FaceBook or listserv) to participate in the calls.

 Since the NYPN did not have the financial resources to organize the call, Clara asked NCDB for support of the phone line, and the monthly “National Calls” started in 2009 for the Usher and CHARGE’s parents. We have participants from California, Texas, Minnesota, New Jersey, Florida, Puerto Rico, Oregon and New York. Since NCDB gave us the support until the end of the 2013 grant period, we requested permission to run the calls until December 2013. These calls are ending at the end of the month.

 For the new DB grant period, the states of California, Florida, Texas and New York have an agreement written into the grant to pursue the phone calls in Spanish for the CHARGE and Usher groups for the families living in those states.

Structure of Monthly Calls:

 She sent a flyer to the Projects including the Family Specialists to let them know about the calls and so they could inform the families.

 Plan for an hour but if it’s the CHARGE group, be prepared for 1.5 – 2 hours of time per call.

 Best to have no more than 8 – 10 families on any one call so that everyone gets an opportunity to talk and folks aren’t talking over each other, and so the time spent on the call is reasonable for everyone.

 Occasionally, she has had to put a structure onto the time spent into the call if everyone was over zealous in the beginning. Once she had to speak with an angry, dominating family member outside of the call to ask that they change their behavior or not come back into the call. If it’s a quiet group, she helps start the conversation, i.e. “How were you children during the holiday break?”

 About every two months, in order to be effective, you must bring in topics of interest to families depending on specific groups needs, i.e. CHARGE group had many medical personnel, geneticist, O&M, etc. The structure for these calls is about 30 – 40 minutes for the speaker and then 10-15 minutes for questions.

 Clara would literally poll the group to identify what they wanted to learn about next, or pull from the most recent topics.

Outcomes/Next Steps:

 Collaborative smaller group to draft proposal to NFADB for their participation/support on the calls.

 Full Collaborative: Determine our initial structure.

 Volunteers for group to draft proposal: Anyone can join in so let Toni know. Others: Ellen Bowman (Vol. Parent), Jessica (AL), Danna (TN), Joni & Martha (AR), Gwen (GA), plus Toni

 Toni is researching options for cheapest way to host phone conferences where there will be no cost to families.[TH1]

 Cassondra (Louisiana) volunteered to host the call one month as well as others.

 Toni has an Adobe Connect to offer its use.

 Clara –sending group a copy of the original flyer to announce the calls.

Next Meeting: Toni will send out a meeting wizard to determine when small group will get together.

[TH1]Posted this question to NCDB Tech Solutions 1.30.2014