Theme: Shared Decision-Making

“Sometimes families need permission for an off-ramp.”

Page: 3 of 6

“Sometimes families need permission for an off-ramp.”

Dr. Terri Major-Kincade describes how she talks with parents and caregivers of children whose baseline is declining. She talks about how it is OK to revisit goals, which can be an especially big change for those families who have previously chosen interventions. “A lot of times family have said, this is my line. And we try to remember where their line is. But I wanted to be able to circle back and say, how are you feeling today? How are you feeling about today’s plan? If this plan is not consistent with your values, what would it be? What are you wishing for now? … We need to kind of explore that because people have to be safe enough to talk about, I love my child. And today, love for my child does not look like ….” (There is so much good instruction in here: hopes, worries.)