Tuesday, April 21

Searching for a future

Tomorrow thru Friday I will be participating in our local "Children with Special Healthcare needs" future search. I was asked to attend as a mom of a child with special healthcare needs. What is Future Search? That was my first question too!

Here is a definition that I found:
Future search is a PLANNING MEETING that helps people transform their capability for action very quickly. The meeting is task-focused. It brings together up to 80 people in one room.

Future search brings people from all walks of life into the same conversation - those with resources, expertise, formal authority and need. They meet for 16 hours spread across three days.

People tell stories about their past, present and desired future. Through dialogue they discover their common ground. Only then do they make concrete action plans.

The meeting design has been tested in many cultures for the past 50 years. It relies on mutual learning among stakeholders as a catalyst for voluntary action and follow-up. People devise new forms of cooperation that continue for months or years.

In our local area we are hoping to create a new system for caring for Children with Special Healthcare needs. Many decisions that we have struggled with as a family involve our local hospital not being able to meet our medical needs and making the continued choices for care at Seattle Children's.

A memorable moment was early last year Tommy was admitted to our local hospital for RSV/Pneumonia and on the first day of our 10 day admission (which by the way is the average hospital admission stay for a child with Ds and RSV) the nursing staff informed us that they didn't stock Gtube supplies. One extremely kind (Shari) person at our local healthcare supplier drove our supplies to the hospital. But imagine our disbelief when the nursing staff said their hospital didn't believe that it was their job to care for Children w/Special healthcare needs. Only sick kids was their job. Those 'other' kids go to Children's Hospital. It was one of the many moments that I wanted to be involved in local system changes.

Perhaps our new local healthcare system will looks more like Children's Village in Yakma, Wa (really cool place). On site child care for siblings while we attend to OT, PT or Speech all within the same building. Orthotic fitting, gtube supplies, etc together in one place? Perhaps it looks much different. I'm excited to participate in the next few days and will post more about my experience. Change. Long overdue change. And Tommy's lifetime will be better for it.

Tommy Adventures