Sunday, April 26

Taking action: Strengthening services and support for Children with Special Health Care Needs in Whatcom County

I barely survived the Future Search conference. Three days totally nearly 20 hours of conference time. And one episode of anxiety where I pretty much stayed in the bathroom and cried for ten minutes. But that is just a general overview, here are the specifics:

The conference involved approximately 80 people from the entire system locally. DSHS, each of the school districts, WWU, Businesses, Health dept, WCEL, parents, teens w/ special healthcare needs, doctors, nurses, therapists and many others.

We self-managed our work. We used dialogue, not problem solving as the main tool. We took responsibility for our perceptions and actions. We honored our differences rather than having to reconcile them. When some people agreed and others don't, that is a reality to live with, not a problem to be solved. We found common ground.

The first day involved a few different tasks, but one in particular was a mind mapping excercise (I'll add pictures to this later next week) which I can summarize by the top few system challenges that most of us feel (can I hear an AMEN!):
51 commented that there was a "disconnect with services that led to gaps or duplication"
45 commented that there isn't enough funding for capacity in the system (too few slt's, ot's, pt's in early intervention)
33 said there wasn't enough funding specifically in education (IEP's, etc)
23 said the bureaucracy was inpenetrable
21 felt a lack of social supports

We as parents have to go to one place to get one type of service, and then back to our home to get another type of service (if we have a 3yr old or under), and then go to Seattle Children's to get yet another type of service, and over to our primary pediatrician to get other services, and then drive up to WWU to get hearing and/or speech services, etc. No task is simple. The driving is endless. And let's not talk about the forms, paperwork, retelling our history. Maybe it's because Tommy is medically complicated. Maybe it's because we want the best for our kids. Maybe it's because each of us wants the best for all kids.

The tasks were different for each day, some involved looking into the past and focusing on the present to discuss trends effecting our system to care for children with special healthcare needs. We were in our stakeholder groups for many tasks (I participated in the family stakeholder group). Some of our tasks were performed in our 'mixed' groups which meant one family member, one member from govt, one from healthcare profession, one from business, etc.

My favorite task was when our 'mixed group' performed a skit of what our 'ideal' system would look like. It was a brick and mortar type version of Children's Village of Yakima. With over twenty services under one roof.

On the last day, as a large group of approximately eighty people, we didn't agree that the system change would 'look' like a Children's Village of Yakima, we did agree that the virtual type systems to put into place would create a similar 'umbrella' of services. No wrong phone number. One entry door into the system with what some participants termed a 'system navigator' or a coach who was always with you through all the eligibility/paperwork/etc from 0 thru 21 year old services.

I have been a mom for almost 16 years. I have been in mgmt of non-profits for over twenty. This conference stretched my skill set from both! Made me uncomfortable. Made me extremely happy and proud of each of my four kids. Made me cry. Made me feel empowered to make a difference. In the end, my specific tasks are in supporting our local Parent to Parent so they can expand and deepen their services. And to looking at ways to provide mini-respite to parents (not me myself, but rather local systems like existing childcare ctrs, or creation of a babysitting co-op for cshcn). I often reflect that Promise, our childcare center, is the example for others in caring for kids with special healthcare needs.

I really enjoyed the other parents at the conference. Many were in groups of business or ed. But in our Family Stakeholder group, a big shout out to Julee, Faith, Shari, Bill, Kathy, Karlene and Christine.

Now, here is the best part. The next meeting is Thursday June 11, 009. And you are invited. Yep, you. 11:30am - 2pm at St Luke's Community Health Education Ctr (3333 Squalicum Pkwy). The stakeholder groups from the Future Search Conference will report on what we have accomplished and hear what others have done. And we will all shape the plans for the future with each of you interested newcomers. Please come. If you are reading this, you are more than qualified and invited, and we need YOU!

Tommy Adventures