Initiatives
Langdon: OK, we're going to report out the results from this last round of work. We'll go in team order. Let's keep it to five minutes per team.
Team 1 - Telling the Story & Data Acquisition Report Out
We wanted to define the audiences:
- Legislators.
- Voters.
- We want to reach the general public.
- Families.
- We want to generate passion in patients and families.
- “Grass Tops” (influencers) – important people with connections.
- Thought leaders and opinion leaders.
- NPR hosts and Oprah are examples.
- They can present the information to their audiences and direct where they go next.
- Policymakers that are there from administration to administration. They need to understand the role they play and the people they affect.
- Resisters. Need to target them, as well.
Delivery mechanisms:
- We talked about doing something like the Inconvenient Truth video.
- Face to face interaction helps.
- We need to make the message intimate.
- We would do blogs and social networking, among other web strategies.
- It would help to find celebrity champions. Should find additional ways to collaborate and partner with others.
- Important to use media channels, too.
Crafting the message:
- Every child needs our protection. Children are our future and we need to be sure they reach their potential. Get away from labels like handicapped and the tin cup.
- We have to include a call to action, with bite size things that people can do.
- The cost savings angle is important. Show cost-benefit analysis that includes medical debt. Also, there are costs to society not to support this population.
- Systems and infrastructure matters. It doesn’t sound exciting, but we can make a huge difference if we put our efforts into systems and infrastructure. Show that it can be better.
- Convey that health is part of family values.
- Consider “sticky” and concrete catch phrases, like those used in the past, e.g. “healthy head to toe” and “deadbeat dads.”
- Message that children are not little adults. They need a different kind of care
Data collection:
- Need data on costs and inefficiencies in the system.
- Need clarity on the public and private sector split. Varying figures are cited.
- Show how medical success results in life success.
- Review existing data. What are the questions and the data we're collecting on the national survey? Let people know about that.
- Specific data to support the call to action.
- Need data about the “whole” child – families, mental health, divorce rates, etc.
- But guard against analysis paralysis!
Question: What should we do tomorrow? Pick one thing.
Craft the message would probably be one. Or the call to action - what is it we want these people to know and do? Need to put a face on this problem so it's concrete and people relate to it.
Team 2 - 1115 Process Report Out
Our recommendations were around providing resources to convene the right stakeholders and making sure this is aligned with other efforts.
The state can frame this but they need the expertise of the stakeholders to help them.
Toby was grateful for the possibility of the Foundation or some other agency supporting the 1115 effort by convening stakeholders, evaluating data and supporting evaluation pre- and post.
Team 3 - Convene Stakeholders Report Out
Convening stakeholders is a waste of time unless you know what is at stake. The engagement of stakeholders will depend on the results of this.
Look at log-jam issues. Obstacles to real changes and real movement in this area. Can we identify them and then figure out how to confront these issues to liberate the process.
The focus could be the waiver process. It could be the message creation. That specific something that we want them to do has to be identified.
People need to be excited about something or nervous about something in order to engage as a stakeholder. The scope of the redesign will be as a result of what people define the strategic contribution should be.
No matter what you do there are some potential training gaps that could be filled. There are some gaps in mentoring and helping families be more engaged. Also bridging the isolation that providers feel in engaging other stakeholders.
Team 4 - Eligibility Project Report Out
This was a team of three people.
We're trying to look at all the possible definitions of which children should be served. We looked at the pros and cons.
On the diagnostic criteria most of these are evident by themselves.
We also included the federal definition. We define special needs in terms of the federal definition but then the funding goes to different entities.
We didn't have a recommendation. Yes we did! All children deserve a medical home. That's where we were at.
Langdon
You might be a little tired about now. You were very productive. I'm interested in the thoughts you might have about these four boards.
What's your reaction to what the teams came up with?
I really like the specificity of the 1115 board and I'm very proud of this.
After all is said and done I'm not sure we have defined the goal of the Foundation project. What is the goal or outcome we are after?
It makes it difficult for me to recommend something without knowing what we are trying to accomplish. We have a whole range of things and I don't know what the focus is.
One of the factors of a group working like this is to step back and synthesize this. The Board will have something to say about this as well. We'll engage them in some design work next month. That will result in some choices that need to be made.
If I had my way, because the 1115 process has already begun it's critical to get into the discussion and be sure there is a spot for children. I have heard a lot today about something that needs to happen - and that is building that political will. It's the people that don't have kids and don't understand kids that we need to speak to.
I get more passionate about process more than outcomes. A lot of what is up on the board is process and it's quite rich. I am hopeful that the Foundation got what it wanted. When this process plays itself out in California people will point back to these meetings as playing an important part in that process. This was a very rich experience.