I'm very interested in hearing about your impression overall.
The question on the table is about the number of proposals you've just heard.
There are some themes that have emerged.
- Care coordination.
- An overarching body to assure care.
- Integrating the parents.
That seems to be a place to start.
There is still a stress between those that want a disease specific medical home versus something that is more comprehensive.
I would try to level the playing field because that gives you more ability to deal with variations and local needs. There has been some testing for specific centers but it's not been tested against a well defined local entity.
There is a lot of great information here. Some processes is predicated on the assumption that we have a good tertiary system. The process has to account for the fact that the current funding mechanisms and lack of support are effecting our current processes.
If our specialists leave the state and our children's hospitals don't have money to fund these things then we're in trouble.
We can't take as an assumption that all these things are going to be there.
There is one group that was going to fix the budget so that would help.
We need to focus on sustainable and reachable goals for the foundation. There are also things that are reachable and short term and give us progress in the short term.
Some of you may have been in a meeting about a year ago and there was this bring down moment. We can do whatever we want. It's a matter of prioritization. At one point we had a mission statement that referred to this - and we have the resources in the system to do anything. We can change our focus. One of the roles we can play is to change the way we prioritize children in our society.
Americans don't value all kids. We value our kids (our own children). If we did would we pay a surgeon a third of the fee to take out a child's appendix versus a 90 year old?
At the beginning of the day we discussed whether we should build a separate system for children with special needs. I didn't hear anyone go that way in these last initiatives. We can build on what's there now and bring in modules that are needed as they are needed. Which speaks to the coordination issues we've discussed.
We've always had trouble crossing turf. There are turfs that we don't interact with. There is a great opportunity to make change now. What's the long term functionality of crossing turf?
We've seen how complex these issues are. Some of these flow diagrams are the antithesis of good flow diagrams. We need to think about simplification and the financial implications of that.
That may be another project for the foundation to consider.
The pediatric population is not a smaller adult. What can we do to educate the people with money to understand the special needs that children have? You can't use the adult stuff with children.
In our discussions we were encouraged to think broadly about children with special needs. As we dove down it got narrower.
There will be another workshop about a month from now. That will be a synthesis of these ideas. That will lead into a workshop with the board in November. This is the beginning of the three month process and what the foundation might be working on for a number of years to come.
It's a lot of work to think all day long. We appreciate your focus. Thank you from us. We appreciate working with you.
Thank you!! You all have day jobs and we really appreciate this.
To amplify on what Langdon said. We've done a couple of projects in this area. There is a white paper that is a description of the current system. It's an attempt to try to capture the system as it is today.
We also have produced a white paper on best practices in different states.
We're also looking at a deeper dive on California's data and that should be available shortly.
We're doing this meeting in October as well. One of the things we tried to get out of this is a community of interested individuals. We're going to try to keep this conversation alive and we'll figure out ways to do that. .
The web site of this work will be at the same address as the pre-event web site. As you look at this you will see the photos of people and the photos of the white walls you created.
There is also a text capture of the large group conversations. This is not a literal capture of what you are saying.
We also discussed the idea of a survey of a larger group so you might be hearing from us at some point.
As David mentioned, it's an ongoing process of developing a community and then how things might be implemented.
We look forward to working with you further.