Assignment Part A
Part 1 should take about 25 minutes
In your group of 4, please take a few minutes to think about your own personal experiences as a participant in the health care system for children with special needs in California or elsewhere. You may have experiences as a recipient of care (a patient), a family member, a health care provider, an insurer or payer, a community or agency support person, and you may have also experienced the system in more than one role.
From these experiences, please choose one story, or example, of a situation in which the system really worked well, and achieved a positive result that you were happy about and perhaps proud of.
Each member of your group would then please tell this story to the other members of the group, and each story could be about 5 minutes long.
Once each member of your group has told their story, please get a copy of Part 2 of the assignment from a member of the facilitation team.
Assignment Part 2
Part 2 should also take about 45 minutes.
Once the stories have all been told, please help yourself to lunch at the buffet.
Return to your work area with your food, and while you eat, please discuss the stories.
Please develop a list of :
- Elements that the stories have in common
- Principles that the stories elicit
- Processes that are evident in the stories
We’re looking for the themes, topics, ideas, experiences, etc. that are common to the experiences of patients and families.
Please write your lists on a sheet of flip chart paper.
We will reconvene in the large group area when you are finished.
Everyone had the same assignment but your stories are different. In your story telling, what are some of the things that jumped out at you? What were the things that stood out for you?
We had three very interesting stories and we all felt there was collaborative problem solving involved in providing care.
Having champions, perseverance and advocacy.
The idea of collective agency. It takes a collection of people to make changes. One of the things that stood out for me was that it all has to do with people and the human interactions.
The willingness to listen to each other and recognize the expertise to get to a solution. There are certain people that are committed to going the extra mile to find a solution.
We were struck by the human interactions. That doesn't always happen in our system. Parents are effective advocates and when they are appropriately sweet and really touch us that helps make the system work for them.
We had different stories and different areas. One thing focused on the need for a centralized program that pushed kids into a coordinated care program. There needs to be more education to get people aware of those systems.
We talked about the voice of the patient and if institutions had that formalized then change could happen more easily.
We talked about the cultural differences between health care providers and families. Parenting resources need to be harnessed and strengthened.
Each of us found ourselves acting as a broker for someone wanting to do something for people and dealing with a very codified system. The characteristics of the system seem to be rigid. On the client side there was a collaborativeness and a homogeneity among them.
We were struck by the importance of reflectivity - what is working and what's not working - and making major changes where necessary.
We then reflected on why these stories reflected on us. It was joyful in actually getting the system to work!
Because it took such an effort and focus on different agencies it kept the children in their home and it resulted in a huge cost savings.
What is the balance between that and standardization?
It seemed that a lot of success stories are based on some connections. You have to be extraordinary to make something good happen. What about a system that allows ordinary people to do something really well?
Parents don't start out extraordinary but they become extraordinary by the support you give them. These are ordinary people that did this but they were committed and you have to have that kind of commitment for every child.
The role of family, environment, culture, and primary care providers aren't just providing primary care but they have this connection with the outside and the community which includes the churches, etc.
Reflecting on the comment about extraordinary. The system seemed to be functioning well for most of the children in that system but these were extraordinary because the situation was different. These are special unique circumstances and even well functioning systems can be stressed by these things. What everyone is saying that the system is broken - what is extraordinary is the challenges you face at the level of care we are all working in.
The issue of flexibility is probably critical here. It's often not flexible enough. The way that people interpret how it should run could be an issue as well.
In our group we talked about the need and ability to negotiate. The clients need to be able to negotiate as well. You have to understand the system well in order to do that negotiation.
The system works well for most of the children most of the time. If we are talking about a broad definition it's evident that some get very good care and some don't. Who is getting that good care and who isn't?
Part of what I'm struggling with is defining what 'the system working' means. If you get one thing at a particular juncture you are thrilled. If you spend every day and it takes three hours to get a phone call completed that's terrible.
We have to define success and what it means to really work. What are our measures? Who are we after? The different people in the room will have different criteria.
The child and family perspective - it's appropriate to measure the system as a whole. How many people experience a full/whole system? It's less than 1 in 5 at the upper end that are meeting the basic criteria.
The activity asked you to focus on the positive. The structure of the activity was success stories.
I was beginning to alternate between our story and then applying it to the system. That's what we want to address as we think about an ideal system. It's important to keep that dichotomy in mind. What should the system do for the individual? What should it do for the aggregate?