The Arc of Care Experience
Assignment Step 1
During their research, the Point Forward team interviewed 8 families of children with special health care needs. They have prepared posters summarizing the experiences of each family.
Each team will examine in detail the experiences of 2 families.
Your assignment is to discuss the care process as experienced by each of these families, and to explore the roles played by all system participants at each stage.
Please take about 15 minutes per poster to understand what each family experienced, including preparing a diagram for each one. Each diagram should show the interactions of various system participants as a timeline across the entire process as depicted in the story.
- What was the experience like?
- What were the major events in the story?
- What worked?
- What didn't work?
- What were the big problems?
- What were the solutions?
- Who was involved in each event?
30 minutes total
Please see a member of the facilitation team for Step 2 of the assignment when you’re finished.
Assignment Step 2
Please discuss the two experiences by thinking about:
Plus: What aspects of the stories strike you as particularly positive?
Minus: What aspects of the stories strike you as negative, or needing correction, etc?
Interesting: What aspects of the stories are notable, unusual or unexpected, although they may not be especially positive or negative per se?
Please take 30 minutes to prepare 3 lists, each one on a different sheet of paper.
You will share your work with other teams when we’re finished.
Towards the end of that round of work I asked if you would share one plus, one minus and one interesting. What's the one thing that's the most interesting or the most provocative or the thing you want to share with us the most.
The pluses - we noted care coordinators with a good sense of the system that could plug families into services.
The minuses - it was unclear about the concept and presence of a medical home. Fragmentation - the services were there but not accessible.
The interesting - one family was the victim of a political debate. The luck of geography was interesting - they would not have been able to access the quality and quantity of services in certain locations.
In terms of minuses - both families had geographic challenges in access to specialty care.
Most interesting - we picked two. The upcoming transition issues and both of them are getting mental health services.
The pluses - we were impressed with the skills of the mother that took her skills and turned them into an income opportunity.
For pluses we felt both of them were able to get access to insurance and get into school.
Minus - one situation the parents weren't engaged adequately in decision making.
Most interesting - there was a dichotomy of the amazing surgery being received and the family going through considerable stress.
For team four we had a brain tumor and recurrent A.L.L. The plus was we were struck that a family in extreme economic condition could receive such good care. The minus is that the system doesn't assure such good services.
One interesting thing was the significant impact that the parent’s self-efficacy can have on the experience and system performance.
The major plus was they were linked to many support resources in a relatively short time span.
The social workers functioned very well and the families got a lot of what they needed.
Inadequate cultural support was a minus. They could connect to their primary care physician but outside of that there were language barriers.
The interesting was the cultural thing. One had an issue with using US resources. The need for understanding cultural assumptions and how that changes based on the country of origin is important.
The family reached out to friends and advocates and that changed the outcomes.
The minus was the need for sub-specialty services moved them away from their circle of support.
The interesting thing was a family made riskier choices just to be at home in their community.
Access to excellent specialty care was the plus.
Tremendous out of pocket expense for the families was the negative.
The lack of relevance of the medical home was interesting.
We had a child with A.L.L. and one with spina bifida. They had great medical specialty care. Trying to maintain the support around that care is important. The negative is the funding mechanisms around that. What was interesting was the variability between the different locations.
I want to transition and start thinking about the system level. We've looked at problems and solutions and we've looked at personal issues and we've looked at models and now we want to start building models. We want to conceptualize a new system.
A system consists of parts. The dynamic thing is the way the parts interact. Tomorrow we'll build a more detailed system model.
Presumably we will finish the assignment after the speech.
To give you a some additional information, we're asking you to adopt a point of view and come from that point of view in this assignment. We're asking you to put the viewpoint of your team in the center and look at what you give and get from and to the other players in the system. We'd like to see a diagram of some kind.
The purpose is to begin to look at inputs and outputs.
The nuance is how specific do you want the assignment to be. You should decide how you want to address that. We have attempted to put people on these teams that have some expertise in that view point. We've got about half an hour and then we'll come back here to watch the speech.