Problems and Solutions
Good morning everyone. Thank you all for engaging in that activity enthusiastically. we'll be working with those ideas throughout the day today and tomorrow.
We're going to do a detailed introduction. If you looked at the invitation or the web site we said this would be a fun filled day with lots of moving around. You are welcome to leave your bags.
We're going to go into teams for this next round of work. We'll put the teams up here.
The assignment is to think about several things. What will the world of 2020 be like for special needs youth and what are the biggest problems?
You will have a written assignment in the breakouts. I'm asking you to take about 45 minutes to do this. We'll ask every member of the team to come up to the front of the room and introduce themselves. We have lots of work we want to do today. There won't be enough time to do the work. We work on the 80/20 rule and that means we can get 80% of the work done in 20% of the time.
We'll photograph the walls, print them out, post them out so you can find them.
We'll do a more detailed introduction in a little bit.
As I mentioned to the groups we're going to go in order 1 through 8. We'd like to meet each member of your team. We've taken a picture of your wall and we'll project it up here. I'll be keeping time in the back. I'd like it if you can keep this to 5 minutes - which isn't a very long time. Everyone had the same assignment. If there is anything that you feel is really important or if there is anything that you disagreed with please let us know that. Disagreement is an important part of the design process. We're not looking for consensus. We're looking for ideas.
We'll start with Team 1. Please introduce yourselves. There is a tremendous amount of expertise in the room and that's important for you to know who is here.
Group Report Outs
For this activity we’ll work in teams.
Please find your breakout area, and introduce yourselves to one another.
Working as a group, please discuss the questions below and note your answers on your white board.
When we think about the existing system of care for children in California with special needs …
- What will be the major characteristics of the world of 2020, and what will this mean to special needs children in California?
- Again, let’s say that all of the individuals and organizations that provide and pay for health care for children and youth with special health care needs in California constitute a “system.”
What do you feel are the 3 most significant problems in the system?
- What do you think are the best solutions to those 3 problems?
You have about 45 minutes for this activity.
You will share your work with the other participants when we’re finished.
For the report out, please have everyone on your team at the front of the room, and we will ask each individual to introduce themselves very briefly as part of your team report.
I didn't realize that what I wrote was going to be here.
We had a diversity of opinion. Electronic media would be the primary means of communication. Most families with children with health care needs would have access to better information but some wouldn't.
The demographics in the US will shift towards the elderly and that will put pressure on the funding of health care for young people.
Family structures will be diverse. The health care delivery system will have to be more flexible.
There will be significant advances in medical knowledge and that would mean we will identify people with risks earlier. That could cause increased costs and/or rationing.
The overriding one is fragmentation and lack of funding for services. If we were to enroll the entire child into a case management structure to provide comprehensive services to the needs of the family - for publicly funded children and privately funded children - that would be good.
There is a distinction between public health strategies and personal health strategies.
We need a centralized and coordinated system for families with children with special needs.
Healthcare funding is out of whack with these needs.
We think the state will be weaker than it is now. Local and regional governments will have more influence too.
Increasing diversity in demographics and the increasing distribution of income (poverty) will cause more problems.
There will be significant ethnology changes.
Providers in CA and the US overall will decline. There will be more providers coming from other countries into this country and into this state.
There will be a declining standard of living and a declining of the sorry state of the public education system.
What this means for children with special needs is that we will see regional disparities. More responsibility will shift to the families.
We talk about different care providers that will be needed in the system.
We have a lot of silos and rigidity in those silos.
We spoke about the public health and the health care system operating separately.
There is a lack of family centered solutions and care.
We think there is a principle that applies to address these disparities - equity.
We want a family centered, culturally competent system of care.
We're suggesting connecting health care, public health, mental health, social services, and education into a fully integrated system.
We also talked about access. There should be no wrong door to access quality of care. Where ever you enter that system should be OK.
We were focused on technological advances - not just communication but also advances in medicine. Molecular genetic medicine to the bed side will lead to better diagnosis and care.
We will have more kids with healthcare needs living longer. The care will be increasingly complex and because of the aging of the population there will be an awareness that the needs of the elderly is similar to the needs of children with special needs.
Social security and medicare will really be in crisis.
We summarized what we saw as more pressure for evidence based medicine as these technological increases happen.
The system problems are related to money but not just availability but waste. There are political challenges. A for-profit system isn't necessarily the best.
Fragmentation and lack of coordination was mentioned as well.
If we start to change drastically the way money flows will we stifle research? How will we make those advances.
We want to use technology to coordinate medical centers, schools and families to leverage everything. That includes things like Skype between the home and the provider.
Reform the current payment system or redo it completely. We have to standardize things - access, payments, aligning the money flow and standards of practice and incentivizing providers.
There is a lack of a quarterback in this system. Who is the quarterback of the care? The provider? The parent? The coordinator?
It's a positive / negative thing. There will be more cultural diversity, more crowding, a continued shortage of nurses; aging baby boomers. Schools increasingly not able to provide services.
The positive side is that people will be taking more responsibilities for their health. There will be more universal coverage. There should be better and smarter use of resources. There should be less overlap and specialized roles. We talked about a system wide triage. Families and providers will be more educated about realistic expectations. There will be more 24/7 access - broader and more access.
We skipped the problems.
Our solution is a funding and developing a program for schools. We want to reinvigorate them to provide healthcare. We think that's a public private partnership.
We liked the idea of a medical home - every child needs a medical home.
We see some form of technology system - communication system; there could be state standards on communications and on sharing information, including having patient and family access to that information.
Prevent the preventable. Preventative care - things like announcing calories in restaurants, and smoking - bringing marketing and branding into it.
This is all pretty familiar. General pediatricians will spend more time on chronic conditions. There is a larger role for technology. There is an increase of disparities in class and socioeconomic status. We think there will be more natural and man-made disasters.
We see insufficient funding and continued budget problems. Increased access and an increase in evidence based medicine will also be there.
If we don't do something now to deal with the budget we won't build a better system. The lack of a unified system of care and lack of accountability is key. Changing epidemiology of kids without increasing resources will be a problem. There is an increase in severity and a decrease in community support.
We need fundamental budget changes in the state. We need to look at tax policy that creates a stable state and we need to look at the initiative process.
We need a statewide system. We like the idea of local support for delivery and we talked about medical homes.
There needs to be payment reform to insure effective payment for all services. We need to plan for the changing epidemiology in the state. We need to increase use of technology for creating caring transactions.
The overarching principle is having a strong role of families and youth in any redesign of the system.
2020 - we had a somewhat more optimistic perspective. We did see aging populations and increasing chronic illness. The changing balance of power in the world could be a good thing. We also saw environmental changes and technology changes. There will be healthcare reform and universal coverage.
Community and place based solutions will be there. We are hopeful there will be an increase of diverse family care.
There is more emphasis on prevention needed. Increasing diversity requires different competence.
There needs to be a focus on inclusion.
We were influenced by what's been done in BC. They identified three problems - waits, gaps, and overlaps. There are gaps between services and there are overlaps too. There is inadequate quality and quality of care and performance measures. There is insufficient evidence base for children's health. The third is the need for coordination and collaboration between agencies. The challenges of sharing data was an issue there.
We need a strong and universal early development and service system. It should be function and not strictly diagnostic based. There needs to be an effort to develop an evidence base of practice.
We suggest simplifying the pathway to services. A critical step will be trust building to accomplish inter-agency collaboration and coordination.
We named our report California Dreaming. We think the system will be well funded, efficient and coordinated. We need information translated into several languages to support the various cultural diversity needs in the state.
We came up with a number of problems. Coordination was the first one. Coordination of services and resources and getting them working together. Lack of consistency and standards in different counties and cities was another. There are different qualities of care in one city to another. Quality - the quality of care is more important. It's about relationship and not about getting in and getting it done. Effective funding was also something we identified - and quality of care ties into that.
For each of the six federal MCHB core outcomes, we need to define what they mean for California and decide how to measure our achievement of them. We also need well trained professional - translators in particular. We need cultural brokers. They are very important in the healthcare delivery.
We see that there will be a larger population of children with special health care needs. There will be a greater diversity in cultural groups. Genetic testing could lead to more people identified with special needs. There are also ethical questions related to this.
There will be increased use of technology and sharing medical information. There will possibly be less money proportionately for each child.
There will be a focus on extra-ordinary care. The variety and the availability of care as well.
The problems out weighed the solutions. We picked five areas - under funding, issues of coordination and continuity of care, there is an irrationality to the system; there is vested interests and that leads to a lack of change in the system. There is an issue of isolation of families with special needs children - especially cultural families.
An overarching coordinating agency (creating a new bureaucracy). The need for standards so there is similarities between regions and cities. Many folks that are providing services are embedded in the health care system in some way. Possibly using social HMO's. They were popular in treatment of the elderly about 10 to 15 years ago. They were local integration of a lot of services. They were provided by a single agency that was accountable for the overall system.
That's one idea for coordination and delivery.