Guiding Principles and Places to Intervene in a System
Langdon
We could have a really interesting conversation about what you have just finished. I'd like to have a conversation in your design teams in a design mode.
The sheet on your chair has some information about systems (download a PDF version of this document).
Bryan was scribing on this board over here - the quality of interactions was a big determinant in the quality of the outcomes - and that parents have a big part of that.
The kinds of needs we are talking about are extraordinary needs so we end up with a lot of programs that have been created to address extraordinary needs. Can we design a system that doesn't include these silos?
What we are looking for is a capability that enables the people in the system to manage exceptions regularly.
One thing that's confusing is that we have a number of systems designed to manage exceptions but none of them work well together.
The rest of the document goes on to say there are nine places to intervene in a system. This is a suggestion and not something you have to think about linearly.
The assignment. There are three assignments. The assignments are in your break out areas. We're going to design an ideal system so what principles do we want the system to guide the development? Three teams are looking at places to intervene in the existing system. Three teams are working on ideal system design and the final two teams are looking at the biggest problems in the existing system and how would you fix them.
Are we talking about separate existing system for people with complex needs or the existing system for all children? I'm struggling with this. The system for all kids or a system for children with complex needs.
Needs change over time as well.
Part of the reason we came to this is the overall determinant of the health of all children is the health of these kids. We have one system of care. Is there an advantage to creating a separate system? There are reasons to do that and there are reasons not to do that. The existing system is one system and programs within that system that deal with these kids. Do you create a separate sub-system for these kids?
If you are in France, or Germany, or Canada there is a system of care for all kids. They consider enhancing that for children with special health care needs. We don't have a single system of care for all kids. We almost have to make an assumption that we need that.
In your team, please discuss the following questions, and note the major ideas and your answers on your white board.
Step 1
Our goal is to design an ideal system for children with special health care needs in California. Please identify the top 5 – 10 Guiding Principles that must be adhered to in the design of an ideal system.
A “guiding principle” is a concept, rule, policy, or key idea that significantly influences how people behave, the determination of their goals, what they aspire to, and the experiences that system users should expect when interacting with the system.
Please take about 20 minutes for this activity.
Step 2
In prior activities we have explored 4 different viewpoints. Now please identify 5 – 10 useful and effective system interventions or leverage points per viewpoint (listed below), which, if they were implemented in a major or minor way, would notably improve the performance of the system. Please explain in each case why it is a leverage point, how it improves the system, and who benefits from the change.
“Patient and Family” Viewpoint
“Health Care Provider” Viewpoint, eg, doctor, nurse, dietician
“Insurer or Payer” Viewpoint, eg, Blue Cross, Kaiser, CCS
“Family Support Services” Viewpoint, eg, case manager, social worker, care coordinator, family advocate, nurse practitioner
Which of these could have the most powerful viral or cascading effect through the system? (A cascading effect is one where a potentially small initial effort spreads through the system and expands its impact.)
Please take about 70 minutes for step 2.
Team 1 Report
Are you ready for wisdom to be imparted?
We identified ten Guiding Principles, which we condensed into four:
- The system needs to be responsive to the child and family
- Minimize the burden on the family
- Treat the whole child
- Equity – Provision of service needs to match need (economic, language, geographic, etc.)
- Comprehensive – Everyone needs to have access to ALL of the appreciate expertise
- The system needs to be dynamically improving over time.
- Accountability
- Efficiency
- What are the mechanisms for dynamic growth and change?
We then identified a number of leverage points for various stakeholders in the system.
For the child and family, there are three fundamental issues. First, the family needs to have mechanisms that empower them to engage the system. Second, we need to unburden the family – this is a shared societal responsibility. Third, we need to recognize that the child needs and family needs will diverge in some circumstances (for example, in the case of dysfunctional families or foster care). The ultimate divergence is when the child moved into adulthood. This is a question of special protections that need to be in place in the system.
For the providers, we are talking about three major points. The first issue is appropriate reimbursement and caseload. The second issue is that you must have a responsive larger system of healthcare for kids – a pediatrician cannot serve these special needs kids if they are required to be a well-child factory just to maintain their incomes. The whole system has to change, not just the piece for special needs. The third issue is “dynamic expertise” – to meet the needs of these children, the providers need to undergo continuous training to be prepared to deal with these kinds of complex issues. Regional systems require cognitive training in order to work – we need to engage the PCP’s, the sub specialists and the hospitals to work together differently.
There are two major issues for payors. First, payors need the necessary and honest data. Second, payors need to share risk – the payors should not be the ultimate holders of all of the risk.
Family support has a couple of issues as well. The alteration of the system should give social workers the financial capability to direct services throughout the system, including financial.
In your team, please discuss the following questions, and note the major ideas and your answers on your white board.
Step 1
Our goal is to design an ideal system for children with special health care needs in California for California. Please identify the top 5 – 10 Guiding Principles that must be adhered to in the design of an ideal system.
A “guiding principle” is a concept, rule, policy, or key idea that significantly influences how people behave, the determination of their goals, what they aspire to, and the experiences that system users should expect when interacting with the system.
Please take about 20 minutes for this activity.
Step 2
Imagine that there is no existing system to address the health care of children in California with special needs. Yesterday there was a system, but now it’s (mysteriously) gone.
Your assignment is design a new system, taking into account the Guiding Principles that you identified in the first part of the activity.
On the accompanying instruction sheet, we describe 8 aspects of a typical system. Please address all 8 aspects in your design.
The constraints on your system design are:
- That it must not be science fiction. So, for example, we cannot magically cure all the children of their diseases.
- That the system must operate with approximately the same financial resources as the existing system operates with.
- It must be consistent with Federal regulations (but may include assumed changes to California regulations).
Please depict your system using models and diagrams (and not just in bullet points).
Please take about 70 minutes for step 2.
Team 2 Report
We started with guiding principles. There are ten:
- Culturally competent
- Covers all special-needs kids
- Appropriate care where needed
- Consistent administration
- Patient/family centered decision making
- Coordinated “health” care – not just medical issues
- PCP needs to be involved
- Ensure Quality and be outcome-responsive. Practice guidelines will be used
- Include the entire child
- Develop an adequate workforce with sufficient reimbursement
Our model has PCP at the center. The Primary Care Provider needs a sufficient number of patients with these special and complex needs – roughly 40% of their practice. This will help them be comfortable with these kinds of complex issues. In Salinas, for example, three pediatricians could build a specialized practice in this model. They could develop specialized relationships with the other necessary providers. Their entire team (nurses, MAs, etc.) need training as well. We want them to work closely with a team of other service providers outside the practice (PT, OT, etc.)
What would be the relationship with private and HMO sub specialists? These pediatricians need to develop relationships with cardiologists, tertiary care centers, etc. These relationships will be functional from both a medical and economic standpoint. The question is how many of these kinds of PCP specialists would we need – this needs to be determined by the community of pediatricians.
How do we pay for this? There needs to be rate-adjusted care – groups taking on these complex patients should be reimbursed at a higher rate. This care will prevent expensive hospitalizations and catch a number of conditions earlier on to save cost. Local care will provide more sensitive care for families.
How can we create a plan to cover this? The child will be included into a special needs plan. This plan will cover the whole child. All special needs Medicaid kids will be included. It will also include all CHIP special needs kids. Commercial plans can buy into this plan as a form of re-insurance. Patients would need to have a medical diagnosis that qualifies for the special need plan– this is similar to John Kerry’s proposed catastrophic care plan from the 2004 presidential election. (We did not tackle the criteria for medical qualification for the plan – what does “special needs” mean? In general, qualifying conditions would be similar to the current CCS qualifying conditions)
A plan like Kaiser Commercial Plan would fit into the private insurance box. Government will not require Kaiser to move a qualifying child into the Special Needs Plan. That would be a business decision proprietary to Kaiser.
However, Kaiser and other commercial plans would need to buy into this system to allow their patients to participate. Once in the Special Needs Plan, the patients would be eligible for all primary care, medical home and specialty services covered by the plan.
In your team, please discuss the following questions, and note the major ideas and your answers on your white board.
Step 1
Our goal is to design an ideal system for children with special health care needs in California for California. Please identify the top 5 – 10 Guiding Principles that must be adhered to in the design of an ideal system.
A “guiding principle” is a concept, rule, policy, or key idea that significantly influences how people behave, the determination of their goals, what they aspire to, and the experiences that system users should expect when interacting with the system.
Please take about 20 minutes for this activity.
Step 2
Imagine that there is no existing system to address the health care of children in California with special needs. Yesterday there was a system, but now it’s (mysteriously) gone.
Your assignment is design a new system, taking into account the Guiding Principles that you identified in the first part of the activity.
On the accompanying instruction sheet, we describe 8 aspects of a typical system. Please address all 8 aspects in your design.
The constraints on your system design are:
- That it must not be science fiction. So, for example, we cannot magically cure all the children of their diseases.
- That the system must operate with approximately the same financial resources as the existing system operates with.
- It must be consistent with Federal regulations (but may include assumed changes to California regulations).
Please depict your system using models and diagrams (and not just in bullet points).
Please take about 70 minutes for step 2.
Team 3 Report
We developed 9 guiding principles knowing that our reviewers would help us develop one more (see wall).
Our second assignment was to blow up what exists today and design something new. Our new environment are all of the entities that optimize the health, wellness and development of a child within context of family, culture, structure, beliefs, etc.
We envision the medical home as primary continuous longitudinal care with a care coordinator. For the child with special needs, there should be no wrong point of entry. Care needs to be accessible, individualized and continuous as a self-learning system.
There also needs to be evidence based care and nitration and coordination across sectors that impact health.
We also defined that family and behavioral health support would be co located at schools with joint funding.
Funding would come from multiple state pools. There would be a board of directors that run a trust which allocates funding to promote health throughout the state. There would be joint funding streams feeding into the entity including non-profits, government and private industry. Private insurance would still be available, but some portion of the general fund would be provided by insurance entities.
Financing is the major issue in this model.
In your team, please discuss the following questions, and note the major ideas and your answers on your white board.
Step 1
Our goal is to design an ideal system for children with special health care needs in California for California. Please identify the top 5 – 10 Guiding Principles that must be adhered to in the design of an ideal system.
A “guiding principle” is a concept, rule, policy, or key idea that significantly influences how people behave, the determination of their goals, what they aspire to, and the experiences that system users should expect when interacting with the system.
Please take about 20 minutes for this activity.
Step 2
- We have spent a lot of time discussing the existing health care system for special needs children, including looking at what works and what doesn’t work.
Please make a list of the 25 aspects of the system that don’t work.
Which ones are the worst, in the sense that they have the most deleterious impact on children and families?
Please design a systemic fix for the 5 five worst aspects of the existing system. By “systemic fix” we mean a comprehensive and enduring solution.
Your solutions may therefore involve an intervention at any level.
Please depict your system using models and diagrams (and not just in bullet points).
Please take about 70 minutes for step 2.
Team 4 Report
We identified 12 guiding principles and then identified three priority problems out of 25 items that are not working in the current system.
- Structural budget problems, poor payments/bad payment system
- Lack of common vision – accountability, common framework, leadership, coordination, collaboration, etc. etc.
- Families not part of planning
To address the lack of the common vision, we first said that the federal infrastructure should be strengthened, with a collaboration of agencies and funding for children. In California, we recommended creating a State Office of Children’s Health, which would bring together all of the key agencies and programs, including family organizations. Perhaps we would have a “Czarina of Children’s Health.” This group would direct the vision and ensure accountability, coordination, collaboration, innovation, and control blended funding.
Lots of questions came out of this approach and we think that we should ask Vancouver how they did it!
To address families becoming true partners, we envisioned a process to find the right answer rather than actually finding it today. First, we need to harvest and synthesize current innovative and existing tools/techniques that are effectively doing this. Next, let’s ask the families to help design the solution. What do they want? What do they need? What tools can be provided to meet the needs of so many different groups? Finally, construct a California model and implement (and evaluate) a prototype. Families and technology would be heavily involved in this process.
Our third item to address was the structural budget. We want to look at other states/nations to see what effective strategies have been used, such as children’s trust funds. We then would create a kind of financial innovation lab, involving the business community, in which we’d develop/test funding options. The funding structure would need to be more child-focused than adult-focused and flexible enough to identify and respond emerging needs that we can’t foresee today.
In your team, please discuss the following questions, and note the major ideas and your answers on your white board.
Step 1
Our goal is to design an ideal system for children with special health care needs in California. Please identify the top 5 – 10 Guiding Principles that must be adhered to in the design of an ideal system.
A “guiding principle” is a concept, rule, policy, or key idea that significantly influences how people behave, the determination of their goals, what they aspire to, and the experiences that system users should expect when interacting with the system.
Please take about 20 minutes for this activity.
Step 2
In prior activities we have explored 4 different viewpoints. Now please identify 5 – 10 useful and effective system interventions or leverage points per viewpoint (listed below), which, if they were implemented in a major or minor way, would notably improve the performance of the system. Please explain in each case why it is a leverage point, how it improves the system, and who benefits from the change.
“Patient and Family” Viewpoint
“Health Care Provider” Viewpoint, eg, doctor, nurse, dietician
“Insurer or Payer” Viewpoint, eg, Blue Cross, Kaiser, CCS
“Family Support Services” Viewpoint, eg, case manager, social worker, care coordinator, family advocate, nurse practitioner
Which of these could have the most powerful viral or cascading effect through the system? (A cascading effect is one where a potentially small initial effort spreads through the system and expands its impact.)
Please take about 70 minutes for step 2.
Team 5 Report
We focused on principles for designing a system and then the priorities that go under each of the categories: patient/family, provider, family support services, payor.
We said that the system had to be holistic because it’s not just the disease that needs to be focused on. It needs to be affordable and cost-efficient. It must provide comprehensive coverage. It has to be accessible. It must be clear, understandable and transparent: what the system is providing and to whom. It must be culturally and linguistically competent. It must be flexible—we can’t put these kids into a cookie cutter. It has to be measurable and the outcomes must be assessed. If we want positive outcomes, we need to be flexible so that they can occur. The system must be held accountable to the community, to organizations, to the state and to the patient. The system must be able to sustain itself. And it must be timely in transitioning the child and family into adult care.
The guiding principles are almost identical to the ones we came up with in our groups as well! It’s a great list.
For the patient and family the funding sources need to be transparent as well as what’s available to them. The types of services need to be well defined in terms of what will happen and what to expect. It would be great to have one funding source. There should be one key care coordinator to provide parental guidance, training and education. We need to assess various levels of parent advocacy capability and work with them from that starting point. This person is a one stop shop for the family for coordination and medical home. This person does it all. They have to carry a reasonable case load.
The health care provider either provides an adequate or increased number of experts in each specialty. They need to be able to refer if a provider is not present in the child’s geographical area. Will regional be cost efficient so that one big center can do it all? I’m a big proponent of regional centers—a new system of centers that are located geographically. Other groups came up with this idea as well. The statewide system relates to the regional centers and the regional centers provide the one stop shop in the form of the key care coordinator. That center might send them somewhere to get a specific answer. That’s the only way we can be cost efficient and take care of the kids. It would eliminate a lot of duplication. We want telemedicine and electronic records to be transferable immediately to aid in diagnosis and coordination of care.
Another team talked about handoffs. The handoff between counties is terrible. There should be a statewide system that can transfer records and care easily instead. There is excessive overutilization of diagnostic testing because records are not transferable. There’s no reason for each provider organization to need its own data generated.
Family Support Services. There needs to be respite care. For example, parents need a date night. A camping program for the kids gives the parents a week of time to themselves. There needs to be an increased number of care givers at home. The services need to be culturally competent. There should be more money for parent support groups. Most of the services in this area are not reimbursed so they are in danger of being cut at any time. Something needs to be done to make them more stable. There needs to be more training developed for case managers and social workers.
How did you look at the way in which the special care needs are organized in the state? We identified lack of strong state leadership as a great problem—in the top five. We proposed that there be a strengthening of the special needs care program and a strong state leader with more authority and responsibility to set more consistent standards across the state.
We said that the department of managed care, the ombudsman office and the department of corporations make sure that payors are covering appropriate care. But whoever leads the state program needs the authority and responsibility to make sure that there is consistency and quality. There could be a process for standards, measuring and reporting quality.
All of this is predicated on the need for a separate system for these kids.
We have one system joined at the top at the state level.
In your team, please discuss the following questions, and note the major ideas and your answers on your white board.
Step 1
Our goal is to design an ideal system for children with special health care needs in California for California. Please identify the top 5 – 10 Guiding Principles that must be adhered to in the design of an ideal system.
A “guiding principle” is a concept, rule, policy, or key idea that significantly influences how people behave, the determination of their goals, what they aspire to, and the experiences that system users should expect when interacting with the system.
Please take about 20 minutes for this activity.
Step 2
Imagine that there is no existing system to address the health care of children in California with special needs. Yesterday there was a system, but now it’s (mysteriously) gone.
Your assignment is design a new system, taking into account the Guiding Principles that you identified in the first part of the activity.
On the accompanying instruction sheet, we describe 8 aspects of a typical system. Please address all 8 aspects in your design.
The constraints on your system design are:
- That it must not be science fiction. So, for example, we cannot magically cure all the children of their diseases.
- That the system must operate with approximately the same financial resources as the existing system operates with.
- It must be consistent with Federal regulations (but may include assumed changes to California regulations).
Please depict your system using models and diagrams (and not just in bullet points).
Please take about 70 minutes for step 2.
Team 6 Report
We did the idealized system. The first question we had was, “is this a system for children with special needs or just for child health?” We said it was for children with special needs, but that’s hard to build when there isn’t a system for children in general. We had folks from BC here in the team and that’s what they did—just made some assumptions and pushed through to design for children with special needs. It’s a bit of a catch 22.
It’s a both and: caring for kids with chronic conditions but meeting their comprehensive needs as well.
We thought about guiding principles. There were six federal guidelines. They are kind of outcomes, so we added a whole lot of other things to that set. We added quality: safe, timely, family-centered, coordinated, comprehensive, culturally competent and so on. It needs to be responsive to needs of families. There needs to be continuous improvement that is based on patient information. The system needs to be evidence-based. There needs to be accessibility. There needs to be continuity across the life span and also focus on prevention. It needs to be comprehensive—the whole child in the context of the family or community.
The goal of the system is to allow all children to reach their maximum health potential.
We started with the environment. We are unlikely to have an environment of national health care for children, so the key environment is the state, not the nation. At the county level, we can’t achieve all of these guiding principles, so it needs to be a state system of care. Universal access to appropriate level of care needs to be assured. There are financial and workforce considerations. Availability of providers needs to be in place. Then we had a wish that all the other sectors were thinking about children in the same way—holistic. This would include the education system and the social service system.
Then we started to think about the strategies we might employ. Part of it would be social marketing. There needs to be public and political support. There has to be workforce development to cover shortages in doctors, etc. Quality and performance improvement would be one of the foundations on which the system would be built. There needs to the identification and development of leaders. There’s no one in the state right now who does this. We need to build an evidence base. And we need to build a community capacity.
That’s really as far as we got. We had difficulty separating strategy from structure. It was extremely difficult to think of this as an organizational chart. Is it a chart of services or is it a chart of providers or accountability organizations or is it all of these things? You can draw one for the United Kingdom, but we can’t draw one for children’s special health care needs in California.
We thought we needed regionalized specialty care and linkages between primary and specialty care. There needs to be family advocacy organizations and primary care networks. That’s about as far as we got.
Comments:
I think where I would differ is in the goal: all children develop their optimal health potential. We really don’t ever know what a maximal potential is. Optimal is easier to figure out in each case. Who would define maximum? Plus it changes over time.
There’s also a life course developmental model that needs to be included for all kids as one of your guiding principles.
In the strategy issues you’re missing a couple of things. One is the innovation side. How do you invent the stuff that doesn’t exist? Improvement alone won’t be enough. You need to build an innovation piece to the system. It needs to be a skunk works. It’s like the experimental ward at a Cincinnati hospital. Some of the innovations will be easier and others will be harder and require the acquisition of new resources. We have all been stuck in improvement for a long time, but you can only improve the quality of what you got, not of what you don’t have.
The other thing that you raised about special kids vs. all kids: You have five populations. A small percentage have weird, complex diseases. Another group has behavioral problems. Then there is the group that’s fairly healthy. So who we are designing for is important to understand.
In your team, please discuss the following questions, and note the major ideas and your answers on your white board.
Step 1
Our goal is to design an ideal system for children with special health care needs in California. Please identify the top 5 – 10 Guiding Principles that must be adhered to in the design of an ideal system.
A “guiding principle” is a concept, rule, policy, or key idea that significantly influences how people behave, the determination of their goals, what they aspire to, and the experiences that system users should expect when interacting with the system.
Please take about 20 minutes for this activity.
Step 2
In prior activities we have explored 4 different viewpoints. Now please identify 5 – 10 useful and effective system interventions or leverage points per viewpoint (listed below), which, if they were implemented in a major or minor way, would notably improve the performance of the system. Please explain in each case why it is a leverage point, how it improves the system, and who benefits from the change.
“Patient and Family” Viewpoint
“Health Care Provider” Viewpoint, eg, doctor, nurse, dietician
“Insurer or Payer” Viewpoint, eg, Blue Cross, Kaiser, CCS
“Family Support Services” Viewpoint, eg, case manager, social worker, care coordinator, family advocate, nurse practitioner
Which of these could have the most powerful viral or cascading effect through the system? (A cascading effect is one where a potentially small initial effort spreads through the system and expands its impact.)
Please take about 70 minutes for step 2.
Team 7 Report
We had the intervention in the existing system. As you can imagine this was a hot conversation.
We had a lot of guiding principles. Accountability rose as a theme as we went along. We talked about these different circumstances and accountability kept showing up.
- Streamlining showed up as well.
- Family partnership was one.
- The education and schools became a big thing. We're in a situation with schools that they have a mandate that they just can't meet.
- Access to early intervention - in the broadest sense. If you can get to these things earlier you might avoid the crisis.
- Use what works and fix what's broken.
- Try to get better 24/7 coordinated care.
- Family centered - cultural, linguistic, meeting families where they are.
- Universal access - from a payer standpoint.
- It has to be sustainable. It was hard for us to stay away from the idea of just getting more money.
Universal access is not the same as everyone having health insurance.
There needs to be some way the care that they are able to receive can be measured. You have all these private providers that don't provide the same level of care within their groups or the same as the government. We proposed they form a single pool or if they want they can connect at the level of the medical home.
We also said there needs to be local control. The system works when there is strong relationships. The system has to address all the local idiosyncrasies that exist. The more centralized it is the harder it will be to deal with the diversity that exists.
As a provider we have a lot of challenges dealing with the variability between counties. The county wants control but that leads to tremendous variability between counties. There is a big hand-off problem.
That applies to regional centers, mental health programs that are county based - even though they have the same mandate in theory.
They use resources in a way that creates differences. The result is the services provided are different.
There is weak state leadership of state CCS. They don't pay well. At the county level we run into people that aren't nice people.
We came up with some interventions.
For Family Support Services we had a concept to create a round table model. Instead of a family coming in and receiving one bit here and another bit there these services come together around the table. They already do some of this now in San Francisco and the idea is to shift this to a systemic practice.
There needs to be a statewide council to provide over site to CSHCN System.
We had some arguments about funding. Would you give up your funding now for a new funding source with a broader accountability? There is a challenge there - they are afraid of losing funding. That goes back to the shift to the block grant. There was a lot of fear that entities wouldn't keep their money. Now the block grant makes sense. The transition is a challenge.
From the insurer/payer we finally think we need to choose a coordinator - a roving coordinator. In this model some times its the family, sometimes CCS, sometimes PCP, sometimes specialty care.
Now the term coordinator is a misnomer. It's really about the money.
Maybe we get true coordination through certification?
We think we need a lot more transparency on the denial of services side of things. That's where a lot of inequity is coming from.
I would go beyond insurers and all payers would need to be transparent.
One thing we didn't talk about in the current system is the long list of CCSLs that date back to the 20s. They should be segmented off as a different group - that is something that could be done with the current system. What is a special needs child? Should they all be treated the same?
Training for families to be care coordinators. Is it about training them to choose an appropriate coordinator for themselves or about training them to be the coordinator? It's about them being the coordinator.
There are a fair number of parents that want to be the coordinator but there are also options out there if they don't want to do that.
There needs to be adequate funding for schools so they can deal with these young people now.
We've developed a school integration program to get children to the right setting they need. An organized school integration resource is something that is needed.
In your team, please discuss the following questions, and note the major ideas and your answers on your white board.
Step 1
Our goal is to design an ideal system for children with special health care needs in California for California. Please identify the top 5 – 10 Guiding Principles that must be adhered to in the design of an ideal system.
A “guiding principle” is a concept, rule, policy, or key idea that significantly influences how people behave, the determination of their goals, what they aspire to, and the experiences that system users should expect when interacting with the system.
Please take about 20 minutes for this activity.
Step 2
- We have spent a lot of time discussing the existing health care system for special needs children, including looking at what works and what doesn’t work.
Please make a list of the 25 aspects of the system that don’t work.
Which ones are the worst, in the sense that they have the most deleterious impact on children and families?
Please design a systemic fix for the 5 five worst aspects of the existing system. By “systemic fix” we mean a comprehensive and enduring solution.
Your solutions may therefore involve an intervention at any level.
Please depict your system using models and diagrams (and not just in bullet points).
Please take about 70 minutes for step 2.
Team 8 Report
This was the 25 barriers and problems and this is the model to address them.
Our guiding principles have a lot of emphasis on quality and how to define it.
One of the principles is family centered including where families are and how active they want to be in their care. The care coordination aspects of the medical home. Getting them into a data driven kind of thing.
Adequate funding is a huge thing. User friendly. Is it accessible and understandable to patients and families? Some notion of equity.
Then there is comprehensiveness and continuity. You can have a great center in the hospital but that doesn't necessarily carry over.
These are the primary problems. We then voted on the top five.
These are pretty straight forward. We did a lot on orienting and figuring out where they are. Sometimes it's not appropriate for families to be the primary coordinator. We talked about transparency as well.
We didn't address the lack of support for transition to adult care.
Other principles included:
- The lack of portability.
- Provider shortages.
- Lack of leadership at a state level. We'll get into that a little more.
- Inconsistent access and identification to functional medical homes.
The underlined items are the ones we focused on.
We started with the idea of creating consistency and a common level of care - the idea of a statewide program that sets standards and has quality data reporting and established these principles. All the funders would go through this mechanism.
They would in turn have what we called one stop care centers - whether physical or virtual - they have the responsibility for coordination, navigation, etc. This center would develop with the family and help the family figure out who the players are and how they manage that depending on the goal you are working toward and what the family needs.
They should act as a team and that team will look different and at different times different people will be the quarterback. That will change - it's got to move around.
The one stop care center is who the family thinks about calling. They will help with the payment issues and these guys would administer some kind of globalized budget for the family.
They have an ongoing relationship with the family. What is the ongoing relationship? They are constantly re-honing the care plan and they communicate with the medical home, work with the schools, create the transition, etc. The PCP may not be continuing to offer of care. The coordinator helps with the non-medical things but they can help with medical things as well. They know who the players are and they know who to call. It's like a switchboard operator.
They may delegate but they will help them figure out what to do. They have the ability to do more of the continuity; they also have the ability to have more of the language and cultural things.
The idea was that at some point there is no one that asks if every child has an advocate.
Did you talk about institutions or organizations that are kind of like that now? Would these be created from scratch?
There could be people that might have some additional skills added and become a one-stop shop.
There would be a statewide set of expectations and then a lot of these care centers distributed around the state.
A family resource center today has funding in very specific silos and no one has any funding that is broad enough to be a one stop care center. Some funding that is a little less specific needs to be created.
The global budget may or may not include their care costs. Many purchasers could say you are the social HMO and we'll give you one big budget and you figure it out.
There was a national medicare program called SCHMO that failed. This is kind of like that.
Accountability is to the state wide entity. It's transparent. They would do public reporting as well.
In another group we talked about the role of schools and expanding them into health care delivery.
Did you talk about who's in and who's out in terms of the kids? The whole thing about exceptionalism is a problem.
