Developing an Ideal System of Health Care for Children with Special Needs

a project of the Lucille Packard Foundation for Children's Health

Viewpoints in the Existing System

Good morning everyone. Nice to see you all.

We have a little time to make up because of the speech yesterday. We're going to do a different style report out to share the work. It's called a shift and share. One person will stay and share the work you did in that group. The rest of you will go to another group and here what they did. The group that visits can give feedback on what they hear. Where are the places to intervene and what are the leverage points?

Where are the opportunities? Where are the most important communications?

We'll take up on those themes in the next round of work.

One or two people will present. The rest of you can visit another group. Two rounds of 15 minutes. After we do those two rounds we'll reconvene in here.

Assignment Step 1

As we all know, a “system” consists of  “parts,” and as the parts interact, the system achieves “outcomes” or “results.”

The purpose of this activity is to explore the system and its interactions by examining four specific viewpoints in greater detail.

Teams 1 and 5:  “Patient and Family” Viewpoint

Teams 2 and 6:  “Health Care Provider” Viewpoint, eg, doctor, nurse, dietician

Teams 3 and 7:  “Insurer or Payer” Viewpoint, eg, Blue Cross, Kaiser, CCS

Teams 4 and 8:  “Family Support Services” Viewpoint, eg, case manager, social worker, care coordinator, family advocate, nurse practitioner

Your assignment is to show the system in detail, specifically from your team’s perspective: Draw a circle in the center of your diagram that represents you, and then show the other elements of the system that are not you.  Also show:

In addition, please tell us:

Again, please show your work in a diagram or model (as opposed to a list). You have 60 minutes for this activity. You will share your work with other teams when you’re finished.

 

Short cuts (jump to the team work and the conversation that followed):
Team 1
| Team 2 | Team 3 | Team 4 | Team 5 | Team 6 | Team 7 | Team 8

 

Team 1: Parent and Family

Louis Girling, Johnna Anderson, Julie Beckett, David Bergman, Gary Waymire

Our perspective was patient/family. We cannot make a single bubble for “providers” – there are lots of different providers, but they don’t even talk to each other. This is the same on the payer side as well – private insurance, public assistance, etc. We didn’t even get to family support services (family voices, churches, resource centers, advocacy groups, legal entities, etc.), but that is disjointed as well. Let’s add a different bubble for “community” – neighbors, extended family, etc. This group tends to provide a fair amount of ongoing patient support and maintenance. Providers tend not to address the extended family, and providers are limited by HIIPA as well. We added school as a separate bubble – it’s an important venue, but we didn’t add any details to it.

This entire system is widely diffused. For kids like these, this system is an order of magnitude more complex than for a kid with asthma. The system as a whole never gets a view of the whole case for a child, never develops a goal, and can never develop a comprehensive plan. It is very easy for families to get overwhelmed. This is a full time job for someone in the family.

We first jumped to the Medical Home model. It sounds nice, but it doesn’t quite work in this model. There are payment issues, and it’s not just the physician. Medical Home is focused on only the medical side of the picture. Some people are now calling it the “Health Home” to include some of the larger issues.

So we’re stuck. This is not just a PCP/Medical Home thing. It is not practical. A PCP would be overwhelmed with just four of these patients.

If it’s not the PCP-based model, then what is it? It cannot be physician-based – it must include a whole range of care providers.

Perhaps we should start with the plan – make the plan the centerpiece and the focus of communication. Every one of the interactions in this system can go off on wide tangents. The plan helps every conversation focus on the goal and the task at hand. The action plan needs to be very detailed, with measurable goals, and accountabilities for everyone in the system. The newest name for this kind of plan is a bio-psycho-social plan, but that’s a mouthful.

Exceptional Parents and The Charlie Mitchell center are doing this already – there are models out there. PATH (Planning Alternative Tomorrows with Hope) is a template for a 2-3 hour facilitated planning process. Some volunteer groups train facilitators how to lead a group of supporters to develop a big vision and a concrete plan.

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Team 2: Health Care Provider

Tom Klitzner, Gene Lewit, Maureen E. O’Donnell, Liz Pavlov, Kathryn Smith, Eileen Walsh

Our group focused on Providers. We looked at the relationships with families, insurance companies and other services. Families bring providers information, preferences, resources and feedback. Providers deliver health care, diagnosis, education and guidance to the families.

From the insurance companies, providers get money, patients, standards and opportunities for quality improvement. Providers provide insurance companies with feedback and information about services provided.

We said “Family Support Services” included everything non-medical. Physicians in the 1950s provided a lot of these services, but now these services are mostly handled by other organizations. This allows physicians to focus on medicine. Family Support Services provide providers with information, respite, referrals and access to a team. Providers provide FSS with information, referrals, education and collocation space.

[In another group, we identified a need for someone to take charge of the child’s care. Maybe this is the PCP. Maybe this is the specialty group.]

We would not draw the model this way. We thought that this was the “existing model”.

What factors contribute to quality in the system? Teamwork and collaboration needs to become more central. Political will and climate is critical, but we don’t have a lot of influence on that. Standards are very important, and we have pretty good standards in place – we need to expand their use and application to the entire system of care. One of the big missing pieces for many children today is the medical home – we need this component to coordinate services, but we also need all of the other services to function well. We need to increase communication and care coordination among all care providers and the families. This involves everyone in the system learning new approaches of working together. One model is a “virtual care coordinator” – a single resource like a regional nurse that is the first point of contact for everyone treating the child. This resource might be located in a specialty clinic, or it might be a resource shared among a number of organizations.

There are other important levers in the system. There are not enough funds to pay for these models. We need to increase the number of providers. We need funds to pay for a smooth transition to a new model as well. These funds don’t exist today.

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Team 3: Insurer or Payer

Christy Bethell, Meg Comeau, Stephen Harris, Jack Komejan, Jacob Lesner-Buxton, Janice Fitzgerald Milligan

Patient and Family, Providers and Family Supports are all interacting with the Payers in the center. Our inputs appear in blue and the outputs appear in green. There are many types of Payers and the interactions and services will vary.

Patients and families provide money, requests and feedback to Payers. In return, Payers provide contact obligation, disease management, wellness education, information to make informed choices and access to care. We wrapped this up into case management.

Family Supports includes care coordinators, case managers and other support systems. They serve as the “conductors to care” and can make the requests to Payers that move the process forward and ethical guidance. These people know a lot about the payer network and are often the in-between that connects patients with the Payer. Family Supports receive payment for care and case management from the Payer.

Providers receive payment, referrals, contracts and limitations from Payers. Providers give authorization requisitions, appeals, cares coordination back to the Payers. In some cases, free care is also given to the Payer. In between the relationship is the role of “the fall guy” in those cases where a service is requested, but not approved.

There are a number of elements that impact quality including market share, public relations and profit.

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Team 4: Family Support Services

Anand Chabra, Alexandria Combs, Brenda Kaplan, Merle McPherson, Barbara Frankel Siegel, Laurie Soman

We added schools and community to the other entities interacting along with Providers, Insurers and Patient/Family.

Insures direct the care and authorize what can occur. They provide notices of action and process for care. The case manager is providing constant updates on the patients to the insurer.

Providers also receive a lot of information from case managers as to what is going on with the individual. The provider communicates concerns, medications updates along with many pieces of information related to needs.

In general, the schools don’t do a lot of communication. But they will provide IEPs with case managers when the request is initiated.

The patient/family is communicating the need to the case manager. This includes family situations, social needs, financial status in addition to medical needs. The case manager is the interface to many of the other entities and informs the family of options and processes to meet their needs. They will also coordinate the other entities to prevent crisis where possible.

The issues that we talked about include communication as a priority. Case management is all about communication and it is critical that they be effective at connecting dots and sharing updates. It is also important that a reasonable case load be maintained for case managers.

How is it that a family ends up with multiple case managers? Sometimes an insurance company will assign one, the provider facility will assign one, and a support organization will assign one. There is so much complexity in the system that it is feasible that as many as six case managers could be assigned to a single patient. It is possible that multiple case workers will disagree on care, fees, coverage, etc. or where they may be role conflict.

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Team 5: Patient and Family

David Alexander, Linda Davis-Alldritt, Juno Duenas, Charles Homer, Paul Newacheck, Edward L. Schor

We are the patient/family centered group. We started with the payor, the health care provider and family support services as big nodes and decided to break them down into other groups. For example, we added schools, hospital, primary care, specialty care, mental health, disease specific groups, transportation, etc.

The family provides coordination of services because no one else does it. They also provide information to all of the other groups. The relationships between patient and providers are elastic depending on the situation. They may be close to the provider or to a community-based organization or an employer.

There are a number of groups that provide outreach to families like schools. The payor controls access, whereas the provider should be contributing to some of these decisions.

The connections between the different players are shown with dashed lines because they are all intermittently connected.

The family also asks and advocates for services to a lot of the different stakeholders on the circle. Also, the provider asks compliance of the family and the patient and this affects quality of care as well—depending on whether the family/patient decides to comply or not. Schools ask for compliance as well, but the family doesn’t necessarily have to give compliance to any of these entities.

There’s an interaction between the payor and the family with regard to providing statements and billing. The family can challenge it or pay it—in either case it’s a two way street.

Families have to sometimes fight payors to get services authorized.

A lot depends on the family’s ability to understand the system and interact with it. And they have to build relationships in all of these systems over and over as people change their jobs and the agencies change their structures.

We could also intervene to improve quality by better cultural understanding and linguistic skills for the family. They also need to develop skills to become comfortable in negotiations that happen all the time.

There may also be an access between the patient, the employer and the payor. Sometimes to get the payor’s services they may have to go to the employer and get them to demand the right services authorized from the payor. There’s also the issue of the family being able to keep their jobs and get medical paid leave, etc. (Family Medical Leave Act FMLA).

Family support structure really helps determine quality—extended family, friends, community, etc. Also peer support from families who are in the same situation is important, and this network can be formed through family resource centers.

The family needs help navigating the system from a neutral party that’s not a part of any component of the system. This is also community care coordination.

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Team 6: Health Care Provider

JoAnna Caywood, Sophia Chang, Tawara D. Goode, Neal Halfon, Fernando S. Mendoza, Kevin D. Vu

We had the provider perspective. That’s where it started, with one circle in the middle and then it evolved. We identified a number of categories: family, payor, family support services and patient. We divided the patient from the family: especially when looking at youth who have some independence from their family. We also added the payor and the family support services.

Outputs and inputs between patient and provider: there needs to be feedback on quality and effectiveness of care. This doesn’t always happen and can be improved. This included knowing the updated health status.

Then we looked at what the provider generates across a whole range of referral services. This includes mental health services, which we haven’t talked much about here so far.

Q: Is there an assumption in this about who and what the provider is? You had sub-specialists separated from the provider. A: We felt that was another output from the provider just in the sense of a referral. We didn’t consider the sub-specialist to be the core provider and so created a separate category.

Doesn’t the provider also give a bill to the family? There’s a financial loop there that can help in reconciling the statement from the payor.

Sometimes the provider sends children to adult specialists as opposed to pediatric specialists, which is an important distinction. There needs to be a feedback loop that supports understanding the quality of care and the ultimate status of health after the provision of care and the sharing of that information across all of the people involved in the delivery of care.

We listed five factors affecting the quality of outcomes.

We placed community-based services and supports in a dotted line from the provider and separately from family support services. This connection sometimes comes from the provider. But there are a range of people who may connect the family to additional or ancillary services. There are community-based services and supports like schools, public health, recreation activities, legal services and immigrant/refugee advocacy organizations.

The payor can authorize and specify not only the payment but also the provider and agencies. This has an impact on quality of care as well.

Initially we didn’t bring up shared decision making but later on we pushed for it to be in there because there’s a partnership model among providers, the family, patient and other support services that affects quality. The quality of the communication in and across the system is also very important. There’s shared decision making at many different places in the system, not only between patient and provider.

Where can we leverage this system? We talked about shared decision making and coordination among the care team and payor as both being leverage points. Another place is at the authorization level—bundled or pre-authorization from the payor and in dialog with the provider and the family.

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Team 7: Insurer or Payer

Marjorie Fujiki, Don Mordecai, Stuart Siegel, Maya Altman, Karen Wayman, Katherine Zuckerman

From the perspective of the insurer things are very complex. This model has several domains. Up here are the payers. There is the oversight, the people providing services, etc.

The government is a payer, employers are payers. The green arrows are where the money goes. The government also oversees the insurers with regulation and they receive data from the insurers.

The insurer contracts with providers to provide services. Health care professionals, hospitals, ancillary services like labs, etc.

What comes back is claims and data. These people in turn provide health care to the patients. Patients provide direct feedback to the insurer.

There is also case management that occurs through many of these links.

One thing that jumps out at me that is not on here is a regulatory relationship between insurer and healthcare. The insurer controls how much care happens. We had care authorization on here somewhere. They authorize services and then care happens.

We talked about the factors effecting quality. One of the big ones is care coordination for members and also working with primary care providers to coordinate care. Accountability is important. We talked about the methods for payment. Pay for performance and incentive type things are part of that.

The time it takes for providers to deal with insurer related issues is an impact on quality.

The cost of care and the quality of data are related. The services that were provided - that data helps to determine outcomes and standards of quality.

Where to intervene?

One place is getting quality measurement data. Insurers want high quality cost effective care. When you look at a systems perspective you want to measure quality consistently - and you want to measure across organizations.

Standard processes are important. Getting standardized processes between insurers would help - if forms are standardized and enrollment is similar that would be better.

Centralizing financial authorization. CCS is a payer and an authorizing entity but some of that is split between different entities in other cases.

There is a lot of crazy case management going in all directions. Hospitals provide case management, insurers provide case management, and other people do to.

The role of the insurer in care delivery is important. You need to have an adequate volume of cases so you can get good at coordinating. You have a small population of cases being spread around a large universe of plans. How does one plan get good at managing this?

When they do case management they are really looking to manage the dollars anyway.

What is the incentive system for the insurer to provide quality care? The incentives aren't set up right now for them to provide quality care.

It's hard to talk about a generic insurance company.

Your clients are turning over every year and you have tremendous cost pressures. The question being asked now is, 'are the incentives all wrong for the insurer to be a quality case manager?'

The insurer has case management as part of their charge. Would you have a payer being in charge of quality? Insurers aren't really the payer. Employers are the payer.

What if the payment is tied to quality? Risk adjustment?

Measuring quality for our population is really difficult. You want to tie the payment to quality somehow.

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Team 8: Family Support Services

Michael Fraser, Thad Padua, Linda Roundtree, Bonnie Strickland, Paul Wise

Here's our model. We realized early on that we had to figure out what family support is. We decided it is care coordination and family advocacy. We drew the line at direct health care interventions. Therapy and things like that are somewhere else in the system.

Regardless of how we defined it there is a different relationship between family support and the family and patient. We wanted to send the message that it's connected to the family and patient but it's different. So in our model we placed the family on the line here.

The supporter is at the center. Family services agency - but not necessarily the social worker. We defined it by function.

We represented the other components out here - payers, providers (the medical home is the primary specialist coordinated with sub-specialty and community services).

The school isn't represented by any of these very well. There are also some public agency functions that aren't well represented - like mental health.

The other group is foster care and juvenile justice. They aren't represented well either. Regional centers are part of HHS.

CCS and regional centers are connected with the health care system. Schools and foster care are not.

We felt there were some other pieces we needed to think about - like the internet and getting information. The religious home isn't well represented either.

If you are middle class your expectations of the schools are one thing but those expectations may be different if you are poor.

We need to understand where they have comes from and what their expectations are of the family and the community.

Family support groups also have a connection with national organizations and that has an impact as well - on resources and/or information on how to give services.

We didn't spend a lot of time on information because its referrals and information. These blue and brown lines represent that. The number of entities that might be wanting to communicate makes a very challenging coordination issue.

Is the family support agency helping the family become their own coordination center? We didn't articulate that completely - but the red lines are the places we think we can impact the most.

We, as family support, feel we can have the biggest impact by empowering families to be their own care coordinators and leaders in advocacy. This would be the main leverage point.

We could influence the medical home concept and helping families be partners with sub-specialists, etc.

We also thought we could impact the payer. There should be a relationship with the payer and helping a family access the benefits they are entitled to but they don't know all the systems they are supposed to work in and they don't have the same level of leverage.

Because of the proliferation of family support they aren't all good and they may not match the family well. How do we vet support groups? This is hugely complex to make sure the family gets to the right kind of support group.

There is a liability here.

Are you a family support professional or a volunteer? If you are a professional there is training, outcomes, accountability, etc. If you have a professional family support system it means something different.

Is it lay support - parents helping parents - or parents acting as the coordinator - or a professional?

The way it's solvable you have to shift the responsibility to the parent and let them know it might not be a good fit for them.

I've heard medical home for years and I'm vague on it. I thought it was about PCP (primary care provider). It's comprehensive care. It might expand and contract based on your medical needs. It includes ongoing care. If you have a doctor all the time and you aren't getting the information and care you need than you don't have one - or it's a lousy medical home.

This was the list that impacted quality. Communications, adequate funding, coordination and continuity of care, training, knowledge, expertise; family advocacy. The expectations of the family - they not might even know it's there.

The fit of the care coordination and the level of the care coordinator.

There are different levels of coordinators - family, volunteer, and professional.

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