Improving Care for Children with Complex Medical Needs

9:30 a.m. to 9:40 a.m.             Welcome and Introductions

• Sarah J. Dash, MPH, president and chief executive officer, Alliance for Health Policy (@allhealthpolicy)

• Mark Wietecha, M.S., MBA, president and chief executive officer, Children’s Hospital Association (@hospitals4kids)

9:40 a.m. – 10:20 a.m.             Panelist Opening Remarks

• Deidre Gifford, M.D., MPH, deputy center director, Center for Medicaid and CHIP Services, Centers for Medicare and Medicaid Services
• Stephen Groff, director, Division of Medicaid and Medical Assistance, Delaware Health and Social Services
• Karen Fratantoni, M.D., MPH, medical director, Complex Care Program, Children’s National Medical Center; assistant professor of Pediatrics, The George Washington University School of Medicine and Health
• Rylin Rodgers, director, Public Policy,Association of University Centers on Disabilities (@RylinAUCD)

10:20 a.m. – 11:00 a.m.                       Question and Answer Session

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The Alliance is grateful to Children’s Hospital Association for its support of this briefing.

Note: This is an unedited transcript. For direct quotes, please see video at http://allh.us/pDju

  SARAH DASH: I am Sarah Dash from the Alliance for Health Policy, and it’s my pleasure to welcome you here today to learn more about improving care for children with complex medical needs.  For those who aren’t familiar with the Alliance, we are a non-partisan organization and we’re dedicated to advancing knowledge and understanding of health policy issues. If you like Twitter, you can join the conversation today using the #allhealthlive, and if not, that’s totally fine too. I want to thank the Children’s Hospital Association for their partnership and support in keeping making this briefing possible. We are really excited, we have a fantastic panel.   So just quickly, by way of background, you know, advancements in medicine as we know are allowing children with medical complexity to live longer. And today there are approximately three million children with medically complex conditions in the United States, and we’ll be defining what that means in today’s briefing. And many of these children are covered by Medicaid. These children often require intensive services from multiple providers in a range of clinical and non-clinical settings. The volume of care that is required to support these kids poses a unique set of challenges to the healthcare provider’s cares, and family members who care for them. During this briefing, panelists will describe factors that impact the quality, affordability and accessibility of care for children with complex medical needs. So as I said, I want to thank the Children’s Hospital Association for making this briefing possible, and I want to invite Mark Wietecha, who is the President and CEO of the Children’s Hospital Association, to share some opening remarks. Thanks, Mark.   MARK WIETECHA:  Thanks, good morning everyone. Thank you for being here and having your presence and participation on this important topic. What we’d like to talk a little bit about today, are kids with medical complexity, and we’ve got very expert people on my left who can articulate a little bit more about this. But these are kids, as Sarah mentioned, which we think there’s a couple million in the Medicare program, and there’s several hundred thousand of them who would be among the most challenged. We think of kids with medical complexities having two or three concurrent, lifelong, chronic health problems. So these are things that aren’t necessarily cured, but increasingly are things we can treat or manage.   What I would like to do, is just to share with you a little story about one of these patients, and I think his picture is going to run across the screen. So in the summer time we’ve got several thousands families, many of whom have kids with medically complex conditions, come to D.C. and fundamentally make the rounds in Congress. And so one of the families, from Fort Worth, Texas, I had the privilege to go along with on their visits. Their son, Alex, who is a 14 year old, has a rare form of mitochondrial disease. And I won’t try to explain all the physiology of that, suffice to say he has trouble making energy, just staying alive. And as a result is on an unbelievable medication regime. He’s got three dozen or so meds that he needs to stay alive. And importantly, he has never eaten. He doesn’t eat. He can’t eat food. So he’s fed through a port, and on top of all of this, he appears, and mostly in a wheelchair to save energy and effort, made the rounds in Congress with us.  And we had an opportunity to listen and talk a little bit about his life. I thought I would share with you the thing that most stuck with me; one of the representatives asked him what it was that he would like to do when he got older. And he looked up and said, “You know, maybe meet somebody and get married, and have a family.” Little things. I think I was struck, when I get up most mornings, the little things in life I don’t think about. I kind of worry about getting over here, finding an Uber, making all my phone calls. And maybe sometimes for some of you guy too. For some of these kids, and there are hundreds of thousands of them, these little things are the magic of what they want to see in their future. It’s kind of their dreams. Simple stuff. And that’s really what this panel, this meeting this morning, is all about. Simple stuff, and how we can make some of that possible for some of these kids, and give them a shot at pieces of life that we all get a chance to experience.   So we are thrilled to have you here. Thanks for being here with all of us. And I’m going to turn things back over to Sarah. Our panel will get underway with their great insight, and we appreciate it, thanks.   SARAH DASH:   Thank so much, Mark. For those of you who are just joining us, we do have a couple seats up front, so don’t be shy. I’m really thrilled that you’re here. I’ve got one here and one here. Raise your hand if you’ve got a seat next to you. We’ll get started. Let me introduce our panel. You’re going to hear from four excellent speakers today, each of whom brings a different perspective to this discussion, and we are really grateful to have them shed some light on this critical topic.   So joining us today, we have Deidre Gifford, who is immediately to my left. She is the Deputy Director of the Center for Medicaid and CHP services within the Centers for Medicare and Medicaid Services, CMS. Dr. Gifford has held leadership positions related to the Medicaid programs at the state and federal level, and in both the public and private sectors. Notably, she served as Medicaid Director in the Rhode Island Executive Office of Health and Human Services. And prior to joining CMS, she served as the Director of State Policy and Programs at the National Association of Medicaid Directors, NAMD, where she lead the organization’s efforts with states, to support advanced value-based purchasing in Medicaid.   Next we have Stephen Groff, who is Director of the Delaware Division of Medicaid and Medical Assistance, which is the agency responsible for administering Delaware’s Medicaidship and State Pharmacy Assistance programs. Mr. Groff has over 30 years of experience with the Delaware Department of Health and Social Services, focusing on policy and budget and healthcare and public assistance programs. And he’s a graduate of the University of Virginia.   We will hear next from Dr. Karen Frantantoni; she is Medical Director of the Complex Care Program at Children’s National Medical Center, and an attending physician and medical educator at the Goldberg Center for Pediatric Community Health. She’s also an assistant professor of pediatrics at the George Washington University School of Medicine and Health. Dr. Frantantoni provides clinical care to children with complex medical conditions who require multispecialty care. The research interest is centered on transition of complex children and their families from hospitals to home.   Finally, we will hear from Rylin Rodgers, the Director of Public Policy at the Association of University Centers on Disabilities. The nations leading voice on disability. Before joining AUCD, Ms. Rodgers served as the training director, and family leadership coordinator for the Riley Child Development Center, Indiana’s LEND, and was a founding board member of Family Voices, Indiana, who both as a parent as a professional, Ms. Rodgers has extensive expertise on topics including special education regulations, public and private healthcare financing and family and professional partnerships.   So I’m going to really thank everyone for being here. You do have slides in your packets, you’ll be able to see them up here, and I’m also going to invite — if the panelists feel more comfortable giving your presentations from the podium, just so you can look, or we’ll advance your slides for you. With that, I will turn it over to Dr. Gifford.

1. DEIDRE GIFFORD: Good morning everyone. I’m Deidre Gifford from the Center for Medicaid and CHIP CMS. I’m really delighted to be here, to participate in this panel on this really important topic, and to set a little bit of the federal framework for how states and providers can think about including care for this important population.

As Sarah mentioned, many children with medical complexity are covered by the Medicaid part of a children medical insurance program. I’m going to take off my shoes. Is that better? So the Medicaid program is up to about 77 million enrollees total, including adults and children. But as you can see here, we are among the largest single insurers in the country. The Medicaid program alone covers 70 million individuals, and six million . We cover nearly half of all the births in the country, and over one third of all children in the United States are covered by Medicaid; and 21% of Medicare beneficiaries are also Medicaid members.   This slides shows you for children and families, how important the Medicaid program is in providing coverage. 38% of all children are covered by Medicaid and is obviously . We cover the vast majority of low income children in the country, and 49% of births and families. So the Medicaid program is certainly a critical component, addressing this issue of children with medical complex needs.   The CHIP program is for the most part, the benefits are aligned with the Medicaid program, particularly in those states where CHIP is an expansion of Medicaid, but states do have more flexibility when it comes to CHIP. If they set up a separate CHIP program, there may be some differences between the Medicaid and CHIP programs in terms of benefits .   So as we thought about this morning what might be useful for you all in sort of setting the table for this conversation, I thought it might be helpful to briefly walk through what some of the most relevant federal authorities are in Medicaid that states and providers might think about when talking about models of care for children with medical complexity. As I’m sure most of you know, but just to reiterate, in the Medicaid program, we are a partnership both financially and programmatically between the federal government and states. And unlike Medicare, CMS is not set — a defined set of benefits for every state. In order to be set in a defined set of eligibility criteria, we have a set of mandatory benefits and populations, but then the states go on to build on that set of mandatory benefits and populations and create a unique program. So it is not an exaggeration to say that we have a unique Medicaid program in every state, the District of Columbia, and the territories. And this is both a strength and a challenge, and I know that providers for children with complex medical needs have views on them. We thought we could talk about what are some of the sort of common authorities that are part of the Medicaid statute and regulation, that states can build on to address challenges.   So first of all, set health homes, which is in Section 1945, and health home providers are meant to coordinate all primary, acute, behavioral, and home community-based services to treat the whole person. So this is a benefit that states can elect, and you have a reference there if you’re interested in finding out more information. We know that children with complex medical needs, one of the primary challenges is robust care coordination. Having an individual and an advocate that can help the family and the child navigate them in often many different providers. Be an advocate and a navigator. And health homes are one way that states can choose to provide that benefit. Health homes can target either a condition or conditions, or they can target a designated set of providers. These are key features here of the health home that are found in the statute; coordination and integration, full person perspective, person-centered planning, multidisciplinary team approach, and they can be part of a geographic . Importantly, there is a requirement for states that are setting up a health home benefit themselves with the Center of . Meaning that it’s very important for the health homes to think about both the behavioral health needs and the physical health needs of . And importantly also, states can receive an enhanced of 90% or two years the health home, which is an incentive to start these homes.   As I providers to ask if the health home and the way that the health home is assigned, and it’s these three options of how a state can define the providers of the health home. States have discretion and flexibility in designating providers, but the health home payment for all of these enhanced services goes to the designated group provider of the health home. We have three states that have so far established health homes that are tailored specifically to meet the needs of children. These states also have health homes for adults with behavioral health conditions, and so far the three health homes for children have focused at least in part on behavioral health. Health home legislation have asked states to submit one health home that includes both adults and children, one state plan amendment for two separate, but the health home cannot be targeting children alone under the current statute. Conversely, children cannot be excluded from a health home under statuary laws.   So these are the three health homes that we have; one in New Jersey, Oklahoma and Rhode Island. Both New Jersey and Oklahoma target children with serious emotional disturbances and Rhode Island targets children with SED, and then also children with two or more chronic conditions. We have data on these health homes; data collection is part of the requirement in the state plan and we are beginning to start to see some results. I don’t have anything to pass on today in terms of a definitive changes in quality or access, or beneficiary experience based on health homes, as CMS is going to look at that data, and we should have that soon I’m sure. .   I also wanted to mention EPSDT, early periodic screening diagnostic and treatment. I had the foresight to write down what this acronym means. EPSDT is a really important part of the Medicaid program. It’s a mandatory benefit for most individuals under 21 in Medicaid. It’s not an eligibility option, or a program, and states are required to provide comprehensive services, and furnish all Medicaid coverable, appropriate and medically necessary services needed to correct and ameliorate health conditions based on certain federal guidelines. Although that may sound, to those of you who haven’t gotten quite familiar with it, as sort of dry, regulatory language, it’s an incredibly important piece of the Medicaid framework because it basically means that for any of these reasons: correcting or ameliorating conditions, Medicaid needs to supply the appropriate solutions.   I think I was asked to mention this concurrent hospice and curative care benefit for children; this is something that came through the ACA. In general, hospice benefits individual for a hospice benefit and a provider has indicated that the individual likely has six months or less to live, then curative services are no longer about individuals with some palliative care. In the ACA, section 2302, this prohibition on curative services for children was removed, and so that children in hospice can elect both palliative care .   I wanted to mention home and community-based services for children, which is covered under EPSDT and there are multiple that are state plans for kids, or other . They are to be provided services that ensure the child’s access to the larger community whenever possible. And if the state elects to do so, the state can use these services to the family setting whenever possible.   And so finally, I just wanted to mention a few — those are sort of some of the underlining Medicaid origins that often escapes the leverage. I would also like to mention a few demonstrations that are either underway, or will be underway soon through our Center for Medicare/Medicaid Innovation at CMS.  The first one is not the final, but I wanted to mention it, is that in both round one and round two of the CNMI Generation Awards, awardees were challenged to create to improve care by effectively sustain them with innovative funding. award was to focus on children and you’re going to hear about it from one of our participants in this program later in the panel. All of these awardees use multi-disciplinary teams to coordinate and manage care, and importantly, they use some of these existing Medicaid authorities that I just talked about. In other words, they need special administration authority and these are things that could be developed in partnership with the states and providers without any extra authority from the Medicaid program, or legislation.   There is also a learning collaborative of these awardees, which has been ongoing for a number of years, and I think the idea, when data start to become more publicly available, is to grow and spread these models to other Medicaid programs. So that’s the innovation awards for pediatrics. Also you may have seen a recent announcement from CNMI about integrating care for kids model, which we call . It’s a child-centered local service delivery and state payment model, aimed at reducing expenditures and improving quality of care for children covered by Medicaid and CHIP. So we think these demonstrations are going to be very important in bringing together different provider types, looking at the social aspect, in addition to the medical aspects for these children. The funding opportunity announcement has not been released yet; that will be released fairly soon. And we look forward to seeing what new models are previous award, and spreading those models in future years.   Finally, I just wanted to mention, Strong Start, which although is not a pediatric model, it’s a pregnancy care model. It’s really meant to improve outcomes for pregnant Medicare and CHIP beneficiaries and hopefully to result in fewer pre-term deliveries and often being a precursor to medical complexity. So we have a Strong Start model final evaluation, it should be available before too long, and there are some interesting findings about sites of care and pre-natal models that have lead to pre-term births. So that’s an important new finding coming out at CMS, but should be available shortly.   SARAH DASH:   Thank you so much, Dr. Gifford, and if I could ask maybe just a follow up question for you on the health home model? Is that a new option under the state plan or is that something that’s been around for a while?

1. DEIDRE GIFFORD: It’s an ACA provision.

SARAH DASH:   Great, thanks. And just for those who may not know, the difference between state plan and a waiver is that and easier process to get a model?

1. DEIDRE GIFFORD: Waiver authority can be exactly what it says, which is there is some part of the statute that needs to be waived in order to implement the model. We have lots of ways of doing that, and some waivers are less complicated than others. A state plan is sort of the basic tool of describing the Medicaid program, and the approval of a state plan is generally less complicated, and the amount of information, tracking, and monitoring that’s required is generally less complicated, although as I mentioned earlier, there is some requirement built in to the health home that requires some collection of data and according to CMS.

SARAH DASH:  Thank you.   STEPHEN GROFF:  Do I need to take my shoes off?  Good morning. I’m happy to be here. I want to thank you for the opportunity to come and speak with you today. I want to lead off by saying I do not consider myself by any stretch of the imagination to be a subject matter expert. But I would like to share with you some of the things that we are doing in Delaware right now to try to improve the systems of care for children with medical complexities.   In 2017, our budget bill included a directive to the Department of Health and Social Services to create a task force to develop a plan to address the needs of children with medical complexity in the state of Delaware. We were given almost an entire nine months in which to accomplish this. So as you can imagine, there was no problem there. But we did go ahead and we formed this group and we had meetings that were open to the public, and we had incredible support from our cabinet secretary and the administration and amazing collaboration from all of the stakeholders.  As you heard in my biography, I’ve been a bureaucrat for 31 years, and I have to say that this was the most collaborative, rewarding stakeholder process in which I have ever been engaged. We included our community partners; we included our payers; we included government agencies, the families, and community advocates. And while that can often be a challenge, what we found was that once we got past the initial defensiveness, once we got past the tendency to talk at one another, and instead talk to one another and to actually hear rather than just listen, that we began to have a real dialogue. One of the things that I think you’ll hear about a little bit later is Care Mapping. Each of our meetings began with a presentation from a parent in which they shared their care map with us. And I think this is among the most educational exercises that you can go through to actually begin to understand what we are trying to address, and what we are trying to achieve in supporting these families. And I really have to commend the parents who participated in our process for their willingness to do so. Their openness and contribution that they brought. Our committee didn’t get off the ground until November, and we had until May to develop a report. We basically tried to break down the process. The questions that guided our work of what do we want to achieve, what are the vision and the goals that drive our work? What barriers limit children’s medical complexities, ability to receive appropriate care? And what are some possible solutions?   So first off, we realized that we needed to clearly define and identify the population, because as we began to have discussions, we realized what children with medical complexity means to one of us, is not what it means to another one of us. So it was very important that we define who exactly we were going to address. We developed a pretty broad definition, but it’s aligned with what you’ll generally see in the literature. We were challenge, or what we were trying to do was balance between being very inclusive, but at the same time realizing that if we don’t have a very concrete definition, that is measurable, so to speak, that we are not going to be able to collection the data. We are not going to be able to find the problem. We are not going to be able to evaluate our success, or our lack of success. And something that is probably important to keep in mind when you take this initial step, is that you address defensiveness that might be present, even with something that seems as simple as defining a population. Because for the family members, this could be perceived as a way to down the road define eligibility for services. And I found it very important that we did that off the table. This is for understanding alone and helping us to address the issues that we identified. It is not a way for us to define eligibility categories or service qualifications.   We have four groups:  payers, access, models of care, and data. Payers represent coordination between Medicaid, private insurance, state agencies and any other payers of care, and something that came out quite quickly to us was the need for better coordination between primary and secondary payers, especially on the Medicaid program.  Quite a few of the families will have access to primary coverage, and the coordination goes along with access to services, and payment for services, can be quite challenging for those families. Access is the timely use of personal health services to achieve best health outcomes. This can be gaining entry into the system, getting access to sites of care where the services are actually provided, and finding providers who meet the needs of individuals and who patients can develop a relationship based on the usual communication. Models of care broadly defines the way health services are delivered. It past practice, care,  and services, and data is of course analysis of the data. So when it came to the payers, carries shared the redundant documentation as one of the most frustrating aspects of coordinating care for children with medical complexities. Medical necessity documentation is required for all of these also:  Appeals and fair hearings, carrier expressed that the appeal process is very lengthy, often requires that they take time off from work, and away from other duties. And that a fair hearing process can be very intimidating. This came out more than once, that is can be a very adversarial process, almost like a court of law in which the parent felt like they were on trial and defending the very fact that they had requested services that their child needed.   I already mentioned coordination between payers. Access, provider capacity — and I don’t think this is going to be a shock to anybody, but it’s almost always a challenge for providing some of the specialized services that are absolutely essential for these children. Also, primary care services. And the need for primary care providers to work in consultation with specialty providers, and actually help families manage and navigate the care for their children. Specialists do the complex needs of children. With medical complexity, they often require multiple specialty services, despite the fact that Delaware is an extremely small state, we actually do have three counties, and two lower counties and , and specialty providers are not readily available, which require parents to travel to the northern part of the state, and/or out of state and this can be a challenge. The same goes for out-of-network providers. There are certain types of services that quite frankly just aren’t available in a state the size of Delaware, because their population doesn’t support it. And so parents need to travel out of state in getting those types of authorizations and/or transportation support, and be a challenge.   Therapies. Getting therapies — occupational, physical, because it is most likely that these need to be provided in a community based setting and/or the home, and that could be a challenge.   And in labs, these are things that we might take for granted, but quite often there will be a need for tests for services that are considered rare, and that can be a challenge in getting prior authorization and approving for those services.   What came out probably most importantly was nursing and other support services to actually support the families in the home. While we might be able to authorize and approve those services, that is far different than actually having access to these services, if the workforce doesn’t support it, or if you’re in an area geographically where it is difficult for the workers to come to your home. And so we heard quite often about missed shifts, and the need for the family to actually provide the care that we have authorized they be provided.   Transportation, especially for individuals that cannot ride in vehicle if they are not ambulatory. Just as a very simple example, one of the things that we were very quickly able to address, was a parent who had fortunately an accessible van. Of course we did not support her financially in making that happen, but we but not providing even mildly support for her to use that van to transport her child to and from appointments. Even though she would be eligible for our non-emergency transportation service, which we would take a wheelchair vehicle out of service for another member, and cost more money. So we quickly rectified that, that we can at least provide some support.   Then Pharmacy seems to be quite challenging, not only because of — and durable medical . Because of the specialized needs, the fact that what people are requesting quite often don’t fit into the standard protocols of what our payers might be using when making prior authorization decisions, And some of the unique pharmacy needs that might requiring compounding, I got a real education in the difference between a solution and suspension, and how that can impact the ability to actually administer a medication. So those are very quickly some of the barriers that we have.   Models of care, I think that what I would like to say about this, is when we were humbly beginning our work around models of care, it is quite challenging. We do know that what we need to address is patient and family centered care. We need to put the family and the caregivers at the center of this process, and the decision-making, and we need to deal better with care coordination. I think something that has struck me on more than one occasion was, we are almost overloading some of these families with care coordinators. And so the family then has to take on the role of being the super care coordinator, to coordinate the care coordinators. And there must be a better way of doing this for people.   And then transitioning to the adult system of care. We didn’t really get a chance to address this yet, but it’s extremely important. I think we heard a little bit about that. You need to take into account, what are these children’s desires and wants as adults? Everybody is going to be slightly different, but this is not something that we wait until age 18 to begin to address. We need to help prepare them to be successful in whatever path they choose, and I think that we’re encountering more frequently in Delaware, is how do we support some of our medically complex young adults as they go off to college? And they are in a completely different setting. And it has presented challenges, but also great rewards as we see these individuals succeed.   The work group, I’m only going to say that they had the most challenges involved, because for any of you that are familiar with Medicaid data, it has many, many, many, many challenges, so we weren’t even able to really get basic demographics in this short period of time, but we were able to define the parameters that we want to cut data on, and we will be doing that as we move forward.   So let me just finish up with recommendations, and I’m sorry if I’m taking more than my allotted time. Some of the recommendations: first and foremost, we recognized that we could not do an adequate job in the timeframe that was allotted. So the very first thing that we all agreed on, was that this had to be an ongoing effort, and in fact, we have created a permanent advisory committee for children with medical complexity that had its first meeting yesterday; we are chartering the group, we are developing bylaws and the first thing that we are going to do is take our initial plan, which quite frankly is more narrative than plan, and develop an actual work plan, prioritizing what we want to do and how — the timeline in which we wanted to achieve that. Recommendation: Be clear in contracts about the role of managed care organizations in identifying and providing services to children with medical complexities. Did I skip? Oh, I did. Perform a comprehensive data analysis as it relates to children with medical complexities. So as I said, we are going to be analyzing our data. There are some groupers that seem to promising for helping us to actually identify these children and that is our next