Improving Care for Children with Complex Medical Needs

Public Briefing

Advancements in medicine are allowing children with complex medical needs to live longer. Today, there are approximately 3 million children living with medically complex conditions in the United States–many of whom 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 required to support this population poses a unique set of challenges to the health care providers, payers, and family members who care for them. During this briefing, panelists described factors that impact the quality, affordability, and accessibility of care for children with complex medical needs.


  • 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)

The Alliance would like to thank the Children’s Hospital Association for making this event possible. 


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


Join the conversation at #AllHealthLive

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


Event Resources

All materials can be found in full at the links provided.


Key Resources (listed chronologically, beginning with the most recent)

“CARE Award: 2018 Preliminary Results – A National Three-Year Project to Transform Care Delivery and Payment for Children with Medical Complexity.” Children’s Health Association. September 4, 2018. Available at

“Families of Children with Medical Complexity: A View from the Front Lines.” Allshouse, C., Comeau, M., Rodgers, R., Wells, N. American Academy of Pediatrics. November 1, 2017. Available at

Additional Resources (listed chronologically, beginning with the most recent)

“How Medicaid Protects Children with Special Health Care Needs.” Bonacini, C., Mahan, FamiliesUSA. June 2018. Available at

“Delaware’s Plan for Managing the Health Care Needs of Children with Medical Complexity.” Delaware Health and Social Services Division of Medicaid and Medical Assistance. May 15, 2018. Available at

“Medicaid’s Unnecessary Barriers Delay Care for Children with Complex Needs.” Manetto, N., Greenberg, J., Gaulin, M. Stat News. May 1, 2018. Available at

“Care Coordination for Children With Medical Complexity: Whose Care Is It, Anyway?” Kuo, D., McAllister, J., Rossignol, L., Turchi, R., Stille, C. Pediatrics. March 2018. Available at

“Medicaid’s Role for Children with Special Health Care Needs: A Look at Eligibility, Services, and Spending.” Musumeci, M., Foutz, J. Kaiser Family Foundation. February 22, 2018. Available at

“How Do Medicaid/CHIP Children with Special Health Care Needs Differ from Those with Private Insurance?” Musumeci, M., Foutz, J. Kaiser Family Foundation. February 22, 2018. Available at

“The Medicaid Cap: “Carving Out” Medically Complex Kids Won’t Protect Them.” Schneider, A. Georgetown University Health Policy Institute Center for Children and Families. June 21, 2017. Available at

“Coordinating Medicaid Long-Term Services and Supports for Children with Medical Complexity.” Anthem. May 2017. Available at

“The Case for the Use of Nurse Practitioners in the Care of Children with Medical Complexity.” Samuels, C., Harris, T., Gonzales, T., Mosquera, R. A. Children. February 21, 2017. Available at

“Home Care for Children with Multiple Complex Chronic Conditions at the End of Life: The Choice of Hospice Versus Home Health.” Lindley, L., Mixer, S., & Mack, J. Home Health Care Services Quarterly. July 6, 2016. Available at

“Care Coordination for Children with Complex Special Health Care Needs: The Value of the Advanced Practice Nurse’s Enhanced Scope of Knowledge and Practice.” Looman, W. S., Presler, E., Erickson, M. M., Garwick, A. E., Cady, R. G., Kelly, A. M., Finkelstein, S. M. Journal of Pediatric Health Care: Official Publication of National Association of Pediatric Nurse Associates & Practitioners. July/August 2013. Available at

“Defining Quality Outcomes for Complex-Care Patients Transitioning across the Continuum Using a Structured Panel Pro Access.” Jeffs, L., Law, M., Straus, S., Cardoso, R., Lyons, R., Bell, C. BMJ Quality & Safety. August 30, 2012. Available at

“State Health Care Financing Strategies for Children with Intellectual and Developmental Disabilities. Intellectual and Developmental Disabilities.” Bachman S., Comeau, M., Tobias, C., Allen, D., Epstein, S., Jantz, K., Honberg L. Intellectual and Developmental Disabilities. June 2012. Available at







Karen Fratantoni


Children’s National Medical Center, Medical Director of the Complex Care Program


Deidre Gifford


Center for Medicaid and CHIP Services, Deputy Center Director


Stephen Groff


Delaware Health and Social Services, Director of Division of Medicaid and Medical Assistance


Rylin Rodgers Association of University Centers on Disabilities, Director of Public Policy




David Bergman Lucile Packard Children’s Hospital, Co-Medical Director of the Complex Primary Care Clinic and CARE Award Medical Director


Meg Comeau Boston University School of Social Work, Senior Project Director and Principal Investigator of the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity


Patricia Johnston


National Association for Children’s Behavioral Health, Executive Director


Dee Mahan Families USA, Director of Medicaid Initiatives


R. Shawn Martin American Academy of Family Physicians, Senior Vice President of Advocacy, Practice Advancement, and Policy


Aimee Ossman Children’s Hospital Association, Vice President of Policy Analysis and Implementation


Kelly Whitener Georgetown University McCourt School of Public Policy’s Center for Children and Families, Associate Professor of the Practice


Amy Wimpey Knight Children’s Hospital Association, Chief Operating Officer



Government and Government-Related Groups

Laura Kavanagh Health Resources and Services Administration, Acting Associate Administrator of the Maternal and Child Health Bureau


Matt Salo National Association of Medicaid Directors, Executive Director


Anne Schwartz Medicaid and CHIP Payment and Access Commission, Executive Director


Karen VanLandeghem National Academy for State Health Policy, Senior Program Director



Jay Berry


Boston Children’s Hospital, Complex Care Service;

Harvard Medical School, Professor

Kisha Davis Casey Health Institute, Family Physician;
CFAR, Consultant
Dawn Garzon Maaks


National Association of Pediatric Nurse Practitioners, President


Jeffrey L. Goldhagen University of Florida College of Medicine-Jacksonville, Chief of the Division of Community and Societal Pediatrics


Dennis Z. Kuo University at Buffalo, Associate Professor of Pediatrics;
UBMD Pediatrics Oishei Children’s Hospital, Division Chief of General Pediatrics
David Rubin Children’s Hospital of Philadelphia, Director of PolicyLab


Edward Schor


Lucile Packard Foundation for Children’s Health, Senior Vice President of Programs and Partnerships




Carolyn Allshouse Family Voices of Minnesota, Executive Director


Cara Coleman Family Voices, Project Manager


Janis Guerney Family Voices, Director of Public Policy


Rebecca Kirch National Patient Advocate Foundation, Executive Vice President of Healthcare Quality and Value


Nora Wells Family Voices, Executive Director




Note: This is an unedited transcript. For direct quotes, please see video at


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, [unintelligible] 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 [unintelligible]. 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 [inaudible]. 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 [inaudible].


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 [inaudible]. Importantly, there is a requirement for states that are setting up a health home benefit themselves with the Center of [inaudible]. Meaning that it’s very important for the health homes to think about both the behavioral health needs and the physical health needs of [inaudible]. And importantly also, states can receive an enhanced [inaudible] of 90% or two years [inaudible] the health home, which is an incentive to start these homes.


As I [inaudible] providers to ask if the [inaudible] 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 [inaudible] 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 [inaudible] 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 [inaudible].


I wanted to mention home and community-based services for children, which is covered under EPSDT and there are multiple [inaudible] that are state plans for kids, or other [inaudible]. They are to be provided [inaudible] 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 [inaudible] 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 [inaudible] to improve care by effectively sustain them with innovative funding. [inaudible] award was to focus on children [inaudible] 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 [inaudible]. 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 [inaudible] 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 [inaudible] model?


  1. DEIDRE GIFFORD: [inaudible] 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 [unintelligible] 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 [unintelligible], 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 [unintelligible] 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 [inaudible]. 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 [unintelligible] 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 step with data.


Strengthening systems of care with medical complexity. Review and revise as appropriate our polices and processes. We have what we call the Children’s Community Alternative Disability Program in Delaware. I’m looking to change that name, because it’s a mouthful. It’s basically [inaudible] program. And so we are especially looking at our eligibility and redetermination of medical and eligibility processes, to try to make it more streamlined for these families and not to insult them by sending them repetitive paperwork frequently to document out of necessity.


Be clear in our contracts about the role the managed care organizations. When working with our NCOs to develop a mechanism to identify and flag all children with medical complexity. The reason that we want to do that, is we want to have separate care coordination staff, and procedures in place so that families don’t get caught up in the rigamarole of prior authorization using standard protocols through three or four levels of prior authorization care coordination, before they get to somebody that actually is familiar with their child’s needs and can address them. Develop and strengthen existing resources for caregivers, providers and the large community. We are looking to develop a handbook and/or toolbox type materials for parents and also to facilitate peer to peer. Another thing we’re learning is quite often the families get their best information from other families, unfortunately not from our providers, or our managed care organization. And strengthen the network of health providers. Right now what we want to do is do an initial payment collection to see what exactly are our gaps in care, because I’m one of those people, although we don’t seem to do it a lot, I like to define a problem before I work on the solution. Quite often in government we do the reverse, we identify a solution and then hope it’s going to work.


So with that, I apologize if I took too much time. Thank you.



SARAH DASH:   Thank you so much, and thank you for thorough example of what it takes at the state level. We are next going to hear from Dr. Karen Fratantoni.


  1. KAREN FRATANTONI: I’m Karen Fratantoni, I’m a pediatrician at Children’s National, and I lead our clinical program for children with medical complexities. So in these next few minutes, I hope to explain a little bit more about children with medical complexity in general, and tell you a little bit about my experience as a provider and a pediatrician, and then hope to explain a little bit from my perspective what I think the family’s experience is, and kind of coordinating care for their children in the midst of our healthcare system, which has been described so nicely as being quite complex for these families, and for providers actually too.


So first I want to give you a little bit of a perspective of kind of what we’ve been talking about, and the moderator, as well as my previous panelists have certainly described this really nicely, but I like this visual, because it kind of just — it’s just out there, right? So we have the larger pediatric population, and then within that, we can actually very clearly define children with special healthcare needs. Our acronym — no child is an acronym, but our acronym, because it’s a long, wordy phrase, is CSHDN. And so essentially those are children who have, or are at risk for a chronic physical, developmental, behavioral, or emotional condition, and requires service above and beyond that of child generally. So that ends up being somewhere from about 13 and a half, to about 24 and a half percent of the population. And actually the child health survey just released their data, for those of you that are antsy to look at that, it came out a couple of days ago. I’ve yet to pour over it, but I think it was Hawaii who actually had the lowest, and Kentucky had the highest, at the 24.4%, I think. So we are talking about millions of children. About 13.8 million children who are defined as a child with special healthcare needs. So within that, there is the smaller group of individuals, very heterogenous is the term we use in medicine, meaning not at all alike, right? Children with medical complexity. So these are kids who are just more complex. And I think others have described this pretty nicely, and it’s a small proportion of the population. Estimates are anywhere from a half of a percent, up to five to six percent, they are hard to define. But a big portion of the pediatric spend. And these are the children that I serve in our clinic and try to advocate for in our program.


I like this slide. This actually comes from the literature, from colleagues of mine who really tried to kind of define this. So we had defined CSHDN, but really needed to define what we meant by children with medical complexity. Not that we’ve got a nice survey to really be able to get our numbers and our data, but this is a nice visual. So essentially, as its been described before, these are children who often have high service utilization, so multiple medications, frequent hospitalizations, frequent ED visits, multiple specialists, home care services, durable medical equipment, technology. Many of these kids have tracheostomies, they have ventilators, and they do all of this at home. So that’s kind of how we look at this population. This is a child who happens to have complex medical needs. I use this picture with permission and encouragement actually. This is one of my patients. And you can see that — she was here not long ago, advocating, maybe talking to some of your colleagues.


So essentially, you know, what do we do to kind of support these families? And families like this, you know, of this patient that I have here, we know that these families do a lot better, and these kids do a lot better when they are in a medical home. Right? When we are able to provide accessible care that’s coordinated. And as I teach my medical students, my residents, all those “c” words, right? So medical home is coordinated, and it’s culturally effective, and it’s compassionate. And all of those things work a lot better and are better for children when they are in medical homes and things are coordinated well for them. There are barriers. Some of those have been discussed, and I think Rylin will talk a little bit more of those from a parent’s perspective. But there are barriers. So these kids are frequently hospitalized, as I said, and they have ED visits. Parents struggle to manage the care of their children, while also just leading their lives, making a living, going to work, caring for their family members. And then also trying to make it to all their specialty visits, care for their child when they are hospitalized, and make it to the PCP office.


And providers struggle too. So we struggle to provide coordinated care, and there’s a lot of work that has to happen very realistically outside of that clinical visit, which is kind of our reimbursable unit. So to be a good provider, and we all have pretty high standards for ourselves, you really have to coordinate with those other providers and all the other care team members outside of that clinical visit. And unfortunately, our reimbursement structures don’t always support that, nor do our electronic medical records. And other ways that we try to communicate. So a lot of that stuff happens outside of normal patterns. But kids benefit, and providers benefit when we’re able to do this.


I’m going to let you guys just look at this and tell you a little bit more about what we do in complex care. So this is a care map. I think Stephen started out each of his meetings, which is really admirable, for the family being able to draw out their care maps. I will let you guys look at that as I talk for a moment. So the complex care program, just a little bit about kind of what I do at Children’s National, and what we try to do, kind of looking at complex care problems across the country. As I mentioned, it’s hard for many providers to kind of provide the kind of care that we’ve talked about the kids need. So over the past 10 or 15 years, we’ve seen the emergence of complex care programs, often in academic institutions to provide that coordinated care. And so ours lives within the Goldberg Center for Community and Pediatric Health, which is at Children’s National. And our larger pediatric center, we have about 40,000 agents that we see, about 82 or 83% of those are D.C. residents, and about half of those live in Ward 7 and 8 in our primary centers. And then within the complex care program, we talked about kind of percentages, it kind of works out. We have about 900 kids that we see in complex care, spread among a little bit over a 1.0 full time equivalent provider, and other providers as well, and a larger care team. So most of the kids, as we’ve kind of defined children with medical complexity and we struggle, right, because we lack an actual tool to do this, our kids that, as Mark referred to earlier, are that subset of really, really complex kids. Often times these kids are technology dependent, and require lots of other services.


So I’m going to refer to the care map that you see here. This is a care map of one of my parents of one of my patients, actually created. We encourage our families to draw these care maps; it’s a validating experience. It’s also a very — it’s really wonderful as a provider to see this pictorial representation of what they go through. And as she was completing it, I asked her, I said, so how do you feel? She picked up the piece of paper and she said, “This one piece of paper? Really heavy.” It was emotional for me, right? To hear her talk about it. She goes, and I realized that I am so tired. And then she pointed down to where she drew that her child has a disorder, and she goes, “And I realized why none of us sleep.” And they have some troubles with that. But she also said, “You know, it’s worth it. All of this hard work is worth it, because my child is worth it.” And I said to her, I said, “I agree.”


I’m going to shift gears a tiny bit and tell you a little bit about our experience with the care award, which was a wonderful project, that we were so happy to be involved in. So the Children’s Hospital Association received a healthcare innovation award from the Centers for Medicaid and Medicare Innovation. This happened about 2014, and then they started enrolling patients in 2015. It was a collaboration between 10 hospitals and CHA, where they actually rolled out some really novel and elegant change concepts that could really improve the care that we provide for families and patients. Simple things like they were — it was so simple, they were beautiful. Like, care plans. Of course we should all be creating care plans. Access plans; making sure our families know when they need to go to the emergency room, or when they would need to seek care, and under what conditions. And when their status changes, what should they do? But really writing it out and telling the parents to be aware about other team members as well. So it was eight state Medicaid agencies, as I’ve said here. About 8,000 patients were enrolled. And the entire goal essentially was to improve care, and also see that if we could kind of reduce caregiver burden, while also reducing cost.


So this describes the ten hospitals and Children’s National was one of those hospitals. So before I go directly into the last slide that actually shows the results — I see that I’m running out of time too. It’s very easy to go over when you’re passionate about something. It’s important. It was actually a really amazing experience for our hospital to be a part of this award, and we are very privileged and happy to be involved. We were able to really identify this patient population a little bit better, harness the resources that we needed, have institutional recognition that this was a really needed intervention, and a very worthy population. And then we learned a few other things kind of along the way. And one specifically was just the importance of kind of family engagement, and really putting the family at the center. We have a parent navigator program, which is a peer to peer mentorship program that’s been in existence at Children’s since 2009, and we were able to involve our parent navigators who are paid employees of the hospital, who, as a side note, actually are parents themselves, and children with — many of them have very complex medical needs, some of them have special healthcare needs, and they really are amazing in that they can kind of sometimes get at barriers and needs from other parents that honestly we as providers would never be able to obtain. And so they’ve been really intimately involved and we’re intimately involved in kind of rolling out all of our change concepts. It was much more effective in some respects than having that internal advisory board, because they were imbedded within our health system, without our electronic medical record, and so they kind of were our balance and check the entire time. Is what we’re trying to accomplish actually right for families? And then the second thing around keeping kind of the family at the Center, is one of the things that emerged out of the better coordinated care was the identified need for families to be able to have this as, by physically not actually being at the hospital. So we were able to roll out direct medical care telemedicine visits, and we’ve been piloting that for quite some time now, especially around hospital discharge and care coordination visits. So if you have a medically complex child that’s been admitted to the hospital for weeks on end, and then the hospital discharge summary [unintelligible] kind of clueless, says, “Let’s follow up with your PMD in two days.” Really what I want to see, unless I’m rechecking a weight or I’m concerned about a respiratory status, is I want to see them in their home environment, and I want to see how they are doing, right? And I want to look around at your equipment. So we’ve been able to roll out, through HIPAA compliant platform, to help direct to consumer telemedicine, which has been amazing. The first time that I actually did — I think I did the first complex care telemedicine visit at Children’s, and the mother screamed for a minute straight. She was so excited. She was like, “Dr. Fratantoni!” There’s my door. She was really excited. And then I was able to open up some of her equipment and some other things that had been issues. But it was around like, what had been said before, is really putting the family kind of at the center of what we do.


Now for the good results from the care [inaudible], we have others in the room that certainly can speak to this as well. Is we were actually able to move the dial on this. And this was a really large study, I sent with ten hospitals, and over 8,000 kids, but we were able to reduce ED discharges, and really improve the family experience a little bit as well in the process. And decrease the spend. So this makes me — this and this entire panel make me look forward in the future of our kids with medical complexity. Thank you.


SARAH DASH:  Next, we’ll hear from Rylin Rogers.  Thanks, Rylin.


RYLIN ROGERS: So I’m delighted to be here this morning. This whole conversation really reflects my life and the opportunities that exist from this conversation. My frame has always been that families who are raising children with disabilities and complex healthcare needs are really the canaries in the coal mine of our Americans. And the lessons that we can teach this system, and what we move change forward, is the transformation and the opportunity that we can all benefit from. You’ve heard today about access to coverage, and access to adequate insurance. I think the piece that really stuck for me to the conversation is how that varies so significantly from state to state. One of the most common questions I get as a family leader is, where should I move to? And that is a real reflection of challenging experiences in America. I think about that in terms of pediatric healthcare, but we are also seeing similar questions in the adult healthcare system. But there are some lessons for us to think about that, and transforming that.


We talked a little bit about cost and some of the real life issues for this population in terms of the costs that they are experiencing. I know families that are raising kids who know more about the pharmaceutical debate, than the pharmaceutical companies. And there is some value in that, and really thinking about the complexity of getting the right medication when the medication is a life or death issue for the person you love most. Really thinking that through. And cost isn’t just about healthcare, it’s about access to community. Some of the needs around durable medical equipment may seem like a hospital specific question, but really is a life question. So thinking those things through is critical and important. I love this conversation, because the other piece about this population that’s so relevant in America, is that there is agreement. Families and providers both see the struggle, and we understand from each other, and we’re at a place to try to raise that struggle to a change. And from movement. And really, what a lesson for America. We can see across the different siloes and really be in a place to think about how to move that struggle forward.


So a little bit about what brings me here. This is me 21 years ago at the moment that I knew that my life would be totally about healthcare policy. This is my son, Matthew. He’s now 21, and his sister Laura is 18, and they both have mitochondrial myopathy. In this picture, we didn’t know that, because we were a little bit ahead of the science in our family, in terms of getting diagnosed [inaudible]. But we knew that what was going to happen to our family, and how our lives would change forever, was confusing, transformative, and overwhelming. But this is me, and this is me now. But it’s really a reflection of millions of American families. I always like to take a step back, and think about how there are other families in this room that have this picture in their heart and their lives. And there are families right now having this picture somewhere in America. And those are the families that this discussion is most important to.


One of the things to know about our family’s life is that it was touched by many things. We were uninsured and uninsurable until the passage of the ACA. We had a system and an experience with long Medicaid wait lists. We benefitted significantly from Title V programs doing some gap filling. So really thinking about all the different parts of the systems that touched families. We thankfully got to the lovely place of being engaged in both private insurance and Medicaid waivers to support and to ensure adequate health insurance and coverage. And then really understanding the challenges of getting those systems to work together. I love the comment about the multiple prior authorization paperwork. I have a lot to say about the hours of my life that I have spent in prior authorization paperwork. And now my children are on their own — not really — but have self-managed their prior authorization paperwork. It’s given me back at least ten hours of my week, them taking it on. So it’s great outsourcing.


I do want to take a step back. There is conversation about the [unintelligible] population, and using the term “children with medical complexities”. There is lots of value to define populations and helping us to understand. There is also some challenge and risk to that, that I’m concerned about. I always like to take a big step back and realize that the only label that matters to children and families is the child’s name. And that’s the piece that we all can forget. The other reality is that we often are labeling children in different silos, but not empowering families and children themselves to understand that being a child with medical complexity also often correlates to being an individual with a disability. And we often think about sometimes it’s based on status and healthcare outcomes that you can slide across different spectrums. And when we can get into some really challenging unintended consequences, when we define populations. The one that weighs heavily on my heart right now is families who are resisting the opportunity that is medically available to remove some of the technology from their children’s lives because it would lead to reduce access to service. So if we have created a system where family maintains a ventilator, or a G tube, because that’s how you get care, then we’ve got work to do in systems of services.


I also really believe strongly that when we think about children’s populations, we have to start thinking about what is the definition or the label would be in adulthood, and start to help people embrace that from the very beginning. We talk a lot about the transition cliff, and one of the pieces we can do is help get people get connected to adult identity from the very beginning. I really, truly believe that this is about a [unintelligible]. Too often in America we look at healthcare from the adult side and push down. There is so many lessons and opportunities from pediatrics that we can trickle up. We’ve heard about Steve’s great example about how collaboration with families and end users drive systems in Delaware. Think about what that could mean to lots of different models. We think about our lived experience of really navigating having private insurance and public insurance and trying to make that work. This is something that’s going to be more and more critical in adult populations. We have lessons to learn there. We think about the reality that families are living quality of life issues while we are outside of the hospital, that life in systems and services are about school, access to community, and that’s true across the life force. I like to think about that. The one nugget that I love most from my work in pediatrics, and my work in [unintelligible] is the acknowledgement of the importance of the family voice of individuals with medical complexity, of the youth voice, and the movement to make those voices a paid part of what’s driving this system. That’s a lesson that we can take to all parts of our systems.


I also love this slide, because it’s terrible. It really is a picture of how our federal policies interact around disability and explains in one picture why the care map is such a challenge, by understanding that prior authorization is such a challenge. Why everything is siloed and not working. It’s my life’s work to some day have a much better picture. You’ve got to have a lot of job security in that. But I do think that there is some lessons that causes us all to keep that picture in mind. I love the comment about multiple care clinics. I will share a truth of the matter, which is the fact that I blocked the voice mail on my phone for the ten care coordinators that were assigned to my family, because I did not have the time to coordinate the care coordinators. I couldn’t care for my children, and work, and as it turns out, do the things they weren’t going to be able to deliver anyways, and talk to them. So I blocked them on my phone. Interestingly, while I was primary investigator on a care coordination research project. Because my children are 18 and 21 now, we are off the cliff, and transition is a real issue. I remember when I started this work at their birth, I was delighted to see all of the energy and focus around transition. And I naively believed that it would be solved by the time I needed it. Boy, was I super-duper wrong. So I think that the reality of the challenges of this are the next step, the important step. Because the outcomes, what we get as a society, was doing this wrong. My children are amazing people, and they have lots to contribute to society. But making sure that they are able to be in college — in order for my daughter to accept the college scholarship, she had to lose Medicaid to cross state lines. What does that mean? What are these barriers? That cliff of after EPSDT. How do you make sure that your coverage is adequate? These things are real, and this is our work, to make sure that we can launch people to contribute to our society.


My final picture is where I live, sort of — sort of over here, and sort of over there. But this is our home in Indiana. And I always want to remember that this conversation looks very different based on where you live in America. In Indiana we lived an hour and a half away from Indianapolis, on 200 acres of my husband’s grandparent’s farm. Very beautiful. But there was no access to home healthcare. The entire time we had Medicaid waivers, they were never serviced in our home. I did all of the medical services. This was the reality of rural America; there is real challenges. There is challenges of crossing the state lines, and we need to talk about those families in a meaningful way in all parts of our conversation.


SARAH DASH:   Wow, thank you so much. So we have about 20 minutes for audience Q&A, and if you have a question, you have a green card, you can stand at the mic, or since it’s a little crowded you can raise your hand, and I will try and call on you. While folks are getting organized, I just want to comment. It’s interesting, one word I did not hear at all in describing this population is the word “vulnerable”. I know sometimes we talk about vulnerable populations and I just really want to comment on the extraordinary strength that I think really just shows through for the patients, the children themselves, the families, the providers, and for everyone who’s working to address these issues. I think it’s extraordinary, and so I’m glad we didn’t hear that word, and I want to commend you. Does anybody have a question for our panel? If not, I will dive into some of my questions. Dr. Frantantoni, I was curious, because you mentioned the direct medical care on the telemedicine visits that you started and I was actually struck by some of the parallels between children with medical complexity, and adults with medical complexity, and some of the programs that are currently in place that independence at home actually — so home care visits for adults. I was kind of curious if there is, for you or anyone on the panel, if there is any thought to demonstrations or programs that would kind of provide direct care in the home?


  1. KAREN FRATANTONI: So I will let you guys speak to demonstration projects, but I can speak very directly to kind of the direct to consumer telemed is a different thing than having, you know, a group of providers at a hospital center that are the experts, and then you have another provider in the community that has someone in their office, and then you’re using the cardiologist at the health center to kind of — this is actually just me and the patient, and then sometimes I can actually involve our care coordinators, our case managers, and sometimes a parent navigator. Or we have — I have done telemedicine visits where I have involved teachers. So we can actually get at some behavioral health stuff, and the teacher and the parent and even a specialist kind of involved. Reimbursement is still an issue, so we’ve done some work with our D.C. Medicaid programs to get some reimbursement. We have some grant funding through the hospital system to actually implement this, but that is one big challenge, is just reimbursement. We see kids in Maryland, Virginia and D.C. and then elsewhere as well, but those are our primary, so the reimbursement is slightly different in each of those areas around direct consumer telecalls. And the other thing realistically too, is just — and this is going to sound simple, but the scheduling. Just the actual, how do you tell families about this? We struggle with this. We actually had an intern work with us all summer to try to enroll families in telemedicine. So you schedule them, you get them to download the app, and then you call them in advance, and all of that realistically takes a lot of time. So it’s embarrassing to admit, but I schedule most of my telemedicine visits and then I call parents to remind them. That’s probably not a great use of my time. I don’t know that I’m great at it, but so some of those realistically can come up.


DEIDRE GIFFORD:  I will just mention that telemedicine in general is a cover all service in Medicaid and states don’t need any kind of special waiver to cover telemedicine, but as Karen mentioned, you will see variation from state to state in what they choose to cover, and how much they choose to pay. The other thing that I meant to say during my comments that’s important to this conversation and sort of underlie everyone’s conversation, but we didn’t say out loud, is that most children in Medicaid and CHIP are in Medicaid managed care. There are only a few states where the primary relationship is between the state and the provider, so most of the time for these children, they will be an intermediary, which is to plan some of the care coordinators at the health plan level, but that’s relevant to the conversation about telemedicine, it was those people vary from plan to plan as well.


SARAH DASH:   So we have a question on one of the green cards, which I think Rylin, this was a point you were making. Can you elaborate on the point about families who have incentives to keep the DME and the G tubes, et cetera, to maintain their eligibility? Can you share a little more about that?


RYLIN RODGERS:   Some of the challenges are in terms of how a family accesses Medicaid, so if you’re on a home and community based waiver system, and you need to meet a level up here to be eligible, and in my own state of Indiana, there is an aged and disabled Medicaid waiver that serves Medicaid complex programs. And it requires an eligibility to have basically some sort of outside equipment. So a G tube qualifies and if your child becomes stable enough to no longer need the G tube, then you would lose Medicaid through the waiver service and the other supports that might be actually making your child stable and able enough to move beyond the G tube. And that is a concrete example related to coverage, but there is also the part that is discomforting to me, is there is a growing sort of access point. You have coverage, but you get this enhanced or what I like to call “real” care coordination if you meet this [unintelligible] and then great things happen: you have a fabulous primary medical home, your team is working all together, and that helps you and your family function well, and maybe your health improves, and then if your child is not meeting their level of complexity to do that, that real care coordination can fall away, and that loop can start again. So there is lots of challenges in thinking it through. Obviously there is limits to these [inaudible]. High quality, effective care coordination is time intensive, but think about what the investment of that time does in terms of healthcare costs in some of the great work that came out of the [unintelligible] and other efforts to really evaluate this.


SARAH DASH:  Stephen or Deidre, do you have comments as far as from the state or federal perspective on why [unintelligible] eligibility will be in place, and what might be done to address that? Maybe you’ve done something about it in Delaware?


STEPHEN GROFF:  I’m challenged. So that was something that I had not heard, and it might be because of the fact that we don’t serve our children in Delaware through the waiver, we actually do have the program that I talked about, which probably has a somewhat less rigid medical eligibility component, and the waivers that you’ve experienced. But it does ring true because I have heard similar kinds of frustration among individuals who meet a level of care and need for eligibility due to a chronic condition, and get the care they need in order to improve their health status and then lose their eligibility and no longer receive the care that they get — or what they need in order to maintain that level, at that higher health status, and then just cycle. And those cases, the argument that I get is, why don’t we have some responsibility around certain disease specific states, which we don’t. But it is an interesting dilemma, I understand how it can happen, and it’s something I’m going to look at, just to make sure that we’re not experiencing that in Delaware.


DEIDRE GIFFORD: So I’ll give a generic response because I don’t know that particular [unintelligible] the program or the child. For some home community based services [inaudible], there is a very high level of writ large. An individual needs to meet what would be an institutional level of care, meaning in order to qualify for the waiver, you need to demonstrate that the services being provided are to prevent the individual from being institutionalized. Whether that requirement — my guess, and I’m not the subject matter expert here — is statutory with respect to some of those sections like [inaudible]. So as a result a state is obligated to operationalize. What does that mean to be institutional eligible? And so that is probably why it turns into things [inaudible] or obviously if your family are trained. But some of these other more complicated situations might have been sort of operationalized, because that’s how we define otherwise eligible for institutional there, and I just want to clarify that a family that was otherwise Medicaid eligible by basis of income, wouldn’t lose their Medicaid benefit, but for somebody who becomes eligible through the waiver because of the combination of income and medical necessity, could potentially lose some of those services.


SARAH DASH:  Thank you. We have a question at the mic, and then I have one on the card.


AUDIENCE MEMBER:  My name is Nick Fiore from the [inaudible] Center for Health Policy. I want to first thank you all for your presentations and for being here today. Maybe a sort of forward looking question; I’ve heard many of you talk about the role of technology, medical products and pharmaceuticals in this space as those sorts of products continue to move forward to have potentially curative or treatments through gene therapies that can restore significant functional status for things like muscular dystrophy and inherited retinal blindness. What do you see as some of the near term opportunities either through CMMI pilots to make sure that those sorts of treatments are being targeted effectively in the very complex care management landscape, and what do you see as maybe also some long term opportunities either through new regulation or CMMI pilots or legislation to enable access, to make sure that reimbursement for those products are actually tied to patients getting them, and them working over a long period of time?


SARAH DASH:  Anyone want to talk first?


RYLIN RODGERS:  So I think we have some lessons of history to guide us. The one that just popped into my head is the movement around cochlear implants, and how that’s transformed the disability experience for children with significant hearing loss. And I know one of the beauties — I was thrilled to hear you say EPSDT, because I almost was going to get a tattoo, and I want EPSDT so much. I really do.  But under EPSDT, we were able to ensure that a generation of children benefitted from that intervention, and the follow along care, because as you’re alluding to, it’s ongoing, so the technology of mapping, and as technology has changed in this generation, it’s been multiple levels. Where we’ve seen a challenge that we need to be vocal about, is when those same children have become adults, their access to maintain that coverage, so I often hear from young adults who are now in college and they need their mapping updated for their cochlear implants, and they hit a wall in terms of insurance access into that. So I think there is some lessons there. And there is also great work happening from the advocacy world of families seeing these opportunities, working aggressively with their state partners, with the federal partners at Medicaid to say, “We need to make sure that this is going to be covered, and that we can benefit from this moving forward.” But it is a frontier that requires a lot of attention and thought.


SARAH DASH:  Thank you. Okay, we are getting close to our time. I just wanted to ask a question that was on the card. So there is several pieces of legislation currently being considered to address children with medical complexity and their needs, and there was a question for the panel as whether you could comment on the ACE Kids Act which deals with enhanced pediatric health [inaudible] for children with complex medical conditions. And anyone wants to comment on that or give an explanation? Feel free and with the caveat that obviously the alliance is not here to lobby or weigh in, we just want to get the panel’s thoughts.


STEPHEN GROFF: So we are obviously looking at the ACE Kids Act. Deidre also talked about the model. I think that as my new advisory committee moves forward with this work, clearly we are going to give recommendations around what models of care should look like, and I would imagine that it will involve some version of the health home or health home like model. So we’re interested in exploring.  At this point, it would be premature to say what road we’ll go down. That needs to be a broader discussion with our stakeholders [inaudible] and probably with CMS. But we are hopeful that there are now some opportunities out there that we can possibly capitalize on to help us expediate our progress and we could even leverage some additional [inaudible].


SARAH DASH:  We have a question at the mic.


AUDIENCE MEMBER:  Thank you very much. I appreciate your program, it’s been a great presentation. I’m with the Marshfield Clinic in Wisconsin, and my question goes to the issue of who owns this problem. And just to describe briefly, we take care of about a million people in Wisconsin, but we have 200 kids that fall into this particular category, and what we’ve found is with care coordination nurses that are purely assigned to individual families, we can save about 20% on their hospitalization costs. And that reduces the overall cost considerably. What happens to these kids though, they come in as commercial patients initially, spend down, basically bankrupting their parents, wind up on Medicaid, ultimately Medicare disability population. The question is: We can show that there is enormous savings if someone spends the little bit of money that it takes to pay for those care coordination nurses, and we are having a very difficult time. For the most part, we relied on philanthropy to pay the salaries of those nurses. I think you all have done a wonderful job describing the problem, but I don’t see who yet is accepting the responsibility. If you could help us understand that, we’d certainly appreciate it.


DEIDRE GIFFORD:   Well, thank you for bringing up that topic. And I think part of your comment and question is about who is ultimately responsible for developing a payment model that will support the types of innovations that we’ve heard described this morning. We all know that sometimes the current payment models that we have in place don’t necessarily support the most logical approaches to care delivery, and [inaudible] the challenge of fully funding highly skilled care coordinators. I will say that there are a lot of examples out there where the care model, something similar to what you described, is being supported and funded. I think we’ve heard about a few under demonstration authority. There’s further opportunity with the [inaudible] model, and I would encourage you to have a look at whether that’s something you be interested in. So I think it’s fair to say that — and this was certainly true in the state where I came from before I came to CMS, at the initial focus around healthcare reform had been on the adult population, and meanwhile [inaudible] reform. So it’s been a catch-up maybe around pediatrics, but I think there are lots, and you’ve heard about some of them this morning, there are lots of bright spots and things that we can look to. I don’t have an answer to your question about who is the owner. Obviously there are multiple, and we all have a role in addressing it.


SARAH DASH:  So we are coming to the end of our time. I do want to take a minute and ask everyone on the panel to briefly describe if there is kind of one take away that you hope that the audience today can take with them. Could you share that? Then I will ask our audience, before you leave, if you could kindly fill out the blue evaluation form in your folders, we would really appreciate that. We do take all of your comments into consideration as we are planning future events. So, key take aways for our audience? Do you want to go first, Rylin?


RYLIN RODGERS:  For me, I think it is that there are opportunities and examples of efforts underway to make things better, and a key part of making sure that it’s effective and real sustained change is making sure that children and families are at the center, and are driving the system to move forward.


KAREN FRATANTONI:  So I was going to say almost the same thing about keeping the family and the patient at the center of what we do. This is for them.


STEPHEN GROFF:  So not to be redundant, so I won’t. To go back to that gentleman’s question, I think perhaps the key take away is that we all are part of this problem and we all have to acknowledge that and take our share of the responsibility and work together, because it’s too complex to address the comprehensive way, unless we all take part.


DEIDRE GIFFORD:  I think I will go with the glass half full take away, because there are many challenges remaining, but many bright spots and there are so many dedicated advocates and providers and bureaucrats who are moving forward on this challenge, so I think there is a lot to go on.


SARAH DASH:  Great. Well, thank you so much all of you. You do such great work and you’ve taken time out of your busy schedules to come and educate all of us. We really appreciate it. Thanks again to the Children’s Hospital Association for making this possible, and to all of you for spending your morning with us. Thank you to our panel.