[House Hearing, 114 Congress]
[From the U.S. Government Publishing Office]




         EXAMINING THE ADVANCING CARE FOR EXCEPTIONAL KIDS ACT

=======================================================================

                                HEARING

                               BEFORE THE

                         SUBCOMMITTEE ON HEALTH

                                 OF THE

                    COMMITTEE ON ENERGY AND COMMERCE
                        HOUSE OF REPRESENTATIVES

                    ONE HUNDRED FOURTEENTH CONGRESS

                             SECOND SESSION

                               __________

                              JULY 7, 2016

                               __________

                           Serial No. 114-158





[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]








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                    COMMITTEE ON ENERGY AND COMMERCE

                          FRED UPTON, Michigan
                                 Chairman
JOE BARTON, Texas                    FRANK PALLONE, Jr., New Jersey
  Chairman Emeritus                    Ranking Member
ED WHITFIELD, Kentucky               BOBBY L. RUSH, Illinois
JOHN SHIMKUS, Illinois               ANNA G. ESHOO, California
JOSEPH R. PITTS, Pennsylvania        ELIOT L. ENGEL, New York
GREG WALDEN, Oregon                  GENE GREEN, Texas
TIM MURPHY, Pennsylvania             DIANA DeGETTE, Colorado
MICHAEL C. BURGESS, Texas            LOIS CAPPS, California
MARSHA BLACKBURN, Tennessee          MICHAEL F. DOYLE, Pennsylvania
  Vice Chairman                      JANICE D. SCHAKOWSKY, Illinois
STEVE SCALISE, Louisiana             G.K. BUTTERFIELD, North Carolina
ROBERT E. LATTA, Ohio                DORIS O. MATSUI, California
CATHY McMORRIS RODGERS, Washington   KATHY CASTOR, Florida
GREGG HARPER, Mississippi            JOHN P. SARBANES, Maryland
LEONARD LANCE, New Jersey            JERRY McNERNEY, California
BRETT GUTHRIE, Kentucky              PETER WELCH, Vermont
PETE OLSON, Texas                    BEN RAY LUJAN, New Mexico
DAVID B. McKINLEY, West Virginia     PAUL TONKO, New York
MIKE POMPEO, Kansas                  JOHN A. YARMUTH, Kentucky
ADAM KINZINGER, Illinois             YVETTE D. CLARKE, New York
H. MORGAN GRIFFITH, Virginia         DAVID LOEBSACK, Iowa
GUS M. BILIRAKIS, Florida            KURT SCHRADER, Oregon
BILL JOHNSON, Ohio                   JOSEPH P. KENNEDY, III, 
BILLY LONG, Missouri                     Massachusetts
RENEE L. ELLMERS, North Carolina     TONY CARDENAS, California
LARRY BUCSHON, Indiana
BILL FLORES, Texas
SUSAN W. BROOKS, Indiana
MARKWAYNE MULLIN, Oklahoma
RICHARD HUDSON, North Carolina
CHRIS COLLINS, New York
KEVIN CRAMER, North Dakota
                         Subcommittee on Health

                     JOSEPH R. PITTS, Pennsylvania
                                 Chairman
BRETT GUTHRIE, Kentucky              GENE GREEN, Texas
  Vice Chairman                        Ranking Member
ED WHITFIELD, Kentucky               ELIOT L. ENGEL, New York
JOHN SHIMKUS, Illinois               LOIS CAPPS, California
TIM MURPHY, Pennsylvania             JANICE D. SCHAKOWSKY, Illinois
MICHAEL C. BURGESS, Texas            G.K. BUTTERFIELD, North Carolina
MARSHA BLACKBURN, Tennessee          KATHY CASTOR, Florida
CATHY McMORRIS RODGERS, Washington   JOHN P. SARBANES, Maryland
LEONARD LANCE, New Jersey            DORIS O. MATSUI, California
H. MORGAN GRIFFITH, Virginia         BEN RAY LUJAN, New Mexico
GUS M. BILIRAKIS, Florida            KURT SCHRADER, Oregon
BILLY LONG, Missouri                 JOSEPH P. KENNEDY, III, 
RENEE L. ELLMERS, North Carolina         Massachusetts
LARRY BUCSHON, Indiana               TONY CARDENAS, California
SUSAN W. BROOKS, Indiana             FRANK PALLONE, Jr., New Jersey (ex 
CHRIS COLLINS, New York                  officio)
JOE BARTON, Texas
FRED UPTON, Michigan (ex officio)






















  
                             C O N T E N T S

                              ----------                              
                                                                   Page
Hon. Joseph R. Pitts, a Representative in Congress from the 
  Commonwealth of Pennsylvania, opening statement................     1
    Prepared statement...........................................     2
Hon. Gene Green, a Representative in Congress from the State of 
  Texas, opening statement.......................................     3
Hon. Fred Upton, a Representative in Congress from the State of 
  Michigan, opening statement....................................     5
    Prepared statement...........................................     6
Hon. Frank Pallone, Jr., a Representative in Congress from the 
  State of New Jersey, opening statement.........................     7

                               Witnesses

Jay G. Berry, M.D., M.P.H., Assistant Professor of Pediatrics, 
  Harvard Medical School.........................................     9
    Prepared statement...........................................    11
    Answers to submitted questions...............................   151
Matt Salo, Executive Director, National Association of Medicaid 
  Directors......................................................    30
    Prepared statement...........................................    32
    Answers to submitted questions...............................   156
Maria Isabel Frangenberg, Project Coordinator, Family Voices.....    39
    Prepared statement...........................................    41
    Answers to submitted questions...............................   165
Tish West, parent of a child with medically complex conditions...    67
    Prepared statement...........................................    69
    Answers to submitted questions...............................   170
Steven Koop, M.D., Medical Director, Gillette Children's 
  Specialty Healthcare...........................................    76
    Prepared statement...........................................    78
    Answers to submitted questions...............................   174
Rick W. Merrill, President and Chief Executive Officer, Cook 
  Children's Health System.......................................    97
    Prepared statement...........................................    99
    Answers to submitted questions...............................   180

                           Submitted Material

Statement of the American College of Cardiology, submitted by Mr. 
  Pitts..........................................................   127
Statement of the Cooley's Anemia Foundation, submitted by Mr. 
  Pitts..........................................................   129
Statement of Medicaid Health Plans of America, submitted by Mr. 
  Pitts..........................................................   131
Statement of Seattle Children's Hospital, submitted by Mr. Pitts.   142
Statement of the Children's Hospital Association, submitted by 
  Mr. Barton.....................................................   144

 
         EXAMINING THE ADVANCING CARE FOR EXCEPTIONAL KIDS ACT

                              ----------                              


                         THURSDAY, JULY 7, 2016

                  House of Representatives,
                            Subcommittee on Health,
                          Committee on Energy and Commerce,
                                                    Washington, DC.
    The subcommittee met, pursuant to call, at 10:15 a.m., in 
room 2322 Rayburn House Office Building, Hon. Joe Pitts 
(chairman of the subcommittee) presiding.
    Members present: Representatives Pitts, Guthrie, Barton, 
Murphy, Burgess, Lance, Griffith, Bilirakis, Long, Brooks, 
Collins, Upton (ex officio), Green, Engel, Schakowsky, Castor, 
Matsui, Schrader, Kennedy, and Pallone (ex officio).
    Staff present: Rebecca Card, Assistant Press Secretary; 
Paul Edattel, Chief Counsel, Health; Graham Pittman, 
Legislative Clerk, Health; Michelle Rosenberg, Detailee, 
Health; Jennifer Sherman, Press Secretary; Heidi Stirrup, 
Policy Coordinator, Health; Sophie Trainor, Policy Coordinator, 
Health; Josh Trent, Deputy Chief Health Counsel; Tiffany 
Guarascio, Minority Deputy Staff Director and Chief Health 
Advisor; Rachel Pryor, Minority Health Policy Advisor; Samantha 
Satchell, Minority Policy Analyst; and Andrew Souvall, Minority 
Director of Communications, Outreach and Member Services.

OPENING STATEMENT OF HON. JOSEPH R. PITTS, A REPRESENTATIVE IN 
         CONGRESS FROM THE COMMONWEALTH OF PENNSYLVANIA

    Mr. Pitts. The subcommittee will come to order. The chair 
will recognize himself for an opening statement.
    Today's subcommittee hearing will examine a new discussion 
draft of the Advancing Care for Exceptional Kids--the ACE Kids 
Act, legislation championed by Mr. Barton and Ms. Castor.
    The goals of the ACE Kids Act are laudable--to improve the 
delivery of, access to, healthcare for children with complex 
medical conditions served by Medicaid and who all share the 
goals and want to prioritize the needs of these children.
    The committee received robust feedback from stakeholders on 
the introduced bill. Many expressed concerns with the bill's 
ritual scope, approach and cost. So I applaud the co-sponsors 
for working through the committee to address serious 
stakeholder concerns by taking a new approach in the draft we 
are discussing today.
    Today, we will hear from witnesses representing a diverse 
mix of Medicaid stakeholders representing parents, clinicians, 
researchers, providers and Medicaid directors. Every child is 
unique and every state program is a little different.
    So we want to listen and learn about the ways in which 
children with complex medical needs are served by the Medicaid 
program currently. Medicaid already provides a critical safety 
net for providing care for some of our youngest and most 
vulnerable patients. Yet, when a child is born with a rare 
disease or has medically complex conditions there can be unique 
challenges.
    In many ways, state Medicaid programs are already 
successfully leveraging the expertise of providers and plans to 
provide needed care for medically complex children. Yet, we 
know challenges exist and the status quo can be improved.
    So today we look forward to hearing from witnesses about 
ways we can increase options, reduce barriers, enhance 
analysis, and better align incentives to care for these 
children.
    Finally, let me just note that the discussion draft before 
us represents one approach but, clearly, does not exhaust all 
the good ideas others may have.
    So moving forward, the committee welcomes feedback on how 
we can improve care for children with medical complexity 
without disrupting the successful approaches already in place.
    [The prepared statement of Mr. Pitts follows:)

               Prepared statement of Hon. Joseph R. Pitts

    The Subcommittee will come to order.
    The Chairman will recognize himself for an opening 
statement.
    Today's Subcommittee hearing will examine a new discussion 
draft of The Advancing Care for Exceptional (``ACE'') Kids 
Act--legislation championed by Mr. Barton and Ms. Castor.
    The goals of the ACE Kids Act are laudable--to improve the 
delivery of, and access to, health care for children with 
complex medical conditions served by Medicaid. I know we all 
share the goals and want to prioritize the needs of these 
children.
    The Committee received robust feedback from stakeholders on 
the introduced bill. Many expressed concerns with the bill's 
original scope, approach, and cost. So I applaud the cosponsors 
for working through the committee to address serious 
stakeholder concerns by taking a new approach in the draft we 
are discussing today.
    Today we will hear from witnesses representing a diverse 
mix of Medicaid stakeholders--representing parents, clinicians, 
researchers, providers, and Medicaid directors. Every child is 
unique. And every state program is a little different. So we 
want to listen and learn about the ways in which children with 
complex medical needs are served by the Medicaid program 
currently.
    Medicaid already provides a critical safety net for 
providing care for some of our youngest and most vulnerable 
patients. Yet, when a child is born with a rare disease or has 
medically complex conditions, there can be unique challenges.
    In many ways, State Medicaid programs are already 
successfully leveraging the expertise of providers and plans to 
provide needed care for medically complex children.
    Yet, we know challenges exist and the status quo can be 
improved. So, today we look forward to hearing from witnesses 
about ways we can increase options, reduce barriers, enhance 
analysis, and better align incentives to care for these 
children.
    Finally, let me just note that the discussion draft before 
us represents one approach, but clearly does not exhaust all 
the good ideas others may have. So, moving forward, the 
committee welcomes feedback on how we can improve care for 
children with medical complexity without disrupting the 
successful approaches already in place.
    I yield the balance of my time to the Chairman Emeritus, 
Mr. Barton.

    Mr. Pitts. I will yield the balance of my time to the chair 
emeritus, Mr. Barton.
    Mr. Barton. Well, thank you, Mr. Chairman, and I want to 
applaud you and the ranking member, Mr. Green, and Mr. Upton 
and Mr. Pallone for agreeing to this hearing.
    We have a bill that we have been working on for 4 years. 
Some of you in the room have been working on it a lot longer 
than that. I think, Mr. Chairman, you can tell there's a lot of 
energy in the room, a lot of positive energy, and we want to 
build on that.
    We have changed the focus of our bill. We have gone from a 
facility-centric bill to a family-centric bill and that's 
because we are open minded and we want to listen.
    Today, we are going to hear from six witnesses. Unusually 
for me, I actually read your testimony. I don't normally do 
that, and it's all good. I want to applaud our witnesses.
    Some of the testimony is very moving, Ms. West's testimony 
about her daughter especially and all that they have gone 
through. Mr. Koop, Mr. Merrill, who represents Cook Children's 
Hospital in my district, I am especially pleased that you are 
here, sir.
    We want to have an open hearing, Mr. Chairman. We want to 
put all the issues on the table. We want the American people to 
see Congress at its best where we agree on a premise and then 
we work together to find a solution.
    I can't say enough about Kathy Castor and her efforts, Gene 
Green and his efforts, Cathy McMorris Rodgers on my side of the 
aisle and Congresswoman Beutler, who just had a brand new baby 
boy who is totally healthy. But her first daughter would 
qualify for this program if they were Medicaid eligible.
    So we have 30 co-sponsors of the committee. Thirty members 
of our committee are co-sponsors of our original bill. We have 
almost 218 House members. We have over 30 senators on a 
bipartisan basis.
    So, Mr. Chairman, if we listen to these witnesses and then 
work together we can have a markup in this Congress. We can 
pass a bill through the House in this Congress. We can work 
with our friends in the Senate and try to get this if not as a 
standalone bill as part of a larger package that goes to the 
president and we can do something for our kids working 
together.
    So with that, Mr. Chairman, I yield back.
    Mr. Pitts. The Chair thanks the gentleman, and now I will 
recognize the ranking member, Mr. Green, 5 minutes for opening 
statements.

   OPENING STATEMENT OF HON. GENE GREEN, A REPRESENTATIVE IN 
                CONGRESS FROM THE STATE OF TEXAS

    Mr. Green. Thank you, Mr. Chairman, and I apologize for 
being late. I was giving a statement in one of our sister 
committees downstairs.
    I'm an original co-sponsor of H.R. 546, the Advancing Care 
for Exceptional Kids, or ACE Kids Act. I'm grateful to 
Representative Barton and Castor for their commitment to 
children with complex medical needs and their quest to improve 
the system of care provided to these children.
    I want to thank the chairman for having this hearing today 
and our witnesses for their time and passion. The ACE Kids Act 
aims to improve the delivery of care for children with complex 
medical conditions served by Medicaid. It presents a great 
opportunity for us to implement better care delivery and 
payment models to support children and their families.
    The bill seeks to improve coordination of care for 
children, address problems or fragmented access, especially 
when the care they need is available out of state and gather 
national data to help researchers improve services and 
treatments for children with complex medical conditions in the 
Medicaid program.
    The discussion draft we were examining attempts to address 
the goals of the introduced bill in a manner that incorporates 
and builds upon the diverse range of stakeholder feedback.
    I want to thank the stakeholders, Texas Children's Hospital 
in particular in our district area in Houston. My colleagues 
are moving this important legislation forward.
    Children with medical complexity require a lot of 
healthcare and generate significant costs. According to one 
study, there are 2 million of these children on Medicaid, 6 
percent of the total Medicaid population, and they account for 
40 percent of the Medicaid spending on children.
    While that data is compelling, it's important not to reduce 
these children and their families to statistics. We must do a 
better job and ensure that all of those exceptional kids get 
the care they need.
    I had the pleasure to meet a remarkable young lady named 
Adrianna, who was born with her heart outside her chest. Thanks 
to the excellent care she received at Texas Children's 
Hospital, she is a happy and thriving toddler. Her survival 
would not be possible without the premier care she received and 
this legislation will help more and make sure every child 
regardless of where they are born has the same opportunity.
    Like Adrianna, children with medical complexity have 
multiple illnesses, disabilities, and often see six or more 
specialists and a dozen more physicians and require the kind of 
care that takes them across state lines.
    Under the current system, parents of kids with complex 
conditions struggle to coordinate the intricate multistate care 
of their children. We need this legislation to make this care 
more coordinated and seamless for the families.
    This discussion draft is an important step forward. We must 
ensure that the final legislation is robust and meaningful to 
accomplish our shared goals in improving care and removing 
barriers for children with complex needs.
    I am happy to hear that we now have 218 co-sponsors to the 
ACE Kids Act. It proves that the health care of our children is 
an issue that is above partisanship and brings us all together.
    I look forward to working with my colleagues to move this 
legislation forward to give our children the bright futures the 
deserve and I thank the chairman for calling the hearing and 
our witnesses today and I yield the remainder of my time to my 
colleague, the lead sponsor, Congresswoman Castor.
    Ms. Castor. Well, thank you, Congressman Green, and thank 
you, Congressman Pitts, for calling the hearing today and I am 
also appreciative to Chairman Upton and to Ranking Member 
Pallone for all of their great staff work and their attention.
    I really want to thank by colleague, Congressman Joe 
Barton. Joe, you have been a tiger for these kids and families. 
Joe Barton, you have taught me how to be a better legislator 
because you just never give up and you never give in. And this 
truly is a committee effort, and with the help of Congresswoman 
Jaime Herrera Beutler.
    Over 200 bipartisan co-sponsors in this fractious Congress 
including Eliot Engel on this committee, Jan Schakowsky, thank 
you--Doris Matsui, thank you--Joe Kennedy, Tony Cardenas, my 
good friend, Brett Guthrie, Congressman Whitfield----
    Mr. Barton. We are about to get Billy Long. He doesn't know 
it yet.
    Ms. Castor. Good. I would think so. I would think so. Cathy 
McMorris Rodgers, Congressman Lance, thank you. Congressman 
Bilirakis, my good friend from Tampa Bay, Congresswoman Ellmers 
and Susan Brooks, thank you, Susan, very much.
    I became an advocate for these families after meeting of 
families and health professionals at St. Joseph's Children's 
Hospital in Tampa including Tish and Bill West, who are here 
today, and their daughter, Caroline.
    They explained to me what they had gone through early with 
fragmented uncoordinated care and how meaningful it was to have 
a medical home where they could save time, save money but most 
importantly get the best care for Caroline and that is what we 
want to replicate all across the country for these families.
    So I am grateful to everyone that has participated today 
and over the past few years and I look forward to bringing this 
bill to fruition and thanks again to Congressman Barton and to 
Congressman Upton--Chairman Upton and Frank Pallone as well and 
I will yield back.
    Mr. Pitts. The chair thanks the gentlelady. I will now 
recognize the chair of the full committee, Mr. Upton, 5 minutes 
for an opening statement.

   OPENING STATEMENT OF HON. FRED UPTON, A REPRESENTATIVE IN 
              CONGRESS FROM THE STATE OF MICHIGAN

    Mr. Upton. Well, thank you, Mr. Chairman, and all of our 
colleagues on both sides of the aisle.
    We know that the Medicaid program is a very important 
safety net that provides the needed medical care to millions of 
kids to communities across the country and in 2013 roughly half 
of all Medicaid enrollees were children.
    Many of the kids are healthy, well and primarily just rely 
on the program for routine medical care--preventive screening 
and other treatment.
    But we know that some of the kids served by Medicaid face 
very serious debilitating, even life-threatening conditions 
that make it so difficult for them to perform the activities of 
their daily life.
    The kids are often referred to as children with medical 
complexity because they may face any number of rare diseases 
and conditions which can force them to rely on very specialized 
care.
    We all want to ensure that the Medicaid program does right 
by these kids and their families that depend on the program for 
care, particularly the most vulnerable.
    So today we are discussing another bipartisan bill 
introduced by very good members of the committee. There's no 
really bad members on the committee. They're all good members 
of the committee.
    But the ACE Kids Act, led by Barton and Castor, seek to 
improve care for these kids. We first discussed the bill as 
part of 21st Century Cures Initiative a few years ago and since 
we have received a lot of feedback from our colleagues and 
stakeholders, many of which I know are in this standing room 
only room.
    I am glad to see such strong interest in working together 
to get the bill right and better serve the patients in need of 
help.
    So in that spirit of cooperation and collaboration I want 
to stress we all agree on the goals. There is no question about 
that--improving care coordination within a state, ensuring 
access to care across state lines and ensuring that we are 
leveraging the data to target interventions.
    But each of us also wants to ensure that any targeted 
improvements actually fix what is broken by building on what is 
working without disrupting proven successful models of care 
that help kids within the program today. I want to do 
everything that we can to ensure that we enhance care and 
protect choices within the program.
    So that is why we have the witnesses today. We need your 
feedback and we also want to hear from folks not on the panel. 
Whether it's managed care plans, individual Medicaid directors, 
physicians, nurses, the whole ball of wax.
    We invite them to continue to share their insights so that 
we can better understand what is working and how we might be 
able to move forward. And I don't know if other members on my 
side want any of my time, any of the co-sponsors? Susan, 
anybody else. I know, you did a great--I yield back the balance 
of my time.
    [The prepared statement of Mr. Upton follows:]

                 Prepared statement of Hon. Fred Upton

    Today, the Medicaid program is an important safety net that 
provides needed medical care to millions of children in 
communities across the nation. In FY2013, roughly half of all 
Medicaid enrollees were children.
    Many of these children are healthy, well and primarily just 
rely on the program for routine medical care, preventative 
screenings, and other treatments.
    However, some of the children served by Medicaid face very 
serious, debilitating, even life-threatening conditions that 
make it very difficult for them to perform the activities of 
daily life. These children are often referred to as ``children 
with medical complexity,'' because they may face any number of 
rare diseases and conditions, which can force them to rely on 
very specialized care.
    I know we all want to ensure that the Medicaid program does 
right by these kids and the families that depend on the program 
for care-especially the most vulnerable. So today we are 
discussing another bipartisan bill introduced by members of 
this committee. The ACE Kids Act, led by Chairman Emeritus 
Barton and Ms. Castor, seeks to improve care for these 
children.
    We first discussed this bill as part of the 21st Century 
Cures initiative. Since then, we've received a lot of feedback 
from my colleagues, and stakeholders--many of which are in this 
very room. I'm glad to see such strong interest in working 
together to get this bill right and better serve the patients 
in need of our help.
    So, in that spirit of cooperation and collaboration, I want 
to stress we all agree on the goals of the ACE Kids Act--
improving care coordination within a state, ensuring access to 
care across state lines, and ensuring we are leveraging data to 
target interventions. But each of us also wants to ensure that 
any targeted improvements actually fix what is broken by 
building on what is working--without disrupting proven, 
successful models of care that help kids within the program 
today.
    We want to do everything we can to ensure we enhance care, 
and protect choices within the program.
    That's why we have our witnesses before us today. We need 
their feedback and insights to better understand the challenges 
this population of children faces within the Medicaid program 
today.
    We also want to hear from folks not on the panel. Whether 
it's managed care plans, individual Medicaid directors, 
physicians, nurses, children's health advocates, or others--we 
invite them to continue to share their insights and ideas about 
how we can tailor solutions to improve care for children.
    We want to better understand what's working and also what 
opportunities exist for bipartisan improvements to give 
beneficiaries, states, plans, and providers more tools to 
design solutions that best serve these kids.
    I yield the balance of my time to the Vice Chairman of the 
full committee, Ms. Blackburn.

    Mr. Pitts. The chair thanks the gentleman and now recognize 
the ranking member of the full committee, Mr. Pallone, for an 
opening statement.

OPENING STATEMENT OF HON. FRANK PALLONE, JR., A REPRESENTATIVE 
            IN CONGRESS FROM THE STATE OF NEW JERSEY

    Mr. Pallone. Thank you, Mr. Chairman, and thanks to our 
witnesses for being here today. Few programs are as critical to 
the wellbeing of our nation's citizens as Medicaid.
    For over 50 years, the Medicaid program has provided 
comprehensive health care coverage to America's most vulnerable 
populations and while our hearing today is specifically about 
medically complex children in Medicaid, I urge my colleagues 
not to forget the important role that Medicaid plays broadly 
for children in this country. Medicaid finances more than 50 
percent of all births in this country and provides more than 
one in three children with the chance at a healthy start in 
life.
    In 2015, the Medicaid and CHIP programs together covered 
more than 45 million children, and children with complex 
medical needs includes a very special subset of children in the 
Medicaid program.
    These children typically have chronic multi-system diseases 
and demand intensive care and that is why Medicaid is 
particularly crucial for their families under the Medicaid and 
CHIP.
    Children with complex medical conditions receive a broad 
set of services that in many instances private insurance won't 
cover. It's not an overstatement to say that Medicaid is 
lifesaving to these children and provides a financial lifeline 
for their families that struggle with insurmountable medical 
expenses.
    However, families and stakeholders agree that there are 
several issues related to treatment for this population that 
must be addressed. For example, many children with complex 
medical conditions travel nationwide for care and report 
significant difficulty coordinating care across state lines and 
across many state Medicaid programs.
    They need care that is family centered and is based on 
comprehensive quality data that is simply not available 
nationally for this specialized population of Medicaid.
    H.R. 546, the Advancing Care for Exception Kids Act, known 
as the ACE Kids Act, aims to address these shortfalls, to 
revise discussions that are being examined today tries to 
incorporate some of the feedback we have received to date from 
stakeholder.
    The new draft gives states the option to establish health 
homes geared towards the treatment of children with complex 
medical conditions and includes two years of enhanced payments 
to states to help with implementation.
    The draft also requires increased quality reporting, 
transparency regarding payment across state lines and guidance 
from the Centers for Medicare and Medicaid Services to states 
on best practices for payments across state lines.
    So I want to thank my colleagues, Representatives Castro 
and Barton, for championing this legislation for many 
Congresses and building extensive bipartisan support for such 
an important issue.
    The discussion draft under consideration is just that, a 
draft for discussion. But I look forward to comments from 
stakeholders including our witnesses today and I hope that we 
can continue working in a bipartisan fashion, moving forward to 
take a positive step forward for medically complex kids in the 
Medicaid program.
    And most importantly, I'm glad we share the common goal of 
ensuring that these children receive the best possible 
treatment. I yield back.
    Mr. Pitts. Chair thanks the gentleman.
    As usual, all members' written opening statements will be 
made a part of the record. That concludes our opening 
statements.
    We will now go to our panel of witnesses. We have one panel 
with six witnesses today and I will introduce them in the order 
of their presentations.
    First, Dr. Jay Berry, M.D., MPH, Assistant Professor for 
Pediatrics, Harvard Medical School, and Mr. Matt Salo, 
Executive Director, National Association of Medicaid Directors.
    Then Ms. Maria Isabel Frangenberg, Project Coordinator, 
Family Voices. Then Ms. Tish West, parent of a child with 
medically complex conditions. Then Dr. Steven Koop, M.D., 
Medical Director, Gillette Children's Specialty Health Care, 
and finally Mr. Rick Merrill, President and Chief Executive 
Officer of Cook Children's Health System.
    Thank you for coming today. Your written testimony will be 
made a part of the record. You will each be given 5 minutes to 
summarize your testimony. There is a system of lights on your 
table.
    I think after four minutes the yellow should come and then 
finally after 5 minutes the red. So we ask if you would respect 
that, and we thank you for coming today.
    We, at this point, will recognize Dr. Jay Berry for your 
opening summary--5 minutes.

 STATEMENTS OF JAY G. BERRY, M.D., M.P.H., ASSISTANT PROFESSOR 
  OF PEDIATRICS, HARVARD MEDICAL SCHOOL; MATT SALO, EXECUTIVE 
  DIRECTOR, NATIONAL ASSOCIATION OF MEDICAID DIRECTORS; MARIA 
 ISABEL FRANGENBERG, PROJECT COORDINATOR, FAMILY VOICES; TISH 
  WEST, PARENT OF A CHILD WITH MEDICALLY COMPLEX CONDITIONS; 
   STEVEN KOOP, M.D., MEDICAL DIRECTOR, GILLETTE CHILDREN'S 
  SPECIALTY HEALTHCARE; RICK W. MERRILL, PRESIDENT AND CHIEF 
        EXECUTIVE OFFICER, COOK CHILDREN'S HEALTH SYSTEM

            STATEMENT OF JAY G. BERRY, M.D., M.P.H.

    Dr. Berry. Thank you, Mr. Chairman, Mr. Barton, Ms. Castor, 
committee members and staff for prioritizing today's discussion 
on children with medical complexity for giving us here the 
opportunity to share our experiences and perceptions caring for 
these children and for taking a step far with legislation to 
optimize a system of care for them. It is a dream come true to 
be talking with you guys about these children today.
    I am a general pediatrician. I have a decade of experience 
working a clinic and a hospital-based team dedicated 
exclusively to caring for children with medical complexity.
    I am also a health services researcher who has been trained 
to use health administrative claims data to identify this 
population of children and to assess their health care resource 
use and their outcomes.
    When I think of children with medical complexity, I think 
of children that have a lifelong chronic condition that most 
often is incurable it's so severe that it affects multiple 
organ systems of the body.
    It also significantly impairs the functioning of the 
children, their ability to eat, to drink, to digest food, to 
breathe, to walk and talk independently.
    These children have a variety of health care needs. It's 
not uncommon for them to be on dozens of medications, lots of 
durable medical equipment and to have 20 or more providers 
taking care of them across continuum from primary care, 
specialty care, social workers, surgeons, home nurses, school 
nurses, et cetera.
    The prevalence of this population of children is small. At 
most, they account for a few percent of all children. But their 
impact on the system is quite large where they account for 30 
or 40 percent of total spending, especially in Medicaid.
    The balance of their health care spending is also 
interesting, where about half of it, we think, is going to 
hospital care but a vast minority of it, 2 to 3 percent or so, 
is going to primary care, community care and home care.
    For the current state of health affairs for these children, 
too many of them have unmet health care needs. Many of them 
can't find local pediatricians and other clinicians who are 
willing to help them, especially with urgent care matters.
    Often, many of them have to travel great distances for 
specialty care even outside of their state and some are stuck 
without a provider truly owning their care.
    This impacts the children. They are getting sick too often 
and they are relying on the emergency department in the 
hospital too much for their health crises. Their parents have 
limited support in their home.
    Many parents are running many hospitals in their home, 
trying to care for their children and they are experiencing 
immense caregiving time and effort which can result in loss of 
employment, marital and family discord, and emotional distress.
    It's just hard to take care of these kids. It's time 
consuming. It takes a lot of people to do it. No one clinician 
or one clinic can do it all.
    It takes a lot of brain power. It's emotionally taxing, 
especially just riding along with the families as they are 
experiencing unbelievably dire health circumstances.
    It's often not financially attractive. The providers for 
these children, as we've talked about, are geographically 
dispersed. It's hard sometimes to hold them accountable for 
what they are doing and the health data are just not 
forthcoming enough to really identify best practices for these 
children.
    So I couldn't be more excited about federal legislation in 
health care policy that can help these kids. Anything that 
could help redirect and stabilize health care spending for them 
into the primary community and home care world that could 
institute accountability and governance across all the 
providers caring for them that could improve their 
accessibility of care especially across state lines and could 
optimize the Medicaid data that we have, making it more 
reliable, standardized and useful to measure the quality of 
care for these children and identify best practices.
    Thank you so much for having me here today. I will be happy 
to answer any questions for you after the other testimonies. 
Thank you so much.
    [The prepared statement of Jay G. Berry follows:]
    
    
    
    
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    Mr. Pitts. The chair thanks the gentleman. No one has their 
mic switch on, do they.
    So staff is working on it and I apologize for the VA 
system. At this point, I'll recognize Mr. Matt Salo for 5 
minutes for your summary.

                     STATEMENT OF MATT SALO

    Mr. Salo. Thank you, Mr. Chairman.
    Chairman Pitts, Ranking Member Green, members of the 
committee. My name is Matt Salo and I'm the executive director 
of the National Association of Medicaid Directors and I too 
appreciate the opportunity to testify before you today about 
our efforts and our collective efforts to improve the health 
care delivery system for all Medicaid patients but especially 
the system for children with medically complex conditions and 
we very much appreciate your hard work and your leadership to 
help us help the children and the families who rely on 
Medicaid.
    And so on behalf of the Medicaid administrators and all 56 
of the states and territories, we support the primary goals of 
H.R. 546 of improving the coordination of care for kids to 
address problems with fragmentation and uncoordinated care, to 
think about how these issues work across state lines and very 
much to relook and to examine the data on quality issues, on 
clinical issues underlying how the health care system treats or 
fails to adequately treat these populations.
    Now, I am not a doctor but I have spent 22 years working on 
behalf of state Medicaid agencies and governors in the Medicaid 
space and so what I do know is that while the Medicaid programs 
across the country do look very different from one another. The 
commonality or the common theme and thread amongst the Medicaid 
directors is a deep commitment and passion for trying to 
improve the health care system, trying to improve the quality 
and efficiency of services that we provide and improving the 
overall patient experiences for all of the 72 million 
beneficiaries who rely on Medicaid.
    And I can report that every state is aggressively working 
on multiple efforts to redesign the fragmented delivery silos 
and to reorient the misplaced financial incentives that are 
legion throughout the rest of the U.S. healthcare system.
    These efforts take many forms, and I'm happy to go into 
some of the details later. But suffice to say that we are 
looking to try to do this on behalf of kids with medically 
complex conditions, on behalf of adults with physical 
disabilities, on behalf of frail seniors who are duly eligible 
for Medicare and for Medicaid, and that each of these efforts 
is undertaken in close partnership with patients, with 
providers, with family members and, of course, with our 
partners at the Centers for Medicaid and CHIP services.
    And as Mr. Pallone said, I think it's important to note, 
that many of the kids with medical complex conditions in 
Medicaid are there not because they are poor, not because they 
are on Medicaid, but let's face it, because the broader U.S. 
health care system has failed to adequately address their needs 
and they have ended up on Medicaid because of the cost or the 
failure of the broader system and that is what we are really 
trying to fix.
    Now, clearly, challenges remain and I appreciate that 
that's what we are trying to do here is to talk about how do we 
effectively overcome some of those challenges and, again, this 
is the beginning of a discussion.
    We very much want to be part of this discussion and we want 
to see something happen that can actually improve the care and 
the coordination of that care in the field.
    One important point I would make, though, is that the key 
to long-term lasting success in this area and other areas is 
that we ensure that we have a broad alignment of purpose, 
organization and implementation of these reforms.
    The core components of the failed health care system that 
we are moving away from includes fragmentation, delivery silos 
and financial incentives that simply do not reward improved 
health outcomes.
    And again, while the patient populations that we serve in 
Medicaid may look very different from one another, it is 
critical to our long-term efforts that we avoid defaulting back 
into fragmentation.
    And I appreciate Chairman Barton talked about wanting to 
move away from a facility-based view of the world and more 
towards a family and community-based view. So the components 
here I think are really important, looking at a health home 
model as an option for states.
    This is a logical and sensible step for many states. This 
is an approach that is known to us. It is known to providers.
    It is known to stakeholders and I think the availability of 
the enhanced match can go a long way towards providing the 
right incentives to take this up but also really to provide the 
adequate infrastructure that's needed to make these things 
sustainable.
    And then, finally, and I'm happy to talk much more about 
this later. But the idea of creating, compiling, and sharing 
best practices is critically important.
    There is no currency in Medicaid quite like the fact that 
something has succeeded in a state and the ability of one state 
to say, we have done this and we have made this work in 
Medicaid is an enormously compelling statement for their 
colleagues and so we want to work with that.
    And so I probably have much more to say but I will stop 
there because I am over my time.
    Thank you.
    [The prepared statement of Matt Salo follows:]
    
    
    
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    Mr. Pitts. Chair thanks the gentleman and now recognized 
Ms. Frangenberg 5 minutes for your summary.

             STATEMENT OF MARIA ISABEL FRANGENBERG

    Ms. Frangenberg. Thank you, Mr. Chairman, Mr. Ranking 
Member and members of the committee. Thank you very much for 
allowing me to testify today.
    My name is Maria Isabel Frangenberg, and I am a Project 
Coordinator for Family Voices, which is a national nonprofit 
organization of and for families of children and youth with 
special health care needs.
    Prior to working with Family Voices, I served as a Latino 
community liaison for the Virginia Family to Family Health 
Information Center.
    Family to Family Health Information Center, or F to F, are 
the statewide federally funded centers that help parents of 
children with special health care needs to navigate the health 
care system.
    As we know, one in five families with children have at 
least one child with special health care needs and children, as 
you have mentioned before, children with complex medical 
conditions are a subset of children with special health care 
needs.
    These children may see multiple providers on a regular 
basis and therefore care coordination is of the essence. In 
addition, many of these children, as you have mentioned, need 
highly specialized care from several different providers across 
state lines.
    Medicaid doesn't always provide the necessary care 
coordination and access to out-of-state is often very 
difficult. The ACE Kids Act addresses some of these barriers 
and we at Family Voices fully support its goals.
    So through my work many families from diverse backgrounds 
have told me their stories about their need to get medically 
necessary and culturally and linguistically competent and 
appropriate care for their children.
    Medicaid can be a lifesaver for children and families both 
literally and figuratively. So let me tell you Cindy's story. 
Cindy is a mother from Indiana and she told us that her family 
went from two incomes to one when she left work to care for her 
newborn daughter, Rebecca, who was born with multiple 
disabilities and health care conditions.
    Even with private insurance they were paying over $12,000 
per year in pharmaceutical, medical equipment, expenses, 
deductibles, specialists, out of pocket travel expenses and 
other noncovered items.
    However, since Rebecca has been on Medicaid their lives 
have changed. They have paid of medical debt and are even 
saving for college for their own two children. They peace of 
mind knowing that they won't have to go into debt to provide 
for Rebecca's complex medical needs.
    So Cindy's story is, clearly, a Medicaid success story and 
the reason that we are here today committed to building on that 
success and improving access to its critical supports for 
families.
    However, access to Medicaid services is not always that 
smooth and a complication for some families is the failure of 
Medicaid agencies to provide written and oral communications in 
the language of the child's family when that language is not 
English.
    Rosa from Massachusetts, whose son has Down Syndrome, told 
me that she must wait weeks for Medicaid correspondence to be 
translated into her language and days to speak to an agency 
representative in Spanish.
    Another example of barriers to accessing Medicaid services 
came from Beth, a mother from North Dakota. Beth is a widow who 
is raising two children with a rare and extremely painful and 
incurable pancreatic condition, the same disease from which her 
husband died.
    Because of their extreme pain and the medications used to 
treat it, the children have severe behavioral side effects. The 
children's mental health providers and the medical providers 
don't talk to each other. So there is no care coordination, and 
Beth is left to connect all the dots on her own.
    What is worse, her son's medical providers have accused her 
of child neglect when Beth withheld pain medication following 
the advice of her son's mental health provider.
    Adding to her worries, Beth's full time salary is not 
enough to cover all of her children's expenses. In a strange 
twist of fate, her daughter lost her Medicaid waiver for lack 
of use, really a reason that has Beth befuddled. Her son has 
not qualified for Medicaid because of the income that he 
receives from his father's death benefits.
    But Beth is hopeful that some of these system issues will 
be resolved to improve the coordination of care for her 
children and reduce her financial and emotional burdens.
    The ACE Kids Act would help to address such problems with 
care coordination as well as barriers to getting care out of 
state. Our written testimony provides several recommendations 
that would improve the bill.
    Among these we recommend that the administrator of CMS be 
required to establish clear standards to ensure the quality of 
health home services for children with complex medical 
conditions.
    We also believe that it is critical that the administrator, 
the states and health home providers meaningfully engage 
families in the development and implementation of health home 
services.
    And here I wish to acknowledge the outstanding work of the 
Maternal and Child Health Bureau for their long-time commitment 
to engage in the diverse constituents that they serve as full 
partners at all levels of health care.
    Very active engagement has had a profound impact on 
appropriately meeting the needs of families and their 
communities. Let me get back to Beth really quickly, the mom 
from North Dakota.
    When we were finishing our conversation she paused and she 
said, you know, I'm really grateful that somebody is listening 
to me. That was truly humbling.
    So I think that we can agree that we can work harder to 
give families like Beth's better reasons to be grateful.
    [The prepared statement of Maria Isabel Frangenberg 
follows:]


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    Mr. Pitts. The chair thanks the gentlelady and now 
recognizes Ms. West for 5 minutes for her summary.

                     STATEMENT OF TISH WEST

    Ms. West. Thank you. My name is Tish West and I am the 
mother of Caroline West.
    On behalf of my daughter and the millions of medically 
complex children in Florida and across the country I want to 
thank all of you for devoting your time to discuss how we can 
better serve the most medically vulnerable children in our 
country.
    I would particularly like to thank Congresswoman Kathy 
Castor, our longtime champion and original sponsor of the bill. 
I would also like to thank Congressman Gus Bilirakis, another 
Tampa Bay member who cares deeply about this issue. 
Additionally, I'd like to thank Ranking Member Frank Pallone, 
who travelled to Tampa to see the Chronic Complex Clinic where 
Caroline and nearly a thousand other children receive 
lifesaving care at St. Joseph's Children's Hospital. Chairman 
Upton, Pitts, Ranking Members Green and Pallone and the entire 
subcommittee, I am deeply honored to be here today.
    Our daughter, Caroline, is 19 years of age. She has a rare 
neurological condition that affects approximately 800 people 
worldwide. Her condition affects every aspect of her life. She 
has seizures. She is fed by a tube into her stomach.
    She is confined to a wheelchair. She is developmentally 
delayed. She has cerebral palsy. She has been hospitalized for 
full spinal fusion, chronic pneumonia and seizures that have 
lasted as long as 12 hours.
    She is currently on seizure meds that she takes three times 
a day, has physical and speech therapy, is on a specialized 
diet to control seizures.
    Caroline's care is extremely rigorous. She needs my support 
for every aspect of her life and it takes 29 different 
specialty care providers to maintain her health and welfare.
    Before Caroline was born, I was working in an executive job 
and was on an advanced promotion career track. As is the case 
with most parents of medically complex children, I did not have 
the luxury of continuing to work.
    Since we did not have a diagnosis, we were busy visiting 
doctors, running tests to identify her illness. The first step 
in treatment is diagnosis.
    This diagnostic process took us across the country to 
hospitals like Boston Children's and Johns Hopkins and others. 
All of this travel and testing was funded personally. Insurance 
would not cover our expenses.
    During this time, our family was under an enormous amount 
of stress, both emotionally and financially. I had just left a 
high-paying job. We were paying out of pocket for travel. We 
paid out of pocket for expensive medicines that were not 
covered. Many of her necessary therapies were not covered.
    These expensive tests at out of state hospitals were not 
covered and we had been denied by Florida's Medicaid waiver 
program. Our family was also in an emotional crisis. We were 
unprepared for the isolation that having a child with 
disabilities presents.
    Since all of my friends were primarily my past coworkers, I 
did not have a strong support system. We were navigating 
uncharted territory alone. A medical home for complex kids is a 
rarity.
    We know firsthand. Caroline's first pediatrician was a 
highly educated individual that we respected greatly. However, 
he was not experienced in dealing with kids with chronic and 
complex illness. We were an unusual sight in his office and did 
not always feel comfortable visiting the doctor.
    Our questions would often go unanswered. We were a puzzle 
to our doctors. We were visiting many specialty doctors and had 
a difficult time getting the doctors to consult with each 
other.
    There was an occasion in the diagnostic process where we 
actually had to be admitted to the hospital just to get our 
various providers to talk with each other. After years of 
bouncing around with doctors, we learned about a new clinic, 
the Chronic Complex Clinic at St. Joseph's Children's Hospital 
of Tampa.
    Moving to this clinic was a lifesaving event for our 
family. All 800 patients of this clinic are categorized at the 
highest level of complexity. The clinic is co-located on the 
campus of St. Joseph's Children's Hospital with every 
subspecialty on the same floor.
    The doctors in the clinic are also hospitalists, which 
means that if Caroline is admitted into the hospital she will 
see the exact same doctors that she sees as an in-patient and 
they in turn will be familiar with her. All the doctors that we 
see know Caroline and understand her condition. This structure 
is a true medical home.
    This means faster treatment, less time in the hospital and 
better outcomes. We are the norm at our clinic. We are not 
outliers. Since coming to the clinic, Caroline's health has 
improved and her hospitalizations have been reduced.
    As you review ways to deliver medicine to children with 
chronic and complex issues, I would urge you to look closely at 
this clinic.
    The criteria that you put in place for ACE Kids needs 
ensure that these medical homes are for the most medically 
complex and that the institutions like St. Joseph's Hospital 
have all the resources to support this approach to care. 
Diluting this care to every pediatrician would not accomplish 
the outcomes that we have experienced through this model.
    We were finally approved for the medical waiver program. 
This allowed us to augment our private insurance with Medicaid. 
This was a lifesaver for us.
    We are hard workers and have always believed in taking care 
of ourselves and not relying on the welfare of others. We never 
imagined that we would need a government program to take care 
of one of our children. However, I am grateful for the program.
    Lastly, I am not here testifying just for myself and my 
daughter. I am here for the thousands of families that are not 
able to speak for themselves. This legislation is urgently 
needed.
    Thank you.
    [The prepared statement of Tish West follows:]
    
    
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    Mr. Pitts. The chair thanks the gentlelady and now 
recognizes Dr. Koop 5 minutes for your summary.

                 STATEMENT OF STEVEN KOOP, M.D.

    Dr. Koop. Good morning. I am Steven Koop. I am a pediatric 
orthopaedic surgeon. I also serve as the medical director at 
Gillette Children's Specialty Health Care.
    Gillette is an independent nonprofit specialty hospital in 
St. Paul, Minnesota. Thank you for allowing me to testify.
    Your efforts to improve Medicaid coverage for the children 
that you have heard about today is very important to them, to 
their families and to those who care for them.
    Today, I hope to make the following points. First, we 
appreciate the approach of the new discussion draft of the ACE 
Kids Act. Second, we believe it is critical to protect patient 
access to skilled specialty care.
    And third, it is important that we work together to gather 
data and best practices so that we can inform and improve the 
system that serves these children and their families.
    Gillette was established in 1897 to serve children with 
disabilities. That is still our mission today. In the past 5 
years, we have served patients from all 50 states plus the 
District of Columbia, Puerto Rico and more than 20 countries.
    The children we have today, the children we serve, have 
conditions such as cerebral palsy, spina bifida and a long list 
of very complex conditions.
    Gillette's patients include some of the most medically 
fragile children, children who require lifelong care 
coordination and multiple medical and surgical interventions so 
that they can thrive and reach their full potential.
    At Gillette, we have made the conscious decision to build 
an integrated care model that focuses on delivering high 
quality and effective care to narrow segment of the population. 
In doing so, we have learned key elements of serving our 
patients to the best of our ability.
    First and foremost, patients and families must be at the 
center of our collective work. Why? Because parents and family 
members become the first experts in their child's unique 
condition.
    As a physician, I have learned to recognize and value this 
expertise. Moms like Tish West have become my best teachers 
over my 31 years of work.
    When a child is born with a medically complex condition or 
experiences serious injuries, as you have just heard, the life 
and finances of a family are transformed. I do not think it's 
necessary to say more about the challenges of Medicaid and 
accessing this essential funding for their care.
    We are encouraged by the new draft discussion of the ACE 
Kids Act that is the subject of today's hearing. We believe it 
moves in a positive direction for the following reasons. It 
places children and families at the center and builds around 
them. A state option to provide coordinated care through a 
health home for children who have complex medical conditions is 
key to achieving the goals of the ACE Kids Act.
    New models should respond to the needs of children and 
their families, should include data reports that will improve 
care for children now and in the future, should allow families 
to make choices amongst providers and it should ensure access 
to the providers who are most appropriate for that child.
    Secondly, it pursues facts and information that will 
improve our understanding of medically complex children. We 
believe any effort to improve Medicaid for children with 
medical complexity must be data driven.
    The provision requiring a study of children with medical 
complexity will increase our knowledge of the children and what 
they and their families experience, the models of care that 
serve them well.
    Third, it encourages sharing of knowledge that will improve 
care for all exceptional children. The concept of an agency 
such as CMS providing guidance to state medical directors 
regarding best practices provides an opportunity to highlight 
what works, thereby helping to improve the care that children 
receive across the entire nation.
    Additional and more detailed comments and recommendations 
with respect to the discussion draft, the story of Gillette 
Children's and our work and stories of the patients that we 
serve are included in our written testimony.
    I thank the original sponsors of the ACE Kids Act, 
particularly Congressman Barton and Congresswoman Castor, for 
their leadership in this bipartisan effort.
    Thank you, Chairman Pitts and Ranking Member Green, for 
allowing me to speak today.
    [The prepared statement of Steven Koop, M.D. follows:]
    
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    Mr. Pitts. Chair thanks the gentleman and now recognizes 
Mr. Merrill 5 minutes for your summary.

                  STATEMENT OF RICK W. MERRILL

    Mr. Merrill. Well, good morning. Good morning. I'm Rick 
Merrill, president and chief executive officer of Cook 
Children's Health Care System, a not for profit integrated 
pediatric health care system located in Fort Worth, Texas.
    I am very glad to be here with you today representing 
children's hospitals nationwide to discuss the Advancing Care 
for Exception Kids Act, H.R. 546 and the discussion draft.
    I wish to thank the original co-sponsors of the ACE Kids 
Act, Chairman Joe Barton and Representative Kathy Castor, whose 
leadership has galvanized strong bipartisan support for the 
bill from over 200 of their House colleagues.
    We would also like to thank Energy and Commerce Committee 
Chairman Fred Upton and Ranking Member Frank Pallone and the 
Health Subcommittee chairman, Joe Pitts, of course, and Ranking 
Member Gene Green for holding this hearing on improving care 
for children with very serious complex medical conditions.
    We would also like to express our appreciation to 
Representative Michael Burgess and more than a dozen additional 
members of the subcommittee for their support of the bill.
    Additionally, it is important to acknowledge the thoughtful 
input offered on the current bill by other organizations 
present and we look forward to continuing to work with these 
groups as the bill moves forward.
    Last year, Cook Children's treated children from more than 
30 states, recorded nearly a half million child visits in our 
60 pediatric subspecialty clinics, 240,000 visits to our 
emergency department and urgent care centers and registered 
over 11,000 in-patient admissions.
    With over 1.3 million patient encounters in our system, 
Cook Children's provides comprehensive and coordinated care 
across this system including home health care services and a 
health plan which enrolls over 100,000 Medicaid children, many 
of whom have serious disabilities.
    For many years now, we've taken care of some very sick kids 
and we've done a good job of it in our part of Texas. But I'm 
here today to tell you we could and should do better. As a 
nation, we have an obligation to improve care for our sickest, 
most vulnerable children who have complex medical conditions 
and who largely depend on Medicaid for their health care.
    We do our best today working with our Medicaid program but 
we can do much better. While Medicaid is state-based, the 
children we serve are not necessarily locally based.
    As I mentioned, many of the patients travel great distances 
across state lines for our specialized care. But right now, we 
have no national data to accelerate best practice and quality 
improvement work and no national quality standards to assess if 
we're doing a better job.
    These essential elements of improvement in service and care 
cannot be achieved without changes in Medicaid. Thankfully, we 
have seen great strides in the improvement of care in the adult 
Medicare population that has been made possible through 
national data and national standards informing best practices 
and better care.
    Don't we want the same for children with serious health 
care needs? As it has been stated, the number of these children 
with medical complexity is a small number, perhaps 6 percent of 
the children on Medicaid.
    The group accounts for 40 percent of the Medicaid's current 
spend on kids yet each year the number of children with 
multiple life-threatening disabilities grows.
    Over the coming decade, the 2 million children with medical 
complexity in Medicaid will greatly increase in numbers at the 
current growth rate of 5 percent or more, and the $30 billion 
to $40 billion we incur yearly in Medicaid costs for this 
population will increase even more rapidly given medical 
inflation rates. By strengthening Medicaid to improve 
coordinated care for this population we can reduce spending 
potentially by billions of dollars over a multiyear period by 
decreasing unnecessary utilization of costly services.
    Working together we can achieve the delivery reform 
required to strengthen Medicaid for these children. Passing the 
ACE Kids Act is key to this effort.
    Meaningful reform cannot be accomplished by 50 different 
Medicaid programs working independently. A national approach is 
needed to create consistent systems of coordinated care across 
states using common definitions and transparency of data, 
driving care improvement and reducing Medicaid spending.
    The ACE Kids Act would be voluntary for states as well as 
families and health care providers and can be implemented 
locally around the needs of the families, state Medicaid 
managed plans, and health care providers.
    We have these kinds of partnerships in place in several 
communities across the country, mine included, and they are 
achieving great results for children locally.
    With a strong framework in place, states, health plans, 
families, and providers can work together to improve care for 
our nation's sickest and most vulnerable children.
    On behalf of the children's hospitals and the thousands of 
children and families served by Cook Children's, we look 
forward to continuing our work with the bill's champions in 
Congress to advance solutions that improve care for these kids.
    Thank you.
    [The prepared statement of Rick W. Merrill follows:]
    
    
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    Mr. Pitts. Chair thanks the gentleman. That concludes the 
opening statements.
    I have a UC request. I would like to submit the following 
documents for the record: statements from the American College 
of Cardiology, the Cooley's Anemia Foundation, three letters 
from Medicaid Health Plans of America, a statement from the 
Seattle Children's Hospital.
    Without objection, those will be entered into the record.
    [The information appears at the conclusion of the hearing.]
    We are going to take a 5-minute break to let the staff 
reset the mics. They say that way we can get rid of this static 
and feedback. So, with your indulgence, we will break for 5 
minutes.
    [Whereupon, the above-mentioned matter recessed at 11:08 
a.m. and resumed at 11:17 a.m.]
    Mr. Pitts. OK, ladies and gentlemen. If you'll take your 
seats we'll get started. I apologize for this. That's a little 
better, I think.
    Mr. Green. Appreciate help from our friends.
    Mr. Pitts. Yes. So thank you very much for your patience. 
We'll now go to questioning. I will begin the questioning and 
recognize myself 5 minutes for that purpose and we'll start 
with you, Dr. Berry.
    In your testimony you wrote a bit about your research and 
some of the challenges with defining the population of children 
with medical complexity.
    Can you explain please the definitional challenges and is 
it fair to say many definitions risk being simplistic or one 
size fits all and would you have concerns with Congress 
mandating a single definition and writing it in federal 
statute?
    Dr. Berry. Thank you, Mr. Chairman, for that complicated 
question. So, complexity really is a subject term, right. It's 
kind of in the eye of the beholder who's trying to make a 
judgment about it with a patient in front of him.
     And, there are very specific ways at going about a 
definition and then more broad ways. So, for instance, in our 
clinic and other complex care clinics we have a very general 
definition.
    The kids have to have a chronic condition, it's got to 
affect multiple organ systems of the body--at least three, we 
say. They have to have functional limitations and that's about 
it, and we get referrals every week from providers all over New 
England sending us kids, with that definition in place.
    We have no specific diagnoses. We have no specific 
medications or anything else they need. It's just that, and the 
kids are coming.
    So I think from the clinical provider standpoint, even a 
more generic definition like that it actually works for a 
clinical program to get the kids what they need.
    Now, when you're trying to carve out the data I think 
that's when the definitions become a little bit more 
challenging but you can definitely do it. Then you're arguing 
in the fringes about what specific diseases are in or out or a 
number of chronic conditions and all that kind of stuff.
    But, themes and variations on that, no matter how strict 
you get you're going to be able to identify that core set of 
kids, I believe, regardless of the specifics. They could really 
benefit from legislation like this, and over time you may 
revise it and do things in the fringes but you really are going 
to be able to get that core set of kids in there.
    Mr. Pitts. OK. Thank you.
    Dr. Koop, does Gillette serve children enrolled in Medicaid 
managed care plans and if so can you discuss how you work with 
those plans to coordinate care for these children?
    Dr. Koop. We do. Those plans often have individuals who 
communicate with us about the resources that they have and how 
we're going to coordinate care. We place a particular emphasis 
on working with the primary care physicians for our patients. 
We want them to be connected to the primary care community. We 
live in a reasonably rural part of the U.S. and many of our 
patients travel long distances so that constant communication 
and collaboration is essential.
    Mr. Pitts. Thank you.
    Mr. Salo, I know one of the concerns Medicaid directors had 
with the original ACE Kids Act is that it upset the balance of 
the federal-state nature of the Medicaid and may have given too 
much authority to CMS instead of states.
    How do Medicaid directors feel about this new draft and 
knowing managed care is an important delivery system to many 
states like Michigan? Do directors feel like the draft overly 
incentivizes fee for service?
    Mr. Salo. I think, and granted that the draft has only 
been, I think, on the street for about a week or so so I can't 
promise that all 56 of my members have looked at it and weighed 
in it, but I can say with broad confidence that the concepts 
behind the new draft are very much in keeping with the 
direction that states are going because, as I alluded to 
earlier there are a lot--states are very different from one 
another.
    The reforms in Pennsylvania versus the reforms in Texas on 
one level look very different. So it's important that whatever 
we do moving forward is able to accommodate that and so by that 
I mean you do have a number of states who are moving forward in 
kind of a traditional managed care organization reform model.
    But you also have a number of states moving forward with 
accountable care organizations or in a number of states like 
Oregon and Colorado and others they even call them other 
things.
    There's RCOs and CCOs and endless acronympalooza there. But 
this type of approach, the health home approach, is something 
that can be blended into a more traditional managed care 
approach.
    It can be blended in with the ACOs and it can be used in 
places like Arkansas where there is no real managed care 
infrastructure at all.
    Mr. Pitts. Thank you. Let me sneak one more question in.
    Mr. Merrill, in your testimony you noted we lack national 
quality measures tailored to the unique needs of children with 
medical complexity.
    Yet, I assume your health care plan, which has more than 
100,000 children enrolled reports to the state of Texas on 
quality measures and as your testimony suggests there are major 
challenges with accurately defining the diverse population.
    So is putting the car before the horse--is it putting the 
cart before the horse to try to create new quality metrics for 
this population? Why do you think current metrics are 
sufficient?
    Mr. Merrill. Great question, Mr. Chairman.
    We do have quality measures and a lot of health plans 
across the nation have quality measures that they are expected 
to hold to.
    But that said, they are quality measures that are specific 
to our health plan and to our state, and if we want to try and 
accelerate our opportunity to improve care sooner than later 
for this patient population and create the budget certainty and 
potential savings that this bill has or this resolution has in 
mind, we need a common definition.
    We need common standards and that is why we need to get 
also to a common definition of who these patients are. We need 
a common denominator and a common language that tethers all of 
this effort across all of the states together so that we can 
use that common language to accelerate the improvement in care 
for these patients and ultimately the budget certainty and 
savings that this contemplates.
    Mr. Pitts. The chair thanks the gentleman. I have gone way 
over my time. The chair recognizes Ranking Member Mr. Green 5 
minutes for questions.
    Mr. Green. Thank you, Mr. Chairman.
    Ms. West, I want to thank you for your incredible moving 
and illustrative story of what you've shared with us today. No 
doubt in my mind that the care your daughter has received at 
St. Joseph's in Florida has been lifesaving and life changing 
for both your daughter and your family.
    What elements of St. Joseph's model do you think are most 
critical to the success of your child?
    Ms. West. I think one of the great things is that the 
clinic itself is adjacent to the hospital. So if additional 
tests are needed when we go into the clinic we can just go 
right over to the hospital for x-rays right away or any other 
kind of testing.
    Secondly, I think having the subspecialties co-located with 
the clinic is really important. We've had situations where we 
were in our clinic with our primary pediatrician and the doctor 
was confused about something that was going on with Caroline 
and they walked over to talk with the GI doctor, consulted and 
then came back and we made a decision together--the two 
doctors.
    Mr. Green. OK. Is Florida in a managed care Medicaid 
program? Does Florida have----
    Ms. West. Yes.
    Mr. Green. And is St. Joseph's Hospital on that managed 
care?
    Ms. West. Yes. Don't ask me too many specific details about 
how the funding works for the hospital.
    Mr. Green. OK. Well, I'm just wondering because I've had 
issues for a long time that managed care may only cover certain 
facilities in certain areas and in Houston, for example, I 
asked my managed care folks you need to cover a general 
hospital in a medical center--Texas Children's and MD Anderson, 
because then you really are a health care provider because you 
cover those things.
    And so that's why I hope that managed care, whether it be 
in Florida or Texas, would do the same thing.
    Dr. Merrill, is Cook on the Texas managed care Medicaid 
program?
    Mr. Merrill. Yes, Representative Green, we are, and in fact 
as you may remember or recall or know, the state of Texas is 
trying to, like many states, find ways to better coordinate 
care for this population.
    We just launched Star Kids, which is similar to ACE Kids. 
But, again, it's just one solution for the nation. But yes, we 
do participate with our health plan in Medicaid managed care.
    Mr. Green. Well, and our next question is is it across 
state lines? Because I know Cook brings folks from Oklahoma and 
everywhere else just like Texas Children's in Houston does. 
That's the main issue we have to deal with, how we can do that, 
and it's going to take federal rules to do it because Louisiana 
is so different from Texas and Medicaid just like Oklahoma, I'm 
sure, is.
    But Dr. Berry, one thing that struck me as we were 
listening to our witnesses here today is how complex is it to 
coordinate across those lines in Medicaid. People often say 
you've seen one Medicaid program you've seen them all. But that 
is just not the case because of the differences. I found that 
out when we had a lot of our evacuees come into the Houston 
area--I'm sure in the Dallas area from Louisiana and Katrina.
    The Medicaid program in Louisiana was so different from 
what we were accustomed to in Texas. The same state innovation 
and flexibility that made Medicaid able to respond to unique 
needs of populations can have the same characteristics.
    But in ped care for kids and complex medical issues I think 
it's important that we make sure we get it right and move 
forward.
    Dr. Berry, can you please provide an example of variation 
in care that occurs across state lines for children with 
medical complexity?
    Dr. Berry. Yes.
    Mr. Green. Because I assume in the New England area you get 
them from everywhere.
    Dr. Berry. Yes, we do. We do. It's interesting. One of the 
major reasons why I went into this field at all and had an 
affinity for taking care of these children was an experience 
that I had in medical school back in Alabama.
    So they were working with our cardiologist--this is back in 
the late '90s--they were transferring all of their high-risk 
congenital heart disease surgery to Boston.
    We're talking about some major stuff so kids born with 
maybe three out of the four ventricles of their heart--big 
stuff. And that sort of blew my mind as a med student because 
I'm thinking, why don't you guys just do the surgery here--
you're a children's hospital--why don't you take this on.
    And they said, well, we've gone all around the country 
looking at the best outcomes for these children--we want to own 
them and we want them to undergo surgery in a place that has 
the lowest mortality rates, lowest complication rates and the 
highest chance of success.
    And so they were doing that, and I found that fascinating 
that they were bypassing other states and going all the way up 
to New England to have that done. And to save time----
    Mr. Green. Did Alabama pay for that care?
    Dr. Berry. We have Alabama Medicaid on board to do that.
    Mr. Green. OK.
    Dr. Berry. And without a lot of effect locally, right, 
because, the hospital would probably have enjoyed building a 
cardiothoracic surgery program around those kids. But they 
didn't.
    Now, understanding that and hearing experiences of children 
from other surrounding states in the southeast who may not have 
been offered that opportunity to go and may have been a part of 
other programs that didn't have as great as an outcome that 
sort of made me privy to the fact that sort of depending on 
where you live you might have services offered to you more or 
less depending on what's going on and certain families may not 
even know that they're able to travel and find a place with the 
best outcome.
    Mr. Green. Thank you, Mr. Chairman. I know I have--it is 
good to call you Mr. Chairman again.
    Mr. Barton. Temporarily.
    Mr. Green. Thank you for the time.
    Mr. Barton. This is Mr. Pitts' chair. I'm just substituting 
for Mr. Pitts. We thank the gentleman from Houston and I would 
now recognize myself for 5 minutes. Maybe ten or 15.
    Mr. Green. The authority of the chair.
    Mr. Barton. Yes. No, no. I played by the rules.
    I have several statements that I ask unanimous consent to 
put into the record. We have a statement of support for the ACE 
Kids legislation from the Children's Hospital Association.
    Then we also have a collection of 22 letters from different 
stakeholders expressing general support for the legislation. Is 
there objection?
    Mr. Green. No objection.
    Mr. Barton. Without objection, so ordered.
    [The information appears at the conclusion of the hearing.]
    Mr. Barton. Before I ask my questions I want to make 
another brief statement. I want to commend the committee staff, 
both the majority and minority. The draft legislation that's 
before us is obviously quite a bit different than the original 
ACE Kids Act that was introduced last year.
    We had a meeting with Mr. Pallone and Mr. Upton and Mr. 
Green, Ms. Castor, Congresswoman Cathy McMorris Rodgers about 3 
weeks ago in which it was very intense discussion.
    But the outcome of that meeting was, for those of us that 
are proponents of this legislation, that we really wanted to 
get it right and we weren't hung up on pride of authorship, and 
the committee staff took that to heart and they have 
transformed the original legislation.
    And Chairman Upton agreed to hold a hearing and that 
hearing is being held right now, and that's not trivial. We got 
five weeks of legislative days left before the election, 
counting tomorrow.
    So the outcome of this hearing is real important. If we 
want to move the bill this year then we're going to have to 
really listen and then you folks are going to have to interact 
with us on both the majority and minority side so that Chairman 
Pitts and Mr. Upton and Mr. Pallone and Mr. Green feel 
comfortable going to a markup and subcommittee in early 
September.
    So I want to thank the committee staff on both sides for 
working really hard on this to come up with a transformational 
draft. That is nontrivial and I appreciate it.
    My first question is a general question. The draft as it's 
currently structured does not have a metric for a quality 
standard at the federal level and I think most of you in your 
comments indicated that that was a possible concern and could 
be something we needed to add.
    So I just want to go right down the line. We will start 
with you, Dr. Berry. Do you think that we should amend the 
draft and put in a quality standard metric for health homes?
    Dr. Berry. I think you should absolutely consider it and 
would be happy to collaborate in order to think about what 
those metrics might be health research utilization wise, 
measures of the child's health specifically, patient-family 
experience, all the major domains of quality I think that we 
would think would be the most important to track progress of 
this and to show effectiveness.
    Mr. Barton. OK. Mr. Salo.
    Mr. Salo. Yes, and I would say that while I think that the 
quality measurement and reporting component is absolutely 
critical I would be cautious about putting a specific set of 
quality components in there because until we are sure what 
those are and I think it's important to also spend some time 
looking at the data that we do have and, making sure that we're 
focusing on a core implementable set of measures that can be 
done by providers and that we have the infrastructure in place 
to be able to do that and those are not unimportant things.
    But absolutely it is critical to the success of this and 
many other efforts that we are focussed on the quality metrics.
    Mr. Barton. OK.
    Ms. Frangenberg. I agree, and I would also add that it is 
very important that we reach out to families to understand how 
they are experiencing the system and we need to understand 
their ease of access on some scale, whether it is for Medicaid 
or for the systems that they are trying to access.
    Mr. Barton. OK.
    Ms. West. I agree we do need quality standards. Obviously, 
that's very important. I would just urge the committee to make 
sure that we don't build a more bureaucratic system and ease of 
access for families is super important. So I think that's the 
main thing I would ask you to think about.
    Mr. Barton. OK.
    Dr. Koop. I too support this. I would put a particular 
emphasis on the impact of care for the children, what they 
experienced, how the outcome of that care changed their life 
and how it influenced the family of their life. The data in 
that domain is much weaker than other domains and really needs 
to be accounted for.
    Mr. Barton. OK.
    Mr. Merrill. Yes, I do agree that we should have strong 
quality standards and not to be lost in all of that is data 
reporting--not to be used as a stick but to inform best 
practices so we can accelerate our ability to provide better 
coordinated care for this patient population.
    Mr. Barton. In your testimony, several of you mentioned--I 
think Dr. Koop mentioned it and Ms. West mentioned it--that we 
need to be sure that the decision of whether to enter into a 
health home was the family's decision.
    Is that something that we need to--the draft is ambiguous 
about that. Is that something that we need to make explicit in 
a revision? I'll start with, I guess, Ms. West.
    Ms. West. I think the most important thing is to make it 
accessible to families and families need to feel comfortable. 
So like in our situation originally we weren't very comfortable 
in our pediatrician's office. So we were looking for a place to 
go. So it was our decision. So I'm going to say yes, I think it 
should be a decision of the family.
    But there are rural communities--I'm lucky enough to live 
in Tampa, Florida, a big city where we have this fabulous 
clinic. So if you're in a rural community you might not even 
know about places to go.
    So I think there will some forms of communication that need 
to be established to communicate with these families.
    Mr. Barton. Dr. Koop.
    Dr. Koop. I think we should be explicit in saying that 
families should be able to make the choices they think are 
wisest for their children.
    Families today routinely communicate with each other. 
They're reliable weather vanes about pointing in the direction 
of quality and we need to make sure that they can follow the 
quality.
    Mr. Barton. Mr. Salo, to get states to opt into the system, 
which is voluntary, we have an eight-quarter or 2 year 90 
percent federal funding match, which Chairman Upton has 
indicated that we will fund to pay for. Is that something that 
you think would help the state Medicaid directors make 
decisions to become involved?
    And I would also ask if that's the right match, too high, 
too low? Because on the Republican side I can tell you that's 
going to be one we are going to have a little trouble selling 
to the most conservative members of my caucus.
    We have been down that road with, as Mr. Guthrie pointed 
out to me in private conversation, some police programs that we 
established ten years ago and when the federal match ran out 
then the state legislatures felt like they got left holding the 
bag.
    Mr. Salo. Right. So I don't know whether that's the exact 
right amount. But I would argue that having an enhanced match 
there is critically important for two reasons, one of which, 
states often suffer from what we call opportunity fatigue.
    There are so many potential demos or reforms or pilots that 
are out there. They've got to be able to figure out which ones 
do
    Enhanced match is going to help cut through the clutter and 
say all right, that's a little bit more enticing and I think 
the real reason for that is that any of these efforts that 
we're undertaking and specifically with children with medically 
complex conditions the infrastructure that you need to build in 
terms of designing--how do you structure a health home, how do 
you make sure that you've got interconnected IT systems, how do 
you think about some of the payments incentives or shared 
savings to the physicians that might be a part of this.
    All of that is going to require a lot of investment in 
infrastructure and in time and energy, and at least, an eight 
quarter enhanced match is going to allow for some of that 
infrastructure investment. And so I think it's really critical, 
if at the very least for that.
    Mr. Barton. For some reason, my time expired 2 minutes ago. 
I am going to have to chastise myself.
    We want to recognize now one of the original co-sponsors, 
Kathy Castor, who said nice things about me. Ms. Castor has 
been indefatigable--it's a big word for a Texan--in her support 
of this legislation and I think because of her we've got a 
great chance to get across the finish line.
    Ms. Castor. Well, thank you, Congressman Barton. I'd also 
like to recognize former Congressman Jim Davis, who is here in 
the back of the room making sure we all behave and do the right 
thing.
    He represented Tampa, Florida, the district that I have the 
privilege of representing, and has always been an advocate for 
kids and families. So thank you, Jim, for popping in here 
today.
    Ms. West, could you take us back to the real world here and 
talk about the difference for families without this type of 
medical home, kind of a before and after and your experience 
talking with families at the St. Joseph's clinic and what 
changes in their lives and the lives of their children--this 
type of coordinated care as well?
    Ms. West. Well, it's sort of an emotional thing but I'll 
just take you through--imagine going into a doctor's office 
where your child is in a wheelchair and has tubes attached to 
it and everything else and--attached to their chair, not to 
them but sometimes to the child as well.
    And then you go in and there are all these cute little kids 
running around and families who are staring at you and don't 
really know what to make of you and I know this sounds like a 
simplistic thing, but it's very uncomfortable and you don't 
feel like you're welcome in the doctor's office and people 
don't know what to do with you. They don't know how to speak 
with you.
    The kids are wondering what's wrong with your child and 
they're asking their parents. And so, you don't really want to 
go to the doctor. I'm a strong person, educated, so I'm going 
to go.
    But I think there were people who would not go to the 
doctor's because they would feel intimidated and uncomfortable. 
So when you go to the Chronic Complex Clinic, everyone welcomes 
you.
    There's lots of kids who have multiple disabilities. They 
know how to talk with our children, how to embrace them. The 
doctors are asking great questions and spending a lot of time 
not trying to rush us out.
    In a regular pediatrician's office you would only be 
allowed 5 or 10 minutes because they've got more kids that 
they've got to get through. But at the Chronic Clinic we take 
as long as we need.
    Ms. Castor. So at St. Joseph's I've seen team of health 
professionals and social workers that are there. Dr. Berry, at 
Boston, talked to us about the typical care management team and 
in fact in the draft bill we have a reference to the team of 
health care professionals and we're going to need your input on 
whether that's the right mix. Talk about the entire team that's 
necessary to provide good care to these kids.
    Dr. Berry. Right. So at our clinic we have social workers, 
case managers, heavy on the nursing staff. We have 
neurodevelopmental-trained pediatricians, general pediatricians 
working on both the in-patient and out-patient side.
    We also collaborate very, very closely with surgeons who we 
sometimes embed into our clinics, palliative care physicians. 
So a myriad of folks.
    One thing that we hope from legislation, though, is that we 
can elevate what we've got and really integrate it with the 
other providers that you just can't mix in to these clinics.
    So all the primary care docs throughout New England, home 
nurses, community case managers, school nurses, even getting 
the durable medical equipment vendors involved who are in 
charge of getting all the equipment to the children's home in a 
timely fashion.
    Just thinking about any type of system where all those guys 
are integrated and functioning as a team would be awesome.
    Ms. Castor. Yes. What I've seen is, the family is so 
focused on taking care of their child but there is so much 
bureaucracy and red tape. There is so much paperwork and for 
families that are going from doctor to doctor to doctor they're 
kind of on their own.
    But the benefit of having the medical home is you have 
those caseworkers that know how to fill out the forms and know 
how to pick up the phone and talk to folks at state Medicaid. 
Maybe, Tish, you can talk a little bit about that directly.
    Ms. West. Well, in the beginning of Caroline's life I used 
to carry around these gigantic notebooks full of all of her 
medical records and her films and everything else so as we went 
from doctor to doctor I could explain what was going on with 
her and what her illnesses were.
    And the paperwork was tremendous as well and it would take 
me 45 minutes to an hour just to explain what was going on with 
our child to a new doctor.
    Now at the clinic they have the medical records that are 
electronic. Everyone there knows our daughter and also because 
the subspecialties are right there on the same floor they know 
our daughter.
    They know what's going on with her. It's a real 
collaborative effort and she is much healthier as a result of 
that. We don't have to spend hours and hours.
    And then we also talk about the Medicaid issue. It took me 
7 years just to get approved from the Medicaid waiver program 
in Florida. There wasn't a clear definition of exactly who got 
approved.
    It was very bureaucratic and there was tons of paperwork. I 
had to write letters over and over and over again. My doctors 
had to write letters. It took years for me to get on the 
program.
    Ms. Castor. Mr. Merrill----
    Mr. Barton. The gentlelady's time has expired. I hate to--
--
    Ms. Castor. Can I ask the witnesses to submit certain 
documents though?
    Mr. Barton. Yes, ma'am.
    Ms. Castor. Because one of the outstanding questions is 
that this is going to be voluntary for states. It's a state 
option and what's going to happen for kids where their states 
do not opt in.
    So Mr. Merrill and all of you, we really need to you 
address what Congressman Barton said before, the incentives for 
states and health professionals to participate, to ensure that 
the kids across the country are getting the best care.
    Thank you.
    Mr. Barton. We thank the gentlelady.
    We now recognize the gentleman from the Bluegrass state of 
Kentucky for 5 minutes.
    Mr. Guthrie. Thank you very much and first, Ms. West, I 
want to say thanks for coming in and sharing your stories 
because it's powerful for us to hear your stories. And I have 
never thought of the waiting room from your perspective as you 
just said that and that's an image that's in my mind.
    I went through some with my son. He was about 4 or 5 or--
about 6 months, when he was 8 we found a problem. Had to spend 
a lot of time at a pediatric urologist.
    Figured it out. He had surgery and there's no implications 
from it now. But I remember distinctly being in the pediatric 
urology. So if you're going to a pediatric urologist in a major 
children's hospital there's a lot of issues with children there 
and I have specifically a couple in mind.
    I remember--he was 8 so I remember specifically a family 
with a baby and they said does he need to be fed. They're 
talking to each other and the dad reached over to get the 
diaper bag out or the bottle bag or whatever and I'm thinking 
oh, I remember those days when I used to have to do that and he 
pulls out and pulls her dress up and gives her a syringe 
through the stomach and it was, like, wow, this is--it just 
really struck me and it struck me how much families struggle 
and how much we thought we were struggling and how much 
families struggle and being able to take those experiences that 
you have and share them with us helps, and so I appreciate your 
willingness to do so.
    Ms. West. Well, thank you very much for having us here. 
Thank you.
    Mr. Guthrie. Thanks. But I do have a question. I'm the co-
sponsor for the bill and I know you, Mr. Salo, you touched on 
this a little bit with Mr. Pitts, and he had to go take a vote 
in another committee so I just want to make sure you touched on 
it and maybe others can elaborate as well.
    But I want to ask you, so the care coordination--Kentucky 
has moved to managed care Medicaid and so 34 states, I think, 
do managed care in Medicaid and coordinated care is with 
complex medical needs through a managed care program. So 
Medicaid is doing this.
    Given this, can you outline or elaborate on the need for 
the home health model described in the bill? Is this intended 
for those states that don't have Medicaid managed care?
    Mr. Salo. Not necessarily. I think I want to make it clear 
that I think the home health option is and can be a very 
attractive option for states that are on a broad spectrum from 
managed care.
    I mean, you can do managed care where you're just--you have 
a managed care organization and then all they do is pay 
physicians fee for service.
    That's not all that much managing. You could have managed 
care where the managed care association or organization is 
employing patients that are in medical homes or other types of 
intensive care coordination.
    So this I would view as a tool that can be attractive for a 
lot of different states. But I don't want to lead people to 
think that this will be something that everyone will do because 
this is not necessarily going to be the option for everyone, 
which is why I think it's critical that the other components of 
the proposal, sharing with the best practices and then really 
investing into the research and the data underlying all of this 
will help get at some of those other issues for others states.
    Mr. Guthrie. OK. You're answering my question but I want to 
just redirect a little bit and then if anybody else wants to 
add in.
    So in May, CMS issued the final rule on Medicaid managed 
care. The new rule significantly strengthens a number of 
requirements on managed care plans regarding quality monitoring 
and oversight.
    The new rule also has additional quality requirements 
specific to pediatric services and although this rigorous 
quality oversight is for all Medicaid managed care plans 
there's no comparable for fee for service payment structure.
    Considering that most home health models are paid via a fee 
for service payment structure, are you concerned that the 
proposed home health model in the discussion bill might put 
children at risk due to lack of quality oversight?
    So anybody can answer that. We're just trying to get to the 
details.
    Mr. Salo. Yes. No, I think what you will see in a health 
home model and what you're seeing as the trend throughout 
Medicaid is the gradual movement away from a fee for service 
only, an uncoordinated fee for service model.
    Again, there are different ways of doing this. One of the 
things that some of the states say is that fee for service--and 
again, to Ms. Castor's point, fee for service, abbreviated FFS, 
for kids with medically complex conditions or other people with 
severe needs the FFS really stands for fend for self and that 
is not the ideal that we want and that's not where state 
Medicaid programs are going. They are going there with managed 
care, they are going there with ACOs, they are going there with 
patient-centered medical homes.
    But the whole point of this is to create an infrastructure, 
to create a structure where you've got the case managers. 
You've got the social workers. You've got the community health 
workers who are bringing all of these fragmented silos of 
services and it's not just hospitalizations.
    It is the primary care. It is the behavioral health, the 
mental health and it is the long-term services and supports 
that are critical.
    Mr. Guthrie. Well, I'm about out of time. That's exactly 
what we want so I'm glad you're saying that.
    Mr. Merrill.
    Mr. Merrill. If I could add to that, Mr. Guthrie. As 
providers of care and really what ACE Kids is about is--at its 
core is coordinating the best are possible for these children 
and since we own our own health plan we have insight into the 
managed care part of this equation. And the managed care 
organizations, with all due respect, are focused on claims.
    We're focused on care as providers and if we truly want to 
coordinate care with this population it needs to occur closer 
to the providers and not so much on the claims side of the 
equation.
    That said, managed care organizations do play a key role in 
this and all of us have to work together if we truly want to 
achieve the goals and the aims of ACE Kids.
    Mr. Guthrie. Thank you very much. I yield back.
    Mr. Barton. The gentleman yields back.
    And we weren't able to have the managed care groups testify 
today but we did ask them for a letter and they have presented 
the letter and we will put that into the record and they do 
express some continuing concerns about the legislation.
    With that, we recognize the gentlelady from Chicago, the 
co-chairman of the Czech Caucus with myself, Ms. Jan 
Schakowsky, for 5 minutes.
    Ms. Schakowsky. Thank you, Mr. Chairman, and I am so proud 
to be a co-sponsor of the legislation, and I wanted to thank 
you, Mr. Chairman and Congresswoman Castor, for your great work 
on this, and I want to thank all the members of the panel who 
are here today to support the ACE Kids Act and to learn more 
about the challenges that we face to make the families and 
health providers able to serve the children with complex 
medical needs.
    I especially want to thank you, Ms. West, for taking the 
time. I am just so thrilled. I had to walk out during your 
testimony but read it and just so thrilled to read currently 
Caroline is a happy child with an infectious smile and a happy 
disposition due to the care that you were able to, after many 
struggles, find.
    Recently, a Chicago mother came to my office with her child 
who has complex medical needs, Antoine, and before they were 
able to find a medical home they really, really struggled.
    They finally found it at Advocate's Children's Hospital in 
the Chicago area where he receives care and coordinated care 
for children with a medical complexity program. That's what 
it's called.
    The coordination of Antoine's care, as you all know, is no 
small task and as you can see from his complex care map, I have 
a map that I can show the witness and the committee. And even 
with the assistance of Advocate's Children's Hospital, 
Antoine's mother remains his primary caregiver.
    Despite these challenges, Antoine's family is definitely 
one of the lucky ones that it's able to live close to his 
health home and has a skilled medical team supporting him at 
the coordinated care for children with medical complexity 
program.
    So, Ms. West, you mentioned how Medicaid has been in 
supplementing your family's private insurance to ensure that 
your daughter Caroline receives the care she needs.
    Can you discuss why it's important for families that have 
children with complex medical needs to have access to both 
private insurance and Medicaid and how Medicaid coverage has 
helped Caroline to receive the health services she needs?
    Ms. West. Yes. The insurance programs often do not cover 
some of the medicines that these kids need. So there were 
certain seizure meds that weren't covered that were very 
costly. The insurance programs limit the number of therapies 
that you can have per year or the types of therapies.
    Even though the doctors are writing prescriptions for these 
things the insurance companies do not allow you to continue to 
have those therapies.
    So Medicaid would pick up anything that our private 
insurance didn't pick up after our deductible. So, we buy 
insurance. We meet our deductible and then our insurance picks 
up and then we have Medicaid pick up the balance.
    So many families don't even have the safety net of a 
private insurance and so they are going to the hospitals, to 
the emergency rooms particularly, costing the system a lot of 
money--more money than they would cost if they were going to a 
really good clinic for care.
    Ms. Schakowsky. Thank you so much.
    Some people think that managed care plans within a state's 
Medicaid program can do this work, coordinating care for some 
of the most complex and vulnerable kids.
    And I'm not saying that a managed care plan doesn't 
necessarily do some very good care coordination work. But it 
seems like what I'm hearing today goes far beyond what a remote 
health plan provides.
    Ms. Frangenberg, in your testimony you discuss some of the 
reasons why managed care plans might struggle to really offer 
the family-centered care coordination that these families rely 
on. In fact, in some instances certain claims denial practices 
or narrow networks just flat out don't work for this 
population.
    So can you explain more about that?
    Ms. Frangenberg. Sure. Thank you for that important 
question.
    So managed care plans are not normally equipped to handle 
the highly specialized needs of children with highly complex 
needs.
    So their networks are usually narrow and as we have heard 
today, many of these children need to cross state lines to get 
the care that they need and managed care plans are usually not 
very good at doing this.
    Also, this population doesn't usually have the funding--I'm 
sorry, the managed care plans don't usually have the funding to 
pay the personnel to do the very complex care coordination that 
these children need.
    So I would say that it's important we consider 
organizations such as family organizations who already have 
parents like Ms. West and that know the system, who would be 
able to provide guidance in that are coordination.
    Mr. Barton. The gentlelady's time has expired.
    Ms. Schakowsky. Thank you.
    Mr. Barton. We now go to Dr. Murphy of Pennsylvania who 
yesterday passed his mental health reform bill on the House 
floor 422 to three.
    Mr. Murphy. To two.
    Mr. Barton. To two.
    Mr. Murphy. We convinced----
    Mr. Barton. Who's counting? So congratulations and you are 
recognized for 5 minutes.
    Mr. Murphy. Thank you, Mr. Chairman, and thank you for this 
bill.
    So you had just said that it's really a landmark mental 
health bill. It makes a lot of changes and this committee and 
the Oversight Committee which I chair has done a couple years' 
worth of hearings on this and everybody on this committee has 
played a role in trying to help this.
    But as part of this we recognize that those children with 
any medical problem it is an incredible psychological time--
financial and emotional strain on the family.
    And you know that when you have a chronic illness or an 
acute condition but certainly chronic, there's a much higher 
incidence of depression which oftentimes is completely 
overlooked in the pediatric population but we know is there.
    You're also aware, I'm sure, that pharmaceutical costs are 
high in the extent that they are not followed. People may 
realize they are expensive. They don't understand. As you know, 
multiple physicians may prescribe different drugs. That's part 
of the problem that you need care coordination for.
    We know that 72 percent of psychotropic drugs are 
prescribed by a non-psychiatrist and we know that over 90 
percent of psychotropic medication for children is prescribed 
off label with massive errors.
    But then again, we don't have enough child and adolescent 
psychiatrists. We have 9,000. We need 30,000. Part of what this 
bill does is create more incentives for child and adolescent 
psychiatrists, more psychologists and a lot more funding in 
there to do more pilot programs for tele mental health.
    So this gets in a couple issues I want to talk about as we 
move forward in this. As you know, the people with a medical 
condition or let's say a psychological condition that's a 
particularly serious mental illness, 75 percent have at least 
one co-occurring chronic medical illness. Fifty percent have at 
least two. Thirty-three percent have at least three.
    So along these lines, Dr. Berry, I want to ask you that--
and I see you have an undergraduate degree in psychology, which 
makes you brilliant.
    Dr. Berry. The Harvard part is iffy at that.
    Mr. Murphy. But the extent of children with medical 
complexity that a have serious mental illness and serious 
emotional disturbance what is the status of coordinating that 
physical and behavioral health care in dealing with a health 
care home? Could you address that issue?
    Dr. Berry. I mean, I think those children are the most 
vulnerable of the vulnerable, right. I mean, to have it on both 
sides, the emotional health and physical health component 
interacting is just unbelievably serious.
    And we lean on our psychiatry/psychology teams a lot to try 
to get help coordinating their care. I think the problem is, 
and hopefully your bill is going to really help address this, 
is that there is such an insufficient number of them that the 
vast majority of the care that they're providing now is acute 
care for emotional health demise that's occurring when the kids 
need to come in to the hospital for an acute episode to treat, 
et cetera.
    We don't have that great community infiltration to maintain 
the emotional health of children after they come out of that.
    So, I would hope that in all of this that mental health is 
hugely recognized as a major co-morbidity if not a primary 
condition for the children with medical complexity that we're 
thinking about to be included in these efforts and anything 
that helps integrate that mental health-physical health 
continuum would be fantastic.
    Mr. Murphy. I know the Children's Hospital of Pittsburgh 
has the warm handoff in the pediatrician's office where when 
they know when they make the referral right away to the family 
90 percent compliance plus.
    If they say, here's a number, call them back, particularly 
people on Medicaid, it drops well below 50 percent.
    You have some who struggle to get to the office the first 
place, taking multiple buses and et cetera and now you say come 
back another day, one of the things this bill changes is to 
allow the same day doctor rule to be dropped.
    But I want to ask, in the context of this how--is there 
something else we need to do in this bill or other bills to 
help--allow more if this care home for the medical complex to 
really coordinate those two issues, and I'll open this up to 
anybody here.
    Dr. Berry. Specifically for the transportation and sort of 
getting to the----
    Mr. Murphy. Well, no. Just in terms of what you need for 
having a good health home and medicine and Medicaid, et cetera, 
any comments by anybody to strengthen the bill? You don't have 
to have an answer. If you have one in the future--I want to 
submit that as a question for all of you.
    Mr. Salo. I guess I would just offer that I completely 
agree with your sentiment about this as being one of the 
greatest challenges that we do have.
    You know, I think the emerging good news is that this 
exactly is an issue that many, many state Medicaid programs are 
full on embracing and tackling right now is how do we better 
integrate.
    I talk a lot about silos and physical and long-term care 
and pharmaceutical and behavioral health are all silos.
    One of the things that many, many Medicaid programs are 
trying to do right now is to better integrate the behavioral 
health and the acute care within Medicaid and, again, it's 
within a lot of different contexts--some managed care, some 
health homes and that's why I think it's important for our 
approaches when we're looking at a more targeted area like kids 
with medically complex conditions to make sure that we've got 
the ability, again, not to just pigeonhole this as an area that 
we kind of put off the side over here in a new silo but to 
allow it to blend in with some of these other efforts that are 
integrating behavioral health, that are integrating long-term 
care and those types of things.
    So that's just to keep it--my advice to keep it broad so 
that it accommodates the directions that states are already 
going in that area.
    Mr. Murphy. Mr. Chairman, I'll submit the questions for the 
record for the rest of the panel. I hope you can address that 
because we know this is critically important. I thank you for 
your time today.
    Mr. Barton. OK. Seeing no other members on the minority 
side, we now go to the gentleman from Florida, Mr. Bilirakis, 
who's an original co-sponsor of the bill.
    Mr. Bilirakis. Thank you, Mr. Chairman, thank you for 
holding this very important hearing and thanks for being so 
persistent along with Representative Castor on advancing this 
very important bill.
    In the Tampa area we have St. Joseph's Children Hospital--
--
    Mr. Barton. We have late breaking news. Dr. Murphy has just 
co-sponsored the bill.
    Mr. Bilirakis. Awesome.
    Mr. Barton. Let's give him a round of applause.
    Mr. Bilirakis. I didn't have anything to do with that.
    In the Tampa area, we have St. Joseph's Children's 
Hospital, which has been successfully running the Chronic 
Complex Clinic for Children.
    I had the opportunity to visit the clinic at least once and 
it's one example of how to successfully treat children with 
complex medical conditions. I am pleased that Ms. West is here 
as well and, her daughter, of course, is a patient at St. 
Joseph's.
    Ms. West, can you talk about how successful or unsuccessful 
the treatments before you came to St. Joseph's were and what 
it's like now for your daughter to be a patient at St. 
Joseph's?
    Ms. West. Well, she's 19 years of age so we do have a 
diagnosis and we pretty much are in a routine of managing her 
care at this point. But earlier in her life we didn't have a 
diagnosis and so the diagnostic process was pretty crazy, 
trying to go across state lines and visit doctors who had 
various expertise.
    And I always wondered, who's the case manager and found out 
that I was the case manager and that was shocking to me because 
I didn't have the expertise. So I had to quickly get the 
expertise.
    When going to the Chronic Complex Clinic there are social 
workers there, case managers, people who were educated to help 
me navigate the health care system, the Medicaid system, and it 
was huge, not only just for me but now also for Caroline's 
overall health we were seeing doctors in a more timely fashion.
    When we needed to see a gastroenterologist sometimes we 
could get the appointment the next day through the clinic 
instead of having to go home, get on the phone, make an 
appointment, wait a month.
    Those kind of issues are really, really important and all 
of that worked seamlessly through the Complex Clinic.
    Mr. Bilirakis. What was her medical condition at the time?
    Ms. West. She has a rare disease called alternating 
hemiplegia of childhood. You don't need to remember that. It's 
complicated, but she presented with seizures, low tone cerebral 
palsy, posturing, nystagmus eyes bouncing all over the place.
    It was a mystery because at first they thought she might 
have seizures and so we hooked her up to EEG and she wasn't 
having seizures. So then after that test was over we would be 
dismissed so then we had to continue to pursue there was 
something wrong with her.
    It's not seizures. It's something else. So eventually we 
did get a diagnosis of alternating hemiplegia, which is a rare 
neurological disorder by a spontaneous genetic mutation.
    Mr. Bilirakis. OK. As a mother of a child with a complex 
medical condition, how important is it for good care 
coordination for both the patient and the caregiver?
    Ms. West. Well, I mentioned earlier in my testimony that at 
one point before we went to the Chronic Complex Clinic that we 
actually had to check in to the hospital to get all of our 
doctors to communicate with each other and that was pretty 
costly to the system, I think, plus also to our family. Well, 
that doesn't happen now.
    Mr. Bilirakis. OK. Question for the panel--is there a 
standardized definition of a medically complex patient? Who 
would like to go first?
    Dr. Berry. I think across the country we've pulled together 
a lot of stakeholders to try to pull that together and I think 
most agree on that the core attributes are a lifelong chronic 
condition that affects multiple organ systems to body that 
leads to significant impairment and even just that in itself 
really helps articulate and carve out the kids that we really 
think are complex.
    Mr. Bilirakis. Anyone else want to----
    Ms. West. I would just like to urge everyone to please work 
on a definition that is clear because I would hate to see this 
get diluted. I think it's important to keep it focused on kids 
who do have complex illnesses. As I mentioned earlier, going to 
a typical pediatrician's office was not a really healthy 
experience for any of my family or for my daughter.
    But so going to a clinic where there are lots of kids who 
have medical complexity is much better. The doctors are more 
educated. We get things done faster and more efficiently and 
our daughter is more healthy.
    Mr. Bilirakis. Anyone else want to elaborate on that?
    OK. I know I only have a few seconds, Mr. Chairman. Care 
coordination is obviously so important, especially for parents 
with severe conditions. How do we promote greater care 
coordination in fee for service framework? Who would like to 
take that first?
     Mr. Merrill. I would say that the intent is to move 
actually away from fee for service and if you look at the 
intent of ACE Kids it's actually to move to an at-risk model.
    And so if we're able to ramp up through shared data a 
common definition, quality standards and reporting at the 
national level that will allow us to accelerate our ability to 
better coordinate care, reduce waste, the fragmentation of 
care, the episodic care that occurs with this patient 
population today and ultimately move to the budget certainty 
that this bill or this act contemplates.
    Mr. Bilirakis. Anyone else want to chime in?
    Mr. Barton. The gentleman's time has expired.
    Mr. Bilirakis. OK. Thank you.
    Mr. Barton. Dr. Berry looked like he was just about to say 
something so we'll give him----
    Dr. Berry. Well, I will say here is just one anecdotal 
example. But the Michigan Medicaid program has instituted a 
policy for reimbursing clinicians and their fee for service 
model for non-face-to-face health care encounters for children 
with medical complexity--phone calls, paperwork, developing 
care plans, multi-disciplinary team meeting and just doing 
that, I think, has incentivized the providers to take on those 
clinical activities and do them well. It's a Band-Aid but it's 
working.
    Mr. Bilirakis. Thank you so much. Appreciate it.
    Mr. Barton. Thank the gentleman. And now Mr. Long, who 
actually is a sponsor of the bill so we appreciate that.
    Mr. Long. Thank you, Mr. Chairman. I appreciate that and I 
just want to say for the record how we do ourselves a honor or 
privilege, I guess, or do ourselves right when we work on 
legislation like this in a bipartisan fashion that can do so 
much good for so many people.
    And before I get into my question, I'd like to thank 
Representative Barton on the Republican side and Representative 
Castor on the Democrat side for all of their bipartisan work 
and hard work on this legislation and also our great children's 
hospitals in the state of Missouri and they have been tireless 
advocates for this legislation. I appreciate that very much.
    And our oldest daughter--we have two daughters--our oldest 
daughter just finished up her first year of residency at the 
University of Missouri in pediatrics. So this is near and dear 
to my heart.
    Mr. Merrill, in your testimony you referred to a necessary 
range of providers need to implement a care plan for a 
medically complex child. Can you expand briefly on what medical 
specialties this range typically includes and how broad it may 
need to be in order to properly serve these children?
    Mr. Merrill. Yes, and thank you for the question.
    I think as we've heard through the testimony these children 
with medical complexity require the services and care of 
multiple pediatric specialists and it's pulmonologists, it's 
orthopaedic surgeons, it's neuro surgeons. It's cardiologists.
    Just go down the line, and what children's hospitals are 
able to bring to the table is comprehensive services across 
multiple pediatric service lines to help better care for these 
patients. And in fact, because of the services that we offer we 
are the safety net for a lot of these families.
    That said, we are not the equation but we are a key part of 
the equation. We play a key role in coordinating care. But 
other providers must be part of the equation as well including 
the specialty hospitals like Gillette, the HMOs, the home 
health care companies and, of course, as we've heard earlier 
the mental health services for this patient population.
    Mr. Long. Are you able to touch on some examples of 
barriers that prevent a medically complex child from receiving 
care from the appropriate range of providers under the Medicaid 
system?
    Mr. Merrill. Yes. So as a regional children's hospital not 
just for Texas but really for all of the southwest, we do 
receive a number of children from other states and 
unfortunately the comprehensive services that are offered at 
full service children's hospital aren't available in every 
state.
    And so I could give you multiple examples and in fact I'd 
be happy to send your staff and the committee some examples of 
patients that come from states like New Mexico and it is an 
absolute struggle to get these children approved through 
Medicaid in New Mexico, to get them over to Texas to receive 
the high-level care, the services that we offer here. The 
travel, the difficulty of the long distances all come in to 
play and they create multiple barriers for these families.
    Just one very key important point, though, if ACE Kids is 
passed the idea is to create these networks of care that allow 
us to push the care back into the community so that these kids 
can stay in those communities longer.
    Mr. Long. You mean when it's passed, don't you?
    Mr. Merrill. When it's passed. Thank you. Thank you. Thank 
you for the correction, Mr. Representative.
    And so that would include enhancing the care and expertise 
of the local providers that are there in those communities.
    Home monitoring, for example, and then more importantly ACE 
Kids does create a clear pathway for these children to move 
across state lines more easily if in fact that care is needed.
    Mr. Long. OK. Thank you. And Mr. Chairman, being an 
auctioneer I can do 5 minutes in 3 \1/2\ minutes. So I yield 
back the rest of my time.
    Mr. Barton. All right. We appreciate that.
    Seeing no other members present who haven't already had an 
opportunity to ask questions, we are ready to conclude the 
hearing.
    We would like to give Mr. Green an opportunity for a few 
closing comments if he wishes.
    Mr. Green. Mr. Chairman, I want to thank you and both my 
colleague, Kathy Castor, for bringing this bill up. It's been a 
work in progress and it still is.
    But after we've had a good hearing, I think, today that 
brought the issues out that, I'll be looking forward to working 
with both of you all to see we move the bill out of the 
subcommittee.
    Mr. Barton. OK.
    Mr. Green. And on to the full committee.
    Mr. Barton. Mr. Engel just walked in. Do you wish to ask 
questions, Mr. Engel?
    Mr. Engel. Yes.
    Mr. Barton. All right. You're recognized for 5 minutes 
starting right now.
    Mr. Green. And Mr. Chairman, the Missouri fellow said he 
could do 5 minutes in 3. Congressman Engel is from New York and 
he always talks faster than any Texan does.
    Mr. Barton. We just met with Mr. Trump this morning. He 
sends greetings to his fellow New Yorker, Mr. Engel.
    Mr. Engel. Talking about someone who talks fast, Mr. Trump 
is certainly in that category.
    Thank you, Mr. Chairman, and thank you, Ranking Member 
Green, for holding today's hearing. You know, it's difficult 
for members on either side of the aisle sometimes to find 
common ground.
    But I think I speak for everyone here when I say that 
ensuring that children have access to quality medical care is 
an issue on which we can all agree and that is why I am a co-
sponsor of the ACE Kids Act and I applaud my colleagues--you, 
Congressman Barton, and Congresswoman Castor for their work on 
this important bill and I thank the witnesses today for their 
contributions and I hope that today's conversation helps to 
move this package forward so that we could have better care for 
children living with complex medical conditions.
    Dr. Berry, in your written testimony you describe the key 
concepts of care activities for children with medical 
complexity and explain that such activities can help to, and to 
quote you, ``optimize the health of children with medical 
complexity who are at high risk for poor health outcomes and 
excessive health care utilization.''
    Can you elaborate bit on who those high risk children are? 
I'd like to know who are the particular populations 
disproportionately affected by complex medical conditions and 
if that's the case what can we do to address such disparities.
    Dr. Berry. You can think about complex chronic conditions 
that affect any sentinel organ system and on the severity 
spectrum all of those kids are at risk. So complex congenital 
heart disease, neurological disease, urinary disease, 
digestive, all down the line.
    Now, for some of these conditions, for example, cystic 
fibrosis might be one sometimes the care for those kids may be 
a little bit better coordinated and organized because the 
pediatric pulmonary providers are stepping up to the plate to 
really own the kids and maybe take care of their non-pulmonary 
problems.
    In our experience, we think that the children that have 
underlying neuromuscular diseases are often the ones that sort 
of fall through the cracks a bit and don't get as good of care 
just because they tend to have more co-morbidities and 
sometimes the neurology workforce is just not equipped to 
manage all the problems.
    Mr. Engel. Thank you. Let me ask you a follow-up concerning 
quality data in order to identify and address these 
disparities.
    We need reliable and comprehensive data regarding children 
with medical complexity and I believe it's also important that 
such data is prescribed and collected at the CMS level so that 
we can have countrywide comparable information on this entire 
population because obviously without solid information about 
the issues affecting these children we cannot possibly hope to 
meet their needs. So let me ask you this, Dr. Berry.
    Can you speak to the importance of high-quality national 
data on children with medical complexity and what data 
specifically do you feel it would be important to gather?
    Dr. Berry. It's great that right now we do have Medicaid 
claims data from all of these states, right, that include all 
their health care encounters across the continuum so that we 
can see how often these kids are engaging the system, where 
their spending occurs, et cetera, which is a wonderful base.
    There is such variation in the quality and the depth and 
the organization of those data across states that it sometimes 
makes it impossible to look at one state and compare the 
experiences of a kid in the state versus another.
    So just knowing on the Medicare side of what they have and 
they've been able to pull together this nationally clean data 
set that's readily accessible for use to quickly assess best 
practices, variation in care and outcomes for their patient 
population, to elevate what we have now with the Medicaid data 
and bring it on that trajectory to get to that Medicare side 
will be phenomenal.
    Mr. Engel. OK. Thank you. It's 101, Mr. Chairman, so I 
listened to Mr. Green and became a fast-talking New Yorker.
    Mr. Barton. We thank the gentleman from New York.
    I will remind members that they have ten business days to 
submit questions for the record and if they do I ask our 
witnesses to respond promptly.
    The questions should be submitted by close of business on 
Thursday, the 21st of this month. Now, my final question to the 
panel--I am not asking you do you endorse the bill as drafted. 
But does everybody on the panel support the concept in the bill 
and encourage us to try to move the bill year?
    Mr. Berry.
    Dr. Berry. Unwavering enthusiasm. Can't thank you guys 
enough for all the background work that led up to this 
unbelievably excited about the potential law.
    Mr. Barton. So that's a yes?
    Dr. Berry. That's a yes.
    Mr. Barton. Mr. Salo?
    Mr. Salo. Yes, we absolutely support the concepts behind 
the bill and we'd be more than happy to work with you towards 
fruition.
    Mr. Barton. That's important. Thank you, sir.
    Ms. Frangenberg. Absolutely, without a doubt.
    Mr. Barton. Thank you.
    Ms. West. Yes. It's just so exciting to be here after 20 
years of going through the medical system kind of alone to see 
all these people working together to come up with something 
that's going to be better for all these children and I applaud 
all of you for doing it. Thank you so much.
    Mr. Barton. Thank you.
    Dr. Koop. Yes. This discussion draft that we went through 
today is something we would support.
    Mr. Barton. Thank you.
    Mr. Merrill. On behalf of the children's hospitals, yes.
    Mr. Barton. OK.
    Is there anybody in the audience that doesn't support it? 
All those in favor say aye. I mean it. Raise your hands. Let's 
see it.
    Let the record show every hand went up.
    The hearing is adjourned.
    [Whereupon, at 12:22 p.m., the subcommittee was adjourned.]
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