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21–907 2017

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 

( 

Printed for the use of the Committee on Energy and Commerce 

energycommerce.house.gov 

(II) 

COMMITTEE ON ENERGY AND COMMERCE 

FRED UPTON, Michigan 

Chairman 

JOE BARTON, Texas 

Chairman Emeritus 

ED WHITFIELD, Kentucky 

JOHN SHIMKUS, Illinois 

JOSEPH R. PITTS, Pennsylvania 

GREG WALDEN, Oregon 

TIM MURPHY, Pennsylvania 

MICHAEL C. BURGESS, Texas 

MARSHA BLACKBURN, Tennessee 

Vice Chairman 

STEVE SCALISE, Louisiana 

ROBERT E. LATTA, Ohio 

CATHY MCMORRIS RODGERS, Washington 

GREGG HARPER, Mississippi 

LEONARD LANCE, New Jersey 

BRETT GUTHRIE, Kentucky 

PETE OLSON, Texas 

DAVID B. MCKINLEY, West Virginia 

MIKE POMPEO, Kansas 

ADAM KINZINGER, Illinois 

H. MORGAN GRIFFITH, Virginia 

GUS M. BILIRAKIS, Florida 

BILL JOHNSON, Ohio 

BILLY LONG, Missouri 

RENEE L. ELLMERS, North Carolina 

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 

FRANK PALLONE, JR., New Jersey 

Ranking Member 

BOBBY L. RUSH, Illinois 

ANNA G. ESHOO, California 

ELIOT L. ENGEL, New York 

GENE GREEN, Texas 

DIANA DEGETTE, Colorado 

LOIS CAPPS, California 

MICHAEL F. DOYLE, Pennsylvania 

JANICE D. SCHAKOWSKY, Illinois 

G.K. BUTTERFIELD, North Carolina 

DORIS O. MATSUI, California 

KATHY CASTOR, Florida 

JOHN P. SARBANES, Maryland 

JERRY MCNERNEY, California 

PETER WELCH, Vermont 

BEN RAY LUJA ́ N, New Mexico 

PAUL TONKO, New York 

JOHN A. YARMUTH, Kentucky 

YVETTE D. CLARKE, New York 

DAVID LOEBSACK, Iowa 

KURT SCHRADER, Oregon 

JOSEPH P. KENNEDY, III, Massachusetts 

TONY CA ́ RDENAS, California 

(III) 

SUBCOMMITTEE ON HEALTH

JOSEPH R. PITTS, Pennsylvania 

Chairman 

BRETT GUTHRIE, Kentucky 

Vice Chairman 

ED WHITFIELD, Kentucky 

JOHN SHIMKUS, Illinois 

TIM MURPHY, Pennsylvania 

MICHAEL C. BURGESS, Texas 

MARSHA BLACKBURN, Tennessee 

CATHY MCMORRIS RODGERS, Washington 

LEONARD LANCE, New Jersey 

H. MORGAN GRIFFITH, Virginia 

GUS M. BILIRAKIS, Florida 

BILLY LONG, Missouri 

RENEE L. ELLMERS, North Carolina 

LARRY BUCSHON, Indiana 

SUSAN W. BROOKS, Indiana 

CHRIS COLLINS, New York 

JOE BARTON, Texas 

FRED UPTON, Michigan (ex officio) 

GENE GREEN, Texas 

Ranking Member 

ELIOT L. ENGEL, New York 

LOIS CAPPS, California 

JANICE D. SCHAKOWSKY, Illinois 

G.K. BUTTERFIELD, North Carolina 

KATHY CASTOR, Florida 

JOHN P. SARBANES, Maryland 

DORIS O. MATSUI, California 

BEN RAY LUJA ́ N, New Mexico 

KURT SCHRADER, Oregon 

JOSEPH P. KENNEDY, III, Massachusetts 

TONY CA ́ RDENAS, California 

FRANK PALLONE, JR., New Jersey (ex 

officio) 

(V) 

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 

(1) 

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, researchVerDate Nov 24 2008 12:34 Feb 14, 2017 Jkt 037690 PO 00000 Frm 00007 Fmt 6633 Sfmt 6633 F:\MY DOCS\HEARINGS 114\114-158 CHRIS
2 

ers, 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. 

3 

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 

4 

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. 

5 

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. 

6 

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. 

7 

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. 

8 

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. 

9 

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. 

10 

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. 

31 

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 

40 

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. 

68 

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. 

77 

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 

98 

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 

107 

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. 

108 

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. 

109 

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? 

110 

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. 

111 

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. 

112 

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. 

113 

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. 

114 

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. 

115 

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. 

116 

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. 

117 

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 cochairman 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 inVerDate Nov 24 2008 12:34 Feb 14, 2017 Jkt 037690 PO 00000 Frm 00123 Fmt 6633 Sfmt 6633 F:\MY DOCS\HEARINGS 114\114-158 CHRIS
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surance 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. 

119 

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 

120 

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. 

121 

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 

122 

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 reVerDate Nov 24 2008 12:34 Feb 14, 2017 Jkt 037690 PO 00000 Frm 00128 Fmt 6633 Sfmt 6633 F:\MY DOCS\HEARINGS 114\114-158 CHRIS
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imbursing clinicians and their fee for service model for non-face-toface 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 paVerDate Nov 24 2008 12:34 Feb 14, 2017 Jkt 037690 PO 00000 Frm 00129 Fmt 6633 Sfmt 6633 F:\MY DOCS\HEARINGS 114\114-158 CHRIS
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tients 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 imporVerDate Nov 24 2008 12:34 Feb 14, 2017 Jkt 037690 PO 00000 Frm 00130 Fmt 6633 Sfmt 6633 F:\MY DOCS\HEARINGS 114\114-158 CHRIS
125 

tant 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. 

126 

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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