[House Hearing, 116 Congress]
[From the U.S. Government Publishing Office]
REAUTHORIZING VITAL
HEALTH PROGRAMS FOR
AMERICAN FAMILIES
=======================================================================
HEARING
BEFORE THE
SUBCOMMITTEE ON HEALTH
OF THE
COMMITTEE ON ENERGY AND COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED SIXTEENTH CONGRESS
FIRST SESSION
__________
TUESDAY, JUNE 25, 2019
__________
Serial No. 116-51
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Printed for the use of the Committee on Energy and Commerce
govinfo.gov/committee/house-energy
energycommerce.house.gov
__________
U.S. GOVERNMENT PUBLISHING OFFICE
43-926 PDF WASHINGTON : 2022
-----------------------------------------------------------------------------------
COMMITTEE ON ENERGY AND COMMERCE
FRANK PALLONE, Jr., New Jersey
Chairman
BOBBY L. RUSH, Illinois GREG WALDEN, Oregon
ANNA G. ESHOO, California Ranking Member
ELIOT L. ENGEL, New York FRED UPTON, Michigan
DIANA DeGETTE, Colorado JOHN SHIMKUS, Illinois
MIKE DOYLE, Pennsylvania MICHAEL C. BURGESS, Texas
JAN SCHAKOWSKY, Illinois STEVE SCALISE, Louisiana
G. K. BUTTERFIELD, North Carolina ROBERT E. LATTA, Ohio
DORIS O. MATSUI, California CATHY McMORRIS RODGERS, Washington
KATHY CASTOR, Florida BRETT GUTHRIE, Kentucky
JOHN P. SARBANES, Maryland PETE OLSON, Texas
JERRY McNERNEY, California DAVID B. McKINLEY, West Virginia
PETER WELCH, Vermont ADAM KINZINGER, Illinois
BEN RAY LUJAN, New Mexico H. MORGAN GRIFFITH, Virginia
PAUL TONKO, New York GUS M. BILIRAKIS, Florida
YVETTE D. CLARKE, New York, Vice BILL JOHNSON, Ohio
Chair BILLY LONG, Missouri
DAVID LOEBSACK, Iowa LARRY BUCSHON, Indiana
KURT SCHRADER, Oregon BILL FLORES, Texas
JOSEPH P. KENNEDY III, SUSAN W. BROOKS, Indiana
Massachusetts MARKWAYNE MULLIN, Oklahoma
TONY CARDENAS, California RICHARD HUDSON, North Carolina
RAUL RUIZ, California TIM WALBERG, Michigan
SCOTT H. PETERS, California EARL L. ``BUDDY'' CARTER, Georgia
DEBBIE DINGELL, Michigan JEFF DUNCAN, South Carolina
MARC A. VEASEY, Texas GREG GIANFORTE, Montana
ANN M. KUSTER, New Hampshire
ROBIN L. KELLY, Illinois
NANETTE DIAZ BARRAGAN, California
A. DONALD McEACHIN, Virginia
LISA BLUNT ROCHESTER, Delaware
DARREN SOTO, Florida
TOM O'HALLERAN, Arizona
------
Professional Staff
JEFFREY C. CARROLL, Staff Director
TIFFANY GUARASCIO, Deputy Staff Director
MIKE BLOOMQUIST, Minority Staff Director
Subcommittee on Health
ANNA G. ESHOO, California
Chairwoman
ELIOT L. ENGEL, New York MICHAEL C. BURGESS, Texas
G. K. BUTTERFIELD, North Carolina, Ranking Member
Vice Chair FRED UPTON, Michigan
DORIS O. MATSUI, California JOHN SHIMKUS, Illinois
KATHY CASTOR, Florida BRETT GUTHRIE, Kentucky
JOHN P. SARBANES, Maryland H. MORGAN GRIFFITH, Virginia
BEN RAY LUJAN, New Mexico GUS M. BILIRAKIS, Florida
KURT SCHRADER, Oregon BILLY LONG, Missouri
JOSEPH P. KENNEDY III, LARRY BUCSHON, Indiana
Massachusetts SUSAN W. BROOKS, Indiana
TONY CARDENAS, California MARKWAYNE MULLIN, Oklahoma
PETER WELCH, Vermont RICHARD HUDSON, North Carolina
RAUL RUIZ, California EARL L. ``BUDDY'' CARTER, Georgia
DEBBIE DINGELL, Michigan GREG GIANFORTE, Montana
ANN M. KUSTER, New Hampshire GREG WALDEN, Oregon (ex officio)
ROBIN L. KELLY, Illinois
NANETTE DIAZ BARRAGAN, California
LISA BLUNT ROCHESTER, Delaware
BOBBY L. RUSH, Illinois
FRANK PALLONE, Jr., New Jersey (ex
officio)
C O N T E N T S
----------
Page
Hon. Anna G. Eshoo, a Representative in Congress from the State
of California, opening statement............................... 2
Prepared statement........................................... 3
Hon. Michael C. Burgess, a Representative in Congress from the
State of Texas, opening statement.............................. 4
Prepared statement........................................... 6
Hon. Frank Pallone, Jr., a Representative in Congress from the
State of New Jersey, opening statement......................... 7
Prepared statement........................................... 8
Hon. Greg Walden, a Representative in Congress from the State of
Oregon, opening statement...................................... 9
Prepared statement........................................... 10
Hon. Eliot L. Engel, a Representative in Congress from the State
of New York prepared statement................................. 86
Witnesses
Amy Hewitt, Ph.D., Director, Institute on Community Integration,
Universityof Minnesota......................................... 12
Prepared statement........................................... 15
Answers to submitted questions............................... 147
Jill Kagan, Director, Arch National Respite Network and Resource
Center, National Respite Coalition............................. 22
Prepared statement........................................... 24
Patricia Kunz Howard, Ph.D., R.N., Enterprise Director, Emergency
Services, University of Kentucky Healthcare.................... 36
Prepared statement........................................... 38
Answers to submitted questions............................... 150
Joseph A. Bocchini, Jr., M.D., Professor, Department of
Pediatrics, Louisiana State University Health, Sciences Center
at Shreveport.................................................. 45
Prepared statement........................................... 47
Answers to submitted questions............................... 152
Submitted Material
H.R. 776, the Emergency Medical Services for Children Program
Reauthorization Act of 2019.................................... 88
H.R. 1058, the Autism Collaboration, Accountability, Research,
Education, and Support Act of 2019............................. 90
H.R. 2035, the Lifespan Respite Care Reauthorization Act of 2019. 100
H.R. 2507, the Newborn Screening Saves Lives Reauthorization Act
of 2019........................................................ 105
Letter of June 25, 2019, by Angela Geiger, President and CEO,
Autism Speaks, to Mr. Pallone, et al., submitted by Ms. Eshoo.. 115
Letter of February 7, 2019, by Scott Badesch, Executive Director
and CEO, Autism Society, to Mr. Doyle, et al., submitted by Ms.
Eshoo.......................................................... 117
Letter of February 6, 2019, by Andrew Imparato, Executive
Director, and Amy Hewitt, President, Association of University
Centers on Disabilities, to Mr. Doyle, submitted by Ms. Eshoo.. 118
Letter of February 26, 2019, by Kyle E. Yasuda, M.D., President,
American Academy of Pediatrics, to Rep. Chris Smith and Mr.
Doyle, submitted by Ms. Eshoo.................................. 119
Letter of February 11, 2019, by Erin M. Prangley, Director,
National Association of Councils on Developmental Disabilities,
to Mr. Pallone, et al, submitted by Ms. Eshoo.................. 120
Letter of February 14, 2019, by Jill Escher, President, National
Council on Severe Autism, to Mr. Doyle, et al., submitted by
Ms. Eshoo...................................................... 121
Letter of April 18, 2019, by Mary Woolley, President and CEO,
Research America, to Mr. Pallone, et al., submitted by Ms.
Eshoo.......................................................... 123
Letter of June 24, 2019, by Rachel Sher, Vice President, Policy
and Regulatory Affairs, National Organization for Rare
Disorders, to Mr. Pallone and Mr. Walden, submitted by Ms.
Eshoo.......................................................... 125
Letter of June 24, 2019, from Nation's Newborn Screening System,
et al., to Rep. Lucille Roybal-Allard, et al., submitted by Ms.
Eshoo.......................................................... 127
Statement March of Dimes, by Rahul Gupta, M.D., Senior Vice
President and Chief Medical and Health Officer, submitted by
Ms. Eshoo...................................................... 129
Statement of June 25, 2019, by Elisa Seeger, Executive Director,
Aidan Jack Seeger Foundation, submitted by Ms. Eshoo........... 132
Letter of June 25, 2019, by David Certner, Legislative Counsel
and Legislative Policy Director, AARP, to Ms. Eshoo, et al.,
submitted by Ms. Eshoo......................................... 134
Letter of June 24, 2019, from Consortium for Citizens with
Disabilities, et al., to Ms. Eshoo and Mr. Burgess, submitted
by Ms. Eshoo................................................... 136
Letter of June 21, 2019, by Shari B. Robertson, Ph.D., President,
American Speech-Learing-Hearing Association, to Mr. Doyle and
Rep. Chris Smith, submitted by Ms. Eshoo....................... 138
Letter of June 25, 2019, from Autism CARES coalitions, to Mr.
Doyle, et al., submitted by Ms. Eshoo.......................... 139
Letter of April 30, 2019, from EMSC coalitions, to Mr.
Butterfield, et al., submitted by Ms. Eshoo.................... 141
Statement of June 25, 2019, from American Academy of Pediatrics,
to Rep. Chris Smith and Mr. Doyle, submitted by Ms. Eshoo...... 144
REAUTHORIZING VITAL HEALTH PROGRAMS FOR AMERICAN FAMILIES
TUESDAY, JUNE 25, 2019
House of Representatives,
Subcommittee on Health,
Committee on Energy and Commerce,
Washington, DC.
The subcommittee met, pursuant to call, at 10:00 a.m., in
Room 2322 Rayburn House Office Building, Hon. Anna G. Eshoo
(chairwoman of the subcommittee) presiding.
Also present: Representatives Doyle and Soto.
Members present: Representatives Eshoo, Engel, Butterfield,
Matsui, Castor, Sarbanes, Schrader, Kennedy, Welch, Ruiz,
Dingell, Kuster, Kelly, Barragan, Blunt Rochester, Pallone (ex
officio), Burgess (subcommittee ranking member), Upton,
Shimkus, Guthrie, Griffith, Bilirakis, Long, Bucshon, Brooks,
Mullin, Hudson, Carter, Gianforte, and Walden (ex officio).
Staff present: Jeffrey C. Carroll, Staff Director; Waverly
Gordon, Deputy Chief Counsel; Tiffany Guarascio, Deputy Staff
Director; Stephen Holland, Health Counsel; Josh Krantz, Policy
Analyst; Aisling McDonough, Policy Coordinator; Joe Orlando,
Staff Assistant; Kaitlyn Peel, Digital Director; Tim Robinson,
Chief Counsel; Samantha Satchell, Professional Staff Member;
Kimberlee Trzeciak, Chief Health Advisor; C. J. Young, Press
Secretary; Jennifer Barblan, Minority Chief Counsel, Oversight
and Investigations; Mike Bloomquist, Minority Staff Director;
Adam Buckalew, Minority Director of Coalitions and Deputy Chief
Counsel, Health; Robin Colwell, Minority Chief Counsel,
Communications and Technology; Jerry Couri, Minority Deputy
Chief Counsel, Environment and Climate Change; Jordan Davis,
Minority Senior Advisor; Kristine Fargotstein, Minority
Detailee, Communication Technology; Margaret Tucker Fogarty,
Minority Staff Assistant; Melissa Froelich, Minority Chief
Counsel, Consumer Protection and Commerce; Theresa Gambo,
Minority Human Resources/Office Administrator; Caleb Graff,
Minority Professional Staff Member, Health; Brittany Havens,
Minority Professional Staff, Oversight and Investigations;
Peter Kielty, Minority General Counsel; Bijan Koohmaraie,
Minority Counsel, Consumer Protection and Commerce; Tim Kurth,
Minority Deputy Chief Counsel, Communications and Technology;
Ryan Long, Minority Deputy Staff Director; Mary Martin,
Minority Chief Counsel, Energy and Environment and Climate
Change; Sarah Matthews, Minority Press Secretary; Brandon
Mooney, Minority Deputy Chief Counsel, Energy; James
Paluskiewicz, Minority Chief Counsel, Health; Brannon Rains,
Minority Staff Assistant; Zach Roday, Minority Communications
Director; Kristen Shatynski, Minority Professional Staff
Member, Health; Alan Slobodin, Minority Chief Investigative
Counsel, Oversight and Investigations; Peter Spencer, Minority
Senior Professional Staff Member, Environment and Climate
Change; Natalie Sohn, Minority Counsel, Oversight and
Investigations; Danielle Steele, Minority Counsel, Health;
Everett Winnick, Minority Director of Information Technology;
and Greg Zerzan, Minority Counsel, Consumer Protection and
Commerce.
Ms. Eshoo. The Subcommittee on Health will now come to
order.
Good morning, everyone, colleagues and everyone who has
joined us in the hearing room and welcome to our witnesses.
The Chair now recognizes herself for 5 minutes for an
opening statement.
OPENING STATEMENT OF HON. ANNA G. ESHOO, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF CALIFORNIA
Today, our subcommittee is going to consider four bills to
reauthorize very important--critically important public health
programs that support and improve the health and well-being of
children, of adults, and their caregivers. Very important--
caregivers. I know because I've been one. It's not easy.
Our subcommittee's focus for June has been to make sure
that important health programs nearing their expiration are
continued, and in some cases, expanded.
Last week, we held what I thought was a historic hearing
about the need to address expiring Medicaid funds for the
territories. All of the people that reside in the territories
are American citizens.
And earlier in June, we considered extending 12 programs
that strengthen public health and the Medicare and Medicaid
programs.
These hearings have led to results. Last week, the House
passed H.R. 3253, a bipartisan bill that extended several
programs in Medicaid, including the Money Follows the Person
program and the Excellence in Mental Health demonstration
program.
I am grateful to Representatives Dingell and Guthrie for
their work on that bill. We are all grateful to them.
Today, we continue our focus by hearing testimony on four
bipartisan reauthorization bills, most of which were authored
by members of this committee.
These bills support people at particularly vulnerable times
in their lives: when a baby is born, during a pediatric
emergency, after an autism diagnosis, or when serving as the
primary caregiver for a loved one.
Members of this subcommittee have no doubt experienced at
least one of these vulnerable moments. As I just mentioned, I
certainly have and so have millions of Americans.
Too often, these experiences go untold and what can be done
to assist goes unexamined. Today, our witnesses are going to
explain what people in these moments need and how these bills
can help.
The first bill, the Newborn Screening Saves Lives
Reauthorization Act, gives parents the peace of mind that their
newborn will receive comprehensive diagnostic screening no
matter where in the country they are born.
Through these screenings, each year over 12,000 babies live
healthier, longer lives because they receive lifesaving
treatments faster.
The Emergency Medical Services for Children Reauthorization
Act is really, I think, about peace of mind. There is nothing
scarier than when a child is critically ill or injured.
Parents should be able to trust that their child will
receive appropriate medical care no matter what hospital they
go to. This bill reauthorizes the only federal program
dedicated to improving emergency medical care for children.
The Autism CARES Act expands efforts to conduct research
and provide services to people who are autistic with an
important focus on addressing racial disparities. Black and
Latino children with autism tend to be diagnosed later than
white children and are often misdiagnosed.
They have less access to services and are underrepresented
in most autism research. This five-year reauthorization
addresses these disparities as well as other challenges related
to autism research, education, and detection.
Finally, the Lifespan Respite Care Reauthorization Act
helps support the family members. I think this is just so badly
needed in our country. It helps support the family members who
provide full-time care to their aging or disabled loved ones.
Being the unpaid care giver for a loved one can be
physically and emotionally exhausting and isolating. The
average family care giver is a woman who works full-time and is
providing care to both aging parents and children living at
home.
That is--that should take everyone's breath away. Through a
five-year reauthorization of grant funds, this bill allows
caregivers to take a temporary break from their care giving
responsibility.
So today's hearing is about helping people in situations
that too often are overlooked. By making sure we don't treat
children as little adults, that minority children are included
in autism research, and that we are supporting the people,
mostly women, who are taking care of their loved ones every
day, we are taking important steps toward the goal of quality
healthcare for every American.
I stand ready to work with every single one of my
colleagues to make sure these programs are reauthorized.
[The prepared statement of Ms. Eshoo follows:]
Prepared statement of Hon. Anna G. Eshoo
Today, our Subcommittee will consider four bills to
reauthorize critical public health programs that support and
improve the health and wellbeing of children, adults, and their
caregivers.
Our Subcommittee's focus for June has been to make sure
that important health programs nearing their expiration are
continued, and in some cases, expanded. Last week, we held a
historic hearing about the need to address expiring Medicaid
funds for the territories. Earlier in June, we considered
extending 12 programs that strengthen public health and the
Medicare and Medicaid programs.
These hearings led to results. Last week, the House passed
H.R. 3253, a bipartisan bill that extended several programs in
Medicaid, including the Money Follows the Person program and
the Excellence in Mental Health demonstration program. I'm
grateful to Representatives Dingell and Guthrie for their work
on that bill.
Today, we continue our focus by hearing testimony on four
bipartisan reauthorization bills, most of which were authored
by members of this Committee.
These bills support people at particularly vulnerable times
in their lives: when a baby is born, during a pediatric
emergency, after an autism diagnosis, or when serving as the
primary caregiver for a loved one.
Members of this Subcommittee have, no doubt, experienced at
least one of these vulnerable moments. I certainly have, and so
have millions of Americans.
Too often, these experiences go untold and what can be done
to assist goes unexamined. Today, our witnesses will explain
what people in these moments need and how these bills can help.
The first bill, the Newborn Screening Saves Lives
Reauthorization Act, gives parents the peace of mind that their
newborn will receive comprehensive diagnostic screening no
matter where in the country they're born. Through these
screenings, each year over 12,000 babies live healthier, longer
lives because they receive lifesaving treatments faster.
The Emergency Medical Services for Children Reauthorization
Act is about peace of mind. There is nothing scarier than when
a child is critically ill or injured. Parents should be able to
trust that their children will receive appropriate medical care
no matter what hospital they go to. This bill reauthorizes the
only federal program dedicated to improving emergency medical
care for children.
The Autism CARES Act expands efforts to conduct research
and provide services to people who are autistic with an
important focus on addressing racial disparities. Black and
Latino children with autism tend to be diagnosed later than
white children and are often misdiagnosed. They have less
access to services and are underrepresented in most autism
research. This five-year reauthorization addresses these
disparities, as well as other challenges relative to autism
research, education, and detection.
Finally, the Lifespan Respite Care Reauthorization Act
helps support the family members who provide full-time care to
their aging or disabled loved ones.
Being the unpaid caregiver for a loved one can be
physically and emotionally exhausting and isolating. The
average family caregiver is a woman who works full-time and is
providing care to both aging parents and children living at
home. Through a five-year reauthorization of grant funds, this
bill allows caregivers to take a temporary break from their
caregiving responsibilities.
Today's hearing is about helping people in situations that
too often are overlooked. By making sure we don't treat
children as little adults, that minority children are included
in autism research, that we are supporting the people, mostly
women, who are taking care of their loved ones every day, we're
taking important steps toward the goal of quality healthcare
for every American.
I stand ready to work with my colleagues to make sure these
programs are reauthorized.
The Chair now has the pleasure of recognizing Dr. Burgess,
the ranking member of the subcommittee, for 5 minutes for his
opening statement.
OPENING STATEMENT OF HON. MICHAEL C. BURGESS, A REPRESENTATIVE
IN CONGRESS FROM THE STATE OF TEXAS
Mr. Burgess. Thank you, Madam Chair.
As you said, we are here today to discuss the
reauthorization of four public health programs that provide
resources for critical and in some cases, even lifesaving care
for Americans.
These four bills--the Emergency Medical Services for
Children Program reauthorization, the Autism CARES Act, the
Lifespan Respite Care Reauthorization Act, and the Newborn
Screening Saves Lives Reauthorization Act--all make an
immeasurable impact on individuals' lives each and every day.
The Emergency Medical Services for Children Program was
enacted in 1984. This was to provide grant funding to increase
the ability of emergency medical systems to care for pediatric
populations.
Not only does the program provide funding so that emergency
departments and hospitals can equip themselves with appropriate
pediatric medical tools; it enables partnerships and drives
research and innovation in emergency care for children.
Last year, we reauthorized the Children's Hospital Graduate
Medical Education Program and named the bill after one of my
professors, Dr. Benjy Brooks. I remember Dr. Brooks telling me
at the start of my medical career that children are not just
smaller versions of adults.
Treating them is more complex than scaling down the size of
the problem. It requires a whole host of separate tools and
separate knowledge, and that is why this program is so
important, especially at the hours of an emergency.
Similarly, the Newborn Screening Saves Lives Act, which
passed for the first time in 2008, aims to improve the ability
to address pediatric health by standardizing newborn screening
programs.
Newborn screenings are incredibly important in providing
physicians and families with information regarding their baby's
health, enabling them to practice early intervention and
treatment if necessary.
According to the March of Dimes, in 2007, only ten States
and Washington, DC, required infant screening for the
recommended disorders.
Since enactment of the Newborn Screening Saves Lives Act,
all the States, Washington, DC, and Puerto Rico, screen for at
least 29 of the 35 recommended conditions.
This bill would reauthorize funding for the Health
Resources and Services Administration, the Centers for Disease
Control and Prevention, and the National Institute of Health to
ensure that our newborn screening remains comprehensive and
that our nation's healthcare providers are adequately equipped
to conduct these screenings.
Autism CARES builds upon the strong foundation that
Congress laid by passing the Combating Autism Act in 2006. This
legislation expanded research and expanded surveillance and
treatment of autism spectrum disorder and has equipped our
federal agencies with enhanced resources to expand their
knowledge of this complex disorder.
As the number of children diagnosed with autism spectrum
disorder has increased, it is even more important that we
reauthorize this program and ensure the continuation of the
Interagency Autism Coordinating Committee.
As families across our nation navigate raising children
with autism, the Autism CARES Act will provide hope by
authorizing funding for continued research, surveillance, and
education at the NIH, the CDC, and HRSA.
I certainly want to thank our colleague, Mr. Doyle, along
with Chris Smith, who has been a standard bearer for this
legislation certainly as long as I have been here.
The final piece of legislation we are considering today,
the Lifespan Respite Care Reauthorization Act, would
reauthorize funding for the Lifespan Respite Care Program
through fiscal year 2024.
Respite care is critical--it is a critical resource for
caregivers who spend so much of their time helping their loved
one through each day.
Most insurance plans do not cover the cost of respite care.
But the Administration for Community Living and the Department
of Health and Human Services works with the ARCH National
Respite Network and Resource Center to provide respite care to
caregivers across the United States, ensuring that we maintain
access to respite care for our caregivers and for our loved
ones.
I want to thank our witnesses for being here today and
taking their time to testify before the subcommittee today. I
look forward to a productive dialogue and moving these bills to
the subcommittee and ultimately see them signed into law.
I yield back my time.
[The prepared statement of Mr. Burgess follows:]
Prepared statement of Hon. Michael C. Burgess
Thank you, Madam Chair. Today we are here to discuss the
reauthorization of four public health programs that provide the
resources for critical, and in some cases even lifesaving, care
for Americans. These four bills, the Emergency Medical Services
for Children Program Reauthorization Act, the Autism CARES Act,
the Lifespan Respite Care Reauthorization Act, and the Newborn
Screening Saves Lives Reauthorization Act, all make a
measurable impact on individuals' lives each day.
The Emergency Medical Services for Children Program was
enacted in 1984 to provide grant funding to increase the
ability of emergency medical systems to care for pediatric
populations. Not only does this program provide funding so that
emergency departments and hospitals can equip themselves with
the appropriate pediatric medical tools, it enables
partnerships and drives research and innovation in emergency
care for children. Last year we reauthorized the Children's
Hospital Graduate Medical Education Program and named the bill
after Dr. Benjy Brooks. I remember Dr. Brooks telling me at the
start of my medical career that children are not just smaller
versions of adults - treating them is more complex than scaling
down the size of the problem. It requires a whole host of
separate tools and knowledge, and that is why this program is
so important.
Similarly, the Newborn Screening Saves Lives Act, which
passed for the first time in 2008, aims to improve the ability
to address pediatric health by standardizing newborn screening
programs. Newborn screenings are incredibly important in
providing physicians and families with information regarding
their babies' health, enabling them to practice early
intervention and treatment, if necessary. According to March of
Dimes, in 2007, only ten states and Washington, DC required
infant screening for the recommended disorders. Since enactment
of the Newborn Screening Saves Lives Act, all the states, DC,
and Puerto Rico, screen for at least 29 of the 35 recommended
conditions. This bill would reauthorize funding for the Health
Resources and Services Administration, the Centers for Disease
Control and Prevention, and the National Institutes of Health
to ensure that our newborn screening remains comprehensive and
that our nation's healthcare providers are adequately equipped
to conduct the screenings.
The Autism CARES Act builds upon a strong foundation that
Congress laid by passing the Combating Autism Act in 2006. This
legislation expanded research, surveillance, and treatment of
Autism Spectrum Disorder and has equipped our federal agencies
with enhanced resources to expand its knowledge of this complex
disorder. As the number of children diagnosed with Autism
Spectrum Disorder has increased, it is even more imperative
that we reauthorize this program and ensure the continuation of
the Interagency Autism Coordinating Committee. As families
across our nation navigate raising children with autism, the
Autism CARES Act would provide hope by authorizing funding for
continued research, surveillance, and education at the National
Institutes of Health, Centers for Disease Control and
Prevention, and Health Resources and Services Administration
through 2024.
The final piece of legislation we are considering today,
the Lifespan Respite Care Reauthorization Act, would authorize
funding for the Lifespan Respite Care program through fiscal
year 2024. Respite care is a critical resource for caregivers,
who spend much of their time helping their loved ones through
each day. Most insurance plans do not cover the cost of respite
care, but the Administration for Community Living at the
Department of Health and Human Services works with the ARCH
National Respite Network and Resource Center to provide respite
care to caregivers across the United States.
This legislation is vital in ensuring that we maintain
access to respite care for our caregivers and their loved ones.
Thank you to our witnesses for testifying on these
important programs. I look forward to a productive dialogue and
to moving these bills through this Subcommittee.
Ms. Eshoo. The gentleman yields back.
The Chair now recognizes Mr. Pallone, the chairman of the
full committee, for his 5 minutes 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, Madam Chair.
Today, our committee is reviewing four bipartisan bills
that would reauthorize programs that bolster America's medical
research capacity and improve the quality of life for millions
of families.
It's important that we ensure that the authorizations of
these programs do not expire; and I am grateful to the many
members on and off our committee who have worked on these bills
that will extend these programs.
The first bill we are examining reauthorizes the Autism
CARES Act. This reauthorization is important in order to
continue critical research, surveillance, education, early
detection, and intervention programs for people living with
autism spectrum disorder, or ASD, and their families.
The legislation would also expand efforts to support all
individuals with ASD across their lifespan regardless of age
and it would encourage greater research efforts into reducing
disparities among people from diverse racial, ethnic,
geographic, or linguistic backgrounds.
The Committee will also review legislation reauthorizing
the Newborn Screening Saves Lives Act. Each year more than
12,000 babies are born with conditions that might not be
readily apparent, requiring early detection and treatment.
Since it was first signed into law in 2008, this law has
made great strides to ensure that all children receive
recommended screening; and this reauthorization bill will bring
us closer to the goal of every child born in the United States
receiving all recommended screening tests, ensuring better
treatment and long-term health outcomes. I want to thank
Representative Roybal-Allard, who has championed this program
since it was first passed more than ten years ago.
While the newborn screening legislation ensures proper care
for children from the moment they are born, the Emergency
Medical Services for Children Program ensures that children are
safe and receive proper treatment if emergency care is ever
required.
As I am sure our witnesses will attest, treating children
in emergency situations can be very different from treating
adults. If ever a parent or care giver is required to call 911
to get emergency care for a child, they should know their
children will receive the medical care they need. And this
program provides the important research and training necessary
to provide quality emergency care for children no matter where
they are located in the country.
And finally, the committee will review a proposal by
Representative Langevin to reauthorize the Lifespan Respite
Care Program. This program provides much-needed respite
services and educational resources to family caregivers of
children and adults of all ages with special needs and I urge
support for its reauthorization.
I want to thank all the witnesses. I look forward to the
testimony, and now I yield the remainder of my time to
Representative, also known as Coach Doyle, the leader of the
Autism Caucus and a long-time champion of the Autism CARES Act.
Mr. Doyle. Thank you, Mr. Chairman, for yielding your time
to me and I also want to thank Chairwoman Eshoo, my good
friend, for holding this important hearing today.
You know, when Chris Smith and I founded the Autism Caucus
almost 19 years ago, most members of Congress's knowledge of
autism was if they saw the movie ``The Rain Man.''
NIH and CDC weren't spending much money doing any research
and little was known about this disorder. We have come a long
way, but we still have a long way to go.
Back in 2006, when we first started working on the first
CARES Act, over $3.1 billion has now been dedicated to the NIH,
CDC, and HRSA to understand autism spectrum disorders and to
find the right intervention and support for each unique
individual.
Funding has also been used to support the training and
education of health professionals, to provide resources for
families, and coordinate efforts across the federal agencies at
the Interagency Autism Coordinating Committee.
These efforts have translated into real-life support for
individuals and families, although, as I said, we still have a
long way to go.
This room today is full of self-advocates, family, friends,
and neighbors who have worked tirelessly to pass this
legislation, including our witness, Dr. Hewitt.
It is for all of you that we are here today and that we are
especially grateful to because none of this would have happened
without your support and persistence and pushing us to keep
going further and further.
So I want to thank not only all the advocates in the
audience and the parents. The parents are the reason we have
come this far.
You deal with the parent of an autistic child, you're
dealing with someone determined to make sure that this Congress
does what we need to do and we are going to try to continue to
do that.
Madam Chair, I want to thank you. I came to your earlier
and asked for this hearing and you have been very gracious, as
has Chairman Pallone. I hope that we can move quickly to markup
in the subcommittee and full committee and get this bill passed
as soon as possible with the commensurate authorization and
funding levels.
So I thank you very much and I yield back my time.
[The prepared statement of Mr. Pallone follows:]
Prepared statement of Hon. Frank Pallone Jr.
Today our Committee is reviewing four bipartisan bills that
would reauthorize programs that bolster America's medical
research capacity and improve quality of life for millions of
families. It's important that we ensure that the authorizations
of these programs do not expire, and I'm grateful to the many
members on and off our Committee who have worked on these bills
that will extend these programs.
The first bill we are examining reauthorizes the Autism
CARES Act. This reauthorization is important in order to
continue critical research, surveillance, education, early
detection, and intervention programs for people living with
Autism Spectrum Disorder, or ASD, and their families. The
legislation would also expand efforts to support all
individuals with ASD across their lifespan, regardless of age.
And it would encourage greater research efforts into reducing
disparities among people from diverse racial, ethnic,
geographic, or linguistic backgrounds.
The Committee will also review legislation reauthorizing
the Newborn Screening Saves Lives Act. Each year, more than
12,000 babies are born with conditions that might not be
readily apparent, requiring early detection and treatment.
Since it was first signed into law in 2008, this law has made
great strides to ensure that all children receive recommended
screening. This reauthorization bill will bring us closer to
the goal of every child born in the United States receiving all
recommended screening tests, ensuring better treatment and
long-term health outcomes. I want to thank Representative
Roybal-Allard, who has championed this program since it was
first passed more than ten years ago.
While the Newborn Screening legislation ensures proper care
for children from the moment they are born, the Emergency
Medical Services for Children, Program ensures that children
are safe and receive proper treatment if emergency care is ever
required. As I'm sure, our witness will attest, treating
children in emergency situations can be very different from
treating adults. If ever a parent or caregiver is required to
call 911 to get emergency care for a child, they should know
that children will receive the medical care they need. This
program provides the important research and training necessary
to provide quality emergency care for children no matter where
they are located in the country.
Finally, the Committee will review a proposal by
Representative Langevin to reauthorize the Lifespan Respite
Care program. This program provides much needed respite
services and educational resources to family caregivers of
children and adults of all ages with special needs and I urge
support for its reauthorization.
I thank all of the witnesses for being here today and look
forward to their testimony. I now yield the remainder of my
time to Representative Doyle, the leader of the Autism Caucus
and a longtime champion of the Autism CARES Act.
Thank you.
Ms. Eshoo. The gentleman yields back.
I would say to Mr. Doyle promises made, promises kept.
Thank you for your magnificent work.
It's a pleasure to recognize the ranking member of the full
committee, the gentleman from Oregon, Mr. Walden.
OPENING STATEMENT OF HON. GREG WALDEN, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF OREGON
Mr. Walden. Good morning, Madam Chair.
Ms. Eshoo. Good morning.
Mr. Walden. Thanks for having this hearing. Thanks to you
and Ranking Member Burgess for your work on this and the other
members of the committee, Mr. Doyle, and certainly off the
committee, Chris Smith has been so involved in this autism
effort.
The four bipartisan bills we are considering today are a
great start. Obviously, we all know we have some more work to
do to fund our nation's community health centers and special
diabetes programs and some other priorities I know the
committee is working on.
So I want to thank our witnesses today for helping us
better understand these bills and issues. We look forward to
your testimony. Our work will be improved by your
participation.
At this hearing, as you've heard, we will consider four
bipartisan bills to reauthorize these common-sense public
health programs that make a real difference for patients, for
families, and for communities.
And, as you've heard, H.R. 1058, the Autism CARES Act of
2019 introduced by Representative Smith and Doyle, the number
of children diagnosed with autism spectrum disorder has
increased over the last several years and part of this trend
may be due to improvements in diagnosis and data collection.
But, we need to learn more about autism spectrum disorders
and identify them at a younger age, and we need to continue our
push to more effectively treat this spectrum of conditions.
The second bill, as you've heard, the Newborn Screening
Saves Lives Reauthorization Act of 2019, authorizes a five-year
extension of this really important program to screen newborns,
to boost transparency, to get better data, and to have states
participate in the best practices for newborn screening. So I
think this one is really important as well.
And then H.R. 776, the Emergency Medical Services for
Children Program Reauthorization Act, is the only federal
program I believe that specifically focuses on addressing the
unique needs of children in emergency medical systems.
These grants represent an investment in research regarding
best practices, state partnerships to boost capacity for
pediatric care, and better data to inform innovation, all with
the goal of improving care for our children in the healthcare
system across our nation.
And then, finally, H.R. 2035, the Lifespan Respite Care
Reauthorization Act of 2019, this program is really important
to me; first, in 1997, my home state of Oregon became the first
state in the nation to create a Lifespan respite program to
provide relief to family caregivers.
Other states soon followed suit and since 2009, the Federal
Government has offered grants, aid, and the implementation of
these programs. I've often joined my colleagues on both sides
of the aisle to boost resources for family caregivers because
as taking care of a child or an adult with special needs is an
important duty.
Now I am pleased to be considered--to be considering the
five-year reauthorization of the National Respite Care Program
to help reduce the burnout and stress associated with caring
for a family member.
So, in closing, thanks again to our witnesses. We
appreciate your being here today and thanks to Chairwoman Eshoo
and Ranking Member Burgess for this hearing.
And I yield back the balance of my time.
[The prepared statement of Mr. Walden follows:]
Prepared statement of Hon. Greg Walden
Thank you, Chairwoman Eshoo and Ranking Member Burgess, for
holding this hearing today. I'm glad we're getting to work on
extending several key healthcare programs that expire at the
end of the fiscal year, which is just a few months away. The
four bipartisan bills we are considering today are a great
start. But we have more work to do to fund our nation's
community health centers, special diabetes programs, and other
priorities. Thank you to our witnesses for being here today,
and I look forward to hearing from you on the bills before us.
At this hearing, we'll consider four bipartisan bills to
reauthorize commonsense public health programs that have a real
effect on patients in our communities.
First up is H.R. 1058, the Autism CARES Act of 2019,
introduced by Representative Chris Smith (R-NJ) and
Representative Mike Doyle (D-PA). The number of children
diagnosed with Autism Spectrum Disorder has increased over the
last several years. Part of this trend may be due to
improvements in diagnosis and data collection. As we learn more
about Autism Spectrum Disorders and identify them at a younger
age, we must continue our push to more effectively treat this
spectrum of conditions.
The second bill we'll consider today is H.R. 2507; the
Newborn Screening Saves Lives Reauthorization Act of 2019,
introduced by Representative Lucille Roybal-Allard (D-CA),
Representative Mike Simpson (R-ID), Representative Katherine
Clark (D-MA), and Representative Jaime Herrera Beutler (R-WA).
This bill authorizes a five-year extension of newborn screening
programs to boost transparency, data collection, and state
participation in newborn screening best practices. As our
understanding of these conditions has improved over the years,
we have realized just how much early intervention care can
improve the outcomes for newborns. State-run newborn screening
programs are the starting point for our children to live full,
healthy lives, and I am glad we're taking up this effort in a
bipartisan way.
We're also considering H.R. 776, the Emergency Medical
Services for Children Program Reauthorization Act, introduced
by Representative Peter King (R-NY), Representative Kathy
Castor (D-FL), and Representative Chris Stewart (R-UT), and
Representative G. K. Butterfield (D-NC). This program is the
only federal grant program specifically focused on addressing
the unique needs of children in emergency medical systems.
These grants represent an investment in research regarding
best practices, state partnerships to boost capacity for
pediatric care, and better data to inform innovation--all with
the goal of improving care for our children in healthcare
systems across the country.
Finally, we'll examine H.R. 2035, the Lifespan Respite Care
Reauthorization Act of 2019, authored by Representative Jim
Langevin (D-RI) and Representative Cathy McMorris Rodgers (R-
WA). This program is very important to me: first, because in
1997, my home state of Oregon became the first state in the
nation to create a Lifespan Respite Program to provide relief
to family caregivers. Other states soon followed suit; and
since 2009, the Federal Government has offered grants to aid in
the implementation of these programs. I have often joined my
colleagues on both sides of the aisle to boost resources for
family caregivers taking care of a child or adult with special
needs. Now, I'm pleased to be considering the five-year
reauthorization of the national respite care program, to help
reduce the burnout and stress associated with caring for a
family member.
In closing, let me once again thank our witnesses for being
here today and Chairwoman Eshoo and Ranking Member Burgess for
this hearing. I yield back the balance of my time.
Ms. Eshoo. The gentleman yields back. I know that all the
Members have fabulous opening statements and remind you that
pursuant to committee rule, your written opening statements
shall be made part of the record. So submit those for the
record.
I now would like to introduce the witnesses for today's
hearing and thank you for joining us today. We depend on you
for expertise and we have four of you.
The first, Dr. Amy Hewitt, the Director of the Institute on
Community Integration, College of Education and Human
Development at the University of Minnesota, welcome to you and
our collective thanks to you.
Ms. Jill Kagan, the Director of ARCH National Respite
Network and Resource Center of National Respite Coalition.
Thank you to for your fine work and for being here.
Dr. Patricia Kunz Howard, the President of Emergency Nurses
Association--thank you to you and a warm welcome--and Dr.
Joseph Bocchini, Professor of Pediatrics, Louisiana State
University Health Sciences Center at Shreveport. Thank you to
you, Doctor, and a warm welcome.
At this time the Chair is going to recognize each witness
for 5 minutes to provide your opening statements. Bring the
microphones close to you so that everyone can hear you very
well, and when it's time to testify, make sure you turn it on.
The red light means stop. You'll see green, yellow, and red
light. Don't run the red light. How's that?
So with that, we will start with Dr. Amy Hewitt. Again,
welcome, and our thanks to you for being here today to offer
your expert testimony. You have 5 minutes.
STATEMENTS OF AMY HEWITT, PH.D., DIRECTOR, INSTITUTE ON
COMMUNITY INTEGRATION, UNIVERSITY OF MINNESOTA; JOSEPH
BOCCHINI, M.D., PROFESSOR, DEPARTMENT OF PEDIATRICS, LOUISIANA
STATE UNIVERSITY HEALTH, SHREVEPORT; PATRICIA KUNZ HOWARD,
PH.D., RN, PRESIDENT, EMERGENCY NURSES ASSOCIATION, DIRECTOR,
EMERGENCY SERVICES, UNIVERSITY OF KENTUCKY HEALTHCARE; JILL
KAGAN, DIRECTOR, ARCH NATIONAL RESPITE NETWORK AND RESOURCE
CENTER
STATEMENT OF AMY HEWITT, Ph.D.
Dr. Hewitt. Thank you.
Chairwoman Eshoo, Ranking Member Burgess, and distinguished
members of the subcommittee, thank you for inviting me here to
testify about H.R. 1058 that will reauthorize the CARES Act.
It's a great honor to appear here before you today.
I am the Director of the Institute on Community Integration
at the University of Minnesota. Our center is privileged to
have several CARES projects, including an Autism and
Developmental Disabilities Monitoring program, or the ADDM, the
Centers for Disease Prevention and Control ``Learn the Signs
Act Early'' campaign, and a Leadership Education in
Neurodevelopmental and Related Disabilities program known as
the LEND.
I am also the proud alum of a LEND program, having received
training at Riley Child Development Center in Indiana over 30
years ago.
I am the current president of the board of directors of the
Association of University Centers on Disabilities, a network
that includes all of the LEND programs and a national resource
center that provides technical assistance to CARES programs.
Autism and related neurodevelopmental disabilities pose
significant challenges to communities across the United States.
Our ADDM data estimates that 1 in 59 children have autism and,
roughly, 1 in 6 children have related developmental
disabilities.
What this means is that it's highly likely that everyone in
this room knows someone that has a family member with autism or
a developmental disability.
While I am here in my professional role as a researcher, I
understand these issues as a family member, too. My brother-in-
law, Nathan, is 45 years old and he has autism.
He reminds me daily that early intervention is critical and
that children grow up to become working adults who want good
lives in their communities.
We have so much to learn from autistic adults about the
systems we create to support people across their lives. CARES
has helped to build a critical infrastructure addressing our
understanding of autism.
It supports the ADDM network funded by the CDC to estimate
the number of children and other developmental disabilities.
ADDM's findings identify characteristics of children with
autism and the age at which they were evaluated and diagnosed.
Reauthorization provides hope that in Minnesota, we will be
able to increase our geographic area and gather Lifespan data.
This is important because, in addition to demographic
categories routinely studied by the CDC, we want to understand
prevalence for our Somali, Hmong, and other immigrant
populations.
Expansion of the geographic area is the only way we will be
able to know with certainty if differences exist among these
groups.
The CARES Act also funds workforce programs. Nationally,
there's a serious shortage of personnel trained about autism.
LEND programs provide advanced training to fellows from a broad
array of disciplines in the identification, assessment, and
treatment of children, youth, and young adults with
developmental disabilities, including ASD.
The developmental behavioral pediatrics training program
trains the next generation of physicians to build capacity to
develop and provide evidence-based interventions. CARES
reauthorization includes a priority to award DBP programs in
rural communities, which is also important.
CARES authorizes the Interagency Autism Coordinating
Committee, known as the IACC committee, to coordinate federal
efforts to advise the secretary of health and human services on
issues related to ASD.
With both federal and public members, including people with
lived experience of autism, the IACC helps to ensure that a
wide range of perspectives are represented on the committee.
Reauthorization expands the IACC membership to include
representatives from the Departments of Labor, Justice,
Housing, and Urban Development.
CARES programs have intentionally focused on strategic
partnerships in states with maternal and child health Title V
programs, resulting in more effective and coordinated
leadership with coalitions.
Actor early ambassadors work with programs to reach diverse
communities with the focus on parent-to-parent networking, and
in Minnesota, we see how the alignment of research and systems
ensures that we are more effectively supporting people.
CARES supports NIH-funded research through autism centers
of excellence, which conduct research on possible treatments
and interventions, then report findings to the national
database on autism research.
This research answers critical questions that influence
policy.
CARES requires an evaluation report on both progress and
needs. Evaluation findings were used to introduce new
requirements to report--so that the evaluation reporting
includes information on community-based services, reflecting a
growing need to expand research, service, and collaboration
across all ages.
In closing, the CARES shows the commitment from each of you
to provide a coordinated federal response to the needs of
individuals with ASD in your districts throughout the United
States.
This legislation has answered critical questions to address
disparities through research, public health surveillance and
workforce development.
I urge you to renew the investment and enact a five-year
reauthorization before it expires on September 30th.
Thank you.
[The prepared statement of Dr. Hewitt follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you, Dr. Hewitt.
I want to thank all the advocates that are here. We all
know what to do from inside the institution. But the truth
about the Congress is, is that we are not a proactive
institution. We are reactive. So there always has to be a push,
push, push, from the outside, and pushing you are and we are
going to respond to it. So thank you for being here. You're
really important.
Ms. Kagan, welcome to you and you have 5 minutes for your
testimony.
STATEMENT OF JILL KAGAN
Ms. Kagan. Thank you.
Chairwoman Eshoo, Ranking Member Burgess, and distinguished
members of the subcommittee, I am Jill Kagan, director of the
ARCH National Respite Networking and Resource Center, and I am
testifying today on behalf of the National Respite Coalition,
which is the policy division of ARCH.
I want to thank you for this opportunity to testify today
in support of the Lifespan Respite Care Program. I would also
like to thank our original co-sponsors of the legislation to
reauthorize the program, Representative Jim Langevin and
Representative Cathy McMorris Rodgers, for their leadership in
support of the bill.
As many of you have already talked about; you know what
respite is. It is the planned or emergency care provided to an
individual of any age with special needs in order to provide
temporary relief to the family caregivers.
For the more than 40 million family caregivers providing
care to a child or adult with a disability or chronic
condition, respite is a lifeline.
Care giving is a lifespan issue, with more than half of
family caregivers caring for someone under the age of 75
,including adults with multiple sclerosis, adults with
intellectual and developmental disabilities or mental health
issues, young veterans with PTSD or traumatic brain injury, and
nearly 14 million children with special healthcare needs
including children and adults with autism.
Respite is among the most frequently requested services by
family caregivers by helping to reduce stress, caregiver
burden, and social isolation. The beneficial effects of respite
on family health and--family caregiver health and well-being on
their family's quality of life and also helping to reduce or
avoid more costly out-of- home placements, these benefits are
well documented.
Yet, 85 percent of family caregivers of adults and a
similar percentage of parents of children are not receiving
services at all because of fragmented and narrowly-targeted
services, long waiting lists, prohibitive costs to families who
don't qualify for public programs, and the lack of information
about respite--what it is, how to find it, and how to use it.
Moreover, a critically short supply of well-trained respite
providers and respite program options may prohibit a family
from using this service that they so desperately need.
By providing more respite care and making it easier to
find, pay for, and use, Lifespan respite care programs are
helping to overcome many of these barriers.
The Administration for Community Living awards grants to
states on a competitive basis. To date, 37 States and the
District of Columbia have received at least one grant since
2009, when the program was first funded; and the Lifespan
respite grantee activities have really evolved from that time
from systems building of coordinated statewide respite programs
to now really allowing states to provide more direct services.
Eighteen states have helped families not eligible for
public programs or on waiting lists actually pay for a planned
and emergency respite through consumer-directed respite voucher
programs.
Other states have provided respite by expanding community,
faith-based, and volunteer respite services. States are engaged
in the very important role of building capacity through
recruiting and training respite providers and volunteers and
partnerships between state and local agencies are able to them
maximize use of existing resources that may also exist in a
state.
We are very pleased to announce too that states are
collaborating with aging and disability resource centers or
states' ``no wrong doors'' systems to increase access to
respite services information and providers, and other grantees
have been very successful with their partners in leveraging
additional federal, state, and private dollars because of their
federal grants.
The National Respite Coalition and 47 national
organizations have endorsed H.R. 2035 to ensure the program's
stability, allow states to continue to serve more family
caregivers and provide opportunities for new states to
participate.
Current law gives states the flexibility and local control
to meet the program's requirements so that each state can
determine the best approaches to address their own unique
identified needs for respite and provide critical gap-filling
services.
The Lifespan Respite Care Program is the only federal
program that prioritizes respite for all ages and conditions,
allows states to use funds for startup of new, innovative, and
evidence-informed programs and supports training of respite
providers to address the direct care worker shortage.
This is a very tall order, but states are meeting the
challenges head on and we urge Congress to support its initial
investment in these successful efforts and reauthorize the
program in a timely way.
Thank you very much.
[The prepared statement of Ms. Kagan follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you, Ms. Kagan.
I would now like to recognize Dr. Kunz Howard for your
testimony. You have 5 minutes, and welcome and thank you again.
STATEMENT OF PATRICIA KUNZ HOWARD, Ph.D., R.N.
Dr. Howard. Thank you.
Chairwoman Eshoo, Ranking Member Burgess, and distinguished
members of the subcommittee, thank you for inviting me to
testify at this important hearing on vital healthcare programs
that serve American families and in support of the Emergency
Medical Services for Children Program Reauthorization Act of
2019.
I am Patricia Kunz Howard, the Enterprise director for
emergency services at the University of Kentucky healthcare,
which includes a full-service academic medical center and a
community hospital in Lexington.
Between the two emergency departments, we treat over 35,000
children each year and for the past 29 years, I have also
served as the EMS educator for Lexington Fire and Emergency
Services, training paramedics.
In addition, I am the 2019 president of the Emergency
Nurses Association, the largest professional healthcare
organization dedicated to improving emergency care with over
44,000 members worldwide.
As a registered nurse and educator, I have dedicated my
professional career to providing the best possible care for all
patients regardless of their age, and as a pediatric clinical
nurse specialist, I know that caring for children is one of the
greatest responsibilities we have as healthcare professionals.
In the United States, children and adolescents make up 27
percent of all emergency department visits. As you know, this
patient population presents unique challenges for healthcare
professionals during an emergency requiring specific types of
equipment and often different medication dosage regimens.
Nevertheless, this reality is that many facilities and
healthcare professionals in the most vulnerable areas of our
country would struggle to maintain these resources if not for
the existence of the EMSC program.
As you know, in 1984, Congress recognized the disparities
that existed in emergency care between adult and pediatric
patients and created the EMSC for Children program.
More than 30 years later, it is the only federal program
wholly devoted to improving pediatric emergency care. The EMSC
program enhances care no matter where children live, travel, or
attend school.
It accomplishes this by helping ensure that hospitals and
EMS systems have access to pediatric appropriate training,
education, and resources.
Under the EMSC state partnership grants, funds are made
available to each state EMSC program which in turn are used to
help hospitals and EMS systems meet performance measures to
improve pediatric readiness and to deliver quality care to
children.
For example, state partnership grants have helped develop
interfacility transfer guidelines that define the process for
selecting the correct hospital for the pediatric patient to be
transferred to, ensuring appropriate staffing on the transport
vehicle to match the needs of the child in their clinical
condition as well as having the plans to help immediately
facilitate that transfer to the receiving facility.
These guidelines have assured higher quality care for ill
or injured pediatric patients and ultimately better outcomes.
EMSC support has also been used to help with the purchase of
specialized equipment and supplies.
One great example is the various types and sizes of
lifesaving airway equipment used by EMS to be able to treat a
tiny pre-term infant or a much larger child.
Another key component of the EMSC program is the Pediatric
Emergency Care Applied Research Network, or PECARN, which is
the first federally supported research initiative focused on
improving emergency care for children.
Because of the research conducted by PECARN, advancements
have been made in many treatment options for children. One of
these that is so important in emergency care is the pediatric
head injury and treatment algorithm that was developed to lead
to the reduction in unnecessary radiation exposure by CT scans
when children have suffered minor head injuries, which helps
reduce their long-term risk for cancer.
EMSC-developed research has also led to better
identification of adolescents at risk for substance abuse and
improved strategies to quickly identify children suffering from
bacterial infections, which have an increased risk of sepsis.
As an emergency nurse, I know from first-hand experience
what a critical resource the EMSC program is to facilities
across the country. Working as a team, nurses, EMS, and
physicians are better able to manage all types of pediatric
emergencies thanks to the resources and training that the EMSC
programs have helped to provide.
In my home state of Kentucky, the EMSC program has
sponsored education for pre-hospital as well as in-hospital
professionals regarding emergency care for children.
Ambulance services now have access to correct equipment and
specialized knowledge, thanks to this program. Without this
program, the critical care we are to provide for children in
Kentucky and I am sure in other states would suffer.
Emergency nurses and our professional colleagues
passionately care about providing the highest quality care to
all of our patients and we strive for them to have the best
outcomes possible for their illnesses and injuries.
This is especially the case for those who are among the
most vulnerable in our society and who are in need of
specialized, high-quality healthcare services--our children.
Thank you again for providing me the opportunity to
represent the emergency care community and speak in support of
reauthorizing the Emergency Medical Services for Children
program.
[The prepared statement of Dr. Howard follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you very much, Dr. Kunz Howard.
I would now like to recognize Dr. Bocchini. You have 5
minutes for your testimony. Am I pronouncing your name?
Dr. Bocchini. That is correct, yes.
Ms. Eshoo. Thank you.
Dr. Bocchini. Thank you.
Ms. Eshoo. OK.
STATEMENT OF JOSEPH BOCCHINI, Jr., M.D.
Dr. Bocchini. Madam Chairwoman Eshoo, Ranking Member
Burgess, and distinguished Health Subcommittee members, thank
you for inviting me to speak before this committee today.
I have recently had the privilege of serving an eight-year
term as the chairman of the Advisory Committee on Heritable
Disorders in Newborns and Children, the advisory committee
whose current activities are determined by the Newborn
Screening Saves Lives Act of 2014.
I have seen the benefits of this act through the eyes of
the Advisory Committee, in my clinical practice, and in the
infants whose lives have been improved and, in many cases,
saved through the prompt diagnosis and treatment of conditions
identified by newborn screening.
The Newborn Screening Saves Lives Reauthorization Act of
2019 is a critical piece of legislation which supports one of
the most successful public health disease prevention programs
in the United States.
Congress first enacted the Newborn Screening Saves Lives
Act in 2008 with the realization that federal input was
essential to developing a uniform, evidence-based national
newborn screening panel that would lead to the universal
application by states of the new technologies and treatments
becoming available for a number of serious and life-threatening
conditions affecting infants and children which were not
apparent at birth.
Congress also recognized that federal agencies served an
important role in supporting states through a variety of
mechanisms including educational and training activities,
research, technical assistance, and infrastructure development.
Over the past 11 years, federal input from the Advisory
Committee, approval of its recommendations by the secretary of
the Department of Health and Human Services, research supported
by the National Institute of Health, laboratory improvement
efforts by the Centers for Disease Control and Prevention, and
funding to help improve state screening programs from the
Health Resources and Services Administration have greatly
benefited infants and families and by helping to advance this
highly successful state-based public health system.
Although each of the conditions recommended for newborn
screening is considered rare, one in approximately 300--every
300 screened newborn infants is found to have a condition for
which treatment is beneficial.
Early diagnosis enables the infants identified through
newborn screening to receive the treatments necessary to
prevent serious and often permanent developmental and other
complications or death.
For many of the conditions on this panel, early diagnosis
and treatment not only benefit the infant but it cost saving.
In 2010, the secretary of HHS officially adopted the first
recommended uniform screening panel, our RUSP, which included
29 primary conditions and primary, secondary conditions.
Within a few years, all states were screening for these
conditions. With the screening panel, as has been mentioned
before, approximately 12,500 newborn infants were being
identified annually with serious genetic, endocrine, and
metabolic conditions, including congenital hypothyroidism,
cystic fibrosis, sickle cell disease, and hearing loss as well
as a number of other metabolic conditions that are
significantly rarer.
Rapid advances in diagnosis and treatment has led to
inclusion of six additional conditions on the RUSP. They
include severe combined immunodeficiency, critical congenital
heart disease, Pompe disease, mucopolysaccharidosis type 1,
adrenoleukodystrophy, and, most recently, spinal muscular
atrophy.
Much remains to be done to continue to improve the capacity
and effectiveness of the newborn screening system. H.R. 2507 as
written, will strengthen newborn screening programs in
individual states, help meet the research and clinical
challenges in this rapidly advancing field, and have a
significant positive impact on the health and well-being of the
nearly four million children born each year in the United
States and its territories.
I expect that new screening and diagnostic tests and
therapies will soon bring more conditions to the Advisory
Committee for its evidence-based evaluations.
H.R. 2507 will also strengthen the efforts to evaluate new
technologies and to bring new conditions to newborn screening
programs by increasing needed funding for the efforts of HRSA,
the NIH through the Hunter Kelly Newborn Screening Research
Program, and the CDC.
The additional funding will allow for enhanced technical
assistance and financial support for states, which will reduce
barriers to implementation of new conditions and shorten the
time needed for states to begin screening once a condition is
approved for inclusion on the RUSP.
Once again, I thank you for the opportunity to provide
testimony and support of this reauthorization act. I look
forward to your questions.
Thank you.
[The prepared statement of Dr. Bocchini follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Ms. Eshoo. Thank you very much, Doctor. It's exciting to
hear a first-hand report from someone on the--on the--is it a
commission?
Dr. Bocchini. A committee. Yes. Thank you.
Ms. Eshoo. A committee?
Dr. Bocchini. Yes.
Ms. Eshoo. Wonderful. So now we will--we've concluded the
testimony of the witnesses. I want to welcome Congressman Chris
Smith, who has joined us. He has been an indefatigable leader
on the issue of the Autism CARES Act and we are thrilled that
you're here today and that we are taking up legislation.
Congressman Doyle was here earlier. So welcome to you and
thank you for your wonderful work.
The Chair is going to recognize herself for 5 minutes to
ask questions.
Dr. Hewitt, do we know what causes autism?
Dr. Hewitt. There isn't a single cause of autism. We know
that there is an intersection between genetics. We know there's
a genetic component, and the importance of the research that
the CARES Act would fund would be to help us continue to
explore what causation is but, more importantly, to make sure
that we are identifying children earlier and getting them
connected to services and supports in their community.
Ms. Eshoo. So now you mentioned your brother- in-law who
is, what, you said, I think 43 years----
Dr. Hewitt. Forty-five.
Ms. Eshoo. Forty-five, and when was he diagnosed?
Dr. Hewitt. Unfortunately, Nathan wasn't diagnosed until he
was 17.
Ms. Eshoo. And so what--in that gap of--what did he end
up----
Dr. Hewitt. So had he been diagnosed earlier----
Ms. Eshoo. How was he held back, given the gap that you
describe?
Dr. Hewitt. So for Nathan, he really received inappropriate
educational services his entire 12 years of education. He ended
high school without a high school diploma and if he had early
intervention I think his life outcomes would have been
substantially different than they are now.
Ms. Eshoo. Yes. So where do you think we are in terms of--
how would you--what kind of score would you give the United
States of America on the progress that we've made on autism
both in terms of early detection and then the services that are
needed? I think that's kind of the $64,000 question to me.
[Laughter.]
Dr. Hewitt. It's a good question.
Ms. Eshoo. My sister teaches children with autism and she
has taught me a lot.
Dr. Hewitt. Yes. I think we are doing much better at
identifying children early. If you look at the ADDM data, it
shows that we are inching towards identifying kids younger and
then some states are doing better than other states. But we are
making progress in early identification and getting kids
connected to services.
Ms. Eshoo. Well, thank you for everything that you have
done to move the needle.
Ms. Kagan, I am struck by the statistic in your testimony
that 85 percent of family caregivers of adults are not
receiving any respite services whatsoever. In my previous life,
before coming to Congress, I was a member of a county Board of
Supervisors and established more than one adult day healthcare
center so that the caregivers would have some rest.
And when I look at the dollars, and there is an increase in
this, but for 50 States it's not even a million dollars for
each state.
So we are, I think, on the right pathway but how many
states did you say have absolutely no respite services
whatsoever?
Ms. Kagan. Well, there have been 37 States and the District
of Columbia that have received at least one Lifespan respite
grant. So we still have a large chunk of states that have never
received a Lifespan grant.
There are other federal sources of funding for respite. But
as I mentioned, Medicaid home and community-based waivers, for
example, are often very narrowly targeted, don't exist across
states in the same way, and have long waiting lists. Programs
like National Family Caregiver Support Program also offer
important respite but only primarily for the aging population--
not only but primarily. So----
Ms. Eshoo. Well, Health Affairs found that by 2029 many
seniors will be what they term in the forgotten middle where
they won't qualify for Medicaid but also won't be able to
afford to pay for long-term care.
So my question to you is how can family caregivers help
address that problem and the larger question is what do you
recommend Congress should be doing now to create a better
system of support for the caregivers not only today but for
tomorrow?
Ms. Kagan. Absolutely. I think the Lifespan respite care
program, of course, is an important first step because it not
only helps pay for respite for families who don't qualify for
these public programs----
Ms. Eshoo. Right.
Ms. Kagan [continuing]. But have exorbitant expenses
related to their care giving duties or had to give up
employment in order to stay home and provide care. But Lifespan
respite also allows states to use their funds to address the
capacity issue.
We have a tremendous crisis in direct service worker
shortages and Lifespan respite programs; most of the states are
doing some kind of recruiting and training of respite workers
as well as volunteers because we are just not going to have the
bodies.
Ms. Eshoo. It's overwhelming--it really is--for the care.
Thank you to each one of you. I wish I had more time. I
don't, and I now would like to yield 5 minutes to Dr. Burgess,
the ranking member of the subcommittee, for his questions.
Mr. Burgess. Thank you, Madam Chairwoman.
Ms. Eshoo. We need a doctor for the doctor. He doesn't feel
well today.
Mr. Burgess. Well, we went late in Rules Committee last
night, so I used up all my vocal abilities last night.
So, Dr. Bocchini and Dr. Hewitt, you're sitting on opposite
ends of this panel. But, Dr. Bocchini, maybe you want to
develop an early screening method for the autism team and be
able to provide Kim's therapy before they leave the newborn
nursery. Is that--is that ever on your horizon?
Dr. Bocchini. I am not aware of it. Certainly, there are a
number of known genetic changes that have been associated with
autism and I am not sure of the total percentage of autistic
cases that are associated with specific gene abnormalities.
But, there is a panel that can be used to diagnose some of
the patients--some of the individuals with autism. Whether a
newborn screening test would become an appropriate way to
evaluate that I think is something to be considered for the
future.
Mr. Burgess. So when you went through your last--I mean,
that's fascinating. I didn't realize severe combined
immunodeficiency disease was one of those things that you can
detect.
When I was in medical school, and it was a long time ago,
but David the Bubble Boy, his doctor, was in Houston and we,
through a rudimentary telecommunications hookup, got to
interview David the Bubble Boy when he was still in--being
protected from all things in the outside world.
But now you can detect that disease as part of newborn
screening?
Dr. Bocchini. Yes, that is certainly one of the recent
successes in newborn screening. Severe combined
immunodeficiency is the disorder that the Boy in the Bubble
had. It is a complete absence of an immune system and if those
patients develop an infection, which they do quite early, it's
typically very difficult to treat and is usually fatal.
If you find these children before they become infected and
that's what newborn screening does in most cases, you can
provide a reconstitution of the immune system by a bone marrow
transplant or umbilical stem cell transplant or by enzyme
replacement in some cases.
And the recent data from California and from other states
have indicated that we are at a 90-plus percent recovery
success rate in having those children live and, in many cases,
with a fully reconstituted immune system.
So it's a very significant success story.
Mr. Burgess. And thank you for sharing that with us. The
spinal muscular atrophy, which is one of the things on your
list, and the recent FDA approval of a new therapy that will be
life-changing, I understand, for those kids, so the work that
you do in identifying those children early is just so critical.
Dr. Bocchini. Yes, I agree. I think that there have been
some remarkable advances in the treatment of spinal muscular
atrophy and the committee in 2018 did recommend to the
secretary and the secretary approved, including spinal muscular
atrophy, on the RUSP in a number of states--I think it's up to
19--no, I am sorry, it's up to maybe about six states that are
now screening. Many are also trying to work through the issues
that are needed to implement the screening for it.
Mr. Burgess. Sure. Well, it's a cost issue, and, clearly,
that's one of the areas where we are focused as well. We
delivered CURES for the 21st Century a couple of Congresses ago
but cures don't do any good if they're not available to the
people, and now with breakthroughs like this we've got to
figure out ways to make them available to the people.
Dr. Howard, thank you so much for your testimony today. I
think your emergency nurses network helped me with the Mission
Zero Act that we got added to the Pandemic All-Hazard
Preparedness Act, so thank you for that, and that will be
signed literally at any time. So it----
Ms. Eshoo. I think it was last night. Yes.
Mr. Burgess. Oh, was it last night? OK. So it became law so
good for us. We got a win on the board with that one, and
thanks for your help on that.
As far as just developing the--your partnership grants for
the interfacility transfer guidelines for pediatric patients
but they're not completely universally accepted. Is that
correct?
Dr. Howard. That is correct.
Mr. Burgess. So what's the problem there?
Dr. Howard. Well, the problem is not every site has defined
trauma systems, which is one of the bigger reasons we see
interfacility transport. And so not every state has this same
type of EMS system in place and that is a challenge.
Mr. Burgess. So what--if we reauthorize this bill, are we
going to get closer to achieving that goal?
Dr. Howard. I think that there is consistent work that is
done as part of this reauthorization. One of the other big
pieces is the pediatric readiness work that is being done,
which I didn't talk about, which is really helping every
emergency department be more pediatric ready, which is a key
consideration because many are not.
Mr. Burgess. OK. Thank you, Madam Chair. I will yield back.
Ms. Eshoo. The gentleman yields back.
Dr. Bocchini, let me just ask you very quickly, are you
going to bring up at the committee the issue of autism? The
screening and what might be available?
Dr. Bocchini. Yes, I have--I am no longer a member of the
committee. I have completed my term. But I certainly can
provide that information back to the committee. Thank you.
Ms. Eshoo. That would be wonderful. Thank you.
I now have the pleasure of recognizing the gentlewoman from
California, Ms. Matsui, for her 5 minutes of questions.
Ms. Matsui. Thank you very much, Madam Chair, and I want to
thank the witnesses who are here today. Every one of you spoke
to issues and concerns that affect every single one of us or
our constituents, or our families.
Investment in public health programs and infrastructure is
critical for our nation's health and well-being. The programs
we are discussing today are designed to bolster communities'
ability to cope with health problems and the special needs for
at-risk subgroups and they have proven they can do just that if
we fund and support them.
Autism is a lifelong disorder and for many families, there
can be great uncertainty over how the needs of autistic
children will be met as they age out of school-based services
and grow into adulthood.
I can tell you that in Sacramento, my district, we had
parents come together to really develop an autism--the MIND
Institute--which has been there for over 25 years and does
great work, but it's parents and advocates that really did that
because, you know, they're having access to a comprehensive
range of services and strong systems of support that we all
believe should be guaranteed for people of all disabilities for
their entire lives.
Now, Dr. Hewitt, where do the greatest gaps in
understanding autism still exist and how will this
reauthorization support expanding key activities in areas of
focus for autism research?
Dr. Hewitt. I think one of the largest gaps is
understanding issues related to adults with autism and so CARES
gets us moving in that direction by addressing issues across
the Lifespan. Through LEND training programs, we are expected
to teach and train the next generation of leaders across all
different kinds of health and allied health disciplines about
autism and the life course of a person with autism. The CDC's
surveillance program is expanding in a few of its sites the
surveillance up to 16-year-olds now. So I think CARES gets us,
again, a little bit farther along the Lifespan and I think
that's important.
Ms. Matsui. But you're saying not far enough yet, really?
Dr. Hewitt. There's a lot of room to grow.
Ms. Matsui. Right. Absolutely.
Dr. Hewitt. But it gets us moving in the right direction.
Ms. Matsui. That's good. Now, we know that young people
with autism can face significant mental and behavioral health
challenges and that other autism-related health conditions like
disrupted sleep cycles and painful GI disorders can contribute
to crisis episodes.
Ms. Hewitt, how are providers addressing the special needs
of the autism community? Are there mainstream evidence-based
strategies for preventing and treating a mental health crisis
for people with autism?
Dr. Hewitt. Sure. There is a number of--there's much--a
body of research to help us, guide practitioners. We do that
through our LEND programs, the developmental-behavioral
pediatrician training programs.
That's the purpose is to connect practitioners to evidence-
based practices that then they use in their community work.
Ms. Matsui. OK.
Dr. Hewitt. So it's----
Ms. Matsui. Right.
Dr. Hewitt [continuing]. We need to learn more. But we also
need to get practitioners informed and educated about what we
already do know so that they're using those interventions in
their work.
Ms. Matsui. OK. Dr. Howard, of the innovative research and
training programs supported by the Emergency Medical Services
for Children programs, are autism-tailored services a focus for
improving overall pediatric emergency care? If not, how can we
work to broaden the program's scope?
Dr. Howard. So I am not aware that there are autism-
specific programs but I think that's a really right inclusion.
There are programs for children with special healthcare needs
and so that certainly would fall within that group where we
tailor the treatments that we do differently for these
children.
For example, we don't necessarily immobilize the child with
a special healthcare need----
Ms. Matsui. Right.
Dr. Howard [continuing]. The way we do with a child that
doesn't have a developmental challenge. So, indeed, those are
considerations that are worked with.
Ms. Matsui. OK. Thank you.
Now, when discussing the needs of our nation's older
Americans, we must ensure that policy reflects an inclusive
focus on the need of caregivers and how aging impacts the
entire family.
That's why I am really supportive of this increased funding
for the Lifespan respite care program to really recognizing the
incredible value of our family caregivers and give them greater
access to the support and relief they need and many times,
those are our only caregivers.
Ms. Kagan, how do disparate funding sources inhibit a
state's ability to provide comprehensive and coordinated
respite care programs?
Ms. Kagan. Yes. States, because of their multiple funding
streams and service avenues, it becomes very confusing to
family caregivers to figure out how to access those services to
figure out which programs they might qualify for.
For many caregivers, they don't even recognize what respite
is and that there's a service available to them. So by giving
the state the opportunity to identify all those funding streams
and services in the state and put them in a format that they
can then translate that information for family caregivers
certainly helps them access the system to navigate that maze.
Ms. Matsui. So you're saying better information is
disseminated?
Ms. Kagan. Better information, yes.
Ms. Matsui. OK. Thank you, and I yield back.
Ms. Eshoo. The gentlewoman yields back.
It would be wonderful for doctors' offices to know so they
could advise their--when the caregiver brings their loved one
in, they can say, well, you need a break and here's something
for you. I wish I had that but, you know, I mean, we all know
what this is and if there's someone that doesn't, then it's
what's in store for you.
Mr. Walden. Chairs of subcommittees may need that, too.
Ms. Eshoo. Yes. Exactly. Thank you.
Mr. Walden. And ranking members.
[Laughter.]
Ms. Eshoo. I know.
The Chair is happy to recognize the ranking member of the
full committee, Mr. Walden, for his 5 minutes of questions.
Mr. Walden. Thank you, Madam Chair.
So, Ms. Kagan, I am, as you heard, a strong supporter of
patients receiving the care they need in their homes if at all
possible. Oregon led on this way back with Project
Independence. I think we still have a Medicaid waiver. It's
been very good for families as well as, I think, the taxpayers.
How does respite care help keep a caregiver's loved one at
home and out of a nursing home and how does respite care
ultimately reduce costs to our federal health programs?
Ms. Kagan. Yes, by--it's well documented that respite
directly correlates with reduced stress and feeling the
caregiver burden, and when we reduce the stress in caregiver
burden of the family caregivers, their health is improved as
well.
So they can continue to provide that care at home. Eighty
percent of long-term services and supports are provided at
home, especially for older individuals.
Mr. Walden. Yes.
Ms. Kagan. And so we really need to support the family
caregivers' health and well-being and that of their entire
family so they can support that loved one at home.
Mr. Walden. So it's actually a savings to taxpayers in many
ways?
Ms. Kagan. Yes, absolutely. It can also help reduce use of
emergency rooms.
Mr. Walden. Right.
Ms. Kagan. We are increasingly seeing some family
caregivers take their loved ones to the emergency room just for
a break because they have no other option.
Mr. Walden. Oh, that's not what we want.
Ms. Kagan. So that's a very costly alternative.
Mr. Walden. Yes. That's expensive, the most expensive
portal into the healthcare delivery system right there.
So in your testimony you described the great work of states
in leveraging Lifespan respite care program dollars and these
dollars, we know, are used in a variety of ways.
Can you explain why allowing state grantees to innovate
improves overall respite care services? These would be called
softball questions, by the way. Just so you know.
[Laughter.]
Ms. Kagan. By giving states the flexibility to innovate, we
can continue to explore what works best for family caregivers
and we know for sure that there's no one single respite model
that works for all family caregivers.
Mr. Walden. Sure. Everybody's different.
Ms. Kagan. Even over the course of a month a family
caregiver may desire different forms of respite--in-home, out-
of-home, volunteer companion services to help their loved one
perhaps get out into the community and do something meaningful
for them as well.
So by allowing us to explore these other options we not
only help us figure out where we want to invest public dollars
but it helps us identify where in the informal service sector
what community activities already exist in terms of natural
supports that can----
Mr. Walden. Sure.
Ms. Kagan [continuing]. Help families identify that they
can use for respite.
Mr. Walden. Because often they don't even know probably,
right?
Ms. Kagan. Exactly.
Mr. Walden. This comes on you or your spouse and there you
are, and you have never even thought about it and now you own
it and it's a challenge. It's a challenge, and the other spouse
or whoever the caregiver is can really get worn down and then
they have a problem----
Ms. Kagan. Exactly.
Mr. Walden [continuing]. If you don't give them a little--
--
Ms. Kagan. We are trying to protect the person with the
health or disability having a meaningful healthy life but we
also have to protect their caregiver and their family as well
as support them.
Mr. Walden. That's right. Yes. Yes. I've seen it firsthand.
Dr. Howard, you mentioned that the EMSC program covers both
pre-hospital EMS and emergency departments. Can you expand a
little more on the improvements in the care for pre-hospital
EMS and why those improvements can be critical in saving an
injured child's life?
Dr. Howard. Well, pre-hospital is the first contact
typically an injured child has. That is 911, and one of the
challenges particularly across this country is that not every
EMS system has the same resources. We still have many services
across the United States that are volunteer- based.
Mr. Walden. Sure. My district.
Dr. Howard. And those services don't have the resources for
the education or the specialized equipment needed to care for
children.
And so Kentucky is one of those states that has some
challenges, obviously, and we have taken PEPP, which is the
Pediatric Education for Pre-Hospital Professionals, and the
Emergency Nursing Pediatric Course both to these rural
communities.
Mr. Walden. Good.
Dr. Howard. Actually help with that education and then the
state partnership grants have allowed them to buy the
specialized equipment they need to take care of those children.
And receiving those children in my emergency department I
can tell you they're arriving in better condition.
Mr. Walden. Sure, they are. That makes a lot of sense. And
can--you state in your testimony that pediatric patients are
simply not little adults, as many people might assume, and they
require very specific types of care and certainly specific
equipment unique to children and dosages on medication.
Can you provide some examples of how diseases and injuries
uniquely manifest themselves differently in children?
Dr. Howard. Absolutely. So there's--I will take injuries to
start with. Number one, one of the things that's very
different, if any of you have been in a car crash and you were
pulled--taken out of your car and put on a board or some type
of an immobilization device and you lay flat, children have a
larger head and they can't do that. If you lay them flat on a
board it will compromise their airway. So we have to put a pad
under their shoulders so that their spine is maintained in a
neutral position and their airway, which is very pliable and
thin, unlike ours that's more rigid and cartilaginous, it will
collapse. And so that's a perfect example there.
The other problem is in illnesses children can't tell you,
particularly nonverbal small children, where their hurt is.
They may cry if you touch it but they may not be able to tell
you that they have a sore throat or that their ear drum is
bulging which, you know, untreated ear infections can lead to
meningitis. So there are certainly many challenges that can
occur.
Mr. Walden. Thank you very much, all of you, for the work
you do and for your testimony today, and I yield back.
Ms. Eshoo. The gentleman yields back.
This is what's so wonderful about hearings. We just keep
learning and learning from the experts in our country. We are
so grateful to you.
I now would like to recognize the gentleman from North
Carolina, Mr. Butterfield, for his 5 minutes of questioning.
Mr. Butterfield. Thank you very much, Madam Chair, and
thank you to the four witnesses for your testimony today.
You know, the Chair is absolutely right. Every time we have
a hearing like this we just learn more and more and more, and
we go home and reach out to constituents and make community
visits and we learn even more.
And so we just hear about examples after examples after
examples. In our home districts the opioid has not limited
itself to affecting only adults. We've all heard stories about
student athletes, for example, who might be treated for a
sports-related injury and find themselves caught in the grip of
opioid abuse. Children and adolescents are not immune from the
reach of addiction and substance abuse, which can sometimes
lead to emergency situations where immediate care is needed.
So, Dr. Howard, let me stay with you, if I can. Dr. Howard,
can you tell us about how the EMS has aided in helping
emergency care providers identify adolescents for opioid or
other substance abuse?
Dr. Howard. So PECARN that I mentioned earlier that does
the research has actually looked at some of the programs in
terms of being able to--how adolescents in particular present
differently clinically than adults do with addiction. The
symptoms and the presentation are not the same. So that's a
very specific example of the work that this particular program
has been able to do to make a difference for children and the
opioid crisis.
Mr. Butterfield. And how does this identification improve
follow-up care and treatment after these young people make it
through the emergency?
Dr. Howard. Well, the first step to treatment is
recognizing it and so being able to recognize it in the
emergency department, which is not something even ten years ago
we would have looked for.
So once we recognize it we can make sure they're connected
to care, make sure that warm handoff occurs as is appropriate.
We can't always assume that those that care for them are going
to get them to that next step. So we have to make sure that
those connections are made in the emergency department so that
they can be safe.
Mr. Butterfield. Absolutely. There is no doubt that newborn
screening is a vital preventive public health service that has
led to better health outcomes for thousands, if not millions,
of children.
The Newborn Screening Saves Lives Act has dramatically
improved the capacity for states to expand newborn screening
services and I fully support its reauthorization. I was glad to
see that the reauthorization bill that we are considering
includes--it includes a study on how we can modernize newborn
screening.
As our capabilities for treating and screening for
conditions expand, I think it's important that our
infrastructure also keeps pace.
Dr. Bocchini, let me ask you please, can you explain the
role that public health labs play in the newborn screening
program and how public health lab capacity plays a role in
determining what conditions a state might be able to screen?
Dr. Bocchini. So the newborn screening program is a state-
based public health program and so each state has the
responsibility of putting together the laboratory that performs
the testing that's necessary to screen and then, in many cases,
do the diagnostic test to confirm that an individual has a
specific diagnosis.
The capacity of state labs does vary from state to state
and when we bring new conditions into the RUSP it does create
the requirement that a state lab may have to modify its
program. It may have to bring in new personnel. It may have to
bring in new equipment. But, in addition, the state program not
only has the lab requirement but it also has to develop the
ability to not only identify the patients but get them to
appropriate therapy for short-term follow-up and long-term
follow-up.
So there is a variation in the capacity of individual
states to provide the infrastructure that's needed. And so the
grants that can come from HRSA and the efforts from the CDC can
help individual state labs meet the requirements that are
necessary for them to bring on a new condition.
Mr. Butterfield. That speaks to my next statement. In
addition to lab capacity that we are talking about, we also
want to make sure that a diagnosed child is able to receive
adequate treatment and, as you know and I know, under the law
HRSA is required to provide assistance to states on follow-up
care once a newborn is diagnosed, right or wrong.
Dr. Bocchini. That is correct--both short-term and long-
term follow-up. So we want to make sure that the child gets
into the appropriate subspecialist if necessary and initiates
the appropriate therapy but then maintains that so that we can
look at what happens long term in terms of the effectiveness of
the therapy and the ability to maintain that child in a
program.
Mr. Butterfield. Thank you, Madam Chair. I yield back.
Ms. Eshoo. The gentleman yields back. The Chair now
recognizes the gentleman from Illinois, Mr. Shimkus, for his 5
minutes of questioning.
Mr. Shimkus. Thank you, Madam Chairman, and welcome to you
all. We are glad to have you here and I am going to follow up
first with--I know Dr. Burgess touched on this issue with Dr.
Bocchini but I want to turn to Dr. Hewitt on this same issue.
You know, I've worked on this gnomic sequencing as a
diagnostic tool for a couple years now and you noted that the
prevalence of autism spectrum disorder diagnosis has risen
dramatically over 600 percent in the past several decades. But
it seems like we still lack a certain degree of precision when
it comes to diagnosing autism spectrum disorder.
I realize that there are different schools of thought on
the applicability of genetic diagnosis. But I am curious of
your thoughts on the role this technology can play in two
areas, first on the diagnostic end and secondly on the
therapeutic side.
Dr. Hewitt. Certainly. That's a really good question and I
would defer the answer to my colleagues who are doing that kind
of research. I am not that--I am not a geneticist and I am not
doing genetic research. So I would be happy to get you expert
information about that at a later time.
Mr. Shimkus. OK. Great.
I am going to turn to Dr. Bocchini. You also mentioned
genomic diagnostics has having the potential to significantly
alter a newborn screening. So I would like to hear more on your
thoughts on the role this technology can play.
A lot of us on this committee, based upon the 21st Century
CURES--you know, this little rascal--his name is Max and he
was, like, the number- one lobbyist for 21st Century CURES.
This is at the bill signing at the White House with Joel
Pitts behind--Max is putting bunny ears behind my head and I am
putting them behind his. His issue was a blood disorder that
had they not delayed a tonsillectomy he could have bled to
death, which was an undiagnosed bleeding disorder that could
have been disastrous, as I had mentioned.
But as Max and millions of other children have told us, we
shouldn't rely on luck or, quote, unquote, this diagnostic
odyssey to ensure the best medical outcomes are achieved.
I would like, Dr. Kennedy, if you could expand. In your
prepared statement in the end you say in addition to scientific
advances the ability to utilize new technology such as genomic
sequencing are evaluated additional research, ethical and
clinical questions will need to be answered, and that's part of
our internal debate of how we address this. These technical
advances could significantly alter the approach to newborn
screening in the coming years, and then you end.
So I would like for you to elaborate on that, as I think
it's really timely and the things that we--I am trying to do in
the public policy arena.
Dr. Bocchini. Well, thank you for that question. I think
it's a very important one. Genomic sequencing can certainly
identify a number of genetic changes that could be very
specifically associated with underlying disorders and actually
that's been recognized through the Hunter Kelly research
program at NIH. There are three--and we don't know how it will
ultimately affect newborn screening but we are in the process
of determining how it might affect it.
The NIH, through the program, has three research projects
underway now looking at, comparing the genomic screening, exome
screening, to root current screening for infants in general
population and in the population of infants in a NICU with
critical illnesses.
Those studies will inform us on the potential benefit of
moving towards genomic sequencing as part of newborn screening.
Mr. Shimkus. Thank you very much, and I am just going to
end on here's a perfect example of kids being involved. I
visited a school called--it's pronounced--it's spelled
Hoopeston but it's really pronounced Huptsten--and I had--after
the event I had three high schoolers--Annalynne Schaumburg,
Raven Rutherford, and Seth Mershon hand me a letter asking me
to support this bill.
So that was true youth in action and I appreciate that and
I want to give them credit because I then came back, looked at
the bill, and got on it.
So with that, thank you for time, Madam Chairman, I yield
back my nine seconds.
Ms. Eshoo. I will use part of that to say thank God for the
advocates, right?
I now have the pleasure of recognizing the gentlewoman from
Florida, Ms. Castor, for her 5 minutes of questioning.
Ms. Castor. Well, thank you, Chair Eshoo, for holding this
hearing on this important package of bills and thank you to our
experts for sharing your expertise with us.
I am pleased that we are taking up these bills and I am
proud to be a co-sponsor of the Autism CARES Act and the
Newborn Screening Saves Lives Reauthorization Act.
And I want to thank the Chair again for including my bill
in this hearing, H.R. 776, the Emergency Medical Services for
Children Program Reauthorization, which I introduced with
Representatives Peter King, Representative Butterfield,
Representative Chris Stewart.
Our bill will reauthorize the Emergency Medical Services
for Children through 2024, and EMSC is vital because it is the
only federal funding specifically focused on addressing the
unique needs of children in the emergency services systems.
As Dr. Kunz Howard has stated very clearly, kids have
specific healthcare needs and EMSC helps bring innovation in
pediatric emergency care to each state.
In 2016, 22 percent--that's about two million--of emergency
department visits in my home state of Florida were made by
children. So we must reauthorize this initiative as soon as
possible to ensure America's kids are getting the right care
when they need it.
Florida is using its funds through the state partnership
grant to work on a collaborative project with--it's called the
Florida Pediatric Preparedness and Readiness program--
PEDReady--for hospitals and the EMS. They're working with
national and state groups including the National and Florida
Emergency Nurses Association and the Florida College of
Emergency Physicians.
Florida PEDReady is a quality improvement initiative with
the goal of improving the readiness of medical facilities to
care for children across the state with the focus on non-
children's hospitals and the EMS agencies.
They did a needs assessment in 2018, so last year, and here
are some of the findings from the survey. Pediatric equipment--
most significant challenges include keeping the correct
equipment or size stocked and knowing the most current
pediatric equipment available on the market.
Medication--the most challenging pediatric medications are
the vasopresser drips and emergency airway medications, and I
believe you have mentioned those as well.
Top educational needs are emergencies, pediatric trauma,
and burns.
Dr. Kunz Howard, you also talked a little bit about the
importance of pre-hospital care. You have seen first hand how
important ESMC or EMSC has been to providing better, more
accurate care to our nation's kids.
Reiterate why it's important to have a kind of stand-alone
funding that's specifically targeted back to our home
communities to make sure that we are modern and kids stay well.
Dr. Howard. It's really critical that it be targeted back
to the home communities because that is where the children are.
We need children to receive the care no matter what location
they are in across the United States.
We need to know that every area is going to be pediatric
ready and that is really what EMSC is about is ensuring
pediatric readiness.
And so it is critical that everyone everywhere across this
country knows that if their child is ill or injured they don't
have to think oh, gosh, I've got to get to the next county so
that my child gets the care that they need.
That's not what they need to worry about. They need to
worry about supporting their child and being there for them.
Ms. Castor. What are your hopes for this initiative, going
forward, now that we've had a number of years of continuity and
with this reauthorization local communities will be able to
plan more?
Dr. Howard. Honestly, my hopes is that every emergency
department will be pediatric ready because they are not. I
mean, the survey showed us that not every emergency department
is pediatric ready.
And so we worry about pre-hospital because their care is
critical because if their job is not done right our job is much
harder.
But we need that to be across that continuum of emergency
care both pre-hospital readiness as well as emergency
department readiness.
Ms. Castor. Thank you very much, and I yield back.
Ms. Eshoo. The gentlewoman yields back.
Please to recognize the gentleman from Kentucky, Mr.
Guthrie, for his 5 minutes of questions.
Mr. Guthrie. Thank you very much, and thank you for all
being here, particularly Dr. Howard. Thanks for coming up from
the Commonwealth today to be with us and always enjoy having
you in Washington, D.C., and bringing to attention the areas in
which you focus on and it's always so important, particularly
on the Emergency Medical Services for Children program.
I know that you're the educator for the--our Lexington
division of fire and emergency services. I am close with our
EMS folks down in Bowling Green Gary Madison. I know you know
those guys down there that work hard.
Would you just explain how this program support courses
that have saved children's lives and maybe some examples of how
this program and your education of these great men and women in
our emergency services have saved lives because of what you
have done?
Dr. Howard. Well, you know, I've been very fortunate to be
able to go across Kentucky because of the EMSC program and
teach paramedics specifically as well as nurses and physicians
what is appropriate for pediatric emergency care.
So we have been to Pikeville and we have been to Paducah.
So we've been, you know, from one end of the state to the other
to actually make sure that PEP is available because the
Pediatric Education for Pre-Hospital Professionals is really a
phenomenal course and one of the nicest things about that
course is that it was developed collaboratively. The American
Academy of Pediatrics, the Emergency Nurses Association, the
American College of Emergency Physicians, and then some of the
EMS agencies we all work together so that we would all talk the
same language, because that is one of the challenges in care is
the physicians will learn one thing, the nurses learn another,
and the pre-hospital professionals learn something different.
But we all use something called the Pediatric Triangle to do
that initial assessment of the child to make that common
language so that we all have the same starting place so we all
recognize the same framework for how sick that child is. And so
I think that's one of the best examples of the work that's been
done as part of the EMSC is making sure we are all talking the
same language about the ill or injured child.
Mr. Guthrie. All right. Thank you very much.
Dr. Bocchini, I got involved in early childhood or newborn
screening when I was in the state legislature for hearing. We
learned--Governor Patton, who was our governor at the time,
championed that if a child just has hearing issues and you're
able to find it at five years old and fix the issue or give
them ability to hear better, they're going to lose things they
can never recover like pronouncing certain words and things
like that.
So we thought it was important to do that at early
childhood--I mean, at newborn. And we all had groups that come
here and talk about the issues and they're all important and
they're all valuable and why we don't test for everything.
You know, one is the cost, as it moves forward. So could
you kind of say for us--I know that six new conditions have
been added for the recommended.
So when groups are pulling us, what should we be looking
for? How this is something that we need to be screening for a
child? How does that--as conditions change, as medicine changes
so quickly, how do we know how to change this screening in a
timely manner?
Ms. Eshoo. Your microphone.
Mr. Guthrie. Get the microphone, yes.
Dr. Bocchini. I am sorry. I turned it off.
The Advisory Committee has developed a very specific
approach to bring conditions for evaluation. It starts off with
working with advocacy groups, researchers, organizations that
have a particular condition which they're interested in or have
the development through research of a potential screening test
or a therapy, and try to work with them to put together a
nomination packet of information that would meet the standards
for which the committee would review that condition for
consideration of being placed on the RUSP.
Then the most important thing the committee does is when
accepting that nomination for a condition, there is an
independent evidence review committee that does a formal
evaluation of all the evidence related to the condition and the
benefits of treatment.
And so the goal of the committee is to look for a condition
that we have a degree of certainty if it's added to the RUSP
will provide a net benefit for the patient or for the child
that is affected.
So we have a very formal way to bring people together and
evaluate the condition and then, based on the evidence review,
make a decision about whether the condition should be added to
the RUSP. We make that recommendation to the secretary. The
secretary of HHS has the final decision for acceptance of our
recommendation.
Once the secretary accepts it, it becomes part of the RUSP.
So it's a very significant evidence-based process that leads us
to bring conditions forward.
We also are paying attention to where changes are being
made, where breakthrough therapy might become available so that
we can kind of look forward to bringing conditions on.
Mr. Guthrie. Thank you very much. My time has expired. I
yield back. Thank you for your answers. I appreciate it.
Ms. Eshoo. The gentleman yields back.
The gentleman from Maryland, Mr. Sarbanes, is recognized
for 5 minutes for his questions.
Mr. Sarbanes. Thank you, Madam Chair. Thank you, all of
you, for your testimony today on these very, very important
public health programs and the need for us to maintain them.
I wanted to talk, Ms. Kagan, to you about the respite care
issue; and I wondered if you could maybe pull us back a little
bit and try to give us a sense of how the supply of these
critical support services is meeting demand.
I know when I came in earlier you were, I think, talking
with Congressman Eshoo a little bit about that and give us a
sense, and I know it's hard to quantify this but try to
describe what the gap is between the need for this and the
demand--rather, the need for this and the supply for it.
I am also curious, in the same vein, if we looked five
years ago and then ten years ago, just picking that time frame
if that works, how much progress we've made in meeting the
demand for these services. So if you could speak to that, then
I have a couple follow-up questions.
Ms. Kagan. Yes, absolutely.
I did include in my testimony and we don't have really
great data on who needs respite and who's getting it. But there
was the survey done by AARP and the National Alliance for
Caregiving several years ago that demonstrated 85 percent of
family caregivers of adults are not accessing respite and we
know all of the reasons why: shortage of services, no ability
to pay for services. But even when families have the dollars to
pay for respite they cannot find the providers.
One great example of how this is being dealt with in
Lifespan respite is in Maryland. They received a one-time grant
in 2015 and they jumped right in to providing emergency respite
services, which were--they identified to be in critically short
supply in the state.
But rather than just given families the voucher dollars to
pay for emergency respite, because that doesn't do a family
much good if they can't find a provider on short notice, so
they also contracted statewide with a home health agency that
would be available to provide those respite providers on less
than 24 hours notice.
So we have to not only build up the system so that we can
support family caregivers to pay for dollars, but address the
provider shortage as well.
And it's not just individual providers. We need community
and faith-based programs to step up as well--things I think you
have asked over the last five to ten years.
In some ways it's gotten a little bit worse and then that's
also because of the changing demographics. From my
understanding of some of the AARP data, especially for older
adults over age 85, currently there are seven people in the age
range that can provide care to those over 85. In ten years or
less, the ratio is going to be more like two to one. So to
actually even have the physical bodies to provide this care,
and it's not just in the respite field, of course. It's the
direct service workforce across the board.
So we are facing bigger challenges but we are moving
forward in terms of recruiting and training new providers.
States like North Carolina have partnered with Money
Follows the Person programs or other programs to work on
statewide direct service workforce issues.
So our programs are working in conjunction with those who
are trying to deal with the crisis and provide----
Mr. Sarbanes. So that kind of leads me to another question,
which is, obviously, the flexibility of the grants that go to
the states are allowing for a lot of different approaches to be
tested.
Are there some best practices emerging? Some approaches
that are the ones we should maybe be providing more support for
as we go forward? Are we still really kind of in an
experimental stage and there's a lot of different things being
considered, all of which show promise or a substantial number
of which show promise?
Or if you were kind of betting on what would emerge as the
approach that's got the most promise, going forward, what would
you say to that?
Ms. Kagan. Again, that's a little bit of a difficult
question because the respite needs of families are as varied as
the models that should be out there for delivering it.
I think one successful model that most states have been
using is use of the consumer-directed voucher that allows
families to choose who they want for their provider, when they
will hire them, how they will train them.
There's been some research that shows family caregivers are
most satisfied with that approach if they have control over who
they're hiring, when they're hiring, and how they use the
respite services.
On the other hand, there are a lot of wonderful models that
are helping us expand capacity through faith-based communities.
In Rhode Island, they have developed a student respite
initiative, which uses nursing students to provide respite
services and in return for that they're getting course credit
in clinical experience, and that's been so successful. In Rhode
Island they've expanded this past year to two additional
nursing programs, and there are several other states that are
using these students to build respite services as well.
Mr. Sarbanes. Right.
Ms. Kagan. So that, along with volunteer respite
opportunities. New York has trained over 100 companion respite
volunteers that are serving families in 26 counties across the
state.
So there are a lot of wonderful models. Some of these
efforts right now are because the funding is so small the
efforts are very tiny. But it's giving us a chance to see what
families prefer and what they're willing to use as well.
Mr. Sarbanes. Very helpful. Thank you. I yield back.
Ms. Eshoo. The gentleman yields back.
We went about a minute over but I wanted to hear every word
you said so I didn't want to tap the gavel.
Now, you know, our subcommittee is blessed with having
physicians as members of it. But we also have the only
pharmacist in the--in the Congress that's part of our
committee. He's the gentleman from Georgia, Mr. Carter,
recognized for 5 minutes for his questioning.
Mr. Carter. Thank you, Madam Chair, and thank all of you
for being here. Certainly, these are important pieces of
legislation that we need to take care of and we appreciate your
help in helping us move them forward.
Dr. Hewitt, I want to start with you. I want to just say
that I am very proud of the Children's Hospital of Atlanta's
Marcus Center for Autism. I don't know if you have ever had the
opportunity to visit. I have, and it's certainly, I think, just
world class. I was so impressed. It has treated more than
40,000 children since it was opened, and it's one of the
largest autism centers in the U.S., and we are just blessed to
have it in Georgia and blessed to have the Marcus family as
beneficiaries and helping us with that. They've done great
things in the state of Georgia.
But the Marcus Center is one of five Centers of Excellence
in the country. What constitutes--what makes it a Center of
Excellence and what's the difference there?
Dr. Hewitt. Well, a big part of it is where the funding
comes from. The Autism Centers of--and then the action that
happens in those centers. So the Autism Centers of Excellence
are known for research and that research varies. Some of it is
very clinically oriented. Some of it is what we would call more
bench science kinds of research. But the Center of Excellence
concept is that you're doing important research that leads to
changes in practice and policy.
Mr. Carter. One of the things that I was impressed most
with was their emphasis on early intervention. How important is
that and what difference does that make?
Dr. Hewitt. The science is very clear that early
intervention matters and children will have better educational
outcomes. They'll have better lifetime outcomes the earlier in
which they are--receive a diagnosis and get intervention.
And so that's why there is such an important focus in many
of the Autism CARES programs around early intervention and
treatment.
Mr. Carter. I remember when I was there they showed me this
new diagnosis, if you will, where they were measuring early
detection devices that measured eye movements and that was to
help screen for autism.
Are you familiar with that?
Dr. Hewitt. I am vaguely familiar with that.
Mr. Carter. OK. What--just out of curiosity, what are some
of the biggest breakthroughs that we've seen in autism? You
know, it's such a problem and it's so difficult, I should say,
to really break through. What are some of the big breakthroughs
that we've seen?
Dr. Hewitt. I think one of the important things is just to
remember that autism is complex and autism is unique for each
individual.
An emerging breakthrough is really around what we are
learning from brain imaging and being able to identify autism
in very, very young children.
So and that, again, is an outcome of the research that
CARES and other programs are investing in?
Mr. Carter. So, obviously, research is extremely important
in this and the funds that come from Autism CARES are extremely
important in the research part of it?
Dr. Hewitt. They're extremely important. I think expansion
into adult-related interventions is an important next horizon.
Mr. Carter. Good.
Well, again, I just wanted to be able to tell and to speak
about the Marcus Center because we are so proud of it in the
state of Georgia and just the work that is being done there, as
I say, I've witnessed it first hand and I've seen it and it's
phenomenal.
We are very, very happy and very proud to have it in the
state of Georgia.
Again, I thank all of you for being here. This is extremely
important and I will yield back the remaining time.
Ms. Eshoo. The gentleman yields back.
I now would like to recognize the gentlewoman from New
Hampshire, Ms. Kuster, for her 5 minutes of questioning.
Ms. Kuster. Thank you, Chairwoman Eshoo, for holding this
important hearing and for giving us the opportunity to discuss
legislation critical to funding programs supporting newborns,
children with autism spectrum disorder, and other intellectual
disabilities, and family caregivers.
And just as an aside; I was a family caregiver with my
father for my late mother, who had Alzheimer's disease, and we
were very grateful for the respite care. Eventually, he just
ran himself right into the ground. And I can remember friends
coming up on the street saying, ``is your father okay?, and I
said, ``no, he's not okay at all.'' He ended up needing hip
surgery and he was just exhausted. But he didn't want to see a
53-year marriage--let it go and when I finally--he had to go to
the hospital for the hip surgery; and we were going over her
care during--in respite and he said, ``wow, I am going to have
a hard time taking care of her when I get home from surgery,''
and I said, ``yes, I think that'll be impossible.'' So that was
when we finally got him to get her into a nursing home care,
and my heart is with all of the families that are working on
this.
In my home state of New York, the Leadership Education
Neurodevelopmental Disorders Program at Dartmouth-Hitchcock
Medical Center provides Granite Staters with workforce training
and family-centered services for patients with autism spectrum
disorder and this funding is critical, as you can imagine, in a
rural community to ensure patients' and families' access to
support.
What we've heard today is a snapshot of how these different
programs truly saved lives and I want to thank everyone on the
committee for bipartisan legislation that's noteworthy and
important.
With that, I want to jump into the questions. Dr. Hewitt,
you described a vast array of funding through CARES and we have
many of those same programs.
Autism is in the name but the training and research touches
people across the disability spectrum, and I think it's
important for us to understand how comprehensive the CARES
program is.
Could you elaborate on how CARES serves families--patients
with autism and intellectual abilities and the full spectrum?
Dr. Hewitt. Sure. The training programs that are funded
through CARES--the LEND training programs, the developmental
behavioral pediatrician programs--they're really targeted to
focus on the range of neurodevelopmental disabilities.
So autism is a part of that but they expand into many other
categorical groups of disabilities--cerebral palsy,
hydrocephalus, spina bifida, Tourette's Syndrome. I could go on
and on and on.
And so in our training programs, we are not charged with
just developing leaders who are going to change services and
practices and policy related specifically to autism. It's an
important focus of our programs. But autism is one of many
neurodevelopmental disabilities on which our training programs
focus.
Ms. Kuster. So and key changes in the bill that we are
discussing today address the needs of adults in geographically
underrepresented areas. How does CARES funding support the
workforce so that there are enough properly trained providers
to address the needs of this community?
Dr. Hewitt. I think that's a really important step in the
reauthorization. Specifically in the developmental behavioral
pediatrics program there is a requirement that those training
programs reach developmental behavioral pediatricians in rural
communities.
In our LEND programs we are expected to reach our entire
state. So, for example, our program is in metropolitan area--a
large metropolitan area--but we are expected to be able to have
a statewide reach throughout our entire state.
Ms. Kuster. And can you speak to what might happen if
continued federal support was not available?
Dr. Hewitt. I think a theme across all four of the people
here to testify today has been workforce and in all of our
areas of specialty we have workforce shortages and without
reauthorization the specific training programs that help to
evolve the expertise in nurses and occupational therapists,
social workers, geneticists, on and on, it's just not there.
People don't get that training in their specific discipline,
let alone an interdisciplinary perspective around these
critical issues.
So I think one of the biggest drawbacks will be the lack of
professional training that is targeted and specific on specific
disability groups, specific genetic disorders, et cetera.
Ms. Kuster. Well, my time is up. But I can certainly say in
a state with 2.4 percent unemployment, this federal funding
will be critical. So thank you. I yield back.
Ms. Eshoo. The gentlewoman yields back.
The Chair recognizes the gentleman from Oklahoma, Mr.
Mullin.
Mr. Mullin. Thank you, Madam Chair.
Dr. Bocchini, I got just a couple questions for you. What
is the process for adding a new test to the newborn screening?
Dr. Bocchini. So the test that--so a screening test would
need to have the laboratory performance characteristics that
would enable it to identify the majority of patients who have a
disorder and not have a number of false positive tests that
would create a need for evaluating a number of patients who do
not have the disorder.
So that would mean that we need to know whether a screening
test would perform adequately within a rapid high-performance
newborn screening laboratory.
Mr. Mullin. How long does that total time frame take?
Dr. Bocchini. Well, it takes pilot studies and one of the
things that this committee--our advisory committee needs is
adequate number of pilot studies.
Depending on the size of the pilot studies, it may take a
year or more--multiple years--to prove that a test performs
adequately to identify the patients that we need to so that
there is not excess cost, excess number of false positives.
That would potentially create harm for the patient.
Mr. Mullin. What's the percentages that are acceptable? I
mean, do you--when you say not--is it a five percent failure
rate? Three percent? One percent?
Dr. Bocchini. Well, probably it varies from test to test.
But the goal would be to have that down to as few as possible.
So it would be probably much less than three percent.
Mr. Mullin. Much less than three. You mention in your
testimony that six additional conditions were recommended for
inclusion on the recommended uniform screening panel. Do we
normally see savings in the Medicaid or CHIP system when we add
tests?
Dr. Bocchini. Yes. Those--one of the advantages of having a
public health system is that there would be no health
disparities related to the ability to get tested and then there
is really an important requirement that the treatment that is
necessary for us to even consider a condition is available to
everyone.
So that would include CHIP or Medicaid.
Mr. Mullin. Some of the studies that we've seen is that the
providers or primary care physicians they're not real familiar
or real comfortable with recommending these tests or what to do
with them when they have certain tests screened and where to
send the individuals.
Are we looking at trying to educate the primary care
person? How are we trying to educate, especially the
individuals that are maybe been in the field for a while versus
ones that are entering the field?
Dr. Bocchini. Yes, that's a really good question because as
things evolve primary care practitioners need to be much more
aware of and how to deal with the genetic-related conditions
that are being found in the newborn period.
So the advisory committee does have a education and
training work group that addresses the education of everyone
involved in newborn screening. That would be providers, the
public, as well as the laboratorians that might need
information.
So there is a significant effort to train or educate
individuals. The American College of Medical Genetics has a
series of statements that are available to state newborn
screening programs that could be given to providers when a
diagnosis--when the screening test is abnormal so that they
could then have the information they need to advise parents of
the next steps.
Mr. Mullin. Is there an effort to include this training in
some of their continued education that's required each year?
Dr. Bocchini. Yes. In fact, there are quality improvement
projects, one from the American Academy of Pediatrics that is
available to all primary care pediatricians as well as other
programs as well in individual states.
Mr. Mullin. Thank you. Thank you for your time. I yield
back. Thank you.
Ms. Eshoo. The gentleman yields back. The Chair recognizes
the gentlewoman from Illinois, Ms. Kelly, for her 5 minutes of
questions.
Ms. Kelly. Thank you, Madam Chair, and thank you to all the
witnesses.
Back to Hewitt, I just wanted to ask you, because something
personal just happened in my life. My godson who is, like, a
year and maybe three or four months his mom was just told that
they think he has autism and I wondered, you know, what signs
did he show that made them think that, because he seems like a
healthy lively baby boy.
Dr. Hewitt. Sure. So one of the things about autism that's
important for all of the subcommittee members to recognize is
there isn't a blood test you can take. There isn't a genetic
screening you can use right now to identify autism.
And so clinical staff, teachers, therapists are looking--
they're observing for characteristics, and some of those common
characteristics are related to communicate skills, social
skills, behavioral interactions.
And so likely somebody saw some of those common
characteristics related to communication, socialization, that
were of concern.
Ms. Kelly. It's interesting we are having this hearing now
because his mother is actually getting him tested today. So I
was just curious.
Dr. Hewitt. And his mother is fortunate to be--for him to
be the age he is and to be getting into a test--a diagnostic
test so soon.
Ms. Kelly. And she's very----
Dr. Hewitt. That's really positive.
Ms. Kelly. So I know he'll be well taken care of. But thank
you for your testimony.
Dr. Howard, can you illustrate for us what the scope of
services would look like should Congress not act to protect the
EMSC program?
Dr. Howard. It would be devastating. It would be very bad
for many communities across the country. It would be
challenging to smaller rural emergency departments that don't
have a lot of resources. Where the resources are honestly
needed the most is in the places where they have the fewest
resources to start with.
It would mean that children would not arrive at referral
facilities in quite as good of a condition as they're arriving
in presently, and so it will compromise their outcomes.
And so it would be very devastating for the health and
well-being of children across this country.
Ms. Kelly. And then even though we are here for the
children--not only the children but the providers and the
researchers.
Dr. Howard. Absolutely. The providers and all of the
clinical care providers from pre-hospital, you know, through
physicians, even, honestly, beyond the continuum of emergency
care it even extends throughout that entire visit. It would be
much more challenging for all and there would be a loss of
training for those in the pre-hospital and emergency world,
yes.
Ms. Kelly. You know, this is my first Congress on this
committee. This committee has a long history of focussing on
improving treatment and care for mental health including
improving care for children.
And in your testimony you mentioned that the Pediatric
Emergency Care Applied Research Network funded by the Emergency
Medical Services for Children's program has improved mental
health screening of children in emergency situations. Can you
discuss how this mental health screening tool was developed and
how it has helped care for children?
Dr. Howard. So, I don't know that I can talk about the
specific tool. But what I can tell you is that we screen
children in emergency departments now for behavioral health
conditions which is not something that we always did because
there's been some heightened awareness, part of it being
through the EMSC program.
So we are much more cognizant of mental health screening
for all ages of children. You know, for many years we didn't
assess children for suicidality until they were 12 and now we
assess at five years of age, and that can be complicated to
talk to children and parents about do they have--have they
expressed any desire to harm themselves or are they doing self-
harm behaviors.
And so that's really important, and not everybody knows to
do that without programs like EMSC.
Ms. Kelly. And there's still, even though we are in 2019,
such a stigma still around mental health?
Dr. Howard. Unfortunately, yes, there is still a stigma.
But the reality is that is an illness like every other illness
we take care of. There should be no stigma. We don't stigmatize
children for having pediatric cancer. We shouldn't stigmatize
them for having pediatric mental health disorders.
Ms. Kelly. Right. I have a Master's in counselling. I
totally agree with you.
I yield back the balance of my time.
Ms. Eshoo. The gentlewoman yields back.
And it's a pleasure for the Chair to recognize the
gentlewoman from Indiana, Mrs. Brooks, for her 5 minutes of
questions.
Mrs. Brooks. Thank you, ma'am--Chairwoman--and thank you
all so very, very much for your expertise, for your passion,
for your patience, and for everyone that you're working with
from the young to the older citizens among us.
Dr. Howard, I would like to ask you a couple questions
about the interfacility transfer guidelines that, obviously,
allow for the optimal selection of a hospital that can care for
pediatric and transport of pediatric patients.
But yet, you have shared that only 50 percent of the
hospitals in your written testimony have taken up these
guidelines.
Can you talk with us? What are the barriers that might
exist as to why more hospitals don't utilize the guidelines.
And why might--why aren't they appropriate for all
hospitals?
Dr. Howard. Well, they actually are appropriate for all
hospitals. You know, the main referral centers aren't really
going to transfer children out, obviously.
These are going to be the places that are going to refer
into us--into large academic centers that have all the
resources available, and really one of the barriers still is
knowledge, training, and education.
For as much as we have made great inroads in actually
providing this information to places across the country, there
still remain gaps in this knowledge and there are still some
challenges.
Mrs. Brooks. Excuse me. Can I ask a question about that?
Gaps in the knowledge--whose knowledge? Is it the
physicians in other hospitals and nurses in other hospitals not
knowing when to transfer a child? In Indiana, it might be the
Riley Children's Hospital where I believe Dr. Hewitt trained.
I mean, why--how do physicians and/or nurses in a state not
have that knowledge as to where a pediatric patient should be
most appropriately treated?
Dr. Howard. Well, the reality is not every emergency
physician is emergency medicine trained. Many facilities around
the country, particularly smaller areas, have what we call
locum tenens, emergency physicians, and so they may not be
aware of the care network because they're there for a short
time.
And so having those standardized programs and guidelines
already set and in place by the facility is critical because if
that standard work is there it makes a difference for when you
have the revolving door because many of these small rural
communities it's hard to get people to want to stay there and
practice.
Mrs. Brooks. And so when you refer to the arrangement these
are without out-of-state physicians often coming in for periods
of time and working in ERs. Is that correct?
Dr. Howard. That's--it's very common, particularly in----
Mrs. Brooks. In rural----
Dr. Howard [continuing]. Small rural areas. I mean, that
certainly happens in southeastern Kentucky. We have many locum
tenens emergency physicians that are not vested in the
community. They don't understand the networks. They don't have
the relationships with referral centers and they're just, like,
well, send them to the next place.
Well, sending to the next place isn't really where they
need to go because the next place might have more resources but
they don't have all the resources.
Mrs. Brooks. OK. Do you have any suggestions over what we
can do improve the state partnership grants?
Dr. Howard. Well, I mean, my first recommendation would be
that they, of course, could use more money. But I will just be
happy if they reauthorize where they are today, because we all
believe all of our passions could use more money to be able to
allow for more training in education.
Mrs. Brooks. Thank you.
Ms. Eshoo. Yes. Ask for more, don't say keep it the same.
Mrs. Brooks. Dr. Hewitt, speaking of Riley Hospital and I
want to talk a little bit about how do families find out about
the LEND programs that you have been talking about? How does a
family learn about it?
Dr. Hewitt. So LEND programs across our nation and in our
territories have as a responsibility to have families as
faculty. It's a unique component.
So as our training faculty we have family members and we
have people with lived experience of disability, and we are
partnering with family networks. So that could be Family
Voices. It could be the ARC. It could be the parent-to- parent
training centers in each and every state, and our Title V
program.
So we are well networked in our partnerships to be able to
reach through organizations that reach families, and then
family to family by having faculty and trainees who are family
members in our programs.
Mrs. Brooks. You referred to your brother-in-law. What do
the services look like for adults with autism spectrum disorder
versus children?
Dr. Hewitt. It's a challenge. It varies by state--another
theme that you have heard from us today.
Many states in their developmental disabilities systems
have related conditions clauses which allows for somebody who
has autism to be served in their developmental disability
program.
Not all states have those clauses. So sometimes youth and
adults with autism, once they're out of school, don't have
access to developmental disabilities services.
Mrs. Brooks. Any idea how many states don't have that
clause?
Dr. Hewitt. I do know that data. I don't have it at the top
of my head. But I will send it to you.
When there's a related conditions clause, most people with
autism who are adults are served through the developmental
disabilities system.
The challenge there is the primary program is home and
community-based services, and as you may know there are waiting
lists in most states for those services.
That's the primary mechanism. Some services through a
vocational rehabilitation for employment.
Mrs. Brooks. Thank you. I've exceeded my time. I am sorry,
and I yield back.
Ms. Eshoo. The gentlewoman yields back.
The Chair now recognizes the gentlewoman from Delaware, Ms.
Blunt Rochester, for 5 minutes of her questions.
Ms. Blunt Rochester. Thank you, Madam Chair.
I first want to thank all of the panellists.
You know, whenever issues come before us, I think it's
important to put faces to those issues. And so as I thought
about this opportunity to make sure that we highlight and
support these important bills, I thought about faces in my
life.
When you talk about Lifespan respite care, my mother's best
friend for over 40 years is a caregiver to her daughter. When
you talk about family navigation, I think about so many
families that are challenged with trying to navigate sometimes
very complex systems at a very stressful time in their lives.
When you talk about the LEND program, I think about the
fact that my last job before coming to Congress I worked for
the Institute for Community Inclusion at U. Mass Boston, which
is also a USED, and just the hard work and the fact that people
are trying to do things on a evidence based level, intra
disciplinary and also focussing on parents and advocacy.
And so I just want everybody to take a minute to think
about a face of a younger person of an older person that is
touched by this very important legislation.
And so I thank you, Madam Chair, for the opportunity.
Autism CARES has served as a catalyst for bringing people
together in Delaware--critical stakeholders like service
providers, families, clinicians, and students do discuss what's
working, what's not working, and where we can go in the future.
One of the core pieces of autism CARES is support for early
screening and identification of autism spectrum disorder which
is also an important area of focus for my state of Delaware.
In 2013, we reported that the average age of diagnoses was
5.5 years old. But the American Academy of Pediatrics
recommends screenings start as early as 18 months of age, and
even more troubling are the existing disparities in access to
diagnostic and early intervention services for ASD.
Because of a grant that funded autism CARES, stakeholders
came together to focus on and target Latino families in Sussex
County who are living in medically underserved areas with
limited access to providers and appropriate services.
Dr. Hewitt, my first question is can you talk a little bit
about the disparities that exist among the early diagnosis and
screening for minority populations, why they exist and what
kind of impact it would have?
Dr. Hewitt. Certainly. It's really an interesting topic
because in some communities and in some states, children from
diverse ethnic, racial linguistic backgrounds are under
diagnosed. So a lot of times people make an assumption that the
disparity is that children are over diagnosed. But in our
state, you know, we are under diagnosing Latino children and
Native American children as well as African-American children.
So part of it is that access to early identification,
access to early intervention, those kinds of young child
programs, one of our charges as LEND programs is to address
those disparities.
So, for example, in our last cohort of LEND trainees one of
our trainees' project was to be working in the mosques and
trying it train the mosque families about autism.
So trying to get into faith communities to help in
identifying and getting information about how kids should be
identified and it shouldn't be a stigma to have autism. It
should be considered like any other health issue where we
identify it and get supports.
Ms. Blunt Rochester. I am going to turn to you, Doctor. Is
it Bocchini or--Bocchini. OK.
Dr. Bocchini, could you just briefly--I have like 40
seconds, and it's a lot--describe the difference between
testing and screening, and also you mentioned in your testimony
about the fact that in addition to the health--the great health
outcomes it is also cost savings. Can you share a little bit
about those?
Dr. Bocchini. So many of the conditions that we screen for
if untreated will cause developmental delays which then end up
causing a significant amount to address and manage by early
screening and a diagnosis before those permanent changes occur
you reduce those costs?
So for many issues that's what happens.
Ms. Blunt Rochester. Thank you. Thank you so much.
Lastly, I will submit questions for the record, because I
want to ask questions about the LEND program. I want to ask
questions about the respite care. So I will do that.
But I want to thank you so much for all of your work on
behalf of Americans. Thank you.
And I yield back.
Ms. Eshoo. The gentlewoman yields back.
The Chair now recognizes the gentleman from Florida, Mr.
Bilirakis, for his 5 minutes of questions.
Mr. Bilirakis. Thanks you so very much.
Ms. Eshoo. And for all advocates that are here, Congressman
Bilirakis's father preceded him in the Congress, and he was
chair of this subcommittee. So the tradition continues. You are
recognized.
Mr. Bilirakis. Oh, we care a great deal about these issues,
Madam Chair, thank you, as you do to.
Thank you very much.
While I have some prepared questions, but I was looking
into H.R. 2035 and I wanted to, for the benefit of the people
listening back home, tell me what it encompasses. I am
concerned specifically--is it Medicare-Medicaid patients who
are severely--have severe illnesses. I am also specifically
concerned. Do wounded warriors--I know it's mentioned in the
bill with regard to wounded warriors--do they qualify for the
respite care? In other words, their caregivers? That's so
important as well. Please.
Ms. Kagan. What's unique about Lifespan Respite program is
that there are no stringent eligibility criteria. So this
enables the state to identify where the biggest gaps are in
services and try to target their limited dollars to those
individuals.
So folks like wounded warriors and there is a VA program
for respite but very often these individuals are either not
qualifying for the VA program or there are not the types of
respite options, especially the younger veterans where they're
comfortable getting the respite services.
So we have continued to partner, especially at the state
level--the state respite coalitions--have invited the VA
caregiver coordinators to participate in their coalitions so
that they can find additional respite resources for those
individuals.
So, again, there's not a specific targeting. If a state is
providing consumer-directed respite vouchers, they're very
often targeting it to adults between the ages of 18 and 60 or
with conditions like MS or ALS or spinal cord injuries or
adults with intellectual developmental disabilities for whom no
other respite services or public funding sources exist, people
with mental health issues where it's very hard to find respite
services or dollars to support that.
Families who are on Medicaid waiver waiting lists are often
the first to be served under Lifespan programs too. So it's
really--it's the gap filling program. It's those respite
services. Families are eligible. If they're not getting
services anywhere else from any other public program.
Mr. Bilirakis. Very good.
Yes, so it's basically up to the states. OK.
Dr. Bocchini, as lead sponsor of the congenital heart
reauthorization act which is now law, and the co-chair of the
rare disease caucus, I certainly understand the importance of
early screening and the critical chance and hope that it
affords patients and their care team.
What is the current state of newborn screening does it vary
from state to state? I want to ask this question specifically.
I know it covers hearing loss. In other words, the baby's
screen for hearing loss.
How about visual impairment? Does it cover that as well?
Dr. Bocchini. Official impairment is not covered by newborn
screening.
Mr. Bilirakis. We have to do something about that.
Dr. Bocchini. Well, there are a number of things that are
considered to be practice parameters that all babies are
screened for in the newborn period by physicians and are not
part of by public health program.
The public health program for newborn screening is really
dedicated to things that can be done in a public health
laboratory as well as hearing, screening, and critical
congenital heart disease screening, or point of care tests, and
those are the only difference than--other than the blood heal
stick blood test.
So certain things would be considered normal practice
parameters and out of the public health realm.
Mr. Bilirakis. So you answered most of my questions here.
Screening with our proper follow-up actions is so very
important. If you don't have the follow up actions it's
basically moot.
After an initial newborn screening identifies a condition,
patients, or the caregiver in this case, the education options
and the resources become critical, especially in rural areas
and low-income areas and medically underserved communities.
What does that handoff currently look like? Is that room--
is there room for improvement to fall off? Because that's so
important as well.
If you could maybe elaborate a little bit, sir. That's
important that we follow up.
Dr. Bocchini. Thank you. It's a very important question.
Newborn screening is a program. It's really not a single
test that's done in a laboratory. So it's very important that
children who are identified are rapidly referred to the
specialist or the individualist who can then manage that
child's care. So we would call that short-term follow up.
And then once short-term follow up is assured, a diagnosis
is made, and then the management is evolved, then long-term
follow-up becomes really important so that that child is not
lost to follow-up.
Yes, we can improve that. There are a lot of gaps that may
exist in individual states based on resources, based on having
enough subspecialty providers to take care of those patients,
and then having the resources for the care that's needed
surrounding that specific diagnosis.
So I think there is an opportunity with this
reauthorization to have more funds go to states through the
HRSA program to help improve short-term, long- term--especially
long-term follow up of those patients.
Mr. Bilirakis. Very good. I yield back, Madam Chair. Thank
you so much.
Ms. Eshoo. The gentleman yields back. The Chair recognizes
Dr. Ruiz from California for his 5 minutes of questions.
Mr. Ruiz. Thank you, Madam Chair. I appreciate the
opportunity. Thank you all of you for coming today and
testifying.
The Emergency Medical Services for Children's program helps
train providers on how to coordinate care for kids in the
emergency department.
When I first ran I used to say, man, I don't care if it's a
Republican idea or if it's a Democratic idea. I just care if
it's a darn good idea and I am going to support it.
This bill is--has been introduced by a Republican,
Representative King. It's a hell of a good idea. I support this
bill 100 percent, and I believe Democratic Representative
Castor is on it so it's a very good bipartisan bill. And I will
back any good idea from a Republican any day any time.
As an emergency department physician, I can assure you that
it is critical that there are protocols set specifically for
the unique needs of children, and it is not just important for
physicians.
My wife, Monica, is an emergency nurse and I know you have
a doctorate in nursing, Dr. Howard, and she would say the same
thing.
So Dr. Howard, what are some examples of the models that
have been developed for pre- hospital and hospital use, and how
did this program help to do that, especially in terms of the
regional care--EMS care--for kids?
Dr. Howard. Well, there's a variety of different examples
and I have alluded to the pediatric readiness a little bit
earlier. In fact, one of the members actually talked a little
bit about what had happened in their state.
But I think the pediatric readiness which is some of the
work that's really actually occurring presently--all the
different pediatric readiness grants--is something that has
really benefited all spectrums because it makes sure that not
only is EMS ready but the emergency department is ready with
not just the knowledge, training, and expertise but they also
have dedicated physician and nurse champions for pediatric
care, which is a little bit of a different focus than we've
seen with some of the other EMSC programs. And so this
pediatric readiness component I think is really critical.
Mr. Ruiz. Dr. Howard, you know as well as I do that when
you're in a rural emergency department, or even an urban
emergency department, that when a very sick kid comes to you
everybody just tightens up a little and a lot of it is going to
be quickly stabilize, resuscitate, and then transfer to a
tertiary Children's Hospital.
And unfortunately, many locations in rural American they
don't have nearby and therefore they have to call the medical
flight physicians and nurses to come and transport that
critically sick patient to get lifesaving care where they need
it.
And having grown up in a rural impoverished community of
Coachella, California, that's very underserved I've seen
barriers to care that don't necessarily exist in nonrural
settings and those hospitals face a unique set of needs.
I've also been a strong advocate for tribes and the Indian
Health Service, and who often face even greater access issues
since long before I came to Congress.
So, Dr. Howard, can you explain specifically how this
program helps families living in underserved rural areas or
tribal communities.
Dr. Howard. It specifically helps those areas because the
EMSC partnership grants have taken services to those rural
areas, and I will use my state for an example.
We only have two level one children's facilities in our
entire state. So you either come to Louisville or Lexington.
Mr. Ruiz. What state is that again? I am sorry. What state
it that?
Dr. Howard. Kentucky.
Mr. Ruiz. Kentucky only has two children's hospitals for
the entire state?
Dr. Howard. Correct. And we are not geographically large
but we are size wise. It takes a significant amount of time. So
if you come from far eastern Kentucky by helicopter it's still
almost an hour by flight. An hour when you're critically ill or
injured and you have already had stabilization at another
facility is challenging.
Mr. Ruiz. And that's why we got to protect the CHIP
programs, the Medicaid programs for the children and families
in Kentucky. You keep cutting those and putting on these work
requirements you're going to decrease the people that are
insured. It's going to make things worse for the residents of
Kentucky.
So and we also have to make sure we fund those medical
flights because without them time is tissue, right, in the
emergency department. You don't get the appropriate timely car
for strokes and heart attacks, you're done. It's going to be
much more costly in the future than the cost of a medical
flight because you're going to be paying for a lifetime of
rehabilitation and loss of work.
So this program includes the EMSC data center which
provides monetary data management.
Dr. Howard, what do we do with the data that we are
collecting and how does it improve health outcomes for children
in the emergency department setting?
Dr. Howard. So the PECARN network has been phenomenal in
terms of providing best evidence and shared the best evidence,
and one of the things I mentioned in my oral testimony earlier
is I think of the best outcomes of that data, which is not
getting a CAT scan on every child that presents to the
emergency department for years if you had a minor head injury
and a loss of consciousness, automatic CAT scan.
We don't do that now. We observe these children. We have
parameters, and so we are not, number one, unnecessarily
exposing them to radiation but we are also not spending dollars
that we don't have to spend.
And so that makes a difference, and these children do very
well.
Mr. Ruiz. Ms. Chair, I just want mention that she's
absolutely correctly that they found that kids who get these
CAT scans are at higher risk of getting leukemia, lymphomas,
and other blood-borne cancers. And so now we are trying to
really protect them from getting these CAT scans.
Ms. Eshoo. The gentleman yields back.
Mr. Ruiz. Yes.
Ms. Eshoo. I just want to--I can't help but add when you
talked about air ambulances that we have to make sure that
people don't suffer heart attacks when they get the bill for
it.
The Chair now has the pleasure of recognizing the gentleman
from Montana, Mr. Gianforte.
Mr. Gianforte. Thank you, Chairwoman Eshoo, and thank you
for the experts in your testimony today. These are very
important topics.
I am a proud sponsor of the Autism CARES Act. I know
funding for this program has been used to identify thousands of
kids who otherwise may not have been diagnosed as on the
spectrum.
We have seen nearly a four-fold increase in the number of
students with autism receiving special education services in
Montana schools in the last ten years.
Montana families rely on the services and support outlined
in this bill. Currently, Montana is one of only a handful of
states without their own LEND training program.
But I know Montana is laying the groundwork to establish
this training within our state. This program is especially
important in rural areas where it could be difficult to find
providers who can screen, diagnose, and help with the therapy
needed.
Over the last 12 years Montanans have had to travel to Utah
to participate in the LEND program. I know it would really help
our state to have more--a more local LEND program.
Dr. Hewitt, what challenges to children with autism face in
rural communities?
Dr. Hewitt. I was just in your state last week talking to
them about gearing up for a LEND program. So they're definitely
gearing up for it.
I think in answer to your question, the biggest challenge
is having people with the training and the expertise where they
live that can do the assessment--the diagnosis and the
intervention.
And in our rural communities in nearly every state that's a
real challenge. One of the things that many LEND programs are
doing now is trying to use telehealth as an opportunity to get
that expertise to rural communities.
Mr. Gianforte. Can you talk a little more about how
telehealth is being used in the LEND program?
Dr. Howard. Sure. I will speak to our area. One of our big
challenges in the metropolitan area, Minneapolis/St. Paul, we
have a lot of programs. We have a lot of clinical services. We
have a lot of trained professionals.
In Greater Minnesota, we don't, and so at our LEND program
we have our LEND faculty who are through the internet, through
secured way, and with training to the families, they're
actually doing assessment diagnostic and intervention, and then
monitoring that intervention from screen to screen in a family
home.
Mr. Gianforte. So the LEND program, aspects of it, can be
implemented effectively through telemedicine?
Dr. Howard. Absolutely.
Mr. Gianforte. OK. Great. And we can't have a specialist
for every discipline in every rural town in the U.S. This is a
really important part.
Dr. Howard. Absolutely.
Mr. Gianforte. I appreciate you making that point. At what
age are children usually evaluated and diagnosed with autism?
Dr. Howard. That really varies. It varies based on state.
It varies based on community. On average, it's just under five
years of age when a child gets their first diagnosis.
But one thing we do know is that there were signs and there
were comments from preschool teachers, from pediatricians, that
identified perhaps characteristics of autism that go
undiagnosed or get deferred until a child enters school.
Mr. Gianforte. Is that diagnosis delayed at all in rural
areas?
Dr. Howard. It is, and that's really because there aren't--
a clinical diagnosis often is delayed because there aren't
experts to provide that intervention.
Mr. Gianforte. So what are the effects, if any, for
children who are diagnosed with autism later in life versus
earlier?
Dr. Howard. Well, we know that the earlier that you're
identified the earlier that you get intervention, the better
your communication skills are and the better your educational
outcomes are, and overall in general your life, your work, your
capacity to earn a living, all of those things matter.
Mr. Gianforte. So the path to a more productive life is
benefited with an earlier diagnosis?
Dr. Howard. Correct.
Mr. Gianforte. OK. Thank you.
Ms. Kagan, is it more difficult to receive Lifespan respite
care in rural communities?
Ms. Kagan. As with any other program, especially when we
are facing the direct service workforce shortage, of course it
is harder.
Oklahoma, though, has had a wonderful program in place that
they initiated with their initial Lifespan respite grant to do
mobile respite where they partnered with state department of
transportation to get a van that was no longer used by the
state, and they transfer workers and volunteers from the more
urban areas out to the rural areas to provide a day of respite
for families in rural communities. It's a wonderful model.
Mr. Gianforte. Can you speak--can you speak briefly to the
impact of the Lifespan Respite Care Reauthorization Act on
rural communities?
Dr. Howard. Again, I think it's one of the few programs
because it allows states to use funds to not only help families
pay for respite but it allows them to build new services and
test out these innovative models like the volunteer
transportation.
Mr. Gianforte. OK. Thank you for your indulgence, Madam
Chair.
I yield back.
Ms. Eshoo. You're most welcome. The gentleman yields back.
Now I would like to recognize the gentleman from
Pennsylvania, Mr. Doyle, who's waiving onto the subcommittee.
He's the chairman of the Communications and Technology
Subcommittee of Energy and Commerce, and he and--we all need to
thank both Mr. Doyle and Mr. Smith, who's also here and will
follow him, because inside the Congress these are the two top
advocates relative to autism, not only with their legislation
but with the caucus that they have formed and I want to salute
both of them.
So, Mr. Doyle, you have 5 minutes and take it away, and we
are all really very grateful to you for your leadership,
especially when it matters.
Mr. Doyle. Thank you, Madam Chair.
Thank you, and I appreciate you allowing us to waive onto
the subcommittee today to ask some questions.
And I want to recognize my good friend, Chris Smith.
About 20 years ago, Chris and I were members of the
Veterans Affairs Committee and we were sitting down having a
conversation and that's when the idea come up Chris was telling
me about a spike in autism in Brick Township, New Jersey--that
they thought maybe there was an environmental cause to this.
And I was relaying to him my experiences with a family back
in Pittsburgh, the Torisky family--Dan Torisky, who eventually
became the national president of the Autism Society of America,
and that's where we come with the idea to start the caucus
because a lot of members of Congress didn't know what autism
was and not much was being done, and Chris has been a real
pleasure to work with and a real champion for the cause. I
couldn't have a better co-chair of the caucus than Chris Smith
and I want people to know that.
Dr. Hewitt, we have heard a lot about early intervention.
Can you share some of the information about the CDC's ``Learn
the Signs and Act Early'' and some of the other resources that
are available? And how can family use these resources to help
them identify these signs?
Dr. Hewitt. Sure. As I said in my introduction, we have one
of the ``Learn the Signs Act Early'' programs in Minnesota.
We've been fortunate to have that.
We, as a program, have decided to use those resources to
develop educational materials and outreach to communities--to
various immigrant communities, so our Somali community, our
Hmong community, our other East African community--as a way to
get parent-to-parent information.
So we've developed brochures. We've developed talking,
educational like in-person educational programs to work to
train families so that they can go into their communities and
train other families about what to look for in their child's
development and what concerns might arise and then what to--
where to go if they identify something.
Mr. Doyle. So Dr. Hewitt, we have a LEND program in
Pittsburgh and it's been invaluable to us. I am just curious.
How do the LEND programs around the country interact with one
another and could LEND programs improve interaction to create
more of a national network?
Dr. Hewitt. That's one of the great things about the LEND
program. Through the Association of University Centers on
Disability we have a network and we do work very closely
together.
Next month we'll come together for an Autism CARES national
conference where the LEND directors and LEND staff get together
and we share what we are doing in our various states, learn
from one another about effective programs and then can take
that back and replicate it.
Mr. Doyle. Tell me, what are some of your experiences and
concerns as a family member that are--that you feel are not
being addressed in your research and research that's taking
place around the country?
Dr. Hewitt. Again, I've said it before in this hearing. But
issues related to transition, youth transitioning to adulthood,
and employment, so specialized employment programs that help
support individuals who--with autism who are young adults and
adults to find and keep their employment. It's a big area.
Mr. Doyle. Yes, I can't tell you how many families that I
talk to worry about as their kids are aging out of services and
as we know the first person I met with autism is now a 50 some
year old adult. It's not a developmental disability that kills
you, and families worry what happens to their children when
they're no longer around. And, as we know, the spectrum,
depending on where you sit on that spectrum, that can be a real
concern.
So it's one of the things we are trying to address in the
legislation.
Let me ask, in your opinion, what would be the benefits of
CDC increasing a surveillance of adults with ASD?
Dr. Hewitt. I think it's really important and, as I said,
we are working toward that by adding a small number of states
that will be looking at 16-year-olds.
We really just don't have prevalence data about adults with
autism in the United States, and what the prevalence data does
is help policy makers at that local and state level plan for
services and supports.
Mr. Doyle. Madam Chair, I see my time is expiring.
I would like to seek unanimous consent to enter nine
letters of support from the following organizations into the
record: Autism Speaks, two letters from them, the Autism
Society of America, Association of University Centers on
Disabilities, American Academy of Pediatrics, the National
Association of Councils on Developmental Disabilities, National
Council on Severe Autism, Research America, and a letter of
support from a diverse group of disability and healthcare
organizations.
Ms. Eshoo. So ordered.
[The information appears at the conclusion of the hearing.]
Ms. Eshoo. And we just subtracted those I think
successfully from my long list. But there's a real honor roll
of organizations. I thank the gentlemen.
I now would like to ask for unanimous consent of the
ranking member of our subcommittee, because Congressman Smith
is with us.
But we have a rule at the committee that if you're not part
of the full committee that you can't speak. But he's here and I
think he deserves--I really want to recognize him so I ask for
unanimous consent of Congressman Smith be able to participate
now and recognize him for his 5 minutes of comments, questions.
Welcome, and thank you for your very fine work. We are all
indebted to you for your leadership.
Mr. Smith. Chairwoman Eshoo, thank you for not only your
strong personal but your professional commitment to all of
these important health issues including and especially the
Autism CARES legislation, which is and continues to be
historic. It is already making a difference but this new
iteration, and Mike Doyle, you can't find a better friend and
champion for combatting autism and helping across the board.
You know, one of the features of our new bill is to make it
the Lifespan--the emphasis is no way diminished towards helping
early childhood and children.
But we now know that about 50,000 people matriculate from
the minor to adulthood, and there's so much that we don't know,
so many needs that have to be met including housing.
Our last Autism CARES Act made it very clear that we wanted
a full assessment from GAO. We did that by letter in the bill
from the administration.
What is out there? What are the capabilities of local,
federal, and state governments to meet this growing and really
almost exponentially growing need that is largely unmet.
I want to thank Dr. Burgess, who has been a great friend on
so many issues. I chaired for years--now I am ranking member--
of the Africa Global Health Global Human Rights Committee, and
had hearings on Ebola and neglected tropical diseases, Zika,
HIV/AIDS, malaria, TB, autism, and Alzheimer's, and Dr. Burgess
was at so many of those hearings I thought he was a member of
the committee.
So I want the thank him for his expertise as well because--
and his concern.
This bill is, I think, going to make a difference. It was
written with close collaboration with those organizations that
was just cited. Autism CARES and Speaks have been game
changers.
It does provide a little over $1.7 billion over five years.
When I brought CDC to New Jersey in 1997, because we had a
prevalence spike, we thought, that was just Brick Township.
CDC, to their shock and dismay, found when they did their
data calls that other townships had similar prevalence
increases that could not be explained.
You know what they were spending then for--at CDC? $287,000
per year straight line for five years.
I even--I asked then, what does that buy, a desk? You can't
even do a review of literature that's credible with that kind
of puny spending.
So that has done up $23 million for CDC per million now,
$53 million for HRSA and Mike is planning on offering an
amendment that tracks our appropriations number of $296 million
per year for NIH.
If you look at all of the data--this is the way an NIH
program and a CDC coordinated program should run, they have a
strategic plan.
IIAC does a wonderful job--they're not perfect, but a
wonderful job--and they ask questions and then they assign
projects so there's less duplication and, hopefully, no
duplication of effort.
We have 126 co-sponsors on this bill. Again, Mike and I
have worked across the aisle. They say that bipartisanship is
dead. Not here and not with my good friend from Pennsylvania.
So I want to thank him for that. We also have included on
IIAC, what I think, what we think is so important. Labor,
Justice, and HUD have now been included. So we get additional
eyes and ears and buy-in from this whole of government
approach.
So it's really a historic bill. It needs to pass early. We
never know what's going to happen in the Senate. But we have
had conversations with Lamar Alexander and I do believe he's
likely to hold it at the desk.
Previous times we had holds galore on it. The Senate's
arcane rules make it very hard to get important bills passed.
And, you know, we are working it proactively to try to mitigate
the possibility of different members putting a hold on it so
that it hopefully gets to the president and then signed.
Mike and I--and this is one of the untold stories--the
reason why NIH and CDC is up the way it is, we lobbied the
daylights out of our friends and we are our friends, whether it
be Tom Cole or others, when he was chairman of the Labor HHS
bill to keep putting that number up because the need is
overwhelming.
We don't have our arms around this yet, and as has been
said--and Dr. Hewitt, thank you for your testimony and
leadership--we are still expanding and it is global.
I have a bill that I've been unsuccessful in getting
passed. That would be a global autism bill, because it's
everywhere. It's all over Africa. It's all over Latin America,
it's everywhere. And we have only made a small dent in that.
But the United States is leading. It is bipartisanship.
Mike, thank you. You have been a great friend and a great
champion.
I yield back. Thank you, Chairwoman Eshoo, for this time.
Ms. Eshoo. The gentleman yields back.
And we are so pleased that both of you were here today. It
means everything to whomever is listening certainly to all of
the advocates and all of the members of the subcommittee.
I think that we don't have any members here for any
additional questions. So I want to thank this panel of
witnesses.
I think you have been outstanding. You have answered the
questions directly. We have learned from you. You have deepened
our knowledge on the issues.
These are four bills that deserve to move on to being
reauthorized. They're important for the American people.
And, you know, these are words that are written on paper
but I always say, you know, you put legs, you put feet on those
words they walk right into people's lives.
So thank you for testifying today. On behalf of all the
members of the subcommittee we are really grateful to you.
And remind members--of course, there are only a couple of
us left in the room now--that pursuant to committee rules each
Member has ten days to submit additional questions for the
record to be answered by the witnesses who have appeared.
So I ask each witness that you respond promptly to an of
the questions that you may receive from members.
And I now would like for unanimous consent to enter into
the record the following. It's a long list. These are the
documents that I would like to place in the record:
The Coalition Letter in support of H.R. 2507, statement for
the March of Dimes, in support of H.R. 2507, statement from the
Aiden Jack Sager in support of 2507, a letter from AARP in
support of 2035, a letter from the Consortium for Citizens with
Disabilities in support of 2035, a letter from the American
Speech Language Hearing Association in support of 1058, a
letter from the Association of University Centers on
Disabilities in support of 1058, Coalition letter in support of
H.R. 1058, a letter from Research America in support of 1058,
coalition letter in support of 776, and a statement from the
American Academy of Pediatrics in support of 776.
Hearing no objections, so ordered.
[The information appears at the conclusion of the hearing.]
Ms. Eshoo. And with that, the subcommittee is adjourned.
Thank you, everyone.
[Whereupon, at 12:37 p.m., the committee was adjourned.]
[Material submitted for inclusion in the record follows:]
Prepared Statement of Hon. Elliot L. Engel
Madame Chairwoman Eshoo, thank you for holding today's
important hearing on children's health care programs.
I want to commend Representatives Chris Smith (R-NJ) and
Mike Doyle (D-PA) for their work on the Autism Collaboration,
Accountability, Research, Education and Support (CARES) Act.
This bipartisan legislation will reauthorize funding for
critical federal health programs that serve Americans with
Autism Spectrum Disorder (ASD), including cutting-edge research
at the National Institutes of Health. In fiscal year 2018, my
home state of New York received about $22 million from NIH for
autism-related research. I am pleased that this legislation
reauthorizes funding for this important work at the NIH.
The Autism CARES Act also includes provisions that will
improve the Interagency Autism Coordinating Committee or IACC.
This multidisciplinary panel has played a key role in helping
shape and guide federal programs that support ASD research and
treatment. The Autism CARES Act improves this panel by
broadening its membership to include officials from different
federal agencies, including the Department of Justice and
Department of Labor. This bipartisan legislation will also
elevate the individual's voice by enabling more Americans with
ASD and their families to share their experiences with IACC.
I look forward to working with my colleagues on both sides
of the aisle to advance the Autism CARES Act as well as the
other important bills that we are considering today, including
the Newborn Screening Saves Lives Reauthorization Act.
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