Mr. Speaker, I thank my colleague and friend, Dr. Ruiz, for yielding the time. Mr. Speaker, on behalf of families of children with complex medical needs--and there are many families like this all across America--I rise to urge approval of…
Mr. Speaker, I thank my colleague and friend, Dr. Ruiz, for yielding the time.
Mr. Speaker, on behalf of families of children with complex medical needs--and there are many families like this all across America--I rise to urge approval of H.R. 1839, which includes a bill I have been working on for a number of years with my colleagues, including former Representative Joe Barton. It is called the ACE Kids Act.
We drafted the Advancing Care for Exceptional Kids Act a few years ago with a simple but important goal of putting children and their families first. The bill authorizes the creation of cost-saving and time-saving health homes where specialized care is coordinated in a high-quality setting.
Mr. Speaker, the children with complex medical conditions and their families are heroic, like Caroline West in my hometown of Tampa. She has a rare genetic condition, cerebral palsy, and a seizure disorder. She can't walk, and it is very difficult for her to speak, but she attends school part time and enjoys the life of a typical teenager, in many respects.
Lucy Ferlita is the only living person in the United States with early onset myopathy with areflexia, respiratory distress, and dysphagia. Very little is known about this disease, but we know that it is very difficult for her to eat. She has to have a feeding tube, a ventilator to breathe, and nursing care 24 hours a day.
Jaden Velasquez has a congenital heart defect.
Lakota Lockhart has a central nervous system disorder that causes him to not be able to breathe while he sleeps.
I met all of these kids back home in Tampa at St. Joseph's Children's Hospital. St. Joe's has a world-renown Chronic-Complex Clinic that was started 16 years ago by a compassionate pediatrician, Dr. Daniel Plasencia. This ACE Kids Act is modeled upon their work and the other good work being done at children's hospitals across this country.
The bill provides an incentive for States to establish health homes to
better coordinate care for kids with medical complexities. It also directs HHS to provide guidance to States on best practices.
Mr. Speaker, I urge my colleagues to adopt this bill with the ACE Kids Act included.
Mr. Speaker, I include in the Record a letter from a whole host of organizations thanking us for our leadership and for introducing this bipartisan legislation to improve care for children with complex medical conditions.
March 25, 2019.
Hon. Chuck Grassley,
Washington, DC.
Hon. Michael Bennet,
Washington, DC.
Hon. Kathy Castor,
Washington, DC.
Hon. Gus Bilirakis,
Washington, DC.
Hon. Anna Eshoo,
Washington, DC.
Hon. Jaime Herrera Beutler,
Washington, DC.
Dear Sens. Grassley and Bennet, and Reps. Castor,
Bilirakis, Eshoo, and Herrera Beutler: As national
organizations committed to children's health, we write in
strong support of the ``Advancing Care for Exceptional Kids
Act of 2019'' (ACE Kids Act, S. 317/H.R. 1226), which has
been incorporated into the Medicaid Services Investment and
Accountability Act of 2019 (H.R. 1839). We thank you for your
leadership in introducing this bipartisan legislation to
improve care for children with complex medical conditions in
the Medicaid program.
Children with complex medical conditions have chronic life-
limiting illnesses and disabilities, and often see six or
more specialists and a dozen or more physicians. Under the
current Medicaid system, parents of children with multiple,
life-threatening disabilities struggle to coordinate the
complex care of their kids, which often requires travelling
to out-of-state providers. The ACE Kids Act works to create a
patient-centered, pediatric-focused delivery system for this
unique population of children. It is an important step in
fixing the current fragmented system for children with
complex medical conditions, ensuring ready access to care and
reducing the burden on their families.
Under the ACE Kids Act, specially-designed health homes
created for children with complex medical conditions will
employ national quality standards and coordinate care--both
essential to improving overall quality of care. These health
homes will include the full range of acute, post-acute and
primary care providers, and will focus on outpatient care to
ensure children get the care that they need in the most
appropriate setting closest to home while reducing
unnecessary hospitalizations and emergency room visits. The
ACE Kids Act--which is voluntary for states, families and
providers--will also help families access the array of
outpatient and community services and supports needed by
these children.
Providing children with complex medical conditions enrolled
in Medicaid the best possible care is a national challenge,
and the ACE Kids Act will bring us closer to ensuring these
vulnerable children receive the care they need. We are proud
to support the ACE Kids Act, and we look forward to working
with you to advance this critical legislation this year.
Sincerely,
American Academy of Pediatrics; American Association for
Psychoanalysis in Clinical Social Work; American Association
of Child and Adolescent Psychiatry; The American Board of
Pediatrics; American College of Cardiology; American College
of Surgeons; American Heart Association; American Physical
Therapy Association; American Psychological Association;
American Society of Echocardiography; American Thoracic
Society; America's Essential Hospitals; Association of
American Medical Colleges; Association of Medical School
Pediatric Department Chairs; Autism Society of America;
Autism Speaks.
Children's Cause for Cancer Advocacy; Children's Hospital
Association; ChildServe; Epilepsy Foundation; Family Voices;
March of Dimes; Maxim Healthcare Services; Mended Little
Hearts; Moms Rising; National Association for Children's
Behavioral Health; National Association of Pediatric Nurse
Practitioners; National Board for Certified Counselors;
National Down Syndrome Society; Pediatric Congenital Heart
Association; Tricare for Kids Coalition; Vizient.