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H.R.4365
Children's Health Act of 2000 (Enrolled Bill (Sent to
President))
TITLE VII--EARLY DETECTION , DIAGNOSIS, AND TREATMENT
REGARDING HEARING LOSS IN
INFANTS
SEC. 701. PURPOSES.
The purposes of this title are to clarify the authority within the Public
Health Service Act to authorize statewide newborn and infant hearing screening, evaluation and
intervention programs and
systems, technical assistance, a national applied research program, and
interagency and private sector collaboration for policy development, in order
to assist the States in making progress toward the following goals:
(1) All babies born in hospitals in the United States and its
territories should have a hearing screening before leaving the
birthing facility. Babies born in other countries and residing in the United
States via immigration or adoption should have a hearing screening as early as possible.
(2) All babies who are not born in hospitals in the United States and
its territories should have a hearing screening within the first 3
months of life.
(3) Appropriate audiologic and medical evaluations should be conducted
by 3 months for all newborns and infants suspected of having hearing loss to allow appropriate
referral and provisions for audiologic rehabilitation, medical and early intervention before the age of 6
months.
(4) All newborn and infant hearing screening programs and
systems should include a component for audiologic rehabilitation, medical
and early intervention options that ensures
linkage to any new and existing state-wide systems of intervention and rehabilitative
services for newborns and infants with hearing loss.
(5) Public policy in regard to newborn and infant hearing screening and intervention should be based on
applied research and the recognition that newborns, infants, toddlers, and
children who are deaf or hard-of-hearing have unique language,
learning, and communication needs, and should be the result of consultation
with pertinent public and private sectors.
SEC. 702. PROGRAMS OF HEALTH RESOURCES AND SERVICES ADMINISTRATION, CENTERS
FOR DISEASE CONTROL AND PREVENTION, AND NATIONAL INSTITUTES OF HEALTH.
Part P of title III of the Public Health Service Act, as added by section
501 of this Act, is amended by adding at the end the following section:
`SEC. 399M. EARLY DETECTION , DIAGNOSIS, AND TREATMENT
REGARDING HEARING LOSS IN
INFANTS.
`(a) STATEWIDE NEWBORN AND INFANT HEARING SCREENING, EVALUATION AND
INTERVENTION PROGRAMS AND
SYSTEMS- The Secretary, acting through the Administrator of the Health
Resources and Services Administration, shall make awards of grants or
cooperative agreements to develop statewide newborn and infant hearing screening, evaluation and
intervention programs and
systems for the following purposes:
`(1) To develop and monitor the efficacy of state-wide newborn and
infant hearing screening,
evaluation and intervention
programs and systems. Early
intervention includes referral
to schools and agencies, including community, consumer, and parent-based
agencies and organizations and other programs mandated by part C of the
Individuals with Disabilities Education Act, which offer programs
specifically designed to meet the unique language and communication needs of
deaf and hard of hearing
newborns, infants, toddlers, and children.
`(2) To collect data on statewide newborn and infant hearing screening, evaluation and
intervention programs and
systems that can be used for applied research, program evaluation and policy
development.
`(b) TECHNICAL ASSISTANCE, DATA MANAGEMENT, AND APPLIED RESEARCH-
`(1) CENTERS FOR DISEASE CONTROL AND PREVENTION- The Secretary, acting
through the Director of the Centers for Disease Control and Prevention,
shall make awards of grants or cooperative agreements to provide technical
assistance to State agencies to complement an intramural program and to
conduct applied research related to newborn and infant hearing screening, evaluation and
intervention programs and
systems. The program shall develop standardized procedures for data
management and program effectiveness and costs, such as--
`(A) to ensure quality monitoring of newborn and infant hearing loss screening,
evaluation, and intervention
programs and systems;
`(B) to provide technical assistance on data collection and
management;
`(C) to study the costs and effectiveness of newborn and infant hearing screening, evaluation and
intervention programs and
systems conducted by State-based programs in order to answer issues of
importance to State and national policymakers;
`(D) to identify the causes and risk factors for congenital hearing loss;
`(E) to study the effectiveness of newborn and infant hearing screening, audiologic and
medical evaluations and intervention programs and systems
by assessing the health, intellectual and social developmental, cognitive,
and language status of these children at school age; and
`(F) to promote the sharing of data regarding early hearing loss with State-based
birth defects and developmental disabilities monitoring programs for the
purpose of identifying previously unknown causes of hearing loss.
`(2) NATIONAL INSTITUTES OF HEALTH- The Director of the National
Institutes of Health, acting through the Director of the National Institute
on Deafness and Other Communication Disorders, shall for purposes of this
section, continue a program of research and development on the efficacy of
new screening techniques and technology, including clinical studies of
screening methods, studies on efficacy of intervention , and related
research.
`(c) COORDINATION AND COLLABORATION-
`(1) IN GENERAL- In carrying out programs under this section, the
Administrator of the Health Resources and Services Administration, the
Director of the Centers for Disease Control and Prevention, and the Director
of the National Institutes of Health shall collaborate and consult with
other Federal agencies; State and local agencies, including those
responsible for early intervention services pursuant to
title XIX of the Social Security Act (Medicaid Early and Periodic Screening,
Diagnosis and Treatment Program); title XXI of the Social Security Act
(State Children's Health Insurance Program); title V of the Social Security
Act (Maternal and Child Health Block Grant Program); and part C of the
Individuals with Disabilities Education Act; consumer groups of and that
serve individuals who are deaf and hard-of-hearing and their families;
appropriate national medical and other health and education specialty
organizations; persons who are deaf and hard-of-hearing and their families; other
qualified professional personnel who are proficient in deaf or hard-of-hearing children's language and who
possess the specialized knowledge, skills, and attributes needed to serve
deaf and hard-of-hearing
newborns, infants, toddlers, children, and their families; third-party
payers and managed care organizations; and related commercial
industries.
`(2) POLICY DEVELOPMENT- The Administrator of the Health Resources and
Services Administration, the Director of the Centers for Disease Control and
Prevention, and the Director of the National Institutes of Health shall
coordinate and collaborate on recommendations for policy development at the
Federal and State levels and with the private sector, including consumer,
medical and other health and education professional-based organizations,
with respect to newborn and infant hearing screening, evaluation and
intervention programs and
systems.
`(3) STATE EARLY DETECTION , DIAGNOSIS, AND INTERVENTION PROGRAMS AND SYSTEMS;
DATA COLLECTION- The Administrator of the Health Resources and Services
Administration and the Director of the Centers for Disease Control and
Prevention shall coordinate and collaborate in assisting States to establish
newborn and infant hearing
screening, evaluation and intervention programs and systems
under subsection (a) and to develop a data collection system under
subsection (b).
`(d) RULE OF CONSTRUCTION; RELIGIOUS ACCOMMODATION- Nothing in this
section shall be construed to preempt or prohibit any State law, including
State laws which do not require the screening for hearing loss of newborn infants or
young children of parents who object to the screening on the grounds that such
screening conflicts with the parents' religious beliefs.
`(e) DEFINITIONS- For purposes of this section:
`(1) The term `audiologic evaluation' refers to procedures to assess the
status of the auditory system; to establish the site of the auditory
disorder; the type and degree of hearing loss, and the potential
effects of hearing loss on
communication; and to identify appropriate treatment and referral options.
Referral options should include linkage to State coordinating agencies under
part C of the Individuals with Disabilities Education Act or other
appropriate agencies, medical evaluation, hearing aid/sensory aid assessment,
audiologic rehabilitation treatment, national and local consumer, self-help,
parent, and education organizations, and other family-centered
services.
`(2) The terms `audiologic rehabilitation' and `audiologic intervention' refer to procedures,
techniques, and technologies to facilitate the receptive and expressive
communication abilities of a child with hearing loss.
`(3) The term `early intervention' refers to providing
appropriate services for the child with hearing loss, including nonmedical
services, and ensuring that families of the child are provided
comprehensive, consumer-oriented information about the full range of family
support, training, information services, communication options and are given
the opportunity to consider the full range of educational and program
placements and options for their child.
`(4) The term `medical evaluation by a physician' refers to key
components including history, examination, and medical decision making
focused on symptomatic and related body systems for the purpose of
diagnosing the etiology of hearing loss and related physical
conditions, and for identifying appropriate treatment and referral
options.
`(5) The term `medical intervention' refers to the process
by which a physician provides medical diagnosis and direction for medical
and/or surgical treatment options of hearing loss and/or related medical
disorder associated with hearing loss.
`(6) The term `newborn and infant hearing screening' refers to
objective physiologic procedures to detect possible hearing loss and to identify
newborns and infants who, after rescreening, require further audiologic and
medical evaluations.
`(f) AUTHORIZATION OF APPROPRIATIONS-
`(1) STATEWIDE NEWBORN AND INFANT HEARING SCREENING, EVALUATION AND
INTERVENTION PROGRAMS AND
SYSTEMS- For the purpose of carrying out subsection (a), there are
authorized to be appropriated to the Health Resources and Services
Administration such sums as may be necessary for fiscal year 2002.
`(2) TECHNICAL ASSISTANCE, DATA MANAGEMENT, AND APPLIED RESEARCH;
CENTERS FOR DISEASE CONTROL AND PREVENTION- For the purpose of carrying out
subsection (b)(1), there are authorized to be appropriated to the Centers
for Disease Control and Prevention such sums as may be necessary for fiscal
year 2002.
`(3) TECHNICAL ASSISTANCE, DATA MANAGEMENT, AND APPLIED RESEARCH;
NATIONAL INSTITUTE ON DEAFNESS AND OTHER COMMUNICATION DISORDERS- For the
purpose of carrying out subsection (b)(2), there are authorized to be
appropriated to the National Institute on Deafness and Other Communication
Disorders such sums as may be necessary for fiscal year 2002.'.
TITLE VIII--CHILDREN AND EPILEPSY
SEC. 801. NATIONAL PUBLIC HEALTH CAMPAIGN ON EPILEPSY; SEIZURE DISORDER
DEMONSTRATION PROJECTS IN MEDICALLY UNDERSERVED AREAS.
Subpart I of part D of title III of the Public Health Service Act (42
U.S.C. 254b) is amended by adding at the end the following section:
`SEC. 330E. EPILEPSY; SEIZURE DISORDER.
`(a) NATIONAL PUBLIC HEALTH CAMPAIGN-
`(1) IN GENERAL- The Secretary shall develop and implement public health
surveillance, education, research, and intervention strategies to improve
the lives of persons with epilepsy, with a particular emphasis on children.
Such projects may be carried out by the Secretary directly and through
awards of grants or contracts to public or nonprofit private entities. The
Secretary may directly or through such awards provide technical assistance
with respect to the planning, development, and operation of such
projects.
`(2) CERTAIN ACTIVITIES- Activities under paragraph (1) shall
include--
`(A) expanding current surveillance activities through existing
monitoring systems and improving registries that maintain data on
individuals with epilepsy, including children;
`(B) enhancing research activities on the diagnosis, treatment, and
management of epilepsy;
`(C) implementing public and professional information and education
programs regarding epilepsy, including initiatives which promote effective
management of the disease through children's programs which are targeted
to parents, schools, daycare providers, patients;
`(D) undertaking educational efforts with the media, providers of
health care, schools and others regarding stigmas and secondary
disabilities related to epilepsy and seizures, and its effects on
youth;
`(E) utilizing and expanding partnerships with organizations with
experience addressing the health and related needs of people with
disabilities; and
`(F) other activities the Secretary deems appropriate.
`(3) COORDINATION OF ACTIVITIES- The Secretary shall ensure that
activities under this subsection are coordinated as appropriate with other
agencies of the Public Health Service that carry out activities regarding
epilepsy and seizure.
`(b) SEIZURE DISORDER; DEMONSTRATION PROJECTS IN MEDICALLY UNDERSERVED
AREAS-
`(1) IN GENERAL- The Secretary, acting through the Administrator of the
Health Resources and Services Administration, may make grants for the
purpose of carrying out demonstration projects to improve access to health
and other services regarding seizures to encourage early detection and treatment in children
and others residing in medically underserved areas.
`(2) APPLICATION FOR GRANT- A grant may not be awarded under paragraph
(1) unless an application therefore is submitted to the Secretary and the
Secretary approves such application. Such application shall be submitted in
such form and manner and shall contain such information as the Secretary may
prescribe.
`(c) DEFINITIONS- For purposes of this section:
`(1) The term `epilepsy' refers to a chronic and serious neurological
condition characterized by excessive electrical discharges in the brain
causing recurring seizures affecting all life activities. The Secretary may
revise the definition of such term to the extent the Secretary determines
necessary.
`(2) The term `medically underserved' has the meaning applicable under
section 799B(6).
`(d) AUTHORIZATION OF APPROPRIATIONS- For the purpose of carrying out this
section, there are authorized to be appropriated such sums as may be necessary
for each of the fiscal years 2001 through 2005.'.
TITLE IX--SAFE MOTHERHOOD; INFANT HEALTH PROMOTION
Subtitle A--Safe Motherhood Prevention Research
SEC. 901. PREVENTION RESEARCH AND OTHER ACTIVITIES.
Part B of title III of the Public Health Service Act, as amended by
section 601 of this Act, is amended by inserting after section 317J the
following section:
`SAFE MOTHERHOOD
`SEC. 317K. (a) SURVEILLANCE-
`(1) PURPOSE- The purpose of this subsection is to develop surveillance
systems at the local, State, and national level to better understand the
burden of maternal complications and mortality and to decrease the
disparities among population at risk of death and complications from
pregnancy.
`(2) ACTIVITIES- For the purpose described in paragraph (1), the
Secretary, acting through the Director of the Centers for Disease Control
and Prevention, may carry out the following activities:
`(A) The Secretary may establish and implement a national surveillance
program to identify and promote the investigation of deaths and severe
complications that occur during pregnancy.
`(B) The Secretary may expand the Pregnancy Risk Assessment Monitoring
System to provide surveillance and collect data in each State.
`(C) The Secretary may expand the Maternal and Child Health
Epidemiology Program to provide technical support, financial assistance,
or the time-limited assignment of senior epidemiologists to maternal and
child health programs in each State.
`(b) PREVENTION RESEARCH-
`(1) PURPOSE- The purpose of this subsection is to provide the Secretary
with the authority to further expand research concerning risk factors,
prevention strategies, and the roles of the family, health care providers
and the community in safe motherhood.
`(2) RESEARCH- The Secretary may carry out activities to expand research
relating to--
`(A) encouraging preconception counseling, especially for at risk
populations such as diabetics;
`(B) the identification of critical components of prenatal delivery
and postpartum care;
`(C) the identification of outreach and support services, such as
folic acid education, that are available for pregnant women;
`(D) the identification of women who are at high risk for
complications;
`(E) preventing preterm delivery;
`(F) preventing urinary tract infections;
`(G) preventing unnecessary caesarean sections;
`(H) an examination of the higher rates of maternal mortality among
African American women;
`(I) an examination of the relationship between domestic violence and
maternal complications and mortality;
`(J) preventing and reducing adverse health consequences that may
result from smoking, alcohol and illegal drug use before, during and after
pregnancy;
`(K) preventing infections that cause maternal and infant
complications; and
`(L) other areas determined appropriate by the Secretary.
`(c) PREVENTION PROGRAMS-
`(1) IN GENERAL- The Secretary may carry out activities to promote safe
motherhood, including--
`(A) public education campaigns on healthy pregnancies and the
building of partnerships with outside organizations concerned about safe
motherhood;
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