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H.R.3301
Children's Health Research and Prevention Amendments of 1999
(Introduced in the House)
Subtitle A--Early Detection , Diagnosis, and Treatment
Regarding Hearing Loss in
Infants
SEC. 201. SHORT TITLE.
This subtitle may be cited as the `Newborn and Infant Hearing Screening and Intervention Act of 1999'.
SEC. 202. EARLY DETECTION , DIAGNOSIS, AND INTERVENTIONS
FOR NEWBORNS AND INFANTS WITH HEARING LOSS.
(a) DEFINITIONS- For the purposes of this subtitle only, the following
terms in this section are defined as follows:
(1) HEARING SCREENING-
Newborn and infant hearing
screening consists of objective physiologic procedures to detect possible
hearing loss and to identify
newborns and infants who, after rescreening, require further audiologic and
medical evaluations.
(2) AUDIOLOGIC EVALUATION- Audiologic evaluation consists of 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 IDEA Part C coordinating agencies 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.
(3) MEDICAL EVALUATION- Medical evaluation by a physician consists of
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.
(4) MEDICAL INTERVENTION -
Medical intervention is 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.
(5) AUDIOLOGIC REHABILITATION- Audiologic rehabilitation (intervention ) consists of
procedures, techniques, and technologies to facilitate the receptive and
expressive communication abilities of a child with hearing loss.
(6) EARLY INTERVENTION - Early intervention (e.g., nonmedical)
means providing appropriate services for the child with hearing loss 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.
(b) PURPOSES- The purposes of this subtitle 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.
(c) STATEWIDE NEWBORN AND INFANT HEARING SCREENING, EVALUATION AND
INTERVENTION PROGRAMS AND
SYSTEMS- The Secretary of Health and Human Services (in this subtitle referred
to as 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.
(d) 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.
(e) 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 (c) and to develop a data collection system under
subsection (d).
(f) RULE OF CONSTRUCTION- Nothing in this subtitle shall be construed to
preempt any State law.
(g) AUTHORIZATION OF APPROPRIATIONS-
(1) STATEWIDE NEWBORN AND INFANT HEARING SCREENING, EVALUATION AND
INTERVENTION PROGRAMS AND
SYSTEMS- For the purpose of carrying out subsection (c), there are
authorized to be appropriated to the Health Resources and Services
Administration such sums as may be necessary for each of the fiscal years
2000 through 2003.
(2) TECHNICAL ASSISTANCE, DATA MANAGEMENT, AND APPLIED RESEARCH; CENTERS
FOR DISEASE CONTROL AND PREVENTION- For the purpose of carrying out
subsection (d)(1), there are authorized to be appropriated to the Centers
for Disease Control and Prevention such sums as may be necessary for each of
the fiscal years 2000 through 2003.
(3) TECHNICAL ASSISTANCE, DATA MANAGEMENT, AND APPLIED RESEARCH;
NATIONAL INSTITUTE ON DEAFNESS AND OTHER COMMUNICATION DISORDERS- For the
purpose of carrying out subsection (d)(2), there are authorized to be
appropriated to the National Institute on Deafness and Other Communication
Disorders such sums as may be necessary for each of the fiscal years 2000
through 2003.
Subtitle B--Autism
CHAPTER 1--SURVEILLANCE AND RESEARCH REGARDING PREVALENCE AND PATTERN OF
AUTISM
SEC. 211. SHORT TITLE.
This chapter may be cited as the `Autism Statistics, Surveillance,
Research, and Epidemiology Act of 1999 (ASSURE)'.
SEC. 212. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH
PROGRAMS.
(a) NATIONAL AUTISM AND PERVASIVE DEVELOPMENTAL DISABILITIES SURVEILLANCE
PROGRAM- The Secretary of Health and Human Services (in this chapter referred
to as the `Secretary'), acting through the Director of the Centers for Disease
Control and Prevention, may make awards of grants and cooperative agreements
for the collection, analysis, and reporting of data on autism and pervasive
developmental disabilities. An entity may receive such an award only if the
entity is a public or nonprofit private entity (including health departments
of States and political subdivisions of States, and including universities and
other educational entities). In making
such awards, the Secretary may provide direct technical assistance in lieu of
cash.
(b) CENTERS OF EXCELLENCE IN AUTISM AND PERVASIVE DEVELOPMENTAL
DISABILITIES EPIDEMIOLOGY-
(1) IN GENERAL- The Secretary, acting through the Director of the
Centers for Disease Control and Prevention, shall (subject to the extent of
amounts made available in appropriations Acts) establish not less than
three, and not more than five, regional centers of excellence in autism and
pervasive developmental disabilities epidemiology for the purpose of
collecting and analyzing information on the number, incidence, correlates,
and causes of autism and related developmental disabilities.
(2) RECIPIENTS OF AWARDS FOR ESTABLISHMENT OF CENTERS- Centers under
paragraph (1) shall be established and operated through the award of grants
or cooperative agreements to public or nonprofit private entities that
conduct research, including health departments of States and political
subdivisions of States, and including universities and other educational
entities.
(3) CERTAIN REQUIREMENTS- An award for a center under paragraph (1) may
be made only if the entity involved submits to the Secretary an application
containing such agreements and information as the Secretary may require,
including an agreement that the center involved will operate in accordance
with the following:
(A) The center will collect, analyze, and report autism and pervasive
developmental disabilities data according to guidelines prescribed by the
Director, after consultation with relevant State and local public health
officials, private sector developmental disability researchers, and
advocates for those with developmental disabilities;
(B) The center will assist with the development and coordination of
State autism and pervasive developmental disabilities surveillance efforts
within a region;
(C) The center will provide education, training, and clinical skills
improvement for health professionals aimed at better understanding and
treatment of autism and related developmental disabilities; and
(D) The center will identify eligible cases and controls through its
surveillance systems and conduct research into factors which may cause
autism and related developmental disabilities; each program will develop
or extend an area of special research expertise (including, but not
limited to, genetics, environmental exposure to contaminants, immunology,
and other relevant research specialty areas).
SEC. 213. CLEARINGHOUSE.
The Secretary, acting through the Director of the Centers for Disease
Control and Prevention, shall carry out the following:
(1) The Centers for Disease Control and Prevention shall serve as the
coordinating agency for autism and pervasive developmental disabilities
surveillance activities through the establishment of a clearinghouse for the
collection and storage of data generated from the monitoring programs
created by this chapter. The functions of such a clearinghouse shall include
facilitating the coordination of research and policy development relating to
the epidemiology of autism and other pervasive developmental
disabilities.
(2) The Secretary, acting through the Centers for Disease Control and
Prevention, shall coordinate the Federal response to requests for assistance
from State health department officials regarding potential or alleged autism
or developmental disability clusters.
SEC. 214. ADVISORY COMMITTEE.
(a) IN GENERAL- The Secretary shall establish an Advisory Committee for
Autism and Pervasive Developmental Disabilities Epidemiology Research (in this
section referred to as the `Committee'). The Committee shall provide advice
and recommendations to the Director of the Centers for Disease Control and
Prevention on--
(1) the establishment of a national autism and pervasive developmental
disabilities surveillance program;
(2) the establishment of centers of excellence in autism and pervasive
developmental disabilities epidemiology;
(3) methods and procedures to more effectively coordinate government and
non-government programs and research on autism and pervasive developmental
disabilities epidemiology; and
(4) the effective operation of autism and pervasive developmental
disabilities epidemiology research activities.
(1) IN GENERAL- The Committee shall be composed of ex officio members in
accordance with paragraph (2) and 11 appointed members in accordance with
paragraph (3).
(2) EX OFFICIO MEMBERS- The following officials shall serve as ex
officio members of the Committee:
(A) The Director of the National Center for Environmental
Health.
(B) The Assistant Administrator of the Agency for Toxic Substances and
Disease Registry.
(C) The Director of the National Institute of Child Health and Human
Development.
(D) The Director of the National Institute of Neurological Disorders
and Stroke.
(3) APPOINTED MEMBERS- Appointments to the Committee shall be made in
accordance with the following:
(A) Two members shall be research scientists with demonstrated
achievements in research related to autism and related developmental
disabilities. The scientists shall be appointed by the Secretary in
consultation with the National Academy of Sciences.
(B) Five members shall be representatives of the five national
organizations whose primary
emphasis is on research into autism and other pervasive developmental
disabilities. One representative from each of such organizations shall be
appointed by the Secretary in consultation with the National Academy of
Sciences.
(C) Two members shall be clinicians whose practice is primarily
devoted to the treatment of individuals with autism and other pervasive
developmental disabilities. The clinicians shall be appointed by the
Secretary in consultation with the Institute of Medicine and the National
Academy of Sciences.
(D) Two members shall be individuals who are the parents or legal
guardians of a person or persons with autism or other pervasive
developmental disabilities. The individuals shall be appointed by the
Secretary in consultation with the ex officio members under paragraph (1)
and the five national organizations referred to in subparagraph
(B).
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