1.This Act may be cited as the
Combating Autism Act of
2005
.
2.Activities to
improve autism-related research and fundingTitle IV of the Public Health Service Act
(42 U.S.C. 281 et seq.) is amended by adding at the end the following:
JAutism-related
activities
499A.Authority of
the director of the national institutes of health relating to autism
(a)Identifying
Total Expenditures on Autism Spectrum DisordersThe Director of
NIH, in coordination with the National Institute of Mental Health and other
institutes of the National Institutes of Health, shall identify the total
amount of expenditures, both intramural and extramural, by the National
Institutes of Health for autism spectrum disorders for fiscal year 2005.
(b)Budget for
autism research and coordination of activities and programsThe
Director of NIH, based on the strategic plan developed under subsection (c),
shall—
(1)develop and oversee the
implementation of a scientifically justified budget for research on autism
spectrum disorders at the National Institutes of Health;
(2)coordinate all research activities
and programs on autism spectrum disorders at the institutes, centers, and
divisions of the National Institutes of Health; and
(3)evaluate all such activities and
programs.
(c)Strategic plan
for autism research
(1)The Director of NIH shall develop and oversee the
implementation of a comprehensive, long-range plan for the conduct and support
of research on autism spectrum disorders by the institutes, centers, and
divisions of the National Institutes of Health.
(2)The
plan developed under paragraph (1) shall—
(A)be updated on an annual
basis;
(B)be based on the research
recommendations contained in the Autism Research Roadmap and Matrix of the
Interagency Autism Coordinating Committee;
(C)determine and establish priorities
among critical scientific questions related to autism spectrum
disorders;
(D)based on the priorities established
under subparagraph (C), specify the short and long-range objectives to be
achieved, and estimate the resources needed to achieve these objectives;
(E)evaluate the sufficiency of
existing research programs on autism spectrum disorders to meet the objectives
specified under subparagraph (D), and establish objectives, timelines, and
criteria for evaluating future research programs; and
(F)make recommendations for changes to
existing research programs on autism spectrum disorders.
(d)
(1)The Director of NIH shall—
(A)in accordance with
the strategic plan developed under subsection (c), annually prepare and submit
to Congress a scientifically justified budget estimate for research on autism
spectrum disorders to be conducted within the agencies of the National
Institutes of Health, which shall include the amount of funds that will be
required for—
(i)the continued funding of ongoing
discretionary program initiatives at the institutes, centers, and divisions of
the National Institutes of Health; and
(ii)the funding of new and
complementary program initiatives.
(B)receive all
research funds for autism spectrum disorders described in subparagraph (A), and
allocate those funds to the institutes, centers, and divisions of the National
Institutes of Health.
(2)Paragraph (1)(B) shall become effective in the fiscal year
following the submission of the autism budget described in paragraph
(1)(A).
(e)
(1)The
Director of NIH shall evaluate the effect of this section on the planning and
coordination of research programs on autism spectrum disorders at the
institutes, centers, and divisions of the National Institutes of Health, and
the extent to which funding mandated under this section has followed the
recommendation of the strategic plan developed under subsection (c).
(2)Not later
than 1 year after the date of enactment of this section, the Director of NIH
shall prepare and submit to the Committee on Energy and Commerce and the
Committee on Appropriations of the House of Representatives, and the Committee
on Health, Education, Labor, and Pensions and the Committee on Appropriations
of the Senate, a report based on the evaluation described in paragraph
(1).
499B.Expansion,
intensification, and coordination of activities of national institutes of
health with respect to research on autism
(a)
(1)The Director of NIH shall expand, intensify, and
coordinate the activities of the National Institutes of Health with respect to
research on autism.
(2)Administration of program;
coordination among agenciesThe Director of NIH shall carry out
this section acting through the Director of the National Institute of Mental
Health and in collaboration with the National Institute of Child Health and
Human Development, the National Institute of Neurological Disorders and Stroke,
the National Institute of Environmental Health Sciences, the National Institute
on Deafness and Other Communication Disorders, and any other agencies that the
Director determines appropriate.
(b)
(1)In carrying out subsection (a)(1), the Director of NIH
shall award grants and contracts to public or nonprofit private entities to pay
all or part of the cost of planning, establishing, improving, and providing
basic operating support for centers of excellence regarding research on
autism.
(2)Each
center of excellence that receives funding under paragraph (1) shall conduct
basic and clinical research into autism. Such research—
(A)shall be conducted
in the fields of developmental neurobiology, genetics, and psychopharmacology,
and, beginning on July 1, 2008, immunology, endocrinology, gastroenterology,
and toxicology; and
(B)should
include—
(i)investigations into the cause,
diagnosis, early detection, prevention, control, treatment, and cure of autism;
and
(ii)research on high-risk infant
siblings.
(3)
(A)A center
of excellence that receives funding under paragraph (1) may expend amounts
provided under a grant or contract under such paragraph to carry out a program
to make individuals aware of opportunities to participate as subjects in
research conducted by the centers.
(B)A program carried out under subparagraph (A) may, in
accordance with such criteria as the Director of NIH may establish, provide to
the subjects described in such subparagraph, referrals for health and other
services, and such patient care costs as are required for research.
(C)The extent to which a center of excellence that receives
funding under paragraph (1) can demonstrate availability and access to clinical
services shall be considered by the Director of NIH in decisions about awarding
grants or contracts to applicants that meet the scientific criteria for funding
under this section.
(4)Coordination of
centers of excellence
(A)The
Director of NIH shall, as appropriate, provide for the coordination of
information among centers of excellence that receive funding under paragraph
(1) and centers of excellence that receive funding under section 463C, and
ensure regular communication between such centers.
(B)The Director of NIH may require the periodic preparation
of reports on the activities of the centers described in subparagraph (A) and
the submission of such reports to the Director.
(C)Collection and storage of
dataThe Director of NIH shall establish and fund mechanisms and
entities for collecting, storing, and coordinating data collected by the
centers referred to in subparagraph (A) and data generated from public and
private research partnerships.
(5)Each
center of excellence that receives funding under paragraph (1) shall use the
facilities of a single institution, or be formed from a consortium of
cooperating institutions, meeting such requirements as may be prescribed by the
Director of NIH.
(6)
(A)The Director shall provide for the establishment of not
less than 10 centers under paragraph (1).
(B)A
grant or contract awarded under paragraph (1) shall not exceed a period of 5
years. Such period may be extended for 1 or more additional periods not
exceeding 5 years if the operations of the center of excellence involved have
been reviewed by an appropriate technical and scientific peer review group
established by the Director of NIH and the group has recommended to the
Director that such period should be extended.
(C)
(i)The Director of NIH shall establish a program under which
samples of tissues and genetic and other biological materials that are of use
in research on autism are donated, collected, preserved, and made available for
such research.
(ii)Accepted scientific
standardsThe program established under clause (i) shall be
carried out in accordance with accepted scientific and medical standards for
the donation, collection, and preservation of such samples, and shall be
conducted so that the tissues and other materials saved, as well as any
database compiled from such tissues and materials, are available to researchers
at a reasonable cost.
(D)In carrying out this section, the Director of NIH shall
provide for a means through which the public can obtain information on the
existing and planned programs and activities of the National Institutes of
Health with respect to autism and through which the Director can receive
comments from the public regarding such programs and activities.
(c)Authorization of
appropriationsThere is authorized to be appropriated to carry
out this section, $30,000,000 for each of fiscal years 2007 through 2011.
Amounts appropriated under this subsection shall be in addition to any other
amounts appropriated for such purpose.
499C.Collaborative
programs of excellence in autism
(a)The Director of NIH, acting through the Director of the
National Institute of Child Health and Human Development and the Director of
the National Institute on Deafness and Other Disorders, shall award grants and
contracts to public or nonprofit private entities to pay all or part of the
cost of planning, establishing, improving, and providing basic operating
support for the Collaborative Programs of Excellence in Autism.
(b)Each
program established under subsection (a) shall conduct basic and clinical
research into autism. Such program—
(1)shall conduct
research in the fields of developmental neurobiology, genetics, and
psychopharmacology, and, beginning July 1, 2008, in the fields of immunology,
endocrinology, gastroenterology, and toxicology; and
(2)should
conduct—
(A)investigations into the cause,
diagnosis, early detection, prevention, control, treatment, and cure of autism;
and
(B)research on high-risk infant
siblings.
(c)
(1)The
Director of NIH shall, as appropriate, provide for the coordination of
information among programs established under subsection (a), and centers of
excellence that receive funding under section 463C and 499B, and ensure regular
communication between such centers.
(2)The Director of NIH may require the periodic preparation
of reports on the activities of the programs described in paragraph (1) and the
submission of such reports to the Director.
(3)Collection and storage of
dataThe Director of NIH shall establish and fund mechanisms and
entities for collecting, storing, and coordinating data collected by the
programs referred to in paragraph (1) and data generated from public and
private research partnerships.
(d)Each
program that receives funding under subsection (a) shall use the facilities of
a single institution, or be formed from a consortium of cooperating
institutions, meeting such requirements as may be prescribed by the Director of
NIH.
(e)
(1)The
Director shall provide for the establishment of not less than 10 programs under
paragraph (1).
(2)A grant or
contract awarded under subsection (a) shall not exceed a period of 5 years.
Such period may be extended for 1 or more additional periods not exceeding 5
years if the operations of the program involved have been reviewed by an
appropriate technical and scientific peer review group established by the
Director of NIH and the group has recommended to the Director that such period
should be extended.
(f)Authorization of
appropriationsThere is authorized to be appropriated to carry
out this section, $14,000,000 for each of fiscal years 2007 through 2011.
Amounts appropriated under this subsection shall be in addition to any other
amounts appropriated for such
purpose.
.
3.Developmental
disabilities surveillance and research programTitle III of the Public Health Service Act
(42 U.S.C. 241 et seq.) is amended by adding at the end thereof the
following:
RPrograms relating
to autism
399AA.Developmental
disabilities surveillance and research program
(a)National autism
and pervasive developmental disabilities surveillance program
(1)The
Secretary, acting through the Director of the Centers for Disease Control and
Prevention, may award grants and cooperative agreements to eligible entities
for the collection, analysis, and reporting of epidemiological data on autism
and pervasive developmental disabilities. In making such awards, the Secretary
may provide direct technical assistance in lieu of cash.
(2)To be
eligible to receive a grant or cooperative agreement under paragraph (1), an
entity shall be a public or nonprofit private entity (including a health
department of a State or political subdivisions of a State, a university, or
any other educational institution), and submit to the Secretary an application
at such time, in such manner, and containing such information as the Secretary
may require.
(b)Centers of
excellence in autism and pervasive developmental disabilities
epidemiology
(1)The Secretary, acting through the Director of the Centers
for Disease Control and Prevention, shall establish not less than 6 regional
centers of excellence in autism and pervasive developmental disabilities
epidemiology for the purpose of collecting and analyzing information on the
number, incidence, incidence trend over time, correlates, and causes of autism
and related developmental disabilities.
(2)Each center of excellence under paragraph (1) shall be
established and operated through the awarding 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 universities and other educational entities.
(3)To
be eligible to receive a grant or cooperative agreement under paragraph (2), an
entity shall submit to the Secretary an application containing such agreements
and information as the Secretary may require, including an agreement that the
center to be established shall 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 of the Centers for Disease Control and
Prevention, 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 identify eligible
cases and controls through its surveillance systems and conduct research into
factors which may cause or increase the risk of autism and related
developmental disabilities.
(D)The center will develop or extend
an area of special research expertise (including genetics, environmental
exposure to contaminants, immunology, and other relevant research specialty
areas).
(c)The
Secretary, acting through the Director of the Centers for Disease Control and
Prevention, shall carry out the following:
(1)The
Secretary shall establish a clearinghouse within the Centers for Disease
Control and Prevention for the collection and storage of data generated from
the monitoring programs established under this part and part J of title IV.
Through the clearinghouse, such Centers shall serve as the coordinating agency
for autism and pervasive developmental disabilities surveillance activities.
The functions of such 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 shall coordinate the Federal response to
requests for assistance from State health department officials regarding
potential or alleged autism or developmental disability clusters.
(3)The Secretary shall provide for the establishment of a
program under which samples of tissues and genetic and other biological
materials that are of use in research on autism are donated, collected,
preserved, and made available for such research. Such program shall be carried
out in accordance with accepted scientific and medical standards for the
donation, collection, and preservation of such samples, and shall be conducted
so that the tissues and other materials saved, as well as any database compiled
from such tissues and materials, are available to researchers at a reasonable
cost.
(4)The
Centers for Disease Control and Prevention shall coordinate research and
surveillance activities of such Centers with the National Institutes of Health,
other appropriate Federal agencies, and interested nonprofit private entities,
in a manner consistent with the research recommendations contained in the
Autism Research Roadmap and Matrix of the Interagency Autism Coordinating
Committee, which shall be updated as determined appropriate by the
Secretary.
(d)In
this part, the term State means each of the several States, the
District of Columbia, the Commonwealth of Puerto Rico, American Samoa, Guam,
the Commonwealth of the Northern Mariana Islands, the Virgin Islands, and the
Trust Territory of the Pacific Islands.
(e)Authorization of
appropriationsThere is authorized to be appropriated to carry
out this section, $12,000,000 for each of fiscal years 2007 through
2011.
399BB.Information
and education relating to autism
(a)The
Secretary shall establish and implement a program to provide information and
education on autism and its risk factors to health professionals and the
general public, including information and education on advances in the
diagnosis and treatment of autism and training and continuing education through
programs for scientists, physicians, and other health professionals who provide
care for patients with autism. The program shall place special emphasis on
early identification of autism and those at risk for autism and prompt referral
for appropriate services.
(b)The
Secretary may use amounts made available under this section to provide stipends
for health professionals who are enrolled in training programs under this
section.
(c)Authorization of
appropriationsThere is authorized to be appropriated to carry
out this section, $10,000,000 for each of fiscal years 2007 through
2011.
399CC.Interagency
autism coordinating committee
(a)The
Secretary shall establish a committee to be known as the Autism
Coordinating Committee
(in this section referred to as the
Committee
) to coordinate all efforts within the Department of
Health and Human Services concerning autism, including activities carried out
through the National Institutes of Health and the Centers for Disease Control
and Prevention under the amendments made by the National Autism Research
Act.
(b)
(1)The Committee shall be composed of—
(A)the Director of the Centers for
Disease Control and Prevention;
(B)the Directors of such national
research institutes of the National Institutes of Health as the Secretary
determines appropriate;
(C)the heads of such other agencies as
the Secretary determines appropriate; and
(D)the additional members appointed
under paragraph (2) (if any).
(2)If determined appropriate by the Secretary, the Secretary
may appoint to the Committee—
(A)individuals with autism or other
pervasive developmental disorders;
(B)parents or legal guardians of
individuals with autism or other pervasive developmental disorders;
(C)representatives of leading autism
research and service organizations; and
(D)representatives of other
governmental agencies that serve children with autism such as the Department of
Education.
(c)Administrative
support; terms of services; other provisionsThe following shall
apply with respect to the Committee:
(1)The Committee shall receive
necessary and appropriate administrative support from the Secretary.
(2)Members of the Committee appointed
under subsection (b)(2)(A) shall serve for a term of 3 years, and may serve for
an unlimited number of terms if reappointed.
(3)The Committee shall meet not less
than 2 times each year.
399DD.Screening,
diagnosis, and treatment of autism; medical care for individuals with
autism
(a)Statewide autism
screening, diagnosis, and intervention programs and systems
(1)The Secretary, acting
through the Administrator of the Health Resources and Services Administration,
shall award grants or cooperative agreements to eligible entities to develop
statewide autism screening, diagnosis, and intervention programs and systems
for the purposes described in paragraph (2).
(2)The
purposes described in this paragraph are the following:
(A)To develop and monitor the efficacy
of statewide autism screening, diagnosis, and intervention programs and
systems, ensuring that all children are screened for autism before their second
birthday, and that children at risk for autism receive appropriate services as
early as possible. 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
needs of children with autism.
(B)To collect data on statewide autism
screening, diagnosis, and intervention programs and systems that can be used
for applied research, program evaluation, and policy development.
(C)To provide comprehensive medical
care for individuals with autism through evidence-based practices, with
specific attention to medical conditions that may be associated with autism,
and to disseminate information on the medical care of individuals with autism
to health professionals and the general public. In carrying out the program
under this paragraph, a grant shall be awarded to a national organization that
will establish and support regional centers of clinical excellence to provide
medical care to individuals with autism and promote research aimed at improving
the treatment of such individuals, and that will build a shared national
medical database to record the results of treatments and studies at the
regional centers.
(3)From amounts appropriated under subsection (e), the
Secretary shall set-aside not less than $4,000,000 for each of fiscal years
2007 through 2011 to carry out activities described in paragraph (2)(C).
(b)Technical
assistance, data management, and applied researchThe Secretary,
acting through the Director of the Centers for Disease Control and Prevention,
shall award grants or cooperative agreements to provide technical assistance to
State agencies to conduct applied research related to autism screening,
diagnosis, and intervention programs and systems. In carrying out this section
the Secretary shall develop standardized procedures for data management and
program effectiveness and costs, including procedures—
(1)to ensure quality monitoring of
autism screening, diagnosis, and intervention programs and systems;
(2)to provide technical assistance on
data collection and management;
(3)to study the costs and
effectiveness of autism screening, diagnosis, and intervention programs and
systems conducted by State-based programs in order to address issues of
importance to State and national policymakers;
(4)to identify the causes and risk
factors for autism;
(5)to study the effectiveness of
autism screening, diagnosis, and intervention programs and systems by assessing
the intellectual and social development, cognitive status, and language skills
of children with autism at school age; and
(6)to promote the sharing of data
regarding autism with State-based birth defects and developmental disabilities
monitoring programs and environmental discharge monitoring programs of the
Environmental Protection Agency for the purpose of identifying previously
unknown causes of and risk factors for autism.
(c)Coordination and
collaboration
(1)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—
(A)other Federal, State and local
agencies, including those responsible for early intervention services pursuant
to title XIX of the Social Security Act (particularly the 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;
(B)consumer groups of, and that serve,
individuals with autism and their families;
(C)appropriate national medical and
other health and education specialty organizations;
(D)individuals with autism and their
families;
(E)other qualified personnel who
possess the specialized knowledge, skills, and attributes needed to serve
autistic children and their families; and
(F)related commercial
industries.
(2)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 autism screening, diagnosis, and intervention programs and
systems.
(3)State early
detection, diagnosis, and intervention programs and systemsThe
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 autism screening, diagnosis, and
intervention programs and systems under subsection (a) and to develop a data
collection system under subsection (b).
(d)Physician
reimbursement for development screeningTo make developmental
screening more readily available, the Secretary, acting through the
Administrator of the Centers for Medicare & Medicaid Services, shall assign
a relative value unit to the diagnostic code for developmental
screening.
(e)Authorization of
appropriationsThere is authorized to be appropriated—
(1)to carry out subsection (a),
$75,000,000 for each of fiscal years 2007 through 2011; and
(2)to carry out subsection (b),
$25,000,000 for each of fiscal years 2007 through 2011.
399EE.
(a)Not later than January 1, 2006, and each January 1
thereafter, the Secretary shall prepare and submit to the appropriate
committees of Congress, a report concerning the implementation of this part and
part J of title IV.
(b)The
report, utilizing uniform reporting methods and procedures, shall—
(1)provide the dollar amount that each
institute of the National Institutes of Health expended on autism research in
the year for which the report was prepared; and
(2)detail the progress and success of
the National Institutes of Health in implementing and funding the
recommendations contained in the Autism Research Roadmap and Matrix of the
Interagency Autism Coordinating
Committee.
.
4.Environmental
health research programsSubpart 12 of part C of title IV of the
Public Health Service Act (42 U.S.C. 285l et seq.) is amended by adding at the
end the following:
463C.Environmental
health research programs
(a)The Director of NIH, acting through the Director of
the Institute, shall awards grants and contracts to public or nonprofit private
entities to pay all or part of the cost of planning, establishing, improving,
and providing basic operating support for centers of excellence regarding
environmental health and autism.
(b)Each
center of excellence under subsection (a) shall conduct basic and clinical
research into possible environmental causes of and risk factors for autism and
the mechanisms by which they may lead to autism, and the developmental effects
of environmental agents that may be associated with autism.
(c)The Director of NIH shall, as appropriate, provide for
the coordination of information among centers of excellence established under
subsection (a) and section 499B and ensure regular communication between such
centers. The Director may require the periodic preparation of reports on the
activities of the centers and the submission of such reports to the Director.
The Director shall establish and fund mechanisms and entities for collecting,
storing, and coordinating data collected by the centers established under this
section and data generated from public and private research
partnerships.
(d)Each
center of excellence under subsection (a) shall use the facilities of a single
institution, or be formed from a consortium of cooperating institutions,
meeting such requirements as may be prescribed by the Director of NIH.
(e)Number of
centers; duration
(1)The Director shall provide for the establishment of not
less than 3 centers under subsection (a).
(A)A grant or
contract awarded under subsection (a) shall not exceed a period of 5 years.
Such period may be extended for 1 or more additional periods not exceeding 5
years if the operations of the center of excellence involved have been reviewed
by an appropriate technical and scientific peer review group established by the
Director of NIH and the group has recommended to the Director that such period
should be extended.
(f)Authorization of
appropriationsThere is authorized to be appropriated to carry
out this section, $6,000,000 for each of fiscal years 2007 through
2011.
.
1.This Act may be cited as the
Combating Autism Act of
2006
.
2.Activities to improve
autism-related researchSection 409C of the Public Health Service
Act (42 U.S.C. 284g) is amended to read as follows:
409C.Authority of
the Director of the National Institutes of Health relating to autism
(a)Strategic plan for
autism research
(1)The Secretary, acting through the Director, shall develop
and implement a strategic plan for the conduct and support of research related
to autism spectrum disorder.
(2)The
strategic plan developed under paragraph (1)—
(A)shall—
(i)be
updated annually;
(ii)take into account the research
recommendations of the Interagency Autism Coordinating Committee under section
399CC; and
(iii)using professional judgment,
outline the proposed budgetary requirements of the strategic plan, including
specific funding expectations for continued multi-year program activities, as
well as new and complementary program activities, subject to the availability
of appropriations; and
(B)may include
investigator-initiated research.
(3)Not
later than April 1, 2008, and annually thereafter, the Secretary, acting
through the Director, shall prepare and submit to the appropriate committees of
Congress a report that contains—
(A)the
strategic plan under paragraph (1) that will be applicable to the upcoming
fiscal year; and
(B)a
description of the actual dollar expenditures for autism spectrum disorder
during the previous fiscal year.
(b)Expansion,
Intensification, and coordination of activitiesThe Secretary,
acting through the Director, shall, subject to the availability of
appropriations, expand, intensify, and coordinate the activities of the
National Institutes of Health with respect to autism spectrum disorder.
(c)
(1)Autism centers of
excellence
(A)The Secretary, acting through the Director, shall,
subject to the availability of appropriations, award grants or contracts to
public or nonprofit private entities to assist such entities in paying all or
part of the costs of planning, establishing, improving, and providing basic
operating support for centers of excellence concerning research on autism
spectrum disorder.
(B)A center of excellence that receives funding under
this paragraph shall conduct basic and clinical research into autism spectrum
disorder. Such research shall—
(i)be
conducted in the fields of developmental neurobiology, genetics, epigenetics,
pharmacology, nutrition, immunology, neuroimmunology, neurobehavioral
development, endocrinology, gastroenterology, psychopharmacology, or
toxicology; and
(ii)include investigations into the
causation, diagnosis or rule out, early detection, prevention, services,
supports, or intervention of autism spectrum disorder.
(C)
(i)A center
of excellence that receives funding under this paragraph may expend amounts
provided under a grant or contract under such paragraph to carry out a program
to make individuals aware of opportunities to participate as subjects in
research conducted by the center.
(ii)A program carried out under clause (i) may, in accordance
with such criteria as the Director may establish, provide to the subjects
described in such clause, referrals for health and other services and
reimbursement of care for individuals as are required for such research.
(iii)The extent to which a center of excellence that receives
funding under this paragraph can demonstrate the availability of and access to
clinical services shall be considered by the Director in making decisions
concerning the awarding of grants or contracts to applicants that meet the
scientific criteria for funding under this section.
(D)Coordination of centers
of excellenceThe Director shall provide for the appropriate
coordination of information among centers of excellence that receive funding
under this paragraph and ensure regular communication between such
centers.
(E)A
center of excellence that receives funding under this paragraph shall use the
facilities of a single institution, or be formed through a consortium of
cooperating institutions, that meets such requirements as may be required by
the Director.
(F)The
term of a grant or contract awarded under this paragraph shall not exceed a
period of 5 years. Such period may be extended for 1 or more additional periods
not exceeding 5 years if the operations of the center of excellence involved
have been reviewed by an appropriate technical and scientific peer review group
established by the Director and the group has recommended to the Director the
extension of such period.
(G)The Director shall consider geographic diversity in
awarding centers of excellence.
(2)Centers of excellence
in environmental health and autism
(A)The
Director shall, subject to the availability of appropriations, award grants or
contracts to public or nonprofit private entities to pay all or part of the
cost of planning, establishing, improving, and providing basic operating
support for centers of excellence regarding environmental health and autism
spectrum disorder.
(B)A center
of excellence established under this paragraph shall conduct basic and clinical
research of a broad array of environmental factors that may have a possible
role in autism spectrum disorder.
(C)Coordination and
organizationThe Secretary, acting through the Director of NIH,
shall apply to the centers under this paragraph the same requirements
concerning coordination, reporting, and organization as the requirements
applied to the centers of excellence under subparagraphs (D), (E), (F), and (G)
of paragraph (1).
(d)Collection and storage
of data
(1)The Secretary, acting through the Director and in
coordination with the Director of the Centers for Disease Control and
Prevention, shall, subject to the availability of appropriations, establish and
provide funding for mechanisms and entities that provide for the collection,
storage, coordination, and public availability of data that is collected by the
centers of excellence under this section, under section 399AA(b), and under
section 409C(c) and, to the extent possible, data generated from public and
private research partnerships. In establishing such mechanisms and entities,
the Secretary—
(A)shall ensure that there is data
sharing among autism spectrum disorder researchers; and
(B)may
utilize existing facilities.
(2)
(A)The Secretary shall establish a program under which
samples of tissues and genetic and other biological materials that are of use
in research on autism spectrum disorder are donated, collected, preserved, and
made available for such research.
(B)Accepted scientific
standardsThe program established under paragraph (1) shall
be—
(i)carried out in accordance with
accepted scientific and medical standards for the donation, collection, and
preservation of such samples; and
(ii)conducted so that the tissues and
other materials saved, as well as any database compiled from such tissues and
materials, are available to researchers at a reasonable cost and on an
expedited basis.
(e)The
Secretary, acting through the Director, may consolidate program activities
under this section if such consolidation would improve program efficiencies and
outcomes.
(f)Authorization of
appropriations
(1)There is authorized to be appropriated—
(A)$68,000,000 for fiscal year 2007,
$82,000,000 for fiscal year 2008, $96,000,000 for fiscal year 2009,
$120,000,000 for fiscal year 2010, and $134,000,000 for fiscal year 2011, to
carry out subsections (a), (b), and (d);
(B)$26,000,000 for fiscal year 2007,
$32,500,000 for fiscal year 2008, $39,000,000 for fiscal year 2009, $45,500,000
for fiscal year 2010, and $52,000,000 for fiscal year 2011, to carry out
subsection (c)(1); and
(C)$6,000,000 for fiscal year 2007,
$7,500,000 for fiscal year 2008, $9,000,000 for fiscal year 2009, $10,500,000
for fiscal year 2010, and $12,000,000 for fiscal year 2011, to carry out
subsection (c)(2).
(2)Of the amounts appropriated under subparagraphs (B) and (C)
of paragraph (1), not to exceed 5 percent of such amounts may be utilized by
the National Institutes of Health for administrative and other expenses.
(g)This
section shall not apply after September 30,
2011.
.
3.Developmental
disabilities surveillance and research program
(a)Title
III of the Public Health Service Act (42 U.S.C. 241 et seq.) is amended by
adding at the end the following:
RPrograms relating
to autism
399AA.Developmental
disabilities surveillance and research program
(a)Autism spectrum
disorder and other developmental disabilities
(1)The
Secretary, acting through the Director of the Centers for Disease Control and
Prevention, may award grants or cooperative agreements to eligible entities for
the collection, analysis, and reporting of State epidemiological data on autism
spectrum disorder and other developmental disabilities. An eligible entity
shall assist with the development and coordination of State autism spectrum
disorder and other developmental disability surveillance efforts within a
region. In making such awards, the Secretary may provide direct technical
assistance in lieu of cash.
(2)In
submitting epidemiological data to the Secretary pursuant to subsection (a), an
eligible entity shall report data according to guidelines prescribed by the
Director of the Centers for Disease Control and Prevention, after consultation
with relevant State and local public health officials, private sector
developmental disability researchers, and advocates for individuals with autism
spectrum disorder or other developmental disabilities.
(3)To be
eligible to receive an award under paragraph (1), an entity shall be a public
or nonprofit private entity (including a health department of a State or a
political subdivision of a State, a university, or any other educational
institution), and submit to the Secretary an application at such time, in such
manner, and containing such information as the Secretary may require.
(b)Centers of excellence
in autism spectrum disorder epidemiology
(1)The Secretary, acting through the Director of the Centers
for Disease Control and Prevention, shall, subject to the availability of
appropriations, award grants or cooperative agreements for the establishment of
regional centers of excellence in autism spectrum disorder and other
developmental disabilities epidemiology for the purpose of collecting and
analyzing information on the number, incidence, correlates and causes of autism
spectrum disorder and other developmental disabilities.
(2)To
be eligible to receive a grant or cooperative agreement under paragraph (1), an
entity shall submit to the Secretary an application containing such agreements
and information as the Secretary may require, including an agreement that the
center to be established under the grant or cooperative agreement shall operate
in accordance with the following:
(A)The
center will collect, analyze, and report autism spectrum disorder and other
developmental disability data according to guidelines prescribed by the
Director of the Centers for Disease Control and Prevention, after consultation
with relevant State and local public health officials, private sector
developmental disability researchers, and advocates for individuals with
developmental disabilities.
(B)The
center will develop or extend an area of special research expertise (including
genetics, epigenetics, epidemiological research related to environmental
exposures), immunology, and other relevant research specialty areas.
(C)The
center will identify eligible cases and controls through its surveillance
system and conduct research into factors which may cause or increase the risk
of autism spectrum disorder and other developmental disabilities.
(c)The Secretary shall coordinate the Federal response to
requests for assistance from State health, mental health, and education
department officials regarding potential or alleged autism spectrum disorder or
developmental disability clusters.
(d)In
this part:
(1)Other developmental
disabilitiesThe term other developmental
disabilities
has the meaning given the term developmental
disability
in section 102(8) of the Developmental Disabilities
Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15002(8)).
(2)The term
State
means each of the several States, the District of
Columbia, the Commonwealth of Puerto Rico, American Samoa, Guam, the
Commonwealth of the Northern Mariana Islands, the Virgin Islands, and the Trust
Territory of the Pacific Islands.
(e)Authorization of
appropriationsTo carry out this section, there is authorized to
be appropriated, $15,000,000 for fiscal year 2007, and such sums as may be
necessary for each of fiscal years 2008 through 2011.
(f)This
section shall not apply after September 30, 2011.
399BB.Autism education,
early detection, and intervention
(a)It
is the purpose of this section—
(1)to
increase awareness, reduce barriers to screening and diagnosis, promote
evidence-based interventions for individuals with autism spectrum disorder or
other developmental disabilities, and train professionals to utilize valid and
reliable screening tools to diagnose or rule out and provide evidence-based
interventions for children with autism spectrum disorder and other
developmental disabilities; and
(2)to
conduct activities under this section with a focus on an interdisciplinary
approach (as defined in programs developed under section 501(a)(2) of the
Social Security Act) that will also focus on specific issues for children who
are not receiving an early diagnosis and subsequent interventions.
(b)The Secretary shall, subject to the availability of
appropriations, establish and evaluate activities to—
(1)provide information and education
on autism spectrum disorder and other developmental disabilities to increase
public awareness of developmental milestones;
(2)promote research into the
development and validation of reliable screening tools for autism spectrum
disorder and other developmental disabilities and disseminate information
regarding those screening tools;
(3)promote early screening of
individuals at higher risk for autism spectrum disorder and other developmental
disabilities as early as practicable, given evidence-based screening techniques
and interventions;
(4)increase the number of individuals
who are able to confirm or rule out a diagnosis of autism spectrum disorder and
other developmental disabilities;
(5)increase the number of individuals
able to provide evidence-based interventions for individuals diagnosed with
autism spectrum disorder or other developmental disabilities; and
(6)promote the use of evidence-based
interventions for individuals at higher risk for autism spectrum disorder and
other developmental disabilities as early as practicable.
(c)Information and
education
(1)In carrying out subsection (b)(1), the Secretary, in
collaboration with the Secretary of Education and the Secretary of Agriculture,
shall, subject to the availability of appropriations, provide culturally
competent information regarding autism spectrum disorder and other
developmental disabilities, risk factors, characteristics, identification,
diagnosis or rule out, and evidence-based interventions to meet the needs of
individuals with autism spectrum disorder or other developmental disabilities
and their families through—
(A)Federal programs,
including—
(i)the
Head Start program;
(ii)the Early Start program;
(iii)the Healthy Start program;
(iv)programs under the Child Care and
Development Block Grant Act of 1990;
(v)programs under title XIX of the
Social Security Act (particularly the Medicaid Early and Periodic Screening,
Diagnosis and Treatment Program);
(vi)the program under title XXI of the
Social Security Act (the State Children's Health Insurance Program);
(vii)the program under title V of the
Social Security Act (Maternal and Child Health Block Grant Program);
(viii)the program under parts B and C
of the Individuals with Disabilities Education Act;
(ix)the special supplemental nutrition
program for women, infants, and children established under section 17 of the
Child Nutrition Act of 1966 (42 U.S.C. 1786); and
(x)the
State grant program under the Rehabilitation Act of 1973.
(B)State licensed child care
facilities; and
(C)other community-based
organizations or points of entry for individuals with autism spectrum disorder
and other developmental disabilities to receive services.
(2)
(A)The
governor of a State shall designate a public agency as a lead agency to
coordinate the activities provided for under paragraph (1) in the State at the
State level.
(B)The
Governor or a State, acting through the lead agency under subparagraph (A),
shall make available to individuals and their family members, guardians,
advocates, or authorized representatives, providers, and other appropriate
individuals in the State, comprehensive culturally competent information about
State and local resources regarding autism spectrum disorder and other
developmental disabilities, risk factors, characteristics, identification,
diagnosis or rule out, available services and supports, and evidence-based
interventions. Such information shall be provided through—
(i)toll-free telephone numbers;
(ii)Internet websites;
(iii)mailings; or
(iv)other means as the Governor may
require.
(C)In designating the lead agency under subparagraph (A), the
Governor shall—
(i)select an agency that has
demonstrated experience and expertise in—
(I)autism spectrum disorder and other
developmental disability issues; and
(II)developing, implementing,
conducting, and administering programs and delivering education, information,
and referral services (including technology-based curriculum-development
services) to individuals with developmental disabilities and their family
members, guardians, advocates or authorized representatives, providers, and
other appropriate individuals locally and across the State; and
(ii)consider input from
individuals with developmental disabilities and their family members,
guardians, advocates or authorized representatives, providers, and other
appropriate individuals.
(d)
(1)To promote the use of valid and reliable screening tools
for autism spectrum disorder and other developmental disabilities, the
Secretary shall develop a curriculum for continuing education to assist
individuals in recognizing the need for valid and reliable screening tools and
the use of such tools.
(2)Collection, storage,
coordination, and availabilityThe Secretary, in collaboration
with the Secretary of Education, shall provide for the collection, storage,
coordination, and public availability of tools described in paragraph (1),
educational materials and other products that are used by the Federal programs
referred to in subsection (c)(1)(A), as well as—
(A)programs authorized under the
Developmental Disabilities Assistance and Bill of Rights Act of 2000;
(B)early intervention programs or
interagency coordinating council’s authorized under part C of the Individuals
with Disabilities Education Act; and
(C)children with special health care
needs programs authorized under title V of the Social Security Act.
(3)In establishing mechanisms and entities under this
subsection, the Secretary, and the Secretary of Education, shall ensure the
sharing of tools, materials, and products developed under this subsection among
entities receiving funding under this section.
(e)
(1)The
Secretary, in coordination with activities conducted under title V of the
Social Security Act, shall, subject to the availability of appropriations,
expand existing interdisciplinary training opportunities or opportunities to
increase the number of sites able to diagnose or rule out individuals with
autism spectrum disorder or other developmental disabilities and ensure
that—
(A)competitive grants or
cooperative agreements are awarded to public or non-profit agencies, including
institutions of higher education, to expanding existing or develop new maternal
and child health interdisciplinary leadership education in neurodevelopmental
and related disabilities programs (similar to the programs developed under
section 501(a)(2) of the Social Security Act) in States that do not have such a
program;
(B)trainees under such
training programs—
(i)receive an appropriate balance of
academic, clinical, and community opportunities;
(ii)are culturally competent;
(iii)are ethnically diverse;
(iv)demonstrate a capacity to
evaluate, diagnose or rule out, develop, and provide evidence-based
interventions to individuals with autism spectrum disorder and other
developmental disabilities; and
(v)demonstrate an ability to use a
family-centered approach; and
(C)program sites provide
culturally competent services.
(2)The Secretary may award one or more grants under this
section to provide technical assistance to the network of interdisciplinary
training programs.
(3)The Secretary shall promote research into additional
valid and reliable tools for shortening the time required to confirm or rule
out a diagnosis of autism spectrum disorder or other developmental disabilities
and detecting individuals with autism spectrum disorder or other developmental
disabilities at an earlier age.
(f)The
Secretary shall promote research, through grants or contracts, to determine the
evidence-based practices for interventions for individuals with autism spectrum
disorder or other developmental disabilities, develop guidelines for those
interventions, and disseminate information related to such research and
guidelines.
(g)Authorization of
appropriationsTo carry out this section, there is authorized to
be appropriated, $32,000,000 for fiscal year 2007, $37,000,000 for fiscal year
2008, $42,000,000 for fiscal year 2009, $47,000,000 for fiscal year 2010, and
$52,000,000 for fiscal year 2011, of which—
(1)$5,000,000 shall be made available
in each fiscal year for activities described in subsection (c); and
(2)$3,000,000 shall be made available
in fiscal year 2007, $6,000,000 in fiscal year 2008, $9,000,000 in fiscal year
2009, $12,000,000 in fiscal year 2010, and $15,000,000 in fiscal year 2011, for
activities described in subsection (f).
(h)This
section shall not apply after September 30, 2011.
399CC.Interagency autism
coordinating committee
(a)The
Secretary shall establish a committee, to be known as the Interagency
Autism Coordinating Committee
(in this section referred to as the
Committee
), to coordinate all efforts within the Department of
Health and Human Services concerning autism spectrum disorder.
(b)In
carrying out its duties under this section, the Committee shall—
(1)make recommendations concerning the
strategic plan described in section 409C(a);
(2)develop and annually update
advances in autism spectrum disorder research related to causes, early
screening, diagnosis or rule out, intervention, and access to services and
supports for individuals with autism spectrum disorder; and
(3)make recommendations to the
Secretary regarding the public participation in decisions relating to autism
spectrum disorder.
(c)
(1)The Committee shall be composed of—
(A)the
Director of the Centers for Disease Control and Prevention;
(B)the
Director of the National Institutes of Health, and the Directors of such
national research institutes of the National Institutes of Health as the
Secretary determines appropriate;
(C)the
heads of such other agencies as the Secretary determines appropriate;
(D)representatives of other Federal
Governmental agencies that serve individuals with autism spectrum disorder such
as the Department of Education; and
(E)the
additional members appointed under paragraph (2).
(2)Not fewer than 6 members of the Committee, or 1/3 of the
total membership of the Committee, whichever is greater, shall be composed of
non-federal public members to be appointed by the Secretary, of which—
(A)at
least one such member shall be an individual with a diagnosis of autism
spectrum disorder;
(B)at
least one such member shall be a parent or legal guardian of an individual with
an autism spectrum disorder; and
(C)at
least one such member shall be a representative of leading research, advocacy,
and service organizations for individuals with autism spectrum disorder.
(d)Administrative support;
terms of service; other provisionsThe following provisions shall
apply with respect to the Committee:
(1)The
Committee shall receive necessary and appropriate administrative support from
the Secretary.
(2)Members of the Committee appointed
under subsection (c)(2) shall serve for a term of 4 years, and may be
reappointed for one or more additional 4 year term. Any member appointed to
fill a vacancy for an unexpired term shall be appointed for the remainder of
such term. A member may serve after the expiration of the member's term until a
successor has taken office.
(3)The
Committee shall meet at the call of the chairperson or upon the request of the
Secretary. The Committee shall meet not fewer than 2 times each year.
(4)All meetings of the Committee shall
be public and shall include appropriate time periods for questions and
presentations by the public.
(e)Compensation and
expensesMembers of the Committee who are officers or employees
of the Federal Government shall serve as members of the Committee without
compensation in addition to that received in their regular government
employment. Other members of the Committee shall receive compensation at rates
not to exceed the daily equivalent of the annual rate in effect for grade GS–18
of the General Schedule for each day (including travel time) they are engaged
in the performance of their duties as members of the Committee.
(f)Subcommittees;
establishment and membershipIn carrying out its functions, the
Committee may establish subcommittees and convene workshops and conferences.
Such subcommittees shall be composed of Committee members and may hold such
meetings as are necessary to enable the subcommittees to carry out their
duties.
(g)Authorization of
appropriationsTo carry out this section, there is authorized to
be appropriated, such sums as may be necessary for each of fiscal years 2007
through 2011.
(h)This
section shall not apply after September 30, 2011 and the Committee shall be
terminated on such date.
399DD.
(a)Not later than 4 years after the date of enactment of the
Combating Autism Act of 2006, the Secretary, in coordination with the Secretary
of Education, shall prepare and submit to the Health, Education, Labor, and
Pensions Committee of the Senate and the Energy and Commerce Committee of the
House of Representatives a progress report on activities related to autism
spectrum disorder and other developmental disabilities.
(b)The
report submitted under subsection (a) shall contain—
(1)a
description of the progress made in implementing the provisions of the
Combating Autism Act of
2006;
(2)a
description of the amounts expended on the implementation of the particular
provisions of Combating Autism Act of
2006;
(3)information on the incidence of
autism spectrum disorder and trend data of such incidence since the date of
enactment of the Combating Autism Act of
2006;
(4)information on the average age of
diagnosis for children with autism spectrum disorder and other disabilities,
including how that age may have changed over the 4-year period beginning on the
date of enactment of this Act;
(5)information on the average age for
intervention for individuals diagnosed with autism spectrum disorder and other
developmental disabilities, including how that age may have changed over the
4-year period beginning on the date of enactment of this Act;
(6)information on the average time
between initial screening and then diagnosis or rule out for individuals with
autism spectrum disorder or other developmental disabilities, as well as
information on the average time between diagnosis and evidence-based
intervention for individuals with autism spectrum disorder or other
developmental disabilities;
(7)information on the effectiveness
and outcomes of interventions for individuals diagnosed with autism spectrum
disorder, including by various subtypes, and other developmental disabilities
and how the age of the child may affect such effectiveness;
(8)information on the effectiveness
and outcomes of innovative and newly developed intervention strategies for
individuals with autism spectrum disorder or other developmental disabilities;
and
(9)information on services and
supports provided to individuals with autism spectrum disorder and other
developmental disabilities who have reached the age of majority (as defined for
purposes of section 615(m) of the Individuals with Disabilities Education Act
(20 U.S.C.
1415(m)).
.
(b)The
following sections of the Children's Health Act of 2000 (Public Law 106–310)
are repealed:
(1)Section 101 (42 U.S.C. 247b–4a)
relating to research activities at the National Institutes of Health.
(2)Section 102 (42 U.S.C. 247b–4b)
relating to the Developmental Disabilities Surveillance and Research
Program.
(3)Section 103 (42 U.S.C. 247b–4c)
relating to information and education.
(4)Section 104 (42 U.S.C. 247b–4d)
relating to the Inter-Agency Autism Coordinating Committee.
(5)Section 105 (42 U.S.C. 247b–4e)
relating to reports.
August 3, 2006
Reported with an amendment