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S. 843 (109th): Combating Autism Act of 2006


The text of the bill below is as of Aug 3, 2006 (Reported by Senate Committee).


II

Calendar No. 578

109th CONGRESS

2d Session

S. 843

[Report No. 109–318]

IN THE SENATE OF THE UNITED STATES

April 19, 2005

(for himself, Mr. Dodd, Mr. Corzine, Mr. Lieberman, Mr. Lautenberg, Ms. Cantwell, Mr. Pryor, Mr. Jeffords, Mr. Kerry, Mr. Coleman, Ms. Collins, Mr. Cochran, Mr. Akaka, Mr. Leahy, Mrs. Clinton, Mr. Dayton, Ms. Landrieu, Mr. Johnson, Mr. Isakson, Mr. DeWine, Ms. Mikulski, Mr. Sarbanes, Mr. Inouye, Mr. Biden, Mrs. Boxer, Mr. Schumer, Mr. Menendez, Mr. Hatch, Mr. Domenici, Mr. Bingaman, Mr. Reed, Mrs. Murray, Mr. Sununu, Mr. Vitter, Mr. McCain, Mr. Bennett, Mr. Talent, Mr. Nelson of Florida, Mr. Chafee, Mr. Salazar, Mr. Harkin, Mrs. Hutchison, Mr. Cornyn, Mr. Enzi, Mr. Burr, Mr. Frist, Mr. Durbin, Mr. Chambliss, and Mr. Thune) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions

August 3, 2006

Reported by , with an amendment

Strike out all after the enacting clause and insert the part printed in italic

A BILL

To amend the Public Health Service Act to combat autism through research, screening, intervention and education.

1.

Short title

This Act may be cited as the Combating Autism Act of 2005.

2.

Activities to improve autism-related research and funding

Title IV of the Public Health Service Act (42 U.S.C. 281 et seq.) is amended by adding at the end the following:

J

Autism-related activities

499A.

Authority of the director of the national institutes of health relating to autism

(a)

Identifying Total Expenditures on Autism Spectrum Disorders

The 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 programs

The 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)

In general

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)

Requirements

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)

Budgetary authority

(1)

In general

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)

Effective date

Paragraph (1)(B) shall become effective in the fiscal year following the submission of the autism budget described in paragraph (1)(A).

(e)

Evaluation and report

(1)

Evaluation

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)

Report

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)

In general

(1)

Expansion of activities

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 agencies

The 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)

Centers of excellence

(1)

In general

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)

Research

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)

Services for patients

(A)

In general

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)

Referrals and costs

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)

Availability and access

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)

In general

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)

Periodic reports

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 data

The 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)

Organization

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)

Number and duration

(A)

In general

The Director shall provide for the establishment of not less than 10 centers under paragraph (1).

(B)

Duration

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)

Facilitation of research

(i)

Establishment of program

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 standards

The 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)

Public input

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 appropriations

There 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)

In general

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)

Research

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)

Coordination of programs

(1)

In general

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)

Periodic reports

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 data

The 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)

Organization

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)

Number and duration

(1)

In general

The Director shall provide for the establishment of not less than 10 programs under paragraph (1).

(2)

Duration

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 appropriations

There 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 program

Title III of the Public Health Service Act (42 U.S.C. 241 et seq.) is amended by adding at the end thereof the following:

R

Programs relating to autism

399AA.

Developmental disabilities surveillance and research program

(a)

National autism and pervasive developmental disabilities surveillance program

(1)

In general

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)

Eligibility

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)

In general

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)

Recipients of awards

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)

Requirements

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)

Clearinghouse

The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall carry out the following:

(1)

Establishment

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)

Federal response

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)

Facilitation of research

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)

Coordination

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)

State

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 appropriations

There 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)

In general

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)

Stipends

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 appropriations

There 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)

Establishment

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)

Membership

(1)

In general

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)

Additional members

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 provisions

The 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)

In general

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)

Purposes

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)

Set aside of funds

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 research

The 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 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—

(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)

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 autism screening, diagnosis, and intervention programs and systems.

(3)

State early detection, diagnosis, and intervention programs and systems

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 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 screening

To 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 appropriations

There 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.

Annual report on autism

(a)

In general

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)

Contents

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 programs

Subpart 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)

Centers of excellence

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)

Research

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)

Coordination; reports

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)

Organization

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)

In general

The Director shall provide for the establishment of not less than 3 centers under subsection (a).

(A)

Duration

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 appropriations

There is authorized to be appropriated to carry out this section, $6,000,000 for each of fiscal years 2007 through 2011.

.

1.

Short title

This Act may be cited as the Combating Autism Act of 2006.

2.

Activities to improve autism-related research

Section 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)

In general

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)

Requirements

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)

Report

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 activities

The 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)

Centers of Excellence

(1)

Autism centers of excellence

(A)

In general

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)

Research activities

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)

Services

(i)

In general

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)

Referrals and costs

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)

Availability and access

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 excellence

The 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)

Organization

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)

Duration

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)

Geographic diversity

The Director shall consider geographic diversity in awarding centers of excellence.

(2)

Centers of excellence in environmental health and autism

(A)

In general

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)

Research

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 organization

The 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)

In general

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)

Facilitation of research

(A)

Establishment of program

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 standards

The 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)

Consolidation

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)

In general

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)

General usage

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)

Sunset

This section shall not apply after September 30, 2011.

.

3.

Developmental disabilities surveillance and research program

(a)

In general

Title III of the Public Health Service Act (42 U.S.C. 241 et seq.) is amended by adding at the end the following:

R

Programs relating to autism

399AA.

Developmental disabilities surveillance and research program

(a)

Autism spectrum disorder and other developmental disabilities

(1)

In general

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)

Data standards

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)

Eligibility

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)

In general

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)

Requirements

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)

Federal response

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)

Definitions

In this part:

(1)

Other developmental disabilities

The 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)

State

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 appropriations

To 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)

Sunset

This section shall not apply after September 30, 2011.

399BB.

Autism education, early detection, and intervention

(a)

Purpose

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)

In general

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 general

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)

Lead agency

(A)

Designation

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)

Information

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)

Requirements of agency

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)

Tools

(1)

In general

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 availability

The 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)

Required sharing

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)

Diagnosis

(1)

Training

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)

Technical assistance

The Secretary may award one or more grants under this section to provide technical assistance to the network of interdisciplinary training programs.

(3)

Best practices

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)

Intervention

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 appropriations

To 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)

Sunset

This section shall not apply after September 30, 2011.

399CC.

Interagency autism coordinating committee

(a)

Establishment

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)

Responsibilities

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)

Membership

(1)

In general

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)

Additional members

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 provisions

The 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 expenses

Members 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 membership

In 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 appropriations

To 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)

Sunset

This section shall not apply after September 30, 2011 and the Committee shall be terminated on such date.

399DD.

Report to Congress

(a)

In general

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)

Contents

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)

Repeals

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