II 

109TH CONGRESS 

1ST SESSION S. 843 

To amend the Public Health Service Act to combat autism through research, 

screening, intervention and education. 

IN THE SENATE OF THE UNITED STATES 

APRIL 19, 2005 

Mr. SANTORUM (for himself and Mr. DODD) introduced the following bill; 

which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 

A BILL

To amend the Public Health Service Act to combat autism 

through research, screening, intervention and education.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Combating Autism Act 

5 of 2005’’. 

6 SEC. 2. ACTIVITIES TO IMPROVE AUTISM-RELATED RE7 SEARCH AND FUNDING. 

8 Title IV of the Public Health Service Act (42 U.S.C. 

9 281 et seq.) is amended by adding at the end the fol10 lowing: 
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1 ‘‘PART J—AUTISM-RELATED ACTIVITIES 

2 ‘‘SEC. 499A. AUTHORITY OF THE DIRECTOR OF THE NA3 TIONAL INSTITUTES OF HEALTH RELATING 

4 TO AUTISM. 

5 ‘‘(a) IDENTIFYING TOTAL EXPENDITURES ON AU6 TISM SPECTRUM DISORDERS.—The Director of NIH, in 

7 coordination with the National Institute of Mental Health 

8 and other institutes of the National Institutes of Health, 

9 shall identify the total amount of expenditures, both intra10 mural and extramural, by the National Institutes of 

11 Health for autism spectrum disorders for fiscal year 2005. 

12 ‘‘(b) BUDGET FOR AUTISM RESEARCH AND COORDI13 NATION OF ACTIVITIES AND PROGRAMS.—The Director of 

14 NIH, based on the strategic plan developed under sub15 section (c), shall— 

16 ‘‘(1) develop and oversee the implementation of 

17 a scientifically justified budget for research on au18 tism spectrum disorders at the National Institutes of 

19 Health; 

20 ‘‘(2) coordinate all research activities and pro21 grams on autism spectrum disorders at the insti22 tutes, centers, and divisions of the National Insti23 tutes of Health; and 

24 ‘‘(3) evaluate all such activities and programs. 

25 ‘‘(c) STRATEGIC PLAN FOR AUTISM RESEARCH.— 
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1 ‘‘(1) IN GENERAL.—The Director of NIH shall 

2 develop and oversee the implementation of a com3 prehensive, long-range plan for the conduct and sup4 port of research on autism spectrum disorders by 

5 the institutes, centers, and divisions of the National 

6 Institutes of Health. 

7 ‘‘(2) REQUIREMENTS.—The plan developed 

8 under paragraph (1) shall— 

9 ‘‘(A) be updated on an annual basis; 

10 ‘‘(B) be based on the research rec11 ommendations contained in the Autism Re12 search Roadmap and Matrix of the Interagency 

13 Autism Coordinating Committee; 

14 ‘‘(C) determine and establish priorities 

15 among critical scientific questions related to au16 tism spectrum disorders; 

17 ‘‘(D) based on the priorities established 

18 under subparagraph (C), specify the short and 

19 long-range objectives to be achieved, and esti20 mate the resources needed to achieve these ob21 jectives; 

22 ‘‘(E) evaluate the sufficiency of existing re23 search programs on autism spectrum disorders 

24 to meet the objectives specified under subpara25 graph (D), and establish objectives, timelines, 
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1 and criteria for evaluating future research pro2 grams; and 

3 ‘‘(F) make recommendations for changes 

4 to existing research programs on autism spec5 trum disorders. 

6 ‘‘(d) BUDGETARY AUTHORITY.— 

7 ‘‘(1) IN GENERAL.—The Director of NIH 

8 shall— 

9 ‘‘(A) in accordance with the strategic plan 

10 developed under subsection (c), annually pre11 pare and submit to Congress a scientifically jus12 tified budget estimate for research on autism 

13 spectrum disorders to be conducted within the 

14 agencies of the National Institutes of Health, 

15 which shall include the amount of funds that 

16 will be required for— 

17 ‘‘(i) the continued funding of ongoing 

18 discretionary program initiatives at the in19 stitutes, centers, and divisions of the Na20 tional Institutes of Health; and 

21 ‘‘(ii) the funding of new and com22 plementary program initiatives. 

23 ‘‘(B) receive all research funds for autism 

24 spectrum disorders described in subparagraph 

25 (A), and allocate those funds to the institutes, 
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1 centers, and divisions of the National Institutes 

2 of Health. 

3 ‘‘(2) EFFECTIVE DATE.—Paragraph (1)(B) 

4 shall become effective in the fiscal year following the 

5 submission of the autism budget described in para6 graph (1)(A). 

7 ‘‘(e) EVALUATION AND REPORT.— 

8 ‘‘(1) EVALUATION.—The Director of NIH shall 

9 evaluate the effect of this section on the planning 

10 and coordination of research programs on autism 

11 spectrum disorders at the institutes, centers, and di12 visions of the National Institutes of Health, and the 

13 extent to which funding mandated under this section 

14 has followed the recommendation of the strategic 

15 plan developed under subsection (c). 

16 ‘‘(2) REPORT.—Not later than 1 year after the 

17 date of enactment of this section, the Director of 

18 NIH shall prepare and submit to the Committee on 

19 Energy and Commerce and the Committee on Ap20 propriations of the House of Representatives, and 

21 the Committee on Health, Education, Labor, and 

22 Pensions and the Committee on Appropriations of 

23 the Senate, a report based on the evaluation de24 scribed in paragraph (1). 
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1 ‘‘SEC. 499B. EXPANSION, INTENSIFICATION, AND COORDI2 NATION OF ACTIVITIES OF NATIONAL INSTI3 TUTES OF HEALTH WITH RESPECT TO RE4 SEARCH ON AUTISM. 

5 ‘‘(a) IN GENERAL.— 

6 ‘‘(1) EXPANSION OF ACTIVITIES.—The Director 

7 of NIH shall expand, intensify, and coordinate the 

8 activities of the National Institutes of Health with 

9 respect to research on autism. 

10 ‘‘(2) ADMINISTRATION OF PROGRAM; COORDI11 NATION AMONG AGENCIES.—The Director of NIH 

12 shall carry out this section acting through the Direc13 tor of the National Institute of Mental Health and 

14 in collaboration with the National Institute of Child 

15 Health and Human Development, the National In16 stitute of Neurological Disorders and Stroke, the 

17 National Institute of Environmental Health 

18 Sciences, the National Institute on Deafness and 

19 Other Communication Disorders, and any other 

20 agencies that the Director determines appropriate. 

21 ‘‘(b) CENTERS OF EXCELLENCE.— 

22 ‘‘(1) IN GENERAL.—In carrying out subsection 

23 (a)(1), the Director of NIH shall award grants and 

24 contracts to public or nonprofit private entities to 

25 pay all or part of the cost of planning, establishing, 
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1 improving, and providing basic operating support for 

2 centers of excellence regarding research on autism. 

3 ‘‘(2) RESEARCH.—Each center of excellence 

4 that receives funding under paragraph (1) shall con5 duct basic and clinical research into autism. Such 

6 research— 

7 ‘‘(A) shall be conducted in the fields of de8 velopmental neurobiology, genetics, and 

9 psychopharmacology, and, beginning on July 1, 

10 2008, immunology, endocrinology, gastro11 enterology, and toxicology; and 

12 ‘‘(B) should include— 

13 ‘‘(i) investigations into the cause, di14 agnosis, early detection, prevention, con15 trol, treatment, and cure of autism; and 

16 ‘‘(ii) research on high-risk infant sib17 lings. 

18 ‘‘(3) SERVICES FOR PATIENTS.— 

19 ‘‘(A) IN GENERAL.—A center of excellence 

20 that receives funding under paragraph (1) may 

21 expend amounts provided under a grant or con22 tract under such paragraph to carry out a pro23 gram to make individuals aware of opportuni24 ties to participate as subjects in research con25 ducted by the centers. 
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1 ‘‘(B) REFERRALS AND COSTS.—A program 

2 carried out under subparagraph (A) may, in ac3 cordance with such criteria as the Director of 

4 NIH may establish, provide to the subjects de5 scribed in such subparagraph, referrals for 

6 health and other services, and such patient care 

7 costs as are required for research. 

8 ‘‘(C) AVAILABILITY AND ACCESS.—The ex9 tent to which a center of excellence that re10 ceives funding under paragraph (1) can dem11 onstrate availability and access to clinical serv12 ices shall be considered by the Director of NIH 

13 in decisions about awarding grants or contracts 

14 to applicants that meet the scientific criteria for 

15 funding under this section. 

16 ‘‘(4) COORDINATION OF CENTERS OF EXCEL17 LENCE.— 

18 ‘‘(A) IN GENERAL.—The Director of NIH 

19 shall, as appropriate, provide for the coordina20 tion of information among centers of excellence 

21 that receive funding under paragraph (1) and 

22 centers of excellence that receive funding under 

23 section 463C, and ensure regular communica24 tion between such centers. 
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1 ‘‘(B) PERIODIC REPORTS.—The Director 

2 of NIH may require the periodic preparation of 

3 reports on the activities of the centers described 

4 in subparagraph (A) and the submission of 

5 such reports to the Director. 

6 ‘‘(C) COLLECTION AND STORAGE OF

7 DATA.—The Director of NIH shall establish 

8 and fund mechanisms and entities for col9 lecting, storing, and coordinating data collected 

10 by the centers referred to in subparagraph (A) 

11 and data generated from public and private re12 search partnerships. 

13 ‘‘(5) ORGANIZATION.—Each center of excellence 

14 that receives funding under paragraph (1) shall use 

15 the facilities of a single institution, or be formed 

16 from a consortium of cooperating institutions, meet17 ing such requirements as may be prescribed by the 

18 Director of NIH. 

19 ‘‘(6) NUMBER AND DURATION.— 

20 ‘‘(A) IN GENERAL.—The Director shall 

21 provide for the establishment of not less than 

22 10 centers under paragraph (1). 

23 ‘‘(B) DURATION.—A grant or contract 

24 awarded under paragraph (1) shall not exceed 

25 a period of 5 years. Such period may be ex-
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1 tended for 1 or more additional periods not ex2 ceeding 5 years if the operations of the center 

3 of excellence involved have been reviewed by an 

4 appropriate technical and scientific peer review 

5 group established by the Director of NIH and 

6 the group has recommended to the Director 

7 that such period should be extended. 

8 ‘‘(C) FACILITATION OF RESEARCH.— 

9 ‘‘(i) ESTABLISHMENT OF PROGRAM.—

10 The Director of NIH shall establish a pro11 gram under which samples of tissues and 

12 genetic and other biological materials that 

13 are of use in research on autism are do14 nated, collected, preserved, and made avail15 able for such research. 

16 ‘‘(ii) ACCEPTED SCIENTIFIC STAND17 ARDS.—The program established under 

18 clause (i) shall be carried out in accord19 ance with accepted scientific and medical 

20 standards for the donation, collection, and 

21 preservation of such samples, and shall be 

22 conducted so that the tissues and other 

23 materials saved, as well as any database 

24 compiled from such tissues and materials, 
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1 are available to researchers at a reasonable 

2 cost. 

3 ‘‘(D) PUBLIC INPUT.—In carrying out this 

4 section, the Director of NIH shall provide for a 

5 means through which the public can obtain in6 formation on the existing and planned pro7 grams and activities of the National Institutes 

8 of Health with respect to autism and through 

9 which the Director can receive comments from 

10 the public regarding such programs and activi11 ties. 

12 ‘‘(c) AUTHORIZATION OF APPROPRIATIONS.—There 

13 is authorized to be appropriated to carry out this section, 

14 $30,000,000 for each of fiscal years 2007 through 2011. 

15 Amounts appropriated under this subsection shall be in 

16 addition to any other amounts appropriated for such pur17 pose. 

18 ‘‘SEC. 499C. COLLABORATIVE PROGRAMS OF EXCELLENCE 

19 IN AUTISM. 

20 ‘‘(a) IN GENERAL.—The Director of NIH, acting 

21 through the Director of the National Institute of Child 

22 Health and Human Development and the Director of the 

23 National Institute on Deafness and Other Disorders, shall 

24 award grants and contracts to public or nonprofit private 

25 entities to pay all or part of the cost of planning, estab-
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1 lishing, improving, and providing basic operating support 

2 for the Collaborative Programs of Excellence in Autism. 

3 ‘‘(b) RESEARCH.—Each program established under 

4 subsection (a) shall conduct basic and clinical research 

5 into autism. Such program— 

6 ‘‘(1) shall conduct research in the fields of de7 velopmental neurobiology, genetics, and 

8 psychopharmacology, and, beginning July 1, 2008, 

9 in the fields of immunology, endocrinology, gastro10 enterology, and toxicology; and 

11 ‘‘(2) should conduct— 

12 ‘‘(A) investigations into the cause, diag13 nosis, early detection, prevention, control, treat14 ment, and cure of autism; and 

15 ‘‘(B) research on high-risk infant siblings. 

16 ‘‘(c) COORDINATION OF PROGRAMS.— 

17 ‘‘(1) IN GENERAL.—The Director of NIH shall, 

18 as appropriate, provide for the coordination of infor19 mation among programs established under sub20 section (a), and centers of excellence that receive 

21 funding under section 463C and 499B, and ensure 

22 regular communication between such centers. 

23 ‘‘(2) PERIODIC REPORTS.—The Director of 

24 NIH may require the periodic preparation of reports 

25 on the activities of the programs described in para-
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1 graph (1) and the submission of such reports to the 

2 Director. 

3 ‘‘(3) COLLECTION AND STORAGE OF DATA.—

4 The Director of NIH shall establish and fund mech5 anisms and entities for collecting, storing, and co6 ordinating data collected by the programs referred 

7 to in paragraph (1) and data generated from public 

8 and private research partnerships. 

9 ‘‘(d) ORGANIZATION.—Each program that receives 

10 funding under subsection (a) shall use the facilities of a 

11 single institution, or be formed from a consortium of co12 operating institutions, meeting such requirements as may 

13 be prescribed by the Director of NIH. 

14 ‘‘(e) NUMBER AND DURATION.— 

15 ‘‘(1) IN GENERAL.—The Director shall provide 

16 for the establishment of not less than 10 programs 

17 under paragraph (1). 

18 ‘‘(2) DURATION.—A grant or contract awarded 

19 under subsection (a) shall not exceed a period of 5 

20 years. Such period may be extended for 1 or more 

21 additional periods not exceeding 5 years if the oper22 ations of the program involved have been reviewed 

23 by an appropriate technical and scientific peer re24 view group established by the Director of NIH and 
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1 the group has recommended to the Director that 

2 such period should be extended. 

3 ‘‘(f) AUTHORIZATION OF APPROPRIATIONS.—There 

4 is authorized to be appropriated to carry out this section, 

5 $14,000,000 for each of fiscal years 2007 through 2011. 

6 Amounts appropriated under this subsection shall be in 

7 addition to any other amounts appropriated for such pur8 pose.’’. 

9 SEC. 3. DEVELOPMENTAL DISABILITIES SURVEILLANCE 

10 AND RESEARCH PROGRAM. 

11 Title III of the Public Health Service Act (42 U.S.C. 

12 241 et seq.) is amended by adding at the end thereof the 

13 following: 

14 ‘‘PART R—PROGRAMS RELATING TO AUTISM 

15 ‘‘SEC. 399AA. DEVELOPMENTAL DISABILITIES SURVEIL16 LANCE AND RESEARCH PROGRAM. 

17 ‘‘(a) NATIONAL AUTISM AND PERVASIVE DEVELOP18 MENTAL DISABILITIES SURVEILLANCE PROGRAM.— 

19 ‘‘(1) IN GENERAL.—The Secretary, acting 

20 through the Director of the Centers for Disease 

21 Control and Prevention, may award grants and co22 operative agreements to eligible entities for the col23 lection, analysis, and reporting of epidemiological 

24 data on autism and pervasive developmental disabil-
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1 ities. In making such awards, the Secretary may 

2 provide direct technical assistance in lieu of cash. 

3 ‘‘(2) ELIGIBILITY.—To be eligible to receive a 

4 grant or cooperative agreement under paragraph (1), 

5 an entity shall be a public or nonprofit private entity 

6 (including a health department of a State or political 

7 subdivisions of a State, a university, or any other 

8 educational institution), and submit to the Secretary 

9 an application at such time, in such manner, and 

10 containing such information as the Secretary may 

11 require. 

12 ‘‘(b) CENTERS OF EXCELLENCE IN AUTISM AND

13 PERVASIVE DEVELOPMENTAL DISABILITIES EPIDEMI14 OLOGY.— 

15 ‘‘(1) IN GENERAL.—The Secretary, acting 

16 through the Director of the Centers for Disease 

17 Control and Prevention, shall establish not less than 

18 6 regional centers of excellence in autism and perva19 sive developmental disabilities epidemiology for the 

20 purpose of collecting and analyzing information on 

21 the number, incidence, incidence trend over time, 

22 correlates, and causes of autism and related develop23 mental disabilities. 

24 ‘‘(2) RECIPIENTS OF AWARDS.—Each center of 

25 excellence under paragraph (1) shall be established 
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1 and operated through the awarding of grants or co2 operative agreements to public or nonprofit private 

3 entities that conduct research, including health de4 partments of States and political subdivisions of 

5 States, and universities and other educational enti6 ties. 

7 ‘‘(3) REQUIREMENTS.—To be eligible to receive 

8 a grant or cooperative agreement under paragraph 

9 (2), an entity shall submit to the Secretary an appli10 cation containing such agreements and information 

11 as the Secretary may require, including an agree12 ment that the center to be established shall operate 

13 in accordance with the following: 

14 ‘‘(A) The center will collect, analyze, and 

15 report autism and pervasive developmental dis16 abilities data according to guidelines prescribed 

17 by the Director of the Centers for Disease Con18 trol and Prevention, after consultation with rel19 evant State and local public health officials, pri20 vate sector developmental disability researchers, 

21 and advocates for those with developmental dis22 abilities. 

23 ‘‘(B) The center will assist with the devel24 opment and coordination of State autism and 
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1 pervasive developmental disabilities surveillance 

2 efforts within a region. 

3 ‘‘(C) The center will identify eligible cases 

4 and controls through its surveillance systems 

5 and conduct research into factors which may 

6 cause or increase the risk of autism and related 

7 developmental disabilities. 

8 ‘‘(D) The center will develop or extend an 

9 area of special research expertise (including ge10 netics, environmental exposure to contaminants, 

11 immunology, and other relevant research spe12 cialty areas). 

13 ‘‘(c) CLEARINGHOUSE.—The Secretary, acting 

14 through the Director of the Centers for Disease Control 

15 and Prevention, shall carry out the following: 

16 ‘‘(1) ESTABLISHMENT.—The Secretary shall es17 tablish a clearinghouse within the Centers for Dis18 ease Control and Prevention for the collection and 

19 storage of data generated from the monitoring pro20 grams established under this part and part J of title 

21 IV. Through the clearinghouse, such Centers shall 

22 serve as the coordinating agency for autism and per23 vasive developmental disabilities surveillance activi24 ties. The functions of such clearinghouse shall in25 clude facilitating the coordination of research and 
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1 policy development relating to the epidemiology of 

2 autism and other pervasive developmental disabil3 ities. 

4 ‘‘(2) FEDERAL RESPONSE.—The Secretary shall 

5 coordinate the Federal response to requests for as6 sistance from State health department officials re7 garding potential or alleged autism or developmental 

8 disability clusters. 

9 ‘‘(3) FACILITATION OF RESEARCH.—The Sec10 retary shall provide for the establishment of a pro11 gram under which samples of tissues and genetic 

12 and other biological materials that are of use in re13 search on autism are donated, collected, preserved, 

14 and made available for such research. Such program 

15 shall be carried out in accordance with accepted sci16 entific and medical standards for the donation, col17 lection, and preservation of such samples, and shall 

18 be conducted so that the tissues and other materials 

19 saved, as well as any database compiled from such 

20 tissues and materials, are available to researchers at 

21 a reasonable cost. 

22 ‘‘(4) COORDINATION.—The Centers for Disease 

23 Control and Prevention shall coordinate research 

24 and surveillance activities of such Centers with the 

25 National Institutes of Health, other appropriate 
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1 Federal agencies, and interested nonprofit private 

2 entities, in a manner consistent with the research 

3 recommendations contained in the Autism Research 

4 Roadmap and Matrix of the Interagency Autism Co5 ordinating Committee, which shall be updated as de6 termined appropriate by the Secretary. 

7 ‘‘(d) STATE.—In this part, the term ‘State’ means 

8 each of the several States, the District of Columbia, the 

9 Commonwealth of Puerto Rico, American Samoa, Guam, 

10 the Commonwealth of the Northern Mariana Islands, the 

11 Virgin Islands, and the Trust Territory of the Pacific Is12 lands. 

13 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—There 

14 is authorized to be appropriated to carry out this section, 

15 $12,000,000 for each of fiscal years 2007 through 2011. 

16 ‘‘SEC. 399BB. INFORMATION AND EDUCATION RELATING TO 

17 AUTISM. 

18 ‘‘(a) IN GENERAL.—The Secretary shall establish 

19 and implement a program to provide information and edu20 cation on autism and its risk factors to health profes21 sionals and the general public, including information and 

22 education on advances in the diagnosis and treatment of 

23 autism and training and continuing education through 

24 programs for scientists, physicians, and other health pro25 fessionals who provide care for patients with autism. The 
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1 program shall place special emphasis on early identifica2 tion of autism and those at risk for autism and prompt 

3 referral for appropriate services. 

4 ‘‘(b) STIPENDS.—The Secretary may use amounts 

5 made available under this section to provide stipends for 

6 health professionals who are enrolled in training programs 

7 under this section. 

8 ‘‘(c) AUTHORIZATION OF APPROPRIATIONS.—There 

9 is authorized to be appropriated to carry out this section, 

10 $10,000,000 for each of fiscal years 2007 through 2011. 

11 ‘‘SEC. 399CC. INTERAGENCY AUTISM COORDINATING COM12 MITTEE. 

13 ‘‘(a) ESTABLISHMENT.—The Secretary shall estab14 lish a committee to be known as the ‘Autism Coordinating 

15 Committee’ (in this section referred to as the ‘Committee’) 

16 to coordinate all efforts within the Department of Health 

17 and Human Services concerning autism, including activi18 ties carried out through the National Institutes of Health 

19 and the Centers for Disease Control and Prevention under 

20 the amendments made by the National Autism Research 

21 Act. 

22 ‘‘(b) MEMBERSHIP.— 

23 ‘‘(1) IN GENERAL.—The Committee shall be 

24 composed of — 
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1 ‘‘(A) the Director of the Centers for Dis2 ease Control and Prevention; 

3 ‘‘(B) the Directors of such national re4 search institutes of the National Institutes of 

5 Health as the Secretary determines appropriate; 

6 ‘‘(C) the heads of such other agencies as 

7 the Secretary determines appropriate; and 

8 ‘‘(D) the additional members appointed 

9 under paragraph (2) (if any). 

10 ‘‘(2) ADDITIONAL MEMBERS.—If determined 

11 appropriate by the Secretary, the Secretary may ap12 point to the Committee— 

13 ‘‘(A) individuals with autism or other per14 vasive developmental disorders; 

15 ‘‘(B) parents or legal guardians of individ16 uals with autism or other pervasive develop17 mental disorders; 

18 ‘‘(C) representatives of leading autism re19 search and service organizations; and 

20 ‘‘(D) representatives of other governmental 

21 agencies that serve children with autism such 

22 as the Department of Education. 

23 ‘‘(c) ADMINISTRATIVE SUPPORT; TERMS OF SERV24 ICES; OTHER PROVISIONS.—The following shall apply 

25 with respect to the Committee: 
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1 ‘‘(1) The Committee shall receive necessary and 

2 appropriate administrative support from the Sec3 retary. 

4 ‘‘(2) Members of the Committee appointed 

5 under subsection (b)(2)(A) shall serve for a term of 

6 3 years, and may serve for an unlimited number of 

7 terms if reappointed. 

8 ‘‘(3) The Committee shall meet not less than 2 

9 times each year. 

10 ‘‘SEC. 399DD. SCREENING, DIAGNOSIS, AND TREATMENT OF 

11 AUTISM; MEDICAL CARE FOR INDIVIDUALS 

12 WITH AUTISM. 

13 ‘‘(a) STATEWIDE AUTISM SCREENING, DIAGNOSIS, 

14 AND INTERVENTION PROGRAMS AND SYSTEMS.— 

15 ‘‘(1) IN GENERAL.—The Secretary, acting 

16 through the Administrator of the Health Resources 

17 and Services Administration, shall award grants or 

18 cooperative agreements to eligible entities to develop 

19 statewide autism screening, diagnosis, and interven20 tion programs and systems for the purposes de21 scribed in paragraph (2). 

22 ‘‘(2) PURPOSES.—The purposes described in 

23 this paragraph are the following: 

24 ‘‘(A) To develop and monitor the efficacy 

25 of statewide autism screening, diagnosis, and 
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1 intervention programs and systems, ensuring 

2 that all children are screened for autism before 

3 their second birthday, and that children at risk 

4 for autism receive appropriate services as early 

5 as possible. Intervention includes referral to 

6 schools and agencies, including community, con7 sumer, and parent-based agencies, and organi8 zations and other programs mandated by part 

9 C of the Individuals with Disabilities Education 

10 Act, which offer programs specifically designed 

11 to meet the unique needs of children with au12 tism. 

13 ‘‘(B) To collect data on statewide autism 

14 screening, diagnosis, and intervention programs 

15 and systems that can be used for applied re16 search, program evaluation, and policy develop17 ment. 

18 ‘‘(C) To provide comprehensive medical 

19 care for individuals with autism through evi20 dence-based practices, with specific attention to 

21 medical conditions that may be associated with 

22 autism, and to disseminate information on the 

23 medical care of individuals with autism to 

24 health professionals and the general public. In 

25 carrying out the program under this paragraph, 
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1 a grant shall be awarded to a national organiza2 tion that will establish and support regional 

3 centers of clinical excellence to provide medical 

4 care to individuals with autism and promote re5 search aimed at improving the treatment of 

6 such individuals, and that will build a shared 

7 national medical database to record the results 

8 of treatments and studies at the regional cen9 ters. 

10 ‘‘(3) SET ASIDE OF FUNDS.—From amounts 

11 appropriated under subsection (e), the Secretary 

12 shall set-aside not less than $4,000,000 for each of 

13 fiscal years 2007 through 2011 to carry out activi14 ties described in paragraph (2)(C). 

15 ‘‘(b) TECHNICAL ASSISTANCE, DATA MANAGEMENT, 

16 AND APPLIED RESEARCH.—The Secretary, acting 

17 through the Director of the Centers for Disease Control 

18 and Prevention, shall award grants or cooperative agree19 ments to provide technical assistance to State agencies to 

20 conduct applied research related to autism screening, diag21 nosis, and intervention programs and systems. In carrying 

22 out this section the Secretary shall develop standardized 

23 procedures for data management and program effective24 ness and costs, including procedures— 
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1 ‘‘(1) to ensure quality monitoring of autism 

2 screening, diagnosis, and intervention programs and 

3 systems; 

4 ‘‘(2) to provide technical assistance on data col5 lection and management; 

6 ‘‘(3) to study the costs and effectiveness of au7 tism screening, diagnosis, and intervention programs 

8 and systems conducted by State-based programs in 

9 order to address issues of importance to State and 

10 national policymakers; 

11 ‘‘(4) to identify the causes and risk factors for 

12 autism; 

13 ‘‘(5) to study the effectiveness of autism screen14 ing, diagnosis, and intervention programs and sys15 tems by assessing the intellectual and social develop16 ment, cognitive status, and language skills of chil17 dren with autism at school age; and 

18 ‘‘(6) to promote the sharing of data regarding 

19 autism with State-based birth defects and develop20 mental disabilities monitoring programs and environ21 mental discharge monitoring programs of the Envi22 ronmental Protection Agency for the purpose of 

23 identifying previously unknown causes of and risk 

24 factors for autism. 

25 ‘‘(c) COORDINATION AND COLLABORATION.— 
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1 ‘‘(1) IN GENERAL.—In carrying out programs 

2 under this section, the Administrator of the Health 

3 Resources and Services Administration, the Director 

4 of the Centers for Disease Control and Prevention, 

5 and the Director of the National Institutes of Health 

6 shall collaborate and consult with— 

7 ‘‘(A) other Federal, State and local agen8 cies, including those responsible for early inter9 vention services pursuant to title XIX of the 

10 Social Security Act (particularly the Medicaid 

11 Early and Periodic Screening, Diagnosis and 

12 Treatment Program), title XXI of the Social 

13 Security Act (State Children’s Health Insur14 ance Program), title V of the Social Security 

15 Act (Maternal and Child Health Block Grant 

16 Program), and part C of the Individuals with 

17 Disabilities Education Act; 

18 ‘‘(B) consumer groups of, and that serve, 

19 individuals with autism and their families; 

20 ‘‘(C) appropriate national medical and 

21 other health and education specialty organiza22 tions; 

23 ‘‘(D) individuals with autism and their 

24 families; 
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1 ‘‘(E) other qualified personnel who possess 

2 the specialized knowledge, skills, and attributes 

3 needed to serve autistic children and their fami4 lies; and 

5 ‘‘(F) related commercial industries. 

6 ‘‘(2) POLICY DEVELOPMENT.—The Adminis7 trator of the Health Resources and Services Admin8 istration, the Director of the Centers for Disease 

9 Control and Prevention, and the Director of the Na10 tional Institutes of Health shall coordinate and col11 laborate on recommendations for policy development 

12 at the Federal and State levels and with the private 

13 sector, including consumer, medical, and other 

14 health and education professional-based organiza15 tions, with respect to autism screening, diagnosis, 

16 and intervention programs and systems. 

17 ‘‘(3) STATE EARLY DETECTION, DIAGNOSIS, 

18 AND INTERVENTION PROGRAMS AND SYSTEMS.—The 

19 Administrator of the Health Resources and Services 

20 Administration and the Director of the Centers for 

21 Disease Control and Prevention shall coordinate and 

22 collaborate in assisting States to establish autism 

23 screening, diagnosis, and intervention programs and 

24 systems under subsection (a) and to develop a data 

25 collection system under subsection (b). 
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1 ‘‘(d) PHYSICIAN REIMBURSEMENT FOR DEVELOP2 MENT SCREENING.—To make developmental screening 

3 more readily available, the Secretary, acting through the 

4 Administrator of the Centers for Medicare & Medicaid 

5 Services, shall assign a relative value unit to the diagnostic 

6 code for developmental screening. 

7 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—There 

8 is authorized to be appropriated— 

9 ‘‘(1) to carry out subsection (a), $75,000,000 

10 for each of fiscal years 2007 through 2011; and 

11 ‘‘(2) to carry out subsection (b), $25,000,000 

12 for each of fiscal years 2007 through 2011. 

13 ‘‘SEC. 399EE. ANNUAL REPORT ON AUTISM. 

14 ‘‘(a) IN GENERAL.—Not later than January 1, 2006, 

15 and each January 1 thereafter, the Secretary shall prepare 

16 and submit to the appropriate committees of Congress, a 

17 report concerning the implementation of this part and part 

18 J of title IV. 

19 ‘‘(b) CONTENTS.—The report, utilizing uniform re20 porting methods and procedures, shall— 

21 ‘‘(1) provide the dollar amount that each insti22 tute of the National Institutes of Health expended 

23 on autism research in the year for which the report 

24 was prepared; and 
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1 ‘‘(2) detail the progress and success of the Na2 tional Institutes of Health in implementing and 

3 funding the recommendations contained in the Au4 tism Research Roadmap and Matrix of the Inter5 agency Autism Coordinating Committee.’’. 

6 SEC. 4. ENVIRONMENTAL HEALTH RESEARCH PROGRAMS. 

7 Subpart 12 of part C of title IV of the Public Health 

8 Service Act (42 U.S.C. 285l et seq.) is amended by adding 

9 at the end the following: 

10 ‘‘SEC. 463C. ENVIRONMENTAL HEALTH RESEARCH PRO11 GRAMS. 

12 ‘‘(a) CENTERS OF EXCELLENCE.—The Director of 

13 NIH, acting through the Director of the Institute, shall 

14 awards grants and contracts to public or nonprofit private 

15 entities to pay all or part of the cost of planning, estab16 lishing, improving, and providing basic operating support 

17 for centers of excellence regarding environmental health 

18 and autism. 

19 ‘‘(b) RESEARCH.—Each center of excellence under 

20 subsection (a) shall conduct basic and clinical research 

21 into possible environmental causes of and risk factors for 

22 autism and the mechanisms by which they may lead to 

23 autism, and the developmental effects of environmental 

24 agents that may be associated with autism. 
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1 ‘‘(c) COORDINATION; REPORTS.—The Director of 

2 NIH shall, as appropriate, provide for the coordination of 

3 information among centers of excellence established under 

4 subsection (a) and section 499B and ensure regular com5 munication between such centers. The Director may re6 quire the periodic preparation of reports on the activities 

7 of the centers and the submission of such reports to the 

8 Director. The Director shall establish and fund mecha9 nisms and entities for collecting, storing, and coordinating 

10 data collected by the centers established under this section 

11 and data generated from public and private research part12 nerships. 

13 ‘‘(d) ORGANIZATION.—Each center of excellence 

14 under subsection (a) shall use the facilities of a single in15 stitution, or be formed from a consortium of cooperating 

16 institutions, meeting such requirements as may be pre17 scribed by the Director of NIH. 

18 ‘‘(e) NUMBER OF CENTERS; DURATION.— 

19 ‘‘(1) IN GENERAL.—The Director shall provide 

20 for the establishment of not less than 3 centers 

21 under subsection (a). 

22 ‘‘(A) DURATION.—A grant or contract 

23 awarded under subsection (a) shall not exceed 

24 a period of 5 years. Such period may be ex25 tended for 1 or more additional periods not ex-
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1 ceeding 5 years if the operations of the center 

2 of excellence involved have been reviewed by an 

3 appropriate technical and scientific peer review 

4 group established by the Director of NIH and 

5 the group has recommended to the Director 

6 that such period should be extended. 

7 ‘‘(f) AUTHORIZATION OF APPROPRIATIONS.—There 

8 is authorized to be appropriated to carry out this section, 

9 $6,000,000 for each of fiscal years 2007 through 2011.’’.

Æ