II 

Calendar No. 578 

109TH CONGRESS 

2D SESSION S. 843 

[Report No. 109–318] 

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, 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 Mr. ENZI, 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. 


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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: 

11 ‘‘PART J—AUTISM-RELATED ACTIVITIES 

12 ‘‘SEC. 499A. AUTHORITY OF THE DIRECTOR OF THE NA13 TIONAL INSTITUTES OF HEALTH RELATING 

14 TO AUTISM. 

15 ‘‘(a) IDENTIFYING TOTAL EXPENDITURES ON AU16 TISM SPECTRUM DISORDERS.—The Director of NIH, in 

17 coordination with the National Institute of Mental Health 

18 and other institutes of the National Institutes of Health, 

19 shall identify the total amount of expenditures, both intra20 mural and extramural, by the National Institutes of 

21 Health for autism spectrum disorders for fiscal year 2005. 

22 ‘‘(b) BUDGET FOR AUTISM RESEARCH AND COORDI23 NATION OF ACTIVITIES AND PROGRAMS.—The Director of 

24 NIH, based on the strategic plan developed under sub25 section (c), shall— 


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

2 a scientifically justified budget for research on au3 tism spectrum disorders at the National Institutes of 

4 Health; 

5 ‘‘(2) coordinate all research activities and pro6 grams on autism spectrum disorders at the insti7 tutes, centers, and divisions of the National Insti8 tutes of Health; and 

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

10 ‘‘(c) STRATEGIC PLAN FOR AUTISM RESEARCH.— 

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

12 develop and oversee the implementation of a com13 prehensive, long-range plan for the conduct and sup14 port of research on autism spectrum disorders by 

15 the institutes, centers, and divisions of the National 

16 Institutes of Health. 

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

18 under paragraph (1) shall— 

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

20 ‘‘(B) be based on the research rec21 ommendations contained in the Autism Re22 search Roadmap and Matrix of the Interagency 

23 Autism Coordinating Committee; 


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1 ‘‘(C) determine and establish priorities 

2 among critical scientific questions related to au3 tism spectrum disorders; 

4 ‘‘(D) based on the priorities established 

5 under subparagraph (C), specify the short and 

6 long-range objectives to be achieved, and esti7 mate the resources needed to achieve these ob8 jectives; 

9 ‘‘(E) evaluate the sufficiency of existing re10 search programs on autism spectrum disorders 

11 to meet the objectives specified under subpara12 graph (D), and establish objectives, timelines, 

13 and criteria for evaluating future research pro14 grams; and 

15 ‘‘(F) make recommendations for changes 

16 to existing research programs on autism spec17 trum disorders. 

18 ‘‘(d) BUDGETARY AUTHORITY.— 

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

20 shall— 

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

22 developed under subsection (c), annually pre23 pare and submit to Congress a scientifically jus24 tified budget estimate for research on autism 

25 spectrum disorders to be conducted within the 


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1 agencies of the National Institutes of Health, 

2 which shall include the amount of funds that 

3 will be required for— 

4 ‘‘(i) the continued funding of ongoing 

5 discretionary program initiatives at the in6 stitutes, centers, and divisions of the Na7 tional Institutes of Health; and 

8 ‘‘(ii) the funding of new and com9 plementary program initiatives. 

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

11 spectrum disorders described in subparagraph 

12 (A), and allocate those funds to the institutes, 

13 centers, and divisions of the National Institutes 

14 of Health. 

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

16 shall become effective in the fiscal year following the 

17 submission of the autism budget described in para18 graph (1)(A). 

19 ‘‘(e) EVALUATION AND REPORT.— 

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

21 evaluate the effect of this section on the planning 

22 and coordination of research programs on autism 

23 spectrum disorders at the institutes, centers, and di24 visions of the National Institutes of Health, and the 

25 extent to which funding mandated under this section 


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1 has followed the recommendation of the strategic 

2 plan developed under subsection (c). 

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

4 date of enactment of this section, the Director of 

5 NIH shall prepare and submit to the Committee on 

6 Energy and Commerce and the Committee on Ap7 propriations of the House of Representatives, and 

8 the Committee on Health, Education, Labor, and 

9 Pensions and the Committee on Appropriations of 

10 the Senate, a report based on the evaluation de11 scribed in paragraph (1). 

12 ‘‘SEC. 499B. EXPANSION, INTENSIFICATION, AND COORDI13 NATION OF ACTIVITIES OF NATIONAL INSTI14 TUTES OF HEALTH WITH RESPECT TO RE15 SEARCH ON AUTISM. 

16 ‘‘(a) IN GENERAL.— 

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

18 of NIH shall expand, intensify, and coordinate the 

19 activities of the National Institutes of Health with 

20 respect to research on autism. 

21 ‘‘(2) ADMINISTRATION OF PROGRAM; COORDI22 NATION AMONG AGENCIES.—The Director of NIH 

23 shall carry out this section acting through the Direc24 tor of the National Institute of Mental Health and 

25 in collaboration with the National Institute of Child 


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1 Health and Human Development, the National In2 stitute of Neurological Disorders and Stroke, the 

3 National Institute of Environmental Health 

4 Sciences, the National Institute on Deafness and 

5 Other Communication Disorders, and any other 

6 agencies that the Director determines appropriate. 

7 ‘‘(b) CENTERS OF EXCELLENCE.— 

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

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

10 contracts to public or nonprofit private entities to 

11 pay all or part of the cost of planning, establishing, 

12 improving, and providing basic operating support for 

13 centers of excellence regarding research on autism. 

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

15 that receives funding under paragraph (1) shall con16 duct basic and clinical research into autism. Such 

17 research— 

18 ‘‘(A) shall be conducted in the fields of de19 velopmental neurobiology, genetics, and 

20 psychopharmacology, and, beginning on July 1, 

21 2008, immunology, endocrinology, gastro22 enterology, and toxicology; and 

23 ‘‘(B) should include— 


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1 ‘‘(i) investigations into the cause, di2 agnosis, early detection, prevention, con3 trol, treatment, and cure of autism; and 

4 ‘‘(ii) research on high-risk infant sib5 lings. 

6 ‘‘(3) SERVICES FOR PATIENTS.— 

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

8 that receives funding under paragraph (1) may 

9 expend amounts provided under a grant or con10 tract under such paragraph to carry out a pro11 gram to make individuals aware of opportuni12 ties to participate as subjects in research con13 ducted by the centers. 

14 ‘‘(B) REFERRALS AND COSTS.—A program 

15 carried out under subparagraph (A) may, in ac16 cordance with such criteria as the Director of 

17 NIH may establish, provide to the subjects de18 scribed in such subparagraph, referrals for 

19 health and other services, and such patient care 

20 costs as are required for research. 

21 ‘‘(C) AVAILABILITY AND ACCESS.—The ex22 tent to which a center of excellence that re23 ceives funding under paragraph (1) can dem24 onstrate availability and access to clinical serv25 ices shall be considered by the Director of NIH 


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1 in decisions about awarding grants or contracts 

2 to applicants that meet the scientific criteria for 

3 funding under this section. 

4 ‘‘(4) COORDINATION OF CENTERS OF EXCEL5 LENCE.— 

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

7 shall, as appropriate, provide for the coordina8 tion of information among centers of excellence 

9 that receive funding under paragraph (1) and 

10 centers of excellence that receive funding under 

11 section 463C, and ensure regular communica12 tion between such centers. 

13 ‘‘(B) PERIODIC REPORTS.—The Director 

14 of NIH may require the periodic preparation of 

15 reports on the activities of the centers described 

16 in subparagraph (A) and the submission of 

17 such reports to the Director. 

18 ‘‘(C) COLLECTION AND STORAGE OF

19 DATA.—The Director of NIH shall establish 

20 and fund mechanisms and entities for col21 lecting, storing, and coordinating data collected 

22 by the centers referred to in subparagraph (A) 

23 and data generated from public and private re24 search partnerships. 


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

2 that receives funding under paragraph (1) shall use 

3 the facilities of a single institution, or be formed 

4 from a consortium of cooperating institutions, meet5 ing such requirements as may be prescribed by the 

6 Director of NIH. 

7 ‘‘(6) NUMBER AND DURATION.— 

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

9 provide for the establishment of not less than 

10 10 centers under paragraph (1). 

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

12 awarded under paragraph (1) shall not exceed 

13 a period of 5 years. Such period may be ex14 tended for 1 or more additional periods not ex15 ceeding 5 years if the operations of the center 

16 of excellence involved have been reviewed by an 

17 appropriate technical and scientific peer review 

18 group established by the Director of NIH and 

19 the group has recommended to the Director 

20 that such period should be extended. 

21 ‘‘(C) FACILITATION OF RESEARCH.— 

22 ‘‘(i) ESTABLISHMENT OF PROGRAM.— 

23 The Director of NIH shall establish a pro24 gram under which samples of tissues and 

25 genetic and other biological materials that 


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1 are of use in research on autism are do2 nated, collected, preserved, and made avail3 able for such research. 

4 ‘‘(ii) ACCEPTED SCIENTIFIC STAND5 ARDS.—The program established under 

6 clause (i) shall be carried out in accord7 ance with accepted scientific and medical 

8 standards for the donation, collection, and 

9 preservation of such samples, and shall be 

10 conducted so that the tissues and other 

11 materials saved, as well as any database 

12 compiled from such tissues and materials, 

13 are available to researchers at a reasonable 

14 cost. 

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

16 section, the Director of NIH shall provide for a 

17 means through which the public can obtain in18 formation on the existing and planned pro19 grams and activities of the National Institutes 

20 of Health with respect to autism and through 

21 which the Director can receive comments from 

22 the public regarding such programs and activi23 ties. 

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

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


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1 $30,000,000 for each of fiscal years 2007 through 2011. 

2 Amounts appropriated under this subsection shall be in 

3 addition to any other amounts appropriated for such pur4 pose. 

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

6 IN AUTISM. 

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

8 through the Director of the National Institute of Child 

9 Health and Human Development and the Director of the 

10 National Institute on Deafness and Other Disorders, shall 

11 award grants and contracts to public or nonprofit private 

12 entities to pay all or part of the cost of planning, estab13 lishing, improving, and providing basic operating support 

14 for the Collaborative Programs of Excellence in Autism. 

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

16 subsection (a) shall conduct basic and clinical research 

17 into autism. Such program— 

18 ‘‘(1) shall conduct research in the fields of de19 velopmental neurobiology, genetics, and 

20 psychopharmacology, and, beginning July 1, 2008, 

21 in the fields of immunology, endocrinology, gastro22 enterology, and toxicology; and 

23 ‘‘(2) should conduct— 


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1 ‘‘(A) investigations into the cause, diag2 nosis, early detection, prevention, control, treat3 ment, and cure of autism; and 

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

5 ‘‘(c) COORDINATION OF PROGRAMS.— 

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

7 as appropriate, provide for the coordination of infor8 mation among programs established under sub9 section (a), and centers of excellence that receive 

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

11 regular communication between such centers. 

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

13 NIH may require the periodic preparation of reports 

14 on the activities of the programs described in para15 graph (1) and the submission of such reports to the 

16 Director. 

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

18 The Director of NIH shall establish and fund mech19 anisms and entities for collecting, storing, and co20 ordinating data collected by the programs referred 

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

22 and private research partnerships. 

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

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

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1 operating institutions, meeting such requirements as may 

2 be prescribed by the Director of NIH. 

3 ‘‘(e) NUMBER AND DURATION.— 

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

5 for the establishment of not less than 10 programs 

6 under paragraph (1). 

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

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

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

10 additional periods not exceeding 5 years if the oper11 ations of the program involved have been reviewed 

12 by an appropriate technical and scientific peer re13 view group established by the Director of NIH and 

14 the group has recommended to the Director that 

15 such period should be extended. 

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

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

18 $14,000,000 for each of fiscal years 2007 through 2011. 

19 Amounts appropriated under this subsection shall be in 

20 addition to any other amounts appropriated for such pur21 pose.’’. 


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1 SEC. 3. DEVELOPMENTAL DISABILITIES SURVEILLANCE 

2 AND RESEARCH PROGRAM. 

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

4 241 et seq.) is amended by adding at the end thereof the 

5 following: 

6 ‘‘PART R—PROGRAMS RELATING TO AUTISM 

7 ‘‘SEC. 399AA. DEVELOPMENTAL DISABILITIES SURVEIL8 LANCE AND RESEARCH PROGRAM. 

9 ‘‘(a) NATIONAL AUTISM AND PERVASIVE DEVELOP10 MENTAL DISABILITIES SURVEILLANCE PROGRAM.— 

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

12 through the Director of the Centers for Disease 

13 Control and Prevention, may award grants and co14 operative agreements to eligible entities for the col15 lection, analysis, and reporting of epidemiological 

16 data on autism and pervasive developmental disabil17 ities. In making such awards, the Secretary may 

18 provide direct technical assistance in lieu of cash. 

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

20 grant or cooperative agreement under paragraph (1), 

21 an entity shall be a public or nonprofit private entity 

22 (including a health department of a State or political 

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

24 educational institution), and submit to the Secretary 

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


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1 containing such information as the Secretary may 

2 require. 

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

4 PERVASIVE DEVELOPMENTAL DISABILITIES EPIDEMI5 OLOGY.— 

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

7 through the Director of the Centers for Disease 

8 Control and Prevention, shall establish not less than 

9 6 regional centers of excellence in autism and perva10 sive developmental disabilities epidemiology for the 

11 purpose of collecting and analyzing information on 

12 the number, incidence, incidence trend over time, 

13 correlates, and causes of autism and related develop14 mental disabilities. 

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

16 excellence under paragraph (1) shall be established 

17 and operated through the awarding of grants or co18 operative agreements to public or nonprofit private 

19 entities that conduct research, including health de20 partments of States and political subdivisions of 

21 States, and universities and other educational enti22 ties. 

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

24 a grant or cooperative agreement under paragraph 

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1 cation containing such agreements and information 

2 as the Secretary may require, including an agree3 ment that the center to be established shall operate 

4 in accordance with the following: 

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

6 report autism and pervasive developmental dis7 abilities data according to guidelines prescribed 

8 by the Director of the Centers for Disease Con9 trol and Prevention, after consultation with rel10 evant State and local public health officials, pri11 vate sector developmental disability researchers, 

12 and advocates for those with developmental dis13 abilities. 

14 ‘‘(B) The center will assist with the devel15 opment and coordination of State autism and 

16 pervasive developmental disabilities surveillance 

17 efforts within a region. 

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

19 and controls through its surveillance systems 

20 and conduct research into factors which may 

21 cause or increase the risk of autism and related 

22 developmental disabilities. 

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

24 area of special research expertise (including ge25 netics, environmental exposure to contaminants, 


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1 immunology, and other relevant research spe2 cialty areas). 

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

4 through the Director of the Centers for Disease Control 

5 and Prevention, shall carry out the following: 

6 ‘‘(1) ESTABLISHMENT.—The Secretary shall es7 tablish a clearinghouse within the Centers for Dis8 ease Control and Prevention for the collection and 

9 storage of data generated from the monitoring pro10 grams established under this part and part J of title 

11 IV. Through the clearinghouse, such Centers shall 

12 serve as the coordinating agency for autism and per13 vasive developmental disabilities surveillance activi14 ties. The functions of such clearinghouse shall in15 clude facilitating the coordination of research and 

16 policy development relating to the epidemiology of 

17 autism and other pervasive developmental disabil18 ities. 

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

20 coordinate the Federal response to requests for as21 sistance from State health department officials re22 garding potential or alleged autism or developmental 

23 disability clusters. 

24 ‘‘(3) FACILITATION OF RESEARCH.—The Sec25 retary shall provide for the establishment of a proVerDate Aug 31 2005 23:08 Aug 04, 2006 Jkt 049200 PO 00000 Frm 00018 Fmt 6652 Sfmt 6401 E:\BILLS\S843.RS S843

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1 gram under which samples of tissues and genetic 

2 and other biological materials that are of use in re3 search on autism are donated, collected, preserved, 

4 and made available for such research. Such program 

5 shall be carried out in accordance with accepted sci6 entific and medical standards for the donation, col7 lection, and preservation of such samples, and shall 

8 be conducted so that the tissues and other materials 

9 saved, as well as any database compiled from such 

10 tissues and materials, are available to researchers at 

11 a reasonable cost. 

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

13 Control and Prevention shall coordinate research 

14 and surveillance activities of such Centers with the 

15 National Institutes of Health, other appropriate 

16 Federal agencies, and interested nonprofit private 

17 entities, in a manner consistent with the research 

18 recommendations contained in the Autism Research 

19 Roadmap and Matrix of the Interagency Autism Co20 ordinating Committee, which shall be updated as de21 termined appropriate by the Secretary. 

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

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

24 Commonwealth of Puerto Rico, American Samoa, Guam, 

25 the Commonwealth of the Northern Mariana Islands, the 


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1 Virgin Islands, and the Trust Territory of the Pacific Is2 lands. 

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

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

5 $12,000,000 for each of fiscal years 2007 through 2011. 

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

7 AUTISM. 

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

9 and implement a program to provide information and edu10 cation on autism and its risk factors to health profes11 sionals and the general public, including information and 

12 education on advances in the diagnosis and treatment of 

13 autism and training and continuing education through 

14 programs for scientists, physicians, and other health pro15 fessionals who provide care for patients with autism. The 

16 program shall place special emphasis on early identifica17 tion of autism and those at risk for autism and prompt 

18 referral for appropriate services. 

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

20 made available under this section to provide stipends for 

21 health professionals who are enrolled in training programs 

22 under this section. 

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

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

25 $10,000,000 for each of fiscal years 2007 through 2011. 


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1 ‘‘SEC. 399CC. INTERAGENCY AUTISM COORDINATING COM2 MITTEE. 

3 ‘‘(a) ESTABLISHMENT.—The Secretary shall estab4 lish a committee to be known as the ‘Autism Coordinating 

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

6 to coordinate all efforts within the Department of Health 

7 and Human Services concerning autism, including activi8 ties carried out through the National Institutes of Health 

9 and the Centers for Disease Control and Prevention under 

10 the amendments made by the National Autism Research 

11 Act. 

12 ‘‘(b) MEMBERSHIP.— 

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

14 composed of— 

15 ‘‘(A) the Director of the Centers for Dis16 ease Control and Prevention; 

17 ‘‘(B) the Directors of such national re18 search institutes of the National Institutes of 

19 Health as the Secretary determines appropriate; 

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

21 the Secretary determines appropriate; and 

22 ‘‘(D) the additional members appointed 

23 under paragraph (2) (if any). 

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

25 appropriate by the Secretary, the Secretary may ap26 point to the Committee— 


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1 ‘‘(A) individuals with autism or other per2 vasive developmental disorders; 

3 ‘‘(B) parents or legal guardians of individ4 uals with autism or other pervasive develop5 mental disorders; 

6 ‘‘(C) representatives of leading autism re7 search and service organizations; and 

8 ‘‘(D) representatives of other governmental 

9 agencies that serve children with autism such 

10 as the Department of Education. 

11 ‘‘(c) ADMINISTRATIVE SUPPORT; TERMS OF SERV12 ICES; OTHER PROVISIONS.—The following shall apply 

13 with respect to the Committee: 

14 ‘‘(1) The Committee shall receive necessary and 

15 appropriate administrative support from the Sec16 retary. 

17 ‘‘(2) Members of the Committee appointed 

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

19 3 years, and may serve for an unlimited number of 

20 terms if reappointed. 

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

22 times each year. 


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

2 AUTISM; MEDICAL CARE FOR INDIVIDUALS 

3 WITH AUTISM. 

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

5 AND INTERVENTION PROGRAMS AND SYSTEMS.— 

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

7 through the Administrator of the Health Resources 

8 and Services Administration, shall award grants or 

9 cooperative agreements to eligible entities to develop 

10 statewide autism screening, diagnosis, and interven11 tion programs and systems for the purposes de12 scribed in paragraph (2). 

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

14 this paragraph are the following: 

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

16 of statewide autism screening, diagnosis, and 

17 intervention programs and systems, ensuring 

18 that all children are screened for autism before 

19 their second birthday, and that children at risk 

20 for autism receive appropriate services as early 

21 as possible. Intervention includes referral to 

22 schools and agencies, including community, con23 sumer, and parent-based agencies, and organi24 zations and other programs mandated by part 

25 C of the Individuals with Disabilities Education 

26 Act, which offer programs specifically designed 


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1 to meet the unique needs of children with au2 tism. 

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

4 screening, diagnosis, and intervention programs 

5 and systems that can be used for applied re6 search, program evaluation, and policy develop7 ment. 

8 ‘‘(C) To provide comprehensive medical 

9 care for individuals with autism through evi10 dence-based practices, with specific attention to 

11 medical conditions that may be associated with 

12 autism, and to disseminate information on the 

13 medical care of individuals with autism to 

14 health professionals and the general public. In 

15 carrying out the program under this paragraph, 

16 a grant shall be awarded to a national organiza17 tion that will establish and support regional 

18 centers of clinical excellence to provide medical 

19 care to individuals with autism and promote re20 search aimed at improving the treatment of 

21 such individuals, and that will build a shared 

22 national medical database to record the results 

23 of treatments and studies at the regional cen24 ters. 


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

2 appropriated under subsection (e), the Secretary 

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

4 fiscal years 2007 through 2011 to carry out activi5 ties described in paragraph (2)(C). 

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

7 AND APPLIED RESEARCH.—The Secretary, acting 

8 through the Director of the Centers for Disease Control 

9 and Prevention, shall award grants or cooperative agree10 ments to provide technical assistance to State agencies to 

11 conduct applied research related to autism screening, diag12 nosis, and intervention programs and systems. In carrying 

13 out this section the Secretary shall develop standardized 

14 procedures for data management and program effective15 ness and costs, including procedures— 

16 ‘‘(1) to ensure quality monitoring of autism 

17 screening, diagnosis, and intervention programs and 

18 systems; 

19 ‘‘(2) to provide technical assistance on data col20 lection and management; 

21 ‘‘(3) to study the costs and effectiveness of au22 tism screening, diagnosis, and intervention programs 

23 and systems conducted by State-based programs in 

24 order to address issues of importance to State and 

25 national policymakers; 


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

2 autism; 

3 ‘‘(5) to study the effectiveness of autism screen4 ing, diagnosis, and intervention programs and sys5 tems by assessing the intellectual and social develop6 ment, cognitive status, and language skills of chil7 dren with autism at school age; and 

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

9 autism with State-based birth defects and develop10 mental disabilities monitoring programs and environ11 mental discharge monitoring programs of the Envi12 ronmental Protection Agency for the purpose of 

13 identifying previously unknown causes of and risk 

14 factors for autism. 

15 ‘‘(c) COORDINATION AND COLLABORATION.— 

16 ‘‘(1) IN GENERAL.—In carrying out programs 

17 under this section, the Administrator of the Health 

18 Resources and Services Administration, the Director 

19 of the Centers for Disease Control and Prevention, 

20 and the Director of the National Institutes of Health 

21 shall collaborate and consult with— 

22 ‘‘(A) other Federal, State and local agen23 cies, including those responsible for early inter24 vention services pursuant to title XIX of the 

25 Social Security Act (particularly the Medicaid 


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1 Early and Periodic Screening, Diagnosis and 

2 Treatment Program), title XXI of the Social 

3 Security Act (State Children’s Health Insur4 ance Program), title V of the Social Security 

5 Act (Maternal and Child Health Block Grant 

6 Program), and part C of the Individuals with 

7 Disabilities Education Act; 

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

9 individuals with autism and their families; 

10 ‘‘(C) appropriate national medical and 

11 other health and education specialty organiza12 tions; 

13 ‘‘(D) individuals with autism and their 

14 families; 

15 ‘‘(E) other qualified personnel who possess 

16 the specialized knowledge, skills, and attributes 

17 needed to serve autistic children and their fami18 lies; and 

19 ‘‘(F) related commercial industries. 

20 ‘‘(2) POLICY DEVELOPMENT.—The Adminis21 trator of the Health Resources and Services Admin22 istration, the Director of the Centers for Disease 

23 Control and Prevention, and the Director of the Na24 tional Institutes of Health shall coordinate and col25 laborate on recommendations for policy development 


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1 at the Federal and State levels and with the private 

2 sector, including consumer, medical, and other 

3 health and education professional-based organiza4 tions, with respect to autism screening, diagnosis, 

5 and intervention programs and systems. 

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

7 AND INTERVENTION PROGRAMS AND SYSTEMS.—The 

8 Administrator of the Health Resources and Services 

9 Administration and the Director of the Centers for 

10 Disease Control and Prevention shall coordinate and 

11 collaborate in assisting States to establish autism 

12 screening, diagnosis, and intervention programs and 

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

14 collection system under subsection (b). 

15 ‘‘(d) PHYSICIAN REIMBURSEMENT FOR DEVELOP16 MENT SCREENING.—To make developmental screening 

17 more readily available, the Secretary, acting through the 

18 Administrator of the Centers for Medicare & Medicaid 

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

20 code for developmental screening. 

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

22 is authorized to be appropriated— 

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

24 for each of fiscal years 2007 through 2011; and 


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

2 for each of fiscal years 2007 through 2011. 

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

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

5 and each January 1 thereafter, the Secretary shall prepare 

6 and submit to the appropriate committees of Congress, a 

7 report concerning the implementation of this part and part 

8 J of title IV. 

9 ‘‘(b) CONTENTS.—The report, utilizing uniform re10 porting methods and procedures, shall— 

11 ‘‘(1) provide the dollar amount that each insti12 tute of the National Institutes of Health expended 

13 on autism research in the year for which the report 

14 was prepared; and 

15 ‘‘(2) detail the progress and success of the Na16 tional Institutes of Health in implementing and 

17 funding the recommendations contained in the Au18 tism Research Roadmap and Matrix of the Inter19 agency Autism Coordinating Committee.’’. 

20 SEC. 4. ENVIRONMENTAL HEALTH RESEARCH PROGRAMS. 

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

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

23 at the end the following: 


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1 ‘‘SEC. 463C. ENVIRONMENTAL HEALTH RESEARCH PRO2 GRAMS. 

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

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

5 awards grants and contracts to public or nonprofit private 

6 entities to pay all or part of the cost of planning, estab7 lishing, improving, and providing basic operating support 

8 for centers of excellence regarding environmental health 

9 and autism. 

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

11 subsection (a) shall conduct basic and clinical research 

12 into possible environmental causes of and risk factors for 

13 autism and the mechanisms by which they may lead to 

14 autism, and the developmental effects of environmental 

15 agents that may be associated with autism. 

16 ‘‘(c) COORDINATION; REPORTS.—The Director of 

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

18 information among centers of excellence established under 

19 subsection (a) and section 499B and ensure regular com20 munication between such centers. The Director may re21 quire the periodic preparation of reports on the activities 

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

23 Director. The Director shall establish and fund mecha24 nisms and entities for collecting, storing, and coordinating 

25 data collected by the centers established under this section 


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1 and data generated from public and private research part2 nerships. 

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

4 under subsection (a) shall use the facilities of a single in5 stitution, or be formed from a consortium of cooperating 

6 institutions, meeting such requirements as may be pre7 scribed by the Director of NIH. 

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

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

10 for the establishment of not less than 3 centers 

11 under subsection (a). 

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

13 awarded under subsection (a) shall not exceed 

14 a period of 5 years. Such period may be ex15 tended for 1 or more additional periods not ex16 ceeding 5 years if the operations of the center 

17 of excellence involved have been reviewed by an 

18 appropriate technical and scientific peer review 

19 group established by the Director of NIH and 

20 the group has recommended to the Director 

21 that such period should be extended. 

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

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

24 $6,000,000 for each of fiscal years 2007 through 2011.’’. 


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1 SECTION 1. SHORT TITLE. 

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

3 of 2006’’. 

4 SEC. 2. ACTIVITIES TO IMPROVE AUTISM-RELATED RE5 SEARCH. 

6 Section 409C of the Public Health Service Act (42 

7 U.S.C. 284g) is amended to read as follows: 

8 ‘‘SEC. 409C. AUTHORITY OF THE DIRECTOR OF THE NA9 TIONAL INSTITUTES OF HEALTH RELATING 

10 TO AUTISM. 

11 ‘‘(a) STRATEGIC PLAN FOR AUTISM RESEARCH.— 

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

13 through the Director, shall develop and implement a 

14 strategic plan for the conduct and support of research 

15 related to autism spectrum disorder. 

16 ‘‘(2) REQUIREMENTS.—The strategic plan devel17 oped under paragraph (1)— 

18 ‘‘(A) shall— 

19 ‘‘(i) be updated annually; 

20 ‘‘(ii) take into account the research rec21 ommendations of the Interagency Autism 

22 Coordinating Committee under section 

23 399CC; and 

24 ‘‘(iii) using professional judgment, out25 line the proposed budgetary requirements of 

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1 ing expectations for continued multi-year 

2 program activities, as well as new and com3 plementary program activities, subject to 

4 the availability of appropriations; and 

5 ‘‘(B) may include investigator-initiated re6 search. 

7 ‘‘(3) REPORT.—Not later than April 1, 2008, 

8 and annually thereafter, the Secretary, acting through 

9 the Director, shall prepare and submit to the appro10 priate committees of Congress a report that con11 tains— 

12 ‘‘(A) the strategic plan under paragraph (1) 

13 that will be applicable to the upcoming fiscal 

14 year; and 

15 ‘‘(B) a description of the actual dollar ex16 penditures for autism spectrum disorder during 

17 the previous fiscal year. 

18 ‘‘(b) EXPANSION, INTENSIFICATION, AND COORDINA19 TION OF ACTIVITIES.—The Secretary, acting through the 

20 Director, shall, subject to the availability of appropriations, 

21 expand, intensify, and coordinate the activities of the Na22 tional Institutes of Health with respect to autism spectrum 

23 disorder. 

24 ‘‘(c) CENTERS OF EXCELLENCE.— 

25 ‘‘(1) AUTISM CENTERS OF EXCELLENCE.— 


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

2 through the Director, shall, subject to the avail3 ability of appropriations, award grants or con4 tracts to public or nonprofit private entities to 

5 assist such entities in paying all or part of the 

6 costs of planning, establishing, improving, and 

7 providing basic operating support for centers of 

8 excellence concerning research on autism spec9 trum disorder. 

10 ‘‘(B) RESEARCH ACTIVITIES.—A center of 

11 excellence that receives funding under this para12 graph shall conduct basic and clinical research 

13 into autism spectrum disorder. Such research 

14 shall— 

15 ‘‘(i) be conducted in the fields of devel16 opmental neurobiology, genetics, epigenetics, 

17 pharmacology, nutrition, immunology, 

18 neuroimmunology, neurobehavioral develop19 ment, endocrinology, gastroenterology, 

20 psychopharmacology, or toxicology; and 

21 ‘‘(ii) include investigations into the 

22 causation, diagnosis or rule out, early detec23 tion, prevention, services, supports, or inter24 vention of autism spectrum disorder. 

25 ‘‘(C) SERVICES.— 


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1 ‘‘(i) IN GENERAL.—A center of excel2 lence that receives funding under this para3 graph may expend amounts provided under 

4 a grant or contract under such paragraph 

5 to carry out a program to make individuals 

6 aware of opportunities to participate as 

7 subjects in research conducted by the center. 

8 ‘‘(ii) REFERRALS AND COSTS.—A pro9 gram carried out under clause (i) may, in 

10 accordance with such criteria as the Direc11 tor may establish, provide to the subjects de12 scribed in such clause, referrals for health 

13 and other services and reimbursement of 

14 care for individuals as are required for such 

15 research. 

16 ‘‘(iii) AVAILABILITY AND ACCESS.—The 

17 extent to which a center of excellence that 

18 receives funding under this paragraph can 

19 demonstrate the availability of and access to 

20 clinical services shall be considered by the 

21 Director in making decisions concerning the 

22 awarding of grants or contracts to appli23 cants that meet the scientific criteria for 

24 funding under this section. 


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1 ‘‘(D) COORDINATION OF CENTERS OF EX2 CELLENCE.—The Director shall provide for the 

3 appropriate coordination of information among 

4 centers of excellence that receive funding under 

5 this paragraph and ensure regular communica6 tion between such centers. 

7 ‘‘(E) ORGANIZATION.—A center of excellence 

8 that receives funding under this paragraph shall 

9 use the facilities of a single institution, or be 

10 formed through a consortium of cooperating in11 stitutions, that meets such requirements as may 

12 be required by the Director. 

13 ‘‘(F) DURATION.—The term of a grant or 

14 contract awarded under this paragraph shall not 

15 exceed a period of 5 years. Such period may be 

16 extended for 1 or more additional periods not ex17 ceeding 5 years if the operations of the center of 

18 excellence involved have been reviewed by an ap19 propriate technical and scientific peer review 

20 group established by the Director and the group 

21 has recommended to the Director the extension of 

22 such period. 

23 ‘‘(G) GEOGRAPHIC DIVERSITY.—The Direc24 tor shall consider geographic diversity in award25 ing centers of excellence. 


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1 ‘‘(2) CENTERS OF EXCELLENCE IN ENVIRON2 MENTAL HEALTH AND AUTISM.— 

3 ‘‘(A) IN GENERAL.—The Director shall, sub4 ject to the availability of appropriations, award 

5 grants or contracts to public or nonprofit private 

6 entities to pay all or part of the cost of plan7 ning, establishing, improving, and providing 

8 basic operating support for centers of excellence 

9 regarding environmental health and autism spec10 trum disorder. 

11 ‘‘(B) RESEARCH.—A center of excellence es12 tablished under this paragraph shall conduct 

13 basic and clinical research of a broad array of 

14 environmental factors that may have a possible 

15 role in autism spectrum disorder. 

16 ‘‘(C) COORDINATION AND ORGANIZATION.— 

17 The Secretary, acting through the Director of 

18 NIH, shall apply to the centers under this para19 graph the same requirements concerning coordi20 nation, reporting, and organization as the re21 quirements applied to the centers of excellence 

22 under subparagraphs (D), (E), (F), and (G) of 

23 paragraph (1). 

24 ‘‘(d) COLLECTION AND STORAGE OF DATA.— 


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

2 through the Director and in coordination with the Di3 rector of the Centers for Disease Control and Preven4 tion, shall, subject to the availability of appropria5 tions, establish and provide funding for mechanisms 

6 and entities that provide for the collection, storage, 

7 coordination, and public availability of data that is 

8 collected by the centers of excellence under this section, 

9 under section 399AA(b), and under section 409C(c) 

10 and, to the extent possible, data generated from public 

11 and private research partnerships. In establishing 

12 such mechanisms and entities, the Secretary— 

13 ‘‘(A) shall ensure that there is data sharing 

14 among autism spectrum disorder researchers; 

15 and 

16 ‘‘(B) may utilize existing facilities. 

17 ‘‘(2) FACILITATION OF RESEARCH.— 

18 ‘‘(A) ESTABLISHMENT OF PROGRAM.—The 

19 Secretary shall establish a program under which 

20 samples of tissues and genetic and other biologi21 cal materials that are of use in research on au22 tism spectrum disorder are donated, collected, 

23 preserved, and made available for such research. 


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1 ‘‘(B) ACCEPTED SCIENTIFIC STANDARDS.— 

2 The program established under paragraph (1) 

3 shall be— 

4 ‘‘(i) carried out in accordance with ac5 cepted scientific and medical standards for 

6 the donation, collection, and preservation of 

7 such samples; and 

8 ‘‘(ii) conducted so that the tissues and 

9 other materials saved, as well as any data10 base compiled from such tissues and mate11 rials, are available to researchers at a rea12 sonable cost and on an expedited basis. 

13 ‘‘(e) CONSOLIDATION.—The Secretary, acting through 

14 the Director, may consolidate program activities under this 

15 section if such consolidation would improve program effi16 ciencies and outcomes. 

17 ‘‘(f) AUTHORIZATION OF APPROPRIATIONS.— 

18 ‘‘(1) IN GENERAL.—There is authorized to be ap19 propriated— 

20 ‘‘(A) $68,000,000 for fiscal year 2007, 

21 $82,000,000 for fiscal year 2008, $96,000,000 for 

22 fiscal year 2009, $120,000,000 for fiscal year 

23 2010, and $134,000,000 for fiscal year 2011, to 

24 carry out subsections (a), (b), and (d); 


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1 ‘‘(B) $26,000,000 for fiscal year 2007, 

2 $32,500,000 for fiscal year 2008, $39,000,000 for 

3 fiscal year 2009, $45,500,000 for fiscal year 

4 2010, and $52,000,000 for fiscal year 2011, to 

5 carry out subsection (c)(1); and 

6 ‘‘(C) $6,000,000 for fiscal year 2007, 

7 $7,500,000 for fiscal year 2008, $9,000,000 for 

8 fiscal year 2009, $10,500,000 for fiscal year 

9 2010, and $12,000,000 for fiscal year 2011, to 

10 carry out subsection (c)(2). 

11 ‘‘(2) GENERAL USAGE.—Of the amounts appro12 priated under subparagraphs (B) and (C) of para13 graph (1), not to exceed 5 percent of such amounts 

14 may be utilized by the National Institutes of Health 

15 for administrative and other expenses. 

16 ‘‘(g) SUNSET.—This section shall not apply after Sep17 tember 30, 2011.’’. 

18 SEC. 3. DEVELOPMENTAL DISABILITIES SURVEILLANCE 

19 AND RESEARCH PROGRAM. 

20 (a) IN GENERAL.—Title III of the Public Health Serv21 ice Act (42 U.S.C. 241 et seq.) is amended by adding at 

22 the end the following: 


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1 ‘‘PART R—PROGRAMS RELATING TO AUTISM 

2 ‘‘SEC. 399AA. DEVELOPMENTAL DISABILITIES SURVEIL3 LANCE AND RESEARCH PROGRAM. 

4 ‘‘(a) AUTISM SPECTRUM DISORDER AND OTHER DE5 VELOPMENTAL DISABILITIES.— 

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

7 through the Director of the Centers for Disease Con8 trol and Prevention, may award grants or cooperative 

9 agreements to eligible entities for the collection, anal10 ysis, and reporting of State epidemiological data on 

11 autism spectrum disorder and other developmental 

12 disabilities. An eligible entity shall assist with the de13 velopment and coordination of State autism spectrum 

14 disorder and other developmental disability surveil15 lance efforts within a region. In making such awards, 

16 the Secretary may provide direct technical assistance 

17 in lieu of cash. 

18 ‘‘(2) DATA STANDARDS.—In submitting epide19 miological data to the Secretary pursuant to sub20 section (a), an eligible entity shall report data accord21 ing to guidelines prescribed by the Director of the 

22 Centers for Disease Control and Prevention, after con23 sultation with relevant State and local public health 

24 officials, private sector developmental disability re25 searchers, and advocates for individuals with autism 

26 spectrum disorder or other developmental disabilities. 


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1 ‘‘(3) ELIGIBILITY.—To be eligible to receive an 

2 award under paragraph (1), an entity shall be a pub3 lic or nonprofit private entity (including a health de4 partment of a State or a political subdivision of a 

5 State, a university, or any other educational institu6 tion), and submit to the Secretary an application at 

7 such time, in such manner, and containing such in8 formation as the Secretary may require. 

9 ‘‘(b) CENTERS OF EXCELLENCE IN AUTISM SPECTRUM

10 DISORDER EPIDEMIOLOGY.— 

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

12 through the Director of the Centers for Disease Con13 trol and Prevention, shall, subject to the availability 

14 of appropriations, award grants or cooperative agree15 ments for the establishment of regional centers of ex16 cellence in autism spectrum disorder and other devel17 opmental disabilities epidemiology for the purpose of 

18 collecting and analyzing information on the number, 

19 incidence, correlates and causes of autism spectrum 

20 disorder and other developmental disabilities. 

21 ‘‘(2) REQUIREMENTS.—To be eligible to receive a 

22 grant or cooperative agreement under paragraph (1), 

23 an entity shall submit to the Secretary an applica24 tion containing such agreements and information as 

25 the Secretary may require, including an agreement 


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1 that the center to be established under the grant or co2 operative agreement shall operate in accordance with 

3 the following: 

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

5 report autism spectrum disorder and other devel6 opmental disability data according to guidelines 

7 prescribed by the Director of the Centers for Dis8 ease Control and Prevention, after consultation 

9 with relevant State and local public health offi10 cials, private sector developmental disability re11 searchers, and advocates for individuals with de12 velopmental disabilities. 

13 ‘‘(B) The center will develop or extend an 

14 area of special research expertise (including ge15 netics, epigenetics, epidemiological research re16 lated to environmental exposures), immunology, 

17 and other relevant research specialty areas. 

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

19 and controls through its surveillance system and 

20 conduct research into factors which may cause or 

21 increase the risk of autism spectrum disorder 

22 and other developmental disabilities. 

23 ‘‘(c) FEDERAL RESPONSE.—The Secretary shall co24 ordinate the Federal response to requests for assistance from 

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1 cials regarding potential or alleged autism spectrum dis2 order or developmental disability clusters. 

3 ‘‘(d) DEFINITIONS.—In this part: 

4 ‘‘(1) OTHER DEVELOPMENTAL DISABILITIES.— 

5 The term ‘other developmental disabilities’ has the 

6 meaning given the term ‘developmental disability’ in 

7 section 102(8) of the Developmental Disabilities As8 sistance and Bill of Rights Act of 2000 (42 U.S.C. 

9 15002(8)). 

10 ‘‘(2) STATE.—The term ‘State’ means each of the 

11 several States, the District of Columbia, the Common12 wealth of Puerto Rico, American Samoa, Guam, the 

13 Commonwealth of the Northern Mariana Islands, the 

14 Virgin Islands, and the Trust Territory of the Pacific 

15 Islands. 

16 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—To carry 

17 out this section, there is authorized to be appropriated, 

18 $15,000,000 for fiscal year 2007, and such sums as may 

19 be necessary for each of fiscal years 2008 through 2011. 

20 ‘‘(f) SUNSET.—This section shall not apply after Sep21 tember 30, 2011. 

22 ‘‘SEC. 399BB. AUTISM EDUCATION, EARLY DETECTION, AND 

23 INTERVENTION . 

24 ‘‘(a) PURPOSE.—It is the purpose of this section— 


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1 ‘‘(1) to increase awareness, reduce barriers to 

2 screening and diagnosis, promote evidence-based 

3 interventions for individuals with autism spectrum 

4 disorder or other developmental disabilities, and train 

5 professionals to utilize valid and reliable screening 

6 tools to diagnose or rule out and provide evidence7 based interventions for children with autism spectrum 

8 disorder and other developmental disabilities; and 

9 ‘‘(2) to conduct activities under this section with 

10 a focus on an interdisciplinary approach (as defined 

11 in programs developed under section 501(a)(2) of the 

12 Social Security Act) that will also focus on specific 

13 issues for children who are not receiving an early di14 agnosis and subsequent interventions. 

15 ‘‘(b) IN GENERAL.—The Secretary shall, subject to the 

16 availability of appropriations, establish and evaluate ac17 tivities to— 

18 ‘‘(1) provide information and education on au19 tism spectrum disorder and other developmental dis20 abilities to increase public awareness of developmental 

21 milestones; 

22 ‘‘(2) promote research into the development and 

23 validation of reliable screening tools for autism spec24 trum disorder and other developmental disabilities 


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1 and disseminate information regarding those screen2 ing tools; 

3 ‘‘(3) promote early screening of individuals at 

4 higher risk for autism spectrum disorder and other 

5 developmental disabilities as early as practicable, 

6 given evidence-based screening techniques and inter7 ventions; 

8 ‘‘(4) increase the number of individuals who are 

9 able to confirm or rule out a diagnosis of autism 

10 spectrum disorder and other developmental disabil11 ities; 

12 ‘‘(5) increase the number of individuals able to 

13 provide evidence-based interventions for individuals 

14 diagnosed with autism spectrum disorder or other de15 velopmental disabilities; and 

16 ‘‘(6) promote the use of evidence-based interven17 tions for individuals at higher risk for autism spec18 trum disorder and other developmental disabilities as 

19 early as practicable. 

20 ‘‘(c) INFORMATION AND EDUCATION.— 

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

22 (b)(1), the Secretary, in collaboration with the Sec23 retary of Education and the Secretary of Agriculture, 

24 shall, subject to the availability of appropriations, 

25 provide culturally competent information regarding 


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1 autism spectrum disorder and other developmental 

2 disabilities, risk factors, characteristics, identifica3 tion, diagnosis or rule out, and evidence-based inter4 ventions to meet the needs of individuals with autism 

5 spectrum disorder or other developmental disabilities 

6 and their families through— 

7 ‘‘(A) Federal programs, including— 

8 ‘‘(i) the Head Start program; 

9 ‘‘(ii) the Early Start program; 

10 ‘‘(iii) the Healthy Start program; 

11 ‘‘(iv) programs under the Child Care 

12 and Development Block Grant Act of 1990; 

13 ‘‘(v) programs under title XIX of the 

14 Social Security Act (particularly the Med15 icaid Early and Periodic Screening, Diag16 nosis and Treatment Program); 

17 ‘‘(vi) the program under title XXI of 

18 the Social Security Act (the State Chil19 dren’s Health Insurance Program); 

20 ‘‘(vii) the program under title V of the 

21 Social Security Act (Maternal and Child 

22 Health Block Grant Program); 

23 ‘‘(viii) the program under parts B and 

24 C of the Individuals with Disabilities Edu25 cation Act; 


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1 ‘‘(ix) the special supplemental nutri2 tion program for women, infants, and chil3 dren established under section 17 of the 

4 Child Nutrition Act of 1966 (42 U.S.C. 

5 1786); and 

6 ‘‘(x) the State grant program under the 

7 Rehabilitation Act of 1973. 

8 ‘‘(B) State licensed child care facilities; and 

9 ‘‘(C) other community-based organizations 

10 or points of entry for individuals with autism 

11 spectrum disorder and other developmental dis12 abilities to receive services. 

13 ‘‘(2) LEAD AGENCY.— 

14 ‘‘(A) DESIGNATION.—The governor of a 

15 State shall designate a public agency as a lead 

16 agency to coordinate the activities provided for 

17 under paragraph (1) in the State at the State 

18 level. 

19 ‘‘(B) INFORMATION.—The Governor or a 

20 State, acting through the lead agency under sub21 paragraph (A), shall make available to individ22 uals and their family members, guardians, advo23 cates, or authorized representatives, providers, 

24 and other appropriate individuals in the State, 

25 comprehensive culturally competent information 


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1 about State and local resources regarding autism 

2 spectrum disorder and other developmental dis3 abilities, risk factors, characteristics, identifica4 tion, diagnosis or rule out, available services and 

5 supports, and evidence-based interventions. Such 

6 information shall be provided through— 

7 ‘‘(i) toll-free telephone numbers; 

8 ‘‘(ii) Internet websites; 

9 ‘‘(iii) mailings; or 

10 ‘‘(iv) other means as the Governor may 

11 require. 

12 ‘‘(C) REQUIREMENTS OF AGENCY.—In des13 ignating the lead agency under subparagraph 

14 (A), the Governor shall— 

15 ‘‘(i) select an agency that has dem16 onstrated experience and expertise in— 

17 ‘‘(I) autism spectrum disorder 

18 and other developmental disability 

19 issues; and 

20 ‘‘(II) developing, implementing, 

21 conducting, and administering pro22 grams and delivering education, infor23 mation, and referral services (includ24 ing technology-based curriculum-devel25 opment services) to individuals with 


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1 developmental disabilities and their 

2 family members, guardians, advocates 

3 or authorized representatives, pro4 viders, and other appropriate individ5 uals locally and across the State; and 

6 ‘‘(ii) consider input from individuals 

7 with developmental disabilities and their 

8 family members, guardians, advocates or 

9 authorized representatives, providers, and 

10 other appropriate individuals. 

11 ‘‘(d) TOOLS.— 

12 ‘‘(1) IN GENERAL.—To promote the use of valid 

13 and reliable screening tools for autism spectrum dis14 order and other developmental disabilities, the Sec15 retary shall develop a curriculum for continuing edu16 cation to assist individuals in recognizing the need 

17 for valid and reliable screening tools and the use of 

18 such tools. 

19 ‘‘(2) COLLECTION, STORAGE, COORDINATION, AND

20 AVAILABILITY.—The Secretary, in collaboration with 

21 the Secretary of Education, shall provide for the col22 lection, storage, coordination, and public availability 

23 of tools described in paragraph (1), educational mate24 rials and other products that are used by the Federal 


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1 programs referred to in subsection (c)(1)(A), as well 

2 as— 

3 ‘‘(A) programs authorized under the Devel4 opmental Disabilities Assistance and Bill of 

5 Rights Act of 2000; 

6 ‘‘(B) early intervention programs or inter7 agency coordinating council’s authorized under 

8 part C of the Individuals with Disabilities Edu9 cation Act; and 

10 ‘‘(C) children with special health care needs 

11 programs authorized under title V of the Social 

12 Security Act. 

13 ‘‘(3) REQUIRED SHARING.—In establishing 

14 mechanisms and entities under this subsection, the 

15 Secretary, and the Secretary of Education, shall en16 sure the sharing of tools, materials, and products de17 veloped under this subsection among entities receiving 

18 funding under this section. 

19 ‘‘(e) DIAGNOSIS.— 

20 ‘‘(1) TRAINING.—The Secretary, in coordination 

21 with activities conducted under title V of the Social 

22 Security Act, shall, subject to the availability of ap23 propriations, expand existing interdisciplinary train24 ing opportunities or opportunities to increase the 

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1 uals with autism spectrum disorder or other develop2 mental disabilities and ensure that— 

3 ‘‘(A) competitive grants or cooperative 

4 agreements are awarded to public or non-profit 

5 agencies, including institutions of higher edu6 cation, to expanding existing or develop new ma7 ternal and child health interdisciplinary leader8 ship education in neurodevelopmental and re9 lated disabilities programs (similar to the pro10 grams developed under section 501(a)(2) of the 

11 Social Security Act) in States that do not have 

12 such a program; 

13 ‘‘(B) trainees under such training pro14 grams— 

15 ‘‘(i) receive an appropriate balance of 

16 academic, clinical, and community oppor17 tunities; 

18 ‘‘(ii) are culturally competent; 

19 ‘‘(iii) are ethnically diverse; 

20 ‘‘(iv) demonstrate a capacity to evalu21 ate, diagnose or rule out, develop, and pro22 vide evidence-based interventions to individ23 uals with autism spectrum disorder and 

24 other developmental disabilities; and 


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1 ‘‘(v) demonstrate an ability to use a 

2 family-centered approach; and 

3 ‘‘(C) program sites provide culturally com4 petent services. 

5 ‘‘(2) TECHNICAL ASSISTANCE.—The Secretary 

6 may award one or more grants under this section to 

7 provide technical assistance to the network of inter8 disciplinary training programs. 

9 ‘‘(3) BEST PRACTICES.—The Secretary shall pro10 mote research into additional valid and reliable tools 

11 for shortening the time required to confirm or rule 

12 out a diagnosis of autism spectrum disorder or other 

13 developmental disabilities and detecting individuals 

14 with autism spectrum disorder or other developmental 

15 disabilities at an earlier age. 

16 ‘‘(f) INTERVENTION.—The Secretary shall promote re17 search, through grants or contracts, to determine the evi18 dence-based practices for interventions for individuals with 

19 autism spectrum disorder or other developmental disabil20 ities, develop guidelines for those interventions, and dis21 seminate information related to such research and guide22 lines. 

23 ‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—To carry 

24 out this section, there is authorized to be appropriated, 

25 $32,000,000 for fiscal year 2007, $37,000,000 for fiscal year 


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1 2008, $42,000,000 for fiscal year 2009, $47,000,000 for fis2 cal year 2010, and $52,000,000 for fiscal year 2011, of 

3 which— 

4 ‘‘(1) $5,000,000 shall be made available in each 

5 fiscal year for activities described in subsection (c); 

6 and 

7 ‘‘(2) $3,000,000 shall be made available in fiscal 

8 year 2007, $6,000,000 in fiscal year 2008, $9,000,000 

9 in fiscal year 2009, $12,000,000 in fiscal year 2010, 

10 and $15,000,000 in fiscal year 2011, for activities de11 scribed in subsection (f). 

12 ‘‘(h) SUNSET.—This section shall not apply after Sep13 tember 30, 2011. 

14 ‘‘SEC. 399CC. INTERAGENCY AUTISM COORDINATING COM15 MITTEE. 

16 ‘‘(a) ESTABLISHMENT.—The Secretary shall establish 

17 a committee, to be known as the ‘Interagency Autism Co18 ordinating Committee’ (in this section referred to as the 

19 ‘Committee’), to coordinate all efforts within the Depart20 ment of Health and Human Services concerning autism 

21 spectrum disorder. 

22 ‘‘(b) RESPONSIBILITIES.—In carrying out its duties 

23 under this section, the Committee shall— 

24 ‘‘(1) make recommendations concerning the stra25 tegic plan described in section 409C(a); 


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1 ‘‘(2) develop and annually update advances in 

2 autism spectrum disorder research related to causes, 

3 early screening, diagnosis or rule out, intervention, 

4 and access to services and supports for individuals 

5 with autism spectrum disorder; and 

6 ‘‘(3) make recommendations to the Secretary re7 garding the public participation in decisions relating 

8 to autism spectrum disorder. 

9 ‘‘(c) MEMBERSHIP.— 

10 ‘‘(1) IN GENERAL.—The Committee shall be com11 posed of— 

12 ‘‘(A) the Director of the Centers for Disease 

13 Control and Prevention; 

14 ‘‘(B) the Director of the National Institutes 

15 of Health, and the Directors of such national re16 search institutes of the National Institutes of 

17 Health as the Secretary determines appropriate; 

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

19 Secretary determines appropriate; 

20 ‘‘(D) representatives of other Federal Gov21 ernmental agencies that serve individuals with 

22 autism spectrum disorder such as the Depart23 ment of Education; and 

24 ‘‘(E) the additional members appointed 

25 under paragraph (2). 


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1 ‘‘(2) ADDITIONAL MEMBERS.—Not fewer than 6 

2 members of the Committee, or 1/3 of the total member3 ship of the Committee, whichever is greater, shall be 

4 composed of non-federal public members to be ap5 pointed by the Secretary, of which— 

6 ‘‘(A) at least one such member shall be an 

7 individual with a diagnosis of autism spectrum 

8 disorder; 

9 ‘‘(B) at least one such member shall be a 

10 parent or legal guardian of an individual with 

11 an autism spectrum disorder; and 

12 ‘‘(C) at least one such member shall be a 

13 representative of leading research, advocacy, and 

14 service organizations for individuals with autism 

15 spectrum disorder. 

16 ‘‘(d) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE; 

17 OTHER PROVISIONS.—The following provisions shall apply 

18 with respect to the Committee: 

19 ‘‘(1) The Committee shall receive necessary and 

20 appropriate administrative support from the Sec21 retary. 

22 ‘‘(2) Members of the Committee appointed under 

23 subsection (c)(2) shall serve for a term of 4 years, and 

24 may be reappointed for one or more additional 4 year 

25 term. Any member appointed to fill a vacancy for an 


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1 unexpired term shall be appointed for the remainder 

2 of such term. A member may serve after the expira3 tion of the member’s term until a successor has taken 

4 office. 

5 ‘‘(3) The Committee shall meet at the call of the 

6 chairperson or upon the request of the Secretary. The 

7 Committee shall meet not fewer than 2 times each 

8 year. 

9 ‘‘(4) All meetings of the Committee shall be pub10 lic and shall include appropriate time periods for 

11 questions and presentations by the public. 

12 ‘‘(e) COMPENSATION AND EXPENSES.—Members of the 

13 Committee who are officers or employees of the Federal Gov14 ernment shall serve as members of the Committee without 

15 compensation in addition to that received in their regular 

16 government employment. Other members of the Committee 

17 shall receive compensation at rates not to exceed the daily 

18 equivalent of the annual rate in effect for grade GS–18 of 

19 the General Schedule for each day (including travel time) 

20 they are engaged in the performance of their duties as mem21 bers of the Committee. 

22 ‘‘(f) SUBCOMMITTEES; ESTABLISHMENT AND MEMBER23 SHIP.—In carrying out its functions, the Committee may 

24 establish subcommittees and convene workshops and con25 ferences. Such subcommittees shall be composed of ComVerDate Aug 31 2005 23:08 Aug 04, 2006 Jkt 049200 PO 00000 Frm 00057 Fmt 6652 Sfmt 6203 E:\BILLS\S843.RS S843

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1 mittee members and may hold such meetings as are nec2 essary to enable the subcommittees to carry out their duties. 

3 ‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—To carry 

4 out this section, there is authorized to be appropriated, such 

5 sums as may be necessary for each of fiscal years 2007 

6 through 2011. 

7 ‘‘(h) SUNSET.—This section shall not apply after Sep8 tember 30, 2011 and the Committee shall be terminated on 

9 such date. 

10 ‘‘SEC. 399DD. REPORT TO CONGRESS. 

11 ‘‘(a) IN GENERAL.—Not later than 4 years after the 

12 date of enactment of the Combating Autism Act of 2006, 

13 the Secretary, in coordination with the Secretary of Edu14 cation, shall prepare and submit to the Health, Education, 

15 Labor, and Pensions Committee of the Senate and the En16 ergy and Commerce Committee of the House of Representa17 tives a progress report on activities related to autism spec18 trum disorder and other developmental disabilities. 

19 ‘‘(b) CONTENTS.—The report submitted under sub20 section (a) shall contain— 

21 ‘‘(1) a description of the progress made in imple22 menting the provisions of the Combating Autism Act 

23 of 2006; 


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1 ‘‘(2) a description of the amounts expended on 

2 the implementation of the particular provisions of 

3 Combating Autism Act of 2006; 

4 ‘‘(3) information on the incidence of autism 

5 spectrum disorder and trend data of such incidence 

6 since the date of enactment of the Combating Autism 

7 Act of 2006; 

8 ‘‘(4) information on the average age of diagnosis 

9 for children with autism spectrum disorder and other 

10 disabilities, including how that age may have 

11 changed over the 4-year period beginning on the date 

12 of enactment of this Act; 

13 ‘‘(5) information on the average age for interven14 tion for individuals diagnosed with autism spectrum 

15 disorder and other developmental disabilities, includ16 ing how that age may have changed over the 4-year 

17 period beginning on the date of enactment of this Act; 

18 ‘‘(6) information on the average time between 

19 initial screening and then diagnosis or rule out for 

20 individuals with autism spectrum disorder or other 

21 developmental disabilities, as well as information on 

22 the average time between diagnosis and evidence23 based intervention for individuals with autism spec24 trum disorder or other developmental disabilities; 


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1 ‘‘(7) information on the effectiveness and out2 comes of interventions for individuals diagnosed with 

3 autism spectrum disorder, including by various 

4 subtypes, and other developmental disabilities and 

5 how the age of the child may affect such effectiveness; 

6 ‘‘(8) information on the effectiveness and out7 comes of innovative and newly developed intervention 

8 strategies for individuals with autism spectrum dis9 order or other developmental disabilities; and 

10 ‘‘(9) information on services and supports pro11 vided to individuals with autism spectrum disorder 

12 and other developmental disabilities who have reached 

13 the age of majority (as defined for purposes of section 

14 615(m) of the Individuals with Disabilities Education 

15 Act (20 U.S.C. 1415(m)).’’. 

16 (b) REPEALS.—The following sections of the Children’s 

17 Health Act of 2000 (Public Law 106–310) are repealed: 

18 (1) Section 101 (42 U.S.C. 247b–4a) relating to 

19 research activities at the National Institutes of 

20 Health. 

21 (2) Section 102 (42 U.S.C. 247b–4b) relating to 

22 the Developmental Disabilities Surveillance and Re23 search Program. 

24 (3) Section 103 (42 U.S.C. 247b–4c) relating to 

25 information and education. 


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1 (4) Section 104 (42 U.S.C. 247b–4d) relating to 

2 the Inter-Agency Autism Coordinating Committee. 

3 (5) Section 105 (42 U.S.C. 247b–4e) relating to 

4 reports. 


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Calendar No. 578 

109TH CONGRESS 

2D SESSION S. 843 

[Report No. 109

–318] 

A BILL 

To amend the Public Health Service Act to combat 

and education. autism through research, screening, intervention 

AUGUST 3, 2006 

Reported with an amendment 


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