I 

109TH CONGRESS 

1ST SESSION H. R. 2421 

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

screening, intervention and education. 

IN THE HOUSE OF REPRESENTATIVES 

MAY 18, 2005 

Mrs. BONO (for herself and Ms. DEGETTE) introduced the following bill; 

which was referred to the Committee on Energy and Commerce 

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. DEVELOPMENTAL DISABILITIES SURVEILLANCE 

7 AND RESEARCH PROGRAM. 

8 (a) SURVEILLANCE PROGRAM; CENTERS OF EXCEL9 LENCE; CLEARINGHOUSE.—Section 102(e) of the Chil10 dren’s Health Act of 2000 (42 U.S.C. 247b–4b) is amend-
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1 ed by striking ‘‘There are authorized’’ and all that follows 

2 and inserting the following: ‘‘For the purpose of carrying 

3 out this section, there are authorized to be appropriated 

4 such sums as may be necessary for fiscal year 2006 and 

5 each subsequent fiscal year.’’. 

6 (b) ADDITIONAL PROGRAMS.—Title III of the Public 

7 Health Service Act (42 U.S.C. 241 et seq.) is amended 

8 by adding at the end thereof the following: 

9 ‘‘PART R—PROGRAMS RELATING TO AUTISM 

10 ‘‘SEC. 399AA. INFORMATION AND EDUCATION RELATING TO 

11 AUTISM. 

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

13 and implement a program to provide information and edu14 cation on autism and its risk factors to health profes15 sionals and the general public, including information and 

16 education on advances in the diagnosis and treatment of 

17 autism and training and continuing education through 

18 programs for scientists, physicians, and other health pro19 fessionals who provide care for patients with autism. The 

20 program shall place special emphasis on early identifica21 tion of autism and those at risk for autism and prompt 

22 referral for appropriate services. 

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

24 made available under this section to provide stipends for 
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1 health professionals who are enrolled in training programs 

2 under this section. 

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

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

5 $10,000,000 for each of fiscal years 2007 through 2011. 

6 ‘‘SEC. 399BB. INTERAGENCY AUTISM COORDINATING COM7 MITTEE. 

8 ‘‘(a) ESTABLISHMENT.—The Secretary shall estab9 lish a committee to be known as the ‘Autism Coordinating 

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

11 to coordinate all efforts within the Department of Health 

12 and Human Services concerning autism, including activi13 ties carried out through the National Institutes of Health 

14 and the Centers for Disease Control and Prevention under 

15 the amendments made by the National Autism Research 

16 Act. 

17 ‘‘(b) MEMBERSHIP.— 

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

19 composed of— 

20 ‘‘(A) the Director of the Centers for Dis21 ease Control and Prevention; 

22 ‘‘(B) the Directors of such national re23 search institutes of the National Institutes of 

24 Health as the Secretary determines appropriate; 
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1 ‘‘(C) the heads of such other agencies as 

2 the Secretary determines appropriate; and 

3 ‘‘(D) the additional members appointed 

4 under paragraph (2) (if any). 

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

6 appropriate by the Secretary, the Secretary may ap7 point to the Committee— 

8 ‘‘(A) individuals with autism or other per9 vasive developmental disorders; 

10 ‘‘(B) parents or legal guardians of individ11 uals with autism or other pervasive develop12 mental disorders; 

13 ‘‘(C) representatives of leading autism re14 search and service organizations; and 

15 ‘‘(D) representatives of other governmental 

16 agencies that serve children with autism such 

17 as the Department of Education. 

18 ‘‘(c) ADMINISTRATIVE SUPPORT; TERMS OF SERV19 ICES; OTHER PROVISIONS.—The following shall apply 

20 with respect to the Committee: 

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

22 appropriate administrative support from the Sec23 retary. 

24 ‘‘(2) Members of the Committee appointed 

25 under subsection (b)(2)(A) shall serve for a term of 
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1 3 years, and may serve for an unlimited number of 

2 terms if reappointed. 

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

4 times each year. 

5 ‘‘SEC. 399CC. SCREENING, DIAGNOSIS, AND TREATMENT OF 

6 AUTISM; MEDICAL CARE FOR INDIVIDUALS 

7 WITH AUTISM. 

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

9 AND INTERVENTION PROGRAMS AND SYSTEMS.— 

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

11 through the Administrator of the Health Resources 

12 and Services Administration, shall award grants or 

13 cooperative agreements to eligible entities to develop 

14 statewide autism screening, diagnosis, and interven15 tion programs and systems for the purposes de16 scribed in paragraph (2). 

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

18 this paragraph are the following: 

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

20 of statewide autism screening, diagnosis, and 

21 intervention programs and systems, ensuring 

22 that all children are screened for autism before 

23 their second birthday, and that children at risk 

24 for autism receive appropriate services as early 

25 as possible. Intervention includes referral to 
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1 schools and agencies, including community, con2 sumer, and parent-based agencies, and organi3 zations and other programs mandated by part 

4 C of the Individuals with Disabilities Education 

5 Act, which offer programs specifically designed 

6 to meet the unique needs of children with au7 tism. 

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

9 screening, diagnosis, and intervention programs 

10 and systems that can be used for applied re11 search, program evaluation, and policy develop12 ment. 

13 ‘‘(C) To provide comprehensive medical 

14 care for individuals with autism through evi15 dence-based practices, with specific attention to 

16 medical conditions that may be associated with 

17 autism, and to disseminate information on the 

18 medical care of individuals with autism to 

19 health professionals and the general public. In 

20 carrying out the program under this paragraph, 

21 a grant shall be awarded to a national organiza22 tion that will establish and support regional 

23 centers of clinical excellence to provide medical 

24 care to individuals with autism and promote re25 search aimed at improving the treatment of 
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1 such individuals, and that will build a shared 

2 national medical database to record the results 

3 of treatments and studies at the regional cen4 ters. 

5 ‘‘(3) PARENTAL CONSENT.—Screenings and 

6 other services available under this section for a child 

7 may not be provided without the consent of a parent 

8 or legal guardian of the child. 

9 ‘‘(4) SET ASIDE OF FUNDS.—From amounts 

10 appropriated under subsection (e), the Secretary 

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

12 fiscal years 2007 through 2011 to carry out activi13 ties described in paragraph (2)(C). 

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

15 AND APPLIED RESEARCH.—The Secretary, acting 

16 through the Director of the Centers for Disease Control 

17 and Prevention, shall award grants or cooperative agree18 ments to provide technical assistance to State agencies to 

19 conduct applied research related to autism screening, diag20 nosis, and intervention programs and systems. In carrying 

21 out this section the Secretary shall develop standardized 

22 procedures for data management and program effective23 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) AUTHORIZATION OF APPROPRIATIONS.—There 

2 are authorized to be appropriated— 

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

4 for each of fiscal years 2007 through 2011; and 

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

6 for each of fiscal years 2007 through 2011. 

7 ‘‘SEC. 399DD. ANNUAL REPORT ON AUTISM. 

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

9 and each January 1 thereafter, the Secretary shall prepare 

10 and submit to the appropriate committees of Congress, a 

11 report concerning the implementation of this part. 

12 ‘‘(b) CONTENTS.—The report, utilizing uniform re13 porting methods and procedures, shall— 

14 ‘‘(1) provide the dollar amount that each insti15 tute of the National Institutes of Health expended 

16 on autism research in the year for which the report 

17 was prepared; and 

18 ‘‘(2) detail the progress and success of the Na19 tional Institutes of Health in implementing and 

20 funding the recommendations contained in the Au21 tism Research Roadmap and Matrix of the Inter22 agency Autism Coordinating Committee.’’. 

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