I 

112TH CONGRESS 

1ST SESSION H. R. 3489 

To require the President to call a White House Conference on Autism. 

IN THE HOUSE OF REPRESENTATIVES 

NOVEMBER 18, 2011 

Mr. BURTON of Indiana (for himself, Mrs. MALONEY, Mr. KING of New York, 

and Mr. SMITH of New Jersey) introduced the following bill; which was 

referred to the Committee on Energy and Commerce 

A BILL 

To require the President to call a White House Conference 

on Autism. 

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 ‘‘White House Con5 ference on Autism Act of 2011’’. 

6 SEC. 2. FINDINGS. 

7 The Congress finds the following: 

8 (1) Autism Spectrum Disorders (ASD) are the 

9 fastest-growing serious developmental disability in 


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1 the U.S. occurring in all racial, ethnic, and socio2 economic groups. 

3 (2) According to the Centers for Disease Con4 trol and Prevention’s Autism and Disabilities Moni5 toring Network the rate of autism in the United 

6 States has exploded from an estimated 1 in 10,000 

7 during the 1980s to the current rate of 1 in 150 

8 demonstrating that the United States is facing an 

9 literal epidemic of autism. 

10 (3) The epidemic shows no sign of slowing as 

11 a new case of autism is diagnosed almost every 20 

12 minutes. 

13 (4) More children will be diagnosed with autism 

14 this year than with AIDS, diabetes, and cancer com15 bined. 

16 (5) Autism costs the Nation over 

17 $35,000,000,000 per year, a figure expected to sig18 nificantly increase in the next decade. 

19 (6) Autism is a life changing condition not a 

20 life threatening condition. Our Nation’s educational, 

21 labor, housing and medical communities are ill22 equipped and undertrained to handle a generation of 

23 autism individuals. 

24 (7) In the long-term, this autism epidemic could 

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1 ture military, industrial, medical, and scientific tal2 ent. 

3 (8) Although autism spectrum disorders are an 

4 urgent societal concern and comprehensive research 

5 is the best hope for understanding the causes of au6 tism and other developmental disorders, autism re7 ceives less than 5 percent of the Federal research 

8 funding of many less prevalent childhood diseases. 

9 (9) In December 2006, Congress passed and 

10 President Bush signed into law the ‘‘Combating Au11 tism Act of 2006,’’ which committed nearly 

12 $1,000,000,000 to autism research, including essen13 tial research on environmental factors, treatments, 

14 and early identification and support services. 

15 (10) A White House Conference on Autism pre16 sents an historic opportunity to build on the founda17 tion of the Combating Autism Act to advance the 

18 scientific study and analysis of many promising cut19 ting-edge treatments and services for autism. 

20 SEC. 3. AUTHORIZATION OF THE CONFERENCE. 

21 (a) AUTHORITY TO CALL CONFERENCE.—Not later 

22 than December 31, 2012, the President shall call the 

23 White House Conference on Autism (in this Act referred 

24 to as the ‘‘Conference’’) to be convened not later than 18 

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1 lished in section 4, in order to make fundamental policy 

2 recommendations on ways to combat the autism epidemic 

3 in the United States and to implement the purposes set 

4 forth in subsection (c). 

5 (b) PLANNING AND DIRECTION.—The Secretary of 

6 Health and Human Services, the Secretary of Education, 

7 and the Secretary of Housing and Urban Development (in 

8 this Act referred to as the ‘‘Cochairs’’) shall plan, conduct, 

9 and convene the Conference, in consultation with the Sur10 geon General. 

11 (c) PURPOSES OF THE CONFERENCE.—The purposes 

12 of the Conference are to— 

13 (1) galvanize a national effort to find the un14 derlying cause or causes of autism; 

15 (2) identify viable solutions and valuable serv16 ices to help autistic individuals and families of autis17 tic individuals meet the challenges they face on a 

18 daily basis; 

19 (3) bring together the best scientific minds to 

20 chart a comprehensive research agenda, including 

21 the exploration of potential environmental triggers 

22 or contributors; 

23 (4) bring together parents of autistic children 

24 and leaders in the field of education and social serv25 ices to begin a national dialogue about addressing 


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1 the life-long challenges faced by these children and 

2 their families; 

3 (5) highlight emerging and innovative programs 

4 from the public and private sectors, including com5 munity-based and faith-based organizations that ef6 fectively serve the needs of autistic children and 

7 adults and recommend such programs as can be rea8 sonably and cost-effectively replicated; and 

9 (6) review the current structure, scope, and ef10 fectiveness of existing legislation and programs at 

11 the Federal, State, and local levels that provide au12 tism research services; and to develop such specific 

13 and comprehensive recommendations for legislative 

14 action as may be appropriate for improving those 

15 bills and programs with the aim of enhancing the 

16 health, quality of life and well-being of autistic indi17 viduals and their families. 

18 SEC. 4. POLICY COMMITTEE; RELATED COMMITTEES. 

19 (a) ESTABLISHMENT.—Not later than September 30, 

20 2011, there is established a Policy Committee comprising 

21 of 17 members to be selected as follows: 

22 (1) PRESIDENTIAL APPOINTEES.—Nine mem23 bers shall be selected by the President and shall in24 clude— 


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1 (A) 3 members who are officers or employ2 ees of the United States, including the Surgeon 

3 General; and 

4 (B) 6 members with experience in address5 ing the needs of people with autism spectrum 

6 disorders in the United States. 

7 (2) HOUSE APPOINTEES.— 

8 (A) Two members shall be selected by the 

9 Speaker of the House of Representatives after 

10 consultation with the chairperson of the Com11 mittee on Education and Labor, and the chair12 person of the Committee on Energy and Com13 merce, of the House of Representatives. 

14 (B) Two members shall be selected by the 

15 minority leader of the House of Representa16 tives, after consultation with the ranking minor17 ity members of such committees. 

18 (3) SENATE APPOINTEES.— 

19 (A) Two members shall be selected by the 

20 majority leader of the Senate, after consultation 

21 with members of the Committee on Health, 

22 Education, Labor, and Pensions, and the Com23 mittee on Banking, Housing, and Urban Affairs 

24 of the Senate. 


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1 (B) Two members shall be selected by the 

2 minority leader of the Senate, after consultation 

3 with members of such committees. 

4 (b) SPECIAL QUALIFICATIONS.—Of the members of 

5 the Policy Committee appointed under paragraph 

6 (a)(1)(B), (a)(2), and (a)(3), 50 percent must be drawn 

7 from private industry, the nonprofit sector, or academia, 

8 of whom— 

9 (1) at least 1 shall be a parent or legal guard10 ian of individuals with autism or other pervasive de11 velopmental disorders; 

12 (2) at least 1 other shall be knowledgeable 

13 about autism intervention programs and systems, in14 cluding complementary and alternative therapies; 

15 (3) at least 1 other shall be knowledgeable 

16 about programs specifically designed to meet the 

17 unique educational needs of children and adults with 

18 autism; 

19 (4) at least 1 other shall be knowledgeable 

20 about programs specifically designed to meet the 

21 unique housing needs of children and adults with au22 tism; 

23 (5) at least 1 other shall be knowledgeable 

24 about programs specifically designed to train and 

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1 cials to respond to the unique needs of children and 

2 adults with autism; and 

3 (6) at least 1 other shall be knowledgeable 

4 about environmental or toxic exposure of adults and 

5 children as it relates to the development of autism. 

6 (c) VOTING; CHAIRPERSON.— 

7 (1) VOTING.—The Policy Committee shall act 

8 by the vote of a majority of the members present. 

9 A quorum of Committee members shall be required 

10 to conduct Committee business. 

11 (2) CHAIRPERSON.—The Surgeon General shall 

12 serve as the chairperson of the Policy Committee. 

13 The chairperson may vote only to break a tie vote 

14 of the other members of the Policy Committee. 

15 (d) DUTIES OF THE POLICY COMMITTEE.—The Pol16 icy Committee shall initially meet at the call of the Co17 chairs, not later than 30 days after the last member is 

18 selected under subsection (a). Subsequent meetings of the 

19 Policy Committee shall be held at the call of the chair20 person. Through meetings, hearings, and working ses21 sions, the Policy Committee shall— 

22 (1) make recommendations to the Cochairs to 

23 facilitate the timely convening of the Conference; 


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1 (2) submit to the Cochairs a proposed agenda 

2 for the Conference not later than 90 days after the 

3 first meeting of the Policy Committee; 

4 (3) make recommendations for the delegates of 

5 the Conference; 

6 (4) establish the number of delegates to be se7 lected under section 5; and 

8 (5) establish an executive committee consisting 

9 of 3 members of the Policy Committee to work with 

10 delegates of the Conference. 

11 SEC. 5. CONFERENCE DELEGATES. 

12 To carry out the purposes of the Conference, the Co13 chairs shall bring together delegates representative of the 

14 spectrum of thought in the field of autism and 

15 neurodevelopmental disorders, without regard to political 

16 affiliation or past partisan activity, who shall include— 

17 (1) representatives of Federal, State, and local 

18 governments; 

19 (2) professional people and laypeople who are 

20 working in the field of autism and 

21 neurodevelopmental disorders; and 

22 (3) representatives of the general public who 

23 are affected by autism spectrum disorders in the 

24 United States. 


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1 SEC. 6. CONFERENCE ADMINISTRATION. 

2 (a) ADMINISTRATION.—In administering this section, 

3 the Cochairs shall— 

4 (1) provide written notice to all members of the 

5 Policy Committee of each meeting, hearing, or work6 ing session of such Committee not later than 48 

7 hours before the occurrence of such meeting, hear8 ing, or working session; 

9 (2) request the cooperation and assistance of 

10 the heads of such other Federal departments and 

11 agencies as may be appropriate, including the detail12 ing of personnel; 

13 (3) make available for public comment a pro14 posed agenda prepared by the Policy Committee, 

15 which will reflect to the greatest extent possible the 

16 major issues facing the field of autism consistent 

17 with the purposes of the Conference set forth in sec18 tion 3(c); 

19 (4) prepare and make available background ma20 terials that the Cochairs deem necessary for the use 

21 of delegates to the Conference; and 

22 (5) employ such additional personnel as may be 

23 necessary to carry out the provisions of this Act 

24 without regard to provisions of title 5, United States 

25 Code, governing appointments in the competitive 

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1 chapter III of chapter 53 of such title relating to 

2 classification and General Schedule pay rates. 

3 (b) DUTIES.—In carrying out the Cochairs’s respon4 sibilities and functions under this section, the Cochairs 

5 shall ensure that— 

6 (1) the proposed agenda prepared under sub7 section (a)(3) is published in the Federal Register 

8 not later than 30 days after such agenda is approved 

9 by the Policy Committee; 

10 (2) the personnel employed under subsection 

11 (a)(5) are fairly balanced in terms of points of views 

12 represented and are appointed without regard to po13 litical affiliation or previous partisan activities; 

14 (3) the recommendations of the Conference are 

15 not inappropriately influenced by any public official 

16 or by any special interest, but instead are the result 

17 of the independent and collective judgment of the 

18 delegates of the Conference; and 

19 (4) before the Conference is convened— 

20 (A) current and adequate statistical data 

21 (including decennial census data) and other in22 formation on autism spectrum disorders in the 

23 United States; and 


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1 (B) such information as may be necessary 

2 to evaluate Federal programs and policies relat3 ing to autism spectrum disorders; 

4 which the Cochairs may obtain by making grants to 

5 or entering into an agreement with, public agencies 

6 or nonprofit organizations, are readily available in 

7 advance of the Conference to the delegates. 

8 (c) GIFTS.—The Cochairs may accept, on behalf of 

9 the United States, gifts (in cash or in kind, including vol10 untary and uncompensated services), which shall be avail11 able to carry out this Act. Gifts of cash shall be available 

12 in addition to amounts appropriated to carry out this title. 

13 Gifts may be earmarked by the donor or the executive 

14 committee for a specific purpose. 

15 (d) RECORDS.—The Cochairs shall maintain records 

16 regarding— 

17 (1) the sources, amounts, and uses of gifts ac18 cepted under subsection (c); and 

19 (2) the identity of each person receiving assist20 ance to carry out this Act, and the amount of such 

21 assistance received by each such person. 

22 SEC. 7. REPORT OF THE CONFERENCE. 

23 (a) PRELIMINARY REPORT.—Not later than 100 days 

24 after the Conference adjourns, the Policy Committee shall 

25 prepare a preliminary report on the Conference which 


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1 shall be published in the Federal Register and submitted 

2 to the chief executive officers of the States. The Policy 

3 Committee shall request that the chief executive officers 

4 of the States submit to the Policy Committee, not later 

5 than 45 days after receiving such report, their views and 

6 findings on such report. 

7 (b) FINAL REPORT.—Not later than 6 months after 

8 the date on which the Conference adjourns, the Policy 

9 Committee shall— 

10 (1) prepare a final report of the Conference 

11 which shall include a compilation of the views and 

12 findings of the chief executive officers of the States 

13 received under subsection (a); and 

14 (2) publish in the Federal Register, and trans15 mit to the President and to Congress, the rec16 ommendations for the administrative action and the 

17 legislation necessary to implement the recommenda18 tions contained in such report. 

19 SEC. 8. STATUS REPORTS. 

20 (a) INITIAL STATUS REPORT.—Not later than 2 

21 years after the date on which the Conference adjourns, 

22 the Surgeon General shall— 

23 (1) prepare a status report documenting the im24 plementation of the recommendations contained in 

25 the final report described in section 7(b)(1); and 


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1 (2) publish in the Federal Register, and trans2 mit to the President and to Congress, such status 

3 report. 

4 (b) SUBSEQUENT STATUS REPORTS.—Not later than 

5 5 years after the date on which the Conference adjourns, 

6 and every 5 years thereafter until all recommendations in 

7 the final report described in section 7(b)(1) are achieved, 

8 the Comptroller General shall— 

9 (1) prepare a status report documenting the im10 plementation of the recommendations contained in 

11 such final report; and 

12 (2) publish in the Federal Register, and trans13 mit to the President and to Congress, such status 

14 report. 

15 SEC. 9. DEFINITION OF STATE. 

16 For the purposes of this Act, the term ‘‘State’’ means 

17 any of the several States, the District of Columbia, the 

18 Commonwealth of Puerto Rico, Guam, American Samoa, 

19 the Virgin Islands of the United States, or the Common20 wealth of the Northern Mariana Islands. 

21 SEC. 10. AUTHORIZATION OF APPROPRIATIONS. 

22 (a) AUTHORIZATION.— 

23 (1) IN GENERAL.—There are authorized to be 

24 appropriated to carry out this Act— 


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1 (A) such sums as may be necessary for the 

2 first fiscal year in which the Policy Committee 

3 plans the Conference and for the following fis4 cal year; and 

5 (B) such sums as may be necessary for the 

6 fiscal year in which the Conference is held. 

7 (2) LIMITATION.—Any new spending authority 

8 or new authority to enter into contracts under this 

9 Act, and under which the United States is obligated 

10 to make outlays, shall be effective only to the extent, 

11 and in such amounts, as are provided in advance in 

12 appropriations Acts. 

13 (b) AVAILABILITY OF FUNDS.— 

14 (1) IN GENERAL.—Except as provided in para15 graph (3), funds appropriated to carry out this Act 

16 and funds received as gifts under section 6(c) shall 

17 remain available for obligation or expenditure until 

18 the expiration of the 1-year period beginning on the 

19 date the Conference adjourns. 

20 (2) UNOBLIGATED FUNDS.—Except as provided 

21 in paragraph (3), any such funds neither expended 

22 nor obligated before the expiration of the 1-year pe23 riod beginning on the date the Conference adjourns 

24 shall be returned to the United States Treasury. 


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1 (3) CONFERENCE NOT CONVENED.—If the Con2 ference is not convened before December 31, 2012, 

3 a trust fund shall be established and such funds 

4 shall only be available for a future Conference on 

5 Autism. 

Æ 


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