I
111th CONGRESS
1st Session
H. R. 3703
IN THE HOUSE OF REPRESENTATIVES
October 1, 2009
Mr. Burton of Indiana (for himself, Mr. Wexler, Mr. McMahon, and Mr. Turner) 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.
Short title
This Act may be cited as the
White House Conference on Autism Act
of 2009
.
Findings
The Congress finds the following:
Autism Spectrum Disorders (ASD) are the fastest-growing serious developmental disability in the U.S. occurring in all racial, ethnic, and socioeconomic groups.
According to the Centers for Disease Control and Prevention’s Autism and Disabilities Monitoring Network the rate of Autism in the United States has exploded from an estimated 1 in 10,000 during the 1980s to a the current rate of 1 in 150 demonstrating that the United States is facing an literal epidemic of autism.
The epidemic shows no sign of slowing as a new case of autism is diagnosed almost every 20 minutes.
More children will be diagnosed with autism this year than with AIDS, diabetes, and cancer combined.
Autism costs the Nation over $35,000,000,000 per year, a figure expected to significantly increase in the next decade.
Autism is a life changing condition not a life threatening condition. Our Nation’s educational, labor, housing and medical communities are ill-equipped and undertrained to handle a generation of autism individuals.
In the long-term, this autism epidemic could potentially deprive our Nation of a huge pool of future military, industrial, medical, and scientific talent.
Although autism spectrum disorders are an urgent societal concern and comprehensive research is the best hope for understanding the causes of autism and other developmental disorders, autism receives less than 5 percent of the Federal research funding of many less prevalent childhood diseases.
In December 2006,
Congress passed and President Bush signed into law the Combating Autism
Act of 2006,
which committed nearly $1,000,000,000 to autism research,
including essential research on environmental factors, treatments, and early
identification and support services.
A White House Conference on Autism presents an historic opportunity to build on the foundation of the Combating Autism Act to advance the scientific study and analysis of many promising cutting-edge treatments and services for autism.
Authorization of the conference
Authority To Call Conference
Not later than December 31, 2010, the President
shall call the White House Conference on Autism (in this Act referred to as the
Conference
) to be convened not later than 18 months after the
selection of the Policy Committee established in section 4, in order to make
fundamental policy recommendations on ways to combat the autism epidemic in the
United States and to implement the purposes set forth in subsection (c).
Planning and Direction
The Secretary of Health and Human Services, the
Secretary of Education, and the Secretary of Housing and Urban Development (in
this Act referred to as the Cochairs
) shall plan, conduct, and
convene the Conference, in consultation with the Surgeon General.
Purposes of the Conference
The purposes of the Conference are to—
galvanize a national effort to find the underlying cause or causes of autism;
identify viable solutions and valuable services to help autistic individuals and families of autistic individuals meet the challenges they face on a daily basis;
bring together the best scientific minds to chart a comprehensive research agenda, including the exploration of potential environmental triggers or contributors;
bring together parents of autistic children and leaders in the field of education and social services to begin a national dialogue about addressing the life-long challenges faced by these children and their families;
highlight emerging and innovative programs from the public and private sectors, including community-based and faith-based organizations that effectively serve the needs of autistic children and adults and recommend such programs as can be reasonably and cost-effectively replicated; and
review the current structure, scope, and effectiveness of existing legislation and programs at the Federal, State, and local levels that provide autism research services; and to develop such specific and comprehensive recommendations for legislative action as may be appropriate for improving those bills and programs with the aim of enhancing the health, quality of life and well-being of autistic individuals and their families.
Policy committee; related committees
Establishment
Not later than June 30, 2009, there is established a Policy Committee comprising of 17 members to be selected as follows:
Presidential appointees
Nine members shall be selected by the President and shall include—
3 members who are officers or employees of the United States, including the Surgeon General; and
6 members with experience in addressing the needs of people with autism spectrum disorders in the United States.
House appointees
Two members shall be selected by the Speaker of the House of Representatives after consultation with the chairperson of the Committee on Education and Labor, and the chairperson of the Committee on Energy and Commerce, of the House of Representatives.
Two members shall be selected by the minority leader of the House of Representatives, after consultation with the ranking minority members of such committees.
Senate appointees
Two members shall be selected by the majority leader of the Senate, after consultation with members of the Committee on Health, Education, Labor, and Pensions, and the Committee on Banking, Housing, and Urban Affairs of the Senate.
Two members shall be selected by the minority leader of the Senate, after consultation with members of such committees.
Special qualifications
Of the members of the Policy Committee appointed under paragraph (a)(1)(B), (a)(2), and (a)(3), 50 percent must be drawn from private industry, the nonprofit sector, or academia, of whom—
at least 1 shall be a parent or legal guardian of individuals with autism or other pervasive developmental disorders;
at least 1 other shall be knowledgeable about autism intervention programs and systems, including complementary and alternative therapies;
at least 1 other shall be knowledgeable about programs specifically designed to meet the unique educational needs of children and adults with autism;
at least 1 other shall be knowledgeable about programs specifically designed to meet the unique housing needs of children and adults with autism;
at least 1 other shall be knowledgeable about programs specifically designed to train and educate law enforcement and criminal justice officials to respond to the unique needs of children and adults with autism; and
at least 1 other shall be knowledgeable about environmental or toxic exposure of adults and children as it relates to the development of autism.
Voting; Chairperson
Voting
The Policy Committee shall act by the vote of a majority of the members present. A quorum of Committee members shall be required to conduct Committee business.
Chairperson
The Surgeon General shall serve as the chairperson of the Policy Committee. The chairperson may vote only to break a tie vote of the other members of the Policy Committee.
Duties of the Policy Committee
The Policy Committee shall initially meet at the call of the Cochairs, not later than 30 days after the last member is selected under subsection (a). Subsequent meetings of the Policy Committee shall be held at the call of the chairperson. Through meetings, hearings, and working sessions, the Policy Committee shall—
make recommendations to the Cochairs to facilitate the timely convening of the Conference;
submit to the Cochairs a proposed agenda for the Conference not later than 90 days after the first meeting of the Policy Committee;
make recommendations for the delegates of the Conference;
establish the number of delegates to be selected under section 5; and
establish an executive committee consisting of 3 members of the Policy Committee to work with delegates of the Conference.
Conference delegates
To carry out the purposes of the Conference, the Cochairs shall bring together delegates representative of the spectrum of thought in the field of autism and neurodevelopmental disorders, without regard to political affiliation or past partisan activity, who shall include—
representatives of Federal, State, and local governments;
professional people and laypeople who are working in the field of autism and neurodevelopmental disorders; and
representatives of the general public who are affected by autism spectrum disorders in the United States.
Conference administration
Administration
In administering this section, the Cochairs shall—
provide written notice to all members of the Policy Committee of each meeting, hearing, or working session of such Committee not later than 48 hours before the occurrence of such meeting, hearing, or working session;
request the cooperation and assistance of the heads of such other Federal departments and agencies as may be appropriate, including the detailing of personnel;
make available for public comment a proposed agenda prepared by the Policy Committee, which will reflect to the greatest extent possible the major issues facing the field of autism consistent with the purposes of the Conference set forth in section 3(c);
prepare and make available background materials that the Cochairs deem necessary for the use of delegates to the Conference; and
employ such additional personnel as may be necessary to carry out the provisions of this Act without regard to provisions of title 5, United States Code, governing appointments in the competitive service, and without regard to chapter 51 and subchapter III of chapter 53 of such title relating to classification and General Schedule pay rates.
Duties
In carrying out the Cochairs’s responsibilities and functions under this section, the Cochairs shall ensure that—
the proposed agenda prepared under subsection (a)(3) is published in the Federal Register not later than 30 days after such agenda is approved by the Policy Committee;
the personnel employed under subsection (a)(5) are fairly balanced in terms of points of views represented and are appointed without regard to political affiliation or previous partisan activities;
the recommendations of the Conference are not inappropriately influenced by any public official or by any special interest, but instead are the result of the independent and collective judgment of the delegates of the Conference; and
before the Conference is convened—
current and adequate statistical data (including decennial census data) and other information on autism spectrum disorders in the United States; and
such information as may be necessary to evaluate Federal programs and policies relating to autism spectrum disorders;
Gifts
The Cochairs may accept, on behalf of the United States, gifts (in cash or in kind, including voluntary and uncompensated services), which shall be available to carry out this Act. Gifts of cash shall be available in addition to amounts appropriated to carry out this title. Gifts may be earmarked by the donor or the executive committee for a specific purpose.
Records
The Cochairs shall maintain records regarding—
the sources, amounts, and uses of gifts accepted under subsection (c); and
the identity of each person receiving assistance to carry out this Act, and the amount of such assistance received by each such person.
Report of the conference
Preliminary Report
Not later than 100 days after the Conference adjourns, the Policy Committee shall prepare a preliminary report on the Conference which shall be published in the Federal Register and submitted to the chief executive officers of the States. The Policy Committee shall request that the chief executive officers of the States submit to the Policy Committee, not later than 45 days after receiving such report, their views and findings on such report.
Final Report
Not later than 6 months after the date on which the Conference adjourns, the Policy Committee shall—
prepare a final report of the Conference which shall include a compilation of the views and findings of the chief executive officers of the States received under subsection (a); and
publish in the Federal Register, and transmit to the President and to Congress, the recommendations for the administrative action and the legislation necessary to implement the recommendations contained in such report.
Status reports
Initial Status Report
Not later than 2 years after the date on which the Conference adjourns, the Surgeon General shall—
prepare a status report documenting the implementation of the recommendations contained in the final report described in section 7(b)(1); and
publish in the Federal Register, and transmit to the President and to Congress, such status report.
Subsequent Status Reports
Not later than 5 years after the date on which the Conference adjourns, and every 5 years thereafter until all recommendations in the final report described in section 7(b)(1) are achieved, the Comptroller General shall—
prepare a status report documenting the implementation of the recommendations contained in such final report; and
publish in the Federal Register, and transmit to the President and to Congress, such status report.
Definition of state
For the purposes of this Act, the term State means any of the several States, the District of Columbia, the Commonwealth of Puerto Rico, Guam, American Samoa, the Virgin Islands of the United States, or the Commonwealth of the Northern Mariana Islands.
Authorization of appropriations
Authorization
In general
There are authorized to be appropriated to carry out this Act—
such sums as may be necessary for the first fiscal year in which the Policy Committee plans the Conference and for the following fiscal year; and
such sums as may be necessary for the fiscal year in which the Conference is held.
Limitation
Any new spending authority or new authority to enter into contracts under this Act, and under which the United States is obligated to make outlays, shall be effective only to the extent, and in such amounts, as are provided in advance in appropriations Acts.
Availability of Funds
In general
Except as provided in paragraph (3), funds appropriated to carry out this Act and funds received as gifts under section 6(c) shall remain available for obligation or expenditure until the expiration of the 1-year period beginning on the date the Conference adjourns.
Unobligated funds
Except as provided in paragraph (3), any such funds neither expended nor obligated before the expiration of the 1-year period beginning on the date the Conference adjourns shall be returned to the United States Treasury.
Conference not convened
If the Conference is not convened before December 31, 2010, a trust fund shall be established and such funds shall only be available for a future Conference on Autism.