| After much efforts of the autism communities across the country, including
sending letters, making telephone calls and calling meetings, Congress
took the Advancement of Pediatric Autism Research Act, added more provisions
for other diseases, and enacted the Children's Health Act of 2000.
Some members of the AutismNews list in Illinois were instrumental in meeting
with Speaker of the House Dennis Hastert to bring attention to the bill
and the plight of autistic children.
Here is the Act as written, followed by links to how it is being used. |
TITLE I--AUTISM
Sec.101.Expansion, intensification, and coordination of activities of National Institutes of Health with respect to research on autism.Year 2002 progress reports
Sec.102.Developmental disabilities surveillance and research programs.
Sec.103.Information and education.
Sec.104.Inter-agency Autism Coordinating Committee.
Sec.105.Report to Congress.
TITLE I--AUTISM
`EXPANSION, INTENSIFICATION, AND COORDINATION OF ACTIVITIES OF NATIONAL INSTITUTES OF HEALTH WITH RESPECT TO RESEARCH ON AUTISM
`SEC. 409C. (a) IN GENERAL-`(1) EXPANSION OF ACTIVITIES- The Director of NIH (in this section referred to as the `Director') shall expand, intensify, and coordinate the activities of the National Institutes of Health with respect to research on autism.`(b) CENTERS OF EXCELLENCE-
`(2) ADMINISTRATION OF PROGRAM; COLLABORATION AMONG AGENCIES- The Director shall carry out this section acting through the Director of the National Institute of Mental Health and in collaboration with any other agencies that the Director determines appropriate.`(1) IN GENERAL- The Director shall under subsection (a)(1) make awards of grants and contracts to public or nonprofit private entities to pay all or part of the cost of planning, establishing, improving, and providing basic operating support for centers of excellence regarding research on autism.`(c) FACILITATION OF RESEARCH- The Director shall under subsection (a)(1) provide for a program under which samples of tissues and genetic materials that are of use in research on autism are donated, collected, preserved, and made available for such research. The program shall be carried out in accordance with accepted scientific and medical standards for the donation, collection, and preservation of such samples.
`(2) RESEARCH- Each center under paragraph (1) shall conduct basic and clinical research into autism. Such research should include investigations into the cause, diagnosis, early detection, prevention, control, and treatment of autism. The centers, as a group, shall conduct research including the fields of developmental neurobiology, genetics, and psychopharmacology.
`(3) SERVICES FOR PATIENTS-
`(A) IN GENERAL- A center under paragraph (1) may expend amounts provided under such paragraph to carry out a program to make individuals aware of opportunities to participate as subjects in research conducted by the centers.
`(B) REFERRALS AND COSTS- A program under subparagraph (A) may, in accordance with such criteria as the Director may establish, provide to the subjects described in such subparagraph, referrals for health and other services, and such patient care costs as are required for research.
`(C) AVAILABILITY AND ACCESS- The extent to which a center can demonstrate availability and access to clinical services shall be considered by the Director in decisions about awarding grants to applicants which meet the scientific criteria for funding under this section.
`(4) COORDINATION OF CENTERS; REPORTS- The Director shall, as appropriate, provide for the coordination of information among centers under paragraph (1) and ensure regular communication between such centers, and may require the periodic preparation of reports on the activities of the centers and the submission of the reports to the Director.
`(5) ORGANIZATION OF CENTERS- Each center under paragraph (1) shall use the facilities of a single institution, or be formed from a consortium of cooperating institutions, meeting such requirements as may be prescribed by the Director.
`(6) NUMBER OF CENTERS; DURATION OF SUPPORT-
`(A) IN GENERAL- The Director shall provide for the establishment of not less than five centers under paragraph (1).
`(B) DURATION- Support for a center established under paragraph (1) may be provided under this section for a period of not to exceed 5 years. Such period may be extended for one or more additional periods not exceeding 5 years if the operations of such center have been reviewed by an appropriate technical and scientific peer review group established by the Director and if such group has recommended to the Director that such period should be extended.
`(d) PUBLIC INPUT- The Director shall under subsection (a)(1) provide for means through which the public can obtain information on the existing and planned programs and activities of the National Institutes of Health with respect to autism and through which the Director can receive comments from the public regarding such programs and activities.
(1) IN GENERAL- The Secretary of Health and Human Services (in this section referred to as the `Secretary'), acting through the Director of the Centers for Disease Control and Prevention, may make awards of grants and cooperative agreements for the collection, analysis, and reporting of data on autism and pervasive developmental disabilities. In making such awards, the Secretary may provide direct technical assistance in lieu of cash.(b) CENTERS OF EXCELLENCE IN AUTISM AND PERVASIVE DEVELOPMENTAL DISABILITIES EPIDEMIOLOGY-
(2) ELIGIBILITY- To be eligible to receive an award under paragraph (1) an entity shall be a public or nonprofit private entity (including health departments of States and political subdivisions of States, and including universities and other educational entities).
(1) IN GENERAL- The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall establish not less than three regional centers of excellence in autism and pervasive developmental disabilities epidemiology for the purpose of collecting and analyzing information on the number, incidence, correlates, and causes of autism and related developmental disabilities.(c) CLEARINGHOUSE- The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall carry out the following:
(2) RECIPIENTS OF AWARDS FOR ESTABLISHMENT OF CENTERS- Centers under paragraph (1) shall be established and operated through the awarding of grants or cooperative agreements to public or nonprofit private entities that conduct research, including health departments of States and political subdivisions of States, and including universities and other educational entities.
(3) CERTAIN REQUIREMENTS- An award for a center under paragraph (1) may be made only if the entity involved submits to the Secretary an application containing such agreements and information as the Secretary may require, including an agreement that the center involved will operate in accordance with the following:
(A) The center will collect, analyze, and report autism and pervasive developmental disabilities data according to guidelines prescribed by the Director, after consultation with relevant State and local public health officials, private sector developmental disability researchers, and advocates for those with developmental disabilities.
(B) The center will assist with the development and coordination of State autism and pervasive developmental disabilities surveillance efforts within a region.
(C) The center will identify eligible cases and controls through its surveillance systems and conduct research into factors which may cause autism and related developmental disabilities.
(D) The center will develop or extend an area of special research expertise (including genetics, environmental exposure to contaminants, immunology, and other relevant research specialty areas).
(1) The Secretary shall establish a clearinghouse within the Centers for Disease Control and Prevention for the collection and storage of data generated from the monitoring programs established by this title. Through the clearinghouse, such Centers shall serve as the coordinating agency for autism and pervasive developmental disabilities surveillance activities. The functions of such a clearinghouse shall include facilitating the coordination of research and policy development relating to the epidemiology of autism and other pervasive developmental disabilities.(d) DEFINITION- In this title, the term `State' means each of the several States, the District of Columbia, the Commonwealth of Puerto Rico, American Samoa, Guam, the Commonwealth of the Northern Mariana Islands, the Virgin Islands, and the Trust Territory of the Pacific Islands.
(2) The Secretary shall coordinate the Federal response to requests for assistance from State health department officials regarding potential or alleged autism or developmental disability clusters.
(1) IN GENERAL- The Committee shall be composed of the Directors of such national research institutes, of the Centers for Disease Control and Prevention, and of such other agencies and such other officials as the Secretary determines appropriate.(c) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE; OTHER PROVISIONS- The following shall apply with respect to the Committee:
(2) ADDITIONAL MEMBERS- If determined appropriate by the Secretary, the Secretary may appoint to the Committee--
(A) parents or legal guardians of individuals with autism or other pervasive developmental disorders; and
(B) representatives of other governmental agencies that serve children with autism such as the Department of Education.
(1) The Committee shall receive necessary and appropriate administrative support from the Department of Health and Human Services.
(2) Members of the Committee appointed under subsection (b)(2)(A) shall serve for a term of 3 years, and may serve for an unlimited number of terms if reappointed.
(3) The Committee shall meet not less than two times each year.
However, it appears that no organization has taken responsibility for
section 103 of the Act to provide information and education on autism to
health professionals and the general public. NIH says it does not
do that, and would ask Health Resources and Services Administration to
provide information and education. The status of these efforts is
not known at the time of this posting.
| Official 2002 report in .pdf | www.nimh.nih.gov/events/autismreport.pdf |
| (same in html) | http://www.google.com/search?q=cache:hEz7FOWwg9AC:www.nimh.nih.gov/events/autismreport.pdf+&hl=en&ie=UTF-8 |
| testimony to Congress | April 18, 2002 HHS report to Congress by Foote |
| CDC Autism Info Center | http://www.cdc.gov/ncbddd/dd/ddautism.htm |
| Meeting attendees-2001 | http://www.nimh.nih.gov/events/iacclisting.cfm |