Autism Statistics, Surveillance, Research, and Epidemology Act of 1998 (ASSURE)

Summary: Autism Statistics, Surveillance, Research, and Epidemiology Act of 1998 (ASSURE) - Authorizes grants and contracts for the collection, analysis, and reporting of data on autism and pervasive developmental disabilities. 
Mandates establishment of three to five regional centers of excellence in autism and pervasive developmental disabilities epidemiology to collect and analyze information, to be established and operated through grants or cooperative agreements. 
Requires that the Centers for Disease Control and Prevention serve as the coordinating agency for autism and pervasive developmental disabilities surveillance through the establishment of a clearinghouse for data generated from the monitoring programs created by this Act. 
Mandates establishment of an Advisory Committee for Autism and Pervasive Developmental Disabilities Epidemiology Research. 
Authorizes appropriations.

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Autism Statistics, Surveillance, 
Research, and Epidemiology Act of 1998 (ASSURE)''.

SEC. 2. FINDINGS.

    The Congress makes the following findings:
            (1) Autism and other pervasive developmental disabilities 
        (fragile X syndrome, Rett's syndrome, childhood disintegrative 
        disorder, Landau-Kleffner syndrome, and pervasive developmental 
        disorders not otherwise specified) are biologically based 
        neurodevelopmental diseases which cause severe impairment in 
        cognition, language, and affective abilities.
            (2) Autism and pervasive developmental disabilities are not 
        rare; they may affect as many as one in every 500 children, and 
        more than 500,000 Americans.
            (3) There is little information on the prevalence of autism 
        and other pervasive developmental disabilities in the United 
        States. There have never been any national prevalence studies 
        in the United States, and the two studies that were conducted 
        in the 1980s examined only selected areas of the country. 
        Recent studies in Canada, Europe, and Japan suggest that the 
        prevalence of classic autism alone may be 300 percent to 400 
        percent higher than previously estimated.
            (4) The cost of caring for individuals with autism and 
        pervasive developmental disabilities is estimated at more than 
        $13,000,000,000 per year for direct costs only.
            (5) Autism is considered by many scientists to be one of 
        the most heritable of all the developmental disorders, and the 
        most likely to yield to the latest scientific advancements in 
        genetics and neurology.
            (6) The discovery of effective treatments and a cure for 
        autism will be greatly enhanced when scientists and 
        epidemiologists have an accurate understanding of the 
        prevalence and incidence of autism.
            (7) Recent research suggests that environmental factors may 
        contribute to autism. As a result, contributing causes of 
        autism, if identified, may be preventable.
            (8) Finding the answers to the causes of autism and related 
        developmental disabilities may help researchers to understand 
        other disorders, ranging from learning problems, to 
        hyperactivity, to communications deficits that affect millions 
        of Americans.

SEC. 3. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH PROGRAMS.

    (a) National Autism and Pervasive Developmental Disabilities 
Surveillance Program.--The Secretary of Health and Human Services (in 
this Act 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. 
An entity may receive such an award only if the entity is a public or 
nonprofit private entity (including health departments of States and 
political subdivisions of States, and including universities and other 
educational entities). 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.--
            (1) In general.--The Secretary, acting through the Director 
        of the Centers for Disease Control and Prevention, shall 
        (subject to the extent of amounts made available in 
        appropriations Acts) establish not less than three, and not 
        more than five, 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.
            (2) Recipients of awards for establishment of centers.--
        Centers under paragraph (1) shall be established and operated 
        through the award 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 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 provide education, training, 
                and clinical skills improvement for health 
                professionals aimed at better understanding and 
                treatment of autism and related developmental 
                disabilities; and
                    (D) 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; each program will 
                develop or extend an area of special research expertise 
                (including, but not limited to, genetics, environmental 
                exposure to contaminants, immunology, and other 
                relevant research specialty areas).

SEC. 4. CLEARINGHOUSE.

    The Secretary, acting through the Director of the Centers for 
Disease Control and Prevention, shall carry out the following:
            (1) The Centers for Disease Control and Prevention shall 
        serve as the coordinating agency for autism and pervasive 
        developmental disabilities surveillance activities through the 
        establishment of a clearinghouse for the collection and storage 
        of data generated from the monitoring programs created by this 
        Act. 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.
            (2) The Secretary, acting through the Centers for Disease 
        Control and Prevention, shall coordinate the Federal response 
        to requests for assistance from State health department 
        officials regarding potential or alleged autism or 
        developmental disability clusters.

SEC. 5. ADVISORY COMMITTEE.

    (a) In General.--The Secretary shall establish an Advisory 
Committee for Autism and Pervasive Developmental Disabilities 
Epidemiology Research (in this section referred to as the 
``Committee''). The Committee shall provide advice and recommendations 
to the Director of the Centers for Disease Control and Prevention on--
            (1) the establishment of a national autism and pervasive 
        developmental disabilities surveillance program;
            (2) the establishment of centers of excellence in autism 
        and pervasive developmental disabilities epidemiology;
            (3) methods and procedures to more effectively coordinate 
        government and non-government programs and research on autism 
        and pervasive developmental disabilities epidemiology; and
            (4) the effective operation of autism and pervasive 
        developmental disabilities epidemiology research activities.
    (b) Composition.--
            (1) In general.--The Committee shall be composed of ex 
        officio members in accordance with paragraph (2) and 11 
        appointed members in accordance with paragraph (3).
            (2) Ex officio members.--The following officials shall 
        serve as ex officio members of the Committee:
                    (A) The Director of the National Center for 
                Environmental Health.
                    (B) The Assistant Administrator of the Agency for 
                Toxic Substances and Disease Registry.
                    (C) The Director of the National Institute of Child 
                Health and Human Development.
                    (D) The Director of the National Institute of 
                Neurological Disorders and Stroke.
            (3) Appointed members.--Appointments to the Committee shall 
        be made in accordance with the following:
                    (A) Two members shall be research scientists with 
                demonstrated achievements in research related to autism 
                and related developmental disabilities. The scientists 
                shall be appointed by the Secretary in consultation 
                with the National Academy of Sciences.
                    (B) Five members shall be representatives of the 
                five national organizations whose primary emphasis is 
                on research into autism and other pervasive 
                developmental disabilities. One representative from 
                each of such organizations shall be appointed by the 
                Secretary in consultation with the National Academy of 
                Sciences.
                    (C) Two members shall be clinicians whose practice 
                is primarily devoted to the treatment of individuals 
                with autism and other pervasive developmental 
                disabilities. The clinicians shall be appointed by the 
                Secretary in consultation with the Institute of 
                Medicine and the National Academy of Sciences.
                    (D) Two members shall be individuals who are the 
                parents or legal guardians of a person or persons with 
                autism or other pervasive developmental disabilities. 
                The individuals shall be appointed by the Secretary in 
                consultation with the ex officio members under 
                paragraph (1) and the five national organizations 
                referred to in subparagraph (B).
    (c) Administrative Support; Terms of Service; Other Provisions.--
The following apply with respect to the Committee:
            (1) The Committee shall receive necessary and appropriate 
        administrative support from the Department of Health and Human 
        Services.
            (2) Members of the Committee shall be appointed for a term 
        of three years, and may serve for an unlimited number of terms 
        if reappointed.
            (3) The Committee shall meet no less than two times per 
        year.
            (4) Members of the Committee shall not receive additional 
        compensation for their service. Such members may receive 
        reimbursement for appropriate and additional expenses that are 
        incurred through service on the Committee which would not have 
        incurred had they not been a member of the Committee.

SEC. 6. REPORT TO CONGRESS.

    The Secretary shall prepare and submit to the Congress, after 
consultation and comment by the Advisory Committee, an annual report 
regarding the prevalence and incidence of autism and other pervasive 
developmental disorders, the results of research into the etiology of 
autism and other pervasive developmental disorders, public health 
responses to known or preventable causes of autism and other pervasive 
developmental disorders, and the need for additional research into 
promising lines of scientific inquiry.

SEC. 7. DEFINITION.

    For purposes of this Act, 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.

SEC. 8. AUTHORIZATION OF APPROPRIATIONS.

    For the purpose of carrying out this Act, there is authorized to be 
appropriated $7,500,000 for each of the fiscal years 1999 through 2003.