A bill to revise and extend the Birth Defects Prevention Act of 1998.

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Birth Defects and Developmental 
Disabilities Prevention Act of 2003''.
SEC. 2. NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL 
DISABILITIES.
    Section 317C of the Public Health Service Act (42 U.S.C. 247b-4) is 
amended--
        (1) in subsection (a)(2)--
            (A) in subparagraph (A)--
                (i) by striking ``and developmental disabilities'' and 
            inserting ``, developmental disabilities, and disabilities 
            and health''; and
                (ii) by striking ``subsection (d)(2)'' and inserting 
            ``subsection (c)(2)'';
            (B) in subparagraph (B), by striking ``and'' at the end;
            (C) in subparagraph (C), by striking the period and 
        inserting a semicolon; and
            (D) by adding at the end the following:
            ``(D) to conduct research on and to promote the prevention 
        of such defects and disabilities, and secondary health 
        conditions among individuals with disabilities; and
            ``(E) to support a National Spina Bifida Program to prevent 
        and reduce suffering from the Nation's most common permanently 
        disabling birth defect.'';
        (2) by striking subsection (b);
        (3) in subsection (d)--
            (A) by striking paragraph (1) and inserting the following:
        ``(1) contains information regarding the incidence and 
    prevalence of birth defects, developmental disabilities, and the 
    health status of individuals with disabilities and the extent to 
    which these conditions have contributed to the incidence and 
    prevalence of infant mortality and affected quality of life;'';
            (B) in paragraph (3), by inserting ``, developmental 
        disabilities, and secondary health conditions among individuals 
        with disabilities'' after ``defects'';
            (C) in paragraph (4), by striking ``and'' at the end;
            (D) by redesignating paragraph (5) as paragraph (7); and
            (E) by inserting after paragraph (4) the following:
        ``(5) contains information on the incidence and prevalence of 
    individuals living with birth defects and disabilities or 
    developmental disabilities, information on the health status of 
    individuals with disabilities, information on any health 
    disparities experienced by such individuals, and recommendations 
    for improving the health and wellness and quality of life of such 
    individuals;
        ``(6) contains a summary of recommendations from all birth 
    defects research conferences sponsored by the Centers for Disease 
    Control and Prevention, including conferences related to spina 
    bifida; and'';
        (4) by redesignating subsections (c), (d), and (e) as 
    subsections (b), (c), and (d), respectively;
        (5) by inserting after subsection (d) (as so redesignated), the 
    following:
    ``(e) Advisory Committee.--Notwithstanding any other provision of 
law, the members of the advisory committee appointed by the Director of 
the National Center for Environmental Health that have expertise in 
birth defects, developmental disabilities, and disabilities and health 
shall be transferred to and shall advise the National Center on Birth 
Defects and Developmental Disabilities effective on the date of 
enactment of the Birth Defects and Developmental Disabilities 
Prevention Act of 2003.''; and
        (6) in subsection (f), by striking ``$30,000,000'' and all that 
    follows and inserting ``such sums as may be necessary for each of 
    fiscal years 2003 through 2007.''.
SEC. 3. TECHNICAL CORRECTIONS FOR STATE COUNCILS ON DEVELOPMENTAL 
DISABILITIES.
    (a) In General.--Section 122(a) of the Developmental Disabilities 
Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15022(a)) is 
amended--
        (1) in paragraph (3)(A)(ii), by inserting before the period the 
    following: ``, the amount received by the State for the previous 
    year, or the amount of Federal appropriations received in fiscal 
    year 2000, 2001, or 2002, whichever is greater''; and
        (2) in paragraph (4)(A)(ii), by inserting before the period the 
    following: ``, the amount received by the State for the previous 
    year, or the amount of Federal appropriations received in fiscal 
    year 2000, 2001, or 2002, whichever is greater''.
    (b) Effective Date.--The amendments made by subsection (a) shall 
take effect on October 1, 2003 and apply to allotments beginning in 
fiscal year 2004.

SEC. 4. REPORT ON SURVEILLANCE ACTIVITIES.

    Not later than 18 months after the date of enactment of this Act, 
the Secretary of Health and Human Services jointly with the Secretary 
of Education shall submit to the Committee on Health, Education, Labor, 
and Pensions of the Senate and the Committee on Energy and Commerce and 
Committee on Education and the Workforce of the House of 
Representatives a report concerning surveillance activities under 
section 102 of the Children's Health Act of 2000 (Public Law 106-310), 
specifically including--
        (1) a description of the current grantees under the National 
    Autism and Pervasive Developmental Disabilities Surveillance 
    Program and the Centers of Excellence in Autism and Pervasive 
    Developmental Disabilities, the data collected, analyzed, and 
    reported under such grants, the sources of such data, and whether 
    such data was obtained with parental consent as required under the 
    Family Educational Rights and Privacy Act of 1974 (20 U.S.C. 
    1232g);
        (2) a description of current sources of data for the 
    surveillance of autism and developmental disabilities and the 
    methods for obtaining such data, including whether such data was 
    obtained with parental or patient consent for disclosure;
        (3) an analysis of research on autism and developmental 
    disabilities with respect to the methods of collection and 
    reporting, including whether such research was obtained with 
    parental or patient consent for disclosure;
        (4) an analysis of the need to add education records in the 
    surveillance of autism and other developmental disabilities, 
    including the methodological and medical necessity for such records 
    and the rights of parents and patients in the use of education 
    records (in accordance with the Family Educational Rights and 
    Privacy Act of 1974);
        (5) a description of the efforts taken by the Centers for 
    Disease Control and Prevention to utilize education records in 
    conducting the surveillance program while obtaining parental or 
    patient consent for such education records, including the outcomes 
    of such efforts;
        (6) a description of the challenges provided to obtaining 
    education records (in the absence of parental or patient consent) 
    for the purpose of obtaining additional surveillance data for 
    autism and other developmental disabilities; and
        (7) a description of the manner in which such challenges can be 
    overcome, including efforts to educate parents, increase confidence 
    in the privacy of the surveillance program, and increase the rate 
    of parental or patient consent, and including specific quantitative 
    and qualitative justifications for any recommendations for changes 
    to existing statutory authority, including the Family Educational 
    Rights and Privacy Act of 1974.

                               Speaker of the House of Representatives.

                            Vice President of the United States and    
                                               President of the Senate.

Summary: Birth Defects and Developmental Disabilities Prevention Act of 2003 - Amends the Public Health Service Act concerning the National Center on Birth Defects and Developmental Disabilities (Center) to add disabilities and health to categories of data which the Secretary of Heath and Human Services is directed to collect, analyze, and make available. Requires the Secretary to conduct research on and promote the prevention of birth defects and disabilities and to support a National Spina Bifida Program to prevent and reduce suffering from the nation's most common permanently disabling birth defect. Modifies Center reporting requirements, including requiring such report to contain information on: (1) individuals living with birth defects and disabilities or developmental disabilities, and recommendations for improving the health and quality of life of such individuals. And (2) recommendations from all birth defects research conferences sponsored by the Centers for Disease Control and Prevention, including conferences related to spina bifida. Requires that the members of the advisory committee appointed by the Director of the National Center for Environmental Health that have expertise in birth defects, developmental disabilities, and disabilities and health be transferred to and advise the Center. Authorizes appropriations through FY 2007 for the Center. Amends the Developmental Disabilities Assistance and Bill of Rights Act of 2000 to revise appropriation allotment provisions for State developmental disabilities councils. Directs the Secretary and the Secretary of Education to jointly report on specified surveillance activities under the Children's Health Act of 2000 respecting autism and other developmental disabilities.