[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[S. 286 Engrossed in Senate (ES)]

  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
108th CONGRESS
  1st Session
                                 S. 286

_______________________________________________________________________

                                 AN ACT


 
     To revise and extend the Birth Defects Prevention Act of 1998.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

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.

            Passed the Senate November 11, 2003.

            Attest:

                                                             Secretary.
108th CONGRESS

  1st Session

                                 S. 286

_______________________________________________________________________

                                 AN ACT

     To revise and extend the Birth Defects Prevention Act of 1998.