[Congressional Record Volume 149, Number 163 (Tuesday, November 11, 2003)]
[Senate]
[Pages S14459-S14461]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




  BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES PREVENTION ACT OF 2003

  Mr. FRIST. Mr. President, I ask unanimous consent that the Senate 
proceed to the immediate consideration of calendar item No. 369, S. 
286.
  The PRESIDING OFFICER. The clerk will report the bill by title.
  The legislative clerk read as follows:

       A bill (S. 286) to revise and extend the Birth Defects 
     Prevention Act of 1998.

  There being no objection, the Senate proceeded to consider the 
bill which had been reported from the Committee on Health, Education, 
Labor, and Pensions, with an amendment to strike all after the enacting 
clause and inserting in lieu thereof the following:

       [Strike the part shown in black brackets and insert the 
     part shown in italic.]

                                 S. 286

       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)--

[[Page S14460]]

       [(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) in subsection (e)--
       [(A) by inserting ``, including section 444 of the General 
     Education Provisions Act,'' after ``privacy of information''; 
     and
       [(B) by inserting before the period the following: ``, 
     except that the Centers for Disease Control and Prevention 
     shall have access to information under section 444(b)(1)(F) 
     of such Act solely for purposes of carrying out subsection 
     (a)(2) of this section and shall otherwise comply with all 
     other requirements of such section 444'';
       [(5) by redesignating subsections (c), (d), and (e) as 
     subsections (b), (c), and (d), respectively;
       [(6) 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
       [(7) 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.

       [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''.]

     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

[[Page S14461]]

       (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.

  Mr. FRIST. Mr. President, I ask unanimous consent that the amendment 
which is at the desk be agreed to; the committee-reported substitute, 
as amended, be agreed to, that the bill, as amended, be read a third 
time and passed, the motion to reconsider be laid upon the table en 
bloc; and that any statements relating to the bill be printed in the 
Record.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The amendment (No. 2149) was agreed to, as follows:


                           amendment no. 2149

                (Purpose: In the nature of a substitute)

       Strike all after the enacting clause and insert the 
     following:

     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.

  The committee amendment in the nature of a substitute, as amended, 
was agreed to.
  The bill was ordered to be engrossed for a third reading and was read 
the third time.
  The bill (S. 286), as amended, was passed.

                          ____________________