[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[S. 286 Enrolled Bill (ENR)]
S.286
One Hundred Eighth Congress
of the
United States of America
AT THE FIRST SESSION
Begun and held at the City of Washington on Tuesday,
the seventh day of January, two thousand and three
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.
Speaker of the House of Representatives.
Vice President of the United States and
President of the Senate.