108TH CONGRESS

1ST SESSION S. 286

AN ACT

To revise and extend the Birth Defects Prevention Act of

1998.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. SHORT TITLE.

4 This Act may be cited as the ‘‘Birth Defects and De5 velopmental Disabilities Prevention Act of 2003’’.
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1 SEC. 2. NATIONAL CENTER ON BIRTH DEFECTS AND DE2 VELOPMENTAL DISABILITIES.

3 Section 317C of the Public Health Service Act (42

4 U.S.C. 247b–4) is amended—

5 (1) in subsection (a)(2)—

6 (A) in subparagraph (A)—

7 (i) by striking ‘‘and developmental

8 disabilities’’ and inserting ‘‘, developmental

9 disabilities, and disabilities and health’’;

10 and

11 (ii) by striking ‘‘subsection (d)(2)’’

12 and inserting ‘‘subsection (c)(2)’’;

13 (B) in subparagraph (B), by striking

14 ‘‘and’’ at the end;

15 (C) in subparagraph (C), by striking the

16 period and inserting a semicolon; and

17 (D) by adding at the end the following:

18 ‘‘(D) to conduct research on and to pro19 mote the prevention of such defects and disabil20 ities, and secondary health conditions among in21 dividuals with disabilities; and

22 ‘‘(E) to support a National Spina Bifida

23 Program to prevent and reduce suffering from

24 the Nation’s most common permanently dis25 abling birth defect.’’;

26 (2) by striking subsection (b);
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1 (3) in subsection (d)—

2 (A) by striking paragraph (1) and insert3 ing the following:

4 ‘‘(1) contains information regarding the inci5 dence and prevalence of birth defects, developmental

6 disabilities, and the health status of individuals with

7 disabilities and the extent to which these conditions

8 have contributed to the incidence and prevalence of

9 infant mortality and affected quality of life;’’;

10 (B) in paragraph (3), by inserting ‘‘, devel11 opmental disabilities, and secondary health con12 ditions among individuals with disabilities’’

13 after ‘‘defects’’;

14 (C) in paragraph (4), by striking ‘‘and’’ at

15 the end;

16 (D) by redesignating paragraph (5) as

17 paragraph (7); and

18 (E) by inserting after paragraph (4) the

19 following:

20 ‘‘(5) contains information on the incidence and

21 prevalence of individuals living with birth defects

22 and disabilities or developmental disabilities, infor23 mation on the health status of individuals with dis24 abilities, information on any health disparities expe25 rienced by such individuals, and recommendations
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1 for improving the health and wellness and quality of

2 life of such individuals;

3 ‘‘(6) contains a summary of recommendations

4 from all birth defects research conferences sponsored

5 by the Centers for Disease Control and Prevention,

6 including conferences related to spina bifida; and’’;

7 (4) by redesignating subsections (c), (d), and

8 (e) as subsections (b), (c), and (d), respectively;

9 (5) by inserting after subsection (d) (as so re10 designated), the following:

11 ‘‘(e) ADVISORY COMMITTEE.—Notwithstanding any

12 other provision of law, the members of the advisory com13 mittee appointed by the Director of the National Center

14 for Environmental Health that have expertise in birth de15 fects, developmental disabilities, and disabilities and

16 health shall be transferred to and shall advise the National

17 Center on Birth Defects and Developmental Disabilities

18 effective on the date of enactment of the Birth Defects

19 and Developmental Disabilities Prevention Act of 2003.’’;

20 and

21 (6) in subsection (f), by striking ‘‘$30,000,000’’

22 and all that follows and inserting ‘‘such sums as

23 may be necessary for each of fiscal years 2003

24 through 2007.’’.
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1 SEC. 3. TECHNICAL CORRECTIONS FOR STATE COUNCILS

2 ON DEVELOPMENTAL DISABILITIES.

3 (a) IN GENERAL.—Section 122(a) of the Develop4 mental Disabilities Assistance and Bill of Rights Act of

5 2000 (42 U.S.C. 15022(a)) is amended—

6 (1) in paragraph (3)(A)(ii), by inserting before

7 the period the following: ‘‘, the amount received by

8 the State for the previous year, or the amount of

9 Federal appropriations received in fiscal year 2000,

10 2001, or 2002, whichever is greater’’; and

11 (2) in paragraph (4)(A)(ii), by inserting before

12 the period the following: ‘‘, the amount received by

13 the State for the previous year, or the amount of

14 Federal appropriations received in fiscal year 2000,

15 2001, or 2002, whichever is greater’’.

16 (b) EFFECTIVE DATE.—The amendments made by

17 subsection (a) shall take effect on October 1, 2003 and

18 apply to allotments beginning in fiscal year 2004.

19 SEC. 4. REPORT ON SURVEILLANCE ACTIVITIES.

20 Not later than 18 months after the date of enactment

21 of this Act, the Secretary of Health and Human Services

22 jointly with the Secretary of Education shall submit to the

23 Committee on Health, Education, Labor, and Pensions of

24 the Senate and the Committee on Energy and Commerce

25 and Committee on Education and the Workforce of the

26 House of Representatives a report concerning surveillance
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1 activities under section 102 of the Children’s Health Act

2 of 2000 (Public Law 106-310), specifically including—

3 (1) a description of the current grantees under

4 the National Autism and Pervasive Developmental

5 Disabilities Surveillance Program and the Centers of

6 Excellence in Autism and Pervasive Developmental

7 Disabilities the data collected, analyzed, and re8 ported under such grants, the sources of such data,

9 and whether such data was obtained with parental

10 consent as required under the Family Educational

11 Rights and Privacy Act of 1974 (20 U.S.C. 1232g);

12 (2) a description of current sources of data for

13 the surveillance of autism and developmental disabil14 ities and the methods for obtaining such data, in15 cluding whether such data was obtained with paren16 tal or patient consent for disclosure;

17 (3) an analysis of research on autism and devel18 opmental disabilities with respect to the methods of

19 collection and reporting, including whether such re20 search was obtained with parental or patient consent

21 for disclosure;

22 (4) an analysis of the need to add education

23 records in the surveillance of autism and other devel24 opmental disabilities, including the methodological

25 and medical necessity for such records and the
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1 rights of parents and patients in the use of edu2 cation records (in accordance with the Family Edu3 cational Rights and Privacy Act of 1974);

4 (5) a description of the efforts taken by the

5 Centers for Disease Control and Prevention to uti6 lize education records in conducting the surveillance

7 program while obtaining parental or patient consent

8 for such education records, including the outcomes

9 of such efforts;

10 (6) a description of the challenges provided to

11 obtaining education records (in the absence of pa12 rental or patient consent) for the purpose of obtain13 ing additional surveillance data for autism and other

14 developmental disabilities; and

15 (7) a description of the manner in which such

16 challenges can be overcome, including efforts to edu17 cate parents, increase confidence in the privacy of

18 the surveillance program, and increase the rate of

19 parental or patient consent, and including specific

20 quantitative and qualitative justifications for any

21 recommendations for changes to existing statutory
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1 authority, including the Family Educational Rights

2 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.