[Senate Report 108-188]
[From the U.S. Government Publishing Office]
Calendar No. 369
108th Congress Report
SENATE
1st Session 108-188
======================================================================
BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES PREVENTION ACT OF 2003
_______
November 6, 2003.--Ordered to be printed
_______
Mr. Gregg, from the Committee on Health, Education, Labor, and
Pensions, submitted the following
R E P O R T
[To accompany S. 286]
The Committee on Health, Education, Labor, and Pensions, to
which was referred the bill (S. 286) to revise and extend the
Birth Defects Prevention Act of 1998, having considered the
same, reports favorably thereon with an amendment in the nature
of a substitute and recommends that the bill (as amended) do
pass.
CONTENTS
Page
I. Purpose and need for legislation.................................1
II. Summary..........................................................2
III. History of legislation and votes in committee....................2
IV. Explanation of bill and committee views..........................2
V. Cost estimate....................................................3
VI. Regulatory impact statement......................................5
VII. Application of law to the legislative branch.....................5
VIII.Section-by-section analysis......................................5
IX. Changes in existing law..........................................6
I. Purpose and Need for Legislation
There is still much work to be done to improve the health
of all Americans by preventing birth defects and developmental
disabilities in children. Of the four million babies born each
year in the United States, approximately 150,000 are born with
one or more serious birth defects. Birth defects are the
leading cause of infant mortality and responsible for about 30
percent of all pediatric hospital admissions. The lifetime
economic costs of caring for infants born in a single year with
a serious birth defect have been estimated at $8 billion. The
causes of about 70 percent of birth defects are still unknown.
About 17 percent of U.S. children under 18 years of age
have a developmental disability. Developmental disabilities are
a diverse group of physical, cognitive, psychological, sensory,
and speech impairments that begin anytime during development up
to 18 years of age. In most instances, the cause of the
disability is not known. State and Federal education
departments spend about $36 billion each year on special
education programs for individuals with developmental
disabilities who are 3-21 years old.
In 1998, Congress passed the Birth Defects Prevention Act
(P.L. 105-168), which authorized CDC to provide surveillance,
research, and services aimed at the prevention of birth
defects. Then Congress passed the Children's Health Act of 2000
(P.L. 106-310), which established the National Center on Birth
Defects and Developmental Disabilities at CDC to focus on
improving the health of children by preventing birth defects
and developmental disabilities. Authorization of appropriations
for the National Center on Birth Defects and Developmental
Disabilities expired in fiscal year 2002.
II. Summary
S. 286, the Birth Defects and Developmental Disabilities
Prevention Act, reauthorizes the activities of the National
Center on Birth Defects and Developmental Disabilities (NCBDDD)
at the Centers for Disease Control and Prevention (CDC). The
legislation authorizes the full scope of activities being
conducted by NCBDDD.
In addition, the Birth Defects and Developmental
Disabilities Prevention Act amends the Family Educational
Rights and Privacy Act to authorize the CDC to collect data
from educational records necessary for data collection on
developmental disabilities (such as autism and fetal alcohol
syndrome).
III. History of Legislation and Votes in Committee
On February 4, 2003, Senator Bond, for himself and Senators
Dodd, Frist and Kennedy, introduced S. 286, to revise and
extend the Birth Defects Prevention Act of 1998.
On February 12, 2003, the committee held an executive
session to consider S. 286. The committee approved S. 286 by
unanimous voice vote.
IV. Explanation of Bill and Committee Views
The Committee sought to authorize the full scope of
activities for the National Center on Birth Defects and
Developmental Disabilities, including data collection and
analysis on not only birth defects, but also developmental
disabilities.
In addition, the committee establishes a new national
program on Spina Bifida at the CDC, recognizing the importance
of addressing this condition. Spina Bifida is the most common,
permanently disabling birth defect consistent with life and it
is largely preventable. To date, very few Federal efforts have
been directed toward surveillance, prevention, basic research
and quality of life interventions for Spina Bifida. The
committee recognizes critical advances in the practice of
medicine and public health interventions that could prevent
this tragic disease or intervene early enough during pregnancy
to mitigate its effects.
The committee recognizes the importance of allowing the CDC
to access educational records as part of its research on
developmental disabilities. The bill amends the Family
Educational Rights and Privacy Act to allow the CDC to access
educational records for public health research related to
developmental disabilities such as autism.
The committee is pleased that the congressionally mandated
Spina Bifida Research Conference, sponsored by the CDC,
occurred in May this year and the bill provides that
recommendations arising from this conference be included in the
Secretary's report on the activities of the NCBDDD.
The bill improves the ability of the NCBDDD to obtain
technical, scientific and stakeholder input by shifting the
birth defects expertise from the Advisory Committee at the
National Center for Environmental Health to an Advisory
Committee for the NCBDDD.
The bill corrects a formula error affecting State
Developmental Disabilities Councils.
V. Cost Estimate
U.S. Congress,
Congressional Budget Office,
Washington, DC, March 5, 2003.
Hon. Judd Gregg,
Chairman, Committee on Health, Education, Labor, and Pensions, U.S.
Senate, Washington, DC.
Dear Mr. Chairman: The Congressional Budget Office has
prepared the enclosed cost estimate for S. 286, the Birth
Defects and Developmental Disabilities Prevention Act of 2003.
If you wish further details on this estimate, we will be
pleased to provide them. The CBO staff contact is Jeanne De Sa.
Sincerely,
Douglas Holtz-Eakin,
Director.
Enclosure.
S. 286--Birth Defects and Developmental Disabilities Prevention Act of
2003
Summary: S. 286 would amend the Public Health Service Act
to reauthorize and clarify activities conducted by the National
Center on Birth Defects and Developmental Disabilities of the
Centers for Disease Control and Prevention (CDC). The bill
would authorize the appropriation of such sums as may be
necessary for fiscal years 2003 through 2007 for that purpose.
(The previous authorization for the National Center on Birth
Defects and Developmental Disabilities expired at the end of
fiscal year 2002.) Additionally, the bill would change the
allotment formula for grants to State Councils on Developmental
Disabilities.
Assuming appropriation of the necessary amounts (including
annual adjustments for anticipated inflation), CBO estimates
that implementing S. 286 would cost $32 million in 2004 and
$381 million over the 2004-2008 period. (Without such inflation
adjustments, the change in outlays would total $369 million
over the 2004-2008 period.) Enacting this legislation would not
affect direct spending or revenues.
S. 286 contains no intergovernmental or private-sector
mandates as defined in the Unfunded Mandates Reform Act (UMRA)
and would impose no costs on state, local, or tribal
governments.
Estimated cost to the Federal Government: The estimated
budgetary impact of S. 286 is shown in the following table. The
costs of this legislation fall within budget function 550
(health).
----------------------------------------------------------------------------------------------------------------
By fiscal year, in millions of dollars--
-----------------------------------------------------
2003 2004 2005 2006 2007 2008
----------------------------------------------------------------------------------------------------------------
SPENDING SUBJECT TO APPROPRIATION
CDC Spending Under Current Law for Birth Defects and
Developmental Disabilities:
Budget Authority \1\.................................. 99 0 0 0 0 0
Estimated Outlays..................................... 31 44 18 4 2 0
Proposed Changes \2\:
Estimated Authorization Level......................... 0 101 103 106 108 0
Estimated Outlays..................................... 0 32 77 97 103 72
CDC Spending Under S. 286 for Birth Defects and
Developmental Disabilities:
Estimated Authorization Level \1\..................... 99 101 103 106 108 0
Estimated Outlays..................................... 31 76 95 101 105 72
----------------------------------------------------------------------------------------------------------------
\1\ The 2003 figure is the amount appropriated for that year for activities under CDC's National Center for
Birth Defects and Developmental Disabilities program.
\2\ The amounts shown reflect adjustments for anticipated inflation for those activities for which the bill
would authorize such sums as necessary. Without such inflation adjustments, the five-year changes in
authorization levels would total $404 million (instead of $418 million) and the changes in outlays would total
$369 million (instead of $381 million).
Basis of estimate: For this estimate, CBO assumes S. 286
will be enacted by the end of this fiscal year, and that the
necessary amounts will be appropriated for each year.
CDC's National Center on Birth Defects and Developmental
Disabilities conducts a range of data collection and research
activities related to the prevention of birth defects and
developmental disabilities. Those activities include
surveillance and monitoring of birth defects and developmental
disabilities such as mental retardation, cerebral palsy, and
autism, research on the causes of birth defects, and an
educational campaign to increase the consumption of folic acid
to prevent spina bifida and anencephaly. Other activities focus
on surveillance and prevention of Fetal Alcohol Syndrome and
identification of ways to address the public health needs of
persons with disabilities. The center's appropriation for
fiscal year 2003 is $99 million.
S. 286 would reauthorize the center's activities for the
2003-2007 period and would authorize appropriations of such
sums as may be necessary for that purpose. Additionally, the
bill would clarify that the center's activities should
encompass data collection on disabilities and health, research
on the prevention of birth defects and disabilities and the
prevention of secondary health conditions among people with
disabilities, and support for a National Spina Bifida program.
According to CDC, the center currently conducts such
activities. Therefore, the clarifications in S. 286 would not
result in a broader set of authorized activities.
Based on the amount appropriated for the center in fiscal
year 2003 and taking into account anticipated inflation, CBO
estimates that the center would require appropriations of $418
million for fiscal years 2004 and 2007. Assuming appropriation
of such amounts and spending consistent with historical outlay
rates, CBO estimates that implementing the bill would result in
outlays of $32 million in 2004 and $381 million over the 2004-
2008 period.
S. 286 also would make a technical change to the allotment
formula for grants to State Councils on Developmental
Disabilities, a program in which states use federal grant funds
to provide services to individuals with disabilities. CBO
estimates this change would have no effect on federal spending.
Intergovernmental and private-sector impact: S. 286
contains no intergovernmental or private-sector mandates as
defined in UMRA and would impose no costs on state, local, or
tribal governments.
Previous CBO estimate: On February 11, 2003, CBO
transmitted a cost estimate for H.R. 398, the Birth Defects and
Developmental Disabilities Act of 2003, as ordered reported by
the House Committee on Energy and Commerce on January 28, 2003.
The bills are identical. CBO estimated that H.R. 398 would
increase by $29 million in 2004 and $350 million over the 2004-
2008 period--$3 million and $31 million lower, respectively,
than the current estimate. The difference is due entirely to
higher projections of spending under current law as a result of
enactment of the omnibus appropriations act (P.L. 108-7).
Estimate prepared by: Federal Costs: Jeanne De Sa; Impact
on State, Local, and Tribal Governments: Leo Lex; and Impact on
the Private Sector: Samuel Kina.
Estimate approved by: Robert A. Sunshine, Assistant
Director for Budget Analysis.
VI. Regulatory Impact Statement
The committee has determined that there will be minimal
increases in the regulatory burden imposed by this bill.
VII. Application of Law to the Legislative Branch
The Committee has determined that there is no legislative
impact.
VIII. Section-by-Section Analysis
Section 1. Short title
Section 1 provides the short title of the bill, the Birth
Defects and Developmental Disabilities Prevention Act of 2003.
Section 2. National Center on Birth Defects and Developmental
Disabilities
Section 2 amends section 317C of the Public Health Service
Act to authorize the National Center on Birth Defects and
Developmental Disabilities to collect, analyze, and make
available data on disabilities and health in addition to birth
defects and developmental disabilities. In addition, NCBDDD has
authority to support a National Spina Bifida Program to promote
prevention and enhance the quality of life for those living
with Spina Bifida. This section gives NCBDDD authority to
conduct research and programs on the prevention of secondary
conditions and the promotion of health and wellness in
individuals living with disabilities. It amends the Family
Educational Rights and Privacy Act to authorize NCBDDD to
collect data from educational records that are necessary to
conduct surveillance research on developmental disabilities
while protecting the privacy of individuals and their families.
This section also requires a biennial report to relevant
congressional committees on the activities of the Center on
Birth Defects and Developmental Disabilities including birth
defects, developmental disabilities and disabilities and
health. This report must include a summary of the
recommendations from the 2003 Research Conference on Spina
Bifida sponsored by the CDC, in collaboration with the Agency
for Healthcare Research and Quality and individual institutes
at the National Institutes of Health. Finally, this section
transfers members of the Advisory Committee to the Director of
the National Center for Environmental Health that have
expertise in birth defects, developmental disabilities and
disabilities and health to the Center on Birth Defects and
Developmental Disabilities. The membership includes scientific
experts, state health department representatives and parents of
a child with a birth defect or groups concerned with birth
defects, developmental disabilities and individuals living with
a disability. Authorization of appropriations for the NCBDDD is
permitted at a level of such sums as may be necessary for each
of fiscal years 2003 through 2007.
Section 3. Technical corrections for state councils on developmental
disabilities
Section 3 amends section 122(a) of the Developmental
Disabilities Assistance and Bill of Rights Act of 2000 to
insert additional consideration in the allotment for
appropriations to States for funding Developmental Disabilities
Councils. When appropriating dollars to states, this section
states that the allotment may not be less than $400,000, 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 if the amount appropriated
in a fiscal year is less than $70,000,000. If the amount
appropriated in a fiscal year is more than $70,000,000, then
state allotments may not be less than $450,000, the amount
received by the state for the previous fiscal years, or the
amount of Federal appropriations received in fiscal year 2000,
2001, or 2002, whichever is greater.
IX. Changes in Existing Law
In compliance with rule XXVI paragraph 12 of the Standing
Rules of the Senate, the following provides a print of the
statute or the part or section thereof to be amended or
replaced (existing law proposed to be omitted is enclosed in
black brackets, new matter is printed in italic, existing law
in which no change is proposed is shown in roman):
PUBLIC HEALTH SERVICE ACT
* * * * * * *
Birth Defects and Developmental Disabilities Prevention Act
of 2003
* * * * * * *
TITLE III--GENERAL POWERS AND DUTIES OF PUBLIC HEALTH SERVICE
PART A--RESEARCH AND INVESTIGATION
* * * * * * *
PART B--FEDERAL-STATE COOPERATION
* * * * * * *
NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES
Sec. 371C. (a) In General.--
(1) National center.--* * *
(2) General duties.--The Secretary shall carry out
programs--
(A) to collect, analyze, and make available
data on birth defects [and developmental
disabilities], developmental disabilities, and
disabilities and health (in a manner that
facilitates compliance with [subsection
(d)(2)]), subsection (c)(2), including data on
the causes of such defects and disabilities and
on the incidence and prevalence of such defects
and disabilities;
(B) to operate regional centers for the
conduct of applied epidemiological research on
the prevention of such defects and
disabilities; [and]
(C) to provide information and education to
the public on the prevention of such defects
and disabilities[.];
(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.
* * * * * * *
[(b) Additional Provisions Regarding Collection of Data.--
[(1) In general.--In carrying out subsection
(a)(2)(A), the Secretary--
[(A) shall collect and analyze data by gender
and by racial and ethnic group, including
Hispanics, non-Hispanic whites, Blacks, Native
Americans, Asian Americans, and Pacific
Islanders:
[(B) shall collect data under subparagraph
(A) from birth certificates, death
certificates, hospital records, and such other
sources as the Secretary determines to be
appropriate; and
[(C) shall encourage States to establish or
improve programs for the collection and
analysis of epidemiological data on birth
defects, and to make the data available.
[(2) National clearinghouse.--In carrying out
subsection (a)(1), the Secretary shall establish and
maintain a National Information Clearinghouse on Birth
Defects to collect and disseminate to health
professionals and the general public information on
birth defects, including the prevention of such
defects.]
[(c)] (b) Grants and Contracts.--
* * * * * * *
[(d) (c)] Biennial Report.--* * *
[(1) contains information regarding the incidence and
prevalence of birth defects and the extent to which
birth defects have contributed to the incidence and
prevalence of infant mortality;]
(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;
* * * * * * *
(3) contains an assessment of the extent to which
various approaches of preventing birth defects,
developmental disabilities, and secondary health
conditions among individuals with disabilities have
been effective;
(4) describes the activities carried out under this
section; [and]
(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
[(5)] (7) contains any recommendations of the
Secretary regarding this section.
[(e)] (d) Applicability of Privacy Laws.--The provisions of
this section shall be subject to the requirements of section
552a of title 5, United States Code. All Federal laws relating
to the privacy of information shall apply to the data and
information that is collected under this section.
(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.
(f) Authorization of Appropriations.--For the purpose of
carrying out this section, there are authorized to be
appropriated [$30,000,000 for fiscal year 1999, $40,000,000 for
fiscal year 2000, and such sums as may be necessary for each of
the fiscal years 2001 and 2002.] such sums as may be necessary
for each of fiscal years 2003 through 2007.
* * * * * * *
DEVELOPMENTAL DISABILITIES ASSISTANCE AND BILL OF RIGHTS ACT OF 2000
* * * * * * *
Subtitle B--Federal Assistance to State Councils on Developmental
Disabilities
* * * * * * *
SEC. 122. STATE ALLOTMENTS.
(a) Allotments.--
(1) In general.--
* * * * * * *
(3) Minimum allotment for appropriations less
than or equal to $70,000,000.--* * *
(A) In general.--* * *
(i) * * *
(ii) to any State not described in
clause (i) may not be less than
$400,000, 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.
* * * * * * *
(4) Minimum allotment for appropriations in excess of
$70,000,000.--
(A) In general.-- * * *
(i) * * *
(ii) to any State not described in
clause (i) may not be less than
$450,000, 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.
* * * * * * *