[House Report 113-490]
[From the U.S. Government Publishing Office]
113th Congress Report
HOUSE OF REPRESENTATIVES
2d Session 113-490
======================================================================
AUTISM COLLABORATION, ACCOUNTABILITY, RESEARCH, EDUCATION, AND SUPPORT
ACT OF 2014
_______
June 23, 2014.--Committed to the Committee of the Whole House on the
State of the Union and ordered to be printed
_______
Mr. Upton, from the Committee on Energy and Commerce, submitted the
following
R E P O R T
[To accompany H.R. 4631]
[Including cost estimate of the Congressional Budget Office]
The Committee on Energy and Commerce, to whom was referred
the bill (H.R. 4631) to reauthorize certain provisions of the
Public Health Service Act relating to autism, and for other
purposes, having considered the same, report favorably thereon
with an amendment and recommend that the bill as amended do
pass.
CONTENTS
Page
Purpose and Summary.............................................. 5
Background and Need for Legislation.............................. 5
Hearings......................................................... 7
Committee Consideration.......................................... 7
Committee Votes.................................................. 7
Committee Oversight Findings..................................... 7
Statement of General Performance Goals and Objectives............ 7
New Budget Authority, Entitlement Authority, and Tax Expenditures 7
Earmark, Limited Tax Benefits, and Limited Tariff Benefits....... 7
Committee Cost Estimate.......................................... 8
Congressional Budget Office Estimate............................. 8
Federal Mandates Statement....................................... 10
Duplication of Federal Programs.................................. 10
Disclosure of Directed Rule Makings.............................. 10
Advisory Committee Statement..................................... 10
Applicability to Legislative Branch.............................. 10
Section-by-Section Analysis of the Legislation................... 10
Changes in Existing Law Made by the Bill, as Reported............ 11
The amendment is as follows:
Strike all after the enacting clause and insert the
following:
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Autism Collaboration, Accountability,
Research, Education, and Support Act of 2014'' or the ``Autism CARES
Act of 2014''.
SEC. 2. NATIONAL AUTISM SPECTRUM DISORDER INITIATIVE.
(a) In General.--The Secretary of Health and Human Services shall
designate an existing official within the Department of Health and
Human Services to oversee, in consultation with the Secretaries of
Defense and Education, national autism spectrum disorder research,
services, and support activities.
(b) Duties.--The official designated under subsection (a) shall--
(1) implement autism spectrum disorder activities, taking
into account the strategic plan developed by the Interagency
Autism Coordinating Committee under section 399CC(b) of the
Public Health Service Act (42 U.S.C. 280i-2(b)); and
(2) ensure that autism spectrum disorder activities of the
Department of Health and Human Services and of other Federal
departments and agencies are not unnecessarily duplicative.
SEC. 3. RESEARCH PROGRAM.
Section 399AA of the Public Health Service Act (42 U.S.C. 280i) is
amended--
(1) in subsection (a)(1), by inserting ``for children and
adults'' after ``reporting of State epidemiological data'';
(2) in subsection (b)(1)--
(A) by striking ``establishment of regional centers
of excellence'' and inserting ``establishment or
support of regional centers of excellence''; and
(B) by inserting ``for children and adults'' before
the period at the end;
(3) in subsection (b)(2), by striking ``center to be
established'' and inserting ``center to be established or
supported''; and
(4) in subsection (e), by striking ``2014'' and inserting
``2019''.
SEC. 4. AUTISM INTERVENTION.
Section 399BB of the Public Health Service Act (42 U.S.C. 280i-1) is
amended--
(1) in subsection (b)(1), by inserting ``culturally
competent'' after ``provide'';
(2) in subsection (c)(2)(A)(ii), by inserting ``(which may
include respite care for caregivers of individuals with an
autism spectrum disorder)'' after ``services and supports'';
(3) in subsection (e)(1)(B)(v), by inserting before the
semicolon the following: ``, which may include collaborating
with research centers or networks to provide training for
providers of respite care (as defined in section 2901)'';
(4) in subsection (f), by striking ``grants or contracts''
and all that follows through ``for individuals with'' and
inserting ``grants or contracts, which may include grants or
contracts to research centers or networks, to determine the
evidence-based practices for interventions to improve the
physical and behavioral health of individuals with''; and
(5) in subsection (g), by striking ``2014'' and inserting
``2019''.
SEC. 5. INTERAGENCY AUTISM COORDINATING COMMITTEE.
Section 399CC of the Public Health Service Act (42 U.S.C. 280i-2) is
amended--
(1) in subsection (b)--
(A) in paragraph (1)--
(i) by striking ``and annually update''; and
(ii) by striking ``intervention'' and
inserting ``interventions, including school and
community-based interventions'';
(B) by striking paragraph (2);
(C) by redesignating paragraph (1) as paragraph (2),
and inserting before such redesignated paragraph the
following:
``(1) monitor autism spectrum disorder research, and to the
extent practicable services and support activities, across all
Federal departments and agencies, including coordination of
Federal activities with respect to autism spectrum disorder;'';
(D) in paragraph (3), by striking ``recommendations
to the Director of NIH'';
(E) in paragraph (4), by inserting before the
semicolon the following: ``, and the process by which
public feedback can be better integrated into such
decisions''; and
(F) by striking paragraphs (5) and (6) and inserting
the following:
``(5) develop a strategic plan for the conduct of, and
support for, autism spectrum disorder research and services and
supports for individuals with an autism spectrum disorder and
the families of such individuals, which shall include--
``(A) proposed budgetary requirements; and
``(B) recommendations to ensure that autism spectrum
disorder research, services, and support activities of
the Department of Health and Human Services and of
other Federal departments and agencies are not
unnecessarily duplicative; and
``(6) submit to Congress and the President--
``(A) an annual update on the summary of advances
described in paragraph (2); and
``(B) an annual update to the strategic plan
described in paragraph (5), including any progress made
in achieving the goals outlined in such strategic
plan.'';
(2) in subsection (c)--
(A) in paragraph (1)--
(i) by striking the paragraph designation,
the heading, and the matter preceding
subparagraph (A) and inserting the following:
``(1) Federal membership.--The Committee shall be composed of
the following Federal members--'';
(ii) in subparagraph (C)--
(I) by inserting ``, such as the
Administration for Community Living,
Administration for Children and
Families, the Centers for Medicare &
Medicaid Services, the Food and Drug
Administration, and the Health
Resources and Services Administration''
before the semicolon at the end; and
(II) by adding at the end ``and'';
(iii) in subparagraph (D)--
(I) by inserting ``and the Department
of Defense'' after ``Department of
Education''; and
(II) by striking at the end ``; and''
and inserting a period; and
(iv) by striking subparagraph (E);
(B) in paragraph (2)--
(i) in the paragraph heading, by striking
``Additional'' and inserting ``Non-federal'';
(ii) in the matter preceding subparagraph
(A), by striking ``Not fewer than 6 members of
the Committee, or 1/3 of the total membership
of the Committee, whichever is greater'' and
inserting ``Not more than \1/2\, but not fewer
than 1/3, of the total membership of the
Committee'';
(iii) in subparagraph (A), by striking ``one
such member shall be an individual'' and
inserting ``two such members shall be
individuals'';
(iv) in subparagraph (B), by striking ``one
such member shall be a parent or legal
guardian'' and inserting ``two such members
shall be parents or legal guardians''; and
(v) in subparagraph (C), by striking ``one
such member shall be a representative'' and
inserting ``two such members shall be
representatives''; and
(C) by adding at the end the following:
``(3) Period of appointment; vacancies.--
``(A) Period of appointment for non-federal
members.--Non-Federal members shall serve for a term of
4 years, and may be reappointed for one or more
additional 4-year terms.
``(B) Vacancies.--A vacancy on the Committee shall be
filled in the manner in which the original appointment
was made and shall not affect the power or duties of
the Committee. Any member appointed to fill a vacancy
for an unexpired term shall be appointed for the
remainder of such term. A member may serve after the
expiration of the member's term until a successor has
been appointed.'';
(3) in subsection (d)--
(A) by striking paragraph (2); and
(B) by redesignating paragraphs (3) and (4) as
paragraphs (2) and (3), respectively; and
(4) in subsection (f), by striking ``2014'' and inserting
``2019''.
SEC. 6. REPORTS.
Section 399DD of the Public Health Service Act (42 U.S.C. 280i-3) is
amended--
(1) in the section heading, by striking ``report'' and
inserting ``reports'';
(2) in subsection (b), by redesignating paragraphs (1)
through (9) as subparagraphs (A) through (I), respectively, and
realigning the margins accordingly;
(3) by redesignating subsections (a) and (b) as paragraphs
(1) and (2), respectively, and realigning the margins
accordingly;
(4) by inserting after the section heading the following:
``(a) Progress Report.--'';
(5) in subsection (a)(1) (as so redesignated)--
(A) by striking ``2 years after the date of enactment
of the Combating Autism Reauthorization Act of 2011''
and inserting ``4 years after the date of enactment of
the Autism CARES Act of 2014'';
(B) by inserting ``and the Secretary of Defense''
after ``the Secretary of Education''; and
(C) by inserting ``, and make publicly available,
including through posting on the Internet Web site of
the Department of Health and Human Services,'' after
``Representatives''; and
(6) in subsection (a)(2) (as so redesignated)--
(A) in subparagraph (A), (as so redesignated), by
striking ``Combating Autism Act of 2006'' and inserting
``Autism CARES Act of 2014'';
(B) in subparagraph (B) (as so redesignated), by
striking ``particular provisions of Combating Autism
Act of 2006'' and inserting ``amendments made by the
Autism CARES Act of 2014'';
(C) by striking subparagraph (C) (as so
redesignated), and inserting the following:
``(C) information on the incidence and prevalence of
autism spectrum disorder, including available
information on the prevalence of autism spectrum
disorder among children and adults, and identification
of any changes over time with respect to the incidence
and prevalence of autism spectrum disorder;'';
(D) in subparagraph (D) (as so redesignated), by
striking ``6-year period beginning on the date of
enactment of the Combating Autism Act of 2006'' and
inserting ``4-year period beginning on the date of
enactment of the Autism CARES Act of 2014 and, as
appropriate, how this age varies across populations
subgroups'';
(E) in subparagraph (E) (as so redesignated), by
striking ``6-year period beginning on the date of
enactment of the Combating Autism Act of 2006'' and
inserting ``4-year period beginning on the date of
enactment of the Autism CARES Act of 2014 and, as
appropriate, how this age varies across populations
subgroups'';
(F) in subparagraph (F) (as so redesignated), by
inserting ``and, as appropriate, on how such average
time varies across populations subgroups'' before the
semicolon at the end;
(G) in subparagraph (G) (as so redesignated)--
(i) by striking ``including by various
subtypes,'' and inserting ``including by
severity level as practicable,''; and
(ii) by striking ``child may'' and inserting
``child or other factors, such as demographic
characteristics, may''; and
(H) by striking subparagraph (I) (as so
redesignated), and inserting the following:
``(I) a description of the actions taken to implement
and the progress made on implementation of the
strategic plan developed by the Interagency Autism
Coordinating Committee under section 399CC(b).''; and
(7) by adding at the end the following new subsection:
``(b) Report on Young Adults and Transitioning Youth.--
``(1) In general.--Not later than 2 years after the date of
enactment of the Autism CARES Act of 2014, the Secretary, in
coordination with the Secretary of Education and in
collaboration with the Secretary of Transportation, the
Secretary of Labor, the Secretary of Housing and Urban
Development, and the Attorney General, shall prepare and submit
to the Committee on Health, Education, Labor, and Pensions of
the Senate and the Committee on Energy and Commerce of the
House of Representatives, a report concerning young adults with
autism spectrum disorder and the challenges related to the
transition from existing school-based services to those
services available during adulthood.
``(2) Contents.--The report submitted under paragraph (1)
shall contain--
``(A) demographic characteristics of youth
transitioning from school-based to community-based
supports;
``(B) an overview of policies and programs relevant
to young adults with autism spectrum disorder relating
to post-secondary school transitional services,
including an identification of existing Federal laws,
regulations, policies, research, and programs;
``(C) proposals on establishing best practices
guidelines to ensure--
``(i) interdisciplinary coordination between
all relevant service providers receiving
Federal funding;
``(ii) coordination with transitioning youth
and the family of such transitioning youth; and
``(iii) inclusion of the individualized
education program for the transitioning youth,
as prescribed in section 614 of the Individuals
with Disabilities Education Act (20 U.S.C.
1414);
``(D) comprehensive approaches to transitioning from
existing school-based services to those services
available during adulthood, including--
``(i) services that increase access to, and
improve integration and completion of, post-
secondary education, peer support, vocational
training (as defined in section 103 of the
Rehabilitation Act of 1973 (29 U.S.C. 723)),
rehabilitation, self-advocacy skills, and
competitive, integrated employment;
``(ii) community-based behavioral supports
and interventions;
``(iii) community-based integrated
residential services, housing, and
transportation;
``(iv) nutrition, health and wellness,
recreational, and social activities;
``(v) personal safety services for
individuals with autism spectrum disorder
related to public safety agencies or the
criminal justice system; and
``(vi) evidence-based approaches for
coordination of resources and services once
individuals have aged out of post-secondary
education; and
``(E) proposals that seek to improve outcomes for
adults with autism spectrum disorder making the
transition from a school-based support system to
adulthood by--
``(i) increasing the effectiveness of
programs that provide transition services;
``(ii) increasing the ability of the relevant
service providers described in subparagraph (C)
to provide supports and services to underserved
populations and regions;
``(iii) increasing the efficiency of service
delivery to maximize resources and outcomes,
including with respect to the integration of
and collaboration among services for
transitioning youth;
``(iv) ensuring access to all services
necessary to transitioning youth of all
capabilities; and
``(v) encouraging transitioning youth to
utilize all available transition services to
maximize independence, equal opportunity, full
participation, and self-sufficiency.''.
SEC. 7. AUTHORIZATION OF APPROPRIATIONS.
Section 399EE of the Public Health Service Act (42 U.S.C. 280i-4) is
amended--
(1) in subsection (a), by striking ``fiscal years 2012
through 2014'' and inserting ``fiscal years 2015 through
2019'';
(2) in subsection (b), by striking ``fiscal years 2011
through 2014'' and inserting ``fiscal years 2015 through
2019''; and
(3) in subsection (c), by striking ``$161,000,000 for each of
fiscal years 2011 through 2014'' and inserting ``$190,000,000
for each of fiscal years 2015 through 2019''.
Purpose and Summary
H.R. 4631, ``Autism Collaboration, Accountability,
Research, Education, and Support Act of 2014'' or the ``Autism
CARES Act of 2014'' was introduced on May 9, 2014 by Rep. Chris
Smith (R-NJ) and Rep. Michael Doyle (D-PA) and referred to the
Committee on Energy and Commerce.
Background and Need for Legislation
Autism spectrum disorder (ASD) is a range of complex
neurodevelopment disorders, characterized by social
impairments, communication difficulties, and repetitive
patterns of behavior. The disorder can range in severity from
milder forms known as Asperger syndrome to more severe forms.
The Centers for Disease Control and Prevention (CDC) estimates
that about 1 in 68 children have been identified with ASD. Boys
are five times more likely to have ASD. This is a tenfold
increase in prevalence in ASD over the last 40 years, primarily
due to better awareness, surveillance, and diagnosis.\1\
---------------------------------------------------------------------------
\1\http://www.cdc.gov/ncbddd/autism/index.html.
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Although the cause of ASD is unclear, science has
determined that genetics and environment are factors.
Researchers have identified a number of genes associated with
the disorder. Studies of people with ASD have found
irregularities in several regions of the brain along with
abnormal levels of brain chemicals that could affect normal
brain development during gestation. This research is
preliminary, and further study is needed.\2\
---------------------------------------------------------------------------
\2\http://www.ninds.nih.gov/disorders/autism/detail_autism.htm.
---------------------------------------------------------------------------
In 2000, Congress passed the Children's Health Act to
address the growing need for research and resources directed
toward ASD and other developmental disorders. Activities
included surveillance, education, and research. It also
established the Interagency Autism Coordinating Committee
(IACC). In 2006, Congress passed the Combating Autism Act (CAA)
that reauthorized provisions in the Children's Health Act
related to ASD and required the development of an overall
strategic plan. In 2011, CAA was reauthorized again to continue
research at the National Institutes of Health (NIH),
surveillance at the CDC, and education and early detection
activities at the Health Resources and Services Administration
(HRSA). The IACC also was reauthorized. It expires in 2014.
The Autism CARES Act 2014 would reauthorize the Combating
Autism Reauthorization Act (CARA) of 2011. The bill would
continue current Federal activities related to autism,
including biomedical research, surveillance, and education. The
bill would require the Secretary to appoint an existing Federal
official to oversee the Federal activities related to ASD,
including the strategic plan, and ensure that activities are
not unnecessarily duplicative. In addition, within 2 years, the
Secretary would prepare a report that studies the needs of
autistic youth transitioning into adulthood. The IACC would be
reauthorized and include requirements for Federal and non-
Federal membership.
In implementing the programmatic and research initiatives
funded by this Act, the Committee strongly encourages Federal
agencies to pay particular attention to the need to focus on
early diagnosis and intervention in children ages 5 or younger.
With new advances in scientific research relating to autism, it
is important that Federal agencies are aware of and taking into
account that the average age of diagnosis could drop, in the
very near term, from ages 4 and 5 to toddlers and younger. The
Committee is aware that there is evidence-based science that
will make it possible to identify signs of autism present in
the first year or two of life, thereby opening a window for
even earlier diagnosis and intervention in the future. The
Committee is aware that such scientific progress could create
significant societal and economic benefits if intervention and
treatment can start earlier than previously thought possible.
This could improve dramatically the quality of life for
children with autism, permit them to have more fulfilling and
productive lives, and could lower substantially the costs
associated with their education and health care over their
lifetimes.
The Committee appreciates the diverse makeup of IACC, and
would like the panel to continue to represent the diversity
within the autism community and remain a place where all
viewpoints can be heard. Current members include parents and
legal guardians, individuals with an autism diagnosis, advocacy
organizations, and medical researchers. The Committee believes
that these groups should continue to be represented. After
previous reauthorizations of the Combating Autism Act, IACC has
been dissolved and reconstituted. The Committee believes that
this is unproductive and disruptive, and would like IACC to
remain active, as the changes in this bill are instituted to
ensure continuity.
Hearings
The Committee on Energy and Commerce has not held hearings
on the legislation.
Committee Consideration
On May 28, 2014, the Subcommittee on Health met in open
markup session and forwarded H.R. 4631 to the full Committee,
as amended, by a voice vote. On June 10, 2014, the full
Committee met in open markup session and ordered H.R. 4631
reported to the House, as amended, by voice vote.
Committee Votes
Clause 3(b) of rule XIII of the Rules of the House of
Representatives requires the Committee to list the record votes
on the motion to report legislation and amendments thereto.
There were no record votes taken in connection with ordering
H.R. 4631 reported. A motion by Mr. Upton to order H.R. 4631
reported to the House, with amendment, was agreed to by a voice
vote.
Committee Oversight Findings
Pursuant to clause 3(c)(1) of rule XIII of the Rules of the
House of Representatives, the Committee has not held hearings
on this legislation.
Statement of General Performance Goals and Objectives
H.R. 4631 reauthorizes Federal activities related to ASD
and provides direction to the relevant agencies to improve
these activities.
New Budget Authority, Entitlement Authority, and Tax Expenditures
In compliance with clause 3(c)(2) of rule XIII of the Rules
of the House of Representatives, the Committee finds that H.R.
4631, would result in no new or increased budget authority,
entitlement authority, or tax expenditures or revenues.
Earmark, Limited Tax Benefits, and Limited Tariff Benefits
In compliance with clause 9(e), 9(f), and 9(g) of rule XXI
of the Rules of the House of Representatives, the Committee
finds that H.R. 4631 contains no earmarks, limited tax
benefits, or limited tariff benefits.
Committee Cost Estimate
The Committee adopts as its own the cost estimate prepared
by the Director of the Congressional Budget Office pursuant to
section 402 of the Congressional Budget Act of 1974.
Congressional Budget Office Estimate
Pursuant to clause 3(c)(3) of rule XIII of the Rules of the
House of Representatives, the following is the cost estimate
provided by the Congressional Budget Office pursuant to section
402 of the Congressional Budget Act of 1974:
U.S. Congress,
Congressional Budget Office,
Washington, DC, June 20, 2014.
Hon. Fred Upton,
Chairman, Committee on Energy and Commerce,
House of Representatives, Washington, DC.
Dear Mr. Chairman: The Congressional Budget Office has
prepared the enclosed cost estimate for H.R. 4631, the Autism
Collaboration, Accountability, Research, Education, and Support
Act of 2014. This estimate supersedes CBO's original estimate
that was transmitted on June 18, 2014. It corrects an error in
stating the bill's authorization amount of $190 million a year
for the National Institutes of Health. There is no change to
CBO's estimate of outlays under the bill.
If you wish further details on this estimate, we will be
pleased to provide them. The CBO staff contact is Lisa Ramirez-
Branum.
Sincerely,
Douglas W. Elmendorf.
Enclosure.
H.R. 4631--Autism Collaboration, Accountability, Research, Education,
and Support Act of 2014
Summary: H.R. 4631 would amend the Public Health Service
Act to reauthorize research, surveillance, and education
activities related to autism spectrum disorders (autism)
conducted by various agencies within the Department of Health
and Human Services (HHS). Those activities are conducted by the
Centers for Disease Control and Prevention (CDC), the Health
Resources and Services Administration (HRSA), and the National
Institutes of Health (NIH).
The bill would authorize appropriations for autism
activities at HHS of $260 million in 2015 and $1.3 billion over
the 2015-2019 period. CBO estimates that implementing H.R. 4631
would cost $1.1 billion over the 2015-2019 period, assuming
appropriation of the authorized amounts. Pay-as-you-go
procedures do not apply to this legislation because it would
not affect direct spending or revenues.
The bill contains no intergovernmental or private-sector
mandates as defined in the Unfunded Mandates Reform Act (UMRA).
Estimated cost to the Federal Government: The estimated
budgetary effect of H.R. 4631 is shown in the following table.
The costs of this legislation fall within budget function 550
(health).
----------------------------------------------------------------------------------------------------------------
By fiscal year, in million of dollars--
-------------------------------------------------------
2015 2016 2017 2018 2019 2015-2019
----------------------------------------------------------------------------------------------------------------
CHANGES IN SPENDING SUBJECT TO APPROPRIATION
CDC:
Authorization Level................................. 22 22 22 22 22 110
Estimated Outlays................................... 10 20 20 20 20 90
HRSA:
Authorization Level................................. 48 48 48 48 48 240
Estimated Outlays................................... 25 45 45 50 50 215
NIH:
Authorization Level................................. 190 190 190 190 190 950
Estimated Outlays................................... 50 150 180 185 190 755
Total Changes:
Authorization Level............................. 260 260 260 260 260 1,300
Estimated Outlays............................... 85 215 245 255 260 1,060
----------------------------------------------------------------------------------------------------------------
Note: CDC = Centers for Disease Control and Prevention; HRSA = Health Resources and Services Administration; NIH
= National Institutes of Health.
Basis of estimate: The CDC, HRSA, and NIH administer
programs that support activities to prevent, diagnose, and
treat autism. The Congress appropriated $259 million for such
activities in 2014; however, authority to operate those
programs expires at the end of fiscal year 2014. H.R. 4631
would reauthorize funding for these activities through 2019 at
a level of $260 million per year. For this estimate, CBO
assumes that H.R. 4631 will be enacted near the end of fiscal
year 2014 and that the authorized amounts will be appropriated
near the beginning of each fiscal year. The estimate of outlays
is based on historical spending patterns for CDC, HRSA, and NIH
activities.
The CDC currently administers several surveillance and
research programs directed at determining the prevalence of
autism and the risk factors for developing autism, as well as
raising awareness of the signs of autism for families, health
care providers, and childcare educators. The Congress
appropriated approximately $22 million for those activities in
fiscal year 2014. The bill would authorize the appropriation of
$22 million annually over the 2015-2019 period for such
programs. CBO estimates that implementing those provisions
would cost $90 million over the 2015-2019 period.
HRSA currently operates several programs to train health
care providers in the delivery of care to children with autism
and other developmental disabilities. The Congress appropriated
approximately $47 million for those activities in fiscal year
2014. The legislation would authorize the appropriation of $48
million for each of fiscal years 2015 through 2019 for HRSA to
continue such activities. CBO estimates that implementing those
provisions would cost $215 million over the 2015-2019 period.
H.R. 4631 also would reauthorize programs and activities
carried out by NIH to advance autism research and treatment
including the Autism Centers of Excellence program. The
Congress appropriated $190 million for those activities in
fiscal year 2014. The bill would authorize the appropriation of
$190 million for each of fiscal years 2015 through 2019 for NIH
to continue such activities. CBO estimates that implementing
those provisions would cost $755 million over the 2015-2019
period.
Pay-As-You-Go considerations: None.
Intergovernmental and private-sector impact: H.R. 4631
contains no intergovernmental or private-sector mandates as
defined in UMRA. The bill would benefit state, local, and
tribal governments that receive grants related to autism
spectrum disorders.
Previous CBO estimate: On June 18, 2014, CBO transmitted a
cost estimate for H.R. 4631, the Autism Collaboration,
Accountability, Research, Education, and Support Act of 2014,
as ordered reported by the House Committee on Energy and
Commerce on June 10, 2014. That previous estimate incorrectly
stated that the legislation authorized the appropriation of
$191 million a year for each of fiscal years 2015 through 2019
for NIH to carry out autism-related activities. This revised
estimate corrects the amounts authorized to be equal to $190
million a year for each of fiscal years 2015 through 2019.
There is no change to CBO's estimate of outlays under the bill.
Estimate prepared by: Federal costs: Lisa Ramirez-Branum
and Santiago Vallinas; Impact on state, local, and tribal
governments: J'nell L. Blanco; Impact on the private sector:
Sam Trachtman.
Estimate approved by: Holly Harvey, Deputy Assistant
Director for Budget Analysis.
Federal Mandates Statement
The Committee adopts as its own the estimate of Federal
mandates prepared by the Director of the Congressional Budget
Office pursuant to section 423 of the Unfunded Mandates Reform
Act.
Duplication of Federal Programs
No provision of H.R. 4631 establishes or reauthorizes a
program of the Federal Government known to be duplicative of
another Federal program, a program that was included in any
report from the Government Accountability Office to Congress
pursuant to section 21 of Public Law 111-139, or a program
related to a program identified in the most recent Catalog of
Federal Domestic Assistance.
Disclosure of Directed Rule Makings
The Committee estimates that enacting H.R. 4631
specifically directs to be completed 0 rule makings within the
meaning of 5 U.S.C. 551.
Advisory Committee Statement
No advisory committees within the meaning of section 5(b)
of the Federal Advisory Committee Act were created by this
legislation.
Applicability to Legislative Branch
The Committee finds that the legislation does not relate to
the terms and conditions of employment or access to public
services or accommodations within the meaning of section
102(b)(3) of the Congressional Accountability Act.
Section-by-Section Analysis of the Legislation
Section 1. Short title
Section 1 provides the short title of ``Autism
Collaboration, Accountability, Research, Education, and Support
Act of 2014'' or the ``Autism CARES Act of 2014.''
Section 2. National Autism Spectrum Disorder Initiative
Section 2 would require the Secretary to appoint an
existing official to oversee the activities related to autism
including the strategic plan and ensure the elimination of
unnecessary duplication in activities.
Section 3. Research program
Section 3 would require the CDC to collect data on both
children and adults with autism.
Section 4. Autism intervention
Section 4 would require that activities related to autism
early education, early detection, and intervention be
culturally competent. The bill also would provide for the
identification of evidence-based practices and the training of
respite caregivers.
Section 5. Interagency Autism Coordinating Committee
Section 5 would require the IACC, as part of its
responsibilities, to include school and community-based
interventions in the summary of advances; monitor research,
services, and support activities across Federal departments and
agencies; and include a plan for the conduct of and support for
ASD research and services and supports for individuals with ASD
and their families in the strategic plan. Federal members of
the IACC can include the Department of Defense, the Department
of Education, the Administration for Community Living, the
Administration for Children and Families, the Centers for
Medicare and Medicaid Services, the Food and Drug
Administration, and the Health Resources and Services
Administration. Non-Federal members would include at least 2
members from each of the following groups: parents, persons
with ASD, and advocacy groups.
Section 6. Reports
Section 6 would extend the time frame for the progress
report from 2 to 4 years and coordinate with the Secretary of
Defense in the preparation of the report. The report would
include data on the incidence and prevalence of ASD among
children and adults and any changes over time and a description
of actions made on the implementation of the strategic plan.
The section would require the Secretary to prepare and submit a
report on the needs and challenges of autistic youth
transitioning from school-based services to adult, community-
based services.
Section 7. Authorization of appropriations
Section 7 would reauthorize CDC activities at $22 million
for each of FY 2015 through FY 2019; HRSA activities at $48
million for each of FY 2015 through FY 2019; and NIH/IACC
activities at $190 million for each of FY 2015 through FY 2019.
Changes in Existing Law Made by the Bill, as Reported
In compliance with clause 3(e) of rule XIII of the Rules of
the House of Representatives, changes in existing law made by
the bill, as reported, are shown as follows (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
TITLE III--GENERAL POWERS AND DUTIES OF PUBLIC HEALTH SERVICE
* * * * * * *
PART R--PROGRAMS RELATING TO AUTISM
SEC. 399AA. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH
PROGRAM.
(a) Autism Spectrum Disorder and Other Developmental
Disabilities.--
(1) In general.--The Secretary, acting through the
Director of the Centers for Disease Control and
Prevention, may award grants or cooperative agreements
to eligible entities for the collection, analysis, and
reporting of State epidemiological data for children
and adults on autism spectrum disorder and other
developmental disabilities. An eligible entity shall
assist with the development and coordination of State
autism spectrum disorder and other developmental
disability surveillance efforts within a region. In
making such awards, the Secretary may provide direct
technical assistance in lieu of cash.
* * * * * * *
(b) Centers of Excellence in Autism Spectrum Disorder
Epidemiology.--
(1) In general.--The Secretary, acting through the
Director of the Centers for Disease Control and
Prevention, shall, subject to the availability of
appropriations, award grants or cooperative agreements
for the [establishment of regional centers of
excellence] establishment or support of regional
centers of excellence in autism spectrum disorder and
other developmental disabilities epidemiology for the
purpose of collecting and analyzing information on the
number, incidence, correlates, and causes of autism
spectrum disorder and other developmental disabilities
for children and adults.
(2) Requirements.--To be eligible to receive a grant
or cooperative agreement under paragraph (1), an entity
shall submit to the Secretary an application containing
such agreements and information as the Secretary may
require, including an agreement that the [center to be
established] center to be established or supported
under the grant or cooperative agreement shall operate
in accordance with the following:
(A) * * *
* * * * * * *
(e) Sunset.--This section shall not apply after September 30,
[2014] 2019.
SEC. 399BB. AUTISM EDUCATION, EARLY DETECTION, AND INTERVENTION.
(a) * * *
(b) In General.--The Secretary shall, subject to the
availability of appropriations, establish and evaluate
activities to--
(1) provide culturally competent information and
education on autism spectrum disorder and other
developmental disabilities to increase public awareness
of developmental milestones;
* * * * * * *
(c) Information and Education.--
(1) * * *
(2) Lead agency.--
(A) Designation.--As a condition on the
provision of assistance or the conduct of
activities under this section with respect to a
State, the Secretary may require the Governor
of the State--
(i) * * *
(ii) acting through such lead agency,
to make available to individuals and
their family members, guardians,
advocates, or authorized
representatives; providers; and other
appropriate individuals in the State,
comprehensive culturally competent
information about State and local
resources regarding autism spectrum
disorder and other developmental
disabilities, risk factors,
characteristics, identification,
diagnosis or rule out, available
services and supports (which may
include respite care for caregivers of
individuals with an autism spectrum
disorder), and evidence-based
interventions.
* * * * * * *
(e) Diagnosis.--
(1) Training.--The Secretary, in coordination with
activities conducted under title V of the Social
Security Act, shall, subject to the availability of
appropriations, expand existing interdisciplinary
training opportunities or opportunities to increase the
number of sites able to diagnose or rule out
individuals with autism spectrum disorder or other
developmental disabilities and ensure that--
(A) * * *
(B) trainees under such training programs--
(i) * * *
* * * * * * *
(v) demonstrate an ability to use a
family-centered approach, which may
include collaborating with research
centers or networks to provide training
for providers of respite care (as
defined in section 2901); and
* * * * * * *
(f) Intervention.--The Secretary shall promote research,
through [grants or contracts, to determine the evidence-based
practices for interventions for individuals with] grants or
contracts, which may include grants or contracts to research
centers or networks, to determine the evidence-based practices
for interventions to improve the physical and behavioral health
of individuals with autism spectrum disorder or other
developmental disabilities, develop guidelines for those
interventions, and disseminate information related to such
research and guidelines.
(g) Sunset.--This section shall not apply after September 30,
[2014] 2019.
SEC. 399CC. INTERAGENCY AUTISM COORDINATING COMMITTEE.
(a) * * *
(b) Responsibilities.--In carrying out its duties under this
section, the Committee shall--
(1) monitor autism spectrum disorder research, and to
the extent practicable services and support activities,
across all Federal departments and agencies, including
coordination of Federal activities with respect to
autism spectrum disorder;
[(1)] (2) develop [and annually update] a summary of
advances in autism spectrum disorder research related
to causes, prevention, treatment, early screening,
diagnosis or rule out, [intervention] interventions,
including school and community-based interventions, and
access to services and supports for individuals with
autism spectrum disorder;
[(2) monitor Federal activities with respect to
autism spectrum disorder;]
(3) make recommendations to the Secretary regarding
any appropriate changes to such activities, including
[recommendations to the Director of NIH] with respect
to the strategic plan developed under paragraph (5);
(4) make recommendations to the Secretary regarding
public participation in decisions relating to autism
spectrum disorder, and the process by which public
feedback can be better integrated into such decisions;
[(5) develop and annually update a strategic plan for
the conduct of, and support for, autism spectrum
disorder research, including proposed budgetary
requirements; and
[(6) submit to the Congress such strategic plan and
any updates to such plan.]
(5) develop a strategic plan for the conduct of, and
support for, autism spectrum disorder research and
services and supports for individuals with an autism
spectrum disorder and the families of such individuals,
which shall include--
(A) proposed budgetary requirements; and
(B) recommendations to ensure that autism
spectrum disorder research, services, and
support activities of the Department of Health
and Human Services and of other Federal
departments and agencies are not unnecessarily
duplicative; and
(6) submit to Congress and the President--
(A) an annual update on the summary of
advances described in paragraph (2); and
(B) an annual update to the strategic plan
described in paragraph (5), including any
progress made in achieving the goals outlined
in such strategic plan.
(c) Membership.--
[(1) In general.--The Committee shall be composed
of--]
(1) Federal membership.--The Committee shall be
composed of the following Federal members--
(A) * * *
* * * * * * *
(C) the heads of such other agencies as the
Secretary determines appropriate, such as the
Administration for Community Living,
Administration for Children and Families, the
Centers for Medicare & Medicaid Services, the
Food and Drug Administration, and the Health
Resources and Services Administration; and
(D) representatives of other Federal
Governmental agencies that serve individuals
with autism spectrum disorder such as the
Department of Education[; and] and the
Department of Defense.
[(E) the additional members appointed under
paragraph (2).]
(2) [Additional] Non-federal members.-- [Not fewer
than 6 members of the Committee, or 1/3 of the total
membership of the Committee, whichever is greater] Not
more than 1/2, but not fewer than 1/3, of the total
membership of the Committee, shall be composed of non-
Federal public members to be appointed by the
Secretary, of which--
(A) at least [one such member shall be an
individual] two such members shall be
individuals with a diagnosis of autism spectrum
disorder;
(B) at least [one such member shall be a
parent or legal guardian] two such members
shall be parents or legal guardians of an
individual with an autism spectrum disorder;
and
(C) at least [one such member shall be a
representative] two such members shall be
representatives of leading research, advocacy,
and service organizations for individuals with
autism spectrum disorder.
(3) Period of appointment; vacancies.--
(A) Period of appointment for non-federal
members.--Non-Federal members shall serve for a
term of 4 years, and may be reappointed for one
or more additional 4-year terms.
(B) Vacancies.--A vacancy on the Committee
shall be filled in the manner in which the
original appointment was made and shall not
affect the power or duties of the Committee.
Any member appointed to fill a vacancy for an
unexpired term shall be appointed for the
remainder of such term. A member may serve
after the expiration of the member's term until
a successor has been appointed.
(d) Administrative Support; Terms of Service; Other
Provisions.--The following provisions shall apply with respect
to the Committee:
(1) * * *
[(2) Members of the Committee appointed under
subsection (c)(2) shall serve for a term of 4 years,
and may be reappointed for one or more additional 4
year term. Any member appointed to fill a vacancy for
an unexpired term shall be appointed for the remainder
of such term. A member may serve after the expiration
of the member's term until a successor has taken
office.]
[(3)] (2) The Committee shall meet at the call of the
chairperson or upon the request of the Secretary. The
Committee shall meet not fewer than 2 times each year.
[(4)] (3) All meetings of the Committee shall be
public and shall include appropriate time periods for
questions and presentations by the public.
* * * * * * *
(f) Sunset.--This section shall not apply after September 30,
[2014] 2019, and the Committee shall be terminated on such
date.
SEC. 399DD. [REPORT] REPORTS TO CONGRESS.
(a) Progress Report.--
[(a)] (1) In General.--Not later than [2 years after
the date of enactment of the Combating Autism
Reauthorization Act of 2011] 4 years after the date of
enactment of the Autism CARES Act of 2014, the
Secretary, in coordination with the Secretary of
Education and the Secretary of Defense, shall prepare
and submit to the Health, Education, Labor, and
Pensions Committee of the Senate and the Energy and
Commerce Committee of the House of Representatives, and
make publicly available, including through posting on
the Internet Web site of the Department of Health and
Human Services, a progress report on activities related
to autism spectrum disorder and other developmental
disabilities.
[(b)] (2) Contents.--The report submitted under
subsection (a) shall contain--
[(1)] (A) a description of the progress made
in implementing the provisions of the
[Combating Autism Act of 2006] Autism CARES Act
of 2014;
[(2)] (B) a description of the amounts
expended on the implementation of the
[particular provisions of Combating Autism Act
of 2006] amendments made by the Autism CARES
Act of 2014;
[(3) information on the incidence of autism
spectrum disorder and trend data of such
incidence since the date of enactment of the
Combating Autism Act of 2006;]
(C) information on the incidence and
prevalence of autism spectrum disorder,
including available information on the
prevalence of autism spectrum disorder
among children and adults, and
identification of any changes over time
with respect to the incidence and
prevalence of autism spectrum disorder;
[(4)] (D) information on the average age of
diagnosis for children with autism spectrum
disorder and other disabilities, including how
that age may have changed over the [6-year
period beginning on the date of enactment of
the Combating Autism Act of 2006] 4-year period
beginning on the date of enactment of the
Autism CARES Act of 2014 and, as appropriate,
how this age varies across populations
subgroups;
[(5)] (E) information on the average age for
intervention for individuals diagnosed with
autism spectrum disorder and other
developmental disabilities, including how that
age may have changed over the [6-year period
beginning on the date of enactment of the
Combating Autism Act of 2006] 4-year period
beginning on the date of enactment of the
Autism CARES Act of 2014 and, as appropriate,
how this age varies across populations
subgroups;
[(6)] (F) information on the average time
between initial screening and then diagnosis or
rule out for individuals with autism spectrum
disorder or other developmental disabilities,
as well as information on the average time
between diagnosis and evidence-based
intervention for individuals with autism
spectrum disorder or other developmental
disabilities and, as appropriate, on how such
average time varies across populations
subgroups;
[(7)] (G) information on the effectiveness
and outcomes of interventions for individuals
diagnosed with autism spectrum disorder,
[including by various subtypes,] including by
severity level as practicable, and other
developmental disabilities and how the age of
the [child may] child or other factors, such as
demographic characteristics, may affect such
effectiveness;
[(8)] (H) information on the effectiveness
and outcomes of innovative and newly developed
intervention strategies for individuals with
autism spectrum disorder or other developmental
disabilities; and
[(9) information on services and supports
provided to individuals with autism spectrum
disorder and other developmental disabilities
who have reached the age of majority (as
defined for purposes of section 615(m) of the
Individuals with Disabilities Education Act (20
U.S.C. 1415(m)).]
(I) a description of the actions
taken to implement and the progress
made on implementation of the strategic
plan developed by the Interagency
Autism Coordinating Committee under
section 399CC(b).
(b) Report on Young Adults and Transitioning Youth.--
(1) In general.--Not later than 2 years after the
date of enactment of the Autism CARES Act of 2014, the
Secretary, in coordination with the Secretary of
Education and in collaboration with the Secretary of
Transportation, the Secretary of Labor, the Secretary
of Housing and Urban Development, and the Attorney
General, shall prepare and submit to the Committee on
Health, Education, Labor, and Pensions of the Senate
and the Committee on Energy and Commerce of the House
of Representatives, a report concerning young adults
with autism spectrum disorder and the challenges
related to the transition from existing school-based
services to those services available during adulthood.
(2) Contents.--The report submitted under paragraph
(1) shall contain--
(A) demographic characteristics of youth
transitioning from school-based to community-
based supports;
(B) an overview of policies and programs
relevant to young adults with autism spectrum
disorder relating to post-secondary school
transitional services, including an
identification of existing Federal laws,
regulations, policies, research, and programs;
(C) proposals on establishing best practices
guidelines to ensure--
(i) interdisciplinary coordination
between all relevant service providers
receiving Federal funding;
(ii) coordination with transitioning
youth and the family of such
transitioning youth; and
(iii) inclusion of the individualized
education program for the transitioning
youth, as prescribed in section 614 of
the Individuals with Disabilities
Education Act (20 U.S.C. 1414);
(D) comprehensive approaches to transitioning
from existing school-based services to those
services available during adulthood,
including--
(i) services that increase access to,
and improve integration and completion
of, post-secondary education, peer
support, vocational training (as
defined in section 103 of the
Rehabilitation Act of 1973 (29 U.S.C.
723)), rehabilitation, self-advocacy
skills, and competitive, integrated
employment;
(ii) community-based behavioral
supports and interventions;
(iii) community-based integrated
residential services, housing, and
transportation;
(iv) nutrition, health and wellness,
recreational, and social activities;
(v) personal safety services for
individuals with autism spectrum
disorder related to public safety
agencies or the criminal justice
system; and
(vi) evidence-based approaches for
coordination of resources and services
once individuals have aged out of post-
secondary education; and
(E) proposals that seek to improve outcomes
for adults with autism spectrum disorder making
the transition from a school-based support
system to adulthood by--
(i) increasing the effectiveness of
programs that provide transition
services;
(ii) increasing the ability of the
relevant service providers described in
subparagraph (C) to provide supports
and services to underserved populations
and regions;
(iii) increasing the efficiency of
service delivery to maximize resources
and outcomes, including with respect to
the integration of and collaboration
among services for transitioning youth;
(iv) ensuring access to all services
necessary to transitioning youth of all
capabilities; and
(v) encouraging transitioning youth
to utilize all available transition
services to maximize independence,
equal opportunity, full participation,
and self-sufficiency.
SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.
(a) Developmental Disabilities Surveillance and Research
Program.--To carry out section 399AA, there is authorized to be
appropriated $22,000,000 for each of [fiscal years 2012 through
2014] fiscal years 2015 through 2019.
(b) Autism Education, Early Detection, and Intervention.--To
carry out section 399BB, there is authorized to be appropriated
$48,000,000 for each of [fiscal years 2011 through 2014] fiscal
years 2015 through 2019.
(c) Interagency Autism Coordinating Committee; Certain Other
Programs.--To carry out sections 399CC, 404H, and 409C, there
is authorized to be appropriated [$161,000,000 for each of
fiscal years 2011 through 2014] $190,000,000 for each of fiscal
years 2015 through 2019.
* * * * * * *