Updated House version of Autism Collaboration, Accountability, Research, Education, and Support Act of 2014

25 Jun

The US Congress is working to reauthorize the law which authorizes funding allocations for autism research and sets up a structure to advise the government on this research. The House of Representatives released the first proposed bill on May 9. The Senate version was introduced on June 9.

A few quick notes:

1) the House version has changed names from the “Combating Autism Reauthorization Act of 2014” to the “Autism Collaboration, Accountability, Research, Education, and Support Act of 2014” or the “Autism CARES Act of 2014”. This aligns with the Senate version.

2) the list of sponsors has grown significantly (you can see that in the text below)

3) the provision that 4 members of the Interagency Autism Coordinating Committee (IACC) be appointed by congress appears to be gone.

There are likely other changes, but other than the section on the IACC, I did not find them on a first review. The House version appears to be aligning with the Senate version which is an indication that the bills are moving towards approval. Much of the basic structure of the existing law (funding authorization, IACC, etc.) remains and is being updated with more money and a 2019 sunset date.

Changes to the IACC (if I read this correctly) are included in the markup below. Bold indicates added language. Strikethroughs indicate cut language.

(a) Establishment
The Secretary shall establish a committee, to be known as the “Interagency Autism Coordinating Committee” (in this section referred to as the “Committee”), to coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder.

(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;

(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, 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.”;

Membership changes to the IACC

1) Instead of one seat specified for an autistic, two seats will be specified (there were originally 3 autistics on the current IACC. At least one also was a member of an autism organization)

2) Instead of one seat specified for a parent, two seats will be specified (there are currently at least six parents and one relative on autistics on the IACC. Some fill multiple roles: parent and representative of an autism org or parent and adult autistic).

3) Instead of one seat specified for a representative of an autism organization, two will be specified (the current IACC started with at least five members of autism orgs)

The law specifies what to do to fill a vacancy as well.

[Congressional Bills 113th Congress]
[From the U.S. Government Printing Office]
[H.R. 4631 Reported in House (RH)]

Union Calendar No. 365
113th CONGRESS
2d Session
H. R. 4631

[Report No. 113-490]

To reauthorize certain provisions of the Public Health Service Act
relating to autism, and for other purposes.

_______________________________________________________________________

IN THE HOUSE OF REPRESENTATIVES

May 9, 2014

Mr. Smith of New Jersey (for himself, Mr. Doyle, Mrs. McMorris Rodgers,
Mr. Van Hollen, Mr. Sessions, Mr. Wolf, Mr. Stivers, Mr. Meehan, Mr.
Moran, Mrs. Blackburn, Mr. Miller of Florida, Mrs. Walorski, Mr. Larson
of Connecticut, Ms. Jackson Lee, Mr. Harper, Mr. Lance, Mr. Meadows,
Mr. Marino, Mr. Deutch, Mr. Rooney, Mr. Pompeo, Mr. Aderholt, Mr.
Bachus, Mr. Gibson, Mrs. Miller of Michigan, Mr. Young of Alaska, Mr.
King of New York, Ms. Shea-Porter, Ms. DeLauro, Mr. Murphy of
Pennsylvania, Mr. Fitzpatrick, Mr. Terry, Mr. Kelly of Pennsylvania,
Mr. Yoder, and Mr. Matheson) introduced the following bill; which was
referred to the Committee on Energy and Commerce

June 23, 2014

Additional sponsors: Mr. Roe of Tennessee, Ms. Jenkins, Mr. McGovern,
Mr. Israel, Ms. Slaughter, Mr. Vargas, Mr. David Scott of Georgia, Mr.
Grimm, Mr. Fortenberry, Mr. Bishop of Georgia, Ms. Norton, Ms. Roybal-
Allard, Mr. Ellison, Mr. Carson of Indiana, Mr. Schock, Mr. Daines, Mr.
Quigley, Mrs. Capito, Mr. Huffman, Mr. Fattah, Mr. McIntyre, Mr.
Lipinski, Mr. Peterson, Mr. Bilirakis, Mr. Shimkus, Mr. Roskam, Mr.
Burgess, Mr. Gerlach, Ms. Schwartz, Mr. Holding, Mrs. Carolyn B.
Maloney of New York, Mr. Braley of Iowa, Mr. Schiff, Ms. Kaptur, Mr.
Griffin of Arkansas, Mr. Heck of Nevada, Mr. McKeon, Mrs. McCarthy of
New York, Mr. Carney, Mr. Welch, Ms. Esty, Ms. Eshoo, Mr. Kennedy, Mr.
Sensenbrenner, Mr. Joyce, Mr. Kline, Mr. Walz, Mrs. Bustos, Mr. Holt,
Mr. Barletta, Ms. Bass, and Ms. Duckworth

June 23, 2014

Reported with an amendment, committed to the Committee of the Whole
House on the State of the Union, and ordered to be printed
[Strike out all after the enacting clause and insert the part printed
in italic]
[For text of introduced bill, see copy of bill as introduced on May 9,
2014]

_______________________________________________________________________

A BILL

To reauthorize certain provisions of the Public Health Service Act
relating to autism, and for other purposes.

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 “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”.
Union Calendar No. 365

113th CONGRESS

2d Session

H. R. 4631

[Report No. 113-490]

_______________________________________________________________________

A BILL

To reauthorize certain provisions of the Public Health Service Act
relating to autism, and for other purposes.

_______________________________________________________________________

June 23, 2014

Reported with an amendment, committed to the Committee of the Whole
House on the State of the Union, and ordered to be printed


By Matt Carey

note: I serve as a public member to the IACC but all comments are my own.

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One Response to “Updated House version of Autism Collaboration, Accountability, Research, Education, and Support Act of 2014”

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