The proposed Autism CARES Act of 2014 (Senate Bill 2449)

21 Jun

S.2449 – Autism CARES Act of 2014 has been introduced as is available for reviewing. CARES stands for “Autism Collaboration, Accountability, Research, Education, and Support” and is the Senate version of the bill to extend planning and funding for autism specific research past September 2014 when the current bill expires.

The bill was introduced by Senator Robert Menendez and Michael Enzi and so far has two more co-sponsors

Sen. Enzi, Michael B. [R-WY]
Sen. Kirk, Mark Steven [R-IL]
Sen. Franken, Al [D-MN]

The text of the proposed bill is copied below. The bill re-authorizes the previous law, extending the dates and funding requested as well as makes some changes.

1) the title is changed from the previous “Combating Autism Act” Combating is noted in the new bill where the word is being stricken from the previous law.

2) the bill would extend the law until 2019.

3) the Interagency Autism Coordinating Commitee would stay as the advisory/coordinating vehicle for autism research

4) The bill designates that the Secretary of the Department of Health and Human Services will chose someone within HHS to oversee autism research, including implementing the IACC’s Strategic Plan and insuring that research is not unnecessarily duplicative.

5) In a number of instances adults are specifically mentioned in the new bill. For example, “by inserting “for children and adults” after “reporting of State epidemiological data””. I.e. epidemiological data will in the future include adults.

6) The IACC will have between 1/3 and 1/2 members who are public representatives. I.e. a minority but a sizable minority will be public members.

7) If I read this correctly, IACC members will continue to be appointed by the Secretary of HHS. They will serve for 4 years, and can be renewed. If a member resigns, s/he will be replaced by someone chosen by the same method as the other appointees.

8) The IACC will continue to produce the Strategic Plan and a Summary of Advances in autism research.

9) In addition, the Secretary of HHS will be required to produce a report “Report on Young Adults and Transitioning Youth”

10) Funding levels–amounts which the bill authorizes to be appropriated–will increase from $161M/year to $190M/year.

This bill must be reconciled with the House bill (H.R.4631, the Combating Autism Reauthorization Act of 2014), pass both houses and get signed by the President. So far, this bill is progressing faster than the previous re-authorization. In that case, the bill did not get passed until the congress was almost out of session.

Here is the bill:

[Congressional Bills 113th Congress]
[From the U.S. Government Printing Office]
[S. 2449 Introduced in Senate (IS)]

113th CONGRESS
2d Session
S. 2449

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

_______________________________________________________________________

IN THE SENATE OF THE UNITED STATES

June 9, 2014

Mr. Menendez (for himself and Mr. Enzi) introduced the following bill;
which was read twice and referred to the Committee on Health,
Education, Labor, and Pensions

_______________________________________________________________________

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 individual 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 heading and
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 term.
“(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 powers 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”;
(6) in subsection (a)(2) (as so redesignated)–
(A) in subparagraph (A), (as so redesignated), by
striking “Combating Autism Act of 2006” and inserting
“the Autism CARES Act of 2014”;
(B) in subparagraph (B) (as so redesignated), by
striking “particular provision 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, how this average time
varies across populations subgroups” after
“disabilities”;
(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.”; 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 of
Health and Human Services, 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) 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;
“(B) demographic characteristics of youth
transitioning from school-based to community-based
supports;
“(C) proposals on establishing best practices
guidelines to ensure–
“(i) interdisciplinary coordination
between all relevant services providers
receiving Federal funding;
“(ii) coordination with transitioning
youth and the family of such transitioning
youth; and
“(iii) the inclusion of the transitioning
youth’s Individualized Education Program 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 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 relevant
service providers 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”.


By Matt Carey

note: I serve on the IACC as a public member but my comments here and elsewhere are my own.

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