[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 307 Introduced in House (IH)]
111th CONGRESS
1st Session
H. R. 307
To enhance and further research into paralysis and to improve
rehabilitation and the quality of life for persons living with
paralysis and other physical disabilities, and for other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
January 8, 2009
Ms. Baldwin (for herself, Mrs. Bono Mack, Mr. Langevin, and Mr.
Bilirakis) introduced the following bill; which was referred to the
Committee on Energy and Commerce
_______________________________________________________________________
A BILL
To enhance and further research into paralysis and to improve
rehabilitation and the quality of life for persons living with
paralysis and other physical disabilities, 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 ``Christopher and Dana Reeve Paralysis
Act''.
SEC. 2. TABLE OF CONTENTS.
Sec. 1. Short title.
Sec. 2. Table of contents.
TITLE I--PARALYSIS RESEARCH
Sec. 101. Activities of the National Institutes of Health with respect
to research on paralysis.
TITLE II--PARALYSIS REHABILITATION RESEARCH AND CARE
Sec. 201. Activities of the National Institutes of Health with respect
to research with implications for enhancing
daily function for persons with paralysis.
TITLE III--IMPROVING QUALITY OF LIFE FOR PERSONS WITH PARALYSIS AND
OTHER PHYSICAL DISABILITIES
Sec. 301. Programs to improve quality of life for persons with
paralysis and other physical disabilities.
TITLE I--PARALYSIS RESEARCH
SEC. 101. ACTIVITIES OF THE NATIONAL INSTITUTES OF HEALTH WITH RESPECT
TO RESEARCH ON PARALYSIS.
(a) Coordination.--The Director of the National Institutes of
Health (referred to in this Act as the ``Director''), pursuant to the
general authority of the Director, may develop mechanisms to coordinate
the paralysis research and rehabilitation activities of the Institutes
and Centers of the National Institutes of Health in order to further
advance such activities and avoid duplication of activities.
(b) Christopher and Dana Reeve Paralysis Research Consortia.--
(1) In general.--The Director may make awards of grants to
public or private entities to pay all or part of the cost of
planning, establishing, improving, and providing basic
operating support for consortia in paralysis research. The
Director shall designate each consortium funded through such
grants as a Christopher and Dana Reeve Paralysis Research
Consortium.
(2) Research.--Each consortium under paragraph (1)--
(A) may conduct basic, translational, and clinical
paralysis research;
(B) may focus on advancing treatments and
developing therapies in paralysis research;
(C) may focus on one or more forms of paralysis
that result from central nervous system trauma or
stroke;
(D) may facilitate and enhance the dissemination of
clinical and scientific findings; and
(E) may replicate the findings of consortia members
or other researchers for scientific and translational
purposes.
(3) Coordination of consortia; reports.--The Director may,
as appropriate, provide for the coordination of information
among consortia under paragraph (1) and ensure regular
communication among members of the consortia, and may require
the periodic preparation of reports on the activities of the
consortia and the submission of the reports to the Director.
(4) Organization of consortia.--Each consortium under
paragraph (1) may use the facilities of a single lead
institution, or be formed from several cooperating
institutions, meeting such requirements as may be prescribed by
the Director.
(c) Public Input.--The Director may provide for a mechanism to
educate and disseminate information on the existing and planned
programs and research activities of the National Institutes of Health
with respect to paralysis and through which the Director can receive
comments from the public regarding such programs and activities.
TITLE II--PARALYSIS REHABILITATION RESEARCH AND CARE
SEC. 201. ACTIVITIES OF THE NATIONAL INSTITUTES OF HEALTH WITH RESPECT
TO RESEARCH WITH IMPLICATIONS FOR ENHANCING DAILY
FUNCTION FOR PERSONS WITH PARALYSIS.
(a) In General.--The Director, pursuant to the general authority of
the Director, may make awards of grants to public or private entities
to pay all or part of the costs of planning, establishing, improving,
and providing basic operating support to multicenter networks of
clinical sites that will collaborate to design clinical rehabilitation
intervention protocols and measures of outcomes on one or more forms of
paralysis that result from central nervous system trauma, disorders, or
stroke, or any combination of such conditions.
(b) Research.--A multicenter network of clinical sites funded
through this section may--
(1) focus on areas of key scientific concern, including--
(A) improving functional mobility;
(B) promoting behavioral adaptation to functional
losses, especially to prevent secondary complications;
(C) assessing the efficacy and outcomes of medical
rehabilitation therapies and practices and assisting
technologies;
(D) developing improved assistive technology to
improve function and independence; and
(E) understanding whole body system responses to
physical impairments, disabilities, and societal and
functional limitations; and
(2) replicate the findings of network members or other
researchers for scientific and translation purposes.
(c) Coordination of Clinical Trials Networks; Reports.--The
Director may, as appropriate, provide for the coordination of
information among networks funded through this section and ensure
regular communication among members of the networks, and may require
the periodic preparation of reports on the activities of the networks
and submission of reports to the Director.
TITLE III--IMPROVING QUALITY OF LIFE FOR PERSONS WITH PARALYSIS AND
OTHER PHYSICAL DISABILITIES
SEC. 301. PROGRAMS TO IMPROVE QUALITY OF LIFE FOR PERSONS WITH
PARALYSIS AND OTHER PHYSICAL DISABILITIES.
(a) In General.--The Secretary of Health and Human Services (in
this title referred to as the ``Secretary'') may study the unique
health challenges associated with paralysis and other physical
disabilities and carry out projects and interventions to improve the
quality of life and long-term health status of persons with paralysis
and other physical disabilities. The Secretary may carry out such
projects directly and through awards of grants or contracts.
(b) Certain Activities.--Activities under subsection (a) may
include--
(1) the development of a national paralysis and physical
disability quality of life action plan, to promote health and
wellness in order to enhance full participation, independent
living, self-sufficiency, and equality of opportunity in
partnership with voluntary health agencies focused on paralysis
and other physical disabilities, to be carried out in
coordination with the State-based Disability and Health Program
of the Centers for Disease Control and Prevention;
(2) support for programs to disseminate information
involving care and rehabilitation options and quality of life
grant programs supportive of community-based programs and
support systems for persons with paralysis and other physical
disabilities;
(3) in collaboration with other centers and national
voluntary health agencies, the establishment of a population-
based database that may be used for longitudinal and other
research on paralysis and other disabling conditions; and
(4) the replication and translation of best practices and
the sharing of information across States, as well as the
development of comprehensive, unique, and innovative programs,
services, and demonstrations within existing State-based
disability and health programs of the Centers for Disease
Control and Prevention which are designed to support and
advance quality of life programs for persons living with
paralysis and other physical disabilities focusing on--
(A) caregiver education;
(B) promoting proper nutrition, increasing physical
activity, and reducing tobacco use;
(C) education and awareness programs for health
care providers;
(D) prevention of secondary complications;
(E) home- and community-based interventions;
(F) coordinating services and removing barriers
that prevent full participation and integration into
the community; and
(G) recognizing the unique needs of underserved
populations.
(c) Grants.--The Secretary may award grants in accordance with the
following:
(1) To State and local health and disability agencies for
the purpose of--
(A) establishing a population-based database that
may be used for longitudinal and other research on
paralysis and other disabling conditions;
(B) developing comprehensive paralysis and other
physical disability action plans and activities focused
on the items listed in subsection (b)(4);
(C) assisting State-based programs in establishing
and implementing partnerships and collaborations that
maximize the input and support of people with paralysis
and other physical disabilities and their constituent
organizations;
(D) coordinating paralysis and physical disability
activities with existing State-based disability and
health programs;
(E) providing education and training opportunities
and programs for health professionals and allied
caregivers; and
(F) developing, testing, evaluating, and
replicating effective intervention programs to maintain
or improve health and quality of life.
(2) To private health and disability organizations for the
purpose of--
(A) disseminating information to the public;
(B) improving access to services for persons living
with paralysis and other physical disabilities and
their caregivers;
(C) testing model intervention programs to improve
health and quality of life; and
(D) coordinating existing services with State-based
disability and health programs.
(d) Coordination of Activities.--The Secretary shall ensure that
activities under this section are coordinated as appropriate by the
agencies of the Department of Health and Human Services.
(e) Authorization of Appropriations.--For the purpose of carrying
out this section, there is authorized to be appropriated $25,000,000
for each of fiscal years 2010 through 2013.
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