111 HR 307 IH: Christopher and Dana Reeve Paralysis Act
U.S. House of Representatives
2009-01-08
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EN
Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain.
1.This Act may be cited as the
Christopher and Dana Reeve Paralysis Act
.
2.
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.
<enum>I</enum><header>Paralysis
research</header>
<section id="HB59AB75DA4B14591B128ABCF11ADC0D"><enum>101.</enum><header>Activities of
the National Institutes of Health with respect to research on
paralysis</header>
<subsection id="HA1A1DE3CCD9F436089F9E9DCE295D32C"><enum>(a)</enum><header>Coordination</header><text>The
Director of the National Institutes of Health (referred to in this Act as the
<quote>Director</quote>), 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.</text>
</subsection><subsection id="H1A13F9D7193E4A539BBA89A6D873204B"><enum>(b)</enum><header>Christopher and
Dana Reeve paralysis research consortia</header>
<paragraph id="HB6336F414AD849D8BAD34413BA533DB6"><enum>(1)</enum><header>In
general</header><text>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.</text>
</paragraph><paragraph id="H4BA2D17405934CB09F15DE9100FA2B24"><enum>(2)</enum><header>Research</header><text>Each
consortium under paragraph (1)—</text>
<subparagraph id="H3646F2ABB9534B348E17C8D29BD11E6C"><enum>(A)</enum><text>may conduct basic,
translational, and clinical paralysis research;</text>
</subparagraph><subparagraph id="H5C15041CBF434B1F819C54CD9E77906D"><enum>(B)</enum><text>may focus on
advancing treatments and developing therapies in paralysis research;</text>
</subparagraph><subparagraph id="H0265A8E9C04C4CF6A5C7A85C806500C2"><enum>(C)</enum><text>may focus on one
or more forms of paralysis that result from central nervous system trauma or
stroke;</text>
</subparagraph><subparagraph id="HFFE14C20DA21423DB79B00B3F54567D0"><enum>(D)</enum><text>may facilitate and
enhance the dissemination of clinical and scientific findings; and</text>
</subparagraph><subparagraph id="H4174BE9619584B838F36CD99D1A1F4AB"><enum>(E)</enum><text>may replicate the
findings of consortia members or other researchers for scientific and
translational purposes.</text>
</subparagraph></paragraph><paragraph id="HF140BE1457E14EF5BD436362905D1E5D"><enum>(3)</enum><header>Coordination of
consortia; reports</header><text>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.</text>
</paragraph><paragraph id="HE08C9BA8D3BF42DCAD2B663189FCD65"><enum>(4)</enum><header>Organization of
consortia</header><text>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.</text>
</paragraph></subsection><subsection id="H30E37E30720E416F98BC69E6D972A7DA"><enum>(c)</enum><header>Public
input</header><text>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.</text>
</subsection></section><enum>II</enum><header>Paralysis
rehabilitation research and care</header>
<section id="H617800E24C8F47ACB59550736D367700"><enum>201.</enum><header>Activities of
the National Institutes of Health with respect to research with implications
for enhancing daily function for persons with paralysis</header>
<subsection id="H6A27EE96E594486DBF00867D2FFD431B"><enum>(a)</enum><header>In
general</header><text>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.</text>
</subsection><subsection id="HAD449BA493EB4E89A0DAA62574C52EB9"><enum>(b)</enum><header>Research</header><text>A
multicenter network of clinical sites funded through this section may—</text>
<paragraph id="HC313448CA7744BAD8EAAB90020EC9045"><enum>(1)</enum><text>focus on areas of
key scientific concern, including—</text>
<subparagraph id="H22C305D2239B46A5B16612FD41FC6200"><enum>(A)</enum><text>improving
functional mobility;</text>
</subparagraph><subparagraph id="H67EAB2252A8540D282D03E78A149138C"><enum>(B)</enum><text>promoting
behavioral adaptation to functional losses, especially to prevent secondary
complications;</text>
</subparagraph><subparagraph id="H36D228114FFF42A6BA6B665E66CA1075"><enum>(C)</enum><text>assessing the
efficacy and outcomes of medical rehabilitation therapies and practices and
assisting technologies;</text>
</subparagraph><subparagraph id="H9525BAFC6A6F4D6E867341F7C6078BDE"><enum>(D)</enum><text>developing
improved assistive technology to improve function and independence; and</text>
</subparagraph><subparagraph id="H311FF53AC163426A88E040C932445EA7"><enum>(E)</enum><text>understanding
whole body system responses to physical impairments, disabilities, and societal
and functional limitations; and</text>
</subparagraph></paragraph><paragraph id="H395D1B88008D412DBFEDFECD9C126940"><enum>(2)</enum><text>replicate the
findings of network members or other researchers for scientific and translation
purposes.</text>
</paragraph></subsection><subsection id="HCD00C9A4014046DD008EA21DB3DCEDA8"><enum>(c)</enum><header>Coordination of
clinical trials networks; reports</header><text>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.</text>
</subsection></section><enum>III</enum><header>Improving
quality of life for persons with paralysis and other physical
disabilities</header>
<section id="HE9D483E8F3E044148775E82B90008DEA"><enum>301.</enum><header>Programs to
improve quality of life for persons with paralysis and other physical
disabilities</header>
<subsection id="HF2829B49546A437F89243D29EBC35884"><enum>(a)</enum><header>In
general</header><text>The Secretary of Health and Human Services (in this title
referred to as the <quote>Secretary</quote>) 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.</text>
</subsection><subsection id="H041DA25405B24D31882178AB24E19D16"><enum>(b)</enum><header>Certain
activities</header><text>Activities under subsection (a) may include—</text>
<paragraph id="HB768BB3E334C481F8F7881FA51A5A81E"><enum>(1)</enum><text>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;</text>
</paragraph><paragraph id="H50EA6F8285D1437C8FAFB865B2741C68"><enum>(2)</enum><text>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;</text>
</paragraph><paragraph id="HDB18927C95CC40B8B8347982B565C852"><enum>(3)</enum><text>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</text>
</paragraph><paragraph id="H0904064887664160A4BAA23D53F4C00"><enum>(4)</enum><text>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—</text>
<subparagraph id="H8E94308080BE45E39E2205F4E4AE3D2"><enum>(A)</enum><text>caregiver
education;</text>
</subparagraph><subparagraph id="HBB113A1E41684B12B2AC00EA8D858481"><enum>(B)</enum><text>promoting proper
nutrition, increasing physical activity, and reducing tobacco use;</text>
</subparagraph><subparagraph id="H8883C50EE05F427B98D040D3B78FFE81"><enum>(C)</enum><text>education and
awareness programs for health care providers;</text>
</subparagraph><subparagraph id="H83D04EB6AA2E4B9D83AC2019002E2572"><enum>(D)</enum><text>prevention of
secondary complications;</text>
</subparagraph><subparagraph id="H2511555820BE401B9155B47E03DDAE83"><enum>(E)</enum><text>home- and
community-based interventions;</text>
</subparagraph><subparagraph id="HCAA5B90BF84645AEA1F3043355EB7B29"><enum>(F)</enum><text>coordinating
services and removing barriers that prevent full participation and integration
into the community; and</text>
</subparagraph><subparagraph id="H02E4AF0ABD764796B6ED511790A24200"><enum>(G)</enum><text>recognizing the
unique needs of underserved populations.</text>
</subparagraph></paragraph></subsection><subsection id="H113662ADCEE7421BAAEBCB039230008E"><enum>(c)</enum><header>Grants</header><text>The
Secretary may award grants in accordance with the following:</text>
<paragraph id="H19D3FF934CCB4AE498418DF525B508F1"><enum>(1)</enum><text>To State and local
health and disability agencies for the purpose of—</text>
<subparagraph id="H0196BAAAD1B049E191F0ABCB24DF2750"><enum>(A)</enum><text>establishing a
population-based database that may be used for longitudinal and other research
on paralysis and other disabling conditions;</text>
</subparagraph><subparagraph id="H22EDC6100F4D4A07928C028D05771393"><enum>(B)</enum><text>developing
comprehensive paralysis and other physical disability action plans and
activities focused on the items listed in subsection (b)(4);</text>
</subparagraph><subparagraph id="H025329BA8B5B48BC9BFA00A0010C04"><enum>(C)</enum><text>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;</text>
</subparagraph><subparagraph id="H17D38A2C0935408C8D702229A8075504"><enum>(D)</enum><text>coordinating
paralysis and physical disability activities with existing State-based
disability and health programs;</text>
</subparagraph><subparagraph id="H533FB2570177433989EC699B88CC2F2B"><enum>(E)</enum><text>providing
education and training opportunities and programs for health professionals and
allied caregivers; and</text>
</subparagraph><subparagraph id="H4BC1E85744FF4309BFA2A6FE934FD500"><enum>(F)</enum><text>developing,
testing, evaluating, and replicating effective intervention programs to
maintain or improve health and quality of life.</text>
</subparagraph></paragraph><paragraph id="H54199CD4897444D0918BC317D2E52C5"><enum>(2)</enum><text>To
private health and disability organizations for the purpose of—</text>
<subparagraph id="H852A64A92AF9414E9159F41DCC8F91B5"><enum>(A)</enum><text>disseminating
information to the public;</text>
</subparagraph><subparagraph id="H0979A0A678EF4EEFB609279835EE313C"><enum>(B)</enum><text>improving access
to services for persons living with paralysis and other physical disabilities
and their caregivers;</text>
</subparagraph><subparagraph id="H8446164428D34B3E8370BAF6A0670300"><enum>(C)</enum><text>testing model
intervention programs to improve health and quality of life; and</text>
</subparagraph><subparagraph id="HC2FBBCDC69274681A036AB5C65000416"><enum>(D)</enum><text>coordinating
existing services with State-based disability and health programs.</text>
</subparagraph></paragraph></subsection><subsection id="H4160C797CAFB44768E00E773CDD9B1FA"><enum>(d)</enum><header>Coordination of
activities</header><text>The Secretary shall ensure that activities under this
section are coordinated as appropriate by the agencies of the Department of
Health and Human Services.</text>
</subsection><subsection commented="no" display-inline="no-display-inline" id="HC8E76A5D74A244799189BFDA3044EF86"><enum>(e)</enum><header>Authorization of
appropriations</header><text display-inline="yes-display-inline">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.</text>
</subsection></section>