[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 307 Reported in House (RH)]

                                                  Union Calendar No. 15
111th CONGRESS
  1st Session
                                H. R. 307

                          [Report No. 111-45]

     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

                             March 23, 2009

Additional sponsors: Ms. Herseth Sandlin, Mr. Gordon of Tennessee, Ms. 
  Sutton, Mr. Markey of Massachusetts, Mr. Inslee, and Ms. Schakowsky

                             March 23, 2009

Committed to the Committee of the Whole House on the State of the Union 
                       and ordered to be printed

_______________________________________________________________________

                                 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.
                                                  Union Calendar No. 15

111th CONGRESS

  1st Session

                               H. R. 307

                          [Report No. 111-45]

_______________________________________________________________________

                                 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.

_______________________________________________________________________

                             March 23, 2009

Committed to the Committee of the Whole House on the State of the Union 
                       and ordered to be printed