IB 

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. 


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1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Christopher and Dana 

5 Reeve Paralysis Act’’. 

6 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. 

7 TITLE I—PARALYSIS RESEARCH 

8 SEC. 101. ACTIVITIES OF THE NATIONAL INSTITUTES OF 

9 HEALTH WITH RESPECT TO RESEARCH ON 

10 PARALYSIS. 

11 (a) COORDINATION.—The Director of the National 

12 Institutes of Health (referred to in this Act as the ‘‘Direc13 tor’’), pursuant to the general authority of the Director, 

14 may develop mechanisms to coordinate the paralysis re15 search and rehabilitation activities of the Institutes and 

16 Centers of the National Institutes of Health in order to 


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1 further advance such activities and avoid duplication of 

2 activities. 

3 (b) CHRISTOPHER AND DANA REEVE PARALYSIS RE4 SEARCH CONSORTIA.— 

5 (1) IN GENERAL.—The Director may make 

6 awards of grants to public or private entities to pay 

7 all or part of the cost of planning, establishing, im8 proving, and providing basic operating support for 

9 consortia in paralysis research. The Director shall 

10 designate each consortium funded through such 

11 grants as a Christopher and Dana Reeve Paralysis 

12 Research Consortium. 

13 (2) RESEARCH.—Each consortium under para14 graph (1)— 

15 (A) may conduct basic, translational, and 

16 clinical paralysis research; 

17 (B) may focus on advancing treatments 

18 and developing therapies in paralysis research; 

19 (C) may focus on one or more forms of pa20 ralysis that result from central nervous system 

21 trauma or stroke; 

22 (D) may facilitate and enhance the dis23 semination of clinical and scientific findings; 

24 and 


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1 (E) may replicate the findings of consortia 

2 members or other researchers for scientific and 

3 translational purposes. 

4 (3) COORDINATION OF CONSORTIA; REPORTS.— 

5 The Director may, as appropriate, provide for the 

6 coordination of information among consortia under 

7 paragraph (1) and ensure regular communication 

8 among members of the consortia, and may require 

9 the periodic preparation of reports on the activities 

10 of the consortia and the submission of the reports to 

11 the Director. 

12 (4) ORGANIZATION OF CONSORTIA.—Each con13 sortium under paragraph (1) may use the facilities 

14 of a single lead institution, or be formed from sev15 eral cooperating institutions, meeting such require16 ments as may be prescribed by the Director. 

17 (c) PUBLIC INPUT.—The Director may provide for a 

18 mechanism to educate and disseminate information on the 

19 existing and planned programs and research activities of 

20 the National Institutes of Health with respect to paralysis 

21 and through which the Director can receive comments 

22 from the public regarding such programs and activities. 


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1 TITLE II—PARALYSIS REHABILI2 TATION RESEARCH AND CARE 

3 SEC. 201. ACTIVITIES OF THE NATIONAL INSTITUTES OF 

4 HEALTH WITH RESPECT TO RESEARCH WITH 

5 IMPLICATIONS FOR ENHANCING DAILY FUNC6 TION FOR PERSONS WITH PARALYSIS. 

7 (a) IN GENERAL.—The Director, pursuant to the 

8 general authority of the Director, may make awards of 

9 grants to public or private entities to pay all or part of 

10 the costs of planning, establishing, improving, and pro11 viding basic operating support to multicenter networks of 

12 clinical sites that will collaborate to design clinical reha13 bilitation intervention protocols and measures of outcomes 

14 on one or more forms of paralysis that result from central 

15 nervous system trauma, disorders, or stroke, or any com16 bination of such conditions. 

17 (b) RESEARCH.—A multicenter network of clinical 

18 sites funded through this section may— 

19 (1) focus on areas of key scientific concern, in20 cluding— 

21 (A) improving functional mobility; 

22 (B) promoting behavioral adaptation to 

23 functional losses, especially to prevent sec24 ondary complications; 


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1 (C) assessing the efficacy and outcomes of 

2 medical rehabilitation therapies and practices 

3 and assisting technologies; 

4 (D) developing improved assistive tech5 nology to improve function and independence; 

6 and 

7 (E) understanding whole body system re8 sponses to physical impairments, disabilities, 

9 and societal and functional limitations; and 

10 (2) replicate the findings of network members 

11 or other researchers for scientific and translation 

12 purposes. 

13 (c) COORDINATION OF CLINICAL TRIALS NETWORKS; 

14 REPORTS.—The Director may, as appropriate, provide for 

15 the coordination of information among networks funded 

16 through this section and ensure regular communication 

17 among members of the networks, and may require the 

18 periodic preparation of reports on the activities of the net19 works and submission of reports to the Director. 


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1 TITLE III—IMPROVING QUALITY 

2 OF LIFE FOR PERSONS WITH 

3 PARALYSIS AND OTHER PHYS4 ICAL DISABILITIES 

5 SEC. 301. PROGRAMS TO IMPROVE QUALITY OF LIFE FOR 

6 PERSONS WITH PARALYSIS AND OTHER 

7 PHYSICAL DISABILITIES. 

8 (a) IN GENERAL.—The Secretary of Health and 

9 Human Services (in this title referred to as the ‘‘Sec10 retary’’) may study the unique health challenges associ11 ated with paralysis and other physical disabilities and 

12 carry out projects and interventions to improve the quality 

13 of life and long-term health status of persons with paral14 ysis and other physical disabilities. The Secretary may 

15 carry out such projects directly and through awards of 

16 grants or contracts. 

17 (b) CERTAIN ACTIVITIES.—Activities under sub18 section (a) may include— 

19 (1) the development of a national paralysis and 

20 physical disability quality of life action plan, to pro21 mote health and wellness in order to enhance full 

22 participation, independent living, self-sufficiency, 

23 and equality of opportunity in partnership with vol24 untary health agencies focused on paralysis and 

25 other physical disabilities, to be carried out in coVerDate Nov 24 2008 00:29 Mar 24, 2009 Jkt 079200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H307.RH H307

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1 ordination with the State-based Disability and 

2 Health Program of the Centers for Disease Control 

3 and Prevention; 

4 (2) support for programs to disseminate infor5 mation involving care and rehabilitation options and 

6 quality of life grant programs supportive of commu7 nity-based programs and support systems for per8 sons with paralysis and other physical disabilities; 

9 (3) in collaboration with other centers and na10 tional voluntary health agencies, the establishment 

11 of a population-based database that may be used for 

12 longitudinal and other research on paralysis and 

13 other disabling conditions; and 

14 (4) the replication and translation of best prac15 tices and the sharing of information across States, 

16 as well as the development of comprehensive, unique, 

17 and innovative programs, services, and demonstra18 tions within existing State-based disability and 

19 health programs of the Centers for Disease Control 

20 and Prevention which are designed to support and 

21 advance quality of life programs for persons living 

22 with paralysis and other physical disabilities focus23 ing on— 

24 (A) caregiver education; 


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1 (B) promoting proper nutrition, increasing 

2 physical activity, and reducing tobacco use; 

3 (C) education and awareness programs for 

4 health care providers; 

5 (D) prevention of secondary complications; 

6 (E) home- and community-based interven7 tions; 

8 (F) coordinating services and removing 

9 barriers that prevent full participation and inte10 gration into the community; and 

11 (G) recognizing the unique needs of under12 served populations. 

13 (c) GRANTS.—The Secretary may award grants in ac14 cordance with the following: 

15 (1) To State and local health and disability 

16 agencies for the purpose of— 

17 (A) establishing a population-based data18 base that may be used for longitudinal and 

19 other research on paralysis and other disabling 

20 conditions; 

21 (B) developing comprehensive paralysis 

22 and other physical disability action plans and 

23 activities focused on the items listed in sub24 section (b)(4); 


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1 (C) assisting State-based programs in es2 tablishing and implementing partnerships and 

3 collaborations that maximize the input and sup4 port of people with paralysis and other physical 

5 disabilities and their constituent organizations; 

6 (D) coordinating paralysis and physical 

7 disability activities with existing State-based 

8 disability and health programs; 

9 (E) providing education and training op10 portunities and programs for health profes11 sionals and allied caregivers; and 

12 (F) developing, testing, evaluating, and 

13 replicating effective intervention programs to 

14 maintain or improve health and quality of life. 

15 (2) To private health and disability organiza16 tions for the purpose of— 

17 (A) disseminating information to the pub18 lic; 

19 (B) improving access to services for per20 sons living with paralysis and other physical 

21 disabilities and their caregivers; 

22 (C) testing model intervention programs to 

23 improve health and quality of life; and 

24 (D) coordinating existing services with 

25 State-based disability and health programs. 


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1 (d) COORDINATION OF ACTIVITIES.—The Secretary 

2 shall ensure that activities under this section are coordi3 nated as appropriate by the agencies of the Department 

4 of Health and Human Services. 

5 (e) AUTHORIZATION OF APPROPRIATIONS.—For the 

6 purpose of carrying out this section, there is authorized 

7 to be appropriated $25,000,000 for each of fiscal years 

8 2010 through 2013. 


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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 

ical disabilities, and for other purposes. for persons living with paralysis and other physto improve rehabilitation and the quality of life 

MARCH 23, 2009 

Committed to the Committee of the Whole House on the 

State of the Union and ordered to be printed 


wwoods2 on PRODPC68 with BILLS