I 

108TH CONGRESS 

1ST SESSION H. R. 1998

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 

MAY 7, 2003

Mr. BILIRAKIS (for himself, Mr. BROWN of Ohio, Mr. YOUNG of Florida, Mr. 

LANGEVIN, Mr. HOUGHTON, Mr. HOYER, Mr. GREENWOOD, Mr. WAXMAN, Mr. FOSSELLA, Mr. TOWNS, Mr. ENGEL, Mr. STRICKLAND, Mr. 

RUSH, Mr. EVANS, and Mr. FILNER) introduced the following bill; which 

was referred to the Committee on Energy and Commerce, and in addition 

to the Committee on Veterans’ Affairs, for a period to be subsequently 

determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned 

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.

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 Reeve Pa5 ralysis Act’’. 
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1 SEC. 2. TABLE OF CONTENTS.

Sec. 1. Short title. 

Sec. 2. Table of contents. 

TITLE I—PARALYSIS RESEARCH 

Sec. 101. Expansion and coordination of activities of the National Institutes of 

Health with respect to research on paralysis. 

TITLE II—PARALYSIS REHABILITATION RESEARCH AND CARE 

Sec. 201. Expansion and coordination of 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 IV—ACTIVITIES OF THE DEPARTMENT OF VETERANS 

AFFAIRS 

Sec. 401. Expansion and coordination of activities of the Veterans Health Administration.

2 TITLE I—PARALYSIS RESEARCH 

3 SEC. 101. EXPANSION AND COORDINATION OF ACTIVITIES 

4 OF THE NATIONAL INSTITUTES OF HEALTH 

5 WITH RESPECT TO RESEARCH ON PARALYSIS. 

6 (a) IN GENERAL.—

7 (1) ENHANCED COORDINATION OF ACTIVI8 TIES.—The Director of the National Institutes of 

9 Health (in this section referred to as the ‘‘Director’’) 

10 may expand and coordinate the activities of such In11 stitutes with respect to research on paralysis. 

12 (2) ADMINISTRATION OF PROGRAM; COLLABO13 RATION AMONG AGENCIES.—The Director shall carry 

14 out this section acting through the Director of the 
3

•HR 1998 IH 

1 National Institute of Neurological Disorders and 

2 Stroke (in this section referred to as the ‘‘Institute’’) 

3 and in collaboration with any other agencies that the 

4 Director determines appropriate. 

5 (b) COORDINATION.—

6 (1) IN GENERAL.—The Director may develop 

7 mechanisms to coordinate the paralysis research and 

8 rehabilitation activities of the agencies of the Na9 tional Institutes of Health in order to further ad10 vance such activities and avoid duplication of activi11 ties. 

12 (2) REPORT.—Not later than December 1, 

13 2003, the Director shall prepare a report to Con14 gress that provides a description of the paralysis ac15 tivities of the Institute and strategies for future ac16 tivities. 

17 (c) CHRISTOPHER REEVE PARALYSIS RESEARCH

18 CONSORTIA.—

19 (1) IN GENERAL.—The Director may under 

20 subsection (a)(1) make awards of grants to public or 

21 nonprofit private entities to pay all or part of the 

22 cost of planning, establishing, improving, and pro23 viding basic operating support for consortia in paral24 ysis research. The Director shall designate each con-
4

•HR 1998 IH 

1 sortium funded under grants as a Christopher Reeve 

2 Paralysis Research Consortium. 

3 (2) RESEARCH.—Each consortium under para4 graph (1)—

5 (A) may conduct basic and clinical paral6 ysis research; 

7 (B) may focus on advancing treatments 

8 and developing therapies in paralysis research; 

9 (C) may focus on one or more forms of pa10 ralysis that result from central nervous system 

11 trauma or stroke; 

12 (D) may facilitate and enhance the dis13 semination of clinical and scientific findings; 

14 and 

15 (E ) may replicate the findings of consortia 

16 members for scientific and translational pur17 poses. 

18 (3) COORDINATION OF CONSORTIA; REPORTS.—

19 The Director may, as appropriate, provide for the 

20 coordination of information among consortia under 

21 paragraph (1) and ensure regular communication 

22 between members of the consortia, and may require 

23 the periodic preparation of reports on the activities 

24 of the consortia and the submission of the reports to 

25 the Director. 
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1 (4) ORGANIZATION OF CONSORTIA.—Each con2 sortium under paragraph (1) may use the facilities 

3 of a single lead institution, or be formed from sev4 eral cooperating institutions, meeting such require5 ments as may be prescribed by the Director. 

6 (d) PUBLIC INPUT.—The Director may under sub7 section (a)(1) provide for a mechanism to educate and dis8 seminate information on the existing and planned pro9 grams and research activities of the National Institutes 

10 of Health with respect to paralysis and through which the 

11 Director can receive comments from the public regarding 

12 such programs and activities. 

13 (e) AUTHORIZATION OF APPROPRIATIONS.—For the 

14 purpose of carrying out this section, there are authorized 

15 to be appropriated such sums as may be necessary for 

16 each of the fiscal years 2004 through 2007. Amounts ap17 propriated under this subsection are in addition to any 

18 other amounts appropriated for such purpose.
6

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1 TITLE II—PARALYSIS REHABILI2 TATION RESEARCH AND CARE 

3 SEC. 201. EXPANSION AND COORDINATION OF ACTIVITIES 

4 OF THE NATIONAL INSTITUTES OF HEALTH 

5 WITH RESPECT TO RESEARCH WITH IMPLICA6 TIONS FOR ENHANCING DAILY FUNCTION 

7 FOR PERSONS WITH PARALYSIS. 

8 (a) IN GENERAL.—

9 (1) EXPANSION OF ACTIVITIES.—The Director 

10 of the National Institutes of Health (in this section 

11 referred to as the ‘‘Director’’) may expand and co12 ordinate the activities of such Institutes with respect 

13 to research with implications for enhancing daily 

14 function for people with paralysis. 

15 (2) ADMINISTRATION OF PROGRAM; COLLABO16 RATION AMONG AGENCIES.—The Director shall carry 

17 out this section acting through the Director of the 

18 National Institute on Child Health and Human De19 velopment and the National Center for Medical Re20 habilitation Research and in collaboration with the 

21 National Institute on Neurological Disorders and 

22 Stroke, the Centers for Disease Control and Preven23 tion, and any other agencies that the Director deter24 mines appropriate. 

25 (b) PARALYSIS CLINICAL TRIALS NETWORKS.—
7

•HR 1998 IH 

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

2 awards of grants to public or nonprofit private enti3 ties to pay all or part of the costs of planning, estab4 lishing, improving, and providing basic operating 

5 support to multicenter networks of clinical sites that 

6 will collaborate to design clinical rehabilitation inter7 vention protocols and measures of outcomes on one 

8 or more forms of paralysis that result from central 

9 nervous system trauma, disorders, or stroke, or any 

10 combination of such conditions. 

11 (2) RESEARCH.—Each multicenter clinical trial 

12 network may—

13 (A) focus on areas of key scientific con14 cern, including—

15 (i) improving functional mobility; 

16 (ii) promoting behavioral adaptation 

17 to functional losses, especially to prevent 

18 secondary complications; 

19 (iii) assessing the efficacy and out20 comes of medical rehabilitation therapies 

21 and practices and assistive technologies; 

22 (iv) developing improved assistive 

23 technology to improve function and inde24 pendence; and 
8

•HR 1998 IH 

1 (v) understanding whole body system 

2 responses to physical impairments, disabil3 ities, and societal and functional limita4 tions; and 

5 (B) replicate the findings of network mem6 bers for scientific and translation purposes. 

7 (3) COORDINATION OF CLINICAL TRIALS NET8 WORKS.—The Director may, as appropriate, provide 

9 for the coordination of information among networks 

10 and ensure regular communication between members 

11 of the networks and may require the periodic prepa12 ration of reports on the activities of the networks 

13 and submission of reports to the Director. 

14 (c) REPORT.—Not later than December 1, 2003, the 

15 Director shall submit to the Congress a report that pro16 vides a description of research activities with implications 

17 for enhancing daily function for persons with paralysis. 

18 (d) AUTHORIZATION OF APPROPRIATIONS.—For the 

19 purpose of carrying out this section, there are authorized 

20 to be appropriated such sums as may be necessary for 

21 each of the fiscal years 2004 through 2007. Amounts ap22 propriated under this subsection are in addition to any 

23 other amounts appropriated for such purpose. 
9

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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 Act referred to as the ‘‘Sec10 retary’’), acting through the Director of the Centers for 

11 Disease Control and Prevention, may study the unique 

12 health challenges associated with paralysis and other phys13 ical disabilities and carry out projects and interventions 

14 to improve the quality of life and long-term health status 

15 of persons with paralysis and other physical disabilities. 

16 The Secretary may carry out such projects directly and 

17 through awards of grants or contracts. 

18 (b) CERTAIN ACTIVITIES.—Activities under sub19 section (a) include—

20 (1) the development of a national paralysis and 

21 physical disability quality of life action plan, to pro22 mote health and wellness in order to enhance full 

23 participation, independent living, self-sufficiency and 

24 equality of opportunity in partnership with voluntary 

25 health agencies focused on paralysis and other phys-
10

•HR 1998 IH 

1 ical disabilities, to be carried out in coordination 

2 with the State-based Comprehensive Paralysis and 

3 Other Physical Disability Quality of Life Program of 

4 the Centers for Disease Control and Prevention; 

5 (2) support for programs to disseminate infor6 mation involving care and rehabilitation options and 

7 quality of life grant programs supportive of commu8 nity based programs and support systems for per9 sons with paralysis and other physical disabilities; 

10 (3) in collaboration with other centers and na11 tional voluntary health agencies, establish a hospital12 based paralysis registry and conduct relevant popu13 lation-based research; and 

14 (4) the development of comprehensive, unique 

15 and innovative programs, services, and demonstra16 tions within existing State-based disability and 

17 health programs of the Centers for Disease Control 

18 and Prevention which are designed to support and 

19 advance quality of life programs for persons living 

20 with paralysis and other physical disabilities focus21 ing on—

22 (A) caregiver education; 

23 (B) physical activity; 

24 (C) education and awareness programs for 

25 health care providers;
11

•HR 1998 IH 

1 (D) prevention of secondary complications; 

2 (E) home and community-based interven3 tions; 

4 (F) coordinating services and removing 

5 barriers that prevent full participation and inte6 gration into the community; and 

7 (G) recognizing the unique needs of under8 served populations. 

9 (c) GRANTS.—The Secretary may award grants in ac10 cordance with the following: 

11 (1) To State and local health and disability 

12 agencies for the purpose of—

13 (A) establishing paralysis registries for the 

14 support of relevant population-based research; 

15 (B) developing comprehensive paralysis 

16 and other physical disability action plans and 

17 activities focused on the items listed in sub18 section (b)(4); 

19 (C) assisting State-based programs in es20 tablishing and implementing partnerships and 

21 collaborations that maximize the input and sup22 port of people with paralysis and other physical 

23 disabilities and their constituent organizations; 
12

•HR 1998 IH 

1 (D) coordinating paralysis and physical 

2 disability activities with existing state-based dis3 ability and health programs; 

4 (E) providing education and training op5 portunities and programs for health profes6 sionals and allied caregivers; and 

7 (F) developing, testing, evaluating, and 

8 replicating effective intervention programs to 

9 maintain or improve health and quality of life. 

10 (2) To nonprofit private health and disability 

11 organizations for the purpose of—

12 (A) disseminating information to the pub13 lic; 

14 (B) improving access to services for per15 sons living with paralysis and other physical 

16 disabilities and their caregivers; 

17 (C) testing model intervention programs to 

18 improve health and quality of life; and 

19 (D) coordinating existing services with 

20 state-based disability and health programs. 

21 (d) COORDINATION OF ACTIVITIES.—The Secretary 

22 shall assure that activities under this section are coordi23 nated as appropriate with other agencies of the Public 

24 Health Service. 
13

•HR 1998 IH 

1 (e) REPORT TO CONGRESS.—Not later than Decem2 ber 1, 2003, the Secretary shall submit to the Congress 

3 a report describing the results of the evaluation under sub4 section (a), and as applicable, the strategies developed 

5 under such subsection. 

6 (f) AUTHORIZATION OF APPROPRIATIONS.—For the 

7 purpose of carrying out this section, there are authorized 

8 to be appropriated such sums as may be necessary for 

9 each of the fiscal years 2004 through 2007.

10 TITLE IV—ACTIVITIES OF THE 

11 DEPARTMENT OF VETERANS 

12 AFFAIRS 

13 SEC. 401. EXPANSION AND COORDINATION OF ACTIVITIES 

14 OF THE VETERANS HEALTH ADMINISTRA15 TION. 

16 (a) IN GENERAL.—

17 (1) ENHANCED COORDINATION OF ACTIVI18 TIES.—The Secretary of Veterans Affairs may ex19 pand and coordinate activities of the Veterans 

20 Health Administration of the Department of Vet21 erans Affairs with respect to research on paralysis. 

22 (2) ADMINISTRATION OF PROGRAM.—The Sec23 retary shall carry out this section through the Direc24 tor of the Office of Research and Development of 

25 the Veterans Health Administration and in collabo-
14

•HR 1998 IH 

1 ration with the National Institutes of Health and 

2 other agencies the Secretary determines appropriate. 

3 (b) ESTABLISHMENT OF PARALYSIS RESEARCH, 

4 EDUCATION, AND CLINICAL CARE CENTER.—

5 (1) IN GENERAL.—The Secretary may establish 

6 within the Department of Veterans Affairs centers 

7 for paralysis research, education and clinical activi8 ties. Such centers shall be established at Depart9 ment medical centers through the award of grants to 

10 Department medical centers that are affiliated with 

11 medical schools or other organizations the Secretary 

12 considers appropriate. Such grants may be used to 

13 pay all or part of the cost of planning, establishing, 

14 improving, and providing basic operating support for 

15 such centers. 

16 (2) RESEARCH.—Each center under paragraph 

17 (1)—

18 (A) may focus on basic biomedical research 

19 on paralysis; 

20 (B) may focus on rehabilitation research 

21 on paralysis; 

22 (C) may focus on health services and clin23 ical trials for paralysis that result from central 

24 nervous system trauma or stroke; 
15

•HR 1998 IH 

1 (D) may facilitate and enhance the dis2 semination of clinical and scientific findings; 

3 and 

4 (E) may replicate the findings of centers 

5 for scientific and translational purposes. 

6 (3) COORDINATION OF CENTERS INTO CON7 SORTIA.—The Secretary may, as appropriate, pro8 vide for the linkage and coordination of information 

9 among centers under paragraph (1) in order to cre10 ate national consortia of centers and ensure regular 

11 communications between members of the centers. 

12 Each such consortium—

13 (A) may conduct large-scale clinical trials 

14 for greater statistical significance; 

15 (B) may operate in an interdisciplinary re16 habilitation team; 

17 (C) may focus on determining current 

18 standards of care and best practices; and 

19 (D) may identify research gaps for specific 

20 populations and identify future research needs. 

21 (4) ORGANIZATION OF CONSORTIA.—Each con22 sortium under paragraph (3) may use the facilities 

23 of a single lead institution, or be formed from sev24 eral cooperating institutions, meeting such require25 ment as prescribed by the Secretary.
16

•HR 1998 IH 

1 (5) REPORTS.—The Secretary may require the 

2 periodic preparation of reports on the activities of 

3 the centers and consortia and submission of such re4 ports to the Secretary. 

5 (c) ESTABLISHMENT OF QUALITY ENHANCEMENT

6 RESEARCH INITIATIVES FOR PARALYSIS.—

7 (1) IN GENERAL.—The Secretary may carry out 

8 initiatives for quality enhancement of research on 

9 paralysis to translate clinical findings and rec10 ommendations into practices within the Veterans 

11 Health Administration. The Secretary shall carry 

12 out those initiatives through the award of grants to 

13 Department of Veterans Affairs medical centers that 

14 are affiliated with medical schools or other partners 

15 the Secretary considers appropriate. Such grants 

16 may be used to pay all or part of the cost of plan17 ning, establishing, improving and providing basic op18 erating support for the initiatives. 

19 (2) ACTIVITIES.—Each medical center for 

20 which funds are provided under paragraph (1)—

21 (A) may identify high-risk/high volume dis22 eases or problems; 

23 (B) may formulate evidence-based clinical 

24 research; 
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•HR 1998 IH 

1 (C) may define existing practice patterns 

2 and outcomes across the Veterans Health Ad3 ministration and current variation from best 

4 practices; 

5 (D) may identify and implement interven6 tions (including performance criteria) to pro7 mote best practices; 

8 (E) may document that best practices im9 prove outcomes; 

10 (F) may document that improved patient 

11 outcomes are associated with improved health12 related quality of life; 

13 (G) may develop, test, and refine, and fa14 cilitate active distribution of, tools and products 

15 designed to promote clinical quality improve16 ments; 

17 (H) may plan and prepare to launch at 

18 least one project to implement and evaluate a 

19 quality enhancement intervention program for 

20 the translation of clinical research findings into 

21 routine clinical practice within the Administra22 tion; and 

23 (I) may compete for other Veterans Health 

24 Administration and non-Veterans Health Ad-
18

•HR 1998 IH 

1 ministration research projects to leverage core 

2 support. 

3 (d) MAINTENANCE OF EFFORT.—The Secretary may 

4 make an award under this section only if, with respect 

5 to activities for which the award is authorized to be ex6 pended, the applicant for the award agrees to maintain 

7 expenditures of non-Federal amounts for such activities 

8 at a level that is not less than the level of such expendi9 tures maintained by the applicant for the fiscal year pre10 ceding the first fiscal year for which the entity receives 

11 such an award. 

12 (e) PUBLIC INPUT.—The Secretary may under sub13 sections (a)(1) and (c)(1) provide for a mechanism—

14 (1) to educate the public on, and disseminate 

15 information to the public on, the existing and 

16 planned programs and research activities of the Vet17 erans Health Administration with respect to paral18 ysis; and 

19 (2) through which the Secretary can receive 

20 comments from the public regarding those programs 

21 and activities. 

22 (f) AUTHORIZATION OF APPROPRIATIONS.—For the 

23 purposes of carrying out this section, there are authorized 

24 to be appropriated such sums as may be necessary for 

25 each of fiscal years 2004 through 2007. Amounts appro-
19

•HR 1998 IH 

1 priated under this section are in addition to any other 

2 amounts appropriated for such purpose.

Æ
2

•HR 1998 IH 

1 SEC. 2. TABLE OF CONTENTS.

Sec. 1. Short title. 

Sec. 2. Table of contents. 

TITLE I—PARALYSIS RESEARCH 

Sec. 101. Expansion and coordination of activities of the National Institutes of 

Health with respect to research on paralysis. 

TITLE II—PARALYSIS REHABILITATION RESEARCH AND CARE 

Sec. 201. Expansion and coordination of 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 IV—ACTIVITIES OF THE DEPARTMENT OF VETERANS 

AFFAIRS 

Sec. 401. Expansion and coordination of activities of the Veterans Health Administration.

2 TITLE I—PARALYSIS RESEARCH 

3 SEC. 101. EXPANSION AND COORDINATION OF ACTIVITIES 

4 OF THE NATIONAL INSTITUTES OF HEALTH 

5 WITH RESPECT TO RESEARCH ON PARALYSIS. 

6 (a) IN GENERAL.—

7 (1) ENHANCED COORDINATION OF ACTIVI8 TIES.—The Director of the National Institutes of 

9 Health (in this section referred to as the ‘‘Director’’) 

10 may expand and coordinate the activities of such In11 stitutes with respect to research on paralysis. 

12 (2) ADMINISTRATION OF PROGRAM; COLLABO13 RATION AMONG AGENCIES.—The Director shall carry 

14 out this section acting through the Director of the 
3

•HR 1998 IH 

1 National Institute of Neurological Disorders and 

2 Stroke (in this section referred to as the ‘‘Institute’’) 

3 and in collaboration with any other agencies that the 

4 Director determines appropriate. 

5 (b) COORDINATION.—

6 (1) IN GENERAL.—The Director may develop 

7 mechanisms to coordinate the paralysis research and 

8 rehabilitation activities of the agencies of the Na9 tional Institutes of Health in order to further ad10 vance such activities and avoid duplication of activi11 ties. 

12 (2) REPORT.—Not later than December 1, 

13 2003, the Director shall prepare a report to Con14 gress that provides a description of the paralysis ac15 tivities of the Institute and strategies for future ac16 tivities. 

17 (c) CHRISTOPHER REEVE PARALYSIS RESEARCH

18 CONSORTIA.—

19 (1) IN GENERAL.—The Director may under 

20 subsection (a)(1) make awards of grants to public or 

21 nonprofit private entities to pay all or part of the 

22 cost of planning, establishing, improving, and pro23 viding basic operating support for consortia in paral24 ysis research. The Director shall designate each con-
4

•HR 1998 IH 

1 sortium funded under grants as a Christopher Reeve 

2 Paralysis Research Consortium. 

3 (2) RESEARCH.—Each consortium under para4 graph (1)—

5 (A) may conduct basic and clinical paral6 ysis research; 

7 (B) may focus on advancing treatments 

8 and developing therapies in paralysis research; 

9 (C) may focus on one or more forms of pa10 ralysis that result from central nervous system 

11 trauma or stroke; 

12 (D) may facilitate and enhance the dis13 semination of clinical and scientific findings; 

14 and 

15 (E ) may replicate the findings of consortia 

16 members for scientific and translational pur17 poses. 

18 (3) COORDINATION OF CONSORTIA; REPORTS.—

19 The Director may, as appropriate, provide for the 

20 coordination of information among consortia under 

21 paragraph (1) and ensure regular communication 

22 between members of the consortia, and may require 

23 the periodic preparation of reports on the activities 

24 of the consortia and the submission of the reports to 

25 the Director. 
5

•HR 1998 IH 

1 (4) ORGANIZATION OF CONSORTIA.—Each con2 sortium under paragraph (1) may use the facilities 

3 of a single lead institution, or be formed from sev4 eral cooperating institutions, meeting such require5 ments as may be prescribed by the Director. 

6 (d) PUBLIC INPUT.—The Director may under sub7 section (a)(1) provide for a mechanism to educate and dis8 seminate information on the existing and planned pro9 grams and research activities of the National Institutes 

10 of Health with respect to paralysis and through which the 

11 Director can receive comments from the public regarding 

12 such programs and activities. 

13 (e) AUTHORIZATION OF APPROPRIATIONS.—For the 

14 purpose of carrying out this section, there are authorized 

15 to be appropriated such sums as may be necessary for 

16 each of the fiscal years 2004 through 2007. Amounts ap17 propriated under this subsection are in addition to any 

18 other amounts appropriated for such purpose.
6

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1 TITLE II—PARALYSIS REHABILI2 TATION RESEARCH AND CARE 

3 SEC. 201. EXPANSION AND COORDINATION OF ACTIVITIES 

4 OF THE NATIONAL INSTITUTES OF HEALTH 

5 WITH RESPECT TO RESEARCH WITH IMPLICA6 TIONS FOR ENHANCING DAILY FUNCTION 

7 FOR PERSONS WITH PARALYSIS. 

8 (a) IN GENERAL.—

9 (1) EXPANSION OF ACTIVITIES.—The Director 

10 of the National Institutes of Health (in this section 

11 referred to as the ‘‘Director’’) may expand and co12 ordinate the activities of such Institutes with respect 

13 to research with implications for enhancing daily 

14 function for people with paralysis. 

15 (2) ADMINISTRATION OF PROGRAM; COLLABO16 RATION AMONG AGENCIES.—The Director shall carry 

17 out this section acting through the Director of the 

18 National Institute on Child Health and Human De19 velopment and the National Center for Medical Re20 habilitation Research and in collaboration with the 

21 National Institute on Neurological Disorders and 

22 Stroke, the Centers for Disease Control and Preven23 tion, and any other agencies that the Director deter24 mines appropriate. 

25 (b) PARALYSIS CLINICAL TRIALS NETWORKS.—
7

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

2 awards of grants to public or nonprofit private enti3 ties to pay all or part of the costs of planning, estab4 lishing, improving, and providing basic operating 

5 support to multicenter networks of clinical sites that 

6 will collaborate to design clinical rehabilitation inter7 vention protocols and measures of outcomes on one 

8 or more forms of paralysis that result from central 

9 nervous system trauma, disorders, or stroke, or any 

10 combination of such conditions. 

11 (2) RESEARCH.—Each multicenter clinical trial 

12 network may—

13 (A) focus on areas of key scientific con14 cern, including—

15 (i) improving functional mobility; 

16 (ii) promoting behavioral adaptation 

17 to functional losses, especially to prevent 

18 secondary complications; 

19 (iii) assessing the efficacy and out20 comes of medical rehabilitation therapies 

21 and practices and assistive technologies; 

22 (iv) developing improved assistive 

23 technology to improve function and inde24 pendence; and 
8

•HR 1998 IH 

1 (v) understanding whole body system 

2 responses to physical impairments, disabil3 ities, and societal and functional limita4 tions; and 

5 (B) replicate the findings of network mem6 bers for scientific and translation purposes. 

7 (3) COORDINATION OF CLINICAL TRIALS NET8 WORKS.—The Director may, as appropriate, provide 

9 for the coordination of information among networks 

10 and ensure regular communication between members 

11 of the networks and may require the periodic prepa12 ration of reports on the activities of the networks 

13 and submission of reports to the Director. 

14 (c) REPORT.—Not later than December 1, 2003, the 

15 Director shall submit to the Congress a report that pro16 vides a description of research activities with implications 

17 for enhancing daily function for persons with paralysis. 

18 (d) AUTHORIZATION OF APPROPRIATIONS.—For the 

19 purpose of carrying out this section, there are authorized 

20 to be appropriated such sums as may be necessary for 

21 each of the fiscal years 2004 through 2007. Amounts ap22 propriated under this subsection are in addition to any 

23 other amounts appropriated for such purpose. 
9

•HR 1998 IH 

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 Act referred to as the ‘‘Sec10 retary’’), acting through the Director of the Centers for 

11 Disease Control and Prevention, may study the unique 

12 health challenges associated with paralysis and other phys13 ical disabilities and carry out projects and interventions 

14 to improve the quality of life and long-term health status 

15 of persons with paralysis and other physical disabilities. 

16 The Secretary may carry out such projects directly and 

17 through awards of grants or contracts. 

18 (b) CERTAIN ACTIVITIES.—Activities under sub19 section (a) include—

20 (1) the development of a national paralysis and 

21 physical disability quality of life action plan, to pro22 mote health and wellness in order to enhance full 

23 participation, independent living, self-sufficiency and 

24 equality of opportunity in partnership with voluntary 

25 health agencies focused on paralysis and other phys-
10

•HR 1998 IH 

1 ical disabilities, to be carried out in coordination 

2 with the State-based Comprehensive Paralysis and 

3 Other Physical Disability Quality of Life Program of 

4 the Centers for Disease Control and Prevention; 

5 (2) support for programs to disseminate infor6 mation involving care and rehabilitation options and 

7 quality of life grant programs supportive of commu8 nity based programs and support systems for per9 sons with paralysis and other physical disabilities; 

10 (3) in collaboration with other centers and na11 tional voluntary health agencies, establish a hospital12 based paralysis registry and conduct relevant popu13 lation-based research; and 

14 (4) the development of comprehensive, unique 

15 and innovative programs, services, and demonstra16 tions within existing State-based disability and 

17 health programs of the Centers for Disease Control 

18 and Prevention which are designed to support and 

19 advance quality of life programs for persons living 

20 with paralysis and other physical disabilities focus21 ing on—

22 (A) caregiver education; 

23 (B) physical activity; 

24 (C) education and awareness programs for 

25 health care providers;
11

•HR 1998 IH 

1 (D) prevention of secondary complications; 

2 (E) home and community-based interven3 tions; 

4 (F) coordinating services and removing 

5 barriers that prevent full participation and inte6 gration into the community; and 

7 (G) recognizing the unique needs of under8 served populations. 

9 (c) GRANTS.—The Secretary may award grants in ac10 cordance with the following: 

11 (1) To State and local health and disability 

12 agencies for the purpose of—

13 (A) establishing paralysis registries for the 

14 support of relevant population-based research; 

15 (B) developing comprehensive paralysis 

16 and other physical disability action plans and 

17 activities focused on the items listed in sub18 section (b)(4); 

19 (C) assisting State-based programs in es20 tablishing and implementing partnerships and 

21 collaborations that maximize the input and sup22 port of people with paralysis and other physical 

23 disabilities and their constituent organizations; 
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1 (D) coordinating paralysis and physical 

2 disability activities with existing state-based dis3 ability and health programs; 

4 (E) providing education and training op5 portunities and programs for health profes6 sionals and allied caregivers; and 

7 (F) developing, testing, evaluating, and 

8 replicating effective intervention programs to 

9 maintain or improve health and quality of life. 

10 (2) To nonprofit private health and disability 

11 organizations for the purpose of—

12 (A) disseminating information to the pub13 lic; 

14 (B) improving access to services for per15 sons living with paralysis and other physical 

16 disabilities and their caregivers; 

17 (C) testing model intervention programs to 

18 improve health and quality of life; and 

19 (D) coordinating existing services with 

20 state-based disability and health programs. 

21 (d) COORDINATION OF ACTIVITIES.—The Secretary 

22 shall assure that activities under this section are coordi23 nated as appropriate with other agencies of the Public 

24 Health Service. 
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1 (e) REPORT TO CONGRESS.— Not later than Decem2 ber 1, 2003, the Secretary shall submit to the Congress 

3 a report describing the results of the evaluation under sub4 section (a), and as applicable, the strategies developed 

5 under such subsection. 

6 (f) AUTHORIZATION OF APPROPRIATIONS.—For the 

7 purpose of carrying out this section, there are authorized 

8 to be appropriated such sums as may be necessary for 

9 each of the fiscal years 2004 through 2007.

10 TITLE IV—ACTIVITIES OF THE 

11 DEPARTMENT OF VETERANS 

12 AFFAIRS 

13 SEC. 401. EXPANSION AND COORDINATION OF ACTIVITIES 

14 OF THE VETERANS HEALTH ADMINISTRA15 TION. 

16 (a) IN GENERAL.—

17 (1) ENHANCED COORDINATION OF ACTIVI18 TIES.—The Secretary of Veterans Affairs may ex19 pand and coordinate activities of the Veterans 

20 Health Administration of the Department of Vet21 erans Affairs with respect to research on paralysis. 

22 (2) ADMINISTRATION OF PROGRAM.—The Sec23 retary shall carry out this section through the Direc24 tor of the Office of Research and Development of 

25 the Veterans Health Administration and in collabo-
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1 ration with the National Institutes of Health and 

2 other agencies the Secretary determines appropriate. 

3 (b) ESTABLISHMENT OF PARALYSIS RESEARCH, 

4 EDUCATION, AND CLINICAL CARE CENTER.—

5 (1) IN GENERAL.—The Secretary may establish 

6 within the Department of Veterans Affairs centers 

7 for paralysis research, education and clinical activi8 ties. Such centers shall be established at Depart9 ment medical centers through the award of grants to 

10 Department medical centers that are affiliated with 

11 medical schools or other organizations the Secretary 

12 considers appropriate. Such grants may be used to 

13 pay all or part of the cost of planning, establishing, 

14 improving, and providing basic operating support for 

15 such centers. 

16 (2) RESEARCH.—Each center under paragraph 

17 (1)—

18 (A) may focus on basic biomedical research 

19 on paralysis; 

20 (B) may focus on rehabilitation research 

21 on paralysis; 

22 (C) may focus on health services and clin23 ical trials for paralysis that result from central 

24 nervous system trauma or stroke; 
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1 (D) may facilitate and enhance the dis2 semination of clinical and scientific findings; 

3 and 

4 (E) may replicate the findings of centers 

5 for scientific and translational purposes. 

6 (3) COORDINATION OF CENTERS INTO CON7 SORTIA.—The Secretary may, as appropriate, pro8 vide for the linkage and coordination of information 

9 among centers under paragraph (1) in order to cre10 ate national consortia of centers and ensure regular 

11 communications between members of the centers. 

12 Each such consortium—

13 (A) may conduct large-scale clinical trials 

14 for greater statistical significance; 

15 (B) may operate in an interdisciplinary re16 habilitation team; 

17 (C) may focus on determining current 

18 standards of care and best practices; and 

19 (D) may identify research gaps for specific 

20 populations and identify future research needs. 

21 (4) ORGANIZATION OF CONSORTIA.—Each con22 sortium under paragraph (3) may use the facilities 

23 of a single lead institution, or be formed from sev24 eral cooperating institutions, meeting such require25 ment as prescribed by the Secretary.
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1 (5) REPORTS.—The Secretary may require the 

2 periodic preparation of reports on the activities of 

3 the centers and consortia and submission of such re4 ports to the Secretary. 

5 (c) ESTABLISHMENT OF QUALITY ENHANCEMENT

6 RESEARCH INITIATIVES FOR PARALYSIS.—

7 (1) IN GENERAL.—The Secretary may carry out 

8 initiatives for quality enhancement of research on 

9 paralysis to translate clinical findings and rec10 ommendations into practices within the Veterans 

11 Health Administration. The Secretary shall carry 

12 out those initiatives through the award of grants to 

13 Department of Veterans Affairs medical centers that 

14 are affiliated with medical schools or other partners 

15 the Secretary considers appropriate. Such grants 

16 may be used to pay all or part of the cost of plan17 ning, establishing, improving and providing basic op18 erating support for the initiatives. 

19 (2) ACTIVITIES.—Each medical center for 

20 which funds are provided under paragraph (1)—

21 (A) may identify high-risk/high volume dis22 eases or problems; 

23 (B) may formulate evidence-based clinical 

24 research; 
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1 (C) may define existing practice patterns 

2 and outcomes across the Veterans Health Ad3 ministration and current variation from best 

4 practices; 

5 (D) may identify and implement interven6 tions (including performance criteria) to pro7 mote best practices; 

8 (E) may document that best practices im9 prove outcomes; 

10 (F) may document that improved patient 

11 outcomes are associated with improved health12 related quality of life; 

13 (G) may develop, test, and refine, and fa14 cilitate active distribution of, tools and products 

15 designed to promote clinical quality improve16 ments; 

17 (H) may plan and prepare to launch at 

18 least one project to implement and evaluate a 

19 quality enhancement intervention program for 

20 the translation of clinical research findings into 

21 routine clinical practice within the Administra22 tion; and 

23 (I) may compete for other Veterans Health 

24 Administration and non-Veterans Health Ad-
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1 ministration research projects to leverage core 

2 support. 

3 (d) MAINTENANCE OF EFFORT.—The Secretary may 

4 make an award under this section only if, with respect 

5 to activities for which the award is authorized to be ex6 pended, the applicant for the award agrees to maintain 

7 expenditures of non-Federal amounts for such activities 

8 at a level that is not less than the level of such expendi9 tures maintained by the applicant for the fiscal year pre10 ceding the first fiscal year for which the entity receives 

11 such an award. 

12 (e) PUBLIC INPUT.—The Secretary may under sub13 sections (a)(1) and (c)(1) provide for a mechanism—

14 (1) to educate the public on, and disseminate 

15 information to the public on, the existing and 

16 planned programs and research activities of the Vet17 erans Health Administration with respect to paral18 ysis; and 

19 (2) through which the Secretary can receive 

20 comments from the public regarding those programs 

21 and activities. 

22 (f) AUTHORIZATION OF APPROPRIATIONS.—For the 

23 purposes of carrying out this section, there are authorized 

24 to be appropriated such sums as may be necessary for 

25 each of fiscal years 2004 through 2007. Amounts appro-
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1 priated under this section are in addition to any other 

2 amounts appropriated for such purpose.

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