CODI: Cornucopia of Disability Information

Locating Information About SCI

The following is an Information Sheet developed by the Training
office of The RRTC in Secondary Complications of Spinal Cord Injury
at UAB Spain Rehabilitation Center.  It contains listings of
organizations that provide information and resources on spinal cord
injury.  For permission to reprint for further distribution,
contact Linda Lindsey:  via Internet - Lindsey@Sun.rehabm.uab.edu
or write to RRTC Training Office, address and phone listed below.

		  Spinal Cord Injury - InfoSheet #2
     "Locating Information About SCI"        Level - Professional

Published by:
Medical RRTC in the Prevention and Treatment of Secondary
Complications of SCI
Training Office, Room 506, UAB-Spain Rehabilitation Center,
1717 6th Ave. S, Birmingham, AL 35233-7330 
(205) 934-3283 or (205) 934-4642 (TTD only)

Date:  August, 1994

There are many  sources that provide information about spinal cord
injury.  This information sheet includes research and information
centers, agencies, and organizations that provide various types of
facts and materials suited for professionals who work with
individuals with spinal cord injury.  A companion InfoSheet on the
Consumer Level includes additional resources suited for both the
consumer and the professional.   Use these as a starting point to
locate information or answer questions that you have about spinal
cord injury.

I.  Organizations

American Association of Spinal Cord Injury Nurses      
75-20 Astoria Blvd., Jackson Heights, NY  11370-1178
718-803-3782
     Promotes education in clinical practice and nursing research
in areas of nursing care to individuals with SCI.  Produce
education materials for spinal cord injury nurses.
Publications:  SCI Nursing (quarterly); Education Guide for Spinal
Cord Injury Nurses: A Manual for Teaching Patients, Families and
Caregivers (1990)

American Assn of Spinal Cord Injury Psychologists & Social Workers
75-20 Astoria Blvd., Jackson Heights, NY  11370-1178
718-803-3782
     Promotes research to improve quality of care and works to
improve skills and techniques of members.
Publications:  SCI Psychosocial Process (quarterly)

American Paralysis Association (APA)
500 Morris Ave., Springfield, NJ  07081
1-800-225-0292  or  201-379-2690
     The American Paralysis Association is a national non-profit
organization dedicated to finding a cure for paralysis, resulting
from spinal cord injury, head injury and stroke.  Supports research
to find a cure for paralysis.

American Paraplegia Society (APS)
75-20 Astoria Blvd., Jackson Heights, NY  11370-1178   718-803-3782
     An organization for physicians dedicated to improving the
quality of medical care for persons with SCI.
Publications:  Journal of American Paraplegia Society

American Spinal Injury Association (ASIA)
250 East Superior St., Room 1436, Chicago, IL  60611   
312-908-3425
     Professional organization, primarily for physicians, that
publishes uniform standards for accessing and classifying spinal
cord injury.  Has compiled a database of audiovisual and published
materials on various topics associated with SCI.  (SEE ASIA
Database)  
Publications:  ASIA Bulletin;  ASIA Meeting Proceedings

Association for Rehabilitation Nurses
5700 Orchard Rd, 1st Floor, Skokie, IL  60077-1057    
708-966-3433
Sponsors annual conferences, regional activities and continuing
education courses.  
Publications:  Rehabilitation Nursing Journal  and  newsletters

Miami Project to Cure Paralysis
1600 NW 10th Ave. R-48, Miami, FL  33136  
1-800-782-6387
     Research center dedicated to finding effective
treatments, such as FES, and ultimately a cure for paralysis
resulting from spinal cord injury and FES.  Does not provide
evaluation, care or treatment for individuals with SCI.
Publication: The Project

National Institute on Disability Research and Rehabilitation
(NIDRR)
US Dept Education, 400 Maryland Ave SW, Rm 3060,
Washington, DC 20202-2646     202-205-9184
     Supports the Model Regional Spinal Cord Injury Care Systems
and related research efforts.  It administers grants programs,
including Rehabilitation Research and Training Centers.  A list of
Model Regional SCI Care System Centers and RRTC's is available from
NARIC (SEE Additional  Resources) and ABLE INFORM (SEE  Computer
Resources).

National Rehabilitation Association (NRA)
633 S. Washington St., Alexandria, VA  22314-4193
703-836-0850
     The National Rehabilitation Association (NRA) is open to all
individuals interested in the advocacy of programs and services for
individuals with disabilities.  Includes professionals employed in
the fields of rehabilitation and allied areas, vendors and other
providers of services.  There are nine divisions, each publishing
newsletters for their membership.  
Publication:  Journal of Rehabilitation                           
                                                 
National Rehabilitation Counselor Association (NRCA)
633 S. Washington St., Alexandria, VA  22314
703-836-0850
     A division of the NRA for rehabilitation counselors, NRCA
strives to meet the professional interests and needs of all
rehabilitation counselors.
Publication:  Journal of Applied Rehabilitation Counseling

National Spinal Cord Injury Statistical Center
UAB-Spain Rehabilitation Center, Rm. 544,
1717 6th Ave. S., Birmingham, AL  35233-7330       205-934-3302
     Supervises and directs the collection, management and analysis
of data from the Model Regional SCI Care Systems resulting in the
world's largest SCI database. 
Publication:  fact sheets 

Paralyzed Veterans of America (PVA)
801 18th St. NW, Washington, DC  20006
1-800-424-8200
     The organization's primary goal is to maximize the quality of
life for individuals with SCI or disease through research,
education, advocacy, and recreation programs.  The PVA's Spinal
Cord Injury Education and Training Foundation (ETF) funds projects
targeting education and training activities.  ETF is committed to
patient/client education.  
Publication:  Yes, You Can!  A Guide for Self-Care for Persons with
Spinal Cord Injury  

RESNA (Rehabilitation Engineering Society of North America)
1700 North Moore St, Suite 1540, Arlington, VA  22209-1903  
703-524-6686
     Promote and exchange ideas and information for the advancement
of assistive technology.
Publications:  Assistive Technology (quarterly), RESNA News
(bimonthly)

The Spinal Cord Society
Rt. 5, Wendell Rd., Fergus Falls, MN  56537  
218-739-5252
     An international organization whose goal is the cure of spinal
cord paralysis through improved treatment and research.  They
pioneered regeneration and reactivation research, and electrical
and molecular surgery treatments.
Publications: Spinal Cord Society NewsletterComputer Resources

II.  Computer Resources

If you have access to a computer with a modem, there are bulletin
board services (BBSs) that you can use to find information as well
as communicate with other BBS users.  Below are listed several
BBS's in the area of disabilities.    Additional  computer bulletin
boards that carry conferences and programs for those with
disabilities are listed on the Introductory InfoSheet.
***NOTE***  Some the BBS's do have a subscription cost.  If dialing
a long distance number, you will be charged for the long distance
phone call.

ADAnet    BBS# 205-254-6050
2121-8th Ave N, Ste. 1623, Birmingham,  AL  35203
205-323-3030
     ADAnet is the Association of Disabled Americans electronic
bulletin board service which is supported by the Disability Law
Foundation.  It contains over 100 conferences on topics such as
Spinal Injury; Chronic Pain; Caregivers; and Adaptive Technology. 


ABLE INFORM        BBS# 301-589-3563
NARIC, 8455 Colesville Rd., Suite 935, Silver Spring, MD 
20910-3319
1-800-227-0216    
     Can also be accessed via TELNET (Fedworld.gov and then dd115
from the FedWorld Top menu.)Users can read or download bulletins
and files and search databases, including REHABDATA (lists over
40,000 documents related to disability research and knowledge),
ABLEDATA (provides information pertaining to 18,000 assistive
devices), the NARIC KnowledgeBase, and the NIDRR Program Directory. 

Dimenet   BBS# 508-880-5412
Disabled Individuals Movement for Equality Network
c/o Eric Griffin or Roland Sykes
Independence Associates, 9 Taunton Green, Taunton, MA  02780
508-880-5323
     A national computer network responsive to the needs of the
independent living and disability rights movements.  Features of
the system include Bulletins, News Groups, electronic mail, and
transfer of files.

ENABLE    BBS# 304-759-0727
West Virginia Research & Training Center, 5088 Washington St. W.,
Cross Lanes, WV 25313    304-759-0716
     Project ENABLE uses computer telecommunications to distribute
disability related information that can assist with decision making
in all aspects of one's life.  ENABLE serves individuals with
disabilities, their families, support groups, rehabilitation
workers, educators, and others who may be concerned with disability
issues.

NCHRTM Bulletin Board    BBS# 405-624-3156
National Clearing House of Rehabilitation Training Materials
816 W 6th St, Oklahoma State Univ, Stillwater, OK  74074-0435    
1-800-223-5219
     Provides information sources contained in the NCHRTM Catalog,
access to ABLEDATA, ability to download information, documents and
shareware, as well as a message and conference area.

III.  Additional Resources

ASIA SCI Educational Materials Database
Div of Education, The Institute for Rehabilitation and
Research 
713-797-5945
1333 Moursund, Houston, TX  77030
713-797-5954
     A database developed for the American Spinal Injury
Association (ASIA), with support from the Paralyzed Veterans of
America (PVA).  It contains approximately 500 specialized
educational materials relating to spinal cord injury, including
both audiovisual and written materials.
     To request a search, call or write, and specify the subject
area you want investigated.  A printed report will be mailed
directly to you.  All requests, up to two subject areas, are FREE
OF CHARGE.  A printed copy of the holdings in the database is
available. 
Audiovisuals only: $30;
Written resources:  $30;  Both: $50.

Model Spinal Cord Injury System
     NIDRR currently funds 13 Model Spinal Cord Injury Centers to
participate in standardized national studies on spinal cord injury
and research.    Information and data is collected from theses
studies in a National Spinal Cord Injury Database.  Each Center's
research projects and publication vary.  Contact individual centers
for listing of projects, publications, and training programs. The
staff at these Centers concentrate on SCI care and emphasis is
placed on long-term adjustment to SCI.   For a listing of the
current Model Spinal Cord Injury Systems of Care contact NIDRR.   

National Rehabilitation Information Center (NARIC)     
8455 Colesville Rd., Suite 935, Silver Spring, MD  20910-3391     
1-800-346-2742  or  1-800-227-0216
     NARIC is a library and information center on disability and
rehabilitation funded by the National Institute on Disability and
Rehabilitation Research (NIDRR), Department of Education.  They
provide brochures, resource guides and fact sheets for a small fee.
     They collect and distribute results of federally funded
research projects and maintain a listing of over 400 ILC's in the
US.  They also maintain ABLEDATA and REHABDATA database (See ABLE
INFORM under Computer Resources)
Publications:   NARIC Quarterly  (free); Spinal Cord Injury: A
NARIC Resource Guide for People with Spinal Cord Injury and Their
Families, 1990

Rehabilitation Research and Training Centers
     Currently four Rehabilitation Research and Training Centers
are annually funded by the National Institute on Disability and
Rehabilitation Research to conduct basic and applied rehabilitation
research in areas of secondary complications, aging, and community
reintegration.  The RRTCs provide training and produce
informational materials as a means of disseminating the research
results to rehabilitation service providers and consumers.  The
topics of research, training, and publications vary with each
Center.  For a listing of the current RRTC's in Spinal Cord Injury
contact ABLE INFORM or NIDRR.

Developed by:
Linda Lindsey, MEd
c 1994  Board of Trustees of the University of Alabama
The University of Alabama at Birmingham provides equal opportunity
in education and employment.
This publication is supported in part by a grant (#H133B80012) from
the National Institute on Disability and Rehabilitation Research,
Dept of Education, Washington, D.C. 20202.  Opinions expressed in
this document are not necessarily those of the granting agency.