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 #1 "Locating Information About SCI" Level - Consumer

Published By: Medical RRTC in the Prevention & Treatment of Secondary Complications of Spinal Cord Injury Training Office, Room 506, UAB-Spain Rehabilitation Center 1717 6th Ave. S, Birmingham, AL 35233-7330 (205) 934-3283, FAX (205-975-5952), 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. Some charge a small fee for materials. Use them as a starting point to locate answers to questions you have about spinal cord injury.

I. Organizations

Center for Accessible Housing
North Carolina State University,
PO Box 8613,
Raleigh, NC 27695-8613 1-800-220-8770 or 1-919-515-3082

Collects, updates, publishes, and distributes resource information about construction and home modifications for accessibility. Provides information and technical assistance on universal design and accessible housing.

Disability & Business Technical Assistance Centers 1-800-949-4232
Centers respond to calls for information, technical assistance, and referrals for ADA-related assistance. There are ten regional centers across the country that provide training and outreach activities.

Easy Access Hotline (8:30 am - 5:30 pm PST) 1-800-875-4663

Helps consumers with concerns about accessible housing. Sponsored by Century 21 Real Estate Corp and the National Easter Seal Society. Callers can receive an "Easy Access Resource List" and a brochure called "Easy Access Housing".

FES Information Center 1000 Cedar Ave, Cleveland, Ohio 44106 1-800-666-2353 or 1-216-231-3257

Provides a literature service (brochures, information packets, and bibliographies) and referral service on FES (Functional Electrical Stimulation) technology. Also have some videotapes for rent.

Job Accommodation Network (JAN)
West Virginia University,
918 Chestnut Ridge Rd, Ste 1,
PO Box 6080,
Morgantown, WV 26506-6080
1-800-526-7234

Provides employers with information on accommodation of workers with disabilities, including accommodation methods, devices, and strategies for solving job accommodation problems.

National Council on Independent Living (NCIL)
2111 Wilson Blvd., #406,
Arlington, VA 22201
1-703-525-3406

NCIL coordinates national support efforts to the independent living centers by providing technical assistance, public education, and other services. To locate the independent living center nearest to you, look in the telephone directory under Independent Living Center or call NARIC (National Rehabilitation Information Center).

National Organization on Disability
910 16th St. NW,
Washington, DC 20006
1-800-248-2253
Provides information on disabilities, such as fact sheets and publications. Uses a Voice Mail system.

National Spinal Cord Injury Hotline
2201 Argonne Dr,
Baltimore, MD 21218
A 24 hour information and referral service to the SCI community. The hotline provides information, support, and resources by referring callers to appropriate agencies in their local area.

National Rehabilitation Information Center (NARIC)
8455 Colesville Rd., Suite 935,
Silver Spring, MD 20910-3319
1-800-346-2742
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 can make referrals to ILC's in the caller's area. They also maintain ABLEDATA and REHABDATA databases. [See ABLE INFORM under Computer Resources]
Publications: NARIC Quarterly (free); Americans with Disabilities Act Resource Guide, 1993; Spinal Cord Injury: A NARIC Resource Guide for People with Spinal Cord Injury and Their Families, 1990.

National Spinal Cord Injury Association (NSCIA)
545 Concord Ave, Ste. 29,
Cambridge, MA 02138
1-617-441-8500
The NSCIA, a membership-based, non-profit organization, disseminates information on improving methods of clinical care; promotes basic neuroscience research toward regenerating spinal cord tissue, and promotes independence. It has local/state chapters that provide support groups and resources to individuals with SCI, their families, and health care professionals.
Publication: Spinal Cord Injury Life (quarterly magazine)

NSCIA HOTLINE 1-800-962-9629 (11:30-5:30 EST)
The Resource Center at the NSCIA sponsors a Hotline that provides free general reference service and offers one-to-one problem solving and information related to SCI. Publications: Fact Sheets; "Rebecca Finds a New Way" (Book for children ages 5-9 with SCI)

Paralyzed Veterans of America (PVA)
801 18th St. NW,
Washington, DC 20006
1-800-424-8200 or 1-202-872-1300
A veterans service organization whose primary goal is to maximize the quality of life for people with spinal cord injury or spinal disease through research, education, advocacy, and recreation programs.
Publications: Paraplegia News; Sports 'n Spokes (magazines) Available from - PVA Publications, 2111 Highland Ave. Suite 180-B, Phoenix, AZ 85016-9611. Yes, You Can! A Guide to self-care for persons with Spinal Cord Injury (book)
Available from - PVA Education Department, 801 Eighteenth St. NW, Washington, DC 20006

Spinal Network
23815 Stuart Ranch Rd,
Malibu, CA 90265-8987
1-800-338-5412 (Ext 219) or 1-310-317-4522
Publisher of magazine and books on disability issues, especially spinal cord injury.
Publications: New Mobility (magazine) Spinal Network, 2nd Ed. (book)

Wheelchair Sports, USA
3595 E. Fountain Blvd., Suite L-1,
Colorado Springs, CO 80910
1-719-574-1150
Wheelchair Sports, USA, formerly the national Wheelchair Athletic Association, organizes athletes who use wheelchairs (Summer sporting activities only) on local, regional, national, and international levels.

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 BBSs in the area of disabilities.

***NOTE*** Some of the BBSs do have a subscription cost. If dialing a long distance number you will be charged for the long distance phone call.

ADAnet BBS# 1-205-254-6050 21212 8th Ave N, Suite 1623, Birmingham, AL 35126 1-205-323-3030

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. This international network encourages individuals with disabilities to enter into a community dialogue of issues important to them. The ADAnet Network relays to other regional networks and hubs.

ABLE INFORM BBS# 1-301-589-3563 NARIC 8455 Colesville Rd., Suite 935 Silver Spring, MD 20910-3319 1-800-277-0216

Now available 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.

ENABLE BBS# 1-304-759-0727

West Virginia Research and Training Center, 5088 Washington St. W., Cross Lanes, WV 25313 1-304-759-0716

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.

The Handicap News BBS BBS# 1-203-337-1607

This Bulletin Board Service maintains a list called "The Handicap BBS List" which is a listing of computer bulletin boards that carry conferences for individuals with disabilities. The list is arranged by area code so you can locate local networks. The current version of the list "HCAPBBS.LIST" can be downloaded.

JOB ACCOMMODATION NETWORK (JAN) Bulletin Board Service BBS# 1-800-342-5526 West Virginia University, 918 Chestnut Ridge Rd, Ste 1, PO Box 6080, Morgantown, WV 26056-6080 1-800-526-7234

A service that provides information about job accommodation and the employability of people with functional limitations. The Job Accommodation Network Discussion Group provides access to the JAN Consultants plus the expertise of many other callers to the BBS. Topics are limited to issues dealing with job accommodation.


III. Local Agencies

Each area has local or regional services that may be able to assist you with needs that occur as a result of a spinal cord injury. The Social Worker at your rehabilitation center can usually give you the names of the agencies in your area. Listed below are three such organizations that are found in most areas.


Independent Living Center

Birmingham Independent Living Center 1-205-251-2223 206 13th St. S, Birmingham, AL 35233-1317

Independent Living Centers (ILCs) serve individuals with disabilities, believing that they have the right and responsibility to make choices about their own lives. ILC staff work to help the individual achieve independence and become active in their community.

Some services an ILC may provide to individuals with SCI include: independent living skills, peer support, and advocacy. Trained specialists are available to acquaint individuals with SCI and their families with available services and options in the surrounding community. ILC staff help individuals determine needs and make referrals concerning issues such as accessible housing and personal care assistance. To locate the Independent Living Center in your area contact:

The National Rehabilitation Information Center (NARIC) 1-800-346-2742 or

Independent Living Research Unit (ILRU) 2323 S. Shepherd, Suite 1000, Houston, TX 77019 1-713-520-0230


State Vocational Rehabilitation Services

The number one priority is to help an individual with a disability find gainful employment. Their goal is to ensure that the individual is prepared and trained to work in the best job for his skills and abilities. Services provided vary but may include: evaluation and assessment, counseling, skills or job training, purchase of assistive devices, and job placement and follow-up.

Most states have vocational rehabilitation services for individuals who qualify. The name of the agency varies in different states, such as the Department or Division of Vocational Rehabilitation, Rehabilitation Services, or Vocational Rehabilitation. In Alabama it is called Adult Vocational Rehabilitation Service.

To locate the office in your area, look in the Blue Pages of your telephone directory under State Government or in the White Pages under Government Agencies.


Client Assistance Program (CAP)

This is a client advocacy program managed by the local Protection and Advocacy Agency. (In Alabama the Division of Rehabilitation Services oversees the CAP). CAP's goal is to help individuals who have questions about rehabilitation services or who are having problems with their rehabilitation programs that are funded by federal grants. The CAP assists individuals in understanding their eligibility status, explains services available, and helps develop solutions to problems individuals may have with rehabilitation services. Contact the Protection Advocacy Agency office in your area for the CAP office nearest you.

In the State of Alabama contact:

Client Assistance Program 1-800-228-3231
PO Box 11586, Montgomery, AL 36111-0586
or
ADAP (Alabama Disabilities Advocacy Program) 1-800-826-1675 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.