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Support Groups

1. How to Start a Support Group

1.1. Fact Sheet - How to Start Support or Discussion Group

Support groups provide a valuable service not only for counseling and support, but also for socializing and information sharing.   USA has developed guidelines to help you start a support group.  For more see below or the attached file.

USA Factsheet

How to Start Support or Discussion Group

We frequently receive calls for information on local support groups. Although there are thousands of people with all over the US, there are not always support groups for those that want them. Support groups provide a valuable service not only for counseling and support, but also for socializing and information sharing.

"Old timers" have information to share with newer injuries, and groups have more influence with vendors or medical professionals to present information and products. If there is not a support group in the area, people frequently ask how they can start one in their area. The process of beginning a support group can initially seem daunting, however, it is easier if we break it into little pieces -- what I call the five P's:

Step One - People

After you have decided that you want to start a support group, identify two or three persons who share your interest in starting (not simply joining) a support group. Although it is possible to run a support group by yourself, you it is easier and you reduce the chance of burn-out if you have other people assisting you. If one of the people assisting you has a computer, that is an additional benefit, as they may be willing to maintain the mailing list, make flyers and print minutes and notices.

You also need to have an idea of how many people want a support group. Is there a group who have expressed an interest in meeting for support? Is there a concentration of people with SCI in one area? A feel for the demographics will affect not only who you have in the group, but where you meet and even what will be the group's emphasis.

Who can Attend You have to decide who can attend the meetings. Do you want the group to be only for people with SCI and spinal dysfunction, or can individuals with other disabilities attend. Another very important decision is whether you want the meeting to be only for people with disabilities, or also for family members and friends. Many times, people with disabilities will want a place where they can talk about their own issues without family around.

Of course, family members have their own issues and they may want to speak about them without the person with a disability around. Possible solutions are to have 2 separate meetings, one for individuals with SCI, and one for family members. Another solution is to open the meeting to family members every 3 months. Of course, another option is not to include family members at all in the beginning phases of the support group.

Step Two - Planning

You will need to decide quite a number of things before the first meeting of your group, such as the frequency, location and emphasis of the group.

Decide how often your group will meet (USA support groups must meet at least once a month.) If your group meets less often than once a month, it runs the risk of losing momentum and focus; interest may die out in the long weeks before the next meeting. Some groups may have the interest to meet more than once a month. If so, feel free to go with the interest, but don't feel that every two weeks is the norm. Many starting groups only meet once a month and are quite successful.

Decide how you will get the word out. Most people will have a list of people who would be interested in a SCI support or discussion group. A local rehab hospital may be willing to make a mailing to former SCI patients for you to advertise the meeting, but don't expect them to turn their list over to you. Many times a local hospital may also assist with mail and photocopying costs.

Other places to advertise and solicit names are your local Independent Living Center (ILC), and with medical supply retailers. Don't overlook Vocational Rehabilitation. Remember, VR counselors are always seeing people with various disabilities, and are usually looking for ways to educate and train their clients. Don't forget to advertise in the local newspaper; most papers have a free section to advertise meeting notices.

What Kind of Group? There are many kind of support groups. Each has its own style, and each speaks to people in a different ways. You and the other people who are interested in starting a Support Group probably already have the type of support group you want in mind. Major types of support groups are as follows:

Peer Support groups. Groups led by others with similar disabilities. Usually these groups are not led by a professional like a social worker or rehab psychologist or counselor. A reasonable compromise might be a psychologist or counselor with a disability.

A professionally led support group. These groups are led or advised by a professional like a rehab psychologist, social worker or rehab counselor.

A discussion group. Not necessarily a support group, but a group with an educational emphasis to them. These groups may have a video or a speaker or topic each meeting. These groups may also provide a time where individuals can discuss issues of interest and concern to them to see if others have suggestions or have experienced a similar situation.

Step Three - Place

Decide on a central location. In many areas transportation is a major problem. A rehab hospital can provide a good location, as many people already know where it is, and you will have access to large meeting rooms as well as professionals interested in SCI. Some people may not feel comfortable meeting in a medical facility for personal reasons, so polling a few people about the location is wise.

A private residence with a large room, or a clubhouse makes a good alternative, as are church halls, Independent Living Centers, etc. The location should, of course be accessible, with plenty of parking and accessible via wheelchair accessible transportation if possible. Don't forget to make sure the bathrooms are accessible.

Some people may be tempted to have a rotating meeting place to make the meeting more accessible to people with transportation problems. This has benefits and potential problems. A benefit is that some people will have at least a few meetings in their area. This can increase the total number of people attending throughout the year.

A potential problem is that the group becomes fragmented because only certain people attend certain meetings. Also, unless the meeting locations are well publicized in advance, people may forget where the meeting is and decide not to attend. With the same location, people always know where to go.

Step four - Publicity

Publicity is crucial to a beginning support group. It is important to leverage all available media (especially free outlets). For example: Newspapers usually have a place to announce support meeting and clubs; Radio stations do PSA (public service announcements). Make a special effort to try for stations that serve the population you want (usually young males) TV and cable. Ditto on the PSAs, but also contact your local community access cable channel.

Many cable channels have a scrolling marquee that announces meetings in the area. You may also be able to get air time on your local channel, since many of them are in need of programming.

Make up a flier announcing the meeting. You're not writing the great american nover here, so just give people the basics - date, location, time, and a brief description of the purpose of the group. Remember, if you're putting the flyer up in a public place you may have only 2-3 seconds to get a passerby's attention, so use large type and few words. Distribute the flyer to all the people on the mailing list.

Try to make a personal visit to organizations like ILCs and hospitals so that you post the flyer yourself. If not, then print "Please Post" somewhere on the flyer. Again, ask Rehab Hospitals, ILCs, and other organizations and businesses to do a mailing for you.

Step five - Programming

So what will you do in your meetings? If your meeting is strictly a support group meeting, you will want to go around and check in with everyone and then begin the meeting using whatever model you choose. If your meetings will have an educational component to them, then planning the meetings will require additional effort.

Topics for meetings include sports and recreation (vendors are a good source of information on the latest equipment), jobs and housing (ask a local ILC and/or your Voc. Rehab. department for a speaker), ADA training, etc. Your local rehab hospital is also an excellent resource for medical information, if members express a desire for that. Ask participants what they would like to hear about.

The attendees are an excellent resource for information, each of us has special skills and insights on certain topics that others may be interested in. There are also books, videos and movies dealing with disability, as well as mainstream materials that discuss or portray disabilities that can make good topics or jumping off points for discussion on disability. Fanlight Productions is an excellent (though pricey) source for specialty videos on disability.

You can reach Fanlight at (800) 937-4113. Another activity that most people enjoy and which can generate enthusiasm in a group is to begin a peer visitation program or perform preventation and education programs at schools. We will cover these issues in a later issue.

Plan a time for people to just hangout either before or after the meeting, and make sure that people don't leave without signing up with their address and telephone number. Not only does this keep your mailing list up to date, but it also allows your support group to grow.

Running a meeting is learned skill, so don't feel discouraged if you're not perfect at it. It helps to have someone available who has done this before, so ask around.

This is not a comprehensive list of what to do, and running a support group is not easy, but it is a very rewarding and important service to the community. If you want additional information, feel free to call USA. If your support wants additional information on becoming a part of the USA Support Group Network, call and ask for the Support Group info packet.

This Factsheet is offered as an information service and is not intended to cover all treatments or research in the field, nor is it an endorsement of the methods mentioned herein. The National Spinal Cord Injury Resource Center (NSCIRC) provides information and referral on many subjects related to spinal cord injury. Contact the resource center at 1-800-962-9629.

Published: 2007-07-29

2. SCI Information Sheets

2.1. Consumer Info Sheet

AGRABILITY PROJECT
800-825-4264 or 765-494-5088
email: bng@ecn.purdue.edu
www.agrability.org
Purdue University, 1146 ABE Building West Lafayette, IN 47907-1146
An international source for information and resources on rehab technology for persons with disabilities working in agriculture.

AMERICAN ASSOC OF PEOPLE WITH DISABILITIES
800-840-8844 or 202-457-0046
email: aapd@aol.com
www.aapd.com
1629 K Street NW, Suite 503, Washington, DC 20006
Provides economic clout and power in numbers, unity, leadership and impact in the disability rights movement.

CENTER FOR ASSISTIVE TECHNOLOGY AND ENVIRONMENTAL ACCESS
404-894-4960
email: catea@coa.gatech.edu
www.sedbtac.org
490 10th Street, Atlanta, GA 30318
Provides ADA information, technical assistance and training to businesses and people with disabilities. They also provide referrals to the other ten regional centers around the country.

CENTER FOR RESEARCH ON WOMEN WITH DISABILITIES
800-443-7693 or 713-798-5782
email: crowd@bcm.tmc.edu
www.bcm.edu/crowd
Baylor College of Medicine, Dept of PM&R One Baylor Plaza, Houston, TX 77030
Focuses on issues related to health, aging, civil rights, abuse and independent living of women with disabilities. Develop and disseminate information to expand the life choices of women with disabilities.

CENTER FOR UNIVERSAL DESIGN
800-647-6777 or 919-515-3082
email: cud@ncsu.edu
www.design.ncsu.edu/cud
College of Design, North Carolina State University Campus Box 8613, Raleigh, NC 27695-8613
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.

CHRISTOPHER & DANA REEVE PARALYSIS RESOURCE CENTER
800-539-7309
email: info@paralysis.org
www.paralysis.org
Provides a comprehensive, national source of information for people living with paralysis. You may email questions or call the toll-free number to speak with an Information Specialist.

DISABLED SPORTS USA
301-217-0960
email: information@dsusa.org
www.dsusa.org
451 Hungerford Dr, Suite 100, Rockville, MD 20850
Provides children & adults with disabilities access to sports, recreation, and physical education programs. They sponsor "learn to" programs in a variety sports; competitive programs for serious athletes; family services; training and certification of professionals; and educational videotapes and manuals.

FES INFORMATION CENTER
216-231-3257
email: info@fesc.org
http://fescenter.cwru.edu/
11000 Cedar Ave, Cleveland, OH 44106-3052
Provides a literature (brochures, information packets, and bibliographies) and referral service on FES (Functional Electrical Stimulation) technology.

JOB ACCOMMODATION NETWORK (JAN)
800-526-7234 (or 800-232-9675 for ADA Info)
email: jan@jan.wvu.edu
www.jan.wvu.edu
PO Box 6080, Morgantown, WV 26506-6080
Provides methods, devices, and strategies for solving job accommodation problems for workers with disabilities.

MIAMI PROJECT TO CURE PARALYSIS
800-782-6387 or 305-243-7147
www.miamiproject.miami.edu
PO Box 016960 (R-48), Miami, FL 33101
A comprehensive research center dedicated to finding more effective treatments and ultimately a cure for paralysis.

NAT COUNCIL ON INDEPENDENT LIVING (NCIL)
703-525-3406 or 703-525-4153 (TTY)
email: ncil@ncil.org
www.ncil.org
1916 Wilson Blvd, Suite 209, Arlington, VA 22201
Coordinates efforts of Independent Living Centers, that advocate for rights of people with disabilities.

NAT FAMILY CAREGIVERS ASSOCIATION (NFCA)
800-896-3650
email: info@thefamilycaregiver.org
www.nfcacares.org
10400 Connecticut Ave, Ste 500, Kensington, MD 20895
Works to improve the quality of life of family caregivers. Provides information, education, support, public awareness and advocacy.

NAT REHABILITATION INFORMATION CTR (NARIC)
800-346-2742 or 301-459-5900
email: naricinfo@heitechservices.com
www.naric.com
4200 Forbes Boulevard, Suite 202, Lanham, MD 20706
A library and information center on disability providing brochures, resources guides, fact sheets and collecting and distributing results of federally funded research projects.

NATIONAL SPINAL CORD INJURY ASSOC (NSCIA)
800-962-9629 or 301-214-4006
email: info@spinalcord.org
www.spinalcord.org
6701 Democracy Blvd, Ste 300-9, Bethesda, MD 20817
Works to develop programs and serve as advocates for people with SCI, families and health care providers.

PARALYZED VETERANS OF AMERICA (PVA)
800-424-8200
email: info@pva.org
www.pva.org
801 18th Street NW, Washington, DC 20006
A veterans service organization devoted to maximizing the quality of life for people with spinal cord injury or spinal disease through research, education, advocacy, and recreation programs. (see Paraplegia News)

SPINALCORD INJURY INFORMATION NETWORK
205-934-3283
email: sciweb@uab.edu
www.spinalcord.uab.edu
619 19th Street S., SRC-529, Birmingham, AL 35249
Website with SCI materials and links to resources for people with disabilities. Managed by the University of Alabama at Birmingham Model Spinal Cord Injury System.

SPINALCORD INJURY NETWORK INTERNATIONAL
800-548-2673 or 707-577-8796
email: spinal@sonic.net
www.spinalcordinjury.org
3911 Princeton Dr, Santa Rosa, CA 95405-7013
Provides an information and referral service for persons with SCI. They loan SCI related videotapes through the mail to individuals with spinal cord injury and their families.

THROUGH THE LOOKING GLASS (TLG)
800-644-2666 or 510-848-1112
email: tlg@lookingglass.org
www.lookingglass.org
2198 Sixth St, Suite 100, Berkeley, CA 94710
A research and training center that offers clinical and supportive services, training, and research to families in which one or more members has a disability or medical issue.

UNITED SPINAL ASSOCIATION
800-962-9629
www.unitedspinal.org
120-34 Queens Boulevard, Kew Gardens, NY 11415
An organization dedicated to enhancing the lives of individuals with spinal cord injury or disease.  United Spinal is the largest non-profit organization dedicated to helping people living with SCI/D and is committed to providing active-lifestyle information, peer support and advocacy that empower individuals to achieve their highest potential in all facets of life.

WHEELCHAIR SPORTS, USA
515-574-1150
email: wsusa@aol.com
www.wsusa.org
1668 320th Way, Earlham, IA 50072
Developes wheelchair sporting opportunities. Sporting events for adults and youth include Paralympics, archery, shooting, swimming, table tennis and more.
Magazines & Newsletters

Inter@ct
408-793-6433
www.tbi-sci.org/interact.html
This bi-annual newsletter of the Santa Clara Valley Medical Center's Rehabilitation Research Center on TBI/SCI reports news in both SCI and TBI from this Center. Also available via email.

New Mobility Magazine
215-675-9133
www.newmobility.com
Subscription: $27.95 (US) 1 year
PO Box 220, Horsham, PA 19044
Publisher of magazine and books on disability issues, especially spinal cord injury.

Paraplegia News
888-888-2201
Email: info@pnnews.com
www.pvamagazines.com/pnnews
Subscription: $23 (US) 1year
2111 E. Highland Ave, Ste 180, Phoenix, AZ 85016-4702
This magazine is published by the PVA covers the latest on spinal cord injury research, new products, legislation, people with disabilities, accessible travel, computers, and more.
PVA also publishes Sports 'n Spokes magazine.

Pushin' On
205-934-3283
email: sciweb@uab.edu
www.spinalcord.uab.edu/show.asp?durki=21396
Subscription: Free to individuals with SCI
UAB Model System, 619 19th St S, SRC 529, Birmingham, AL 35249-7330
Newsletter published twice a year covering health, research, and other various issues related to SCI.

The Project
800-782-6387
www.miamiproject.miami.edu/x25.xml
Subscription: free online
PO Box 016960 (R-48), Miami. FL 33101-6960
Newsletter published 3 times a year about work of the Miami Project to Cure Paralysis.

SCI Access
734-936-7059
email: model_sci@umich.edu
www.med.umich.edu/pmr/modelsci/access.htm
Subscription: Free online
Newsletter of the University of Michigan Model SCI System, providing information on living effectively with SCI to persons with SCI, family members, and interested parties. Published 2 times per year.

Spinal Cord Injury Update
206-543-3600
Email: rehab@u.washington.edu
http://depts.washington.edu/rehab/sci/update.html
Box 356490, Seattle, WA 98195
Newslettter by University of Washington, Rehabilitation Medicine that contains articles on SCI for health care providers and consumers, as well as summaries of current literature on SCI.

*NOTE*More information on newsletters and magazines can be found at http://www.spinalcord.uab.edu/show.asp?durki=21817

Online Communication Resources

Through the Internet and Communication Software you can "talk" to others via your computer. Connect to news groups, bulletin boards, discussion groups, message boards, and Chat Rooms for topics related to SCI and disabilities.

CANADIAN ABILITIES FOUNDATION
www.enablelink.org/chat.html?showchat=1

DISABOOM.COM
http://www.disaboom.com/Forums/

DISABLED INDIVIDUALS MOVEMENT FOR EQUALITY NETWORK (DIMENET)
www.dimenet.com

VIRTUAL CENTER FOR INDEPENDENT LIVING
www.virtualcil.com

NEW MOBILITY MAGAZINE MESSAGE BOARD
http://www.newmobility.com/bb/ubbthreads.php

QUAD-LINK
www.2tim.net

QUAD-LIST
http://come.to/quadlist

VENT-USERS DISCUSSION GROUP
www.makoa.org/ventuser.htm

LOCAL AGENCIES

There are local or regional services that may be able to assist you with needs that occur due to spinal cord injury. A Social Worker at your rehabilitation center usually has the names of other agencies in your area.

INDEPENDENT LIVING CENTERS (ILCs) offer a variety of programs and services for individuals with disabilities. ILC staff work to help the individuals achieve independence and become active in their community by providing independent living skills, peer support, and advocacy. ILC staff help determine needs and make referrals concerning issues such as accessible housing and personal care assistance. To locate an ILC in your area contact:
* Independent Living Research Utilization (ILRU) Program Phone: 713-520-0232
www.ilru.org
email: ilru@ilru.org
2323 S. Shepherd, Ste 1000, Houston, TX 77019
* ILRU Directory of Centers www.ilru.org/html/publications/directory/index.html
In Alabama:
* Birmingham ILC www.birminghamilc.org
* Montgomery ILC 334-281-8780
* Mobile ILC 251-460-0301
* Jasper ILC 205-387-0159

STATE VOCATIONAL REHABILITATION SERVICES help individuals with disabilities find gainful employment. They work to ensure that the individual is prepared and trained to work in the job best suited for his/her skills and abilities. Services may include: evaluation and assessment, counseling, skills or job training, purchase of assistive devices, job placement and follow-up. The name of each state's agency may vary. In Alabama it is called Alabama Department of Rehabilitation Services. Look in the Blue Pages of your telephone directory under State Government or in the White Pages under Government Agencies for an office in your area.
* State Vocational Rehabilitation Services (for phone numbers) www.spinalcord.uab.edu/show.asp?durki=30035
* Alabama State Vocational Rehabilitation Services www.rehab.state.al.us
* Birmingham Vocational Rehabilitation Services 800-441-7609

PROTECTION & ADVOCACY SYSTEMS (P&A) are federally funded programs that work to protect the rights of individuals with disabilities by acting as legal advocates. They help with discrimination problems related to disability in the areas of housing, employment, education, transportaton and public services. To locate the P&A programs in your state, contact:
* National Disability Rights Network 202-408-9514
www.napas.org
email: info@ndrn.org
900 Second St NE, Ste 211, Washington, DC 20002
In Alabama contact: * Alabama Disabilities Advocacy Program (ADAP) 800-826-1675
www.ADAP.net
email: adap@adap.ua.edu
Box 870395, Tuscaloosa, AL 35487
* American's with Disabilities Act (ADA) Information Line 800-205-9986
* Statewide Technology Access & Response (STAR) 334-281-8780 or 800-441-7607
www.rehab.state.al.us/star

 

2.2. Professional Info Sheet

This information sheet provides resources on research and information centers, agencies, and organizations that provide materials for professionals who work with individuals with SCI.
Academy of Spinal Cord Injury Professionals (ASCIP)
ASCIP is a not for profit incorporated association comprised of 4 professional sections: American Paraplegia Society (APS), Association of Spinal Cord Injury Nurses (ASCIN), Psychologists and Social Workers (PSW) and Therapy Leadership Council (TLC).
Phone: 718-803-3782
Publication: Journal of Spinal Cord Injury Medicine
American Academy of Physical Medicine & Rehabilitation
The American Academy of Physical Medicine and Rehabilitation is the national medical society representing more than 8,000 physicians who are specialists in the field of physical medicine and rehabilitation (PM&R). PM&R physicians are nerve, muscle, bone and brain experts who treat injury or illness nonsurgically to decrease pain and restore function.
Phone: 847-737-6000
Publication: PM&R
American Occupational Therapy Association (AOTA)
AOTA on facebook Nationally recognized professional association of occupational therapists, therapy assistants, and students.
Phone: 301-652-2682
Publications:
  • American Journal of Occupational Therapy
  • OT Practice
  • E-Newsletter
  • SIS Quarterly
American Physical Therapy Association (APTA)
APTA on facebook APTA on LinkedIn National professional association fostering advancements in physical therapy practice, research, and education.
Phone: 800-999-2782
Publications:
  • Physical Therapy
  • PT IN Motion
  • Perspectives Magazine
  • Guide to Physical Therapist Practice
  • Podcasts
American Spinal Injury Association (ASIA)
ASIA aims to (1) to promote and establish standards of excellence for all aspects of health care of individuals with spinal cord injury from onset throughout life, (2) educate members, other healthcare professionals, patients and their families as well as the public on all aspects of spinal cord injury and its consequences in order to prevent injury, improve care, increase availability of services and maximize the injured individual's potential for full participation in all areas of community life, (3) foster research which aims at preventing spinal cord injury, improving care, reducing consequent disability, and finding a cure for both acute and chronic SCI, (4) to facilitate communication between members and other physicians, allied health care professionals, researchers and consumers.
Phone: 404-355-977
Publications:
  • International Standards for Neurological Classification of SCI Reprinted 2008, (also available in Spanish)
  • Guidelines for Use of Durable Medical Equipment For Persons with Spinal Cord Injury & Dysfunction
Association of Academic Physiatrist (AAP)
AAP on facebook AAP promotes the advancement of teaching and research in Physical Medicine and Rehabilitation within an academic environment.
Phone: 410-712-7120
Publications:
  • The American Journal of Physical Medicine & Rehabilitation
  • AAP Newsletterursing
  • AAP E-Brief
  • Rehab in Review
Association of Rehabilitation Nurses (ARN)
ARN on facebook ARN's mission is to promote and advance professional rehabilitation nursing practice through education, advocacy, collaboration, and research to enhance the quality of life for those affected by disability and chronic illness.
Phone: 800-229-7530
Publications:
  • ARN Network
  • Rehabilitation Nursing
Center for International Rehabilitation Research Information and Exchange
CIRRIE on facebook CIRRIE facilitates the sharing of disability-related information between rehabilitation researchers in the US and those in other countries.
Phone: 716-829-6743
Christopher and Dana Reeve Foundation
The Reeve Foundation on facebook The Reeve Foundation on LinkedIn The Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.
Phone: 800-225-0292
Newsletter: Research News
The Craig H. Neilsen Foundation
The Foundation is dedicated to supporting research and innovative rehabilitation programs to improve the quality of life for those with SCI.
Phone: 702-567-7072
Disability and Business Technical Assistance Centers (DBTACs)
DBTAC on facebookOffers a regional listing of DBTACs throughout the US that provides information, materials, technical assistance and training on the ADA and accessible technology including building accessible web pages, assuring that distance learning programs are accessible and assuring that technology purchases are those which are best able to work with assistive devices. The ADA Collection consists of more than 7,400 documents.
Phone: 800-949-4232
International Association of Rehabilitation Professionals
The International Association of Rehabilitation Professionals provides a community for rehabilitation professionals in their quest for education and professional growth, thereby promoting effective, interdisciplinary services for persons with disabilities.
Phone: 888-427-7722
Publications:
  • The Rehabilitation Professional (RehabPro)
  • Journal of Life Care Planning (JLCP)
Job Accommodation Network (JAN) (En Español)
JAN on facebook JAN on LinkedIn JAN is the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues. Working toward practical solutions that benefit both employer and employee, JAN helps people with disabilities enhance their employability, and shows employers how to capitalize on the value and talent that people with disabilities add to the workplace.
Phone: 800-526-7234
Newsletter: JAN E-News
National Association for Home Care (NAHC)
NAHC on facebook The National Association for Home Care & Hospice is the nation's largest trade association representing the interests and concerns of home care agencies, hospices, and home care aide organizations.
Phone: 202-547-7424
Magazine: Caring
National Center for the Dissemination of Disability Research (NCDDR)
NCDDR's scope of work focuses on knowledge translation (KT) of NIDRR-sponsored research and development results into evidence-based instruments and systematic reviews. NCDDR is developing systems for applying rigorous standards of evidence in describing, assessing, and disseminating research and development outcomes.
Phone: 800-266-1832
Publications:
  • FOCUS: Technical Briefs
  • Knowledge Translation: Introduction to Models, Strategies, and Measures
  • NCDDR's Task Force Papers
National Clearinghouse of Rehabilitation Training Materials (NCRTM)
NCRTM on facebookWe serve the profession of Vocational Rehabilitation as a centralized resource for the development, collection, dissemination, and utilization of training materials; as a forum for advancing knowledge through applied research and open dialog; and as a marketplace for career and staff development.
Phone: 866-821-5355
Journal: Vocational Evaluation and Work Adjustment Association
National Institute on Disability and Rehabilitation Research (NIDRR)
NIDRR provides leadership and support for a comprehensive program of research related to the rehabilitation of individuals with disabilities. All of our programmatic efforts are aimed at improving the lives of individuals with disabilities from birth through adulthood.
Phone: 202-245-7640
National Rehabilitation Association (NRA)
NRA on facebook NRA on LinkedIn NRA seeks to be the premier organization nationwide connecting thousands of professionals in the area of vocational rehab. We are here to serve our members and provide them with up to date information on advocacy, issues and networking opportunities.
Phone: 703-836-0850
Publication: Journal of Rehabilitation
Newsletter: Contemporary Rehab
National Rehabilitation Counseling Association (NRCA)
NRCA is the largest national organization representing rehabilitation counselors practicing in a variety of work settings: private non-profit agencies, hospital medical settings, educational programs, private-for-profit businesses, state/federal agencies, private practice, unions, and others.
Phone: 703-361-2077
Publication: Journal of Applied Rehabilitation Counseling
National Rehabilitation Information Center (NARIC) (En Español)
NARIC on facebook NARIC provides direct, personal, and high-quality interactive information services to anyone throughout the country in the disability and rehabilitation community.
Phone: 800-346-2742
Brochures:
  • Advocacy
  • Assistive Technology
  • Spinal Cord Injury
  • Employment
  • Universal Design
  • Finding Rehabilitation Services

Newsletters:

  • RehabWire
  • reSearch
Paralyzed Veterans of America (PVA)
PVA on facebook The PVA empowers the spinal cord injured veterans with what they need to achieve the things they fought for: freedom and independence.
Phone: 800-424-8200
PVA Clinical Practice Guidelines:
  • Acute Management of Autonomic Dysreflexia
  • Bladder Management for Adults with SCI
  • Depression Following SCI
  • Neurogenic Bowel Management in Adults
  • Outcomes Following Traumatic SCI
  • Respiratory Management Following Spinal Cord Injury
  • Prevention of Thromboembolism
  • Pressure Ulcer Prevention and Treatment
  • Respiratory Management Following SCI
  • Early Acute Management in Adults with Spinal Cord Injury
  • Sexuality and Reproductive Health in Adults with Spinal Cord Injury
  • Preservation of Upper Limb Function Following Spinal Cord Injury
Model Systems Knowledge Translation Center (MSKTC)
MSKTC is a national center that works to put research into practice to serve the needs of people with spinal cord injuries.
Phone: 206-685-4181
National Spinal Cord Injury Statistical Center (NSCISC)
NSCISC supervises and directs the collection, management, and analysis of the world's largest SCI database from the Model SCI Systems. In addition to maintaining the national SCI database, the NSCISC personnel conduct ongoing, database-oriented research that has had a significant impact on the delivery and nature of medical rehabilitation services for SCI patients.
Phone: 205-934-3320
Publicatioins:
  • Facts and Figures at a Glance (English and Spanish)
  • Annual Statistical Reports
Rehabilitation Research and Training Center on Secondary Conditions in Individuals with SCI
SCI-RRTC on facebookOver 5 years (2009-2014), our Center will carry out 3 research studies and 3 training projects to study the following conditions:
  1. Obesity;
  2. Cardiometabolic Syndrome (which is a condition that can lead to obesity, diabetes, high blood pressure, and other conditions); and
  3. Pressure Ulcers, or skin breakdowns

Phone: 877-278-0644
Training Materials:

  • Cardiometabolic Education Package
  • Bone Health and Osteoporosis Education Package
  • Robotics Package
  • State of Science Video package
  • Exercise and self efficacy package

Model Spinal Cord Injury Systems of Care
NIDRR funds 14 Model SCI Centers across the United States that work together to demonstrate improved care, maintain a national database, participate in independent and collaborative research, and provide continuing education relating to spinal cord injury.

3. Health and Wellness

3.1. Health Resource Sheets

Information to Help You Maintain Your Health and Wellness - educational material to help spinal cord injury survivors living in the community maintain their health.  For additional information visit - http://www.craighospital.org/SCI/healthAndWellnessInfo.asp or email HealthResources@craighospital.org.

4. Support Forums

4.1. CareCure Forum

We are the CareCure Community

SCI Care - The art and science of managing therapies, routines, medication, supplies, equipment and everything else needed to maintain the spinal injured person in top health. Ask our SCI-Nurses questions in the Care Forum, New SCI Forum, Relationships and Sexuality Forum, Transverse Myelitis & Atraumatic SCI, and other forums. Visit our Caregiving, Equipment and Exercise Forums.

SCI Cure - Therapies that restore function in spinal cord injury and related conditions. The Cure Forum contains comprehensive and up-to-date news on curing spinal cord injury. The Research Forums lists abstracts of the latest scientific articles on brain injury & stroke, neurodegeneration, multiple sclerosis, neuropathic pain, spinal cord injury, stem cells, and tranverse myelitis. Exchange information about Clinical Trials, Equipment & Services, Doctors & Clinics.

CareCure has over 70 forums where we discuss everything from Life to Legislation & Advocacy, from Sports and Travel to Pain, from Computers to Politics. We discuss it all! Please come join us!

4.2. Inspired Spinal Cord Injury Support Forum

Inspired Spinal Cord Injury Support Forum

We are keen to promote a positive outlook for those with SCI and be good role models ourselves and encourage our members to share experiences and support each other. We welcome groups and organisations who are equally focused on working towards improvements in SCI treatments and research, professionals who work within the SCI field such as carers, medics. We hold a very inclusive policy that all disabilities are welcome including their families and friends even though our forum is spinal cord injury based.


We want to encourage our members to become involved actively on forum matters and have provided a section where suggestions can be posted. These suggestions will then be reviewed and discussed and ultimately voted on. This way we ensure that our members know that they and their opinions are of value to us ...'Inspired' is truly our members forum.


Read more: http://www.inspiredsciforum.com/page/about#ixzz2gh3f3OQL

4.3. Pushrim

Pushrim is a social network and support resource for friends, family, and survivors of spinal cord injury. Sign up for free and joing the community for free!

4.4. Strong Wheeled

Strong Wheeled

In 2005 a new world was brought to my attention, and this was the world of wheelchairs. Unfortunately, I had never paid much attention to those with life in a chair, just as most of the world today. This is the year that I would become a paraplegic due to a motorcycle accident. Although I had a supportive family, I was very young and very ignorant. I would not accept their empathy as I felt that since they were not sitting where I was, they could not justifiably empathize. As I have matured, I have come to realize that they were not trying to empathize with my wheelchair; rather, they were trying to empathize with the hardships I would face and the things they thought I had lost. The following years would be full of trials and tribulations and I was merely a teenage boy trying to become a man in a wheelchair. Over the course of the past few years and being a complete, T5, paraplegic that suffered a brain injury, I have come to drive, live independently, and obtain my college degree. It seems that no matter where I go I am questioned how and why. This inspired me to create StrongWheeled, a place where the ones with so little continuously accomplish so much.

StrongWheeled is the essence of anyone who live in a wheelchair. Whether it be because of age, spinal cord injuries, genetic defects, or whatever the case, those who continue on have incredibly strong will.

....... You can follow us at www.twitter.com/strongwheeled or join our facebook page at www.facebook.com/strongwheeled1.

5. On-Line Peer Support Groups

5.1. Facing Disability online Facebook Support Group

FacingDisability.com has created an exciting new Facebook support group called, You Are Not Alone - Dealing With Spinal Cord Injury. It is a special place where people are discussing everything and anything related to living life with paralysis. Connect here and click, "Join".

5.2. Able Thrive

Able Thrive is a one-stop platform that curates articles, videos and resources for living well with a disability from people, organizations, and hospitals worldwide. We dig up all the content up so you don't have to. No more relying on luck or hours of searching on Google or YouTube to find answers. Browse, search or filter our posts based on your needs and interests and find what you need to thrive!

Able Thrive Facebook

5.3. All American Role Models

All American Roll Models is a not-for-profit corporation that was established to provide support services for individuals with physical disabilities. Our website and social networking community is available to anyone that wants to achieve success in their life, no matter what their circumstances may be. Join our organization and become part of a powerful movement that is sweeping across the country.

5.4. BACKBONES

Mission

BACKBONES exists to provide free support for people with spinal cord injury and their families. Through our network we facilitate telephone, in-person, or web-based connections and encourage growth by the sharing of experiences and ideas. As a host to events, BACKBONES creates an inviting atmosphere where people can ask questions, learn from each other informally, and make lasting friendships.

BACKBONES is a federally recognized 501(c)(3) non-profit organization.

Connect.

BACKBONES Fusions, Nominate a High Roller

Get Involved.

Volunteer, Become a sponsor, Make a donation

5.5. FacingDisability.com

FacingDisability.com
Connects families who suddenly have to deal with a spinal cord injury with people like them who have already "been there" and "done that." It's a first-of-its-kind Internet-based effort to collect life experiences surrounding spinal cord injuries and bring them to the world

5.6. Friends Health Connection

 A hub for health

What began in 1988 as a one-to-one support group for those facing medical issues has grown into a thriving national network of health and wellness services. Friends' Health Connection enhances mind, body and soul through our personalized support network and dynamic educational and motivational programs. We work with hospitals and other nonprofit organizations to complement their program offerings and connect people with resources and support that can enrich their lives.

Friends' Health Connection was founded by Roxanne Black 20 years ago. When Roxanne was diagnosed with systemic lupus at the age of 16 she wanted to find others who could relate to her situation. This need led her to begin Friends' Health Connection.

Friends' Health Connection is proud to be a non-profit 501(c)(3) organization.

 

5.7. Self-help/support group searchable database

The American Self-Help Group Clearinghouse offers a search able database of self-help and support groups. they are centered in New Jersey and therefore have great detail of all individual groups in that state but also have connections to many national organizations as well (to access their support group connections)

5.8. Shepherd Center phone or email support

Spinal Cord Injury Support via Phone or Email

If coming to Shepherd Center is not a possibility, the SCI Program can provide peer support over the phone or via email. For more information, call SCI Peer Support at 404-350-7373.

5.9. Vent Users Residing In Facilities (Facebook Group)

Vent Users Residing in Long-Term Facilities Facebook Group -submitt request to be included into this closed discussoin and support group.

6. Other SCI/D Support Groups

6.1. The Amputee Connection

The Amputee Connection mission is to serve and encourage people with limb loss to enhance their physical and emotional health through peer counseling, educational and recreational programs, and public relations.

7. Peer Visitation

7.1. Training Video

A video program showing actual peer visitation training sessions.  Trainees will deal with in peer visits: establishing trust; losses & grieving; positive & negative coping; sexuality & body image; and use of community services. For additional information, visit - http://sciboston.com/peervisitation.htm

Cost: DVD or VHS, $35/$25.