Useful Websites to address Family/SCI Support Issues

1.   Spinal Cord Injury Information Network-Adjusting after a Spinal Cord Injury-
http://www.spinalcord.uab.edu/show.asp?durki=45578

Spinal Cord Injury Information Network

http://www.spinalcord.uab.edu/

This site has an excellent variety of SCI related resources in addition to the the above link-UAB-Spinal Cord Injury - InfoSheet #16-Adjustment after a spinal cord injury. The following are a few of the many other SCI areas of interest found on the Spinal Cord Injury Information Network:

• SCI facts/stats and frequently asked questions
• Medical related topics such as acute care of SCI, anatomy & physiology of SCI
• Psychosocial issues such as education & employment, aging with SCI, caregiver issues, and sexuality after SCI
• Equipment /Accessibility topics including house and van modications
• SCI related publication
• SCI related education & training resources
• Links for Disability Agencies - Organizations - Associations
• Exercise and disabilty sports

2.   Paralyzed Veterans of America Publications-
http://www.pva.org/site/PageServer?pagename=pubs_generalpubs#AHD

Paralyzed Veterans of America provides a vast variety of very informative publications related to spinal cord injury including:

• PN and Sports 'n Spokes Magazines
• Depression Following SCI
• Neurogenic Bowel Management in Adults with Spinal Cord Injury
• Outcomes Following Traumatic SCI
• Pressure Ulcer Prevention and Treatment Following Spinal Cord Injury
• Autonomic Dysreflexia: What You Should Know 
• Depression: What You Should Know
• On the Move: A Financial Guide for Persons with Spinal Cord Injury
• Yes, You Can! A Guide to Self-Care for Persons with Spinal Cord Injury
• Roll Models: People Who Live Successfully Following Spinal Cord Injury and How They Do It
• Accessible Home Design: Architectural Solutions for the Wheelchair User
• Fair Housing, How to Make the Law Work for You
• Preventing Discrimination in the Workplace--The Americans with Disabilities Act. 

Note  that as part of thier mission, Paralyzed Veterans of America produces many of their publications referenced above as downloadable electronic documents.

3.   United Spinal Association-

http://www.unitedspinal.org/disability-publications-resources

This is an excellent site which provides practical information on isuues related to SCI icluding:

• Adaptive sports & recreation
• Wheelchairs & assistive technology
• Healthcare
• Accessible travel
• Advocacy
• Informative pamphelts
• Online magazines and journals

 The mission of the United Spinal Association is to provide expertise, create access to resources and strengthen hope, thereby enabling people with spinal cord injuries and diseases to fulfill their potential as active members of their communities. 

4.   Web MD- SCI Related Topics-

http://www.webmd.com/brain/tc/living-with-a-spinal-cord-injury-overview

This site provides a decent variety of very informative topic discussions related to spinal cord injury including:

• Spinal cord injury overview
• Waht happens
• Rehabilitation
• Bladder care
• Bowel care
• Pressure sores
• Lung care
• Intimacy and fertility
• Living with spinal cord injury
• When to call the doctor
• Concerns for a caregiver
• Search for a cure

5.   disABILITY Information and Resources-

http://www.makoa.org

disABILITY Information and Resources is a Web site containing an extensive list of links to organizations and commercial sites of interest to the disabled. It includes links relating to clothing, computer accessibility, wheelchairs and other mobility products, legal and advocacy resources, travel and recreation resources, independent living, and more. The site was created and is maintained by a disabled individual.

6.   Skin Care after a Spinal Cord Injury-

http://www.healthtouch.com/bin/EContent_HT/cnoteShowLfts.asp?fname=07178&title=SKIN+CARE+AFTER+SPINAL+CORD+INJURY++&cid=HTHLTH

This site provides practical information about pressure sores and prevention strategies.

7.   The Spinal Cord Injury Resource Center-

http://www.spinalinjury.net/index.html

This site provides a vast amount of information helping to explain basic anatomy, physiology, and the complications resulting from a spinal cord injury.  Topics include pressure sore, smoking and SCI, Autonomic Dysreflexia, spinal cord 101, chat room, message boards and books on SCI.

8.    Spinal Cord Injury Information Pages

http://www.sci-info-pages.com

This site provides free and informative resources to those living with a spinal cord injury or other disabling injuries or diseases of the spine.   The site was created by a person with a spinal cord injury (C5/6 Quadriplegic per driving accident in 1999) and is meant to be the

 " best of the web" site for SCI health and caregiver issues with regularly updated resources, new features, links and more.     

9.   Care Cure Community-  

http://sci.rutgers.edu/index.php?page=home

CareCure has over 70 forums where people with spinal cord injuies discuss everything from Life to Legislation & Advocacy, from Sports and Travel to Pain, from Computers to Politics.

• Ask their SCI-Nurses questions in the Care Forum, New SCI Forum, Relationships and Sexuality Forum, Transverse Myelitis & Atraumatic SCI, and other forums.
•  Visit their Caregiving, Equipment and Exercise Forum. 
• 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, tranverse myelitis as well as Exchange information about Clinical Trials, Equipment & Services, Doctors & Clinics.

10.   Social Security Administration-  

http://www.ssa.gov

An essential site to find information about potnetial disabilty benefits.  The Social Security Administration (SSA) provides disability benefits under two programs:

• The Social Security disability insurance program pays benefits to you and certain family members if you worked long enough and paid Social Security taxes.  Your adult child also may qualify for benefits on your earnings record if he or she has a disability that started before age 22.

• The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources.

  SSI benefits also are payable to people 65 and older without disabilities who meet the financial limits.

11.   U S Department of Health and Human Services- CMS Centers for Medicare and Medicaid Services- 

http://www.cms.hhs.gov

An essential site to find information about potential health insurance benefits based on a person's disability.  CMS is the Centers for Medicare & Medicaid Services. Formerly known as the Health Care Financing Administration (HCFA).  CMS is the federal agency responsible for administering:

• Medicare
• Medicaid
• SCHIP (State Children's Health Insurance)
• HIPAA (Health Insurance Portability and Accountability Act)
• CLIA (Clinical Laboratory Improvement Amendments)
• Several other health-related programs.

12.   Hiring your own Personal Care Attendant- 

http://images.main.uab.edu/spinalcord/pdffiles/info-6.pdf

An excellent resource published by the University of Alabama at Birmingham-Spain Rehabilitation Center, Spinal Cord Injury- InfoSheet #16-Personal Care Attendant.   This site provides guidelines and ideas that can help you in employing and managing your personal care assistant who helps with many of the basic activities of daily Living (ADL'S) such as getting in or out of bed, bathing, dressing, driving, shopping, or cleaning.  In addition, additional Resources on Personal Care Assistants are provided. 

13.   Choosing a Caregiver- 

http://www.state.sc.us/ddsn/pubs/caregiver/toc.htm

A comprehensive manual to educate yourself before you start the process of hiring a attendant/caregiver.  There are many factors to consider, such as whether the applicant is qualified and experienced and, if not, whether he or she is capable of being trained.  This manual is published by the South Carolina department of Disabilities and Special Needs. 

14.   Family Caregiver Alliance-  

http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=784

This link provides caregivers with self help guidelines: Taking Care of You - Self Care for family Caregivers.   Founded in 1977, Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. FCA  offers programs at national, state and local levels to support and sustain caregivers.

15.   Spinal Cord Injury Resource Center-

http://www.spinalinjury.net/index.html

This Web site was created and is maintained by a young man with a spinal cord injury. It is notable for up-to-date and frequently used bulletin boards on general spinal cord information, relationships and sexuality, research and rehabilitation, and caregiver information.

16.  Acoholics Anonymous-

http://www.alcoholics-anonymous.org

The site provides basic information about Alcoholics Anonymous, resources and how to  find AA meetings in your area.   Alcoholics Anonymous is a fellowship of men and women who share their experience, strength and hope with each other that they may solve their common problem and help others to recover from alcoholism. The only requirement for membership is a desire to stop drinking.

17.   Narcotics Anonymous-

http://www.pensacolana.org/5b.html

Find a Narcotics Anonymous meeting in your area. Just click on the state and find meeting lists.

18.  U.S. Department of Health and Human Services-Substance Abuse and Mental Health Services Administration- 

http://www.mentalhealth.org

A good Web page for information about mental health programs.   CMHS pursues its mission by helping States improve and increase the quality and range of treatment, rehabilitation, and support services for people with mental health problems, their families, and communities.

19.  VOCATIONAL REHABILITATION - STATE OFFICES

http://www.jan.wvu.edu/SBSES/VOCREHAB.HTM

This site provides state by state contact information for contacting your local Vocational Rehabilitation office.  Vocational Rehabilitation, a state-supported division of services, assists individuals with disabilities who are pursuing meaningful careers. VR assists those individuals to secure gainful employment commensurate with their abilities and capabilities through local job searches and awareness of self-employment and telecommuting opportunities.

20. Find Law For The Public 

 http://estate.findlaw.com/estate-planning/wills/  

This site provides potential solutions to to a large variety of legal issues including a comprehensive section on Estate Planning, Wills, & Trusts.  Topics covered include:

• Planning 101
• Wills
• Trusts
• Living Wills
• Estate Laws
• Estate Forms
• Estate & Gift Taxes
• State Probate Courts
• Estate Planning - Get Help Now

21. The Special Needs Trust

http://www.kidsource.com/kidsource/content4/estate.dis.all.3.3.html

One of the only reliable methods of making sure that the inheritance actually has a chance of reaching a person with a disability when he or she needs it is through the legal device known as a Special Needs Trust (SNT). The SNT is developed to manage resources while maintaining the individual's eligibility for public assistance benefits. How is this done? Simply put, the family leaves whatever resources it deems appropriate to the trust. The trust is managed by a trustee on behalf of the person with the disability. This site provide useful information rearding Special Needs Trusts

22.  New Mobility- The magazine- 

http://www.newmobility.com

New Mobility Magazine encourages the integration of active-lifestyle wheelchair users into mainstream society, while simultaneously reflecting the vibrant world of disability-related arts, media, advocacy and philosophy. Our stories foster a sense of community and empower readers to:

• Participate in all areas of life, including education, work, love, sex, home ownership, parenting, sports, recreation, travel and entertainment
• Be informed of and take charge of health concerns
• Obtain appropriate technologyhttp://sci.rutgers.edu/index.php?page=home
• Assert legal rights.

23.   Shepherd Center-A Catastrophic Care Hospital

http://www.shepherd.org/index.asp

Shepherd Center is a private, not-for-profit hospital located in Atlanta, Georgia devoted to the medical care and rehabilitation of people with spinal cord injury and disease, acquired brain injury, multiple sclerosis and other neuromuscular problems.  Since 2000, Shepherd Center has been ranked by U.S. News & World Report as one of the nation's best rehabilitation hospitals. The Shepherd Center website provides comprehensive information on topics including:  patient care, admissions and referral process, SCI research, SCI publications, advocacy and resources.

24.     Shepherd Center-Spinal Column Magazine and Newsletters

http://www.shepherd.org/news/pub.asp

Spinal Column Magazine is Shepherd Center's quarterly magazine is geared to current and former patients, healthcare professionals and donors. The magazine features patient profiles, medical and treatment news, upcoming events, research features, volunteer and donor recognition and more.

AXIS newsletter is published by Shepherd Center that covers news and information about research, medical treatments and healthy living for people with spinal cord injuries. It is published twice per year.

NeuroTransmitter newsletter is published by Shepherd Center's Acquired Brain Injury program for former patients and industry professionals. The newsletter covers news and information about research, medical treatments and healthy living for people with brain injuries. It is published twice per year.

Synapse newsletter is published by the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center. It contains news about new medications, tips for managing MS, research on the horizon and other information pertaining to MS. It is published twice per year.

25.   Apparelyzed- Spinal Cord Injury Peer Support

http://www.apparelyzed.com

If you have any spinal cord injury related questions, please visit our Discussion Forums and join in on the many topics there. We will do our best to help you, or at the very least, put you in contact with someone who can if we can't. The discussion forum is intended to be a free flow of information between spinally injured people, careers, and their friends, and everyone is welcome.  Even if you don't have any questions, take a look at the forum anyway, as you may be able offer help and advice to others who have questions.  In addtion, this site has a wide variety of SCI related resources and information.