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  • Accessible Air Travel

    Although air travel today is available to most people, barriers to access still exist. A passenger with a disability may encounter obstacles just to reach an airplane seat. This pamphlet from the United Spinal Association explains what to expect from the time an airline reservation is booked, to the moment the flight touches down takes the surprises out of traveling. 

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  • American Association of Retired Persons Grandparent Foundation Information Center

    This section of the AARP website provides articles and information for grandparents who play an active role in their grandchildren's lives. The website offers extensive information on finding government aid programs, legal advice, tips on grandparenthood, and caregiving. There are a variety of resources including "Grandparenting a Child with Special Needs."

    Where to Start:
    Under More Information, select the GrandCare Support link. Click on Search Form, and fill in your information. This will direct you to programs in your area that specifically apply to your needs as a grandparent.

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  • Assist

    This website developed by the Graduate School of Architecture at the University of Utah and the Utah Society of the American Institute of Architects calls itself a "community design center," and offers information on constructing an accessible community. It offers excellent information and tips on creating an accessible home in its downloadable "Guidebook to the Accessible Home."

    Where to Start:
    On the right, select the Accessibility Design tab. Toward the bottom of this page is a link to download "The Assist Guidebook to the Accessible Home." This is an in-depth manual on what to consider in designing an accessible home and offers good ideas on home modifications.

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  • CarePages

    Through Carepages, friends and families can check up on anyone who is injured or sick (Carepages are not limited to spinal-cord injuries). Here you can create a personal web page or blog on which you can provide up-to-date information on your loved one's condition. Directing family and friends to this site lets them know how things are going without requiring dozens of repetitive phone calls or email updates. There are also many forum threads covering things like caregiving and emotional health to read and contribute to, or you can start your own.

    Where to Start:
    Within the Learn tab at the top is a section called Tips. Here you will find articles on living a healthy, compassionate life. There are tips on managing money, comforting friends, helping yourself eat and sleep well while under stress, etc.

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  • CaringBridge

    Using CaringBridge, you can create a personal website for yourself or a loved one during a critical illness or catastrophic event. Using features such as the patient journal and photo gallery, you can update friends and family who can then show their support by posting messages in your online guestbook.

    Where to Start:

    Looking through some of the personal stories on the main page can give you an idea of what CaringBridge has to offer. Also, viewing the video within the Our Service page accessed from the left of the About tab, will give you a quick introduction to the website and how it works.

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  • Children's Hospital Boston

    Children's Hospital Boston is a 396-bed comprehensive center for pediatric health care. As one of the largest pediatric medical centers in the United States, Children's offers a complete range of health care services for children from birth through 21 years of age.

    Children's records approximately 25,600 inpatient admissions each year, and our 228 specialized clinical programs schedule more than 543,100 visits annually. Additionally, the hospital performs 25,800 surgical procedures and 200,000 radiological examinations every year.  

     

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  • Christopher & Dana Reeve Foundation

    The Christopher and Dana Reeve Foundation is committed to raising funds to support research on spinal cord injury and to improving the quality of life of people living with paralysis. Ask Our Expert is a useful way to connect to someone who can answer your questions directly via phone or email.

    Where to Start:
    Select Get Help from the menu on the right and scroll down to Start here if you are new to spinal cord injury. This section offers basic information and resources including a free book called the "Paralysis Resource Guide" and links to the Reeve Foundation Paralysis Community. For medical research information, click Research on the left of the homepage, which takes you to detailed information about basic research, clinical trials, and leading scientists and their work.

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  • Depression and Spinal Cord Injury

    Depression is common and can affect anyone. About 1 in 20 Americans (over 11 million people) get depressed every year. Depression is even more common in the spinal cord injury (SCI) population - about one in five people.

    Where to Start

    Begin by scrolling down to the bottom of the Factsheet to take the MSKTC Depression Self-Test.

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  • Disability Etiquette

    This pamphlet, designed by the United Spinal Association, is a great resource for businesses, schools, organizations, staff training and disability awareness programs. You don’t have to feel awkward when interacting with, or when you meet, a person who has a disability. This booklet provides tips for you to follow that will help create positive interactions and raise everyone’s comfort levels.  

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  • Disability Resource Directory

    The Disability Resource Directory is guide to disability, medical and health information on the internet.   It provides up-to-date resources from around the world, providing a current and comprehensive directory of resources for the disability community.

    Where to Start:

    Click on Spinal Cord Injury to find information on Spinal Cord Injury and other disability resources.     

     
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  • Employment after Spinal Cord Injury

    Most people with spinal cord injuries (SCI) want to work yet need support, training and vocational rehabilitation services to help them obtain and keep a job. These sources of support may help to overcome many barriers that are outside the individual’s control, such as financial and health care issues, accessibility, and employer attitudes. 

    Where to Start

    Follow this link to learn more about vocational rehabiliation, work place disability rights, and landing a job after spinal cord injury. 

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  • Family Caregiver Alliance

    Though primarily based in California, the FCA offers comprehensive online tools for caregivers in all locations and situations, including those caring for a spinal cord injury. Users can listen to streaming audio of caregiver seminars in the Teleconference Archive. Workshops, classes and conferences are also available across California. The Caregiving Fact Sheets offer extensive lists of information and tips on topics, such as self-advocacy and stress management.

    Where to Start:
    Begin by clicking the Fact Sheets & Publications tab at the top. Then, select Caregiving Issues and Strategies at the top of the "Fact Sheets" list. This provides tips and suggestions on caregiving topics, such as advocacy, residential care options, and self-care.

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  • Family Center on Technology and Disability

    This website provides detailed information on the latest assistive technology. Here you'll find extensive resources and AT product lists, which can be searched by function. You can search for organizations in your area, find fact sheets about assistive technology, and visit online discussions about disability and technology.

    Where to Start:
    On the left select Resource Reviews. This is a list of assistive technology websites and tools. You can search the hundreds of resources by topic, type of equipment, or disability.

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  • Family Voices

    This national network is committed to providing families of children with disabilities with tools to advocate for family-centered health care, which Family Voices describes as "community-based, coordinated...and guided by what is best for each child and family." In this system, the family is emphasized as an equal partner in decision-making for health care. This website offers a wealth of material, including statistics and information on disability-rights legislation, details on family support systems and links to initiatives to improve family-focused health care. You'll also find contact information for the Family Voices organization closest to you.

    Where to Start:
    On the left is a menu called Learn More About. Under this heading you'll find links that give you an introduction to Family Voices and its mission. Families and Title V leads you to the basic information about Title V; a law that requires states to provide programs to assist children with disabilities or chronic conditions - and how it affects your family.

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  • Fire Safety for Wheelchair Users

    This pamphlet, created by the United Spinal Association, gives important tips to handle situations before and during a fire, and to address fire prevention within homes. The tips are a model that can be modified and adjusted to fit the varying types of homes and structures. 

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  • GovBenefits.gov

    Created through a partnership of federal agencies, this website is an excellent tool for finding and accessing the government programs designed to help you. The website offers the option to search for benefits according to category, location, or federal agency.

    Where to Start:
    Select Benefits at the top and decide how you would like to search for available benefits from the options under the tab. A good way to start is by selecting Take Questionnaire to help you decide which benefits to look for.

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  • Job Accommodation Network (JAN)

    Provided by the U.S. Department of Labor's Office of Disability Employment Policy, JAN is a service intended to help employees and employers create a more accessible environment by providing information about job accommodations and legal information for people with disabilities. JAN provides consulting services to decide the best course of action in making a business accessible as well as ideas for accommodating disabilities in the work place.

    Where to Start:
    Click through the Frequently Asked Questions on the lower menu to get acquainted with the program. Then, select the category that best defines your situation under the For Individuals tab. This displays the accommodations that can be made.

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  • Medicare Rights Center

    This is a nonprofit consumer service organization comprised of 40 staff members and more than 200 volunteers dedicated to helping people with Medicare access their benefits and rights to the fullest. The website provides detailed information and resources on what benefits you're entitled to and how to find them.

    Where to Start:
    From the left-hand menu select Medicare Answers. This page offers topics such as Medicare Advice for Caregivers and Help Paying for Medicare Costs. If you don't find answers to your questions here, you can click Medicare Interactive Counselor and email your specific query.

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  • MedlinePlus Spinal Cord Injury

    MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations to give easy access to medical journal articles, information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and latest health news.

    Where to Start:
    This link will lead you to MedlinePlus' spinal cord injury home page. Here you'll find basic information and resources on adult and pediatric spinal cord injuries.

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  • Mothers Against Drunk Driving® (MADD)

    Founded by a mother whose daughter was killed by a drunk driver, Mothers Against Drunk Driving® (MADD) is the nation’s largest nonprofit working to protect families from drunk driving and underage drinking. One of the largest victim services organizations in the U.S., MADD also supports drunk and drugged driving victims and survivors serving one person every 9 minutes at no charge. So long as drunk driving impacts our families and friends, MADD's goal is to increase the number of victims and survivors served, and to continually improve the quality of those services.

    Where to Start: 

    If you or a family member was affected by drunk driving, start by select Victim Services.

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  • National Disability Rights Network

    This is the website of the nonprofit organization whose goal is to give people with disabilities an equal opportunity to succeed in society. The site offers legal information and tips on how to be an effective advocate by providing fact sheets and court cases as examples as well as a list of common acronyms and terms to help clarify the legal jargon and abbreviations.

    Where to Start:
    From the menu on the left, select Issue Areas. This gives general topics such as Criminal Justice, Housing, and Medicare/Medicaid. Under each topic you will find advocacy tips, court cases, fact sheets and articles to help you learn more about the subject and how it applies to you.

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  • National Dissemination Center for Children with Disabilities (NICHCY)

    NICHY offers a broad range of childhood disability resources, most of which are also available in Spanish. It serves as a national information resource on disabilities in infants, toddlers, children and youth.

    Where to Start:
    Select State Specific Information and then enter your state of residence. This will direct you to state agencies, disability specific categories, and organizations for disability and for parents.

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  • Next Step in Care

    The United Hospital Fund, which is based in New York, created this website to help improve patients' transitions to different types of care facilities. The site is packed with resources for every step of caring for a loved one, from hospital admission to discharge and beyond which apply regardless of your location. Guides are provided that offer information on medical policies and tips on what you may need during a doctor visit or hospital stay. The checklists will help you keep medical records and information organized and help you prepare for your loved one's needs in each stage of care.

    Where to Start:
    Select For Family Caregivers from the left-hand menu and begin with How to Get the Most from the Next Step in Care Website at the top of the subsequent page to get a solid introduction that explains exactly what the website has to offer. The For Family Caregivers page also features links to helpful articles and other resources.

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  • OrthoInfo

    OrthoInfo aims to share the most up-to-date news and information about orthopaedic surgery. The website contains over 600 articles about fractures, sports injuries, joint replacement, children's' orthopaedics, and other topics. It also highlights tips on safety and prevention, and all of OrthoInfo’s articles are written and peer reviewed by orthopaedic surgeons who are experts in their field.

    Where to Start:

    Start by select Spine and Neck under Parts of the Body.  Scroll down to Patient Stories to learn more about Spinal Cord Injury.

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  • Pain after Spinal Cord Injury

    Pain is a serious problem for many people with spinal cord injuries (SCI). Pain after SCI can occur in parts of the body where there is normal sensation (feeling) as well as areas that have little or no feeling. The pain is very real and can have a negative impact on quality of life. A person in severe pain may have difficulty carrying out daily activities or participating in enjoyable pastimes. 

    Where to Start

    Follow this link to learn more about the different types of pain many experience after SCI, and the ways it is can be treated. 

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  • Paralysis Resource Guide

    The Paralysis Resource Guide, produced by the Christopher & Dana Reeve Foundation, is a reference and lifestyle tool for people affected by paralysis. The book includes details on medical and clinical subjects related to all causes of paralysis, as well as health maintenance information. The fully-illustrated book provides a detailed overview of biomedical research, assistive technology, sports and recreation activities, legal and civil rights, social security and benefits, and numerous lifestyle options.

    Where to Start

    The Paralysis Resource Guide (third edition) is a free 442-page book, a comprehensive, illustrated information tool for people affected by paralysis and for those who care for them. The guide is available in multiple electronic formats and hard copy. Follow this link to find more informaiton. 

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  • Paralyzed Veterans of America

    The PVA's mission is to improve the quality of life of its members by advocating for improved health care, research, education and awareness of disability rights and programs for veterans. The website focuses primarily on injured veterans; however, the information on disability rights and sports and recreation applies to veterans and non-veterans alike.
     

    Where to Start: The Disability Rights page, accessed from the left-hand menu, is a useful place to obtain information about what's being done on Capitol Hill to enable and protect veterans and others living with disabilities. The Medical Services section can connect veterans to the closest Paralyzed Veterans of America Spinal Cord Injury Center.

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  • Partnership for Prescription Assistance

    For individuals who don't have prescription drug coverage or the means to pay full price for necessary medication, this website offers solutions. The PPA provides resources and access to more than 475 public and private programs designed to help you find affordable medication. The PPA is sponsored by several American pharmaceutical companies and the American Academy of Family Physicians, Easter Seals and the Urban League.

    Where to Start:
    Selecting Prescription Assistance Programs from the top menu bar leads you to a page of useful resources including a free or low-cost-clinic finder and lists of patient assistance programs.

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  • Rehabilitation International (RI)

    Rehabilitation International (RI) is a network of organizations and individuals whose aim is to implement and improve disability rights worldwide. Here you can find out what initiatives are being taken for disability rights on a global level. This website also sponsors publications on advocacy and childhood disability.\

    Where to Start:
    Selecting the Publications and Media tab at the top directs you to brief overviews of each newsletter and magazine and offers links to current and back issues that you can download.

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  • Safe Transfer Technique

    Transferring in and out of a wheelchair puts higher stress on arms and shoulders than anything else one may do on a regular basis. Learning the correct way to transfer is extremely important in order to keep  arms functioning and pain-free.

    Where to Start

    Scroll down to the Safe Transfer Rules and Technique to find important tips and information on transfering

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  • Skin Care and Pressure Sores in Spinal Cord Injury

    A pressure sore is an area of the skin or underlying tissue (muscle, bone) that is damaged due to loss of blood flow to the area. They are the most common and sometimes life-threating medical complication of spinal cord injury.

    Where to Start

    Begin by scrolling through the MSKTC six-part series, which cover over topics such as Causes and Risks, Prevention, and Building Skin Tolerance.

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  • Social Security Administration

    This website covers Social Security issues specific to disabled individuals. Here you can get information on applying for benefits and finding employment. There are also extensive lists of links to pages that answer questions about how Social Security works and how it applies to your situation.

    Where to Start:
    Select the Benefits Planner tab on the left. Then, chose the situation that best fits you, such as, When you become disabled. This will lead you to a page specifically geared toward acquiring the related benefits.

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  • Spinal Cord InjuryRecovery.org

    Spinal Cord Injury-Recovery.org was created to share basic information on spinal cord injuries.  While this website is non-professional, it is a great guide for individuals looking for a straightforward resource on spinal cord injury facts, therapies and research.  

    Where to Start:

    Scroll through the top tool bar to find the information you are looking for.  Click on Spinal Cord Injuries to find  in-depth pictures of the spinal cord and how it works.  

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  • The Wheelchair Series: What the Spinal Cord Injury Consumer Needs to Know

    The wheelchair is a complex piece of equipment that has been extensively engineered and studied. Most individuals with SCI become wheelchair experts because doing so increases their chances of getting a wheelchair that truly meets their needs. So, it is critical to get help.

    Where to Start

    The MSKTC factsheet says while it is not possible to teach you all there is to know in a single handout, the topics on Getting the Right Wheelchair, The Manual Wheelchair and The Power Wheelchair include some of the most important information.

     

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  • United Nations Enable

    This organization focuses on advocating for the "rights and dignity of persons with disabilities" on an international level. Here you'll find updates on the latest international legislation and statistics regarding disability. This is an excellent source for fact sheets on the worldwide disability community and publications on regulations and advancements in disability rights.

    Where to Start:
    The Resources page, accessed through the tab at the top, provides a good introduction to worldwide disability demographic figures and legislative advancements. Most useful are the Fact Sheets, found in the menu to the right, which offer a brief overview of facts and information.

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  • United Spinal Association Publications

    This webpage offers publications that are available for free download covering a variety of topics related to spinal cord injury, including disability etiquette, mobility options and advocacy.

    Where to Start:
    Begin by clicking on Free Downloads to sign up for unlimited free publications.

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  • United States Access Board

    The Access Board is an independent federal agency devoted to accessibility for people with disabilities. Created in 1973 to ensure access to federally funded facilities, the Board is now a leading source of information on accessible design. The Board develops and maintains design criteria for buildings, transit vehicles, telecommunications equipment, and for electronic and information technology. It also provides technical assistance and training on those requirements and on accessible design and continues to enforce accessibility standards for federally-funded facilities.

    Where to Start:
    The Publications tab at the top of the page takes you to a list of useful resources that will help you get acquainted with some of the important disability-rights laws. Under the General section, select About the ABA and Other Disability Rights Laws. This page offers a quick reference and a basic introduction to accessibility regulations.

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  • Wyngs - Rebuilding Live after Spinal Cord Injury

    WYNGS is an all-volunteer program that offers the AIMS Program (Awards in Motion to Succeed), which funded by donors that aim to help paralyzed individuals with their immediate quality-of-life needs.  WYNGS also offers Peer Counseling and sponsors English and Spanish Support Group Meetings in California.

    Where to Start:

    If you are from CA, start by selecting Support Groups to find information in your area.  If you are from out of state, be sure to check out the Resources section, located in the main toolbar.

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  • Yellow Pages for Kids with Disabilities

    The Yellow Pages for Kids with Disabilities is database of professional contacts for people looking for support or information on any type of childhood disability. Search by state for resources on your child's disability on topics such as legal advice, healthcare and educational resources, government aid, doctors and specialists.

    Where to Start:
    Click you location under Select a State. This will lead you to a list of professionals, programs and resources in your state.

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