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These websites are good places to begin to learn about the core basics of spinal cord injuries. The Short List constitutes an introduction to spinal cord information, institutions and the disability community.

  • Accessible Cars, Vans, Rental Vans, and Van Lift Vendors

    The vendors listed on this consumer education sheet sell, rent and adapt new and used vehicles for people with disabilities. Many are nation-wide providers. 

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  • Adapting a Home for Wheelchair Accessibility

    There are several ways to create a more accessible space for a person who uses a wheelchair. Some options include: altering an existing floor plan, building an addition, coverting existing rooms, or buying a new home. The following guidelines are provided by the Rehabilitation Institute of Chicago to assist in planning for wheelchair accessible housing. Dimensions and tips are provided for entrances and exits, doorways, door handles, thresholds, hallways, floors, outlets and switches, telephones, furniture, bathroom toilet, sink, bathtub, roll-in shower, kitchen turning radius, countertops, refrigerator, sink, sotrage, stove, microwave, washer and dryer, bedroom bed, closet, and dresser. Figures are based upon ADA Guidelines for Buildings and Facilities.

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  • Adaptive Driving Alliance

    The Adaptive Driving Alliance is a nationwide group of vehicle-modification dealers who provide adaptive equipment for disabled drivers and passengers. This website provides a database of dealers who meet the Quality Assurance standards for business practices and equipment as defined by the National Mobility Equipment Dealers Association.

     

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  • American Academy of Physical Medicine and Rehabilitation

    AAPRM&R is the primary medical society for the specialty of Physical Medicine and Rehabilitation (rehabilitation physicians). It provides information on medical issues and best practices and continuing education and training. Here you can find a basic definition of what a physiatrist does as well as where to find one in your area. Click on "About Physiatry" to Find a PM&R Physician  in your area and their contact information.

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  • American Medical Association Doctor Finder

    The American Medical Association has compiled an online index of virtually every licensed physician in the U.S. Using this tool, you can search for specialty doctors in your area. The website lists first the doctors who are AMA members, though non-members can also be found. Each listing includes information on the location of the doctor's office and, in some cases, accepted insurance providers, educational history and specialty certifications.

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  • Americans with Disabilities Act (ADA): Summary of Key Points

    This consumer education sheet summarizes key points of the Americans with Disabilities Act (ADA). This legislation made it a violation of federal law to discriminate against people with disabilities, just as civil rights laws protect people against discrimination on the basis of race, gender, national origin, and religion. The ADA is divided into four main sections, called "Titles": 1. Employment, 2. State & Local Government, Transportation, and Public Service, 3. Public Accommodations, and 4. Telecommunications.  Knowing your rights in each of these four areas can assist you in rentering the job market and pursing an active lifestyle. Additional information on the ADA can be located at www.dol.gov.

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  • ASIA Impairment Scale

    The ASIA impairment scale classifies motor and sensory impairment that results from a Spinal Cord Injury.  It divides spinal cord injuries into 5 categories, A-E, with optional clinical syndromes.

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  • Autonomic Dysreflexia Wallet Card - Christopher and Dana Reeve Foundation

    It is important to become knowledgeable about Autonomic Dysreflexia (AD) if you have a spinal cord injury at the T6 level or above. AD can cause a medical emergency and even be life threatening. This emergency wallet card provides crucial information regarding Autonomic Dysreflexia for spinal cord injury survivors, their family, and emergency response professionals. There are two versions; an adult card in dark blue and a pediatric card in light blue -- please note the difference in the medication dosages.

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  • Back in Life: Moving on after a Spinal Cord Injury - Zack Weinstein (2006)

    Zack Weinstein was canoeing with a group of friends down the Saco River, in Maine. While jumping into a shallow part of the river, Zack broke his neck. At nineteen-years-old he became a C5-C6 Quadriplegic. In service to others facing life-altering injuries, the short film Back in Life was created. By sharing Zack's powerful experiences, the film may provide others with needed strength in an oftentime daunting situation.

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  • Being Your Own Advocate: Living with a Disability or Chronic Illness

    Learning to advocate for yourself or loved one is an important step in coping with a disability or chronic illness. This consumer education sheet from the Rehabilitation Institute of Chicago provides some basic tips to help you and others gain a sense of empowerment.

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  • CareCure Community

    Choose from over 70 forums in which hundreds of users are able to interact, share pictures, and post comments. Questions can be posed to an experienced spinal cord injury  nurse who will post back and forth with you helping you find answers and define questions you can ask your doctor. You can also follow what's new in research as well as read articles by research professor and founding director of the W.M. Keck Center for Collaborative Neuroscience Dr. Wise Young who answers questions and posts on topics surrounding disability. The Spinal Cord Injury Community Forums can be a place to find answers to questions, inspirational stories, and empathy. Follow the threads to view questions and answers from others in your situation, post your own concerns, and receive feedback.

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  • Caring Road Support Network

    Identifying itself as "the online community of family caregivers," this website offers free resources designed to help you as a caregiver both in meeting challenges and in caring for yourself. Resources include a support network to connect you to caregivers in similar situations, as well as articles with medical, legal, financial and personal care tips and suggestions. Click on Caregiving Tips and select Getting Organized for tools on setting up a basic caregiving plan, checklists, information sheets, and even a suggested daily schedule.

     

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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. The Foundation's Paralysis Resource Center provides a robust collection of resources that span key areas of life. Scroll down to obtain a FREE 442 page Paralysis Resource Guide in hard copy or electronic format, Wallet Cards on autonomic dysreflexia, deep vein thrombosis, and sepsis. The Resource Center also provides a Peer Mentor program to support life-long learning. Persons interested in connecting with someone to answer questions directly via phone or email can do so through the "Ask Us Anything" link.

     

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  • Create Your Own Personal Health Record

    An important step in advocating for your loved one includes organizing information that supports daily care. A personal health record is a tool that enables consumers to manage health information so they can communicate more effectively and easily with health care providers. This consumer education sheet provides a basic template to help you begin the process of creating a personal health record. Additional links to other commercially available products to help track information are provided as well.

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  • Depression and Spinal Cord Injury

    Depression can affect anyone. In fact, approximately 1 in 20 Americans (over 11 million people) get depressed every year. Depression is not an inevitable part of living with SCI though many in the SCI population - about one in five people - may experience this. This consumer education sheet describes depression, its causes, symptoms, and treatment. A depression self-test is also included to help one understand the extent of their depression and potential concern to get help.  This education sheet can also be downloaded in Spanish.

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  • "Disability Parking Publications and Forms" - Illinois

    This website from the Illinois Secretary of State Office lists several publications and forms for persons with disabilities who live in Illinois: Application for Illinois Disabled Person Identification Card, Application for a replacement parking placard, Parking program for persons with disabilities, Certification for disability license plate, Certification for parking placard, and What you should know about Accessible Parking. If you do not live in the state of Illinois, check your state specific Secretary of State Office or Department of Transportation website to identify similar information.

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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. This consumer education sheet identifies sources of support that may help to overcome many barriers that are outside the individual’s control, such as financial and health care issues, accessibility, and employer attitudes. 

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  • Five Wishes: Living Will Online

    Five Wishes is an online living will document provided by a non-for-profit organization called Aging with Dignity. It allows individuals to put their end-of-life wishes in their own words, rather than require state-written documents. Five Wishes is an easy-to-use document that helps express how you want to be treated if you are unable to speak for yourself. It is unique among all other living will and health agent forms because it speaks to all needs: medical, personal, emotional, and spiritual. It also helps structure discussions with your family and physician. Often called the "living will with a heart and soul," the Five Wishes document is the most widely used advance directive or living will in America. Click on the Preview box to review details of Five Wishes.

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  • Guide for Parents: Educational Accommodation-Descriptions and Comparison of Section 504 and IDEA (IEP)

    By law, students with disabilities are entitled to appropriate accommodations and modifications to assist in achieving and maintaining educational success. This resource, from the Rehabilitation Institute of Chicago LIFE Center, provides detailed descriptions of the 504 Plan and Individual Education Plan (IEP) so you can become informed and prepared to work with your child's or own education team to create an optimal learning experience.

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  • HEALTH Resource Center at the National Youth Transition Center

    The HEALTH Resource Center is a national clearinghouse of educational resources for individuals with disabilities. Managed by the George Washington University Graduate School of Education and Human Development. Explore the Center's Resources and Publications for information and advice about making decisions and overall preparation for entering college with a disability. Frequently Asked Questions can also assist parents whose children are making this transition.

     

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  • HelpHOPELive

    HelpHOPELive is a 501(c)(3) nonprofit that helps patients and families facing transplantation or catastrophic injury develop personal fundraising campaigns to support their ability to pay for uninsured medically related expenses. They provide the consultation needed to learn how to raise funds to bridge the gap between what health insurance will pay and what is actually needed to heal, live and thrive. Click on How it Works to find out about how to start a catastrophic injury campaign for fundraising.

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  • Hiring a Caregiver

    It is natural to be worried and overwhelmed when needing to hire someone for help with personal care. This consumer education sheet from the Rehabilitation Institute of Chicago LIFE Center, can help you better understand how to start, what to ask, and how to know if someone will provide what is needed.  Pros and cons for using a home health care agency, employment agency, or hiring a caregiver on your own are outlined along with caregiver interviewing tips.

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  • Learn About Clinical Studies

    A variety of consumer education sheets were developed by the U.S. National Institutes of Health to help people better understand clinical studies. Descriptions are provided on clinical trials and observation studies, who and where clinical studies are conducted, how long studies last, reasons for conducting them and who and how one participates in a clinical study.

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  • LIFE Center - Rehabilitation Institute of Chicago

    The LIFE (learning, innovation, family, empowerment) Center at the Rehabilitation Institute of Chicago is a premier family and professional resource center designed to support the life-long needs of people with disabilities, their families, and the community. The LIFE Center's extensive consumer education and community resources, spans over 7,000 peer reviewed sources of help centered on key life needs for familes and individuals living with a spinal cord injury. The online collection includes local, regional, national, and international agencies and extensive consumer education sheets. Topics include medical information and care, caregiving and equipment, housing and transportation, education and employment, support and wellness, recreation and leisure, finance and law, and inspiration and hope. Links to support groups, government disability programs, home care, medical equipment, and other assistive techology providers are also provided. Click on the Patient and Family Education pages icon to explore consumer education sheets specific to spinal cord injury.

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  • "Life on Wheels: The A to Z Guide to Living Fully with Mobility Issues" (Demos Medical Publishing, 2009)

    Disability awareness author and speaker Gary Karp provides a comprehensive guidebook for people with mobility disabilities - Life on Wheels. It's written in an affirming tone that helps people pursue their true, full potential. Candid discussions and tips regarding rehabilitation, healthy disability, the experience of disability, wheelchair selection, intimacy and sex, spinal cord research, home access, and getting out their are presented in an easy to understand way with good humor and useful insight.

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  • Living Wills and Powers of Attorney for Health Care: An Overview

    Taking time to outline your interests regarding the type of treatment you would like or would not like, along with identifying someone whom you trust to oversee your care will help ensure that your wishes are attended to in the event you are not able to communicate for yourself.  This consumer education sheet is provided by Nolo.com; one of the Internet's leading legal websites. This overview describes what's involved and why it is important to prepare Living Wills and Powers of Attorney for Health Care, who can make the health care documents, when it takes effect and when it ends, and how the documents can be revoked. This website provides additional information on a variety of aspects of advanced care planning to ensure your wishes are directed according to your desires.

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  • Lotsa Helping Hands

    Now when someone asks, "What can I do?" there's an easily accessible answer. Through this website, you can develop a community of people to help care for a loved one. Users create a personal website and invite others to join and stay updated on the needs of the individual requires help. Within the site is a calendar that keeps track of tasks that need to be done. Each member is able to sign up for different jobs, so caregiving responsibilities are shared and addressed within the group. Scroll through How it Works to better understand the details of this easy to use application.

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  • Middle School and High School Transition Planning

    Parents of youth with disabilities should begin thinking about transition (planning for adulthood) as early as possible. Although the formal process of transition planning doesn't begin until high school, it is helpful to begin thinking about it much sooner. PACER's National Parent Center on Transition and Employment provides various consumer education sheets to assist with this process, including information on Individuals with Disabilities Education Act (IDEA) and Individualized Education Progorams (IEPs), College Planning, and Preparing for Employment.

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  • Model Systems Knowledge Translation Center

    The Model Systems Knowledge Translation Center (MSKTC) summarizes research, identifies health information needs and develops systems for sharing information for the National Institute on Disability Rehabilitation Research (NIDRR) model systems programs in traumatic brain injury, spinal cord injury, and burn injury. The Spinal Cord Injury tab at the top takes you to a page with a listing of what the website has to offer, including a factsheets, slideshows, and hot topic modules as well as quick reviews of research that is funded by the NIDRR, and a database of research publications from the Model Spinal Cord Injury Systems since 1991. 

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  • National Mobility Equipment Dealers Association

    This website was developed by the National Mobility Equipment Dealers Association. It offers useful information on available adaptive vehicles, adaptive features, such as hand controls as well as funding options for purchasing vehicles. You also can find a local dealer, learn about the nationally recognized accreditation program for dealers, called the "Quality Assurance Program," and find manufacturers that offer rebates and discounts.

     

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  • National Rehabilitation Information Center

    The National Rehabilitation Information Center (NARIC) is the library of of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). This extensive collection includes all articles, reports, curricula, guides, and other publications and products of the research projects funded by NIDILLRR. Disability Resources are additionally arranged by subject to help patrons find agencies, organizations, and online resources for treatment, benefits, and services. 

     

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  • PACER Center: Champions for Children with Disabilities

    PACER Center is a parent training and information center for families of children and youth with all disabilities from birth to young adults. Located in Minneapolis, it serves families across the nation, as well as those in Minnesota. Parents can find publications, workshops, and other resources to help make decisions about education, vocational training, employment, and other services for their children with disabilities. PACER's YouTube Channel offers many helpful vidos on a variety of subjects, including assistive technology, speical education, and bullying prevention.

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  • PACER's National Parent Center on Transition and Employment

    PACER's National Parent Center on Transition and Employment provides quality information and resources for families of young adults with disabilities on transition planning, civil rights, work-based learning, career accommodations, higher education, financial aid, and much more. It serves as a comprehensive source of information designed to support families' varied needs.

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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. 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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  • 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.

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  • Ralph’s Riders Foundation

    Ralph‘s Riders Foundation is a 501(c)(3) nonprofit dedicated to enabling people living with spinal cord injury and paralysis to achieve their highest level of independence, health and personal fulfillment by providing peer guidance, resource information and a supporting network within the community. Riders are a team of extraordinary people living with spinal cord injury and paralysis that provide peer guidance to people with similar disabilities. Riders give a unique perspective on life as well as an ability to set a great example for newly injured individuals. This group also provides a Career Coaching Program to help establish professional goals, make career decisions, created and execute plans, and overcome obstacles that may come in their way.

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  • Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)

    RESNA promotes research and advocacy for assistive technology through membership and programs focused on the exchange of ideas and information about technological advancements for individuals with disabilities. The Consumer and Public Information section of this professional websites provides a catalogue of state programs designed to assist you as well as conferences and assistive technology news. Some of the most useful tools on this website are the lists of state programs which can help you find financial help for assistive technology.

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  • Rocky Mountain Regional Spinal Injury System - Craig Hospital, Englewood, CO

    Craig Hospital in Englewood, CO offers state-of-the-art facilities and expert staff for the care of spinal cord injuries. Free on-campus housing units are offered to family members to encourage family support. The large number of patients with similar ages, backgrounds and injuries promotes hope through friendships and peer counseling. Click on Education & resources at the top toolbar to access interactive library resources on spinal cord injury.

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  • Shriners Hospital Pediatric Spinal Cord Rehabilitation Programs

    Shriners Hospitals for Children is a health care system of 22 hospitals dedicated to improving the lives of children by providing specialty pediatric care, innovative research and teaching programs. Children up to the age of 18 with orthopedic conditions, burns, spinal cord injuries and cleft lip and palate are eligible for admission and receive all care in a family-centered environment with no financial obligation to patients or families. Three locations specialize in pediatric spinal cord injury medicine and rehabilitation; they are located in Sacramento, Ca, Chicago, IL and Philadelphia, PA. Transportation is also provided at no cost.

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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. This consumer education sheet comes from the Model Systems Knowledge Translation Center and is part of a six-part series on skin care which can be explored on the right side of this page. Topics include Causes and Risks, Prevention, and Building Skin Tolerance.

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  • Social Security Disability Benefit Overview

    This consumer education sheet provides a general overview of social security disability benefits, the eligibility requirements, application process, medicare benefit availability, appeal process, and reasons why benefits could be terminated.

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  • "Social Security-Benefits for Children with Disabilties" (Social Security Administration, 2016)

    This booklet, from the Social Security Administration, is for the parents, caregivers, or representatives of children younger than age 18 who have disabilities that might make them eligible for Supplemental Security Income (SSI) payments. It is also for adults who became disabled in childhood (prior to 22), and who might be entitled to Social Security Disabiltiy Insurance (SSDI) benefits. (We call this SSDI benefits a "child's" benefit because it's paid on a parent's Social Security earnings record.) This booklet will help you decide if your child, or a child you know, might b eligible for SSI or Social Security.

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  • Special Needs Answers

    The purpose of this site, sponsored by the Academy of Special Needs Planners, is to provide a general overview of strategies parents and others can use to plan for their own futures and for those of family members with special needs. Topics include information on Estate Planning, Special Needs Trusts, Financial Planning, SSI and SSDI, Settlement Planning, Public Beneifits, and Disability Issues.  This site also provides a directory of Special Needs Planners by state.
     

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  • "Special Needs Trusts: Protect Your Child's Financial Future - 5th Edition" (Nolo, 2013)

    If you care for a child or other loved one with a disability, you've no doubt thought about what will happen when you're no longer able to give that care. Special Needs Trust shows you how to leave any amount of money to your disabled loved one without jeopardizing government benefits.

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  • Spinal Cord Injuries: Areas of Research - Topic Overview

    This section of WebMD provides an overview of several types of research on spinal cord injuries. Some of them may be at the point where people with SCI's are using them on a trial basis. Others might still be in the animal-study stage. They all have the potential to lead to a return of some feeling and movement in paralyzed areas.

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  • Spinal Cord Injury Model System Information Network - University of Alabama

    The University of Alabama at Birmingham Spinal Cord Injury Model System maintains an extensive information network of spinal cord specific resources. The fact sheets offer quick references to basic spinal cord injury health information. Daily Living topics provide consumer education on Adjustment, Assistive Technology, Caregiving, Family & Relationships, Health Management, Home Modification, Leisure, Mobility, Nutrition, Sexuality, School, and Work. Additional Rehab Tip Sheets provide information on common activities, such as wheelchair positioning, assisted pressure relief, lift transfers, assisted transfers and bed positioning. SCI Health Education Videos are also available for a vairey of secondary conditions.

     

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  • Spinal Cord Injury Nurse Advice Line

    The Spinal Cord Injury Nurse Advice Line is a phone service provided by the outpatient clinic at Craig Hospital, a Model Systems Hospital for people with spinal cord injury. This service provides a dedicated nurse to answer non-emergent calls Monday-Friday between the hours of 9 a.m. – 4 p.m. Nurses at Craig Hospital have the experience to help identify potential complications before they become serious health issues. Two common health concerns are neurogenic bowel or bladder problems and skin issues, both of which can cause major health problems for people living with Spinal Cord Injury if not caught early. In addition to answering health-related questions, callers can obtain educational resources unique for healthy living with this injury.

    If you have questions regarding the three following areas, call 800-247-0257 or 303-789-8508 Monday-Friday from 9am to 4pm (MST).

    1. A non-emergent medical question arises that does not warrant a trip to the doctor’s office, yet needs answered.

    2. Experiencing changes in care and wondering whether it is “normal?”

    3. A new caregiver arrives and needs education materials to help in the transition.

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  • Spinal Cord Injury Zone

    Calling itself a "knowledge base," the Spinal Cord Injury Zone provides news and information on Spinal Cord Injury-related issues. Here you'll find facts and answers to common questions about Spinal Cord Injury, medical issues and daily life. The videos offered are good educational and inspirational tools. The mission of The Spinal Cord Injury Zone is to archive important Spinal Cord Injury News and Spinal Cord Injury Information for education and awareness.

     

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  • SPINALpedia

    SPINALpedia is a video sharing mentor network for people with paralysis from spinal cord injury or illness and their family and friends.The experts of life with paralysis are the people who live it every day, injured or not. With an incredible diversity of experiences and challenges for a variety of people and injuries, the process of adaptation is daunting and complicated. With SPINALpedia, we give people the opportunity to share their experiences and learn from others, meeting a diversity of needs and creating a dynamic, sustainable community grounded in our common desire to overcome the challenges of paralysis.

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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. Becoming a wheelchair expert increases your ability to get a wheelchair that truly meets your needs. While it is not possible or a single handout to teach all there is to know, topics covered by the Model Systems Knowledge Translation Center on Getting the Right Wheelchair, The Manual Wheelchair and The Power Wheelchair include key information that can support your ongoing development of wheelchair knowledge.

     

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  • United Spinal Association

    Each year, United Spinal helps thousands of individuals living with spinal cord injuries or disorders overcome the daily challenges of living with a disability. With over 60 local chapters and suport groups nationwide, United Spinal Association connects people  with SCI/D to their peers and fosters an expansive grassroots network that enriches lives.  Free webinars are provided on a regular basis to help individuals and their families stay informed and connected to helpful resource information. The resource library offers useful links to services, articles and studies. Click on Chapters at the top toolbar to locate your state association.

     

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  • Working and SSDI Benefits

    This consumer education article details the requirements for how much you can work and still maintain SSDI (Social Security Disability Income) benefits. The article also provides additional consumer education sheets on working and eligibility for Social Security Disability.

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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. Click you location under Select a State. This will lead you to a list of professionals, programs and resources in your state. A specific listing of Nation-wide Parent Training and Information Centers and Community Parent Resource Centers is also provided on this website.

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