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Quick Start Guide

These websites are good places to begin to learn about the core basics of spinal cord injuries. The Quick Start Guide constitutes an introduction to key topics of 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.

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.

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.

 

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.

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.

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 reentering the job market and pursing an active lifestyle. Additional information on the ADA can be located at: www.ada.gov.

WANT TO READ MORE ABOUT THE ADA?

Unlocking the Mysteries of the ADA

Discriminatory ADA Education and Reform Act Blocked by Senate Democrats

 

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.

The ASIA Impairment scale is another helpful guide to understanding an injury, It was developed by doctors at the American Spinal Injury Association (ASIA) to categorize the extent of an injury in terms of the degree of damage to the spinal cord.

If the injury is “complete,” (ASIA A) it means that no messages can travel across the location of the injury to the brain. However, “incomplete” injuries, which mean that some messages can still get through, are classified as ASIA B, ASIA C or ASIA D, depending on amount of movement and feeling that remain below the level of the injury.

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.

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.

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.

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.

 

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.

 

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.

Driving following an Injury or Disability

For many people, being able to drive provides a sense of independence and freedom. This consumer education sheet from the Rehabilitation Institute of Chicago will help you and your family understand how a disability or injury can affect driving and the process for participating in a driver’s rehabilitation program.

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.

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.

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.

 

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.

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.

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.

LIFE Center – Shirley Ryan AbilityLab

The LIFE (learning, innovation, family, empowerment) Center at the Shirley Ryan AbilityLab 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 families 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 technology providers are also provided.

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.

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.

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. 

My HealtheVet

My HealtheVet was designed to help Veterans manage their healthcare needs. Veterans can refill VA prescriptions, keep track of their VA medical appointments and access their personal health records. There are also useful tools and resources designed to enrich each Veteran’s treatment experience and help them make informed decisions.

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.

 

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. 

 

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.

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.

Shepherd Center

Shepherd Center is one of the top rehabilitation hospitals in the nation, specializing in medical treatment, research and rehabilitation for people with spinal cord injury or brain injury. Their spinal cord injury resource website, MyShepherdConnection.org, is a great starting point for individuals and families looking for information on topics ranging from Coping and Adjustment, to Bladder and Bowel Care, to Transfers and Wheelchair Positioning

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.

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.

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.
 

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.

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.

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.

 

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.

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.

 

Spinal Cord Injury: The First 90 Days, Sam Maddox (2018)

“Spinal Cord Injury: The First 90 Days,” by Sam Maddox, is a free guide to acute SCI. There are two editions, one for the ten-county, 23 million population Southern California area, and one for the eight-state Rocky Mountain region. The book explains insurance coverage, rehabilitation best practices, self-care and coping strategies, expected outcomes, assistive technology and equipment, home modification and the steps needed to return to the community. It also offers an overview of legal rights and legal options in the event an injury may have been caused by someone else. 

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.

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.

 

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.

 

Veterans Health Library

The Veterans Health Library offers Veterans, family members, and caregivers 24/7 access to comprehensive, Veteran-focused health information. The Library is a one-stop source for health information to help Veterans stay well and well-informed. There are over 1,500 health sheets, over 150 videos, Go-to-Guides, and Flipbooks that have been approved by VA experts, and including spinal cord injury. All health information is available to Veterans, their family and the public, no matter where the Veteran receives care.

 

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.

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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