Explore the resources below to expand your knowledge and ability to navigate the complexities of caring for someone with a spinal cord injury.
Family caregiving involves an array of tasks. For many individuals, it is a new and unknown territory. The tasks can range from helping someone with daily care, providing support with household tasks, securing accessible transportation, helping to motivate and enable involvement in social activities, to advocating for ongoing medical care. It is not unusual for family caregivers to feel unsure of themselves, where to start, or who to turn to. At first, caregivers find themselves wondering, “What resources are available? How do I find support? What can I do to help my loved one and myself?”
There are agencies and tip sheets in this section that can help families living with spinal cord injuries develop an individualized caregiver plan. These include resources for finding a caregiver as well as for identifying medical services to support emerging needs, modifying a home for wheelchair accessibility, locating transportation resources and agencies to support adaptive driving, as well as identifying medical providers, groups, and agencies for emotional support and caregiver respite.
Also included are listings of statewide spinal cord injury associations and community groups that promote empowerment, independence, and peer support. Other disability resources to help adopt a positive approach to daily living are also included.
The AARP Caregiving Resource Center provides family caregivers with information, tools and resources to help them on their caregiving journey. The site also provides access to caregiving experts in various issue areas, who provide information through blogs, webinars and one-on-one interaction through social media channels. Family members and friends can find a supportive online community that offers a safe space to connect with others experiencing similar challenges as they care for a loved one.
This website was developed by an interdisciplinary team of researchers and practitioners with expertise in pediatric injury, child health care, and traumatic stress at the Center for Injury Research and Prevention at the Children’s Hospital of Philadelphia. Through cutting-edge research on the effects of injury on children and their parents, After The Injury was created for families looking to learn more on how to help their injured child respond in a healthy way.
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.
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.
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.
ARCH National Respite Network and Resource Center was founded to assist and promote the development of quality respite and crisis care programs; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums.
The ARCH National Respite Network includes the National Respite Locator, a service to help caregivers and professionals locate respite services in their community, the National Respite Coalition, a service that advocates for preserving and promoting respite in policy and programs at the national, state, and local levels, and the Lifespan Respite Technical Assistance Center, which is funded by the Administration for Community Living in the US Department of Health and Human Services.
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.
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.
BACKBONES exists to provide free support for people with spinal cord injury and their families. Through our network we facilitate telephone, in-person, or web-based connections and encourage growth by the sharing of experiences and ideas. As a host to events, BACKBONES creates an inviting atmosphere where people can ask questions, learn from each other informally, and make lasting friendships. Select “Connect” on the main toolbar to join the network or “Get Involved” to volunteer.
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.
Sponsored by Newsome Melton, LLP, BrainandSpinalCord.org is a resource to help brain and/or spinal cord injury survivors and their families learn more about medical conditions, rehabilitation, and legal options that can support long-term financial stability.
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.
The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for more than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN is a non-profit that serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease.
The American Psychological Association’s Family Caregiver Briefcase is a user-friendly, online resource to help psychologists and other health and social service professionals assist family caregivers through individual and organizational practice, research, teaching and community service. Family caregivers will also find useful information in the resources section of the briefcase.
CarePages provides a secure and free personal website or blog that helps connect friends and family during a health challenge. Through Carepages, you can provide up-to-date information on your loved one’s condition and let family and friends know how things are going without dozens of repetitive phone calls or email updates. CarePages also provides a variety of forum threads covering things like caregiving and emotional health. All are available online for you to read and contribute to, or start on your own, at your convenience.Click on theLearn tabon the top toolbar to view Stories of Inspiration, Tips, Resources, and Articles on living a healthy, compassionate life, managing money, comforting friends, and helping yourself eat and sleep well while under stress.
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.
No more repeating your story over and over. CaringBridge helps you save time with one update. You can create a personal website for yourself or a loved one during a critical illness or catastrophic event and have time to focus on what matters. This personal, protected website provides an everyday health journal that uses features such as a patient journal and photo gallery to update friends and family who can then show their support by posting messages in your online guestbook.
The Center for Parent Information & Resources 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. Scroll down the Resources page to view an array of information on K-12 issues for accommodations at school, career and college readiness, the IEP process, how to develop effective practices and enable parent advocacy. This website also identifies Parent Technical Assistance Centers (PTACs) by state.
Part of the College of Design at North Carolina State University, CUD strives to provide research, education and services related to accessible design across all environments including housing, buildings, and outdoors. Here you’ll find information on the most useful design solutions, as well as technical assistance in constructing accessibility improvements to your home. You’ll also learn about universal design, the core principle of which lies in constructing environments in a way that is accessible to all people without standing out as altered or customized for people with disabilities. From the menu on the left, selectPublications. This gives you a list of helpful fact sheets about universal design, construction, legal accessibility standards, and housing.
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.
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.
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.
This website was created by Jim Lubin, a man with transverse myelitis who is dependant on a ventilator. He uses a sip-and-puff device to enter Morse-Code patterns that translate to keyboard and mouse functions to operate his computer. Aside from the impressive personal story behind it, Lubin’s site offers an extensive catalogue of online resources on disability. Here you’ll find links to information on spinal cord injury, assistive technology, medical newsgroups, disability organizations etc.
It is common for individuals with spinal cord injuries to experience multiple nutritional deficiencies. Eating the right foods becomes even more crucial to meet your body’s increased nutrient needs fight after injury, during rehabilitation and throughout your life. Funded by the Paralyzed Veterans of America, Eat Well, Live Well with Spinal Cord Injury is a comprehensive, practical nutritional guide written specifically for individuals with spinal cord injuries, as well as their families, friends, caregivers, health and medical professionals.
The Family Caregiver Alliance offers comprehensive online tools for caregivers in all locations and situations, including those caring for a spinal cord injury. Users can listen and view Caregiver Webinars on a variety of subjects. Workshops, classes, and events 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.
The Family Resource Center on Disabilities (FRCD) was a pioneer as a coalition that covered all disabilities. FRCD was organized in 1969 by parents, professionals, and volunteers who sought to improve services for all children with disabilities, with efforts to educate and train parents, professionals, and volunteers. Click on Resources at the top toolbar to explore many sources of help for parents of children with disabilities.
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.
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.
The Florida Spinal Cord Injury Resource Center (FSCIRC), established in January 1994, serves as the statewide clearinghouse of spinal cord injury resource information for persons living with SCI, their families and friends, healthcare professionals, support groups, the media, and the general public. Click on Resources on the top toolbar to view A-Z Resources for spinal cord injury.
FODAC’s mission is to provide durable medical equipment (DME) such as wheelchairs and hospital beds at little or no cost to the disabled and their families. We seek to enhance the quality of life for people of all ages who have any type of illness or physical disability. Since 1986, FODAC has collected and distributed more than 25,000 wheelchairs and other durable equipment to create a better quality of life for adults and children. Services include durable medical equipment, home modifications, vehicle modifications, and assistive technology.
Got Transition/Center for Health Care Transition Improvement is a cooperative agreement between the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health. They aim to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.
The Greater Boston Chapter of the National Spinal Cord Injury Association is a 501 (c) (3) organization working to reach, inspire, support and empower individuals and their families affected by spinal cord injury and paralysis throughout Massachusetts. GBC provides access to resources, vital information, peer visitors, advocacy and educational information. From the moment of injury, GBC provides one-on-one services to the newly injured and those around them as they learn to cope with dramatic change and adjust to post-injury life. Although the GBC is based in Massachusetts, their website is a great resource for everyone. Their nationally recognized Peer Visitor and Mentor Program provides positive role models to those who are newly injured and their families.
The Greater Kansas City Spinal Cord Injury Association is a consortium of individuals with spinal cord impairment, health care professionals and service providers. They aim to be a resource for education, support, services local events. Peer discussion groups meet regularly to share resource information and ideas for adjustment and independence.
The Greater New York Chapter of the Spinal Cord Injury Association (NYCSCIA) is a non-profit 501(c)3 organization, whose mission is to help people rebuild their lives after spinal cord injury by providing resources, services and peer support to survivors and their families. The Chapter works to empower and promote independence for people with spinal cord injuries as they lead active, meaningful lives in their communities. Weekly support groups run throughout the year.
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.
HealthFinder.gov has resources on a wide range of health topics selected from over 1,600 government and non-profit organizations. This government website is designed to help you and those you care about stay healthy. Health Topics A to Z provides information on health conditions and diseases, nutrition and physical activity, doctor visits, everyday healthy living, pregnancy and parenting.
This website offers a simple tool which enables you to find and compare health plans. With online premium quotes, this is a good place to start researching your insurance options, whether you’re looking for plans for the long term, short term, or are in transition from one plan to another. At the very bottom of the home page is a set of links to help you look up information regarding health, dental, short term, life, travel, and Medicare insurance plans.
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.
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.
IN*SOURCE is a parent organization that provides support services and educational resources to Indiana families. Through the work of staff and many volunteers, virtually all of whom are parents of persons with disabilities, IN*SOURCE provides parents, families and service providers in Indiana the information and training necessary to assure effective educational programs and appropriate services for children and young adults with disabilities. IN*SOURCE also provides an array of resources to allow parents to quickly assist their children – regardless if the topic is bullying in school or how to transition their child from school into adult life.
Centers for Independent Living (CIL) are nonresidential disability advocacy agencies that support people with disabilities to live in the least restrictive community of their choice. This civil right, guaranteed through the Olmstead Decision, states that people with disabilities should receive public benefits and services in the most integrated setting appropriate to their needs. CIL agencies provide a variety of community-based services and peer support. Click on a state to locate an independent living center close to your home.
The Injury Board is a network of personal injury law firms located across the United States and the United Kingdom. A group of law firms from the Injury Board created a Help Center on spinal cord injuries to provide basic information on safety, initial steps in handling an injury, treatment and rehabilitation, caregiving advice, and legal issues. Each section offers a few paragraphs of insight, facts, figures and other helpful links.
Inspired Forum is an online spinal cord injury community that was designed to promote a positive outlook for those with Spinal Cord Injury. Members of the site are able to connect others to share experiences and support each other. Inspired Forum aims to make members feel comfortable and relaxed with a good degree of humor!Users must “Register” via the homepage to access this online community.
Founded in 1998, The International Center for Disability Resources on the Internet (ICDRI) is a non-profit center based in the United States and designated as a 501 (c)(3) entity. The ICDRI’s overarching vision is the equalization of opportunities for persons with disabilities. As an internationally recognized public policy center organized by and for people with disabilities, they seek to increase opportunities for people with disabilities by identifying barriers to participation in society, and promoting best practices and universal design for the global community. ICDRI services provide white papers, keynotes and training for conferences, government agencies, universities and private sector organizations. They are also frequently called upon to provide disability rights education and customized programs, and actively participant in public policy strategic planning and implementation for governments in the US and abroad.
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.
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.
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.
Long-term care encompasses everything from long-term services and supports and finances, to where you will live and how you will navigate the myriad of legal, family, and social dynamics along the way. LongTermCare.gov was developed by the U.S. Department of Health and Human Services to help individuals accurately plan for long-term care needs.
It answers questions about the nature of long-term care, who needs it, how much it costs (with a state-by state breakdown), how it can be paid for, who provides care within long-term care facilities, and details on Medicare and Medicaid coverage of long-term care. Not only does the site explain why everyone needs to plan for long-term care, but also it takes one through the step-by-step process.
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.
Mad Spaz Wheelchair Club promotes living life to the fullest. This website offers information on disability adventures, ranging from bungy jumping to fishing, gliding, and skydiving. Personal articles on disability humor, sex, love, and relationships, as well as resources for wheelchairs and equipment are also provided. Club members have additional access to Forums to exchange ideas and information.
This book was developed by leading Mayo Clinic experts, and covers a wide variety of spinal cord injury related topics such as emotional adjustments, sexuality, skin care, and adaptive equipment. The independence-granting book encourages readers to resume their favorite hobbies, participate in athletic activities, and return to the workplace quickly and safely.
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. The section on spinal cord injuries provides specific information on diagnosis, tests, prevention, and treatment as well as videos and tutorials, statistics and research, clinical trials, and journal articles.
In 1985, Barth A. Green, M.D. and NFL Hall of Fame linebacker Nick Buoniconti helped found The Miami Project to Cure Paralysis after Nick’s son, Marc, sustained a spinal cord injury during a college football game. Today, The Miami Project is a comprehensive spinal cord injury research center, housed in the Lois Pope LIFE Center, a Center of Excellence at the University of Miami Miller School of Medicine. The Miami Project’s international team of more than 200 scientists, researchers and clinicians take innovative approaches to the challenge of spinal cord injury. The website’s Living with Paralysis section provides provides exceptional consumer education on Spinal Cord Injury 101, Care and Resources,Experimental Treatments, Webinars, and Statistics. The Healthy Living section provides additional information on diet and nutrition, exercises, sports and leisure, and stretching.
The Michael Brent Resource Center at Frazier Rehabilitation Institute was established in 2010 to address the needs of individuals and their families from the onset of spinal cord impairment and continuing throughout the life cycle. Its mission is to provide a central location where educational books, DVD’s, CD’s, pamphlets and other educational materials are housed for inpatient, outpatients, families, staff, students and others to come and learn about spinal cord impairment. The Center also provides a location for inpatients, outpatients and those in the community to meet and network with the agencies that serve them.
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, Independent Living, and Rehabilitation Research (NIDILRR) 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 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.
Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. Family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance is dedicated to improving quality of life for families and their care recipients through research, innovation, and advocacy.
FamilyCare America, Inc. created this as a free online source of articles, forms, checklists and links directed toward helping educate and support caregivers in all situations. The Checklists and Forms section provides particularly useful aids in making informed decisions about housing, money, and health issues that apply to all caregivers.
The mission of the National Center is to work in cooperation with federal agencies, particularly the Maternal and Child Health Bureau (MCHB), to ensure that children with special needs have access to a medical home. The National Center provides support to physicians, families, and other medical and non-medical providers who care for children and youth with special needs. The Families and Caregivers page includes tools, resources, and links to information to assist families in successfully partnering with their child’s medical home professionals.
This group, formed as an outgrowth of work done by advocates working for Ralph Nader and the National Gray Panthers, provides information on federal and state regulatory and legislative policy geared toward improving long-term-care facilities. The Information Library offers resources on common issues for families and caregivers regarding long-term care including specialized information for consumers, family members, and advocates to support decisions in selecting a nursing home, getting quality care, understanding residents’ rights, and tips for family involvement.
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. The online Family Caregiver’s Guide to Care Coordination helps family identify ways to work together with professionals with tips on staying organized, especially when professional care ends.
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 videos on a variety of subjects, including assistive technology, special education, and bullying prevention.
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.
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.
Paws With a Cause enhances the independence and quality of life for people with disabilities across the national through custom-trained Assistance Dogs. In addition, PAWS increases awareness of the rights and roles of Assistance Dog Teams through education and advocacy. Learn more about assistance dogs, customized training, lifetime team support, and how to request an application for a PAWS dog by clicking on I WANT A DOG.
This consumer education sheet, developed through the Medical University of South Carolina’s Office of Research, discusses key points for finding, interviewing, educating, and training a personal care attendant (PCA). It also outlines top 10 reasons why PCAs quit their jobs with helpful hints for developing a positive working relationship.
Pushrim is a social network and support website for friends, family and people living with spinal cord injury. Members are encouraged to create a user profile page to blog and hold related conversations in Pushrim’s forum section. The website was created as a social and emotional outlet for people affected by spinal cord injury.
Here you can read the inspirational story of Canadian Rick Hansen, who has become a celebrated wheelchair athlete and developed a foundation dedicated to raising awareness and creating a more accessible environment for people with spinal cord injury. The Rick Hansen School Program teaches students about access, inclusion, and disability. In addition, the Rick Hansen Foundation helps improve accessibility and quality of life through a variety of community programs.
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.
The Rosalynn Carter Institute for Caregiving establishes local, state, national, and international partnerships committed to building quality, long-term, home and community-based services. RCI overall goal is to support caregivers – both family and professional – through efforts of advocacy, education, research, and service.
Caregiving is always challenging. However, for rural caregivers, the challenges are compounded by factors such as geographical isolation, gaps in rural service delivery systems, and the unique needs of agricultural workers with disabilities. Rural Caregivers is designed to help bridge the information gap and assist in creating a web support community for rural caregivers.
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. They believe that disabilities, illness, and mental health issues affect the lives of all family members. Youths 8-18 can find information and peer support in the project’s Sibshop programs, which connect youths coping with a sibling’s disability to community-based local programs. There are a variety of online groups to get help and support at all hours of the day for adult brothers and sisters, young adult sibs (18 to early 30’s) and for teen brothers and sisters.
The South Carolina Spinal Cord Injury Association helps South Carolinians with spinal cord injury live healthy, independent lives through providing specialized resources, advocacy, and peer support. While based in South Carolina, the website is a valuable resource for people with Spinal Cord Injury and their families. The Living Life to the Fullest section provides information on adapting to life after a Spinal Cord Injury and includes a resource library and links to various sources of help.
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 Benefits, and Disability Issues. This site also provides a directory of Special Needs Planners by state.
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.
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.
Physiatrist Dr. Michelle Alpert’s clinical experience with patients’ own stories, “Spinal Cord Injury and the Family” is for individuals and their families who must climb back from injury: for the young quad couple, both quadriplegic, who wish to conceive and raise a child; for the paraplegic dad who wants to teach his daughter to drive. Dr. Alpert is the Director of Rehabilitation Medicine, Hebrew Rehabilitation Center, and Clinical Instructor in Physical Medicine and Rehabilitation, Harvard Medical School. She was the founder and first director of the Spinal Cord Injury Program at Spaulding Rehabilitation Hospital.
Spinal Cord Injury Association of Illinois is a 501(c)3 non-profit organization providing information and support resources for people paralyzed by trauma and medical conditions, family members, and health care and related professionals that serve the Spinal Cord Injury community. This association’s events page identifies ways to participate in outings and fundraising events to support services for spinal cord injury.
The Spinal Cord Injury Association of Kentucky networks with state, federal, public, and private agencies to raise awareness of people with spinal cord injuries and advocate for their needs. Their mission of is to serve those affected by spinal cord injury through increased awareness, greater resource availability and support services, enhanced educational and preventative interventions, as well as increased athletic and recreational opportunities.
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 variety of secondary conditions.
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-emergency 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: a Guide for Living” is the definitive guide for people with a spinal cord injury and their families. Combining first-person accounts with up-to-date medical information, the book addresses all aspects of spinal cord injury – recovery and coping, sex and family matters, transportation and housing, employment and leisure – and reviews the challenges encountered by people with spinal cord injury throughout their lives.
This well-written, reliable overview of traumatic spinal cord injury and its treatment is essential reading for all patients, family members, and caregivers who want a better understanding of the condition. In simple, everyday English, it explains the anatomy of the spine, the results of injury, and treatment and management issues encountered during rehabilitation. A glossary of commonly used terms and website resources offer tools for further study, while the latest scientific research helps patients make informed medical decisions that promote optimum healing.
This is a private online forum whose members are all supporters and caregivers of individuals with spinal cord injury. Members create a support network to ask questions, find answers and empathize with each other
“Spinal Cord Injury: The First 90 Days,” by Sam Maddox, is a guide to acute SCI. It details the first hours, days and weeks after traumatic injury; it defines the injury and outlines basic medical care now and in the future. In easy-to-understand language, the book offers detail on the complex medical and psychological issues that define SCI. It is available three editions: Southern California, Rocky Mountain Region and Arizona.
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.
Support for Families of Children with Disabilities (SFCD) is a parent-run San Francisco-based nonprofit organization founded in 1982. They support families of children with any kind of disability or special health care need as they face challenges. The purpose of Support for Families is to ensure that families of children with any kind of disability or special health care need have the knowledge and support to make informed choices that enhance their children’s development and well being. Through fostering partnership among families, professionals and the community our children can flourish. Explore SFCD Services to identify support options.
Theravive is a network of licensed and professional counselors, therapists, and psychologists who uphold clear, compassionate values in therapy. Theravive’s purpose is to connect people with professionals, who specialize in every form of counseling. Explore Find a Therapist to identify potential support near you.
Through the Looking Glass (TLG) is a nationally recognized legal center that has pioneered research, training, and services for families in which a child, parent or grandparent has a disability or medical issue. Some issues include: parents with/DA and families in custody cases and parents with/DA in child welfare & civil rights implications. TLG is a disability community based nonprofit organization, which emerged from the independent living movement, and was founded in 1982 in Berkeley, California. Our mission is “To create, demonstrate and encourage non-pathological and empowering resources and model early intervention services for families with disability issues in parent or child which integrate expertise derived from personal disability experience and disability culture.”
Understanding Spinal Cord Injury is a video resource developed by the Shepherd Center, a Spinal Cord Injury Model Systems Rehabilitation Hospital. The videos cover important topics on recovery using simple language and feature people living with spinal cord injury, as well as medical experts and advocates.
The Department of Veterans Affairs has two benefit programs for caregivers: The Program of General Caregiver Support Services (eligible Veterans all eras) and the Program of Comprehensive Assistance for Family Caregivers (eligible post-9/11 Veterans). Each VA Medical Center has a Caregiver Support Coordinator available to assist with enrolling in these programs. For help, contact your local Caregiver Support Coordinator using the Caregiver Support Coordinator search tool, or call the VA Caregiver Support Line at 1-855-260-3274 (toll free 8 a.m. to 8 p.m. ET).
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.
This organization specifically serves the needs of spousal caregivers. Here you’ll find support groups, encouraging articles, mentoring from veteran caregivers and most of all, the message that you are not alone. Well Spouse Association unites a community of caregivers on and offline with forums and newsletters as well as meetings, conferences and respite weekends. If you are a caregiver for your spouse, this is an excellent resource.