The long-term costs of living with a spinal cord injury are significant. Every family situation is unique. For many individuals, protecting current assets and managing daily costs of living are primary financial concerns.
Explore the resources below to develop a financial plan that supports ongoing needs for health and well being. These can range from learning how to qualify and apply for Supplemental Security Income (SSI) and Social Security Disability Income (SSDI). Learn how to continue employment and acquire added income without sacrificing medical benefits.
Other entitlement programs for individuals with disabilities, such as programs through departments of aging and disability or state waivers for spinal cord injury can help pay bills or subsidize costs for medical equipment and supplies, personal care attendants, home modifications, adaptive vans, adaptive recreation equipment, emergency response systems, and other environmental adaptations. For veterans, there are additional sources to support ongoing care as well as to continue educational pursuits.
Private foundations are another source of financial support for persons living with spinal cord injury. Special needs grants are available which support costs for assistive technology, adaptive recreational equipment and other non-medical needs. Other local, state and federal programs that support quality of life and daily living for persons with disabilities are available.
Parents of children and adults with spinal cord injury may also find it helpful to learn about Special Needs Trusts to ensure that financial needs will continue to be safeguarded throughout one’s lifetime. Privately funded non-profit charity programs for veterans, such as Salute, Inc. or the Wounded Warrior Program provided added sources of financial support for housing, employment, education, and mental health.
The ABLE National Resource Center provides services to help individuals with disabilities and their families setup ABLE Accounts, which are tax-advantaged savings accounts for individuals with disabilities and their families. Savings can be used towards qualified disability expenses means such as housing, transportation, employment training and support, assistive technology, personal support services, health care expenses, financial management and administrative services and other expenses which help improve health, independence and quality of life.
Blood Brothers Foundation provides financial support for vehicle modification for people living with physical disabilities. Here you can apply for adaptive devices such as hand controls, lifts, steering devices and ramps.
Vehicle modifications provide transportation options for people with disabilities but can be very expensive. This can be especially difficult if you’re already budgeting for other medical expenses or necessary home modifications, in addition to car modifications. This guide offers resources on how to cover some or all of the cost of vehicle modifications.
Managed by the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP), this website is dedicated to providing in-depth online access to disability-related information. There are extensive resources on this site, including details on how to apply for disability benefits, find a federal government job, and other resources on disability laws, services, education, and healthcare.
Family Benefits Solutions, Inc. (FBS) is dedicated to protecting and supporting the well-being of families with special needs. FBS helps families to obtain an objective view of their personal situation, become more knowledgeable about available benefit programs, play an integral role in the application process and ensure future benefits are sustained. Family Benefits Solutions helps families to make long-term decisions during a journey that can be filled with uncertainty, difficult choices, emotional weariness and a feeling of “not knowing what is out there.” Their goal is to help families reach a more comfortable today and a peaceful tomorrow.
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.
Created through a partnership of federal agencies, this website is an excellent tool for finding and accessing the government programs designed to help you. The website offers the option to search for benefits according to category, state, or federal agency. Select Benefits at the top and decide how you would like to search for available benefits from the options under the tab. A good way to start is by selecting Start Benefit Finder to help you decide which benefits to look for.
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.
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.
Developed by the U.S. Department of Health and Human Services, this website offers extensive information and resources on long-term-care options. There is basic information about services, cost and planning as well as advice on securing long-term care for your loved one. These pages are also full of useful articles and tools, such as the Long-Term Care Savings Calculator. Scroll down to Find Services for additional resources that can be search nationally by state.
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.
This nonprofit consumer service organization works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs, and public policy initiatives. The website provides detailed information and resources on what benefits you’re entitled to and how to find them. It’s National Telephone Hotline connects you to trained volunteers and staff to help you understand Medicare benefits, find the right coverage, and understand how existing coverage works with Medicare. The hotline is also available to individuals with Spanish as their primary language.
This website describes the services provided by Medicare, which offers insurance for people over the age of 65 or individuals under 65 with certain disabilities. On the home page under Forms, Help, & Resources, you’ll find information on health & drug plans, links that offer comparisons of hospitals, nursing homes and home health care agencies, and access to tools that help you find suppliers of medical equipment & supplies, Medicare forms, and replacement or correction of your Medicare card.
For individuals who don’t have prescription drug coverage or the means to pay full price for necessary medication, this website offers solutions. The PPA provides resources and access to more than 475 public and private programs designed to help you find affordable medication. The PPA is sponsored by several American pharmaceutical companies and the American Academy of Family Physicians, Easter Seals and the Urban League.
Ramp Less Traveled provides scholarships and mentoring opportunities to assist those who have sustained spinal cord injuries in the pursuit of higher education. They pair scholarship recipients with experienced mentors who help guide students and their parents along the path to college success. The mentoring relationship is comprehensive and ongoing, and Ramp Less Traveled does their best to ensure a successful and rewarding college entrance following injury.
The transition to civilian life is often difficult, especially where there is injury. SALUTE delivers short term financial assistance to bridge the temporary income gaps and meet the basic needs of post 9/11 veterans. The Get Assistance tab will help you learn more about financial assistance eligibility. Submit a Financial Assistance Application or call direct with any questions you may have at 847.359.8811.
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.
This website covers Social Security issues specific to disabled individuals. Here you can get information on applying for benefits along with extensive lists of links to pages that answer questions about how Social security works and how it applies to your situation.
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.
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 Disability 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.
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.
“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.
The Americans with Disabilities Act of 1990 (ADA) makes it unlawful to discriminate in employment against a qualified individual with a disability. It also outlaws discrimination against individuals with disabilities in State and local government services, public accommodations, transportation and telecommunications. This factsheet explains the part of the ADA that prohibits job discrimination, which is enforced by the U.S. Equal Employment Opportunity Commission and State and local civil rights enforcement agencies that work with the Commission.
The Travis Roy Foundation is dedicated to enhancing the life of individuals with spinal cord injuries and their families. The foundation provides grants to purchase adaptive equipment and funds research to discover therapies and methods for treating spinal cord injuries.
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).
Will2Walk Foundation is an organization that promotes staying active, fit and independent after a spinal cord injury. Through their scholarship program, they provide funding for items and services such as fitness memberships, team dues, everyday living supplies, work related equipment, educational expenses or participation in a special event related to spinal cord injuries.
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.
The Wounded Warrior Project (WWP) began when several veterans and friends, moved by stories of the first wounded service members returning home from Afghanistan and Iraq, took action to help others in need. What started as a program to provide comfort items to wounded service members has grown into a complete rehabilitative effort to assist warriors as they recover and transition back to civilian life. If you are a veteran injured after 9/11/01, select Programs. Here you can learn about WWP’s programs, which are uniquely structured and designed to nurture the mind and body, and encourage economic empowerment and engagement.