Spinal cord injury affects almost 300,000 Americans. These injuries are never sustained by individuals who are fully aware of the challenges faced by the SCI community, but survivors become quickly acquainted with them: making sense of the disability and its secondary complications, accessing vital resources, fighting to be heard in an ableist society. These tips should provide a rough outline for navigating most typical challenges faced by newly injured survivors.
Understand Your Injury
SCI is complicated. Every injury is different. Talk to your physician who performs your surgery. Research your level of injury. Consult with specialists like urology about neurogenic bladder dysfunction and discuss autonomic dysreflexia with neurology. Finding physicians that understand SCI is vital. Consult with physical therapy about building motor function strength if your injury is incomplete; if your injury is complete, discuss passive range of motion exercise.
Access Health Insurance
Check your current plan to see what’s covered. If you have health insurance from work you may be able to continue it temporarily under the COBRA Act. If you don’t have health insurance you may need to purchase it through the Marketplace. If the enrollment period is closed, an exception can be made if you have recently lost coverage. Explore plans to understand cost sharing reductions.
You can also apply for Medicaid if you don’t go over the income and asset limits for your state. If you’re hospitalized when you apply it is usually approved within seven days, as long as you meet the income and asset limit criteria. Qualifying for your state’s Medicaid Long Term Care System which provides assistance for services like nursing home care, assisted living, and in-home care, can take 2-3 months. Apply immediately.
Medicare will take even longer to receive. Once you become eligible to receive SSDI payments (five months after injury), a 24-month Medicare waiting period begins.
Get Into a Good Rehab
Inpatient rehabilitation focuses on intensive therapy and education to maximize a patient’s functional abilities and independence in daily activities. A good rehab is the catalyst in early resilience rates among the SCI community. A good rehab will teach you and your support team all the details of your care routine. Physical therapists will provide instruction on exercise and train you to use mobility equipment. Occupational therapists will explore assistive technology and adaptive aides with you. Nurses will teach you and your care team how to provide care. A good inpatient rehab gives SCI patients an advantage in areas such as self-care, mobility, and bladder and bowel control.
Avoid Pressure Injuries
Individuals with mobility disabilities are at risk for skin breakdown. Sitting or lying down in one place for too long can easily cause a pressure ulcer which takes months to heal. Look out for discolored spots on the skin especially on bony areas. Offload pressure by using wedges and rotation. Invest in a low air loss mattress. Add plenty of protein to your diet. See a wound care doctor as soon as wounds form.
Understand Social Security Benefits
If you were working before sustaining your injury, you may be entitled to Social Security Disability Insurance (SSDI). If you’ve never worked, you may qualify for Supplemental Social Security Insurance (SSI) if your income is less than $2,019 per month; asset limit is $2,000. You can apply for SSI right away but processing can take up to 8 months. SSDI decisions take about 3-5 months, and your first check won’t be cut until the sixth full month after your disability began. If your SSDI benefit is below the SSI Federal Benefit Rate you may qualify for both SSDI and SSI to bring it up to that rate ($967 in 2025). Apply immediately.
Access Homecare
When you go home, you may need assistance with activities of daily living depending on the level and severity of your injury. You may need frequent skilled nursing visits to manage bowels and bladder. Check with your health insurance to see what services are provided. Medicaid typically pays for some home and community-based services.
Find Your Community
Living with spinal cord injury can be isolating. Fortunately communities exist to bring us together. Check out the numerous support groups by searching social media with “SCI”. Join a virtual group through United Spinal or request a knowledgeable mentor through the nationwide nonprofit SPINALpedia. This nonprofit offers help for newly injured individuals- making sure resources and benefits are understood and providing insight and ideas to improve quality of life.
Advocate for Yourself
Health care facilities can be busy, resulting in neglect of patients. Whether you’re still in the hospital following an injury, recovering in a facility, or living at home, you may find your health and care needs inadequately met. You’ll need to voice your concerns to the appropriate departments to be heard. Talk to a hospital patient advocate or representative. If you’re in a long-term care facility, you can contact an Ombudsman.
If you’ve sustained an injury and another party is responsible, contact us today so we can advocate for you and help you get the compensation you deserve.
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