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Financial Resources (Short Term)

Visiting a loved one in the hospital after they have a SCI can cost a lot of money beyond just emotional stress. Here are some common costs that families might have to pay: 

  • Travel and Accommodation

    • ​Costs for gas, public transportation (bus, train), taxis, or ride-sharing services for each visit to the hospital. If the hospital is far away, these costs can add up really fast, especially if you visit often.

    • Daily or hourly parking fees at the hospital can be a lot, especially if you’re there for a long time. Some hospitals might have passes for a whole week or month that costs less, so it’s a good idea to ask about those. 

    • If the family lives far from the hospital, they might need to pay for a hotel or another temporary place to stay so they can be close to their loved one. This can cost a lot of money, especially if the person stays in the hospital for a long time. Sometimes, there are places like the Ronald McDonald House (for families with children) or other hospitality houses near hospitals. These places might let families stay for less money or even for free.However, there might not always be enough room for everyone.

  • Food

    • ​The food at the hospital's cafeteria or from vending machines can cost a lot of money. It might not always be the best food or very healthy either. If family members spend many hours visiting, they can end up spending a lot on these meals.

    • If family members are staying in hotels or are too tired to cook after seeing their loved one, they might buy food from restaurants, costing money. 

    • Even though bringing food from home can save money, you still have to buy the groceries and spend time making the meals. 

  • Lost Income

    • ​Family members might need to take time off from their jobs to visit the person in the hospital. This is especially true if the patient needs a lot of help or if important choices about their medical care need to be made. Taking time off can mean they lose money they would have earned, or they have to use their vacation or sick days.

    • Some family members might even start working fewer hours or quit their jobs completely to take care of and help their loved one during a long hospital stay. This can cause problems with their money for a long time and affect how much they earn in the future.

  • Other Expenses

    • ​Some family members might even start working fewer hours or quit their jobs completely to take care of and help their loved one during a long hospital stay. This can cause problems with their money for a long time and affect how much they earn in the future.

    • Families might make more phone calls, send more texts, or use more internet to talk to other family members and help plan care. These can add to their phone bill or internet costs.

    • It's very stressful and sad when someone you love is in the hospital. Sometimes, this stress can be so big that family members might need to talk to a counselor or get other help for their feelings, resulting in cost. 

    • When someone is away from home for a long time in the hospital, other things at home might still need attention. There could be unexpected costs for fixing things or other needs around the house that the person in the hospital usually took care of.

Ways to Mitigate Costs

1. Ask the hospital if they can help with money, cheaper parking, or food tickets for families. Social workers at the hospital can often tell you about these kinds of help. 2. Some groups, like the Ronald McDonald House, local churches, or disease-specific charities, might offer places to stay, food, or money help. 3. Work together with other family members to share costs. You can share money for gas, places to stay, and food. 4. If you can, take public transportation or carpool, which can save a lot of money on travel. 5. Pack your own food and drinks. This can save a lot of money compared to buying food at the hospital or in restaurants. 6. When you call hotels near the hospital, ask if they have special prices for families of people in the hospital. 7. Look for online support groups and resources. These can help you feel better and give you ideas for dealing with having a loved one in the hospital.

It's important for family members to know about these possible costs and to find help and ways to save money. This can make things a little easier during a tough time.

Financial Changes After SCI

Scenario 1: Sasha

Sasha is 32 years old and works as a graphic designer. She was an active and independent person, but then she got a T-6 spinal cord injury in a car accident, resulting in paraplegia. After spending weeks in the hospital and an inpatient rehabilitation facility, Sasha went back home. Life was very different. She couldn’t do her job any more because it required her to sit at a desk for a long time and visit sites. She also needed help with many everyday tasks. Her medical bills were getting bigger, and she wasn’t making money anymore. It was very stressful. At the rehabilitation center, a social worker told Sasha a little bit about something called Social Security Disability Insurance (SSDI), but it sounded hard to apply for. After she got home and her health was more stable, Sasha knew she had to figure out how to deal with her financial situation.

Here's a deeper look into Sasha's SSDI application journey:

1. Gathering Medical Evidence: First, Sasha would need to gather all her medical records. This would include hospital discharge summaries, surgical reports, physical therapy notes, occupational therapy evaluations, doctor's notes detailing her diagnosis, prognosis, and functional limitations, and any imaging results (MRI, X-rays). The more comprehensive and detailed the medical evidence, the stronger her claim. 2. Contacting Social Security: Next, Sasha would need to get in touch with the Social Security Administration (SSA). She could do this online, by phone, or by visiting a local SSA office. Since it’s hard for her to get around, she would probably choose to apply online or call. 3. The Application Process: The application is long. Sasha would need to provide detailed information about her injury, her past work history (including job duties and earnings), her current limitations, and what "substantial gainful activity” she can’t do now because of her injury. She would also need to list all her healthcare providers. 4. Disability Determination Services (DDS): After she sends in her application, it would go to a state office called DDS. There, a team of disability examiners and medical consultants would look at her medical records and other information. They would decide if her injury counts as a disability. That means they check if she can’t do her old job, can’t do other work, and if her condition will last at least a year or could lead to death. 5. Potential for Consultative Examination (CE): In some cases, if the DDS team feels they need more information, they might schedule Sasha for a Consultative Examination (CE) with an independent doctor. This is an exam paid for by the SSA to get more medical evidence. 6. Waiting Period and Decision: The waiting period for a decision can vary, often taking several months. During this time, Sasha would be anxious, but she would understand that it takes time to look at everything carefully. 7. Approval or Appeal: If she gets approved, Sasha would start getting money after five months from when her injury started. If she gets denied, she would have the right to appeal the decision, a process that can involve several levels of review, including reconsideration, a hearing before an Administrative Law Judge (ALJ), and potentially further appeals. Given the severity and permanency of a spinal cord injury, initial approval is often more likely if the medical documentation is robust.

Sasha’s path to applying for SSDI would take time and effort, but it is an important step to help her get the money she needs to live with her spinal cord injury. 

Scenario 2: Mark

Mark is 45 years old and worked as a construction foreman, and he was proud of how strong he was and how he led his team. His job meant he was always busy - lifting heavy things, and managing large crews. However, on one normal Tuesday, he fell off scaffolding, and everything changed. He got C5 spinal cord injury, resulting in quadriplegia. After emergency care, several surgeries, and a long stay in a rehabilitation hospital, Mark finally went home. Life was now very hard. His wife, Sarah, became his primary caregiver, and their financial situation, which used to be fine, was now shaky. Mark knew that he couldn't go back to his old job, and even doing basic personal care was really hard.

Here's a deeper look into Mark's SSDI application journey:

Phase 1: Initial Application – The Overwhelming First Steps Immediate Medical Documentation: Even before returning home, Sarah, with the guidance of the hospital's social worker, started collecting Mark's medical records. This included every emergency room visit note, surgical report (detailing the C5 fusion and stabilization), MRI and CT scans showing the spinal cord damage, and detailed notes from his neurologists and orthopedic surgeons. They made sure to get copies of all physical and occupational therapy evaluations, which had detailed documentation of Mark's limited range of motion, muscle weakness (often graded on a 0-5 scale, showing "0" or "1" for many muscle groups), and inability to perform basic self-care tasks. Understanding the "Blue Book": The social worker also provided information about the SSA's "Blue Book" (Listing of Impairments). Mark's C5 injury, with significant motor function disorganization in all four limbs, immediately pointed to Section 11.08 (Spinal Cord or Nerve Root Lesions Due to Any Cause), and possibly Section 1.04 (Disorders of the Spine) because of the vertebral fracture and nerve root compression. To qualify, they needed to show objective medical evidence of complete loss of function or extreme limitations in two extremities (making it impossible to stand, walk, or use hands effectively). Online Application - A Test of Patience: A few weeks after Mark got home and things settled down a little, Sarah began the online SSDI application for Mark. It was extensive, requiring not only Mark's personal information but also his detailed work history for the past 15 years, including job titles, duties, and how his injury now prevented him from doing that work. She also listed every doctor, hospital, and clinic Mark had visited since the accident, along with dates of treatment and medications. The "Adult Disability Checklist" from the SSA website helped her keep everything organized. Disability Report – Narrating the Impact: One important part of the application was the “Disability Report.” Sarah helped Mark explain, in simple words, how his injury changed every aspect of his daily life. He couldn’t dress or feed himself without special tools, couldn’t move from bed to wheelchair on his own, and couldn’t help with anything around the house. They also talked about his constant neuropathic pain, bladder and bowel dysfunction, and how tired he felt all the time. This personal story along with the medical facts, helped show how serious his condition really was. Phase 2: The Waiting Game and Further Scrutiny DDS Review: Mark's application, along with all medical records, was sent to Ohio's Disability Determination Services (DDS). Here, a disability examiner and a medical consultant reviewed everything. They checked his medical records against the SSA’s Blue Book to see if his spinal cord injury matched rules for getting disability help. Consultative Examination (CE): Given the severity, but also the need for a current, independent assessment, the DDS scheduled Mark for a Consultative Examination with a neurologist. Even though it was hard for him to get there, Mark went. The doctor performed a physical examination, assessing muscle strength, reflexes, and sensation, and reviewed his existing medical records. This CE report was added to Mark’s file. Additional Information Requests: Over the next few months, the SSA might ask for more information, perhaps clarifying a specific treatment date or requesting more recent physical therapy notes. Sarah made sure to send everything quickly, knowing that delays could slow down the decision. Phase 3: The Decision – Hope and the Path Forward The Approval: Because Mark’s C5 spinal cord injury was very serious, and his medical records clearly matched the rules in the SSA’s Blue Book, his application was approved. The Social Security office agreed that Mark had “complete loss of function” in many parts of his body and could not do any kind of work. The Waiting Period: Mark and Sarah were very relieved to hear the good news. But they also learned that there was a five-month wait from the time Mark became disabled before he would get his first SSDI payment. During this time, Mark focused on his rehab and getting used to his new way of life, knowing that help was on the way. Medicare Eligibility: Sarah also found out that after Mark gets SSDI for 24 months, he would be able to get Medicare. This would help pay for the many doctor visits and treatments he still needed because of his spinal cord injury.

Mark’s journey through the SSDI application was hard, but it showed how important it was to have good medical records, explain clearly what he could and couldn’t do, and not give up. Getting SSDI was a big help for his financial situation and let him focus on learning how to live with his spinal cord injury.

Scenario 3: Elena

Elena is 28 years old and worked as a barista in Ohio. She loved her job and dreamed of opening her own coffee shop one day. However, everything changed when she had a bike accident and got T10 spinal cord injury, resulting in complete paraplegia. After getting emergency care and spending time in intensive inpatient rehabilitation, Elena went back to her apartment, which now felt full of obstacles she couldn’t get past. Her private health insurance helped with her hospital care, but it didn’t pay for long-term personal care, home modifications, and specialized equipment she needed to live independently. She also wasn’t earning money anymore, so she couldn't afford to pay for help herself. Elena knew she had to look into Medicaid and the crucial waiver programs, and she also started applying for SSDI.

Here's a deeper look into Elena's SSDI application journey:

Phase 1: Applying for Medicaid and Initiating SSDI – The Dual Approach Initial Contact and Eligibility Check for Medicaid: While Elena was still recovering, her sister Maria helped her get started with Medicaid. Maria remembered that the rehabilitation social work had said Medicaid could help. They went to the Ohio Benefits website (benefits.ohio.gov), which is the fastest way to apply. They also wrote down the phone number for the Ohio Medicaid Consumer Hotline (1-800-324-8680) in case they needed help or wanted to apply by phone. Understanding Medicaid Financial Requirements (Pre-SSDI Income): Elena found out that to get Medicaid in Ohio, people with disabilities have to meet certain money and savings limits. In 2025, someone applying alone could only make up to $794 a month for regular Medicaid (called ABD Medicaid) and have no more than $2,000 in assets. For special Medicaid Waivers, the income limit was higher—$2,901 a month—but the asset limit stayed the same. Since Elena had no job and very little savings after her accident, she likely qualified Gathering Documentation for Both: Maria helped Elena gather all the necessary documents for both Medicaid and SSDI. This included: Proof of Ohio residency (driver's license, utility bills). Proof of U.S. citizenship or alien status. Her Social Security Number. Extensive medical records detailing her T10 SCI, including hospital discharge summaries, neurological assessments, rehabilitation progress reports, and doctor's notes confirming her permanent disability and the functional limitations it imposed. These documents were critical for both Medicaid's disability determination and the SSDI application. Statements for any bank accounts or other financial assets. Detailed work history for the SSDI application. Completing the ApplicationsMaria used the Ohio Benefits website to fill out the Medicaid form called “Request for Cash, Food and Medical Assistance” (JFS 07200). She made sure to say Elena was applying because of a disability. At the same time, she started the SSDI application on the Social Security website. She explained Elena’s injury and how she can’t perform “substantial gainful activity” (SGA). In 2025, non-blind applicants can’t earn more than $1,620 a month to qualify for SSDI. Submitting and Following Up: After submitting both applications online, they got confirmation numbers. Maria set reminders to follow up with the Cuyahoga County Department of Job and Family Services (CDJFS) for Medicaid and the Social Security Administration (SSA) for SSDI. Phase 2: The Impact of SSDI Approval on Medicaid – Coordination is Key SSDI Approval and its Income: A few months later, Elena got great news - her SSDI application was approved. She would start getting monthly payments, which was a relief. However, she also learned that this money would count as income and could affect her Medicaid eligibility, since Medicaid has income limits. Medicaid Redetermination and Qualified Income Trust (QIT): At first, Elena got Medicaid because she had low income. However, now she was getting SSDI, which was likely above the basic ABD Medicaid income limit of $794/month (but potentially below the Medicaid Waiver limit of $2,901/month), her case had to be reviewed again. If her SSDI income was above the basic ABD Medicaid limit but below the waiver limit, she could still get Medicaid if she qualified for a waiver program, as the waiver income limit is higher. If her SSDI income was above the Medicaid Waiver income limit of $2,901 per month, she would need to set up a Qualified Income Trust (QIT), also known as a "Miller Trust." A QIT is a special legal instrument where income exceeding the Medicaid limit is deposited into the trust, allowing the individual to still qualify for Medicaid. This "excess" income in the QIT is then used to pay for medical expenses or a portion of her care costs, if applicable. Maintaining Medicaid for Waiver Services: Elena's goal was to maintain her Medicaid coverage because it gave her access to the Home and Community-Based Services (HCBS) waivers. Without Medicaid, she wouldn’t be able to get these crucial services for in-home care. Phase 3: Securing Waiver Resources and Maximizing Benefits Understanding the Need for Waivers and SSDI's Role: Now that Elena is likely able to keep her Medicaid (either directly or by using a QIT because of her SSDI income), she and her sister Maria focused on learning more about waivers. SSDI would help pay for her everyday needs like rent and food, but it wouldn’t cover the special long-term care she needed that waivers provide. Detailed Waiver Research: They went to the Ohio Department of Medicaid website (medicaid.ohio.gov) and looked at the section called “HCBS Waivers”: They focused on the Head and Spinal Cord Injury (HASCI) Waiver and the Ohio Home Care Waiver (OHCW), both designed for individuals with physical disabilities who meet a nursing facility level of care but wish to stay in their homes. Elena, being under 60, was eligible for the OHCW. Contacting Key Agencies for Waiver Enrollment: To get personalized information and begin the waiver application process, Elena (with Maria's help) reached out to: Ohio Benefits Long-Term Services and Supports (OBLTSS) Hotline (844-644-6582): A support navigator helped them understand the specific eligibility for each waiver, the importance of the "level of care" assessment, and how her SSDI income would be considered for waiver eligibility. They confirmed that for waiver eligibility, her income could be higher than for basic Medicaid, but if it exceeded $2,901/month, a QIT would be necessary to "spend down" the income to the eligible level. Cuyahoga County Department of Job and Family Services (CDJFS): They continued to engage with CDJFS for the formal submission of Form ODM 02399, "Request for Medicaid Home and Community-Based Services (HCBS) Waiver," clearly indicating Elena's interest in the HASCI and OHCW waivers. The "Level of Care" Assessment (Essential for Waivers): Even though Elena was getting SSDI, she still had to pass "nursing facility level of care" (LOC) assessment. A case manager (assigned by ODM) would visit and objectively determine if Elena's T10 SCI and functional limitations were severe enough that she would need institutional care unless she got help from home. If she passed this check, she could get waiver services at home instead. Utilizing Both Benefits: Elena's SSDI benefits would provide her with a monthly income to cover her personal living expenses, such as rent, groceries, and utilities. Her Medicaid, combined with the approved waiver (like HASCI or OHCW), would then cover the costs of crucial in-home services like personal care attendants, durable medical equipment (like a specialized wheelchair or shower chair), home modifications for accessibility (e.g., ramp installation, bathroom grab bars), and rehabilitation therapies provided in her home. This plan helped Elena stay in her home, get the care she needed, and manage her finances wisely.

Elena worked hard to make sure her SSDI, Medicaid, and waiver applications all worked together. This helped her have steady money to live on and also get the long-term care she needed to live on her own and do well after her spinal cord injury.

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