Going home from the hospital after a spinal cord injury requires careful planning to ensure your home is accessible and safe, getting the necessary medical equipment, supplies, and home care services, and arranging follow-up appointments with your healthcare team.
In this article, we will guide you through the process of leaving inpatient rehab after a spinal cord injury (SCI) and returning home. We'll explain the discharge planning process, necessary home modifications and equipment, and what you and your family can expect during the transition.
Discharge Planning Process After SCI
Your medical and rehab team will start discharge planning as soon as you are admitted for rehabilitation. Nurses, therapists, social workers and case managers work together with you and your family to build a plan for your homecoming. This plan covers your medical needs, home situation, equipment and caregiver support.
For example, a physical or occupational therapist meets with the patient and talks with the medical team and nurse care coordinator to form a discharge plan. These meetings may include your family or other caregivers. Together you'll set goals (like independence with transfers or self-care) and decide what level of home support and equipment you need.
Typical steps include:
- Team meetings: Your rehab team regularly discusses progress and needs. They will schedule a family meeting to explain the plan. You'll be encouraged to participate, ask questions, and give input.
- Case manager involvement: A nurse or social worker ("case manager") helps coordinate medical equipment, home care orders, therapy appointments and insurance/benefits as you prepare to leave the hospital. They update your plan continually so nothing is missed.
- Home assessment: Before discharge, someone may review your home environment (or have you complete a questionnaire) to identify access barriers. Your therapists or case manager may even visit home to recommend changes like ramps or shower benches.
- Training and practice: In rehab, you will practice daily tasks (transfers, wheelchair skills, self-care) and train caregivers so you can manage safely at home. Education on skin care, bowel/bladder care, and signs of complications is provided.
Researchers stress that successful discharge from rehabilitation for patients with spinal cord injury relies on a smooth transition home. Assessing your readiness to leave can reduce complications and improve satisfaction. In other words, the more prepared you feel (and the more support is arranged), the better you will cope at home. Working closely with your rehab team and case manager ensures your discharge plan covers everything from equipment to follow-up care.
Preparing Your Home: Equipment and Modifications
Making your home safe and accessible is a top priority. Think about changes that let you move around independently. For example, you may need a ramp or platform lift at your entrance, a hospital-style bed, and grab bars or a roll-in shower in the bathroom. Your team will help identify these needs. As a VA guide advises, "When planning your return home, consider modifications and equipment. Think about changes to your home such as ramps and other things that will make spaces in your home easier to move around in."
Common modifications include:
- Entrances and doors: Install a ramp or lift at any steps and widen doorways so a wheelchair or walker can pass through. Replace doorknobs with lever handles.
- Floors and surfaces: Use slip-resistant flooring (especially in showers), remove loose rugs, and make sure hallways and rooms have clear, level paths for maneuvering.
- Bathroom adaptations: Add a roll-in shower or tub bench, grab bars by the toilet and in the shower, and a raised toilet seat. Consider a handheld shower head and non-skid mats.
- Bedroom and living areas: Get a bed that adjusts in height. Arrange furniture to allow wheelchair access. Lower light switches and countertops if needed. Keep frequently used items within easy reach.
Your insurance or local disability programs may cover many of these changes. Veterans should ask their SCI/D team about housing adaptation grants and ramps or grab bars. Even if you have to fund some upgrades, think of it as an investment in safety and independence.
Transitioning Home: What to Expect
Going home after rehab often involves family members or caregivers helping with transfers, transportation, and daily routines. You're not alone in this process. The first day or two at home can be challenging: new routines, schedules for meds or catheter changes, and lots to remember. It's normal for you and your family to feel both excited and anxious. Expect that caregiving tasks will shift more to your household. A spouse, parent, or hired aide may help with bathing, dressing, meal prep, driving to appointments, and other tasks.
You may feel tired at first. Your body has been working hard in rehab, and it will keep adjusting at home. You might need more rest breaks and may not feel fully confident until you've practiced routines a few times in the familiar surroundings. That's okay. Plan for some "learning curve" time. Speak openly with your therapists about what you can do independently and what tasks you still need assistance with. By discharge, most teams set you up with home health nurses or therapists who come visit to check that you're managing well.
A helpful tip is to set up a home health schedule immediately: arrange for at least a nurse visit after a few days home (to review wound care, catheters, etc.), and start outpatient therapy (PT/OT) as recommended. If you can, have the first home visit on a day with family available so everyone gets questions answered.
Preparing Emotionally and Logistically
Going home after an SCI is not just a physical change but an emotional one too. It's common to feel overwhelmed, frustrated, or even grieving the loss of your previous independence. Recognize those feelings are normal, and know that support is available. In fact, studies show about one-third of people with SCI experience depression at some point.
You don't have to cope alone. Talking with a counselor, psychologist, or peer mentor can help you process emotions and stay motivated. Your rehab center can often connect you to a counselor, or you may find support in group therapy or online SCI communities (see resources below).
Logistically, plan ahead to avoid stress. Make checklists for:
- Medical needs: List your medications, doctors, and any therapies. Ensure prescriptions are filled before discharge. Set up durable medical equipment deliveries (like catheters or supplies) to arrive at your home.
- Caregiver planning: Identify who will help you each day and for what tasks. If you hire home care, arrange that before leaving the hospital. Train your caregiver during your rehab stay on transfers and catheter care.
- Transportation: Decide how you'll get to appointments. If you can't drive immediately, look into local paratransit (dial-a-ride) services or ask friends/family for a schedule. If you'll drive, plan for any vehicle modifications.
- Finances and paperwork: Check on insurance coverage and any benefits (like Social Security disability). A social worker can guide you to financial resources or programs that help cover rehab costs, home mods, or caregiving (for example, Medicaid waivers or VA benefits).
Emotionally, keep communication open with your family. They too may be adjusting to new roles. Consider setting up a family meeting (with your rehab social worker) to discuss expectations and concerns. You might also benefit from peer mentors or support groups.
Talking with others who've "been there" can be very reassuring. SpinalCord.com's Recovery Advocates are trained peers who offer practical tips and encouragement by phone or email. Our Spinal Cord Injury Support Group Map can help your family find local or virtual support groups for additional guidance.
Post-Discharge Support Services
After discharge, many services are available to help you regain independence:
- Home Health Care: Nurses or therapists visit your home to teach care skills (like bowel/bladder management or wound care) and monitor your health.
- Outpatient Rehabilitation: You'll likely continue physical therapy (PT) and occupational therapy (OT) on an outpatient basis. These help improve strength, teach adaptive techniques, and progress mobility goals.
- Medical Follow-Up: You will have regular check-ups with specialists (like a physiatrist or urologist). Keep all appointments and tell your doctors about any new problems (like pressure sores or autonomic dysreflexia symptoms).
- Adaptive Equipment Services: Organizations like the VA or local assistive technology programs can provide equipment loans (wheelchairs, shower chairs, etc.) or home modifications. Your rehab team or SpinalCord.com's State SCI Resources page can direct you to these programs by state.
- Peer Support: Talk with a peer counselor or join an SCI peer support group. It can be very motivating to meet others who have adjusted successfully. Many areas offer SCI "peer mentoring" through local hospitals or organizations like United Spinal Association.
- Specialty Programs: Recreational therapy, vocational rehab, and adaptive sports programs can help you reintegrate socially and physically. Ask your rehab staff about community rehab programs (like wheelchair sports or job training).
Remember, even after you leave the hospital, you still have a care team. If you ever feel unprepared or need advice, call your discharge coordinator or therapy team. They expect that the transition is an adjustment and can help fine-tune your home plan. If insurance or distance is an issue, many teams offer phone follow-ups.
SpinalCord.com also offers ongoing support. Besides our Recovery Advocates, our website has infographics that explain self-care (skin checks, catheter routines, etc.) and community guides. We maintain a National SCI Resource Center with links to nonprofit organizations, legal assistance, and more. Don't hesitate to reach out. We're here to help you through the tough early months and beyond.
Why SpinalCord.com Is Trusted
- Decades of Expertise: SpinalCord.com has provided authoritative SCI information since 2004. Our content is reviewed by medical professionals and people living with SCI.
- Comprehensive Support: We cover everything from medical care to daily living and emotional health, so you get a complete picture of life after SCI.
- Community Connections: Through our Recovery Advocates and support group network, we put you in touch with trained peers and caregivers who understand SCI firsthand.
- Up-to-Date Resources: We continually update our state-by-state program guides, infographics, and articles so you have the latest information at your fingertips.
SpinalCord.com is a dedicated community for SCI survivors and caregivers. We provide trusted guidance, helpful tools, and a caring network to support you every step of the way.
Sources: Authoritative resources such as university and hospital publications and VA health guides were used to ensure accuracy. For example, rehab specialists note that forming a discharge plan with the care team is vital, and VA guides highlight the importance of home ramps, adaptive beds and getting help from peer counselors. We strive to provide information consistent with current best practices in SCI care.
References
Traumatic Brain Injury Patient and Caregiver Education - UH Hospitals
Spinal Cord Injury (SCI): Your Transition Home - Veterans Affairs
Spinal Cord Injury or Disorder: Home Modifications - Veterans Affairs
Depression and Spinal Cord Injuries and Disorders - Veterans Affairs
