Hospital and Facility Discharge Planning for Traumatic Brain Injury and Spinal Cord Injuries: Key Decisions, Resources, and Rights
Learn how to work with providers, understand care options, and secure the financial and rehabilitation support necessary for a safe, effective transition.
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People with traumatic brain injuries (TBI, and those with a dual diagnosis of a spinal cord injury (SCI), and their caregivers often need to make decisions regarding the ongoing care and next steps in the recovery process after discharge from an acute care hospital, skilled nursing facility, nursing home, or rehabilitation facility. While some individuals will need lifelong care, others may only need periodic, preventive follow-up care. The options for addressing this spectrum of needs include home health care, inpatient or outpatient rehabilitation, nursing home care, and community-based services.
Source: National Academies of Sciences, Engineering, and Medicine, “Rehabilitation and Long-Term Care Needs after Traumatic Brain Injury.”
These discharge decisions require planning in consultation with the medical team, the person with TBI (as able), and the family and caregivers. In cases of severe TBI, it becomes the job of the family and loved ones to initiate and pursue these discussions as soon as possible.
Planning cannot wait until the day before the discharge. It is an evolving process that must begin on the first day of the first hospital admission. People with TBI and their families must advocate for a workable plan that offers the best opportunity for rehabilitation and recovery. The plan should be discussed among the family, doctors, therapists, social workers, and discharge planners, and these conversations should include identification of all alternatives for the next phase of treatment.
People with TBI and their families should also consider reaching out to local support groups and resources to learn about options directly from patient advocates and support groups for individuals and families.
Need help finding support services near you? See the 50 State Resource Guide.
Early Discharge Planning for People with TBI, Families, and Caregivers
Ask the medical team what type of care will be required upon discharge and get a written list of those options. Ask which option is best, and why. Discuss the pros and cons of each option with the medical team, social workers, and discharge planners. Give yourself time to learn about the options and consider your preferences before you make any decisions.
It is important at the outset to understand the total estimated cost of lifetime acute care, rehabilitation care, skilled nursing care, and outpatient and home care (if available).
Learn about potential financial resources available to you as soon as possible after the first admission and diagnosis. This includes potential liability claims for injuries.
If government health insurance is in place, learn about all the benefits that are available under existing government programs. Find out if there are other programs or benefits that can or should be sought, and the timing involved. If the person with TBI is eligible for those additional benefits, file those applications.
If there is private health insurance, review the policy carefully. You should familiarize yourself with all benefits and coverage available, as well as definitions, limitations, and exclusions. You need to know if the insurer has treatment guidelines and whether the policy has experimental treatment exclusions. You need to provide a complete copy of the insurance policy, including all the definitions, exclusions, and limitations, to the social workers, treating doctors, therapists, discharge planners, and hospital billing personnel. The policy language will help the medical team write letters of medical necessity to try to overcome any denials by insurers.
Promptly consult with expert advisors, including experienced lawyers, disability advocates, and treating physicians about resources in your state.
Keep notes of all communication with insurance company representatives, social workers, discharge planners, and billing personnel. Write down what they say, including recommendations, advice, promises, or representations about benefits and services available and needed, as well as the full names, claim numbers, addresses (email and office), and telephone numbers. Keep copies of all written communications.
Consider guardianship as soon as necessary. Discuss with the medical practitioners whether your loved one has the capacity to make financial and medical decisions. This is critical because guardianship may be necessary to approve the discharge plan, negotiate with the insurance company for benefits, file appeals from benefit denials, and hire a lawyer.
Work with your medical team and advocates to get the treatment recommended by the medical team approved by your insurance carrier. Even if the proposed treatment does not appear to be covered by a private insurance policy or government program, you can negotiate to try to get those treatments, services, and benefits. It is possible to get additional benefits through advocacy and negotiation.
Prepare and file appeals from benefit denials as necessary to extend hospitalization and rehabilitation. Experience proves that when attention is demanded by a person with TBI or their family, the issue is more likely to be addressed.
Planning Checklist for Discharge to Inpatient Rehabilitation, Skilled Nursing, or Nursing Home Facility
When planning for discharge to an inpatient rehabilitation facility, a skilled nursing facility, or nursing home care, it is important to determine which facility will best suit the needs of the person with TBI. You can use this checklist as a tool to compare services and the quality of life at various facilities.
☐ Is the facility Medicare certified?
☐ Is the facility Medicaid certified?
☐ Is the facility accepting new residents?
☐ Does the facility provide all therapies and treatments prescribed on discharge?
☐ Is there a waiting period?
☐ Does the environment appear pleasant and odor-free?
☐ Does the facility appear clean, well-maintained, and safe?
☐ Is the noise level quiet?
☐ Are residents engaging in meaningful activities?
☐ Does the facility maintain outdoor areas for resident use?
☐ Does the facility maintain comfortable temperatures?
☐ Are residents allowed to have personal items and furniture?
☐ Can residents make choices about meals?
☐ Can residents make choices about daily routines?
☐ Do residents have access to personal phones and TVs?
☐ Is the facility easy for family and friends to visit, including location and visiting hours?
☐ Does the facility do background checks on staff?
☐ Are there enough staff on every shift to care for residents?
☐ Does the facility offer continuing education for its staff?
☐ Does the staff respond quickly to requests for help?
☐ Does the staff respond promptly to family concerns?
☐ Does staff appear warm, polite, and respectful?
☐ Are residents clean and properly dressed?
Planning Checklist for Discharge to In-Home Care and Home Health Care
Home health care typically refers to the care provided by licensed medical practitioners, including visiting nurses and therapists. In-home care services are provided in the home by unlicensed people, including family, loved ones, and paid attendants.
Due to inadequate insurance, government funding, and an overall lack of home health care providers, people with TBI often receive home care provided by family and friends. Unfortunately, this places the family in a demanding situation. The family cannot afford or find help to provide in-home care, and at the same time, individual family members cannot afford to lose their income to care for the person with disabilities. Recent Medicaid developments can help families in this situation by allowing family members to be paid to provide care. Medicaid will pay family caregivers through Medicaid Home and Community-Based Services (HCBS) waivers, a benefit that has risen in popularity in the last decade due to provider shortages.
Before you agree to discharge your loved one to return home, use this checklist to confirm that you are prepared and that this is the appropriate option for your loved one:
☐ Meet with the primary or attending physician to review the plan in detail.
☐ Obtain a list of potential medical complications, as well as their signs and symptoms, and understand what to do if they occur.
☐ Insist on a home visit by an occupational therapist to see if home modifications are necessary, and plan for those to be completed in time.
☐ Insist on a written prescription for the number, type, and frequency of all recommended outpatient therapy visits. Confirm approval by the insurance carrier and the provider.
☐ Insist on precertification, if necessary, by the insurance carrier for the number, type, and frequency of all prescribed outpatient therapies.
☐ Confirm that appropriate nursing, rehabilitation, and attendant staff are assigned by a Home Health Agency (HHA), which will provide skilled nursing services and other therapeutic services.
☐ Confirm that transportation is in place for all outpatient therapies.
☐ Obtain a list of all necessary equipment and supplies (e.g., stair lifts and ramps). Confirm that they are in the home and working.
☐ Develop a network of family and friends who can supplement and coordinate the professional nursing and attendant care that will help you to avoid burnout and reduce stress.
Write down any questions you have about any items on this checklist and discuss them with the medical team before agreeing to discharge.
When a person with TBI cannot return home safely after hospital discharge, that person (if able), their family, or caretakers must advocate for transfer to a care setting that provides the most beneficial treatment and services. Some TBI patients with complex medical conditions may need this specialized treatment before admission to an inpatient rehabilitation facility or discharge to a home setting.
Understanding Inpatient Rehabilitation Facilities
Inpatient rehabilitation programs are expensive, and the harsh reality is that due to limited financial resources, “many patients with moderate to severe TBI [that] would benefit from comprehensive interdisciplinary inpatient rehabilitation … are discharged to home or to skilled nursing facilities that may not provide intensive, comprehensive, or specialized therapy and that offer limited opportunities for reevaluation.”
Source: National Academies of Sciences, Engineering, and Medicine, “Rehabilitation and Long-Term Care Needs after Traumatic Brain Injury.”
If you have the resources or have insurance that will pay for inpatient rehabilitation, you should confirm that the facility is accredited by the Commission on Accreditation of Rehabilitation Facilities (CARF). This “independent, nonprofit accreditor of rehabilitation facilities assists service providers in demonstrating value by the quality of their services and meeting internationally recognized organizational and program standards.”
Inpatient rehabilitation facilities can be affiliated with acute care hospitals or they can be independent. The landscape of rehabilitation health care has drastically changed in the last 20 years as the U.S. has moved into an era of enormous consolidation of hospitals, rehabilitation facilities, and charitable health care systems. Nevertheless, the purpose of inpatient rehabilitation facilities remains the same: the services and therapies to help restore a person’s functional ability. The role of therapists in these facilities is not only to provide treatment but also to advocate for necessary services and equipment.
A typical requirement for admission to an inpatient rehabilitation facility is that the person can participate in three hours of rehabilitation per day. It is the job of rehabilitation facilities to train and retrain people with TBI in the activities of daily living and the instrumental activities of daily living. The activities of daily living include bathing, dressing, transferring, toileting, eating, and walking. The instrumental activities of daily living are those things that are required for a person to live independently, and include additional tasks, such as light housework, preparing meals, taking medication, shopping, using the telephone, and managing money.
Physical medicine and rehabilitation physicians, also known as physiatrists, specialize in rehabilitation. They collaborate with people with TBI and their families and the other treating physicians to develop a treatment plan and prescribe therapies geared to the needs of each person, including:
- Speech and Language Therapy: When a brain injury occurs, it can affect a person’s ability to think, chew, swallow, or speak. Speech and language pathologists work to restore these skills and help people learn strategies to compensate for deficits.
- Cognitive Therapy: Cognitive therapy seeks to enhance a patient’s ability to process and interpret information and to improve the person’s ability to perform mental functions.
- Occupational Therapy: Occupational therapists help people with TBI develop the skills needed to live independently. Specifically, they help individuals with TBI improve skills such as self-care, home management, recreation, social skills, cognitive functioning, and the skills needed to return to the community as able, such as shopping, returning to school, work, and driving.
- Physical Therapy: Physical therapists develop care plans for a person with a TBI that are tailored to meet the individual needs of that person. These plans can include such things as gait training, intensity and endurance training, and balance training, as well as therapeutic activities, such as transfers, bed mobility training, neuromuscular re-education, strength training and stretching, and manual therapy.
Evidence-based medical research establishes beyond question that the services and treatments provided in inpatient rehabilitation facilities can improve patients’ lives. That said, private insurance companies are increasingly restricting coverage for these services, which places more burden on people with TBI and their families. This leads to less therapies and services and results in patients not receiving necessary and appropriate health care.
On one hand, private health insurance companies take the position that they will not pay for medical services that do not improve the patient’s condition. Physicians employed by the insurers evaluate whether the medical and rehabilitation services are contributing to the patient’s improvement. If a private health insurer considers the treatment or care the patient is receiving to be custodial or maintenance-type care, the private health insurer will deny coverage under the terms of the policy.
On the other hand, people with TBI, their families, and the treating medical team want to maximize treatment and services to continue rehabilitation gains. This is a battleground, with patients, families, and treating physicians on one side and insurers and their paid-for “expert” physicians on the other. Persons with TBI (as able), families, treating physicians, therapists, caretakers, patient advocates, and experienced lawyers must collaborate to help people with TBIs fight for the benefits they are entitled to under private insurance policies.
An Overview of Skilled Nursing Facilities and Nursing Homes
Each state regulates and licenses nursing homes within its borders. Government programs like Medicare and Medicaid can help with the cost of these facilities. Skilled nursing facilities and nursing homes are likely to participate in government programs. Medicare provides federal health insurance for people with disabilities or the elderly who contribute to Social Security and Medicare through employment. Medicaid is a federal health insurance program implemented by the states for those who do not qualify for Medicare and have limited financial resources. Each state has its own rules and regulations to determine eligibility for Medicaid.
Medicare eligibility for admission to a skilled nursing facility (SNF) requires that a physician certify that the person with TBI requires daily skilled nursing care or other skilled rehabilitation services that are related to the hospitalization and that can be provided only on an inpatient basis.
There are significant differences between the services offered in an SNF and a nursing facility (NF). And that difference in the care provided can impact the outcome. There is growing evidence across the nation that people with TBI who are receiving Medicare and Medicaid benefits, and who require nursing home care, are being transferred as soon as possible to assisted-living units and homes with personal care but little or no rehabilitation care. People with TBI need to have the opportunity to make gains in rehabilitation during the critical period after discharge from hospital acute care. And this will require advocacy.
An NF provides long-term care for those who only need assistance with activities of daily life and limited medical care. Nursing homes may offer social activities but little or none of the critically required rehabilitation therapies. In addition, the evidence is that young people with TBIs are being placed at NFs for the aged, and these facilities do not offer any of the required services and therapies. The denial and delay of this care can make a long-term difference in the ultimate overall rehabilitation.
An SNF, which can be a stand-alone independent facility, part of a hospital, or a specialized unit within the NF, provides more medical care than an NF. SNFs care for people with TBI who need 24/7 medical supervision by physicians, registered nurses, and licensed practical nurses.
However, SNF care is provided by Medicare on a short-term basis only. Medicare will cover up to 100 days of SNF care per hospitalization. Medicare has a benefit period, which, as the name implies, limits the benefits, and which begins on the day a person first receives inpatient hospital or SNF care. Medicare provides up to 100 days of SNF care during any benefit period. There are no limits to the number of benefit periods available. That said, when the benefit period ends, to receive another 100 days of SNF benefits, you must be out of the hospital or SNF for 60 days and then have another three-day inpatient qualifying hospital stay.
If a person with TBI does not meet Medicare’s requirements for the SNF benefit or has exceeded Medicare’s limit of covered benefits, there are circumstances where Medicaid may pay for a stay in an NF if the person meets the Medicaid income and asset guidelines and the functional eligibility criteria for the NF. This is institutional Medicaid.
Each state has its own qualifications for institutional Medicaid NF care. Typically, the standards are based on functional capacity, which Medicaid measures by the person’s capacity to perform activities of daily living, such as bathing, toileting, and dressing.
Even if a person medically qualifies for institutional Medicaid, there are usually financial limitations. The program considers the combined income and assets of the recipient and spouse, but many states will allow a certain amount of income and assets to be set aside for the use of the spouse. To determine eligibility, most states look back at a period of up to five years and count any assets the recipient transferred during that period. There are financial penalties if Medicaid finds violations of this rule. If the person qualifies, they may have a small personal allowance under state rules, but the remainder of their income will be paid by Medicaid to the NF. Where a recipient owns a home, individually or with a spouse, home equity may count as an asset. When the recipient no longer needs long-term care, or they die, this recipient or their estate must repay from assets the cost of the care provided.
When people do not qualify for Medicaid, long-term care in a nursing home (SNF or NF) is expensive. According to a July 2024 survey, the median cost is $8,669 per month for a semi-private room and $9,733 per month for a private room. Obviously, cost depends on several factors, such as the extent of injury, the location of the facility, and the level of care required.
People with serious TBI injuries who do not have financial resources often find themselves losing their financial nest egg due to the cost of medical care, rehabilitation, and nursing care. If an individual is eligible for Medicaid, a continued stay in a nursing home will be for life. But Medicaid has a limit on how much money or assets you can have to be eligible. If someone exceeds that limit, they might need to “spend down” excess money on medical expenses until their assets are below the amount required for eligibility. This can be a complicated process, and these individuals and their families should contact experienced attorneys or advocacy groups for guidance and advice.
What to Know About Outpatient Care
Outpatient care includes medical care, therapies, and treatments that do not require a hospital or inpatient rehabilitation facility stay. Outpatient treatment centers, medical offices, rehabilitation facilities, and hospitals provide these services.
According to the National Institutes of Health, post-acute care (after first admission hospital discharge) focuses on different clinical outcomes than acute care. “While the initial focus of TBI care is on sustaining life and minimizing secondary damage to the brain, post-acute care focuses on the optimization of a person’s day-to-day function and the ability to return to community living. In addition, treatment during these later phases of care aims to minimize post-TBI complications, the development of adverse sequelae, and negative interactions between the effects of TBI and any comorbidities the person may have.” While evidence indicates that earlier initiation of rehabilitation for TBI results in the greatest improvements in function, people with TBI who start rehabilitation therapy later after injury can still make tremendous strides in recovery.
In addition, family involvement in rehabilitation from TBI can be meaningful and is associated with better outcomes. For example, one study found that “family involvement during inpatient rehabilitation may improve community participation and cognitive functioning up to nine months after discharge.” In this study of people during their first inpatient TBI rehabilitation stay, individuals whose family members attended at least 10 percent of therapy sessions were significantly more engaged in their communities after discharge compared with those whose families attended less than 10 percent of sessions. This evidence suggests that improved cognitive recovery is associated with increased family involvement.
A major problem for individuals with TBI is transportation to and from the outpatient facility. Most insurance policies do not cover or reimburse transportation costs. However, Medicaid programs occasionally help with transportation costs.
Source: National Academies of Sciences, Engineering, and Medicine, “Rehabilitation and Long-Term Care Needs after Traumatic Brain Injury.”
Navigating the Discharge Dilemma
People with TBI, or a dual diagnosis of TBI and SCI, often have complex medical problems in addition to their primary diagnosis, such as persistent infections, dementia, and decubitus ulcers, as well as respiratory and urinary impediments. Often, the payor of the rehabilitation benefits (private insurance, Workers’ Compensation, or government benefits) may notify the facility that payments for treatment at the hospital, rehabilitation facility, or nursing home will cease on a certain date. However, the facility may find itself unable to safely discharge on that date because of medical complications. As a result, the facility is both unable to bill for the continued stay and unable to safely discharge the person. This is “the discharge dilemma.”
People on Medicare and Medicaid have the right to make informed decisions about their care during discharge planning. In 2019, the Centers for Medicare & Medicaid Services (CMS) issued a rule about discharge planning. The rule updates hospital discharge planning requirements for long-term acute care hospitals and inpatient rehabilitation hospitals, inpatient psychiatric facilities, children’s hospitals, critical access hospitals, and home health aides (HHAs). These facilities must have a discharge planning process that focuses on the person’s goals of care and treatment preferences. Under these rules, if a person with TBI or a loved one thinks that services are ending or discharge is occurring too soon, they have the right to ask for a fast appeal. In the event of a fast appeal, the patient or family should receive a notice that describes the process, or they can ask the provider for the information. In a fast appeal, Medicare or Medicaid will assign an independent reviewer to decide whether the claimed service should continue.
Discharge dilemma situations are typically exacerbated when, for example, an SNF determines that a person with TBI will no longer benefit from rehabilitation services. The questions are typically:
- What is the real reason for the discharge?
- Will the person benefit from these services?
- Or is the facility’s real concern that it will not be reimbursed by insurance?
When an SNF has recovered all the available insurance coverage, it will not want to care for a person who can no longer afford to pay, and the facility cannot force the family to pay unless they agree to do so. This situation can become even more complicated. For example, there may be no family members or guardians available to advocate or care for the person with a TBI, or the treating physician may agree with the determination that an individual will not benefit from additional services. Other complications include inaccessible homes, no funding for home modifications, a patient with inadequate financial resources, inadequate home care benefits, lack of available attendant and skilled nursing care, or other medical problems, such as behavioral problems, ventilator dependency, and fall risk.
There is not one solution to the all-too-common discharge dilemma. That said, people with TBI, their families, and caretakers must collaborate in all decisions about discharge long before the day of discharge. All questions need to be addressed as soon as possible. Patient advocates, experienced lawyers, and treating physicians can help solve the discharge dilemma in the best interests of the person with TBI.
The two common denominators to solve the discharge dilemma are information and financial resources. Obtaining information can lead to financial resources, like applying for government benefits can help provide necessary services and treatments. Unfortunately, finding additional financial resources beyond government benefits is a more difficult problem to solve. This is the area where an experienced lawyer can help, including by investigating potential liability claims that can lead to an insurance recovery. If there is a lawsuit, it can result in a substantial insurance recovery, and that may help obtain additional housing, benefits, care, and services.
A Word About Assistive Technology and Advancing Therapies
A TBI can cause a lifetime of disabilities, including cognitive, emotional, sensory, and motor impairments. However, in the last several decades, significant advances have been made in treatment techniques and adaptive technology solutions for cognitive disabilities. Some examples of assistive technology include electric wheelchairs, durable medical equipment (DME), augmentative and alternative communication devices, medical equipment, respirators, ventilators, personal emergency response systems, accessible computers, equipment for the visually impaired, and software for individuals with learning difficulties and hearing impairments.
These new therapies and assistive technology devices can improve the quality of life for many individuals with TBIs. Families, advocates, and health care providers need to advocate for people with TBIs to receive these benefits. As the saying goes, “if you don’t ask, you don’t get.”
Many distinct types of available insurance, aside from private health insurance, can pay for or provide assistive technology devices and services, including self-insured health plans, Workers’ Compensation, government programs, nonprofit disability organizations, educational benefit programs, and recoveries from lawsuits. In addition, the Technology-Related Assistance for Individuals with Disabilities Act of 1988 directed that the Department of Education provide state-level grants for technology-related assistance programs for individuals of all ages with disabilities. This law defines assistive technology as equipment of any sort that people with disabilities use to increase, maintain, or improve functional ability.
Insurance companies often automatically deny any requests for new therapies and technology. People with TBI and their advocates must aggressively pursue approval to obtain it. Denials may be issued for a variety of reasons, such as the requested treatment is not medically necessary, experimental, not a covered service, or not an effective treatment. That said, when there is private insurance, the insurance carrier may voluntarily pay for assistive technology if it deems the equipment is medically necessary, meets the definition of durable medical equipment (DME) under the policy, and is not subject to any exclusion under the insurance policy. Medical necessity is established by a report and prescription by a licensed medical practitioner. A letter of medical necessity supporting the prescription for the device must be consistent with the policy provisions and needs to be supported with documentation, such as medical studies and peer-reviewed medical articles that prove its efficacy.
Related Reading: Learn More About These Complex Topics
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