Discharge Planning After a Traumatic Brain Injury: Ensuring a Smooth Transition to Home or Other Care Setting

Understanding the next steps in the recovery process after a TBI hospitalization

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People with a TBI often need to make decisions regarding care after discharge from an acute hospital. What are the next steps in the recovery process?

Options include: 

  • Home health care
  • Inpatient or outpatient rehabilitation
  • Nursing home care
  • Community-based services

Some individuals will need lifelong care, but others may only need periodic, preventive follow-up care. Discharge decisions (whether from the acute hospital, skilled nursing facility, nursing home, or rehabilitation facility) 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 families must advocate for a plan that is workable and allow people with TBI 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.

 

Source:
National Academies of Sciences, Engineering, and Medicine, “Rehabilitation and Long-Term Care Needs after Traumatic Brain Injury.”

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Questions You Should Ask Your Medical Team About TBI Discharge Planning
  • What are the goals of this phase of treatment?
  • What are the options for the next phase of treatment — for example, home and outpatient treatment versus inpatient facility?
  • What kind of inpatient facility?
  • If there are options, what are the pros and cons of each option?
  • What recovery or rehabilitation goals must the person with TBI achieve prior to discharge to be eligible to move on to the next phase of treatment?
  • If the recommendation is home care, what services need to be provided, who will provide them, and what equipment will be needed?
  • If the recommendation is a facility, can the family have time to visit the facility before making any decision?
  • Will insurance pay for the next phase of treatment?
  • Will government benefits and services be required in the future, and which kind?
  • How do you apply for those benefits, how long will it take to obtain those benefits, and can you get advice and help in that process?

Early TBI Discharge Planning for Patients, Families, and Caregivers

Use this checklist to navigate the preliminary stages of the discharge planning process:

▢  Understand Treatment Options After Discharge: 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.

▢  Research Financial Resources: 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.

▢  Inquire About Government Health Insurance: If government health insurance is in place, learn about all 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. 

▢  Learn About Your Private Health Insurance: 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.  

▢  Understand Cost of Care: Calculate the amount of coverage available for lifetime acute care, rehabilitation care, skilled nursing care, and outpatient and home care, if available.

▢  Obtain Expert Consultations: Promptly consult with expert advisors, including experienced lawyers, disability advocates, and treating physicians about resources in your state. See the 50 State Resource Guide for more information.

▢  Track Communications: 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.

▢  Obtain Guardianship (If Needed): 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. 

▢  Seek Treatment Approvals: 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. 

▢  Plan for Insurance Denial Appeals: Prepare to 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 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.

Facility Comparison Checklist

Use this tool to compare the services and 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 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 TV?

▢  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 for help?

▢  Does staff appear warm, polite, and respectful?

▢  Are residents clean and properly dressed?

▢  Does the staff respond to family concerns promptly?

Planning for Discharge: 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, many families cannot provide this in-home care and still afford to keep a roof over their heads and food on the table. 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.

Source:
National Health Law Program

Readiness Checklist

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:

  • Involve the treating doctor in the proposed plan. Meet with the primary or attending physician and review the plan in detail.
  • Obtain a list of potential medical complications as well as signs and symptoms of those complications and what to do about them 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. Confirm that they are in the home and working (for example, stair lifts and ramps).
  • 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. Discuss your questions with the medical team before you even think about 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. 

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 facility is accredited. The Commission on Accreditation of Rehabilitation Facilities (CARF) is “an independent, nonprofit accreditor of rehabilitation facilities. Through accreditation,  [CARF] assists service providers in demonstrating value by the quality of their services and meeting internationally recognized organizational and program standards…” When considering any rehab program, one of the first questions is whether the facility is accredited by CARF.

 

Inpatient Rehabilitation Facilities

Inpatient rehabilitation facilities can be affiliated with acute care hospitals or can be independent. The landscape of rehabilitation health care has drastically changed in the last twenty years as the US has moved into an era of enormous consolidation of hospitals, rehabilitation facilities, and 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 the 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 TBI fight for the benefits they are entitled to under private insurance policies.

Sources:
Flint Rehab, Journal of Physical Therapy Science, and North Carolina Medical Journal

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 for 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 aged who contribute to Social Security and Medicare through employment. Medicaid is a federal health insurance program implemented by the states for those that 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 TBI 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 a 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 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 for 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. Cost obviously depends on several factors, such as extent of injury, location of the facility, and 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 to be eligible for Medicaid, some recipients must “spend down” assets to qualify. Medicaid has a limit on how much money or assets you can have to be eligible. If someone is over 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.

Sources:
Medicare.gov, Medicaid.gov, and US News

Outpatient Care

Outpatient care includes medical care, therapies, and treatments that do not require a stay in a hospital or inpatient rehabilitation facility. 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.

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 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 person with TBI or the family should receive a notice that describes the process of a fast appeal or 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, a 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 that 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 be part of the team to help try to 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.

Sources:
National Academies of Sciences, Engineering, and Medicine, CMS.gov, and Medicare.gov

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 TBI. Families, advocates, and health care providers need to advocate for people with TBI 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 assisted 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 deny any requests for new therapies and technology in an automatic fashion. People with TBI and their advocates must aggressively pursue treatment to obtain it. Denials may be issued for a variety of reasons, such the requested treatment is not medically necessary, experimental, not a covered service, or not 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 supporting the efficacy of the assistive technology, and peer reviewed medical articles.

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