Brain Injury: Where Will the Journey Go From Here?

As you prepare to make a decision about specialized brain injury treatment and rehabilitation, you’ll want to gather information and recommendations from doctors and others who have been through it. When choosing a program, it is important to consider whether the program is comprehensive, how many patients have gone through the program, and the severity of your loved one’s injury.

Try to gather information about several rehabilitation facilities. Ask your social worker, discharge planner, or doctor for recommendations. You can also call your local Chapter of the Brain Injury Association of America. They may be able to put you in touch with brain injury survivors and their families who have been treated in the brain injury programs you are considering.

Some Key Considerations

• Take time to make good decisions.

• Know your financial information. Talk with your insurance carrier about your coverage and deductible. Get a copy of your health insurance policy or benefits plan. Depending on the cause of your injury, other compensation may be available to you with legal help.

• Don’t rule out a facility just because it is not on the list of facilities covered by your insurance plan. Many insurance companies will make exceptions.

• Write down who you talk to, the date, time, and a summary of your conversation. It is easy to become overwhelmed with information.

• If possible, gather information from more than one rehabilitation program.

• Try not to let location be a deciding factor. The best program for your loved one may have temporary housing or other options for families who must travel long distances.

• Learn as much as you can about each program; learn about its staff, philosophy, and track record. If you do not understand something, ask for it to be explained in a way that you can understand.

• Try to talk with at least one person or family that has participated in the programs you
are considering.

• Visit the facilities, if possible, during the busiest time of day. Watch how the patients interact with the staff. It is important to understand what will happen after hospitalization ends and what kinds of services your loved one might need.

• Look for a program or facility that offers all the care necessary for patients with the same kind of injury your loved one has, which may include intensive care, medical and surgical care, inpatient rehabilitation, day rehabilitation, supported living, and outpatient therapy.

Tips for Choosing a Rehabilitation Program

The goal of brain injury rehabilitation is to help the patient become as independent as possible. Studies show that the earlier rehabilitation begins, the better the results. The following are some questions you can ask when selecting a brain injury rehabilitation program. The best place to start your research is with the hospital admissions staff at the hospital where your loved one is now. Information is also available from the admissions department at each facility you are considering. They usually post information about their programs on their Web site. Once you collect your data, ask your case manager at the hospital to go over it with you.

General Considerations

members can request from the facility’s admissions department or Director of Quality Management. The most important benchmarks to ask about are the amount of functional improvement (called FIM Gain) achieved by brain injury patients from the time of admission to discharge; the setting the patient returned to after discharge; and the number of days in the hospital. To compare rehabilitation facilities, request this information for the most recent 12-month period and complete the table below.

• FIM Gain (a high score means more independence).

• Discharged to: (Going home is most important.)

• Average Length of Stay: (More time devoted to patient/family.)

• What percentage of patients admitted during the last year to the rehabilitation facility (or unit) had the same diagnoses as your loved one?

• What is the average age of patients in the rehabilitation facility? How many patients are the same age as your loved one and will be sharing the rehabilitation experience?

Since there are many stages of recovery from a brain injury, a variety of “levels of care” offered by the same facility may create a smoother road for success. If your loved one will need many different levels of care, find out if the facilities you are considering offer the following:

• A low-level brain injury program for patients in a coma and/or who are slow to recover.

• A day program after discharge with and without housing options.

• A short term care program that will allow the family to take a break from caregving (a few hours or even a few days).

• Long-term supported living in the community and a “clubhouse” program where former patients can drop in to socialize.

• A plan for your loved one’s future.

Services for Family Members

Rehabilitation can be a lengthy process. Therefore, ask about the availability of family support services which guide family members throughout their loved one’s stay. Additional beneficial resources include housing for family members, local area maps and guides, transportation, pastor care, nondenominational services, and various services for families with special needs.

If Possible, Make an On-Site Review of the Facility

Things to evaluate include the physical appearance and size of the rehabilitation facility; general atmosphere (hopefulness of the patients and families, friendliness of the staff); overall resources the facility can offer for the care of your loved one and your family; its use of technology; and its history and reputation of working with patients that have injuries similar to your loved one.

Health Care Team Members and Facility Staff

Look for a health care team specifically formed for treating brain injury. How much staff and time is devoted to physical and cognitive recovery? What is the availability of neuropsychologists and other support specialties like therapeutic recreation, assistive technology, and vocational rehabilitation, which are particularly important to the rehabilitation process?

Community Services for Your Loved One

Many facilities offer both individual and group counseling for patients and families and bring back “successful graduates” to spend time with current patients. To maintain the best possible team approach, most programs prefer to use full-time employees rather than “consultants” who are only available on a part-time basis.

TBI Nurse
“Good rehabilitation gets your brain and body ready for the best recovery possible. No one can tell you when or how much improvement you will get, so stay positive and keep learning everything you can. Families who do that do the best.”

– Rehabilitation nurse with 7 years of experience treating patients with brain injuries.


Traumatic Brain Injury Booklet CoverBrain Injury: A guide for family and friends

Table of Contents

What is a Brain Injury?
How Bad Is It?
How the Brain Functions
Common Problems During Early Recovery
The Intensive Care Unit (ICU)
Understanding Coma
How Does an Injured Brain Heal?
How You Can Help With Recovery
• Where Will the Journey Go From Here?
How Will I Ever Get Through This?
Where to Go for Help
• Books for Families Coping With Brain Injury

Dr. Matthew E. Bain
Dr. Matthew E. Bain

Dr. Matthew Bain, MD received his medical degree in neurology from the Indiana University School of Medicine. He is a practicing neurologist in Indianapolis, Indiana.