Case managers have a great deal to offer people who have survived traumatic brain injuries (TBIs).

To help patients improve quality of life, case managers must be extremely creative with resources, and flexible with where to find these resources.

“When I evaluate a patient who’s had a severe brain injury, I look at the transition piece from us — when they leave us and what’s going to happen,” says Nancy Weber, MA, CBIS, brain injury case manager and clinical evaluator for the Neurologic Rehabilitation Institute at Brookhaven Hospital in Tulsa, OK.

“Recognizing they’ll only stay with us for a certain length of time, collaborative case management becomes vitally important,” Weber says. “Everyone has to understand the roles they play.”

With brain-injured patients, it truly takes a village to help them, says Janet Mott, PhD, CRC, CCM, rehabilitation counselor/case manager. Mott contracts with the Brain Injury Alliance of Washington in Mount Vernon, VA.

“I think it takes a village of a high population of individuals that might be on the list of who’s going to be there to help this individual, who has significant neurological problems, function in life,” Mott says.

Mott and Weber offer the following additional tips on how case managers can help TBI patients:

• Meet with other service providers to discuss cases. Meetings can include service providers, healthcare professionals, law enforcement, and others. They can discuss cases, subject to HIPAA rules, and problem-solve together, Mott says.

“To me, that’s the essence of case management,” she says. “I know lots of case managers who are viewed as the gatekeepers and have responsibilities for this population. We’re not naïve, but if we all work together, we can make things better for this population.”

Team members can learn from one another and problem-solve together, she adds.

• Provide collaborative case management. There are many people involved in care of a brain injury patient, including the family, patient, social worker, people involved in the patient’s Medicaid or insurance, people in their group home when applicable, and sometimes even attorneys and judges, Weber says.

“So when people say, ‘Are you primarily working with the patient?’ I say, ‘No, that’s our clinical team in the hospital,’” she explains. “I work with everybody else. I do see the patient and evaluate the patient, but that’s all the time I spend. The rest of the time is collaborating with all of the other stakeholders and with other case managers, as well.”

• Keep brain-injured patients out of jails and psychiatric hospitals. One of the tragedies that case managers can help brain-injured patients avoid involves their behavior landing them in prison or a psychiatric hospital.

Sometimes a patient will have been kicked out of group homes because of behavior issues. The patient’s family might have young children at home and not want them exposed to physical and verbal aggression, Weber says.

“When there is damage to certain areas of the brain, there is an impact on planning, emotional control, and inhibition,” she explains. “We might see people with intermittent explosive disorder, and the person might be hypersexual, aggressive, and have delusions.”

If someone in the community calls the police on a patient who has a speech issue related to the brain injury, the patient might be jailed for being disruptive and angry, Weber adds.

The best prevention would be for case management to focus on finding a stable living situation for the patient.

• Find creative resources. Mott has worked with family members to find resources that will accommodate the brain-injured patient’s unique behaviors.

“You have to know it’s a revolving door and there might not be a permanent solution, so you’ll have to be open to that fact,” Mott says.

“I’m working with a young man in his 30s who has had several significant brain injuries and is in the process of having a seizure problem,” she explains. “He has behavior problems and has lost his car because he couldn’t make the payment.”

He also needed housing. So Mott reached out to community organizations, looking for a place he could stay within his disability check budget.

Mott found a retired school teacher who was willing to rent out a spare room and bathroom in her house. “She said she was willing to try it, and he pays her part of his Social Security disability money, and it’s kind of working out, although it’s not perfect,” she says.

The man’s case management also entails finding him a medical solution to his seizures.

“We’re on that mission now to see if things can be solved with medication or whether it would have to be surgery,” Mott says.

• Address the person’s current care needs. “What level of care does this person need at this point?” Weber says. “Sometimes, a family member calls me and says, ‘They’re not the same, driving us all crazy,’ and when I arrive on the scene, I realize we have a case of family burnout.”

The patient might be doing as well as expected, performing activities of daily living, but still need transportation.

“For the most part they’re functioning, but they may get angry,” Weber explains. “Then I say, ‘Let’s look at what resources are available for you as a family unit, so we can get you what you need.’”

• Help the families of people with brain injuries. Burnout is a major issue for caregivers of people with brain injury.

Burnout leads to health and behavioral problems, including substance abuse, neglect, and abandonment, Weber says.

“We’ve had people who wanted to drop off their loved one and never come back again,” she says. “The average length of stay after a severe brain injury was 57 days, and now it’s 17 days, so people are going home quicker and sicker.”

This shifting of care from a healthcare setting to the home and family is putting an enormous burden on patients’ families. “Who is addressing that with the family and offering them guidance?” Weber says.

• Use brain injury alliances as a resource. “All of the active brain injury alliances and associations, I give them a huge shout-out because they are ones that can provide resources to families in states and locally,” Weber says.

“I work closely with the Brain Injury Alliance of Iowa and Washington, going there first and foremost,” she says. “Some are more active than others and also have support groups that can be incredibly helpful.”

When families experience crisis, the alliances might have case managers who can help people face those challenges, she adds.