Street Roots is running an in-depth investigative series on Brain injuries and homelessness. Read “Part I: All in their heads,” and “Part II: Why Diagnosing traumatic brain injuries on the streets matters.”
By Stacy Brownhill, Staff Writer
Imagine two scenarios.
In the first, a once clever and outgoing young man experiences a traumatic brain injury (TBI), loses his job, isolates his family and friends and winds up on the streets. When he tries to get help, his erratic behavior frustrates his social workers. He forgets his follow-up appointments. When he goes to a health clinic, the question of prior head injury is never raised, overshadowed by a litany of other issues and lack of time. Even if he thinks to tell the doctor himself, the TBI record is not shared with other clinics. As his own behavior becomes increasingly unfamiliar, the man starts self-medicating with alcohol, decreasing his chances for disability benefits and amplifying his already antisocial behavior. His chances of rebuilding his life are slim.
In the second scenario, the employer, social workers and doctor recognize symptoms of the man’s TBI. The man takes a basic screening assessment that supports the diagnosis, and when he is asked, he recalls the brain injury incident. The TBI is systematically highlighted in a shared database so that all safety-net agencies are aware of his history. His TBI qualifies him for prioritized housing at a shelter, giving him rest, structure and a network of advocates. He is given a day planner so he can remember his appointments. Social workers are able to get him disability benefits. He builds a new life.
Unfortunately, if you’ve been following our series on traumatic brain injuries and homelessness -“All in their heads” (Street Roots, May 27) and “What we don’t know will hurt us” (Street Roots, June 10)-you’ll recall the first scenario is much closer to the truth. Studies show TBI is common on the streets, even a cause of homelessness, but screening, tracking, treatment and recovery are rare.
However, there are tangible ways to move Portland towards scenario two, and improve how we share homeless health care information in general.
It starts with screening
“When I went to a brain injury conference, I realized, it’s not all mental illness, it’s brain injury,” says Dr. Jan Caughlan, Director of Mental Health and Social Work at Baltimore’s Health Care for the Homeless. “We should call ourselves Health Care for the Brain Injured,” she jokes.
Caughlan, who started out as a case manager in 1991, says she’s learned that, as a rule, TBI is not recognized and patients do not self-identify. “To diagnose TBI, you have to pay attention. You have to get a good history. You may be working on your gut, but the behavior of a brain-injured client is really different from a mentally ill client,” she says, “and it’s common.”
Caughlan describes her TBI cases as “very individual,” but often marked by erratic, frustrated behaviors.
Liora Berry of Cascadia Behavioral Healthcare says that spontaneous anger can be a misunderstood symptom of someone with TBI. “It’s the inconsistencies in brain trauma that make it so difficult for providers to understand,” says Berry. “It’s easy to get the impression that they’re just not interested in services.”
Andrew Ellis, clinical director of the Brain Injury Rehabilitation Center in Beaverton, gives another example of the difference between mental illness and TBI. “Someone who is clinically depressed will have days when their mood is better and problems dissipate,” says Ellis. “For someone with a TBI, those problems won’t dissipate.”
Personal acquaintances can help by identifying changes in pre-TBI and post-TBI behavior, says Ellis. Some of his TBI patients are “floored at the changes others perceive.”
Screening for TBI does not have to be complicated. The Defense and Veterans Brain Injury Center’s “Brief Traumatic Brain Injury Screen” uses three basic questions to detect TBI:
1. Did you have any injury(ies) during your deployment from … fragment … bullet … blast … ?
2. Did any injury received while you were deployed result in … being dazed, confused or “seeing stars”… losing consciousness … having any symptoms of concussion afterward (such as headache, dizziness, irritability, etc.) … ?
3. Are you currently experiencing any of the following problems that you think might be related to a possible head injury … headaches, dizziness, memory problems, balance problems … irritability, sleep problems?
Ellis believes such a basic screening could be easily adapted for the homeless population.
Mellani Calvin, program director of a disability benefits training and consulting company and former manager of Central City Concern’s B.E.S.T. program, says she interviews homeless clients for personal history and does a series of basic cognitive tests to look at levels of functioning. “I always ask about TBI,” says Calvin. “When I was at B.E.S.T., about half of our clients answered yes to mild TBI, and about a quarter to severe-knocked-out-cold TBI.”
“Ideally, I hope we get to the point (with homeless health care) where we take time to ask questions and do mini-assessments … starting with front door staff,” says Berry. “I don’t know how often that’s actually happening.”
“What clearly has to happen when TBI-folks get into housing is everybody has to understand what TBI is,” says Dr. Jim O’Connell, president of Boston’s Health Care for the Homeless Program. He cites the program’s Barbara McInnis House, a 104-bed medical respite care center, as a creative outlet for times when tensions arise between clients with TBI and staff at other shelters. “If you understand their outbursts as a manifestation of their illness and expect them, you can set up an environment that’s conducive. Otherwise, they’re more likely to get evicted.”
Taking the time
“With most systems – whether it’s medical, mental health or social work – you have a brief amount of time to talk to someone,” says Berry. When providers spend more time with clients, they build trust, which can make all the difference in the cognitive impairment cases, says Berry.
“Sometimes our staff begins to pick out themes of what’s going on with people they see over time. Then we have to sort out how we can help them,” says Berry.
Steve Mattsson, manager of Hooper Sobering Center, agrees wholeheartedly. “Getting to know individual people makes a huge difference when it comes to recognizing brain injury,” says Mattsson. “Homeless people are notoriously poor historians, but our EMTs will often recognize a person and remember his history.”
Berry cites techniques developed by psychologist Virginia Luchetti to help TBI clients: “First you have to address daily living by helping them figure out how to use the phone, handle money, take public transit, then you have to work on social skills, concentration and memory.” Luchetti’s strategy emphasizes spending quality time with a TBI patient by removing distractions and framing questions respectfully.
Connecting health care systems
“Electronic health records would be a significant tool if someone walks into one clinic and has been going to another clinic without making a connection himself,” says Sam Chase, executive director at Coalition of Community Health Clinics.
But we’re not there yet, (see “The Good, The Bad and The Ugly: Tracking Health Care for the Homeless”). Each safety-net agency in Portland has its own independent database that is typically incompatible with other databases. Shelter records, medical records, mental health records, substance abuse records and incarceration records are all separate islands, making it daunting to track care across multiple systems.
When it comes to TBI, the notorious “invisible disease,” sharing health records is especially important. One study by the San Francisco Department of Public Health found that a homeless person is much more likely to self-report asthma, heart disease, diabetes and substance abuse, than to self-report TBI.
Realistic treatment plans
“We need to expand services like neuropsych evaluations and treatment and rehabilitation. Having something effective to do once a person screens for brain injury might increase the chance the practice is done more routinely,” says Caughlan.
“Psychiatric treatment and speech and occupational therapy are critical,” says Ellis, although he admits those resources are more challenging for homeless clients. “Even 40-hour-a-week, middle-class people may not get rehab covered depending on their flavor of insurance,” he says.
“The more integrated, one-stop-shop health care we can provide for the homeless, the better. One vision I have is offering neuropsych testing and occupational therapy in-house (at Health Care for the Homeless Baltimore),” says Caughlan.
Both Caughlan and Ellis say a more realistic, key step to helping a TBI patient is identifying their deficits and creating a compensation plan made up of small goals. “One of the hardest parts of rehabilitation for a TBI survivor is readjusting your lifestyle and letting go of goals you had before your injury,” says Ellis.
Some of those lifestyle changes can be small. “There’s little things that can help with TBI, like keeping a notebook, calendar, watches, all things that are not in the backpack of a homeless person,” says Berry.
Another realistic treatment method is rest. “Rest is critical to treating TBI, says Ellis. “Routine and structure having a consistent abode can be key, he says.
In Portland, the new Bud Clark Commons takes TBI symptoms, such as memory loss, disorganization, weak social skills and poor anger management, into account when prioritizing who receives beds, which will provide a unique recovery space for TBI clients.
Whether the reasoning is to lower health care costs, reduce rates of incarceration, strengthen families, or reduce homelessness, studying TBI on the streets is a worthy funding cause.
Dr. Theresa Petrenchik, who helped lead two studies that found significant rates of TBI among the homeless, believes cities need to survey for TBI on the streets. Whether the surveys focus on the rate of TBI, links to other health problems, patterns of clinic visits, or financial costs of addressing TBI, “the point … is there is now enough evidence to suggest a link between (TBI) and homelessness,” says Petrenchik. “Each city must … decide what it will do in response.”
Doctors Stephen Hwang and Barbara Wismer, both proponents of documenting TBI among the homeless, independently estimate that $10,000 is the minimum required to conduct a barebones TBI survey in a single city.
Hwang and Wismer are part of a national team of researchers interested in conducting a 10-city study of TBI. They are hoping to receive $10,000 – $300,000, with the ultimate goal to develop an intervention to improve the health of homeless patients with TBI.
Making the dream a reality
“I just feel like this is a huge issue. If we as a community and as a nation wrapped our heads around (TBI) we could create real services and be more respectful rather than jumping to conclusions,” says Berry.
“My dream is that cognitive rehabilitation will become as available as mental health and substance abuse treatment to people who need it,” says Caughlan. “Realizing this vision isn’t solely a funding problem; we need to also develop a trained workforce, and infrastructure – none of which will happen overnight.
“I don’t blame anyone for not wanting to look at this. It’s a bit daunting if you take in the totality. At the same time, we provide these other treatment services for very good reasons: to help people maximize their potential and to reduce the harm in the community that is linked to untreated disease.
“These are reasons enough to get busy building the work-force and infrastructure.”