James Smith is a 53-year-old Portland veteran who used to have a job he loved. After a car accident left him with traumatic brain and neck injuries in 2005, Smith lost his job, ran out of money and wound up on the streets.

When Smith tried to apply for Social Security Disability Insurance (SSDI), he was denied three times because he was flagged as violent. He was loud, angry and high-strung – symptoms of traumatic brain injury, or TBI. For years, Smith sunk deeper into despair.

This week, with the help of Portland law firm Swanson, Thomas & Coon and Central City Concern’s BEST programme, Smith won his second hearing. The benefits he was awarded will give Smith a house, health care and a new life.

People suffering from TBI, the so-called invisible disease, can seem angry, forgetful, antisocial and disinterested. They may slur their speech, talk too loudly and walk crookedly. In other words, it’s easy to mistake people with TBI for being intoxicated, high, mentally ill, suffering from fetal alcohol syndrome or even averse to getting help.

It’s especially easy to make those mistakes when the person is homeless and already burdened with stigmas.

In October 2008, Portland’s Housing Bureau partnered with New York City-based Common Ground Institute to survey 646 homeless people on the streets of Portland. The resulting “Vulnerability Index” found that about half were medically vulnerable.

One of the medical conditions PHB was curious about was traumatic brain injury; however, because TBI can be so difficult to correctly diagnose, the field was left “To Be Determined.”

That same year, the city of Hamilton, Ontario awarded funding for a programme that offered counseling and intensive case management to 176 chronically homeless men. Forty-nine of those men agreed to participate in a more in-depth pilot programme that included advanced neuropsychological testing. A staggering 98 percent of men in the pilot programme met the criteria for TBI.

Today, we’re as clueless about TBI on the streets of Portland as we were three years ago. But TBI is causing a stir among scientists, social workers, city officials, the military and the NFL. What they’re discovering is surprising.

It can happen to anyone

Traumatic brain injury is indiscriminate, and it is the leading cause of death and disability in North America for people under 45, according to the Brain Trauma Foundation. There are an estimated 1.7 million deaths, hospitalisations, and ER visits related to TBI every year, according to the Centres for Disease Control.

Treatment is expensive and complex. X-rays, CT scans and MRIs help confirm TBI, and individualised physical therapy, speech language therapy, occupational therapy, psychological therapy and social support are usually needed to stabilise a TBI victim.

But “the equipment and support are not always available for homeless people even if a clinic suspects someone has TBI,” says Dr. Barb Wismer, board member of the National Healthcare for the Homeless Council.

“It’s trial and error,” says Dr. Phil Shapiro, a psychiatrist at the 12th Avenue Recovery Center who has many homeless patients. “We try different things depending on symptoms.” Shapiro is not convinced TBI can be separated from PTSD or fetal alcohol syndrome, and he adds, “Neuropsych testing is difficult to get these days, and a much deeper assessment can take hours. Many of the clients I have couldn’t sit for that.”

What other cities know

Cities that have done studies on how many homeless suffer from TBI report numbers that are scattered but all statistically significant: 98 percent (Hamilton, Ontario 2008-2010), 53 percent (Toronto, Ontario 2008), 67 percent (Boston, Mass. 2006-2007), 48 percent (Milwaukie, Wis. 2004), 24 percent (Fort Lauderdale, Fla. 2003) and at least 50 percent (National Healthcare for the Homeless Council). Of those, 70 percent occurred prior to becoming homeless in (Toronto), more than half occurred prior to age 20 (Boston), and the average age for the first TBI was 17 (Hamilton).

Compared to an estimated two percent of the general population that gets TBIs, “we’re seeing an enormous medical crisis,” says Dr. Theresa Petrenchik, who helped lead both the Hamilton and Fort Lauderdale studies.

Petrenchik’s research leads her to conclude that homeless people with TBI use more services, are homeless more often for longer periods of time, are more frequently incarcerated and have greater co-morbid risks than homeless people without TBI.

TBI among the homeless often overlaps, masquerades and partners with a laundry list of other ugly problems. Sexual abuse, neglect, domestic violence, substance use, family breakdown – often occurring in childhood – are just a few. When Petrenchik tallied the average number of “adverse experiences” in the case notes of the original 176 homeless men in Hamilton, she came up with 14 per person. “We find them in spades in this population,” says Petrenchik.

Just four adverse childhood experiences, according to the CDC, put someone at risk for a multitude of health and social problems. Having six or more adverse childhood experiences decreases your life expectancy by 20 years.

Dr. Stephen Hwang, leader of the Toronto study, is teaming up with Wismer and other researchers around the country to try to get funding for a national study on TBI and homelessness. San Francisco, CA, Baltimore, MD, Albuquerque, NM, Boston, MA, Cincinnati, OH, Houston, TX Orlando, FL, Los Angeles, CA, Hyannis, MA and Manchester, NH are the 10 cities they hope to survey.

“We think TBI is under-identified among the homeless,” says Wismer, “and we think a lot of health care workers don’t know about it.”

What a disability attorney knows

Cheryl Coon, board member of the Brain Injury Association of Oregon and the Social Security disability attorney who represented Smith, says she has many homeless clients with TBI. She describes a common pattern with her TBI clients: first, they stop being able to focus in the workplace. Then, they lose their jobs. Their physicians may not recognise TBI. And then many become homeless.

Chart notes follow Coon’s clients whenever they come in contact with the system and sometimes these files “come back to haunt folks,” says Coon. If a past doctor noted that a client was inebriated or high, even if that client was also diagnosed with TBI, that can be enough reason to deny them, she says. In fact, Coon thinks of TBI as a “Catch-22 for getting disability benefits” because the symptoms of TBI can be associated with so many other causes.

“The Social Security Administration is not eager to take these people on,” she says, “but disability benefits have become one of the few safety nets this country has.”

Winning Smith’s hearing was a personal victory for Coon, who says that around two-thirds of cases are initially denied in Oregon. “The number one piece of advice I give for any client is ‘you’ve got to hang in there and file for appeal,’ because the process is set up to weed out those who don’t have the perseverance to pursue it,” says Coon, who estimates that well over half of cases in Oregon are won when people keep appealing.

What a domestic violence shelter knows

Molli Mitchell, residential services director at Bradley Angle House says she “definitely” sees women coming to the shelter with TBI. In a study of 53 battered women, Dr. Helene Jackson found that nearly all reported suffering blows to the head while being battered; 40 percent reported loss of consciousness.

Mitchell and her staff are trained to recognise symptoms of TBI, but she says referring women to clinics doesn’t often work. Battered women who are candidates for TBI may have trust issues with counselors and doctors, lack of transportation to clinics, not to mention a host of competing problems. Mitchell says the link between PTSD and TBI is complex and often a fine line.

What the military knows

“TBI has become the signature injury of the current wars in Iraq and Afghanistan,” according to the Brain Trauma Foundation. About 320,000 American troops have suffered TBIs since 2001, with seven percent reporting both TBI and concurring PTSD or major depression, according to a 2008 report by nonprofit research group RAND Corporation. Blasts are the leading cause.

With its massive budget, the Department of Defense provides arguably the most cutting-edge research around TBI treatment. Eye-tracking goggles, neuroprotectants, biomarkers and hyperbaric oxygen chambers are just a few of the superhuman technologies being funded by the Pentagon to explore TBI, to varying success.

But despite funding such gadgets, the Department of Defence has been notoriously resistant towards paying for cognitive rehabilitation therapy for the tens of thousands of service members who have suffered TBIs. A 2010 NPR and ProPublica investigation found studies by the military’s health care programme, Tricare, “deeply flawed” and at odds with many medical groups. They cite the cost of cognitive rehabilitation to be as much as 50,000 dollars per soldier-a daunting figure even for the Pentagon’s budget.

How many end up homeless? The Department of Veterans Affairs conservatively estimates that 107,000 veterans are homeless on any given night, and that nearly one-fifth of the homeless population is veterans. PTSD, closely linked to TBI, is cited as a leading cause.

What the NFL knows

Just last year, former NFL (National Football League) doctor Ira Casson told Congress, “there is not enough … scientific evidence at present to determine whether or not repeat head impacts in professional football result in long-term brain damage.” The resulting outrage from players, doctors and sports reporters led to heightened investigations of TBI cases in pro football.

Mike Webster was one former NFL player held in the spotlight. Doctors estimated that the former Pittsburgh Steelers star’s brain had been through the equivalent of 25,000 car crashes in his 25 years of playing football. The depression and profound dementia that followed contributed to Webster becoming homeless and dying at age 50.

As TBI-affected ex-players come forward, the 33 billion dollar NFL is changing its position on TBI, albeit reluctantly. In cooperation with Boston University, the NFL opened a brain bank in 2010 to conduct post-mortem analyses of players’ brains. They donated one million dollars to help fund Boston University’s TBI research, started by a former wrestler. They announced harsher fines (tens of thousands of dollars) for players who tackle above the neck. They explored advanced helmet technology.

High school sports (and the PTAs behind them) seem to be making the true groundbreaking steps on TBI. Oregon enacted “Max’s Law” in 2009 – legislation that protects young athletes from damaging multiple concussions by requiring that all high school athletic coaches in the state receive concussion recognition training. It also prohibits any athlete showing concussion symptoms from playing until the next day.

The silent disease

All of the above candidates for TBI – homeless people, domestic violence victims, soldiers and pro football players – are also conditioned to be silent about TBI.

Thirty of 160 NFL players surveyed by The Associate Press in 2009 said they had hidden or played down the effects of a concussion. “By the time a guy reaches pro sports, he will not complain,” says Jane Arnett, wife of ex-player John Arnett in Lake Oswego. Together, the couple founded a nonprofit to help disabled ex-NFL players get health benefits.

A similar hush factor pervades the military. The 2010 NPR/ProPublica investigation found that, to remain with their unit, soldiers will often ignore symptoms of a blast and commanders might ignore such symptoms in order to keep soldiers on the field. Medics, forced to prioritise life-threatening injuries, may lack the time to recognise a concussion, the study adds.

Homeless people and domestic violence victims know silence better than anyone – lack of trust, resources and support prevent many from seeking help. Stigma certainly plays a role. And a 2007 study of homeless people in Denver found that homeless individuals are less than half as likely to be admitted to a hospital as non-homeless with similar conditions.

A 2008 report by The National Health Care for the Homeless Council said the following:

Many emergency departments have yet to implement screening and referral for (TBIs). As a result, many patients who are treated and released from ERs with instructions to follow up only if they experience dizziness, vomiting or difficulty waking may be experiencing cognitive changes that may never be evaluated. This is a widespread phenomenon and may explain the poor functioning of some persons who fall into homelessness without clear abuse or neglect histories.

What Portland knows

Dr. Paul Lewis is partnering with Street Roots to start a pilot project to track vital records and cause of death among homeless Portlanders. The deputy health officer for Clackamas, Multnomah and Washington counties says that as far as he knows, it’s never been done before, and he wouldn’t be surprised if accident injury was a major cause of death. “(Addressing TBI) is really an upstream problem,” says Lewis.

Diane Malbin of the Portland nonprofit FASCETS leads training sessions for parents and professionals on rethinking cognitive disabilities. Malbin believes that teaching people who work with the homeless to recognise the link between brain function and behaviour is crucial, and you don’t need a PhD to do it. “Addressing neurological issues will give us the toehold we need to tackle so many other social problems,” says Malbin.

… And doesn’t know

“Some cities don’t want to survey for TBI because then you might uncover a real service need,” says Petrenchik. “When we talk about the intersection of social services and health services, no one wants to hear about the need for long-term support … but we pay for it one way or the other.”

“Being able to recognise that there is a true disability as opposed to willful noncooperation is helpful,” says Hwang. “It’s worth investigating.”

“Who’s keeping track of TBIs?” says Coon. “Nobody.”

* Published under an agreement with Street News Service.

You might say Nick Patton was born to fish. Literally born on a boat, Nick spent his earliest years living in orphanages along the Alaskan coastline. He ran away at the age of eight and quickly learned how to take care of himself and to rely on others – traveling in groups around the Pacific Northwest, picking apples and doing day labour.

Traumatic brain injuries often go undiagnosed, especially on the streets. Credit: Street Roots

He was only 11 years old when he started working on the boats and canneries of the Alaskan fishing industry. With a community of other fisherman, Nick followed the seasonal work, living on boats and in tents, even during the cold Anchorage winters. It all ended with the smack of a crowbar.

Nick was 32 and alone on the night he was attacked, and there were no witnesses. With no memory of the assault, he has few clues to the story except for the scar on his forehead where the crowbar cracked his skull.

“First it hurt the front of my brain, because that’s where they hit me. Then, the force caused my brain to hit the back of my skull, back here. Then, there was also some swelling, so that caused more damage – way down here in my brain stem.”

Nick woke up in an Anchorage hospital, but nothing was ever the same. His gregarious nature was now drowned out by voices and hallucinations, and reality was lost in the din.

“I couldn’t deal with society anymore. I didn’t know what was real or who to trust. I ended up cutting all ties to the world.” Alcohol and drugs became his only way of coping. “If I stayed high I could deal with it.”

For the first time in his life, Nick found himself unable to work and spent the next several years selling heroin, panhandling, and living on the streets.

Unfortunately, Nick’s story isn’t unique.

News about traumatic brain injury, or TBI, has increasingly come to light in recent months, from a spate of sports-related injuries particularly among football players, to the blast injuries of veterans returning from Afghanistan and Iraq. Although, homelessness can be the ultimate tragic consequence of a brain injury, the medical world is only beginning to connect the dots between TBI and homelessness.

Head injury hits half of the homeless

According to the National Healthcare for the Homeless Council, at least half of all homeless individuals have experienced at least one head injury in their lifetime.

“Brain injury in the homeless community is a very common thing that we’re just starting to learn about,” says Dr. Barb Wismer, a practicing physician who serves on the board of the Council. Few formal studies have been done, but those few are sobering.

In one recent study of 904 homeless men and women in Toronto, Ontario, 53 percent reported some type of traumatic brain injury. Studies in Milwaukee, Wisconsin and Boston, Massachusetts offer similar statistics of 48 and 67 percent.

The Toronto study found that for those who had experienced a head injury, 70 percent had suffered the injury prior to becoming homeless. And although there is no clear cause and effect, the results suggest that TBI could be at least one contributor to some individuals’ homelessness.

That shouldn’t be so surprising, as the long-term effects of a brain injury can be debilitating. Symptoms vary widely. Some are as dramatic as Nick’s hallucinations.

Others are much more subtle. Sometimes described as an “invisible disability,” brain injury often causes problems with memory, concentration and thinking, as well as the ability to regulate emotion and behaviour.

As a result, brain injury survivors often have a hard time doing the work they did before their injuries. Family and social relationships suffer, straining the most immediate safety net before homelessness.

The same symptoms can also create barriers for those individuals once they are on the streets. Navigating shelter systems, attending to basic health and hygiene, and accessing services can be overwhelming and difficult. Controlling anger can be a daily struggle.

And once on the streets, the risk of brain injury continues. Steve Hill suffered head injuries throughout his adolescence and adulthood, from sports injuries to snow boarding to fight clubs. He describes each one as taking him down another notch. Even small injuries caused intense reactions including vomiting and confusion. “You’re more edgy when you’re homeless,” Hill said. “And you’re closer to violence when you’re on the streets.”

One of TBI’s biggest dangers is that it often goes unrecognised. People with TBI often don’t connect their symptoms with previous head injuries, and many health care providers, mental health workers, and case managers don’t either.

Some brain injury survivors have a hard time remembering appointments, following instructions or taking medications. They may have a hard time organising their thoughts, finding the right words, or picking up on social cues. As a consequence, these clients might be labeled as disinterested, rude, or non-compliant.

Or they may be misdiagnosed. Symptoms of TBI can also look a lot like major mental illness, emotional trauma, or drug and alcohol abuse. And these conditions often co-exist and exacerbate one another. Distinguishing between them can be difficult.

This was the case for Nick Patton.

“They thought I had schizophrenia, even though the symptoms didn’t start till after the injury. And that was when I was 32” – much later than the typical onset of schizophrenia.

His doctors prescribed heavy antipsychotic medications to control his hallucinations, but that left him so sedated he couldn’t function. And it didn’t get to the root of the Nick’s problem: small seizures caused by the brain injury, left completely undiagnosed.

According to Dr. Wismer, Nick’s case is a prime example of why it’s important to identify TBI in an individual who is homeless. Treatment for TBI is often different from traditional mental illness, including differences in medications. Some psychiatric medications have little positive effect on an individual with TBI, yet can produce very harmful side effects.

A tank half full

George Dennison knows more about traumatic brain injury than most people I know. When I tell him I’m doing a story on TBI and homelessness, he says, “Oh good! Because it’s rampant out there!” He goes on to tell me about his own brain injury.

“See this water cooler? This is like brain reserve. If you’re way up here at the top, you’ve got a full tank. But I had the genetic predisposition for bipolar disorder, so that means I start off a little lower – about here. Then I go for years with it undiagnosed, so that brings me down some more. Then I smash my head into a car windshield. That one – that brings me down to here.” George’s hand is about halfway down the tank.

George wants to be clear. It’s not just the TBI. It has all taken a toll. “But TBI, mental illness, substance abuse, PTSD – they all go together like peanut butter and jelly.”

Because of its high prevalence, the National Healthcare for the Homeless Coalition recommends that homeless individuals be routinely screened for TBI during health appointments and in other service settings. For a comprehensive, standardised screen, the coalition recommends a web-based tool called the Brain Injury Screening Questionnaire. Although it only takes four minutes for the questionnaire to rule out brain injury, confirming a TBI takes about 20 minutes.

This isn’t a standard practice in Portland where busy clinics are filled with patients at risk for a whole host of health problems.

“The system isn’t set up to support a really thoughtful and complete history of complex individuals,” explains Rachel Solotaroff, Director of Old Town Clinic. Physicians have a limited amount of time and need to address each client’s most pressing health issues.

According to Solotaroff, clinicians end up using a “clinical reasoning process” to determine what type of screening might be most important for a particular client. TBI rarely makes it to the top of the list.

But given the high correlation between homelessness and brain injury, some advocates think it deserves more attention.

“We have to find a way to identify brain injury on the streets,” says Pat Murray, the Executive Director of Portland’s Brain Injury Resource Community (BISC). “When we understand that this is a physical injury, we start to look at people differently. We might need to work with them a little differently. And there may be ways to help.”

According to Murray, identifying brain injury could lead to more appropriate treatment, as well as better access to benefits and services.

Because the effects of brain injury can be disabling, some TBI survivors are eligible for Social Security disability benefits. For Nick Patton, it was a turning point in his recovery. But getting there wasn’t easy.

“Without help, I would’ve walked away. I had given up on it three times already. It would be hard for a normal person. But they make it so hard that a person who really, really needs SSI can’t do it unless they have an advocate.”

Luckily, Nick found one: Central City Concern’s BEST programme, a project that helps homeless men and women through the long and complicated disability claims process. The programme provides assistance with every step and pays for the expensive testing that’s often required. According to KascadareCauseya, BEST’s programme manager, more than half of BEST’s clients have had a TBI in their lifetime.

“I couldn’t think well enough, so they helped me fill out the paperwork,” Nick explains. “They knew what doctors to send me to and got my medical records sent from Alaska. I couldn’t remember the name of the hospital where I had my surgery, so they sent letters to every hospital in Anchorage.”

They also stuck with Nick through two denials and appeals. According to Mellani Calvin, Nick’s advocate at BEST, “the state’s disability reviewers were blaming his mental health disorder on his prior drug use. They saw him as just a drug addict who didn’t really need those (psychiatric) meds.” After four-and-a-half years, Nick finally won the claim.

The medical benefits started first, which gave Nick access to new doctors. And when the monthly cash benefits kicked in, he was able to afford the co-pay to see a new doctor – one who got to the root of Nick’s hallucinations.

Measurements of electrical activity in his brain confirmed that Nick was having small seizures – a direct result of his brain injury. Now, finally, an anti-seizure medication is helping to control the voices and hallucinations. The medication has been a critical piece of Nick’s recovery.

The importance of a good night sleep

Brain injury comes in all shapes and sizes and so does recovery. A lot depends on the location and extent of the damage. Mild TBIs may take just a short time to heal completely, while a severe injury may heal very slowly or cause permanent damage. In most cases, the underlying idea is the same – to rest the brain as much as possible while it takes time to heal.

If you suffer a brain injury, you’ll probably be advised to get plenty of sleep, limit sensory stimulation, and eliminate stressors. You’ll be encouraged to drink plenty of water, eat well, and avoid anything that might cause another injury – all relatively minor adjustments for most people. But for people without a home, they are virtually impossible.

“If you’re homeless you’re always living in this ultra-aware state. There’s no way to relax,” explains Brad Taylor, an outreach worker with JOIN. In the world of homelessness there is no place to rest or to get a full night’s sleep. And waking time is taxing.

Which is why Dr. Wismer sees housing as the first real step in recovery for many who are homeless – specifically, permanent supportive housing with nurses, case managers, and social workers. For some brain injury survivors, a new permanent supportive housing facility in Portland may come close.

The Housing Authority of Portland (HAP) is preparing to open the Bud Clark Commons – Portland’s new access centre that will also provide 130 units of permanent supportive housing.

For the first time in Portland, these units won’t be offered on a first-come, first-served basis. Instead, the Commons will offer housing to those they consider the most vulnerable. And that will include individuals who experience memory attention, organisation, social skills and anger management, all areas that can be directly affected by a brain injury.

Although the model is controversial, it could offer vital support for those recovering from brain injury. It also indicates a growing awareness of cognitive functioning and the important role it plays in a person’s ability to care for him- or her-self – especially amid the chaotic, deficient, and often dangerous circumstances of the streets.

According to Pat Murray, we still have a lot of work to do, and it needs to start with information. “Awareness has to happen first. And that awareness needs to start with those who serve homeless individuals.”

She offers Brain Injury Support Community as a resource to these providers. “We want to work together with people serving the homeless community – to help those who have already fallen through the cracks.”

And, she says, the time is right. “We have a real opportunity right now – brain injury is in the media and research is catching up with the reality. We’re just getting a lot smarter about brain injury.”

Nick Patton is living proof that with the right diagnosis, the right support, and a committed advocate, life can get better, even if it never goes back to normal.

Even 10 years on, Nick still feels the effects of his attack. Although the medications have helped dramatically, he still hears voices. But now he knows that they’re just voices and that they’re caused by the injury – he doesn’t have to listen to them. He can trust people again.

He also still struggles with some of the signature symptoms of brain injury – including memory and concentration. “It’s hard to keep my thoughts together. I can’t really read anymore – and if I do, I can’t remember it five minutes later.”

He says he’d like to go to school to be a case worker, to offer the same kind of support he’s gotten from others. But he knows it’s not in the cards. He says it would just be too much; to do the coursework needed to get the certificate.

But he’s learned to be happy again and to work around his symptoms. He sets his phone to remind him of appointments and tries not to promise that he’ll be somewhere on time. Social security covers his basic expenses. “I actually like paying my bills now. It makes me feel normal.”

But most importantly, Nick goes fishing. As often as he can, he goes out with a group of guys from AA to hit the best fishing spots in the city. It’s something he knows by heart – something the brain injury can’t take away from him.

* Published under an agreement with Street News Service