For veterans in rural areas, care hard to reach

NORTHEAST KINGDOM, Vt. -- A cold March rain had washed out the dirt road that winds up the hill past his small farm, so Fred Swallow left the Dodge pickup with a Purple Heart emblem in the back window at the foot of the drive and walked the rest of the way.

He was tired and frustrated, but it was much more than that. The steep road isn't only his way into town. It is his lifeline.

He had just returned from a four-hour round trip drive to the nearest veterans hospital for treatment of wounds sustained in Iraq. It was the latest, draining stage in a battle he and his wife, Doreen, have been waging with the sprawling bureaucracy of the federal Department of Veterans Affairs to get the care he, like all veterans, had been promised.

But in rural America, as he and many across the nation have found, it is a promise often unkept.

The VA is struggling and often failing to do right by the many veterans with serious combat injuries who need closely supervised care but live in remote areas, a Globe review has found. Realigned in the 1990s to concentrate specialized care in urban areas, the system now finds itself overwhelmed by the wounded from wars in Iraq and Afghanistan -- engagements that have, even more than other modern-day conflicts, been fought by soldiers from rural America.

Interviews with dozens of wounded vet erans who live in hill towns and farm country across America found story after story much like Swallow's. The system that provides the hospital care most wounded soldiers praise has, for many of the nation's 6 million rural veterans, no adequate equivalent once they leave the service.

Many say they must scramble in all directions to get the care they require. A lack of coordination between the military and the VA too often results in delayed treatment, lost records, and bureaucratic battles. The military insurance system, known as TRICARE , has gaps that can leave them without effective coverage. And the federal community health centers that serve rural areas often do not accept VA payments.

Veterans also complain that medications that must be mailed to them sometimes never arrive. And, most important, the continuity and management of long-term care is often undermined by the sheer distances involved.

"The VA by necessity has tended to put its resources in high-density populations centers even though the veterans of this war with the greatest needs are in rural areas," said William Weeks, a VA health services researcher in Vermont. "It has caused a unique challenge in this war."

The bottom line, according to Weeks: "Veterans who live in rural settings have worse healthcare and have greater healthcare needs."

Swallow's challenge has been to hold himself together. From the day he left the military hospital system, where he says his care was superb, he has felt lost.

"You just walk out one day," he said, referring to his discharge from military hospital care, "and then there is nothing there, no one around to help you figure all this out. . . . If it wasn't for my wife, I'd be in an institution."

Swallow, serving as a specialist with the Army's 744th Transportation Company, was injured in 2004 near Balad when a roadside bomb blew him from the machine-gun turret of his armored Humvee. He sustained arm and neck injuries and lost seven teeth. Knocked unconscious, he was later diagnosed with traumatic brain injury, one of the most common wounds in a war largely defined by random bomb attacks. Blast waves that batter brain tissue have left thousands of soldiers suffering from disorientation, dizziness, uncontrollable emotions and, often, severe depression.

For Swallow, 43, it is all of the above.

A hollow look crossed his face as he remembered the day he was injured, and his eyes welled up.

"Sorry," he said. "Give me a minute here."

The animals in his barn seemed to sense that something was amiss. A puppy moved to lick his hand; a cluster of cows shifted nervously.

His trip that day to the hospital in White River Junction -- the only veteran's hospital in Vermont -- came after three laborious months of trying to arrange a program of care.

He had needed help in a hurry because he had run out of his medications for anxiety and depression -- his prescription had failed to arrive at the post office box in his hometown not far from the Canadian border. (To preserve his privacy, he asked that the town not be named.)

Swallow is 100 percent disabled by his injuries and spent 16 months in the Walter Reed Army Medical Center near Washington, D.C., and several more months in what is known as a "medical hold" facility at Hanscom Air Base in Massachusetts.

After he was honorably discharged from the Army and released from Hanscom, the quality of his care rapidly deteriorated.

His case, and his medical records, fell through the cracks somewhere between the Department of Defense and the VA, Swallow said. The paperwork seemed endless and the process of registering within the VA system proved maddening, in part because some basic records were hard to pry out of the military.

The bureaucratic problems were exacerbated by how far Swallow needed to travel -- about 70 miles each way -- to get to a VA center and straighten matters out. (The average distance for rural veterans to get care is 63 miles, according to the National Rural Health Association).

For months, Swallow didn't receive the cognitive therapy he needed. His condition slipped noticeably.

The VA doesn't "tell you what you are entitled to; it's like they just let you figure it out. And if you don't know, you get the feeling they are OK with that because they don't really have enough people to help everyone anyway," Swallow said.

Traumatic brain injury is a complex wound best treated with regular MRI and CT scans of the brain as well as a precise and individually designed regimen of medication and cognitive therapy, according to Dr. E. Lanier Summerall, a VA research fellow and specialist on the injuries who is working with the Vermont VA.

It is also devastatingly common. The injuries account for 25 percent of the 26,000 combat casualties in Iraq and Afghanistan, according to recent testimony in Congress by Jonathan Perlin, the VA's under secretary for health.

Other estimates are much higher. Research at three major military facilities, Camps Pendleton in California, Fort Bragg in North Carolina and Fort Hood in Texas, suggests that 10 to 20 percent of all returning soldiers from Iraq and Afghanistan suffer from some level of traumatic brain injury, which presents a spectrum of symptoms that range from mild and treatable to severe and long lasting. With 1.5 million troops serving in Iraq and Afghanistan, that means the number of those with traumatic brain injuries could eventually run as high as 150,000 to 300,000.

"If I'm having this problem, there must be thousands of guys just like me with the same problems," Swallow said, referring to the difficulties he has faced in navigating care for his injury.

The veterans system is only now scrambling to catch up to the immense challenge of detecting and treating traumatic brain injuries. On April 2, the VA announced mandatory screening for the injuries among all returning troops and it plans to add 21 care centers for such injuries across the country, including one in Vermont that will feature a mobile unit designed to take expert care deep into the countryside.

"It is a very daunting problem," Summerall said. "I hope we can get things organized quickly and work toward solutions."

Some states, such as Vermont, have recognized the need to reach out to those in need of treatment for traumatic brain injuries and other service-related health troubles. The VA and the state's two Vet Centers -- storefront counseling centers that operate under the umbrella of the VA -- are coordinating with a network of families and clergy and representatives of the National Guard to find veterans who have dropped out of the system.

Travis Jones, an Iraq war veteran who was recently hired by the Vet Center in White River Junction, Vt., has been traversing the northern parts of the state looking for those who need help. He hands out fliers in National Guard armories and responds to tips.

"We know they are out there. We know this is a problem we need to work on. But the question is, how do you find them?" asked Jones.

He and the head of the Vet Center, David Frantz, concede that the effort is too new to have dented the problem. Frantz, a Vietnam veteran who has struggled with post-traumatic stress disorder, said a big part of the problem is getting new veterans to set aside the stigma attached to mental health issues and to overcome negative stereotypes about the VA.

The outreach effort is sincere, but several years late, such critics as Steve Robinson of the Veterans for America say.

"We've been shouting about this for years. You only have to travel out into the farm towns of any state in the union and you see lots of veterans who need help and are having a hard time finding it," said Robinson, the director of veterans affairs for the Washington-based advocacy group.

There is evidence the VA has known for some time about the need to focus more on rural care. A 2004 VA study of 750,000 veterans found that those living in rural areas tended to have more serious and costly health problems than their urban counterparts.

And research by the National Rural Health Association underscores the need. The association found that about 44 percent of service recruits have come from rural areas whose population comprises 19 percent of Americans. The disparity was far less during World War II and the Vietnam War, when the country imposed the draft and more evenly spread the call to service.

William O'Hare, a visiting fellow at Carsey Institute at the University of New Hampshire, said that while many in rural areas enlist for patriotic reasons, the lack of jobs also plays a major role.

"The inequitable distribution of opportunities in this country has real ramifications for rural families who are seeing their sons and daughters go off to war," he said.

The needs of rural veterans and their families are a crucial area for further research, he added, but the VA and military have resisted releasing data comparing urban and rural casualty rates.

"We have been trying to get that from the military, and they have been resistant to provide it. Given the mood of the country about the war in Iraq, I guess the feeling seems to be the less publicity the better," he said.

Veterans speak to him of many problems and many needs, but he has noted a common thread -- in case after case, veterans cite the maddening complexity of the veterans care system as a major foe.

There is, Hall said, a disconnect between the military and the VA computer systems that can confound efforts to coordinate treatment, or even to simply identify those veterans living in areas far from the VA hospital centers.

And the military, citing privacy concerns, has been unwilling to provide the VA with a list of service personnel and their addresses, Hall said.

The VA distributes registration forms known the "10-10 EZ" to soldiers in returning units. But the burden is on the soldiers to fill out the paperwork and get it back to the VA. The form, Hall says, is anything but "EZ" to complete and requires data on insurance history and past medical conditions that many demobilizing soldiers don't have handy.

The result is that many soldiers fail to fill out the forms promptly or fully, Hall said. Most are in a rush to get home to families and loved ones and don't take the time. After discharge, veterans living in urban areas find it relatively easy to register because VA medical centers are closer. Rural veterans most commonly wind up unenrolled.

"The DOD [Department of Defense] and VA call it [the demobilization process] the 'seamless transition,' but the truth is it isn't seamless," Hall said. "It has problems and it needs a lot of work. We need to do better."

Veterans who eventually connect with the VA benefit from one of the best patient tracking systems of any healthcare organization in the country, VA officials point out.

But, as Hall put it, "if you don't exist on the computer, you don't exist."

A VA spokesman did not comment on specific criticisms by rural veterans and their advocates. But a report issued April 19 by Veterans Affairs Secretary R. James Nicholson called for better "case management" for returning soldiers and improvements to the VA enrollment process.

Another common complaint among veterans is that rural medical care providers, tired of the paperwork and long delays involved in the federal benefit system, often do not accept TRICARE, the military's health insurance for active-duty soldiers and their families. The program offers a 180-day transitional benefit for soldiers after discharge.

Coverage in those first six months is particularly important for those with PTSD or traumatic brain injuries, Hall said, because that is when symptoms of those conditions commonly appear. After TRICARE runs out, veterans rely on either their private care insurance, for those who can afford such policies, or the VA.

Captain Paul Stafford of the Vermont National Guard is one veteran who struggled with the TRICARE system.

A native of Newport, Vt., he attended Norwich Military Academy and, in April 2005, was sent with his National Guard unit to Afghanistan's Helmand Province, where fighting against the Taliban and insurgents has been particularly intense.

On June 1, 2006, a Toyota Corolla packed with explosives detonated near his convoy. He suffered facial burns, shrapnel wounds, neck injuries and, he believes, a concussion, although it is not listed on the field report of the attack.

Only at the time of his discharge did his symptoms -- depression, memory loss, dizziness -- really emerge. He faced a choice: Go to a "medical hold" facility at Fort Stewart, Ga., where his demobilizing Vermont guard unit was posted, or go home to the family he hadn't seen for a year and a half and see his TRICARE benefit run out.

He went to Fort Stewart for treatment. When he finally got home earlier this year, he sank into more severe depression. He was assigned a case manager to help him navigate the VA system and find facilities that would take TRICARE insurance.

That search would take him all over the region as he sought specialists for each of his injuries. In one week this winter, he traveled from his home to Boston for a six-hour evaluation for traumatic brain injury, then to a plastic surgeon in Portsmouth, N.H., a neurologist near Hanover, N.H., and an ear specialist in Peterborough, N.H. The week of travel, and the accompanying paperwork, left him at the breaking point.

"The guideline [for TRICARE] is that you don't travel more than 50 miles. . . . But when you have multiple injuries like I do, you end up driving in all these different directions, especially if you live in a rural area," he said. "It's just so complicated. They don't make it easy. . . . And then they make you feel like a nuisance if you fight for better care."

Veterans across the country offer similar accounts.

Kevin Owsley, 46, a sergeant in the US Army Reserve from Fremont , Ind., suffered damage to his knees, back, and ankle -- and to his mind -- when a blast from a rocket-propelled grenade threw him 50 feet.

His injuries didn't initially seem severe and he was not medically discharged. But once home, he was diagnosed with PTSD and has been unable to return to his factory job assembling tractor axles. The work in such rural areas as Fremont is mostly physical, farming and factory jobs. So for rural veterans whose physical capacity is limited, there are very few options for employment.

As Owsley put it, he "is 100 percent out of work" because of his injury but receiving only a 40 percent disability check for $538 per month from the VA.

Despairing of the care he was receiving in Indiana, he accepted the recommendation of an Army officer who took at interest in his case, and he moved to Minnesota, where the VA diagnosed him with a traumatic brain injury. He is waiting to determine whether the VA will increase his disability to 100 percent as a result of the diagnosis. He has three children, including one who is attending college.

"It's real hard to get the care you need. You have to fight for everything. And if you live out in the countryside, you don't stand a chance," he said. "Out here in the middle of nowhere, you might as well just give up trying."

Swallow, for one, chose Vermont as a place to "hide out," as he put it, after his service. The bustle of life in the Worcester area, where he lived most of his life, was too much for him.

Unable to return to the $50,000 a year job he had held as a diesel technician because of diminished physical and mental capacity, he now lives with his wife on a $2,600 monthly disability check. She quit her job so as to be free to drive him to his many appointments, and now works from home.

They are barely holding on. Swallow isn't one to complain, and he knows the road to healing will be long. He also knows that the VA should be doing better by veterans like him.

"I'm sorry if I sound bitter," said Swallow, picking up a shovel to resume his chores. "We got hurt over there fighting for the country. I think they could do more."

Charles Sennott can be reached at sennott@globe.com