Disabled Vietnam vet navigates modern VA benefits maze

From The NY Times:

PALM HARBOR, Fla. -- John Sanders (pictured) lives in a tidy bungalow in this former fishing village north of Clearwater. His home sits on a small hill, on a street lined with cars, trucks and garages now used for storage. The house was built for him in 1978 to accommodate his wheelchair and the other things he would need to live as a quadriplegic.

Sergeant Sanders was 23 when he was paralyzed on Dec. 4, 1969, while on patrol in Cu Chi, outside Saigon, when his platoon came under heavy fire. While trying to call in a helicopter airstrike, he was shot in the back. He spent the next year in and out of military hospitals before returning to the Panama Canal Zone, where he was born, to live with his parents. When his parents took early retirement, they all moved to Florida so Mr. Sanders could get better medical care.

His life over the last four decades has been a full one. A great wit, he likes to read and talk for hours. He and his aide, Brian Disney, go out every day in his specially equipped van. Mr. Sanders’s Dalmatian mix, Savanna, expects and gets a ride around the block at those times when she is to be left behind.

His outlook was formed early by a conversation with a paraplegic man at the Cleveland Veterans Administration Hospital after his injury. “I said, this is going to be our fate?” Mr. Sanders recalled. “What are we going to do?”

“The best we can,” the other man responded. “There’s no other option.”

Despite his positive outlook, Mr. Sanders’s financial life has been punctuated by struggles to understand the disability benefits he depends on and to budget, while on a fixed income, for unpredictable and high insurance costs in Florida.

Heath Whetsel, a financial adviser at USAA, the financial services company for military families, agreed to look over Mr. Sanders’s finances. A disabled veteran of Army service from 1995 to 2000, Mr. Whetsel has his own stories about being denied benefits and getting them only after appealing or working through another bureaucrat.

One thing their experiences can teach disabled veterans returning from Afghanistan and Iraq is to never give up if they are turned down for something.

Mr. Sanders, now 65, has three primary financial concerns: understanding the labyrinthine benefits process, managing the cash flow from his disability checks and contending with the rising cost of home insurance in Florida.

The Veterans Administration, he said, has become more helpful in the last few years, but he is still troubled by previous experiences, and that affects how he approaches current concerns.

His worst experience, he said, came in 1997 when he applied for voice-recognition software that would allow him to do everything from writing letters to friends to controlling the lights and thermostat in his room. Until that point he had to rely on his mother for everything. One criterion for receiving the software was that it would improve a person’s quality of life.

After an interview with a counseling psychologist at the local V.A. office, Mr. Sanders received a letter, which he showed to The New York Times, that said: “You are currently independent and the requested equipment is not seen to significantly increase your independence or decrease your dependence within the family and community.”

“I couldn’t believe it,” he said, growing angry as he told the story. “How was I independent?”

After more than a year of appeals and help from a paraplegic friend who worked for the Paralyzed Veterans of America, he got the software.

“Those first six months, it was like, ‘I’m back in the game,’ ” he said. “I wrote letter after letter to everyone. After several months, my brother said, ‘Have you ever heard of e-mail? ”

Currently, Mr. Sanders is worried about finding the benefit money to widen his bedroom door. Three years ago, he got his first new bed in 37 years, which the V.A. bought for him. But it does not fit through his door. His sister, who lives with him, said she would not be able to roll him out of the house if there were a fire.

The cost to widen the door is $1,250, and at first glance it appears that he has more than that amount available to him through two grant programs. The problem is how those programs operate. Through one, which is meant for larger jobs to adapt homes for disabled vets, he has $3,995 left. Yet, if he pays for the door through that fund, he will lose the remaining money for future repairs.

Another fund, meant for home improvements and structural alterations, allows veterans to take out smaller amounts over time. Mr. Sanders had used his lifetime limit of $4,100, and when that grant was increased last year to $6,800, the increase applied only to people applying for disability, not for recipients already in the program.

“It looks from the history of this thing that Mr. Sanders has gotten every benefit he has ever asked for and gotten them very quickly,” said Tom Pamperin, deputy under secretary for disability assistance at the Veterans Benefits Administration.

When read Mr. Sanders’s rejection letter about the voice-recognition software, Mr. Pamperin said: “In a perfect world things like that wouldn’t happen. You have people who are trying to do the best job possible, and they make judgment calls about things. I’m sure that seemed like a reasonable assessment to that clinician.”

In Mr. Sanders’s case, he is likely to have to sacrifice the remaining money in the grant from the first program to get his door widened — unless he can find something else that needs repair and can be done at the same time.

A spokesman for the Department of Veterans Affairs said that it was looking for another solution for Mr. Sanders but that the guidelines for the two programs were set by Congress.

Mr. Sanders’s other concern is cash flow. He spends almost all of his disability check to pay for his care. Mr. Disney works for him Monday to Friday from 8:30 a.m. to 5:30 p.m., and Mr. Sanders pays a second aide to work the same hours on Saturday and Sunday. He also has to cover the fuel and any repairs to his van, as well as upkeep on his house and an electricity bill that often tops $350 a month.

For the last decade, his sister and brother-in-law have lived with him to help after his aides leave. They pay no rent; in exchange, one of them is always there to care for him at night. But he is haunted by a costly and difficult year after his mother died in 1998, when he had to hire a live-in aide to be with him around the clock.

Mr. Sanders has a small amount of savings, and Mr. Whetsel talked to him about putting some portion into higher-yielding certificates of deposit or a money-market account. Mr. Sanders said the rates were so low it was not worth the trouble to split up his savings.

Then there is the guessing game of what his insurance premium will be — not to mention who will provide it. Mr. Sanders pays $3,150 for homeowner’s insurance, up from $2,980 last year but still below the nearly $3,700 he paid in 2009.

This is not a problem unique to Mr. Sanders. Every Florida homeowner in a coastal area has the same concerns. But Mr. Sanders feels pressure, because his disability check has not been adjusted for the last two years.

When Mr. Sanders spoke with a USAA insurance representative, he said, he was told the company could not provide insurance for his home because, like many other carriers, it has largely gotten out of the business in Florida.

The USAA representative did go through his current policy and found several areas of savings from items that had been listed incorrectly, which could reduce his annual premium by at least $500. Mr. Sanders was dropped by his last carrier, Security First, in 2010, so regardless of the savings, he said he thought he had to remain with Citizens, the state-supported insurer, for fear of being dropped again.

Regardless of how these financial matters are resolved, Mr. Sanders said he knew he would have to stay on top of the benefits system and his own finances.

“I don’t see how anyone could do anything else,” he said. ”There is no other option.”