October 2011

Veterans’ Disability Benefits: A Constant Maze of Confusion

The Disability Benefits Maze

John Sanders has been navigating the confusing and frustrating maze set up by the US Department of Veterans Affairs (VA) and their disabled veterans benefits since he became a quadriplegic after being shot in the back while stationed in Saigon at the age of 23. Now 65, Sanders has lived a full life despite being a person with disabilities. He’s an avid reader and can chat for hours. He goes out with his aide everyday in his specially equipped wheelchair van. His positive outlook dims only when he is met with the challenge of planning a monthly budget on his fixed income, paying his rising insurance costs, and trying to understand the complex disability benefits maze. His current dilemma is getting the money to widen his bedroom door to accommodate the new bed he got courtesy of the VA. It will cost a little over $1,200 to get it done.

Sanders could get the money from either his Home Improvement and Structural Alterations (HISA) grant, or his Specially Adapted Housing (SAH) grant–or so it may seem. If he uses funds from his SAH grant, of which he has an available $3,995, he loses the remainder for future repairs. Sanders used his lifetime $4,100 limit of his HISA grant. When the HISA grant amounts were increased to $6,800 in 2010, the increase excluded existing recipients. A spokesman for Veterans Affairs said that he was looking for another solution for Mr. Sanders, but Congress set the grants’ guidelines.

“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 (VBA).

Sanders gives the VA credit for being more helpful in recent years, however, his earlier experiences has left him dreading every time he has to deal with them. He tells of one experience in particular, when he submitted a request for voice-recognition software that would enable him to do everything from controlling his thermostat and lights to writing letters to friends and family. At the time, he was totally dependent on his mother. A criteria for approval was that the software would improve his quality of life.

He was flabbergasted when, after interviewing with a psychologist at the VA office, he received a denial letter, which stated: “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 angrily. “How was I independent?”

In response to hearing Sanders’ rejection letter, Pamperin stated, “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.”

Sanders finally got the software after numerous appeals and some help from a paraplegic friend who worked for the Paralyzed Veterans of America. “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?”

The Disability Benefits Maze

When he’s not trying to unravel the disability benefits puzzle, Sanders’ juggles his monthly expenses. Most of his disability check goes toward his care. He pays two aides and has to pay for fuel and maintenance for his van and house. Then there are electric bills that are as high as $350 a month. His sister and brother-in-law live with him rent-free to help out after the aides leave. However, he is still haunted by a financially difficult year in 1998 after his mother’s death when he needed to hire a live-in aide for around-the-clock care.

Then there’s his homeowner’s insurance. His yearly premium increased from $2,980 in 2010 to his current premium of $3,150, which is at least still less than the $3,700 high he paid in 2009. Steep insurance costs are nothing new for Florida homeowners, but Sanders feels the crunch because his disability checks have not been adjusted. A USAA insurance representative reviewed his homeowner’s policy and discovered some erroneously listed items that, once adjusted, would reduce his premium by $500. Sanders’ previous carrier dropped him in 2010, and he felt he’d better stay with his current state-supported insurer or risk being dropped again, despite the potential savings.

For this most recent home renovation to make his bedroom doorway more accessible, he will likely have to sacrifice the remaining money in the SAH grant–that is, unless he can find something else that needs repair for the remainder of the funds and can be approved at the same time.

Sanders realized a long time ago that he must stay on top of his finances and the benefits system in order to stay ahead of the game. “I don’t see how anyone could do anything else,” he said. ”There is no other option.”



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Power Struggles as Insurers Delay Power Wheelchair Approvals

Insurers Slow to Approve Power Wheelchairs

Insurers and Medicare are increasingly delaying and denying requests for more expensive and customized power wheelchairs, placing fraud prevention and cost cutting above improving the quality of life for persons with disabilities. As a result, patients are often forced to settle for lesser chairs that don’t adequately meet their needs or be confined to bed while waiting months–or longer–for an appeal decision.

Sometimes that wait can be tragically too long. Nexus Medical technology professional called an amyotrophic lateral sclerosis (ALS) patient to give her the news that her request for a new chair had been approved–after months of battling with her insurer–only to be told by her son that she had passed away.

Fortunately for 27-year-old Samantha Lorey, she did get her power wheelchair approved before it was too late, but only after 3 appeals and many months of denials. Lorey has spinal muscular atrophy, a disease that progressively causes muscle weakness and degeneration and death. According to doctors, Lorey shouldn’t have made it past the age of 2, yet she lived long enough to now need the third wheelchair in her life–a powerchair that can aid her in attempts to keep her mobility, despite her disease’s progression of immobilizing her. At this point, she can move her hands just enough to maneuver her a motorized wheelchair, but she can’t raise them if her arms fall in her lap, and she cannot move her legs at all.

To say that time is precious in Lorey’s life is an understatement, a concept that her insurance company never seemed to grasp. Lorey’s condition had deteriorated severely in the time it took to get approved and fitted for her current power wheelchair. It had become too painful to sit in her old chair, which was falling apart. She required more support to sit upright. She attended her third appeal hearing on a windy day she feared would harm her fragile lungs.

“They went through every nut and bolt on this chair,” according to Lorey’s mother of their third appeal. A few days later, Lorey’s request was approved, and the long ordeal was over, but the entire experience left Lorey drained and frustrated.

“We had all the documents in order,” she said. “It’s like they didn’t even look at it. They denied it to deny it.”

Insurers dispute patients’ claims that denial rates are higher than ever, insisting that they merely are doing what they have to do in order to curb fraud and make sure money is spent wisely. One insurer told the Philadelphia Inquirer that they denied only 38 claims for power wheelchairs in 2010, a denial rate he considered “fleetingly small.” A spokesperson for Lorey’s insurer, who refused to discuss her case, also defends insurers, saying that it can be difficult to determine what accessories and equipment requests are “medically necessary.”

Medicare Power Wheelchair Claims

Insurers claim it’s not personal; they are simply looking out for the bottom line. Power wheelchairs can cost more than $17,000, and the total amount of insurance funding for motorized chairs increased from $59 million to over a billion in 2003, at which time the government began to crack down on fraud. Medicare’s motorized wheelchair spending steadily decreased to $728 million in 2010, with another $300 million spent on manual wheelchairs. A Medicare official said the crackdown was necessary to curb “significant over-utilization.” Now Medicare limits funding to wheelchairs a patient can use in their homes, not the more complex ones that can improve quality of life and enable a person with disabilities to go work or go to school. Private insurers are following Medicare’s lead.

The people who are involved in submitting claims tell a different story, however. One occupational therapist said she spends almost 40 percent of her time writing appeals, more than she ever did in her 20-year career. Another physical therapist shared similar experiences, averring that insurers have made it difficult for people to get equipment they truly need. She said that she never submits a claim unless she’s certain the patient qualifies, saying she believes none of the claims should be denied.



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Amputee Golfers Among the Best in the World

Amputee Golfer Bob McDermott

In 2007, Golf Magazine named Canadian golfer Bob MacDermott the “World’s Most Amazing Golfer.” MacDermott and other equally talented amputee golfers from around the world recently got to show their stuff at the 63rd Annual National Amputee & Senior Golf Championship in Rio Verde, Arizona, sponsored by the National Amputee Golf Association (NAGA).

MacDermott settles on his prosthetic left leg, grips his club with his right hand that misses a thumb and takes a shot onto the green with the assistance of his prosthetic left arm before addressing the reporter. A day in August 1987 started out relatively well. MacDermott decided to harvest wheat with his father instead of going to a local golf tournament. He overestimated the distance between his tractor and a power pole and took it out with the cultivator. He then made a couple of bad moves that resulted in all 14,500 volts of electricity entering his hand, traveling down and out of his body through his feet.

During the 80 mph ambulance ride to the hospital, a tire blew out and sent the ambulance hurtling into a field, tossing MacDermott out the back doors and into his new life as an amputee. Because of the trauma and critical loss of time before treatment, his injuries were going septic, and he faced an ultimatum: his life or his limbs. Golf became his therapy to deal with the aftermath.

“It was either my limbs or my life. But I never lost a year of golf,” says MacDermott. “Golf became an addiction. It’s been therapy. It helps you keep your sanity when you’re trying to overcome some things. These are just opportunities to test yourself.”

One of MacDermont’s competitors, Dr. Lucian Newman, III, was a seven-time tournament champion in his hometown of Alabama until his left arm was blown off at the elbow during a hunting accident. A general surgeon, Newman returned to check on his patients 10 days after his accident and still handles a full case load. Determined not to let anything stop him from doing what he loved, Newman returned to the golf course with a prosthetic device and competed against the “normies.” He finished second.

Amputee Golfer Lucian Newman

“Golf’s harder than surgery,” reveals Newman. A crushing drive down the center of the fairway proves that he successfully masters both.

Unlike MacDermott and Newman, Mike Carver is a lifelong amputee. The Holcomb, Mississippi resident was born with a short stump where his right arm should be, he has a prosthetic instead of a right leg, and a left hand with only a thumb and two fingers that were surgically separated.

Amputee Golfer Mike Carver

“You never miss things you never had,” Carver says. “But growing up, I was never treated any differently.”

Carver is right-handed, yet he executes powerful tee shots with his left hand in a tennis backhand fashion. He proudly boasts that his strength is in his short game.

The tournament also included some working golf professionals like Kimberly Moore. She may have been born without a right foot, but that did not stop her from becoming part of the LPGA Futures Tour, as well as leaving all the ladies in the National Amputee & Seniors Golf Championship in her dust for eight years in a row.

Amputee Golfer Kimberly Moore

“Everybody treated me the same,” explains Moore of her competitive childhood. “I usually was the only one out there like that (disabled), but it was pretty normal to me.”

Another contender at the tournament, Kevin Valentine was helping a woman with a flat tire when he was hit by a car almost fourteen years ago. He later awakened in a hospital and overhead his wife talking to the doctor about someone who was about to lose a leg. He felt sorry for the guy, not realizing he was the guy they were talking about. Valentine’s golf game is as good as it was when he played in college, but his perspective will never be the same. He says he’s more compassionate in general, but less compassionate toward people who make a big deal of out things that aren’t important.

The golfers all come to the course to play and play hard. Players who lost an arm are not about to go easy on players who lost a leg. No matter how they became amputees, the golfers all share one mantra: humor is not a crutch; it’s a way of life around the golf course and “19th hole.”

For anyone interested in golfing from a wheelchair, our story about the ‘Paragolfer’ Wheelchair Designed for Golf might be of interest.





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