Veterans’ Families Seek Aid for Caregiver Role

Veterans’ Families Seek Aid for Caregiver Role

Tracy Keil met her husband, Matt, in August 2005 between his first and second tours of duty in Iraq. They married in January 2007. Six weeks later, Staff Sergeant Keil was shot in the neck while on patrol in Ramadi, Iraq, and rendered a quadriplegic.

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Kevin Moloney for The New York Times
The Keils’ home, in Parker, Colo., was donated to them, but without her job and benefits, their expenses are mounting.
Because her husband, now 27, could no longer take care of himself, not even to get a drink of water, Mrs. Keil, 31, quit her job as an accountant to take care of him.

She tried to hire others to help her, a service that is paid for by the government, but after going through four workers in nine months she gave up. She said many of the caregivers from contractors on the government-provided list “were awful.” One did not know how to use the lift system that hoists Mr. Keil out of bed; another gossiped about the family’s private business.

But the real problem was that even the good caregivers could not help Mr. Keil live as he wanted. Regulations, for example, do not permit them to take him out of the house. “Matt is back to his old self, and we like to get out and about, go grocery shopping or a see a movie,” Mrs. Keil said. “He doesn’t want just a baby sitter.”

While she has never regretted leaving her job, the financial repercussions have been serious. Although Mr. Keil gets a full disability pension of $6,800 a month and their house in Parker, Colo., was donated to them, they have lost Mrs. Keil’s salary of $58,000 a year, as well as employer contributions to her retirement account, and her dental plan.

Mrs. Keil has joined a growing group of veterans’ families who are asking to be compensated in place of a caregiver. She sees it not only as a battle about income but also about dignity and respect.

“I am here and I take wonderful care of Matt and I enjoy it,” she said. “But he would be institutionalized without me. He is my full-time job now. I just feel like I should be compensated for that. They should value what I do.”

In the last session of Congress, families and veterans groups persuaded lawmakers to introduce legislation that, among other things, would allow families of soldiers with traumatic brain injuries to be paid for their caretaking after training and certification by the Veterans Affairs Department. The Keils think they would benefit because Mr. Keil has minor brain trauma as well. The bill did not come up for a vote but the families think it stands a better chance next year because President-elect Barack Obama has endorsed other supportive legislation and the future first lady, Michelle Obama, has said helping veterans’ families will be a priority to her.

The Veterans Affairs Department opposed the legislation, saying it would create unacceptable liability; if a veteran was injured by a family member trained by the department, it would be liable. But Paul Rieckhoff, executive director and founder of Iraq and Afghanistan Veterans of America, said families of veterans suspected that the government was not compensating them for another reason: because they know they would do the work anyway. “They are kind of being taken advantage of,” Mr. Rieckhoff said.

The question of how to best take care of a service member wounded in war is a well-worn battleground. But broader compensation for family members has become a pressing issue, veterans’ groups say, because better medical technology has allowed so many soldiers to survive with serious injuries.

In 2007, the Dole-Shalala Commission said there were 3,000 service members so severely injured that they required full-time clinical- and care-management services.

Five years into the war, “the impacts of those injuries are first being fully realized by the families today,” said Jeremy Chwat, executive vice president of the Wounded Warrior Project, an organization that is lobbying for this change.

Today’s families are less likely than those of previous generations to just accept the situation, said James B. Peake, the secretary of veterans affairs.

“When Bob Dole came home from World War II wounded,” Mr. Peake said, referring to the former Senate majority leader who lost the use of his right arm after being wounded in Italy at age 21, “his mother in Kansas quit everything she was doing and came to take care of him at the hospital, no questions asked. That’s not the case anymore,” he said. Families still race to veterans’ sides, but they are demanding more from the government.

Programs are already evolving. In the 1990s, the Veterans Affairs Department allowed family members to train with the companies under contract to provide home-health aides. Certain veterans are allowed to go through those companies to hire family members, but for only four hours a day. The department does not keep data on how many families use this program.

Families who think that program does not go far enough object to giving a third party a cut of the money, and say four hours is insignificant when they often spend 24 a day in the job. It also limits compensation to time spent on medical needs like bladder assistance and feeding, leaving out other tasks like chauffeuring and paperwork.

The sense of injustice is particularly acute for families whose loved ones are suffering from brain-related injuries and who tend to get lower levels of disability pay than those with severe visible physical ailments, like blindness or paralysis. That is the case for Ted and Sarah Wade of Chapel Hill, N.C.

Mr. Wade, now 30, was wounded in Iraq in 2004 when someone threw a homemade bomb at what Mrs. Wade describes as his “roofless, doorless, unarmored Humvee.”

He was classified as 100 percent disabled because one arm was amputated, and brain damage gave him problems with speech, memory and interpreting visual signals. When Mrs. Wade took him from the hospital she was told, she said, that he should never be out of her line of sight.

But because Mr. Wade’s needs are not of the physical variety that veterans have traditionally recognized — he can use the bathroom and feed himself, for example — the family received only $3,500 a month in pension, which includes $780 a month for an aide, or four hours of daily assistance. That does not fill all of his needs, Mrs. Wade said. Mr. Wade’s vision is so poor that he cannot cross a street by himself, his short-term memory is such that he is unsafe in a kitchen, his voice is too unclear to use the phone (even the Veterans Affairs Department sometimes hangs up on him because they cannot understand him, Mrs. Wade says), and he cannot drive himself to his numerous therapy appointments.

It also does not address the quality of his life. In February, Mr. Wade plans to attend an adaptive ski program in Colorado, and he requires someone to travel with him. He likes using his adapted bicycle to go on 30-mile rides, but requires someone to keep him safe from traffic that he cannot see.

Recently the stress of caring for Mr. Wade full time became so overwhelming that they both agreed he would temporarily go into respite care, paid for by the Veteran Affairs Department at $857 a day, or about $25,700 a month.

It is a welcome break, but makes Mrs. Wade even more determined to get compensation so she can provide more help for her husband. “What makes me mad is what I see happening to him is institutionalization,” she said, “as opposed to giving him the supports he needs for the real world.”

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The system is unfair, my wife has become my driver as I can not get a license due to my service connected problems, memory, flashbacks, etc, I can not stand long enough to cook or even shave, she can not work out of the home. She is not compensated by the government and if I die before she turns 60 she will lose the SSD payments and if I am not service connected for at least 10 years and die from a non service connected medical issue, she will lose the DIC payments she would otherwise receive. Due to my health I can not buy mortgage insurance or life insurance, the VA gave me a free 10,000 dollar policy and allowed me to purchase a 20,0000 dollar policy, how long will that last her after she pays to bury me?

The system needs major changes for totally disabled veterans and their families, especially where family members have to quit working to provide 24/7 care.

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