Help for Wounded Warrior Caregivers

For years, Duane Kozlowski’s debilitating medical problems were incorrectly diagnosed.

In 1996, he suffered massive internal injuries and brain trauma from a sexual assault. He was without oxygen for 8 to 12 minutes and was resuscitated four times on the operating table. Still, no one checked him for brain damage.

Instead, he was returned to active duty, and his physical and mental health continued to deteriorate, specifically after he was deployed as part of Operation Enduring Freedom.

“It wasn’t a place for a person with brain injury,” said his wife, Dr. Rebecca Kozlowski. “He came home not himself. I deployed my husband, and I never got him back, basically.”

Following that service in Korea to support helicopter operations for the war in Iraq, Duane suffered a sharp decline physically and mentally. The 17-year Army veteran received a hardship discharge in 2003 that rated him 30 percent disabled. Duane’s traumatic brain injury (TBI) and post-traumatic stress disorder (PTSD) had yet to be diagnosed.

“He lost his whole retirement and everything,” Rebecca said. “We had nothing — literally nothing — to live on. He tried to work, but he was pretty much unemployable because of his injuries.”

The family ended up on welfare as Rebecca worked to complete her doctorate in psychology. At one point, she worked 90-hour weeks and left Duane in charge of their five children, all who are classified as special needs.

“He lost kids; he got into all kinds of trouble,” she said. “He couldn’t be responsible for himself, let alone anyone else.”

They tried full-time care for the kids and full-time care for Duane. Family members moved in as Rebecca tried to manage a career around the challenges the family faced. At one point, she cleared only $300 per month despite her 90-hour weeks because of the high cost of care for her family.

She lost four different full-time jobs because of her family’s care requirements. She spent eight years searching for a diagnosis for her husband and for a way to help him.

Duane was being treated for depression at a Chicago-area Veterans Affairs facility. But Rebecca knew he had a more serious diagnosis.

She requested he undergo a brain scan after increasingly erratic behavior. The results proved TBI, and with that came a diagnosis of PTSD. Rebecca says that 2004 determination was one of the first cases of TBI to be diagnosed in the state of Illinois.

However, it wasn’t until August 2011 that Duane was reclassified by the VA as 100 percent, permanently disabled, and his discharge has yet to be amended. The technicality means his family still does not receive additional funds he should receive for his disability rating.

The family is currently waging three appeals to receive additional benefits, with Social Security, who denied the family benefit because of the Army’s incorrect paperwork, with the Army, to pay him his 100 percent disability rating and with the DOD to increase the number of caregiver hours the family receives. Rebecca’s father literally died on the phone of a heart attack arguing Duane’s case.

While they wait, a new Department of Defense program is providing the family with some relief. Rebecca receives funding from Special Compensation for Assistance with Activities of Daily Living. The program compensates service members for the time and assistance caregivers provide at home in lieu of the government providing residential institutional care, said DOD spokeswoman Cynthia Smith.

To qualify for the program, a service member must have suffered a catastrophic injury or illness in the line of duty; be certified by a licensed physician to be in need of assistance from another person to perform the personal functions of everyday living; orwould, in the absence of this provision, require some form of residential institutional care, Smith said in a written statement. The amount paid is based on the member’s level of dependency and caregiver assistance required, she said. As of Jan. 31, more than 400 service members have qualified for and are receiving SCAADL, Smith said.

“It has been a tremendous benefit for our family — I can’t say that enough,” Rebecca said. “But getting the whole system to work well, that’s another issue.”

Under the program’s guidelines, the family qualifies for 25 hours of caregiver compensation a week. The low amount is due to the fact that the criteria for care measures the needs of those who are physically injured rather than suffering from mental injuries. For example, Duane is physically capable of taking a shower, but without constant supervision, he doesn’t. He once went 10 days without bathing because he didn’t think to do it, Rebecca said. He’s physically capable of brushing his teeth, but he developed horrible tooth decay because he didn’t think to do it, she said.

“They weren’t asking about the stuff that really makes it the 24-hour, 7-days-a-week job (his care) is,” Rebecca said.

Still, the roughly $1,200 per month they receive is the first step in their attempts to recover from financial ruin, she said. In the meantime, she’s filing an appeal to receive full-time caregiver benefits.

“Our picture is horrible because we come out of eight years of unfunded, messed up stuff,” she said. “If this had happened to us originally, if we could’ve skipped the last seven years of struggling along, we wouldn’t be in the shape we’re in now.”

But Rebecca remains hopeful that her family’s story will help others.

“We want to spare families coming behind us the really messy journey we’ve had,” she said. “We want people to stand up and speak together about how can we make these benefits work more efficiently. Our story’s kind of ugly, but we really try to look at it from a positive way of how can we benefit other people.”

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