University of Pittsburgh psychiatry professor Richard Schulz has been one of the nation’s foremost researchers on caregiving stress for
WASHINGTON — The last time Dennis Joyner walked, he was on patrol in Vietnam’s Mekong Delta on June 26, 1969.
That’s when he tripped a 105-pound booby trap bomb. He lost both legs above the knees and his left arm below the elbow.
“I have been confined to a one arm drive wheelchair for 48 years,” said the 68-year-old Longwood, Fla., resident. “As a former high school athlete, my life changed drastically in how I have to live with the combat injuries I suffered in Vietnam.”
He gets lots of help from his wife Donna, “my day-to-day caregiver.”
Alexis Courneen was in the Coast Guard 30 years later when she suffered traumatic brain injury (TBI). While underway on the East River in New York, she was hit by a buoy. It was swinging on a crane as she and her colleagues attempted to secure the buoy to the deck.
On any given day, her brain injury can bring an array of symptoms, said her husband Jason Courneen, “as the effects of TBI are very much a roller coaster more than they are a steady uphill improvement or downhill decline in function.”
Jason Courneen doesn’t prefer the caregiver title, saying he fills in the gaps left by what Alexis Courneen can no longer do. “With that said,” he added, “to maintain continuity in her care, I handle all of her care coordination with her providers and case manager, manage our schedule, household finances and responsibilities.”
The sacrifice of caregivers is too often overlooked. For Donna Joyner and Jason Courneen, it’s more like they were bypassed.
In the case of veterans injured on duty, Uncle Sam pays more attention to some of their caregivers than others. The law allows the government to provide caregiver services for vets injured on Sept. 11, 2001, or after, but not those injured before that like Dennis Joyner and Alexis Courneen.
That means injured veterans who also are older, and often need caregiver services the most, are not eligible for this program.
Veterans service organizations, along with members of Congress and the Department of Veterans Affairs’ leadership want to change that. This week, Disabled Americans Veterans will release a report and hold a Capitol Hill forum to illustrate the problem. DAV describes its “Unsung Heroes Initiative” as “a national campaign to raise awareness about the service and sacrifice of caregivers to America’s severely disabled veterans as well as the inequities of supports available, particularly for those injured before 9/11.”
The total cost for the caregivers program was about $454 million in 2015, a measly sum in government coffers, or about $18,300 per enrolled vet, according to the Congressional Budget Office.
“Most of that cost resulted from stipends paid to caregivers,” the CBO report said. “To qualify as a caregiver, individuals must be at least 18 years of age and either a member of a veteran’s extended family or live with the veteran full time. Stipends are paid monthly and are based on the hours of daily care the veteran requires and the prevailing wage for home health aides. In 2015, stipends paid under the program ranged from $7,700 to $29,000 on an annual basis, and averaged roughly $15,600.”
Congress is considering bipartisan legislation in both chambers that would make all veterans, no matter when they served, eligible for the caregiver support. The bills are sponsored by Rep. Jim Langevin, D-R.I., co-chair of the Bipartisan Disabilities Caucus, and Sens. Patty Murray, D-Wash., and Susan Collins, R-Maine.
“Enactment of these bills is necessary to more equitably and fully empower family caregivers of severely disabled veterans from all wars,” said an open letter to Congress written by DAV and signed by more than 40 organizations.
Had Alexis Courneen’s buoy accident happened two years later, life could have been very different for her and her family.
Under the Program of Comprehensive Assistance for Family Caregivers, service providers for vets injured since the Pentagon and the World Trade Center attacks can get stipends, travel expenses, and training among other benefits. The VA also monitors the quality of care provided by the caregivers.
But for the Courneens, “we had no case management, and I felt like we had no ally within the VA system we could turn to,” Jason said. “It was a pretty isolating, frustrating, and lonely feeling — for both of us. My career opportunities have been limited. I have always had to balance providing for my family and caring for Alexis and our girls.”
Because of Dennis Joyner’s injury, “my wife resigned from her full-time administrative assistant position to provide total care for me,” he said. “Due to her resignation, our income was substantially decreased, and she lost her retirement benefits, and her Social Security has been drastically affected. If she received caregiver funding, it would help replace the loss of her career to care for me. She also would be eligible for training in areas necessary to provide daily assistance for me.”
Beyond the benefits for individuals, Veterans Affairs Secretary David Shulkin said expanding caregiver services could save money by allowing the elderly to stay in their homes longer, a cheaper alternative than institutionalization.
“We hope by expanding caregiver benefits, particularly to older veterans, [who] today aren’t getting the benefit the way that they should,” Mr. Shulkin told a Senate hearing last week, “that we actually find that that’s going to be cost-effective because remember, we pay for long-term care.”