In an undated file photo, Alexis Courneen and her service dog, Sooner, pause outside a veterans event

In an undated file photo, Alexis Courneen and her service dog, Sooner, pause outside a veterans event (Courtesy of Alexis Courneen)

WASHINGTON – Jason Courneen was 23 years old when he became the primary caregiver for his wife, Alexis, who suffered a traumatic brain injury in the Coast Guard.

At the time, he had a background in construction and no ties to the military, other than Alexis. With no outside help, he learned to navigate the Department of Veterans Affairs and coordinate Alexis’ medications and health care.

“I felt very lonely, very isolated and very frustrated,” Jason Courneen said. “I just felt entirely too ignorant to tackle this huge process – this huge entity that is the VA – and learn the medical care I needed to. That’s where I was the slowest to catch up, so that really needs to change.”

Because Alexis Courneen’s injury happened in 1998, the couple – like many others – remains ineligible for medical training, counseling, respite care and monthly stipends from the VA.

Those benefits, and others, are available only to caregivers for veterans wounded post-9/11. But there is now a push in Congress, led by Disabled American Veterans and the Elizabeth Dole Foundation, to expand the services to all veterans.

A 2014 study by Rand, a nonprofit research corporation, found there are 5.5 million caregivers to veterans in the United States, and about 4.4 million of them provide care to veterans injured before 9/11.

Disabled American Veterans found similar statistics in a survey of 1,833 caregivers released Monday. The average age of the caregivers who they surveyed was 56 and they spent an average of 10 years caring for a veteran.

If they were able to receive benefits, caregivers surveyed said the most important would be monthly stipends from the VA, health insurance for caregivers, medical training and access to a home health aide to provide additional assistance.

In March, VA Secretary David Shulkin said the VA caregiver program “needs to be for all veterans.” His acting under secretary of health, Poonam Alaigh, echoed that message during the Disabled American Veterans’ survey release and launch of its “Unsung Heroes” campaign Monday at the Capitol. She said about 2.4 million VA patients rely on caregivers.

“We have programs that I think are just so incredible, and those are programs we want to grow,” Alaigh said. “We want to work with all of you so that every veteran has the ability to be home, in the setting he or she is most comfortable.”

The current VA caregiver program was created with legislation in 2010. Veterans eligible had to have sustained a serious injury post-9/11 and they must be in need of personal care and enrolled in VA health care.

There’s legislation now in the House and Senate that would expand the services to caregivers of veterans who were injured before 9/11. Forty-two veterans groups signed onto an open letter to Congress last week urging lawmakers to quickly pass the bills.

“We need to make that ironclad guarantee to our military members that we will be there for them, and sadly we have not done that when it comes to caregivers,” Sen. Tammy Duckworth, D-Ill., said Monday.

Duckworth is a former Army helicopter pilot who lost her legs in Iraq.

“I think most Americans don’t get this. If they understood, I think they’d be up in arms about it,” she said. “This is absolutely critical.”

The House has yet to discuss H.R. 1472, the Military and Veteran Caregiver Services Improvement Act of 2017. The Senate’s version of the bill, S. 591, was the subject of a hearing last week, where Rand released a new report commissioned by the Elizabeth Dole Foundation – a group created by former Sen. Elizabeth Dole, R-N.C., that supports caregivers.

Terri Tanielian, a senior behavioral scientist at Rand, testified the federal government needs to invest funding into researching caregivers – the health effects of caregiving, the effects of caregiving on children, and how current programs and policies affect caregiver well-being.

The caregivers surveyed by Disabled American Veterans noted financial sacrifices and caregiving affecting their friendships, family lives, careers and physical and mental health.

“Knowing what works and for whom can help lead to sound policies,” Tanielian said. “The role of our blueprint is to convey a vision for future investments and research that will lead to improved support for military and veteran caregivers.”

Dole also asked the bill to expand caregiver services to veterans injured pre-9/11 be passed by the end of the year.

“It’s a very unfair situation,” she said. “It’s so frustrating to me, because these caregivers have been providing services for years with no acknowledgement or the resources to have some respite or an opportunity to have a stipend. They deserve the same benefits as post-9/11 do.”

The current post-9/11 caregiver program has recently been the subject of scrutiny.

It’s under review by the VA, following a NPR investigation in April that found 32 of 140 VA medical centers had cut the number of families from their caregiver programs since 2014, some of them by more than half. During the review, Shulkin has ordered medical centers not to drop any more families enrolled in the benefit.

The review was initially slated to last three weeks, but it was extended to the end of June. Approximately 22,000 caregivers are now enrolled in the program.

Shulkin has testified to lawmakers he wants to use the review to find a way to expand caregiver services to more veterans.

For Alexis Courneen, and millions of other veterans, having a caregiver allows her to stay home. Of the caregivers who answered the Disabled American Veterans survey, 75 percent said the veteran they care for would need institutional care, now or in the future, if they had no family caregiver.

“I can’t cook by myself because I can’t smell something that’s burning,” Alexis Courneen said. “I forget things. I leave water on, and I can’t hear it, so I’ve flooded things. He’s given me every piece of independence that I have. If anything happens to him, I’m really screwed. There is no other option.” Twitter: @nikkiwentling

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Nikki Wentling has worked for Stars and Stripes since 2016. She reports from Congress, the White House, the Department of Veterans Affairs and throughout the country about issues affecting veterans, service members and their families. Wentling, a graduate of the University of Kansas, previously worked at the Lawrence Journal-World and Arkansas Democrat-Gazette. The National Coalition of Homeless Veterans awarded Stars and Stripes the Meritorious Service Award in 2020 for Wentling’s reporting on homeless veterans during the coronavirus pandemic. In 2018, she was named by the nonprofit HillVets as one of the 100 most influential people in regard to veterans policymaking.

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