'Dehumanizing:' Why Veterans Are Giving Up on the Caregiver Program After Surge of Expulsions

Caregivers and advocates watch Sarah Verardo, CEO of The Independence Fund, testify.
Caregivers and advocates watch Sarah Verardo, CEO of The Independence Fund, testify about her experience caring for her veteran husband during a hearing of the Senate Armed Services Committee on March 23, 2022. From left to right, Verardo, Steve Schwab, CEO of the Elizabeth Dole Foundation, Caira Benson, caregiver to an Army veteran, Jim Marszalek, national service director for Disabled American Veterans, and Andrea Sawyer with the Quality of Life Foundation. (Military.com photo by Patricia Kime)

Eric Benson, a former Army officer who suffered a head injury in Iraq, managed the first 30 minutes of a required Department of Veterans Affairs' interview before he unraveled.

According to his wife Caira, Benson can sustain “cognitive activity" for about a half-hour. At the 30-minute mark of the lengthy interview, he "doubled over and began drooling on himself from exhaustion."

The session was an eligibility assessment for the VA's family caregiver program, an initiative launched in 2011 to provide financial support for family members who support veterans suffering from varying degrees of disability.

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"The program should have been a blessing. However, the program has become unpredictable, stressful and, frankly, dehumanizing," Caira Benson said during a Senate Veterans Affairs Committee hearing Wednesday in Washington, D.C. "The assessments are demoralizing."

A member of the Program of Comprehensive Assistance for Family Caregivers off and on since 2017, the family was recently downgraded to the lowest tier of assistance, even though three doctors have recommended that Eric never be left alone.

They, like many others, don't plan to appeal.

"The appeals processes exist for a reason. ... In droves, folks are not appealing because they're exhausted," said Steve Schwab, CEO of the Elizabeth Dole Foundation, during the hearing.

Reassessments of 19,000 program participants that began in October have resulted in a significant number of veterans being discharged or downgraded to a lower level of compensation.

Just how many is unknown outside of the VA. VA Secretary Denis McDonough said Tuesday that assessments of cases like the Bensons to determine whether they meet new eligibility criteria have resulted in a "much higher number" of veterans being discharged from the program than the roughly 6,000 people officials had anticipated.

VA officials have not released the exact number who have been kicked out of the program despite repeated requests from Military.com.

What is known, however, is that the figure was significant enough for the VA to order a pause in the discharge process while it launches a review of the new eligibility criteria it’s been using. Also known is that just 13% of those who appeal their decisions win.

"The process is broken. It's not working. It's not how anybody intended it to be. You got to go back to the drawing board and figure out how we do this together," said Jim Marszalek, national service director for Disabled American Veterans, also at the hearing.

The level of assistance needed by the veteran determines the amount of compensation a caregiver receives -- between roughly $1,750 a month to just more than $3,000.

Caregivers in the program also receive health care coverage and support services.

Scheduled reassessments of participants who were in the program prior to Oct. 1, 2021, will continue, since they were set to conclude by the end of this month, but no discharges will occur while the VA completes the program evaluation, according to Colleen Richardson, executive director of the VA’s Caregiver Support Program.

Before the VA announced the suspension Tuesday, participants who previously received notifications that they had been discharged or their benefits downgraded were set to receive stipends at their current levels through March 2023.

Now, the VA plans to contact all legacy participants to explain the pause and let them know their discharges are on hold, pending the review.

"Rest assured ... we'll make sure that it's equitable and fair to all veterans as we move forward in this process. So, more to come," Richardson said during the hearing Wednesday.

As a result of the 2018 VA Mission Act, eligibility for the family caregiver program was expanded to include severely injured or disabled combat veterans from previous eras, beginning last October with veterans from World War II through the Vietnam War and this October for vets who served after May 1975 through Sept. 11, 2001.

At the same time, the VA published stricter eligibility criteria that focus on whether the veteran needs assistance with certain activities, such as eating, grooming and moving, or needs continuous supervision or instruction.

As a result of those changes, the VA initiated a review of post-9/11 veteran participant cases. However, advocates say the assessments have been inconsistent, with reviewers seemingly pursuing "how do we get to a 'no' versus how to get to a 'yes,'" according to Schwab.

"The inconsistency on the experience that caregivers have faced across the country is unbelievable," Schwab said.

Inconsistency was cited in two previous suspensions of program dismissals -- in 2017, which resulted in a series of program changes, including a directive for medical centers to fix inconsistencies, and in 2018, over similar concerns.

Beth Taylor, the VA’s chief nursing officer and assistant under secretary for Health, Patient Care Services, testified that changes have resulted in consistency and standardization across the system with just "three facilities that are outliers."

But advocacy groups are seeing a very different picture.

“There are far too many stories … that point to some real root issues, and we think it’s because there are 160 facilities that are executing this program in different ways,” Schwab said

In addition to those discharged from the program, changes to eligibility could potentially affect thousands of veterans who applied for the program but were denied. During the hearing, Montana Democrat Sen. Jon Tester, who chairs the committee, asked whether those vets would need to reapply if new criteria are established.

Richardson said that, given that the discharge suspension and review was just announced the day before the hearing, there's "more to come."

"We haven't figured out exactly the path that we want to go in with yesterday's announcement," Richardson said.

Speaking to the committee, Sarah Verardo, CEO of the Independence Fund and a caregiver for her husband, Mike, an amputee who sustained burns over 30% of his body, said her family recently learned that they would be dropped down a tier in the program and receive the lowest level of stipend.

She begged lawmakers for help -- not only for veterans to remain at their previous levels, but for relief from the hours-long assessments that force patients to rehash intimate details of their injuries and incapacity, even though those are documented in medical files.

"My husband had his arm and leg blown off. He's burned over more than 30% of his body. He's had 120 surgeries … and VA is forcing us to relive why he is on catheter care, bowel and bladder care," Verardo said. "[He] just got dropped a level. My first thought was, 'I don't have the fight in me anymore. I just can't do it. I have been fighting to keep him alive and to advocate for more than a decade. They won. VA won."

-- Patricia Kime can be reached at Patricia.Kime@Military.com. Follow her on Twitter @patriciankime.

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