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VA caregiver program under fire

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Steve Walsh
/
KPBS
In this undated photo, Nikki Stephens and her son Noah talk about what it's like to take care of Noah's father, John, a former Marine.

The Veterans Health Administration is revamping its caregiver program to enroll more veterans, but thousands of family members in the veteran community say they’re being kept in the dark about the changes.

Nikki Stephens, of Murrieta, cares for her husband John, a former Marine who was injured in Fallujah, Iraq, and who now suffers from epileptic seizures.

“If he has a status seizure — meaning he goes into a seizure that's longer than five minutes — that's when it becomes really dangerous. He needs somebody to be able to call 911 for him,” she said.

The VA program pays family members to be full-time caregivers. It was originally designed for post-911 vets. The agency recently started reviewing all of the participants, after Congress opened the program to veterans from other eras. Stephens says she recently got a letter from the San Diego VA, which said the VA would lower the amount of money she receives. A few days later, VA Secretary Denis McDough ordered a pause to review the program, after reports that hundreds of caregivers in the original program were being dropped.

“The harm that is being done is to the families,” Stephens said. “That are kind of being whipped back and forth with this. You know — am I on the program? Am I not on the program?”

Coleton Whitaker is with the Elizabeth Dole Foundation. Its Hidden Heroes program works with military caregivers. He says his group continues to hear from clients who say they are being dropped from the program, even though the secretary said the program was on hold during the review.

“They're either not receiving benefits anymore (or) being told they should plan accordingly, because they will not be,” Whitaker said. “Or (they) would be receiving quite a substantial amount less than they may have, you know, been receiving previously.”

Advocates are asking the VA to stop removing caregivers until the final rules are put in place. There are currently 33,000 families enrolled in the program, which began in 2011. Congress expanded the program in 2018. Veterans who served before 1975 were admitted in 2020. If the VA keeps to the timeframe, all other veterans are scheduled to be eligible beginning in the fall.