Stars and Stripes: VA leaders, lawmakers look to enhance support for caregivers of veterans by protecting programs, introducing new bills

by Sara Samora

Three senators introduced legislation this week designed to expand home and community-based services for aging and homebound veterans residing in the United States.

The bill, which is called the Elizabeth Dole Home and Community-based Services for Veterans and Caregivers Act, was introduced Tuesday by Sens. Jerry Moran, R-Kan., Jon Tester, D-Mont., and Maggie Hassan, D-N.H.

It accompanies legislation by Reps. Jack Bergman, R-Mich., and Julia Brownley, D-Calif., introduced earlier in March. The House bill, also called “The Elizabeth Dole Act,” will increase the expenditure cap for noninstitutional care programs from 65% to 100%, establish partnerships for alternative care programs within the community and require the VA to coordinate with its other programs, and also expand home and community-based services for aging and homebound veterans residing in the U.S., among other initiatives.

Both bills are in the early stages in each chamber, but along with a Department of Veteran Affairs announcement earlier this week that the agency would not remove or decrease support for legacy participants in its caregivers program, lawmakers and VA leaders are working to enhance support for veterans and their caregivers.

“As we work toward enabling veterans to delay the need for institutional care through legislation like the Elizabeth Dole Act, it is important that we don’t lose sight of making certain related laws we previously enacted are implemented properly,” Moran said Wednesday at the hearing of the Senate Committee on Veterans’ Affairs that focused on the challenges of the VA’s caregiver support programs, particularly the program of Comprehensive Assistance for Family Caregivers.

The program is one of two services of its caregiver support program and was established in 2010. Initially, the Comprehensive Assistance for Family Caregivers program provided support, financial stipends, other resources, and education to only caregivers of veterans who were seriously injured or their injuries worsened in the line of duty on or after Sept. 11, 2001, said Beth Taylor, VA’s chief nursing officer and assistant undersecretary for health, patient care services.

Through the MISSION Act of 2018, the VA expanded the program to veterans of all service eras, beginning Oct. 1, 2020, which is phase one of the program’s expansion.

The revised eligibility meant participants of the program before October 2020 — known as legacy participants — were being reevaluated to determine whether they met the new criteria. This has led many veterans to be dropped from the program or denied access. Moran said the VA is failing at implementing this expansion.

“From the two-year initial delay and implementing phase and implementing phase one to the inexcusably high denial rates, we continue to hear from advocates and caregivers alike about the real fear of being unfairly denied or discharged from the program because of how the VA runs it,” he said Wednesday during the Senate hearing. “Today’s hearing is both timely and necessary as we work to make certain the laws we pass are implemented in ways that work as Congress intended. We have a duty to see that the VA is faithfully executing these laws and investing resources as intended into family caregivers.”

Caira Benson, the wife and caregiver of Eric Benson, an Army veteran, said Wednesday at the hearing that they were enrolled in the program in 2017 before he was diagnosed with traumatic brain injury and the brain disease encephalopathy in 2018. The family was dropped in 2018 because of a “non-permanent address.” Benson said they spend winters with family to accommodate Eric’s conditions and have informed the VA of both of their addresses.

Her husband is now considered wheelchair-bound without hands-on assistance, with the loss of some motor controls, migraines, blackouts triggered by lights and scents, photophobia, and chronic regional pain syndrome. Additionally, Caira Benson said her husband’s neurological degradation has impacted his eyesight and reading ability.

“His level of disability and care needs qualifies him to be enrolled in home-based primary care at the VA, in addition to seeing specialized neurologists,” she said.

When the VA published the new eligibility criteria for the program in October 2020, Benson said she was delighted the new regulations considered illnesses that were not connected to military service.

But despite documentation backing up Eric Benson’s medical conditions, the VA denied the family access to the caregivers program. VA officials said they denied them because the nurse who conducted Benson’s functional assessment rated him as functional across the board.

“A direct contradiction to what we stated to the [nurse] during that assessment and what was clinically documented,” Caira Benson said.

The family appealed a couple of times and were finally approved for level one care, which meant Eric was able to “self-sustain” in the community and they received a smaller amount for their VA caregiver stipend, despite a doctor’s recommendation that they received more care.

Benson said they did not appeal the decision because they were tired of fighting the system.

Unlike other families, Benson said they were able to stay in the program.

“The past five years we have spent interacting with the program have been demoralizing, humiliating, and exhausting,” she said. “Those years have also taught me that this support can be taken away at any time. A truth validated by watching so many other deserving families being discharged right now.”

VA Deputy Secretary Donald Remy said Tuesday that the VA will reexamine its eligibility criteria. In the meantime, the agency will not remove or decrease the support of participants in the program.

Remy said the VA will continue to gather feedback from all its stakeholders, veteran service organizations, caregivers, and veterans on the agency’s plans moving forward. Moreover, the VA will use a human-centered design and customer experience survey and utilize the data to improve the veteran and caregiver experiences.

Phase two of the expansion will commence Oct. 1.

Taylor said the program doubled in size in the 16 months since the phase one expansion. However, the coronavirus pandemic challenged the caregiver support staff in new ways.

“We recognize the hard work of our staff, yet we acknowledge there is so much more to be done,” she said. “To be clear, we were not able to fully anticipate the challenges [the coronavirus] would present and what the impact the regulation would have on different areas of veterans.”

Veterans and caregivers denied from the program can appeal the VA’s decision to the Board of Veterans Appeals as part of the Veterans Appeals Improvement and Modernization Act of 2017.

Colleen Richardson, executive director of the VA’s Caregiver Support Program, said the agency has an additional 70-plus staff getting ready to join the Board of Veterans Appeals. Moreover, Richardson said the agency is in the process of hiring an additional 362 staff members. The program has an estimated 2,200 staff members across the U.S.

Tester, who is the chairman of Senate Committee on Veterans’ Affairs, asked Taylor for the timeline of the program’s reevaluation. Taylor said the timeline had not been established yet.

“We need to look at the process holistically, and we need to anticipate what the impact of any changes in eligibility might be, especially as we have learned in the phase one rollout, different eras of veterans have different needs,” she said. “So we must not only think about the veterans who we’re serving now, but we must anticipate our phase two expansion and anticipate what needs that that cohort of veterans may have that we haven’t seen yet today.”

Veteran organizations are commending the VA on its decision to halt the removal and decrease of support in the program.

“Over the last six months, the foundation and our close partners have held countless discussions with the VA voicing our deep concerns on the evaluation process and the negative consequences being felt largely by legacy post-9/11 caregivers and their veterans who are being removed from the program in large numbers,” Steve Schwab, CEO of the Elizabeth Dole Foundation, said in a prepared statement issued Tuesday. “Today, because of our collective efforts, thousands of veterans and their caregivers who were previously notified will not be transitioned from the program while a new evaluation and eligibility criteria are developed with the full engagement of the community.”