Recognition and Relief: Supporting Vietnam Veterans’ Caregivers

BY RICHARD CURREY

On October 1 the VA made the long-awaited announcement that its Program of Comprehensive Assistance for Family Caregivers (PCAFC), the initiative that has provided support to family caregivers of wounded post-9/11 veterans, was expanding service eligibility to include veterans “seriously injured in the line of duty on or before May 7, 1975.” The PCAFC provides, based on eligibility and other individual criteria, various forms of support for family caregivers, including a stipend, education and training, mental health counseling, and financial assistance when traveling with a veteran for medical appointments.

Prior to October 1, caregivers of Vietnam War veterans (as well as veterans of World War II or Korea) were ineligible for the PCAFC, no matter the level of the veteran’s disability or degree of need. Although a patchwork of various VA services to support caregivers was offered at the time of the PCAFC’s launch in 2011, more comprehensive services, including financial assistance, remained limited to caregivers of veterans injured after September 11, 2001.

To manage the huge increase in the program’s scope needed to deliver services to both pre- and post-9/11 veterans (and eventually veterans of all eras) and their caregivers, VA developed a new data system, the Caregiver Records Management Application (CARMA), which digitizes what had been manual processes and brings improved procedures for VA staff administering the program.

Qualifying pre-9/11 veterans must have “sustained or aggravated a serious injury or illness, have a disability rating of 70 percent or higher and need at least six months of continuous, in-person, personal care services” with a designated caregiver—a spouse, parent, sibling, extended family member, even a close friend. Eligibility and application details are at the VA’s web page, with more information about caregiver support resources at caregiver.va.gov

The final phase of the PCAFC rollout, to include veterans of all eras, is now slated for late 2022.

It has long been understood that family caregivers are critically important in the lives of many service-injured veterans (in part due to ongoing advocacy efforts of many VSOs, including VVA). Getting from that awareness to enabling legislation and a consolidated caregiver program has been a journey of many years.

The VA ran eight caregiver assistance program pilots in 2007 and 2008 that helped inform development of the Caregivers and Veterans Omnibus Health Services Act of 2010, which established the Caregiver Support Program, including PCAFC services for post-9/11 veterans. The VA began accepting applications from eligible veterans and their designated family caregivers in May 2011.

Two years later, in May 2013, the Senate Veterans’ Affairs Committee convened a hearing to discuss, among other veterans’ issues and pending legislation, further expansion of caregiver programs. Rick Weidman, VVA’s Executive Director for Policy and Government Affairs, testified at that hearing and underscored the significance of caregiver support.

“Many Vietnam veterans are alive today,” he said, “because their wives, or sisters, or other relatives have taken care of them for decades. Heretofore there was never recognition of the fact that these veterans would either have had to enter long-term care or been on the street if not for the extraordinary efforts of these family caregivers. Either way, the additional cost to American society would have been large, whether in fiscal cost or the societal cost of having many additional veterans among the homeless.”

Five more years would pass before the VA MISSION Act of 2018 was signed into law, authorizing, among other programs, PCAFC expansion to support veterans of all eras.

Beyond politics and bureaucratic maneuvering, any story about military caregivers is first and foremost a story about people—the veterans injured or sickened in the line of duty, many of whom require complete care, and their caregivers, who meet profound challenges in every area of their lives in order to care for their loved ones.

Caregivers have received little recognition in the national conversation about veterans’ health care. They often manage alone, improvising solutions and work-arounds, becoming adept at using a mix of local and federal social services from different agencies. They may elect to work fewer hours or take lower-paying jobs—or leave jobs altogether—and often face significant financial pressure in the effort to provide their veteran with a fuller and more secure life.

“Being a caregiver is absolutely life-changing,” according to Mary Hahn Ward. She is a caregiver for her husband, Tom, a service-disabled Vietnam Era Marine veteran dealing with amyotrophic lateral sclerosis (ALS). She is a dynamic advocate on behalf of caregivers, the co-host of a highly-rated podcast (This Caregiver Life), author of a book to help caregivers navigate the VA bureaucracy (Thinking Through VA Benefits and VA Care: A Resource for Veterans with ALS and Their Caregivers), and an alumna Fellow of the Elizabeth Dole Foundation.

“I served two years as an active Dole Foundation Fellow,” Ward said, speaking from her home in North Carolina. “It’s a wonderful organization that’s at the center of caregiver support in this country.”

After meeting several military family caregivers on a visit to Walter Reed and hearing about the extraordinary sacrifices these family members made to be caregivers, former U.S. Sen. Elizabeth Dole launched the foundation in 2012. As part of its mission to represent, support, and empower military family caregivers, the Dole Foundation commissioned the first major study of military caregivers, issued in 2014, and a research blueprint for improving caregiver support three years later. These reports contributed rigorous caregiver-centered evidence-based data, allowing the first extensive understanding of the needs and challenges of the more than five million military caregivers in the U.S.

“The Dole Foundation gives voice to us as caregivers,” said Ward. “When I became involved with the foundation it filled a need in my life. I was a very lonely caregiver, and my colleague Fellows—who became my friends and partners in this lifelong work—helped me maintain strength and focus. Fellows are trained in how to be effective advocates, but we also help each other think through things. To do that with another person having the same experience as you is invaluable.”

Ward applauded the VA’s effort to be more inclusive in terms of qualifying conditions for PCACF participation, citing the importance of eligibility changes that now include veterans with any service-connected disability, be it injury, illness, or disease. “In the past, the caregiver program was for vets who were combat-wounded,” Ward said. “I think the VA recognized there are many vets out here who have service-connected conditions that don’t conform to absolutes, like my husband with ALS.”

But while more-inclusive eligibility criteria might offer the potential of helping many more veterans in need, Ward’s tenure as a Dole Fellow brought home the significant concerns many caregivers still have about what they see as a “very limited attitude at the VA,” she said.

“For example, in its assessment of ADLs [activities of daily living], the VA asks questions from a yes-no perspective. Can a vet tie his shoes or not? Can a vet take a shower unaided or not? Well, nobody’s life, let alone a severely disabled veteran’s, works out quite that neatly. There are good days, bad days, and days in between. And what about a vet with a traumatic brain injury or some other cognitive issue? He might remember to take a shower, he might not, or he might remember today but not tomorrow. These conditions demand a different method of evaluation.”

Ward said there is at least some anxiety in the caregiver community about how—and how well—the VA will manage the PCAFC rollout. One of her questions centers around the problem of profoundly injured or seriously ill veterans who in some way do not meet the 70 percent disability rating requirement.

“Some vets need virtually 24-hour care at home—but may not be rated at 70 percent,” she said. “What about them?” This position reflects VVA President John Rowan’s statement to AARP, in which he welcomed the PCACF expansion but added that VVA is “deeply dismayed that VA is requiring an eligibility rating of 70 percent or more service-connected disability as this will allow the VA to deny this benefit to the families of Vietnam veterans who have waited eight long years for this benefit.”

The lengthy time frame that the VA seemingly needs to implement full PCACF benefits (to veterans of all eras) is also problematic for Ward. Delays in disability rating decisions and subsequent appeals can hinder a veteran’s capacity to meet criteria for the PCAFC. “And with full rollout now scheduled for late 2022, a lot of vets in serious need who might have benefited may no longer be alive,” she said.

Ward also said that ironing out the government red tape is at the heart of her concerns. “We have to remember how caregivers feel and what it’s like from our perspective,” she said. “We want to see a VA process that is not mired in bureaucracy, that’s truly there to help the veteran and the caregiver. This is what we all want, I think. It just shouldn’t be as hard as it is for so many people.”

On the same day that the PCACF rollout was announced (Oct. 1), Sen. Jon Tester (D-Mont.) and Rep. Mark Takano (D-Calif.), in a letter to VA Secretary Robert Wilkie, posed significant questions about the VA’s readiness and operational capacity to effectively launch the PCAFC expansion. Tester is Ranking Member of the Senate Committee on Veterans’ Affairs and Takano is Chair of the House Veterans’ Affairs Committee.

Immediately before announcing the PCACF expansion, the VA notified congressional staff about “30 system issues” (referring to the new data system) that “needed attention in the near future,” but did not specify the exact nature or severity of these issues. The expanded PCACF rollout was nonetheless announced, presented as up and running and ready to receive applications—despite VA having advised congressional staff about the system deficiencies only days before the launch.

In their letter, Tester and Takano also noted that VA “ignored input from key stakeholders, caregivers, and their families and chose to tighten eligibility in a manner not intended by Congress.” The new rules “will remove current program participants and limit the enrollment of many disabled veterans and their caregivers.”

Tester and Takano also raised the 70 percent disability issue, echoing the concern of Mary Hahn Ward and John Rowan. “Had Congress contemplated a minimum [disability] rating,” Tester and Takano wrote, “it would have included that requirement when PCAFC was originally created in 2010 or when it was expanded under the VA MISSION Act.”

The VA did not respond to a request from The VVA Veteran for comment on the concerns voiced by Sen. Tester and Rep. Takano.

Despite rollout problems that still need to be solved, the importance of the PCAFC cannot be overemphasized. It is a critical lifeline for veterans and their family caregivers that will go a long way toward resolving inequities in caregiver benefits. In the words of Sen. Tester and Rep. Takano, the PCACF will “finally provide caregivers of all service-connected veterans the recognition and relief they deserve.” John Rowan, speaking on behalf of VVA, applauded “the expansion of this long-overdue caregiver benefit, which will enhance the quality of life for Vietnam veterans and their families.”

Mary Hahn Ward recently learned that she and her husband Tom have been approved for the caregiver program. “There are still a few layers of red tape to get through,” she said, “but I will say this about the caregiver program: It feels like respect for what I do for my veteran, for what I’ve personally and professionally given up to care for him.”

Ward added that it is her “greatest hope that our Vietnam vets and their caregivers not only get the critical support they need, but feel honored. At the very least I’d like to see the caregiver program become an easier process for them. We owe so much to Vietnam veterans and VVA in terms of how far we’ve come in this country with the VA, with benefits and with public awareness of all that veterans contend with. The Vietnam generation and their caregivers and families have given so much and made such great strides with their powerful advocacy over the years.”

2017 | 2016 | 2015 | 2014
2013 | 2012 | 2011 | 2010
2009 | 2008 | 2007 | 2006
2005 | 2004 | 2003 | 2002
2001 | 2000