steve schwab, ceo of the elizabeth dole foundation

Can you be grateful while demanding more? Is it possible to admire and acknowledge the dedication and passion of someone’s work while believing it’s a distraction from real progress? Can someone’s work be both absolutely vital and movement in the wrong direction?

Last week I attended the Annual National Convening of the Elizabeth Dole Foundation and Veterans Affairs in Washington, DC.

While the military has long been sending soldiers home from war permanently altered, it was only about five years ago that they discovered caregiving. That was when the Elizabeth Dole Foundation funded a RAND study of military caregivers. They’ve used this data to build awareness and pass legislation with the ultimate goal of creating systemic change.

Senator Dole excitedly announced that her foundation is currently funding work by Booz Allen Hamilton to use “big data” to locate caregiver communities with “pin point accuracy” and create a “direct pipeline” so they can “implement projects” nationally and end “one size fits all caregiver support.” They are going to provide care “economically, effectively, and efficiently.”

It’s not a surprise that the US Department of Veterans Affairs would focus on finding “tactical solutions” for caregiving.

The beta version of the Booz Allen Hamilton Caregiver EpiMap depicted the caregiver to care recipient ratio, along with the social determinants of health. You get averages for each determinant, not the arguably more meaningful median or mode. The graphics showed county-level information on lack of sleep, poor nutrition, and other things that don’t seem like the sort of things that are easily captured in public health data. The Booz Allen Hamilton representatives reassured me that they had not, as I jokingly proposed, hacked into everyone’s fitbits; they are pulling from publicly available data sources.

It’s too early to know how the EpiMap will be utilized. I’ll admit that hearing how it will provide the national VA staff with the ability to determine who needs support from afar gave me flashbacks from my economics textbook explaining how central planning worked in the USSR. Which is fitting, since the VA system is America’s version of socialized medicine.

Disability support programs as we know them came from the military. It’s easy to get voter’s on board to support disabled veterans. The VA conducts research, develops programs, and creates best practices that are then handed over at no cost for civilian organizations to replicate. Thus, the work of the VA has a huge impact on every American’s interaction with healthcare.

The thing is that caregiver support is being framed as charity for these “hidden heroes.” It’s the same old depiction of caregiver as saint, not an actual human being. Veterans are depicted as generic heroes who have sacrificed their able-bodiedness and/or mental health for our Freedom. Their selfless spouses, children, and friends are the hidden heroes who are supporting them in the decades after they come home from battle.

Thanks to the Campaign for Inclusive Care, the VA is implementing training to help staff “think like caregivers so when you ask a question the person on the other end of the line knows what you’re talking about.” They’ve developed a Caregiver Experience Map so staff can understand the journey caregivers go through while utilizing VA services. There are strict boundaries for each program that determine the limits of funding and who qualifies, but in the VA each veteran is provided with their eligibility by the Transition Assistance Program.

The TAP may become out of date and VA hospital discharge plans may not be realistic for families to follow, but the Wounded Warrior Project is available to create a new plan that works with the actual needs of the family.

Dr. Lynda Davis, Chief Veterans Experience Officer for the VA, reminded us that caring about “customer experience” is new. That including the concerns of patients and families in electronic medical records was an afterthought. That the VA is just starting to pay attention to the fact that not all primary caregivers are spouses and that often the whole family is involved with care work.

They are finding work-arounds to allow caregivers who aren’t in the VA system to be included, like providing automated text message supports instead of a VA-only app. Many military caregivers don’t have health insurance themselves, so they’ve come up with self-care that doesn’t require access to formal medical care.

The VA is embracing family caregivers and formalizing their role as unpaid laborers in the system, rather than providing paid professionals to do this work. Caregivers are being welcomed into the system as a way to increase patient compliance. Caregivers can ensure medications are taken as prescribed, exercises are being done at home, patients are transported to appointments on time, and follow-up appointments are scheduled. A caregiver spoke about how managing medications was not simply handing out pills at the right time; it meant taking responsibility for each medication prescribed, understanding how they worked, how they interacted, and if it was truly the optimal medication regimen.

While the focus of the Elizabeth Dole Foundation’s work is ostensibly to support military caregivers, the person providing this care is not the point. Military caregivers are important not as people of inherent worth, but as providers of care to veterans. They deserve support not as human beings in need, but because supporting caregivers allows them to continue to provide more care work over a longer time. Military caregivers are important because they minimize the need for home health aides and other paid staff. Military caregivers keep veterans out of institutions. More importantly, military caregivers keep veterans off the streets.

Nearly a quarter of the people living on the streets in America are veterans.

Military culture is a unique thing; caring for a veteran has unique requirements. Military families move constantly and face long deployments, leading to weak social ties. Veterans have experiences that civilians struggle to understand. Transition out of the military can be difficult, something made much harder by a disability.

Operation Gratitude asks the public to provide gift baskets to veterans and their families. Those who are not from military families are asked to offer extra understanding and extend a warm welcome to the veterans and their families living among them. Veterans and their families are not given space to be vulnerable, or even to be regular people. They are to accept this charity in exchange for playing the role of hero, to be more inspiration porn.

When I spoke to Steve Schwab, CEO of the Elizabeth Dole Foundation, he was concerned about the ways paying military caregivers for their work could create a perverse profit incentive that could override care as a labor of love, like in predatory foster care situations.

I wonder about the ways expecting spouses and children to provide long-term medical and administrative care to their loved ones — many of whom quit their job to do so — interferes with a loving family relationship. Military caregivers have no real ability to say no. There is no option to keep your career with the support of paid care workers. There is no option to be a loving spouse or child and not a caregiver. Either you take on everything, all the medical care and coordination and administration and transportation, or you abandon your loved one.

We’re ready to recognize military caregivers as heroes, but not to trust them to be paid for the work they do or make up for their lost income. We’re ready to guide them on self-care, but not provide them with health insurance. We’re ready to better allow them to carry out the orders of the treatment team at the VA, but not to let them direct the type of care appropriate to their situation. We’re ready to send them a gift basket, but not to provide ongoing paid assistance.

When I asked Schwab how caregiver support fit into the big picture of social justice he said it was something he’d never thought about. I asked because people who serve in the US military aren’t randomly chosen. Disability rates aren’t equally distributed across the military population. The impact caregiving has on a military family depends on a lot of socioeconomic factors. The way the VA sets up support for military caregivers cannot be race, class, or gender-neurtral, because the world isn’t neutral. Those repercussions will echo into the larger US population as best practices are disseminated for the civilian healthcare systems.

I don’t doubt the dedication or intelligence of the people doing this work. Everyone I’ve spoken to at the VA has cared about their job in the sort of way that doesn’t turn off when they go home at night. They are looking at the people and the situations in front of them and doing everything in their power to help.

As critical as I am, military caregivers need this support. The work the Elizabeth Dole Foundation and the VA is doing to help caregivers is essential. But it’s not a real solution. It’s harm reduction. It’s treating the symptoms, not addressing the systemic issues. There is far more work to be done.

The Honorable Robert Wilkie’s opening remarks told us that “American liberty is not sustained by protestors, professors, and pundits.” What does he make of the protestors who abandoned their wheelchairs to crawl up the steps of the US Capitol Building and demand rights for people with disabilities? What of the pre-9/11 military caregivers who are fighting to get the same type of support caregivers of veterans of our current wars receive? Aren’t they fighting for American liberty and dignity?

Somehow, with all the talk of the support caregivers need and deserve, there was nothing human about it. Just like how our high school history books take incredible dramas and render them snooze-worthy, the personal stories of military caregivers were flattened out in bland stereotypes.

When I spoke with Andrea Dorsey, a military caregiver, she shared that she hadn’t identified as a caregiver until she became a Dole Fellow. She didn’t tell anyone in her life about her experience caring for her husband until they opened up about it on the Today Show. She didn’t think her friends or family would understand and she kept assuming caregiving was going to be temporary, until after a decade it was clear that it wasn’t temporary. A PTSD diagnosis can mean a lot of things, but she didn’t want people to think her husband is “broken, dangerous, or crazy” or think he doesn’t take care of her, too.

She’d learned to navigate the VA on her own and kept her struggles private. She’s not the type of person to go to support groups. There’s much more to her life than her role as a caregiver.

Now that her husband’s health is stable, she’s had the chance to process what she’s been through and reframe the experience. Helping other caregivers gives her a sense of purpose and lends her experience meaning, even if she didn’t want that sort of help herself. As a Dole Fellow she can speak to other military caregivers, connecting not as a support group, but as an “empowerment group.”

If the goal is to end the isolation military veterans and their caregivers feel, the first step is allowing them to be human. We haven’t gotten to that point yet.

If you’re a military caregiver, The Caregiver Support Program (CSP) focuses on your needs. Caregivers and Veterans can learn about the full range of available support and programs by visiting, contacting the Caregiver Support Line toll-free at 1-855-260-3274, and through their local VA Caregiver Support Program.

Featured image of Steve Schwab courtesy of Susan Davis International

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

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