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Taking Care of our Veterans’ Caregivers

By David Sandman, President and CEO, New York State Health Foundation
Published in the HuffPost on November 6, 2017

The nation will say “thank you for your service” to its military veterans this week. New York State is home to more than 800,000 veterans, most of whom return home from war healthy and whole. Of those veterans who come back to New York with injuries or chronic physical and mental health care needs, many rely on family members or friends as informal caregivers. These caregivers make it possible for wounded veterans to remain at home rather than in care facilities, helping with daily activities such as bathing, dressing, physical therapy, meal preparation, and medication.

Informal caregivers are a lifeline for veterans, and a critical part of our health care system. The RAND Corporation estimates that informal caregivers for veterans save the United States millions of dollars in health care costs each year, providing in-home assistance to 5.5 million veterans. Yet time spent on caregiving takes a toll; family members are often not well trained or well supported as they care for their loved ones, and taking on a caregiver role may lead to the loss of a job or income. The role can be physically and emotionally taxing, and caregivers may feel burned out, stressed, and isolated.

Caring for a family member who is a veteran comes with unique challenges; for example, nearly two-thirds of veterans receiving support from an informal caregiver cope with mental health or substance use disorders, compared with only one-third of civilians who receive this type of care.  Nearly one-third of post-9/11 veteran caregivers are uninsured, compared with about 20% of civilian caregivers. And more than 60% of veteran caregivers say they experience financial strain because of this role, while less than 40% of civilian caregivers report a financial burden.

Recognizing the important and demanding role of informal caregivers for veterans, since 2010, the U.S. Department of Veterans Affairs (VA) has offered what it calls a Program of Comprehensive Assistance for Family Caregivers for veterans of the post-9/11 era. The program does just what it says: provides support for informal caregivers of veterans—most often spouses or other family members. Family members who serve as primary caregivers receive formal training and, importantly, financial assistance. Nearly 23,000 caregivers have signed up for the program since its inception.

Earlier this year, the program came under fire when dozens of local VA medical centers dropped caregivers from the rolls, seemingly without warning and without cause. Families who had relied on the program for years were told they were no longer eligible, even in cases where the veteran continued to require the services provided by the caregiver. In response, VA Secretary David Shulkin called for a full review of the program. Following the three-month review, the VA reported this summer that the program has resumed full operations with better processes and clarity in place to ensure that eligible families get and keep the services they need. And a new committee, chaired by former Senator Elizabeth Dole, was recently established to advise the VA on issues facing veterans’ families, caregivers, and survivors.

It’s encouraging to see this work back on track, because caregivers of military veterans need the types of assistance it provides. According to the RAND report, more than half of these caregivers say they lack a support network, which makes their jobs even more difficult. Without support, education, and training, the mental and emotional health of the caregivers themselves are at risk. They may take on a caregiver role without much preparation, and without knowing how to properly administer medication, detect and address signs of mental health distress, or deal with common ailments. And sometimes, these caregivers just need the opportunity to share their experience with someone who’s in the same boat, to vent and feel a sense of community, fellowship, and support with others who care for veteran family members. 

The VA caregiver support program offers many of these needed resources. It provides online materials about dealing with veterans’ post-traumatic stress disorder, traumatic brain injury, and other common conditions, along with peer support services such as monthly phone calls that allow caregivers to connect with each other. But only a tiny portion of the 1.1 million people caring for post-9/11 veterans are eligible for and enrolled in the program. Friends or relatives who don’t live with the veteran full time, even if they serve as the primary caregiver, are not eligible. 

Service to our country is not exclusive to those who wear the uniform. Many caregivers sacrifice their careers and free time to enrich the lives of our veterans, often to their own detriment. Organizations—both community-based and VA-based—that serve veterans must also focus on serving their caregivers. When you think about a veteran, think about a military family and how our nation can provide them all with the care they need and deserve.

Thanks to my colleague Derek Coy, a U.S. Marine veteran, for his input on this post.

Follow David Sandman on Twitter: www.twitter.com/davidsandman1