A History of the Veterans Affairs Caregiver Support Program

by Annette M. Jennings, L.C.S.W., C.C.M.

May 9, 2023

Informal Caregivers: Civilian and Military

An informal caregiver is an unpaid person—typically a spouse, partner, family member, or friend—who helps loved ones with activities of daily living (ADLs) and medical tasks (Family Caregiver Alliance, 2016). These informal caregivers provide essential services to millions of Americans. Though their role has too often been unrecognized and unsupported, the number of informal caregivers has increased steadily in recent decades. According to a study conducted by AARP and the National Alliance for Caregiving (2020), 21.3% of Americans are caregivers, who have provided care to either an adult, or to a child with special needs within the past 12 months. This percentage translates into 53.0 million adults in 2020, an increase from 43.5 million in 2015. The economic value of services provided by informal caregivers is calculated in hundreds of billions of dollars, and has steadily increased over the last decade. Contributing factors include an aging population requiring increased care, a limited supply of formal caregivers, a preference for home and community-based services, and a higher number of individuals self-identifying as caregivers. Caregiving occurs among all generations, racial and ethnic groups, income or educational levels, family types, gender identities, and sexual orientations (AARP & National Alliance for Caregiving, 2020). 

Military caregivers, who care for wounded, ill, and injured military personnel and veterans, face unique challenges. To better understand the needs of this group, RAND Corporation conducted a comprehensive study of America’s military caregivers in 2014. The study reported that there were approximately 5.5 million military caregivers in the United States, of which post-9/11 caregivers comprise 19.6 percent (1.1 million people). Military caregivers assisting veterans who served prior to 9/11 tend to resemble civilian caregivers in many respects. However, post-9/11 military caregivers differ from their pre-9/11 and civilian counterparts in that they are typically younger and are caring for a younger person with a mental health or substance use condition. Additionally, these caregivers are more likely to be employed, not connected to a support network, and to utilize mental health resources and services (Ramchand et al., 2014).

The U.S. Department of Veterans Affairs is charged with fulfilling the nation’s promise to care for those who have served in our nation’s military, and for their families, caregivers, and survivors. In fulfillment of one aspect of that promise, the Department has developed and administers a program of caregiver support for caregivers of eligible veterans. The program’s mission is “to promote the health and well-being of family caregivers who care for our Nation’s Veterans, through education, resources, support, and services” (VA Caregiver Support Program, 2023a). 

Evolution of the Veterans Affairs Caregiver Support Program

On March 8, 2007, President George W. Bush established the President’s Commission on Care for America’s Returning Wounded Warriors, which was tasked with providing a comprehensive review of the care provided to injured military personnel returning from the wars in Afghanistan (Operation Enduring Freedom/OEF) and Iraq (Operation Iraqi Freedom/OIF) (Executive Order Number 13426, 2007, as cited in Sussman, 2020). Improvements in medical care and protective equipment in preceding decades resulted in fewer deaths on the battlefield, but greater demands on families as servicemembers returned home with more severe and more complex injuries. As compared with the Vietnam Era, during which five out of eight severely injured military personnel survived, seven out of eight combatants in OEF and OIF survived. Many of these wounded veterans had serious disabilities requiring life-long care. The commission determined that veterans’ family members and friends often serve as primary caregivers, leading some to leave their jobs or to relocate for extended periods while veterans receive treatment. In its recommendations to the Departments of Defense (DOD) and  Veterans Affairs (VA), the commission acknowledged the critical role of family caregivers by endorsing measures to strengthen family support programs, including providing “families of servicemembers who require long-term personal care with appropriate training and counseling to support them in their new caregiving roles” (Commission on Care for America’s Returning Wounded Warriors, 2007, as cited in Sussman, 2020).

In June of the following year, VA established an Interdisciplinary Caregiver Advisory Board to create a caregiver assistance program to implement relevant provisions of the Veterans Benefits, Health Care, and Information Technology Act of 2006 (P. L. 109-461). It was the job of the board to identify the primary needs of caregivers, to develop initial recommendations for VA caregiver support services, and to oversee eight caregiver assistance pilot programs (Kabat, 2018; U.S. Government Accountability Office, 2008, as cited in Sussman, 2020). The pilot programs, which concluded in August of 2009, examined means by which to improve education and to provide training and resources for caregivers of veterans (Kabat, 2018; The Veterans Benefits, Health Care, and Information Technology Act of 2006 (P.L. 109-461), 2006, as cited in Sussman, 2020). According to a VA report to Congress on the results of the pilots, they established that respite care served to reduce caregiver stress and burden, and that the use of web-based training, telephone support groups, and telehealth made it possible to better serve rural and difficult-to-access populations. The pilot programs generally resulted in “a healthier caregiver, improved care for the veteran and a better quality of life for both” (cited in S. Rep No. 113-107, 2013).

The Caregiver Support Program (CSP) was expanded following passage of the Caregivers and Veterans Omnibus Health Services Act of 2010 (P. L. 111-163). This law provided for an unprecedented level of direct services and supports for caregivers of veterans (Kabat, 2018). In addition to establishing a toll-free Caregiver Support Line (1-855-260-3274) and a website for caregivers (www.caregiver.va.gov) (Brain Injury Association of America, 2023), the legislation established two programs: a Program of General Caregiver Support Services (PGCSS) and a Program of Comprehensive Assistance for Family Caregivers (PCAFC). PGCSS offers a basic level of support emphasizing education and training to caregivers of all service eras enrolled in VA health care (Department of Veterans Affairs, 2018, as cited in Sussman, 2020). As constituted in the 2010 act, PCAFC provided a comprehensive package of services for eligible family caregivers of severely injured post-9/11 veterans to include a monthly stipend, health care benefits, travel benefits, enhanced respite care, mental health care, and training. Although it was estimated that there would be 4000 applications in the first 5 years of the program (U.S. Government Accountability Office, 2014, as cited in Van Houtven & Smith, 2022), more than 40,000 caregivers had been approved as of 2020 (Van Houtven & Smith, 2022), making PCAFC the largest public program to directly support family caregivers in the United States.

Expansion of the Program of Comprehensive Assistance for Family Caregivers (PCAFC)

Though the Caregivers and Veterans Omnibus Health Services Act of 2010 extended eligibility for PCAFC only to post-9/11 veterans, the act contained a requirement that VA submit a report to Congress examining the feasibility of expanding eligibility for PCAFC to family caregivers of veterans of previous eras. In September 2013, VA submitted to Congress the Expansion of Family Caregiver Assistance Report (Keleher, 2018; S. Rep No. 113-107, 2013), which concluded that expansion would be operationally feasible, provided that Congress allocate the necessary funding to administer the program and hire required additional staff. Expansion of PCAFC would serve to remedy the inequity inherent in P. L. 111-163, and to acknowledge the sacrifice of veterans from all eras and the needs of their caregivers.

As part of the VA Mission Act of 2018 (P. L. 115-182), Congress voted to gradually expand PCAFC to veterans of all service eras. Expansion occurred in two phases. On October 1, 2020, veterans who served on or prior to May 7, 1975, were eligible to apply for PCAFC; on October 1, 2022, those who served after May 7, 1975, and before September 11, 2001, became eligible to apply for the program (Sussman, 2020). Prior to the expansion, PCAFC eligibility extended only to those veterans who had incurred a serious injury. Following expansion, it also included veterans having a serious illness. This change made it possible for the CSP to provide services to aging veterans and their caregivers. During the period from October 2020 to May 2021, 4,000 veterans aged 60 years and older applied and had a caregiver approved for PCAFC. To accommodate the increased participation in the program, more than 1,700 full-time staff were hired (Moore, 2021). In total, during the first two years of the expansion, 20,000 additional veteran/caregiver participants were added to PCAFC (Guglielmi, 2022), resulting in an overall enrollment of about 33,000 families (Shane, 2022a).

In anticipation of the second phase of the expansion on October 1, 2022, more than 350 additional staff, including nurses, occupational therapists, and social workers, were hired in fiscal year 2022, resulting in 2325 total positions. As of August 30, 2022, 89% of all positions had been filled. Moreover, VA streamlined its approach to the PCAFC assessment process by eliminating redundancies in assessments and evaluations whenever possible. PCAFC staff have been provided with focused training on the process of conducting evaluations of PCAFC eligibility intended to standardize decision-making. Training sessions have also encouraged the identification of opportunities for referrals to other resources, both within VA and to community partners. The goal of these measures is to improve the experience of current and future participants in the Caregiver Support Program (Extension of Program of Comprehensive Assistance for Family Caregivers Eligibility for Legacy Participants and Legacy Applicants, 2022).

Legacy Participants

Expansion of PCAFC to include pre-9/11 caregivers has opened the program to many new participants. However, the revised eligibility criteria established by VA officials in 2020, prior to the initial expansion, resulted in uncertainty and the possibility of discharge from the program for “legacy participants,” those veterans and caregivers enrolled in PCAFC prior to October 1, 2020 (Kime, 2023; Shane, 2022b). As directed by the Mission Act of 2018, approximately 19,700 legacy participants were to be assessed under the new criteria to determine continued eligibility for the program. The thinking was that veterans most in need, both legacy participants and new applicants, would be assisted without significantly increasing the cost of the program. 

From the beginning, VA estimated that about 6,000 veterans would be removed from PCAFC. As the assessments proceeded, however, it became apparent that the number would be much higher, resulting in as many as 90% of legacy participants losing eligibility (Kime, 2023). Faced with the loss of income and other benefits associated with PCAFC, legacy participants enlisted the help of Congress and Veterans Service Organizations. As a result of their efforts, VA paused the legacy assessment process in 2022, and extended eligibility for legacy participants through September 30, 2025, to allow sufficient time to review the entire program. This process is expected to result in eligibility criteria that better reflect the needs of veterans and their families. During this time, VA will not discharge legacy participants or decrease support, including monthly stipend payments, based on reassessment (Kime, 2023; VA Caregiver Support Program, 2023b).

Impact on Veterans, Caregivers, and VA

The Caregiver Support Program was established in acknowledgement of the critical role that informal caregivers play in allowing veterans to remain at home. For veterans having a service-connected disability rating of 70% or higher, which is the case for all veterans enrolled in PCAFC, VA is obligated to provide nursing home care when indicated. Due to the high cost of institutional care, the CSP has resulted in significant cost savings for VA (S. Rep No. 113-107, 2013). According to the Congressional Budget Office (cited in Keleher, 2018), the average cost per patient for PCAFC is $18,300, a figure that includes both stipend payments and Civilian Health and Medical Program of VA (CHAMP VA) coverage. By comparison, long-term-care alternatives are much more expensive. In 2016, State Veteran Nursing Homes cost on average $56,042.52 per patient per year; Community Nursing Homes cost on average $101,132.20 per patient per year; and VA Community Living Centers cost on average $379,853.71 per patient per year (Keleher, 2018). Participation in PCAFC, therefore, provides a cost-effective option that is preferred over facility placement by many veterans and caregivers.

Though the majority (78%) of veteran caregivers in a 2010 National Alliance for Caregivers study (cited in  S. Rep No. 113-107, 2013) found their role  to be fulfilling, caregiving was noted to exact a financial, physical, and mental toll. Thus, the CSP seeks to alleviate these negative impacts through a robust package of supportive services. Indeed, a qualitative study of how caregivers participating in CSP use and value supportive services found that they “valued emotional, functional, and health care navigational support, calling support groups and the program coordinator their ‘lifeline’” (Bruening et al., 2020). Moreover, a study examining the relationship between PCAFC participation and caregiver well-being following enrollment, found that financial strain declined among participants, as compared to caregivers not approved for PCAFC. Additionally, though depressive symptoms did not improve for caregivers in PCAFC, they increased for caregivers who had been denied enrollment in PCAFC (Smith et al., 2019).

Current Priorities for the CSP

In March 2023, VA announced an updated version of its 1959 mission statement, which now reads: “To fulfill President Lincoln’s promise to care for those who have served in our nation’s military and for their families, caregivers, and survivors” (VA Office of Media Relations, 2023). Inclusion of caregivers in the new mission statement reflects VA’s commitment to the more than 50,000 caregivers of veterans. As further evidence of VA’s commitment, fiscal year 2023 (October 1, 2022 – September 30, 2023) has been designated as “The Year of the Caregiver.” CSP staff continue to focus on expanding PCAFC to veterans of all eras and their caregivers. In doing so, there has been an emphasis on the timely processing of applications for PCAFC.  

As of 2023, the top priorities for services to caregivers include the following:

• enhanced respite for PCAFC caregivers, which entails establishing caregiver respite liaisons to facilitate access and coordinate services
• establishment of a dedicated team of mental health professionals in collaboration with the Office of Mental Health and Suicide Prevention with the goal of supporting Primary Family Caregivers
• financial planning and legal resources for Primary Family Caregivers to be offered by a contracted vendor on a phased-implementation timeline
• Caregiver Health and Wellbeing Coaching for caregivers enrolled in both PGCSS and PCAFC that pairs caregivers with trained coaches who facilitate the development of personalized health plans reflective of caregivers’ values and needs (Campos, 2022; Veterans Health Administration (VHA) Contributor, 2022; Wolf, 2022).

As the CSP continues to grow, the program  remains focused on how best to meet the needs of veterans and caregivers. According to Dr. Colleen Richardson, Caregiver Support Program Executive Director, “From the operational aspects of the program, to the veteran and caregiver experience coming into the program, to interviewing for the program…I want to improve all of those things…I don’t want to just focus on one aspect of it, but the entire program as a whole to get where it needs to be for veterans and caregivers as we move forward” (Wolf, 2022). Indeed, having identified the vital role played by caregivers, VA is engaged in an ongoing process of identifying how best to serve these individuals, making it possible for both the caregivers and VA to fulfill their commitment to our nation’s veterans.

CSP Website

For more information about the CSP, eligibility criteria, the admission process, and caregiver resources, please visit the CSP website at www.caregiver.va.gov (VA Caregiver Support Program, 2023a).

Timeline of Important Dates in the Development of the VA Caregiver Support Program

2007: The George W. Bush administration established the President’s Commission on Care for America’s Returning Wounded Warriors, which was tasked with providing a comprehensive review of the care provided to injured military personnel returning from the Wars in Afghanistan and Iraq (Executive Order Number 13426, 2007, as cited in Sussman, 2020).

2008: VA established an Interdisciplinary Caregiver Advisory Board to create a caregiver assistance program to implement relevant provisions of the Veterans Benefits, Health Care, and Information Technology Act of 2006 (P. L. 109-461). It was the job of the board to identify the primary needs of caregivers, to develop initial recommendations for VA caregiver support services, and to oversee eight caregiver assistance pilot programs (Kabat, 2018; U.S. Government Accountability Office, 2008, as cited in Sussman, 2020).

2010: The Caregiver Support Program (CSP) was expanded following passage of the Caregivers and Veterans Omnibus Health Services Act of 2010 (P. L. 111-163). This law provided for an unprecedented level of direct services and supports for caregivers of veterans (Kabat, 2018). In addition to establishing a toll-free Caregiver Support Line (1-855-260-3274) and a website for caregivers (www.caregiver.va.gov) (Brain Injury Association of America, 2023), the legislation established a Program of General Caregiver Support Services (PGCSS) and a Program of Comprehensive Assistance for Family Caregivers (PCAFC).

2013: VA submitted to Congress the Expansion of Family Caregiver Assistance Report (Keleher, 2018; S. Rep No. 113-107, 2013), which concluded that expansion of PCAFC to include caregivers of pre-9/11 veterans would be operationally feasible, provided that Congress allocate the necessary funding to administer the program and hire required additional staff. Expansion of PCAFC would serve to remedy the inequity inherent in P. L. 111-163 and to acknowledge the sacrifice of veterans from all eras and the needs of their caregivers.

2018: As part of the VA Mission Act of 2018 (P. L. 115-182), Congress voted to gradually expand PCAFC to veterans of all service eras (Sussman, 2020).

2020: As directed by the VA Mission Act of 2018, on October 1, 2020, veterans who served on or prior to May 7, 1975, were eligible to apply for PCAFC (Sussman, 2020).

2022: As directed by the VA Mission Act of 2018, on October 1, 2022, veterans who served after May 7, 1975, and before September 11, 2001, became eligible to apply for PCAFC (Sussman, 2020).

References

AARP & National Alliance for Caregiving. Caregiving in the United States 2020. https://www.aarp.org/ppi/info-2020/caregiving-in-the-united-states.html

Brain Injury Association of America. (2023). Caregivers and Veterans Omnibus Health Services Act of 2010. https://www.biausa.org/public-affairs/public-policy/caregivers-and-veterans-omnibus-health-services-act-of-2010

Bruening, R., Sperber, N., Miller, K., Andrews, S., Steinhauser, K., Wieland, G. D., Lindquist, J., Shepherd-Banigan, M., Ramos, K., Henius, J., Kabat, M., & Van Houtven, C. (2020). Connecting caregivers to support: Lessons learned from the VA Caregiver Support Program. Journal of Applied Gerontology, 39(4), 368-376.  https://doi.org/10.1177/0733464818825050

Campos, R. (2022, November 22). Improvements to VA Caregiver Program continue: Here’s what to expect. https://www.moaa.org/content/publications-and-media/news-articles/2022-news-articles/advocacy/improvements-to-va-caregiver-program-continue-heres-what-to-expect/

Extension of Program of Comprehensive Assistance for Family Caregivers Eligibility for Legacy Participants and Legacy Applicants; A Rule by the Veterans Affairs Department, 87 FR 57602 (September 21, 2022) (to be codified at 38 C.F.R. 71). https://www.federalregister.gov/regulations/2900-AR28/extension-of-program-of-comprehensive-assistance-for-family-caregivers-eligibility-for-legacy-partic)

Family Caregiver Alliance. (2016). Caregiver Statistics: Demographics. https://www.caregiver.org/resource/caregiver-statistics-demographics/

Guglielmi, J. (2022, November 10). VA program of Comprehensive Assistance for Family Caregivers expands to veterans of all eras. https://www.greensburgdailynews.com/tncms/asset/editorial/032d8ada-5486-11ed-8a96-7f63a9047e33/

Kabat, M. (2018, March 15). Empowering caregivers as a force multiplier for better health and wellbeing [Presentation]. National Alliance of Healthcare Purchaser Coalitions, Dallas, TX. https://www.nationalalliancehealth.org/2018leadershipsummits/2018presentations

Keleher, K. (2018, February 06). VA Caregiver Support Program: Correcting course for veteran caregivers. https://www.vfw.org/advocacy/national-legislative-service/congressional-testimony/2018/2/va-caregiver-support-program-correcting-course-for-veteran-caregivers

Kime, P. (2023, February21). Supreme Court rejects case tied to families being removed from VA Caregiver Program. https://www.military.com/daily-news/2023/02/21/supreme-court-rejects-case-tied-families-being-removed-va-caregiver-program.html

Moore, E. (2021, May 13). Expanding comprehensive assistance for family caregivers. https://news.va.gov/88481/expanding-comprehensive-assistance-family-caregivers/

Ramchand,R., Tanielian,T., Fisher, M.P., Vaughan, C.A., Trail, T.E., Batka, C., Voorhies, P., Robbins, M. W., Robinson, E., & Ghosh-Dastidar, B. (2014). Hidden heroes: America’s military caregivers. RAND Corporation. https://www.rand.org/pubs/research_reports/RR499.html

S. Rep No. 113-107 (2013). https://www.congress.gov/congressional-report/113th-congress/senate-report/107/1

Shane, Leo. (2022a, July 25). Expansion of VA caregiver program to all eras of service remains set for October. https://www.militarytimes.com/veterans/2022/07/25/expansion-of-va-caregiver-program-to-all-eras-of-service-remains-set-for-october/

Shane, Leo. (2022b, March 25). VA’s caregiver review would’ve booted 90% of young vets from program. https://www.militarytimes.com/veterans/2022/03/25/vas-caregiver-review-wouldve-booted-90-of-young-vets-from-program/

Smith, V. A., Lindquist, J., Miller, K.E.M., Shepherd-Banigan, M., Olsen, M., Campbell-Kotler, M., Henius, J., Kabat, M., & Van Houtven, C. H. (2019). Comprehensive family caregiver support and caregiver well-being: Preliminary evidence from a pre-post-survey study with a non-equivalent control group. Frontiers in Public Health, 7. https://doi.org/10.3389/fpubh.2019.00122

Sussman, J. S. (2020). Department of Veterans Affairs: Caregiver Support (R46282). Congressional Research Service. https://www.everycrsreport.com/reports/R46282.html

VA Caregiver Support Program. (2023a). https://www.caregiver.va.gov

VA Caregiver Support Program. (2023b, February 9). Good news for veterans and caregivers.     https://www.news.va.gov/115526/good-news-for-veterans-and-caregivers

VA Office of Media Relations. (2023, March 17). New VA Mission Statement recognizes sacred commitment to all veterans, their families, caregivers and survivors. https://www.news.va.gov/117260/new-mission-statement-commitment-all-veterans/

Van Houtven, C. H., & Smith, V. A. (2022). Predictors of discharge from the VA Caregiver Support Program. The American Journal of Managed Care, 28(8). https://www.ajmc.com/view/predictors-of-discharge-from-the-va-caregiver-support-program

Veterans Health Administration (VHA) Contributor (2022, September 22). Caregiver Support Program coaching broadens services to caregivers. https://news.va.gov/108855/caregiver-support-program-coaching-broadens-services-to-caregivers/

 Wolf, M. (2022, July 17). Caring for caregivers. https://www.legion.org/veteranshealthcare/256255/caring-caregivers

For Further Reading

Griffin, J. M., Friedemann-Sanchez, G., Jensen, A. C., Taylor, B. C., Gravely, A., Clothier, B., Simon, A. B., Bangerter, A., Pickett, T., Thors, C., Ceperich, S., Poole, J., & van Ryn, M. (2012). The invisible side of war: Families caring for U.S. service members with traumatic brain injuries and polytrauma. Journal of Head Trauma Rehabilitation, 27(1), 3-13. https://journals.lww.com/headtraumarehab/Abstract/2012/01000/The_Invisible_Side_of_War_Families_Caring_for_US.2.aspx

Strong, J. D., Akin, J. L., Hunt, K. D., Bates, C., Brazer, D. S., Howell, K., Olsen, J., Tobias, L. S., Maury, R. V., Linsner, M. S., & Harvie, J. Y. (2021). Caregiving in military families: 2020 military family lifestyle survey special report. Blue Star Families. https:/bluestarfam.org/wp-content/uploads/2021/06/BSF_RCI_Caregiving_Report_2021.pdf

Van Houtven, C. H., Smith, V. A., Stechuchak, K. M., Shepherd-Banigan, M., Hastings, S. N., Maciejewski, M. L., Wieland, G. D., Olsen, M. K., Miller, K. E. M., Kabat, M., Henius, J., Campbell-Kotler, M., & Oddone, E. Z. (2017). Comprehensive support for family caregivers: Impact on veteran health care utilization and costs. Medical Care Research and Review, 76(1). https://journals.sagepub.com/doi/full/10.1177/1077558717697015

Wyse, J. J., Ono, S. S., Kabat, M., & True, G. (2020). Supporting family caregivers of veterans: Participant perceptions of a federally-mandated caregiver support program. Healthcare, 8(3). https://doi.org/10.1016/j.hjdsi.2020.100441

Annette M. Jennings is the recipient of a 2023 VCU Publishing Research Award.