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"Everyday Heroes: Supporting the Veteran Caregiver Community"

House Veterans Affairs Committee Hearing

September 25, 2024 (recording here)

HEARING INFORMATION

Witnesses & Written Testimony (linked) (Panel One):

• Dr. Colleen Richardson, Psy.D.: Executive Director, Caregiver Support Program, U.S. Department of Veterans Affairs, tive Director, Caregiver Support Program Veterans Health Administration

• Ms. Laura Duke: Chief Financial Officer, U.S. Department of Veterans Affairs, Veterans Health Administration

Witnesses & Written Testimony (linked) (Panel Two):

• Dr. Rajeev Ramchand: Senior Behavioral Scientist and Codirector, RAND Epstein Family Veterans Research Institute

• Mr. Steve Schwab: CEO, Elizabeth Dole Foundation (EDF)

• Ms. Vanessa Chism: Elizabeth Dole Caregiver Fellow

• Mr. Troy Broussard: State Director, AARP

• Mr. Jonathan Pruden: Special Advisor to the Chief of Staff – Warrior Care, Wounded Warrior Project

Keywords mentioned:

• Caregivers, mental health, respite care, budget shortfall, eligibility criteria, telehealth, outreach, support services, Dole Act

IN THEIR WORDS

OPENING STATEMENTS FROM THE COMMITTEE

• Chairman Mike Bost welcomed the witnesses and acknowledged the Gold Star families in attendance in recognition of their sacrifices. He outlined the critical role of veteran caregivers, underscoring the emotional, financial, and physical burdens they often endure. The Chairman referenced a recent RAND Corporation report that examined the challenges faced by caregivers, particularly the lack of mental health resources and isolation. He also criticized the administration for delaying changes to caregiver support programs and urged swift action on legislation like the Dole Act to expand support services for caregivers.

• Ranking Member Mark Takano acknowledged the indispensable role of caregivers in the healthcare system, supporting veterans with both visible and invisible wounds of war. He outlined the daily sacrifices caregivers make, often at the cost of their own well-being, while navigating complex bureaucratic systems. The Ranking Member expressed eagerness to hear from experts and witnesses about the evolving needs of military caregivers, and he stressed the need for the VA to balance resources between direct and community care services for veterans.

SUMMARY OF KEY POINTS (PANEL ONE)

• Dr. Colleen Richardson spoke of her personal connection to the caregiver community as a Navy veteran and former caregiver. She articulated the program’s mission to provide comprehensive support, education, and services to caregivers through various initiatives. Dr. Richardson pointed to recent successes, including increased respite care usage, the implementation of a virtual psychotherapy program, and the expansion of CPR training for caregivers. She acknowledged that while progress has been made, significant work is still needed to improve the eligibility and evaluation criteria for caregiver programs. She also noted that proposed rule changes are currently under review.

• Chairman Bost began by asking why the VA had delayed publishing the pending Program of Comprehensive Assistance for Family Caregivers (PCAFC) proposal rule for two years. Dr. Richardson explained that the VA had taken the time to gather feedback from veterans service organizations (VSOs), external partners, and caregivers to ensure the program was implemented correctly. She confirmed that the notice of proposed rulemaking had been submitted to the Office of Management and Budget (OMB).

• The Chairman followed up by inquiring about the challenges caregivers in Illinois were facing in accessing respite care and how the VA planned to improve access. Dr. Richardson acknowledged the low utilization of respite care when she joined, with only 7% of the budget being used. She described the steps the VA had taken, including staff training and conducting listening sessions, which led to a significant increase in utilization.

• Chairman Bost also directed a question to Ms. Laura Duke regarding the VHA budget shortfall, asking why the request was made through the Toxic Exposures Fund (TEF) account instead of regular accounts. Ms. Duke responded that the TEF was created to ensure proper funding for veterans with toxic exposure, and if Congress approved the shortfall request, the funds would be allocated for care needs in 2025.

• Ranking Member Takano questioned Dr. Richardson about the percentage of Family Caregiver Program participants who had been served with respite care and how much of that care was provided in-house versus by private sector providers. Dr. Richardson confirmed that most respite care was contracted out to community providers but mentioned a pilot program called Veteran Directed Care (VDC) Respite being tested at 11 sites. This program would allow caregivers to use people they know for respite care.

• Ranking Member Takano followed up by referencing Ms. Vanessa Chism's testimony, in which she reported not receiving respite care in 12 years. Dr. Richardson explained that the VA had trained 18 champions across the country to address respite care needs and that they were working to improve access.

• Rep. Matt Rosendale directed a question to Dr. Richardson regarding caregiver training, citing the RAND report that described caregivers feeling underprepared. Dr. Richardson responded by discussing the VA's efforts through listening sessions and surveys, which led to the implementation of training programs including CPR and specialized support based on different veteran needs. She also mentioned the upcoming addition of diabetic emergency training and mobility transfer resources for caregivers.

• Rep. Julia Brownley brought up the suspension of eligibility reassessments in the Family Caregiver Program and asked if the Elizabeth Dole Home Care Act would help provide a successful transition for legacy caregivers. Dr. Richardson acknowledged the bill but refrained from providing a direct assessment, deferring to the VHA's official stance.

• Rep. Brownley then asked why Ms. Chism had been unable to access respite care for 12 years. Dr. Richardson admitted that the situation was unacceptable and explained that the VA had focused on addressing these issues through the respite champions initiative.

• Rep. Mariannette Miller-Meeks asked Ms. Duke about the VA’s request for $1 billion for high-cost drugs, particularly focusing on the round number and whether it was based on an estimate or anticipation of growing demand for medications like diabetes and weight-loss drugs. Ms. Duke explained that the $1 billion estimate was based on the growing fiscal pressure due to high-cost drugs and pharmacy growth. The VA wanted to ensure they were transparent about the needs and did not have to make budget trade-offs next year.

• Rep. Miller-Meeks raised concerns about the VA's initial budget assumption that community care spending would shrink from 14.8% to 12%, given that many veterans prefer to receive care at home or through community providers. She asked why the VA had underestimated community care demand. Ms. Duke clarified that the VA had not anticipated a shrink in the community care program but rather a slower rate of growth. However, the program's growth was readjusted as demand for community care services increased.

• Rep. Chris Pappas asked Dr. Richardson about the support available for caregivers transitioning to survivor roles after a veteran passes away, noting that many were unaware of available resources. Dr. Richardson explained that the VA had a survivor program, and she acknowledged that more collaboration was needed to better support caregivers during this transition.

• Rep. Pappas then inquired about financial assistance for caregivers. Dr. Richardson noted that the PCAFC offered financial and legal services, including support for budgeting and planning, to help caregivers manage their finances. She also detailed plans to expand peer support mentoring programs, as well as virtual services like coaching and well-being programs tailored to caregivers.

• Rep. Greg Murphy asked whether the PACT Act had contributed to the VA's budget deficit, given the expanded eligibility and increased demand for services. Ms. Duke confirmed that the PACT Act had led to an increase in new enrollees and more veterans using VA services, which caused the VA to revise its budget estimates.

• Rep. Murphy then shifted to Dr. Richardson, asking about the low participation of caregivers in VA programs. Dr. Richardson responded that the VA had hired an outreach specialist and partnered with local facilities to raise awareness. She noted a significant increase in applications, especially in August, indicating that outreach efforts were starting to show results.

• Rep. Murphy also asked about mental health challenges among caregivers, particularly depression and isolation. Dr. Richardson explained that the VA offers virtual psychotherapy, peer mentoring, and non-traditional support services like yoga and mindfulness to address these issues. She noted that peer support is being expanded nationwide.

• Rep. Greg Landsman questioned Dr. Richardson about the lack of publicly available data collected during the two-year evaluation of PCAFC eligibility. He emphasized the importance of continuous improvement and transparency. Dr. Richardson explained that while eligibility criteria were under review, the VA had implemented surveys and a quality management team to ensure consistency across facilities. She acknowledged the need to make the data publicly available to better inform policymakers and improve services.

• Rep. Derrick Van Orden raised concerns about the lack of awareness regarding caregiver programs. Dr. Richardson admitted that many caregivers do not realize they are eligible for support and agreed that more education and outreach are needed.

• Rep. Van Orden also suggested that caregiver compensation should reflect each state's median income to better support caregivers. Dr. Richardson responded that compensation under PCAFC is based on a GS-4 pay scale, but she agreed that it could be beneficial to review the compensation structure to ensure caregivers feel valued and adequately supported.

• Rep. Nikki Budzinski asked about the challenges faced by rural caregivers, specifically those without reliable broadband access. Dr. Richardson mentioned the VA's "digital divide" consult, which provides devices to rural caregivers, though she noted it was underutilized. She also stated that the VA was working to increase in-person services and better communicate available programs to rural communities.

• Rep. Budzinski followed up by asking about the mental health support provided to caregivers dealing with high rates of stress and burnout. Dr. Richardson explained that the VA offers virtual psychotherapy and other evidence-based treatments specifically designed to improve caregivers' quality of life and reduce depression and anxiety.

• Rep. Keith Self shifted the focus to the VA's budget shortfall, asking Ms. Duke to clarify what the "non-pay" categories in the $12 billion shortfall represented. Ms. Duke explained that "other contractual services" included clinical contracts and staff supplementation, while equipment expenses were determined locally.

• Rep. Self also inquired about the rising cost of prosthetics and the impact of emerging technologies. Ms. Duke responded that increasing veteran enrollment and inflation, as well as procurement challenges, were driving up prosthetics costs.

• Rep. Sheila Cherfilus-McCormick asked Dr. Richardson whether caregivers earning stipends through PCAFC receive Social Security credits. Dr. Richardson confirmed they do not.

• Rep. Cherfilus-McCormick also expressed concern about the VA’s delay in publishing new PCAFC eligibility regulations, which has left many families in limbo since 2022. Dr. Richardson explained that the eligibility criteria had been revised under the 2018 MISSION Act, and the VA had been reviewing the criteria for two years. She noted that the proposed rule had been submitted to the OMB and assured the Committee that the VA was committed to expediting the process and ensuring caregivers are informed about the new eligibility criteria.

• Rep. Juan Ciscomani began by emphasizing the importance of supporting caregivers, particularly in rural areas, and asked about the issues rural caregivers face in accessing respite care. Dr. Richardson responded by mentioning the VA’s efforts to improve access, including the hiring of respite champions and the implementation of a VDC pilot at 11 sites, six of which are in rural areas. Rep. Ciscomani expressed concern about the effectiveness of these initiatives and requested updates on their progress.

• Rep. Ciscomani also asked if the PCAFC program includes workforce reintegration support for caregivers. Dr. Richardson confirmed that it currently does not but suggested that there might be an opportunity to integrate caregivers’ unique skills into future programs.

• Rep. Morgan McGarvey asked Dr. Richardson about the challenges caregivers face in navigating and accessing VA services. She referenced the RAND report that found caregivers of veterans under 60 face higher risks of depression and often lack backup care.

• Rep. McGarvey pointed out a tech-enabled respite home care pilot that allowed veterans to choose their own trained caregivers, resulting in higher wages, lower costs, and better care. He asked if the VA had plans to expand this pilot. Dr. Richardson agreed that it was a valuable initiative and promised to follow up with the Office of Geriatrics and Extended Care (GEC) to explore potential expansion.

• Rep. Jen Kiggans asked Dr. Richardson about the impact of medical personnel shortages on caregiver training programs and the potential for expanding scholarships or financial incentives for healthcare workers like CNAs and LPNs. Dr. Richardson confirmed that while the VA offers incentives through VHA, the Caregiver Support Program does not directly provide scholarships.

• Rep. Kiggans then asked about improving communication with families and providers about available resources. Dr. Richardson acknowledged the need for better collaboration with primary care providers and mentioned that wellness contacts conducted in caregivers’ homes often help identify unmet needs. Rep. Kiggans suggested that VA outreach efforts to civilian primary care providers would be beneficial, particularly in districts with large veteran populations.

• Rep. Kiggans also raised concerns about the increasing number of elderly veterans and the growing strain on caregivers. Dr. Richardson explained that caregivers for older veterans often face challenges due to their own health limitations, while younger caregivers juggle work and family responsibilities.

• Rep. Tim Kennedy asked Ms. Duke about the VA’s hiring trends since the passage of the PACT Act, questioning whether there had been an increase or decrease in staffing. Ms. Duke clarified that staffing levels had increased, though the VA had not yet hired the additional 5,000 workers anticipated. She claimed that the VA had been able to respond to the increased need for care, but the resources allocated were insufficient to sustain this growth without the additional $12 billion in funding requested for 2025. Rep. Kennedy underscored the urgency of securing this funding, noting that without it, the VA would struggle to keep its promise to veterans.

SUMMARY OF KEY POINTS (PANEL TWO)

• Dr. Rajeev Ramchand shared findings from a new RAND report titled "America's Military and Veteran Caregivers: Hidden Heroes Emerging from the Shadows." He explained that the study identified 14.3 million military and veteran caregivers, a number higher than previous estimates due to the inclusion of those who do not self-identify as caregivers. He mentioned the emotional and financial toll on caregivers, especially those caring for veterans with mental health or substance use issues. Dr. Ramchand advocated for policies that better recognize and support these caregivers, including expanding mental health care, telehealth, and financial assistance programs like tax credits.

• Mr. Steve Schwab praised the more than 60 Dole Caregiver Fellows present at the hearing and stressed the importance of supporting military and veteran caregivers. He raised concerns about the VHA’s budget shortfall, noting that it threatens critical services like respite care and staffing for programs that connect veterans and caregivers to resources. Mr. Schwab called for the passage of the Elizabeth Dole Home Care Act, which would expand home-based care for veterans and remove spending caps on in-home care services. He urged for continued congressional oversight to ensure veterans and caregivers receive the services they need.

• Ms. Vanessa Chism, a caregiver for her husband, shared her personal story of navigating her husband’s complex medical conditions including PTSD, traumatic brain injuries, and chronic traumatic encephalopathy. Despite being a legacy participant in the VA’s PCAFC program, Ms. Chism described difficulties in accessing respite care and community care services, stressing that her children have had to step in as secondary caregivers. She voiced concern over the uncertain future of the PCAFC legacy participants, who are awaiting decisions about their continued eligibility.

• Mr. Troy Broussard testified about the critical role caregivers play in supporting veterans at home, often handling complex medical tasks. He noted that family caregivers of veterans spend an average of $11,000 per year out of pocket, significantly more than non-veteran caregivers. Mr. Broussard called for greater government support for caregivers, including tax credits and streamlined access to benefits across agencies like the VA, Medicare, and Social Security. He also highlighted the advocacy work AARP is doing in Kentucky to improve access to home care, broadband, and resources for veteran caregivers.

• Mr. Jonathan Pruden spoke about the indispensable role caregivers play in the lives of wounded veterans, especially those with severe injuries or neurological conditions. He noted key provisions in the Elizabeth Dole 21st Century Veterans Health Care and Benefits Improvement Act, including expanding home and community-based services and providing mental health support for caregivers. Mr. Pruden emphasized the need for better respite care access and long-term planning for aging caregivers. He also urged Congress to address the financial burden on caregivers and ensure that the regulatory pause in the PCAFC program is resolved to provide stability for caregivers and their families.

• Chairman Bost asked about the immediate impact of passing the Dole Act. Mr. Schwab emphasized that the bill would expand critical programs like the VDC and increase reimbursement rates, providing financial relief to caregivers. Ms. Chism shared her biggest obstacle in accessing VA services, explaining that many VA employees are uninformed about the programs, creating delays and challenges in getting respite care. Mr. Pruden said that the VA needs better rehabilitation access and case coordination to improve caregiver support, especially during veteran crises.

• Rep. Brownley turned to Dr. Ramshad, addressing the report’s findings that younger caregivers experience high rates of depression and are less likely to seek help. Dr. Ramchand suggested expanding mental health care accessibility through telehealth and integrated care models to better meet caregivers' needs.

• Rep. Brownley also asked about suicide risk among caregivers, raising concern for their mental health and financial security. Mr. Broussard explained how Oklahoma and Nebraska have implemented tax credits for caregivers, and Rep. Brownley supported the idea of implementing similar federal credits. Dr. Ramchand clarified that the average financial strain for caregivers was driven by lost income due to work disruptions.

• Ranking Member Takano discussed the financial challenges of earning no Social Security credits. He suggested working on a fix for this issue and asked Dr. Ramchand how the VA could expand its definition of caregiver to include those helping veterans with substance use or mental health conditions. Dr. Ramchand recommended more research and developing empirical models to quantify these caregiving tasks.

• Rep. McGarvey asked about innovative caregiving models that could be tested by the VA. Mr. Broussard suggested the VA could test tax credits and self-directed care models, while Dr. Ramchand advocated for more mental health and cognitive support pilot programs. Mr. Schwab stressed expanding respite care options, such as the Dole Foundation’s flexible respite program, as a model for the VA to adopt.

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