Dear Friends and Partners,
This week the Veterans’ Families, Caregivers and Survivors Federal Advisory Committee met in Washington, D.C. for our spring meeting and reviewed the response to recommendations we submitted to VA Secretary Robert Wilkie in early October. We are proud to report that the Department of Veterans Affairs has concurred in principle with all twelve recommendations, which are currently under final review.
The Committee was formed by the Secretary to explore and address gaps in services and support for Veterans’ families, caregivers, and survivors. As a Committee, our goal is to provide the VA important insight into factors affecting the access, quality and accountability of VA services offered to these populations, ensuring the VA can provide the best possible care.
The recommendations we submitted are wide-ranging and will measurably improve the daily experiences of Veterans’ families, caregivers and survivors. The Committee’s proposals include policy changes that will alleviate stress and unpredictability, reduce time spent on managing and receiving benefits, and strengthen the VA’s culture of identifying, acknowledging and supporting Veterans’ families, caregivers and survivors. Our Committee looks forward to working closely with the VA in the implementation of these initial recommendations.
These are significant steps forward for the VA and those they serve, but our work as a Committee will continue. Please reach out to me or my fellow Committee members to submit additional ideas for improving care and support for families, caregivers, and survivors.
Senator Elizabeth Dole, Founder and Chair, Elizabeth Dole Foundation
Mary “Dubbie” Buckler, Former National Secretary/Executive Director, American Legion Auxiliary
Bonnie Carroll, President and Founder, TAPS, Survivor
Melissa Comeau, Veteran Caregiver
Harriet Dominique, Senior Vice President, Corporate Responsibility and Community Affairs, USAA
Jenna Dorn, CEO, American Academy of PAs
Ellyn Dunford, Spouse of Chairman of the Joint Chiefs of Staff General Joseph F. Dunford
Sherman Gillums, Jr., Chief Strategy Officer, American
Mary M. Keller, Ed.D., President and CEO, Military Child Education Coalition
Navy Captain Robert L. Koffman, MD, MPH, Medical Director, Semper Fi Fund
MG Mike Linnington, CEO, Wounded Warrior Project
Yvonne Riley, Veteran Caregiver
Joe Robinson, Senior Vice President, Health Systems Solutions, Philips North America
Elaine Rogers, President and CEO, USO-Metro
Brigadier General (Ret.) Loree Sutton, MD, Founding Commissioner, New York City’s Department of Veterans’ Services
Secretary Francisco Urena, Massachusetts Secretary of Veterans’ Services
Shirley White, Survivor
Lee Woodruff, Co-Founder, Bob Woodruff Foundation
The Committee presented the following recommendations to the VA:
Caregivers, families and survivors have to search in too many places across the federal government for the benefits our nation promises them. This confusing and burdensome process only increases the stress and strain on their lives. Therefore, the Federal Advisory Committee recommended that the VA lead a national, government-wide interdepartmental effort to identify all federal programs serving caregivers, families, and survivors, and ensure the need and perspectives of these populations are represented. In short, the VA should organize all relevant benefits in one location and, if needed, add benefits to fill in any gaps in support.
The VA’s programs and services vary in how well they factor in the perspectives of caregivers, families and survivors. The VA should create a culture where the experiences and needs of these groups are always considered. Therefore, the Federal Advisory Committee recommended a centralized office to oversee and drive the formation of policies and programs affecting caregivers, families and survivors.
Too often, federal agencies do not take advantage of evidence-based research and opportunities for innovation. As a result, good ideas go to waste. Therefore, the Federal Advisory Committee recommended that the VA identify, fund, disseminate, and consistently apply innovations and/or replicable models to address the needs of caregivers, families, and survivors, in collaboration with non-governmental nonprofit organizations.
The VA currently has no organized way to collect and analyze data on caregivers, families and survivors. As a result, the VA is missing opportunities to provide services that directly respond to the needs of these groups. Therefore, the Federal Advisory Committee recommended that the VA develop a system-wide strategy to more comprehensively collect, analyze, disseminate, and utilize data on caregivers, families, and survivors to improve the delivery of services.
The stress and strains experienced by caregivers, family members and survivors often trickle down to their children. Supporting this vulnerable population is an endeavor that will span decades. The Federal Advisory Committee recommended extending the same system-wide strategy for collecting, analyzing, disseminating, and utilizing data on caregivers, families and survivors proposed in Recommendation 4 to the children of these populations.
Finding and taking advantage of respite care continues to be one of the biggest struggles for caregivers and families. Connecting these groups to respite care is critical because it lessens the stress of their enormous responsibilities, reduces the strain on their mental and physical health, and ultimately helps them offer better support to their veterans. Therefore, the Federal Advisory Committee recommended the VA conduct a thorough analysis of the need for respite care resources, their availability, and their effectiveness. Also, the committee recommended that the VA offer a range of respite care programs to improve access to and delivery of respite care for caregivers and family members.
Caregivers, family members and survivors frequently report feeling misunderstood or undervalued in their interactions with the VA. In part, this impression is the result of the VA lacking a strategy or guidelines for communicating to these groups. Therefore, the Federal Advisory Committee recommended that the VA develop an enterprise-wide strategic plan to ensure that VA systems and professionals are defining the importance and role of caregiving, and communicating sensitively and effectively with all caregivers, family members and survivors.
Experts have identified caregivers as the single greatest resource to improving the health and well-being of a veteran. Yet, the policies and culture of the VA often lock caregivers out of their veteran’s healthcare team. Therefore, the Federal Advisory Committee recommended the VA develop training materials and resources for VA’s interdisciplinary teams to identify veteran caregivers; integrate caregivers into the assessment and delivery of care and social services; and identify and address the unique mental health and physical needs of caregivers, family members (including children), and survivors. Caregivers should be included in the medical team from day one.
Caregivers and family members often manage their veteran’s care. They have valuable insights into their veteran’s symptoms and treatments, and the VA healthcare system overall. Therefore, the Federal Advisory Committee recommended the VA integrate veteran-designated caregivers into all relevant discussions on health record modernization, and include an official designation identifying a veteran-designated caregiver as part of a veteran’s health record.
The wide variances in the Veterans Health Administration (VHA) appeals process at the local level has caused stress and uncertainty for caregivers and family members. Therefore, the Federal Advisory Committee recommended the VA review and standardize the VHA clinical appeals process to be more transparent, and better integrate caregiver and family input.
Veterans and their caregivers participating in the VA’s Program of Comprehensive Assistance for Family Caregivers (PCAFC) are designated “Tier 1,” “Tier 2,” or “Tier 3,” depending on the level of personal care the veteran requires. These tiers are re-evaluated annually, and when a veteran and caregiver are downgraded to a lower tier, it creates a sudden loss of income and support. This re-evaluation process has been one of the largest sources of stress, financial strain and unpredictability for caregivers in recent years. Therefore, the Federal Advisory Committee recommends the VA create a 90-day adjustment period for stipend payment amounts when a tier level is lowered for veterans and their caregivers participating in the Program of Comprehensive Assistance for Family Caregivers.
The most catastrophically wounded veterans and their caregivers participating in the VA’s Program of Comprehensive Assistance for Family Caregivers (PCAFC) are required to be re-evaluated annually for the level of personal care required, even when the veteran lives with serious injuries such as amputations and paralysis that will never heal or significantly improve. These evaluations cause undue stress for veterans and caregivers, and take time away from VA healthcare providers. Therefore, the Federal Advisory Committee recommended the VA establish a clinical indication for caregivers of the most catastrophically wounded and injured veterans participating in the PCAFC to lessen the need for reassessment.
More information about the Veterans’ Families, Caregivers, and Survivors Advisory Committee can be found here.