Mr. Chairman and Members of the Subcommittee:

Thank you for inviting the Disabled American Veterans (DAV) to testify at this hearing to consider care and support programs by the Department of Veterans Affairs (VA) for personal caregivers of severely disabled veterans, with a special focus on examining the need to provide mental health treatment for family members of veterans dealing with serious physical injuries and or post-deployment readjustment issues.  We are pleased to appear before the Subcommittee today to discuss this timely and important topic. 

Mr. Chairman, as an organization of 1.3 million service-disabled veterans, DAV has a growing concern about the effects of wartime exposures we are seeing in the newest generation of disabled veterans of the wars in Iraq and Afghanistan.  Reflecting the current challenges in military service, specifically, frequent multiple deployments for many service members, and the stress-related mental health conditions resulting from wartime experiences and inadequate rest between deployments, we believe these disabled veterans and their families have some new and unique needs that Congress should address to enable VA to begin meeting them. 

Many severely wounded and disabled veterans require continuous and intensive family caregiver support that may last from a few months to many years, to a lifetime depending on individual circumstances.  In most of these cases, a spouse, parent or other family member, or significant other assumes the role of primary caregiver, often leaving behind jobs, college or other personal goals and responsibilities.  The impact of service-related polytraumatic injuries and mental health problems exact a severe toll not only on the veteran but on military and veteran family members as well.  Currently VA has limited authority to provide caregiver assistance, counseling and related services but lacks a comprehensive and cohesive program to ensure these families receive adequate support.  The one exception is VA’s spinal cord injury program, which we believe could serve as an excellent model for poly-traumatic injured veterans and their families. 

In that exceptional program, family members of spinal cord injured veterans are properly educated and trained to deal with symptoms of, and how to live with someone who has experienced this type of devastating injury.  This type of program could easily be adapted to veterans who have poly-trauma including traumatic brain injury (TBI), post-traumatic stress disorder (PTSD,) depression and or anxiety disorders, substance-use disorders, and other post-deployment mental health problems.  If left untreated, these conditions can destroy marriages and ultimately separate families, and even result in homelessness and criminal convictions.  When such breakdowns occur, these disabled veterans have the potential to become more dependent on VA and other public agencies to provide substitute services, with higher costs and more social consequences for them and society as a whole.  Likewise, during this transitional period caregivers themselves are at risk for stress-related mental health disorders and adverse physical health effects.  For this reason, we support and recommend that Congress authorize, and VA should be required and funded to provide, a full range of psychological and social support services as an earned benefit to family caregivers of severely injured and ill veterans.  At a minimum, this benefit should include relationship and marriage counseling, family counseling, technical training and related assistance for the families coping with the stress and continuous psychological burden of caring for a severely injured or permanently disabled veteran.  VA should provide such services at every medical center and substantial community-based outpatient clinic.  When warranted by circumstances, these services should be made available through other means, including the use of tele-mental health technology and the Internet.  When necessary because of scarcity or rural access challenges, VA's local adaptations should include consideration of the use of competent, trained community providers on a fee or contract basis to address the needs of these families. 

We note that in December 2007, VA announced that it would dedicate $4.7 million to help caregivers through a variety of caregiver assistance pilot programs at VA medical centers across the country.  These programs are intended to help expand and improve health care education and provide needed training and resources for caregivers who assist disabled and aging veterans in their homes.  VA reported the key services provided to caregivers are: transportation, respite care, case management and service coordination, assistance with personal care related to activities of daily living, social and emotional support, and home safety evaluations.  VA also notes that caregivers are taught skills such as time management techniques, medication management, communication skills with the medical staff and the veteran, and ways to take better care of themselves.  We are pleased that VA has initiated these important programs and we look forward to a report on their effectiveness and consumer satisfaction rates.  We recommend that VA expeditiously develop a long-term comprehensive program based on the best-practices garnered from these pilot programs.  We are encouraged that many of the projects use technology, including computers, Web-based training, video conferencing and teleconferencing to support the needs of caregivers who often cannot leave their homes to participate in support activities. 

Gaps in services and the issue of more fully addressing the needs of caregivers has also been discussed in the President’s Commission on Care for America’s Returning Wounded Warriors (Dole/Shalala) and the Veterans Disability Benefits Commission (VDBC).  Recommendations from these Commissions include: extending TRICARE coverage for respite and aid and attendance benefits for seriously injured service members; extending the Family Medical Leave Act coverage to family members of a veteran who has a combat-related injury; the need for additional caregiver training and counseling for family members of seriously injured veterans; extension of the Civilian Health and Medical Program of the Department of Veterans Affairs or CHAMPVA program and creation of a “caregiver allowance” for caregivers of severely injured disabled veterans. 

The main direct health benefit that accrues to family members of seriously disabled veterans is through CHAMPVA.  This program provides health insurance coverage for immediate dependent family members of veterans with disabilities that are permanent and total in nature, and survivors of veterans who die from service-connected disabilities, provided they are not eligible for health benefits under the Department of Defense (DoD) TRICARE program.  Within CHAMPVA the so-called in-house treatment initiative or "CITI" program allows family members to use VA medical centers for their care on a voluntary basis, but we understand this program has been nearly phased out in most areas due to lack of available capacity.  Other than CHAMPVA, care for immediate family members is limited to care or treatment that furthers treatment goals for veterans under VA care, and bereavement counseling for dependent survivors of a servicemember who dies on active duty.  Travel and transportation benefits are restricted to dependents who are CHAMPVA beneficiaries, and to immediate family members receiving counseling, treatment or education on behalf of a veteran who has a service-connected disability.  As noted in the VDBC recommendations, expansion of the CHAMPVA program could benefit primary caregivers of veterans with lower rated service-connected conditions such as mild to moderate TBI but who need constant supervision of a caregiver to help with personal care, daily living skills, attending medical and rehabilitation appointments and emotional and advocacy support. 

As direct caregivers, immediate family members of severely injured or ill veterans of Operations Iraqi and Enduring Freedom (OIF/OEF) face daunting challenges while serving in this unique role.  They must cope simultaneously with the complex physical, emotional and mental health issues of the severely wounded or ill veteran, plus deal with the complexities of the systems of care that these veterans must rely on.  At the same time, they struggle with disruption of family life, interruptions of personal and professional goals, employment, and dissolution of other "normal" support systems that existed beforehand—all because of the changed circumstances resulting from the veteran's injuries and illnesses.  We discussed these challenges in the Family and Caregiver Support Issues Affecting Severely Injured Veterans section of the Independent Budget for FY 2009 and refer the Subcommittee to that section for more detail. 

Beyond the need for mental health services for family caregivers we agree that as early as practicable every family of a severely injured or ill veteran from OIF/OEF should be assigned a trained, knowledgeable and professional advocate.  The advocate's essential function should coordinate military, VA and other federal programs that provide services, benefits and family support services, including inpatient, specialty and primary care, mental health care and counseling for veterans and, where needed, family caregivers—rehabilitation, transition and community reintegration assistance, home care, respite care, vocational services, financial services, and child care services.  The advocate should be assigned to support each severely disabled veteran for as long as services are required for the family.  We note VA’s appointment of 100 “patient advocate” positions and recent announcement of the appointment of ten “recovery coordinators,” and appreciate this development and urge additional personnel be assigned to such duties for recently separated disabled veterans as necessary.  However, unless a restructured more flexible system of benefits for caregivers is authorized by Congress, we are concerned that these advocates and recovery coordinators may not focus on family-support issues to the extent warranted by their situations. 

DAV believes that a strong case management system should be designed to promote a smooth and transparent handoff of severely injured and ill veterans and their family caregivers between DoD and VA facilities.  This case management system should be held accountable to ensure uninterrupted support as these veterans return home, when and where family caregivers become their critical link to VA services. 

With the wars in Iraq and Afghanistan the demographics, family dynamics and cultural expectations of disabled veterans and their families have changed—and so too should the VA benefits and services package.  A severely injured veteran's spouse is likely to be young, have dependent children, and reside in a rural area where access to support services of any kind can be limited.  An increasing number of the severely injured are from Reserve components.  Their families likely have never lived on military bases and do not have access to the numerous and often vibrant social support services and networks connected with military life, such as the DoD Family Advocacy Program.  That program, available only to active duty personnel, pays for counseling for military service members, for services such as counseling for school truancy of their children, provides a variety of counseling and care services for emotional and behavioral problems within families, and is a source of emotional support to families at home during service members’ long deployments overseas.  Many parents and siblings are included in pre and post-deployment counseling and reintegration programs by the military services advocacy centers.  However, no equivalent VA program exists for veterans, even severely service-disabled veterans.  While the circumstances of a military family during deployments are dissimilar to that of families of severely disabled veterans, the changed conditions in these families warrant a new program with similar aims: to care for and comfort these families, and provide relevant and specialized support and counseling services when they need them. 

As indicated earlier in this testimony, spouses must often give up their own employment (or withdraw from school in many cases) to care for, attend, and advocate for the seriously injured or ill veteran.  This can have a direct impact on their long-term earnings capacity for retirement and other benefits.  Caregivers also often fall victim to bureaucratic mishaps in the shifting responsibility for conflicting government pay and compensation systems (military pay, military disability pay, military retirement pay, VA disability compensation and Social Security Disability benefits) that they must rely upon for subsistence in absence of other personal income or savings.  Additionally, for many younger, unmarried disabled veterans their primary caregivers remain their parents, who have limited eligibility for military assistance, often are on limited incomes themselves, and have very limited eligibility for VA benefits or services of any kind.  They, too, face the same dilemmas as spouses of severely injured or disabled veterans, and we believe Congress should also address the needs of parents who have returned to the basic caregiver role for their severely injured or ill children.  

Immediate family caregivers (including parents in many cases) must cope with tremendous personal stress.  Unfortunately, the government support systems they may need are limited or restricted, often informal, and are clearly inadequate for the long term.  Within the military itself, TRICARE mental health benefits are reported to be inadequate.  In VA, the spouse of an enrolled veteran is eligible for limited VA mental health services and counseling but only as a so-called "collateral" of the veteran.  Outside the VA's readjustment counseling services program or VET Centers—such services are infrequent across the VA health care system.  We understand that one place mental health services are being provided for family members are at VA polytrauma centers.  VA clinicians indicate that they are providing a significant amount of training, instruction and counseling to spouses and parents of severely wounded or ill veterans who are already attending to these veterans during their hospitalizations.  However, local VA officials are concerned about the absence of legal authority to provide these services to family members, and that scarce resources that are needed elsewhere are being diverted to these needs, without recognition in VA's internal resource allocation system.  Thus, medical centers devoting resources to family caregiver support are penalizing themselves in doing so, but they clearly have recognized the urgency of this need and are trying to meet it, despite these concerns.  We believe Congress must provide clear permanent authority in the law so that these services can be provided throughout the system when needed. 

The most seriously injured or ill veterans and their families embark on a very long and often difficult journey together.  Without question—these family caregivers are the unsung heroes.  We recognize that family support is critical to a veteran’s successful rehabilitation therefore, these families need training and support so they do not become overwhelmed with responsibilities in caring for these extraordinary veterans.  We believe our recommendation has equal applicability to families faced with extreme physical challenges as well as those who are challenged by mental illness following wartime service.  To this end, VA should establish a specialized respite pilot program that includes a dual track initiative for severely disabled veterans and family members.  The goal would be to furnish training for family members in the skills necessary to facilitate optimal recovery, particularly for younger, severely injured or ill veterans.  Recognizing the tremendous disruption to their lives, the pilot program should focus on helping the veteran and other family members restart their lives (the true definition of “rehabilitation”) after surviving devastating injuries or life-changing illnesses.  The track for the veteran should focus on rehabilitation and coping skills while an integral part of this program should include family counseling and family peer groups so they can share solutions for the set of common problems they face. 

Today, VA's system for providing needed rest or respite care for an immediate family caregiver, generally is governed by local VA nursing home care unit (NHCU) and adult day health care (ADHC) policies.  We mention this program because we believe that respite care is a necessary mental health benefit for caregivers.  Understandably, these programs are targeted to older veterans with chronic illnesses, because the elderly veteran population has been a primary enrollee in VA health care. Nevertheless, many veterans who have survived horrific injuries in Iraq and Afghanistan, or bear the long-term mental scars of that combat experience, are still in the early parts of their lives.  Thus, VA's NHCU and ADHC programs usually do not include a rehabilitative component and therefore remain unattractive to many OIF/OEF veterans’ families.  These programs need to be adapted or supplemented with new approaches or model of care to become more acceptable and attractive to this latest generation of disabled war veterans and their families.  Caregivers have indicated that they must feel comfortable when they are leaving the veteran during the respite period and want to be assured their loved one is receiving quality care.  We note that one of the VA caregiver pilot programs mentioned above offers 24-hour in-home respite care to temporarily relieve caregivers up to 14 days a year.  This kind of service offered in the home—may be an optimal setting for many severely disabled veterans. 

We believe VA should establish a new national program to make periodic and age-appropriate respite services available to all severely injured or disabled veterans who need it.  This program should be designed to meet the needs of younger, severely injured or ill veterans, as contrasted with the generally older veteran population now served by VA programs.  Where appropriate VA services cannot be made available directly because of geographic barriers, VHA should develop contractual relations with appropriate, qualified private or other public facilities to provide respite services tailored to this population's needs.  We appreciate the new authority Congress provided for VA to furnish age-appropriate nursing home programs for younger veterans, in section 1707 of the National Defense Authorization Act for Fiscal Year 2008.  Nevertheless, we believe that family caregivers need more assurance that VA will also be available to help them actively care for, and will provide appropriate respite periods, as they take on this lifetime challenge of care-giving responsibility. 

Based on this testimony and given the nature of these issues, and the unique situation that confronts our newest generation of severely disabled war veterans, DAV believes Congress and the Administration need to address a number of observed deficits, at least those discussed above, to make a family caregiver's support role more manageable over the long term.  This is in the best interests of these families, whose absence as personal caregivers and attendants for these seriously disabled veterans would mean even higher costs to the government to assume total responsibility for their care, and would lower the quality of life for the very veterans for whom VA was established to care for. 

To summarize, we urge the Subcommittee to develop legislation or oversight that would accomplish the following goals:

• Provide a full range of psychological and social support services as a benefit to family caregivers of veterans with severe service-connected injuries or illnesses including relationship and marriage counseling, family counseling, and related assistance to the family coping with the inevitable stress and often discouragement attendant to caring for the severely disabled veteran.
• Appoint accountable advocates and case managers to each severely injured or ill veteran's family, empowered to assist with medical benefits and family support services, including vocational services, financial services, and child care services.
• Publish clear policies requiring every VA nursing home and Adult Day Health Care Program to provide appropriate facilities and programs for respite care for severely injured or ill veterans.  Facilities should be restructured to be age-appropriate, with strong rehabilitation goals suited to the needs of a younger veteran population, rather than expect younger veterans to blend with the older generation typically resident in VA NHCUs and ADHC programs.

As we have indicated in prior Independent Budgets and in testimony before this Subcommittee, we believe that VA must continue to adapt its services to the particular needs of this new generation of disabled veterans, and not simply require these veterans to accept what services are currently available.  Likewise, such services should also be improved and available for previous generations of veterans with similar disabilities.  In this matter of family assistance, VA will also need to make a cultural change from a system that focuses only on the needs of a veteran patient to one that embraces the challenges of family caregiving. 

Mr. Chairman, this concludes my testimony on behalf of DAV.  We hope you will consider our recommendations and develop legislation to deal with family caregiver issues for severely disabled veterans.  I will be pleased to address any questions you or other Members of the Subcommittee may wish to ask.