VA Testimony of Madhulika Agarwal, M.D., MPH before Congress on June 4, 2009

United States Department of Veterans Affairs

STATEMENT OF
MADHULIKA AGARWAL, M.D., MPH
CHIEF OFFICER, PATIENT CARE SERVICES
VETERANS HEALTH ADMINISTRATION
DEPARTMENT OF VETERANS AFFAIRS
BEFORE THE
SUBCOMMITTEE ON HEALTH
COMMITTEE ON VETERANS' AFFAIRS
HOUSE OF REPRESENTATIVES

June 4, 2009

Mr. Chairman and members of the Subcommittee, thank you for providing me this opportunity to discuss the Department of Veterans Affairs’ (VA’s) programs and support of family caregivers. I am accompanied today by Dr. Lucille Beck, Chief Consultant for Rehabilitation Services, Veterans Health Administration (VHA), Dr. Tom Edes, Director of Home and Community-Based Care, Office of Geriatrics and Extended Care, VHA and Thomas J. Kniffen, Chief, Regulations Staff, Compensation and Pension Service Veterans Benefits Administration. Caregivers deliver essential services to seriously injured Veterans and service members and VA continues to support these compassionate providers as they help our wounded, ill and injured heroes regain and maintain health. VA shares Congress’ interest in providing the necessary support to caregivers, particularly when family members of Veterans assume that role to tend to a loved one. We are very enthusiastic about working with Congressional members and staff to strengthen VA’s already robust programs.

My testimony will describe how VA supports caregivers, including discussions about VA’s current programs and the population needing caregiver services, VA’s eight ongoing caregiver pilot programs, definitions of eligible caregivers, information on caregiver training, travel benefits and compensation for caregivers, and medical care and counseling for caregivers. I will then discuss another important element of VA’s caregiver programs: our respite care services. While VA is currently undertaking a comprehensive reassessment of caregiver programs, this statement will elaborate on our current approaches and raise principles for possible improvements. We look forward to working with Congress to identify the most feasible and effective caregiver program improvements.

Caregivers: Current Programs and Populations

VA currently contracts for caregiver services with more than 4,000 home health and similar public and private agencies approved by the Centers for Medicare and Medicaid Services (CMS) or through state licensure. The contractor trains and pays the caregiver directly, affording them liability protection while overseeing the quality of the Veteran’s care. VA provides remuneration pursuant to agreements with the home health agencies, thus in some cases compensating family caregivers indirectly. Importantly, VA also ensures that these home health agencies meet and maintain training and certification requirements specific to caregivers. This model has several advantages. First, it does not divert VA clinical resources from the treatment of Veterans. Second, it allows direct interaction between the Veteran and the Home Health Agency or State Area Agency on Aging regarding caregiver arrangements and satisfaction. Third, these agencies have expertise in training and certifying home health aides, including family members, and many operate in rural communities.

VA knows these services are important to Veterans and families alike. To determine the population affected, VHA conducted a survey of Veterans Integrated Service Networks (VISNs) and VA medical centers in April 2009 to determine how many family caregivers have been referred to home care agencies for training, certification, and employment as home health aides and as a paid caregiver for a Veteran. In Fiscal Year (FY) 2008, VA referred 233 family caregivers for training and certification in homemaker/home health aide services, which represents approximately five percent of all home care referrals. Twenty-nine percent of family caregivers were a Veteran’s spouse. In the first seven months of FY 2009, 168 family caregivers were referred to home care agencies for training and certification; of this group, 26 percent were spouses. At the time of the survey, the three VA medical centers participating in the Veteran Directed Home and Community-Based Services Program reported 70 family caregiver referrals (17 percent of who were spouses) through the first seven months of the fiscal year. VA favors the current system of eligibility for caregiver services that retains flexibility to allow us to provide benefits to Veterans who are unable to live independently, whether their specific condition is physiological, psychological or neurological in nature.

VA administers many different programs related to caregivers:

VA recently has begun contracting for home care services with local Area Agencies on Aging (AAA) through the Veteran Directed Home and Community-Based Services Program. We work in close partnership with the Administration on Aging to support and expand this program. Under this program, the AAA works with the Veteran to purchase caregiver services. The Veteran may choose a family member, friend or neighbor to deliver care, or may choose to have some care provided by a traditional agency. This program allows Veterans to remain in their community, and local VHA facilities cultivate relationships with the local AAA to pay for case management, financial and other support for Veterans. This program currently operates in 15 VA medical centers, and VA plans to expand to additional sites in the future.
Temporary Lodging for caregivers and family members is provided in Fisher Houses, VA-run hoptels, and non-VA lodging facilities, such as hotels or motels. Temporary lodging may be furnished when the Veteran travels to a VA health care facility for care or a Compensation & Pension examination. VA maintains this program directly and with support from Veterans Service Organizations, other volunteer agencies, and donations from the community. This benefit, provided at no cost to the family member or other person accompanying the Veteran who provides the equivalent of familial support, is provided on a first-come first-serve basis. As a condition of receiving temporary lodging, this benefit is limited to those who reside either 50 or more miles, or at least two hours from the VA health care facility. In 2008, the VA Fisher House Program served 5,949 families.
Additionally, although VA programs such as Aid and Attendance and Special Monthly Compensation do not provide payments to caregivers, these programs do provide direct payments to qualifying Veterans who require assistance with activities of daily living, reside in nursing homes, are bedridden, or are blind. Housebound benefits are also available to qualifying Veterans who are permanently disabled and substantially confined to their homes.
VA also provides a payment of up to $100,000 to Veterans who sustain certain injuries through the traumatic injury protection offered under the Servicemembers Group Life Insurance Traumatic Injury Protection Program (TSGLI). This helps enable Veterans’ loved ones, who may also provide caregiver support, to be with the Veteran during recovery.

Additionally, VA and the Department of Defense (DoD) have developed the Federal Recovery Coordination Program to help severely wounded, ill or injured recovering service members, Veterans, and their families access the care, services, and benefits provided through the various programs in VA, DoD, other federal agencies, states, and private sector. As of May 12, 2009, 257 Veterans and service members have enrolled in the program. VA has 14 Federal Recovery Coordinators (FRC) at six military treatment facilities and two VA Medical Centers. These individuals work virtually and manage clients across the U.S. If a family caregiver needs additional support because he or she provides full time care to the Veteran, the FRC ensures that the caregiver has information and access to resources and benefits that are available to them as they care for their loved one.

Eight Caregiver Pilot Programs

Before expansions are made in VA’s caregiver programs, it is prudent to evaluate the effectiveness and feasibility of the numerous pilot programs currently underway. VA is currently implementing eight caregiver pilot programs that are testing new methods of support. These programs are located across the country and benefit Veterans of all service eras and their caregivers. The goal of these pilot programs is to explore innovative options for providing education and support services to caregivers as they support and care for the Veteran. Among the key services provided to caregivers are respite care, case management and service coordination, assistance with personal care (bathing and grooming), extended days of respite care, social and emotional support, and home safety evaluations. Education programs teach caregivers how to obtain community resources such as legal assistance, financial support, housing assistance, home delivered meals, and spiritual support. These pilot programs began in 2007 and will end in September 2009. VA will be reviewing the outcomes of these caregiver pilot programs to determine the advisability and feasibility of nationwide implementation. These eight pilots are summarized below.

: Resources for Enhancing Alzheimer’s Caregiver Health (REACH VA) is currently piloted in 24 home-based primary care programs across the country in 15 states. This program is specifically for caregivers of Veterans diagnosed with dementia who are enrolled in home-based primary care. REACH VA provides an intervention translated from a similar, evidence-based National Institutes of Health initiative that provides education, support and skills building to help caregivers manage both patient behaviors and their own stress. In October 2008, REACH VA won the Rosalynn Carter Institute Leadership in Caregiving Award.
Gainesville, FL: Caregivers are taking part in a Transition Assistance Program, which provides skills training, education and supportive problem solving using videophone technology for new stroke patients or patients with stroke-related disabilities and their caregivers. The coordinating site is in Gainesville, while actual pilots are underway at the Stroke Centers of Excellence in Houston, TX and San Juan, PR.
Dayton/Cincinnati, OH: VISN 10 has established a 24/7 hotline titled, “Caregiver Advocates,” who are assigned to coordinate between VA and community providers in home-based primary care programs in Dayton and Cincinnati, OH. Caregiver Advocates assist caregivers in identifying, accessing, and coordinating existing and augmented caregiver resources and providing therapeutic interventions to the caregiver. This pilot also provides additional hours for adult day health care, in-home respite and inpatient respite. This program is designed for caregivers of frail imperiled Veterans at high risk for institutionalization.
Long Beach, CA: This pilot works with a community coalition to provide interventions that support caregivers for Veterans with TBI, post-traumatic stress disorder (PTSD) and dementia across the state of California using telehealth, web, telephone and video tele-conferencing. Participation in this program is currently limited to Veterans with TBI, PTSD, or dementia. Interventions are provided by the VA Cares Caregiver Center, California Caregiver Resource Centers, the “Powerful Tools” Caregiver Training program, and Stanford University’s internet-based Caregiver Self Management Program.
Albany, NY: This pilot converted a three-hour workshop developed by the National Family Caregivers Association, “Communicating Effectively with Health Care Professionals” into a DVD and manual. Face-to-face workshops have been implemented to offer an additional delivery method. If this program proves effective, VA may be able to add this content to the My HealtheVet website to promote further distribution.
Atlanta, GA: This pilot uses a model telehealth program adapting “Health Buddy” devices, which are existing technologies used by VA, to provide help and emotional support for caregivers living in remote areas or who cannot leave the Veteran by himself or herself. This program is designed for caregivers of Veterans who are 60 years old or older and who have at least one chronic illness that requires assistance with an activity of daily living or an instrumental activity of daily living. To participate, the caregiver must live with the Veteran.
Miami-Tampa, FL: Tampa’s existing respite program is being expanded to provide 24-hour in-home respite care for temporary relief to caregivers (up to 14 days per calendar year) and emergency respite in local assisted living/medical foster care facilities. The Miami program provides and coordinates comprehensive community-based services, including respite, home companions, adult day care, and use of an emergency response system for high risk Veterans.
VA Pacific Islands Health Care System: The Medical Foster Home concept is utilized to provide overnight respite for Veterans in areas where no other inpatient respite options are available, particularly in remote and rural service areas. Currently, overnight respite can only be provided at the VA Pacific Islands Health Care System Center for Aging in Honolulu or in contract nursing homes located on Oahu.

Defining Caregivers

Family structures are changing in all facets of society, and VA is sensitive to the fact that a specific list or a strict definition of family members may not be appropriate for many Veterans. Discretion is needed to ensure that Veterans retain autonomy in designating caregivers who are competent and in whom they are confident. As previously described, spouses often assume caregiver roles, but so do parents, grandparents, siblings, children and others. Many Veterans are able to remain independent in the community because neighbors, friends, and others provide assistance. VA would like to work with the Committee to help form any proposals to ensure adequate arrangements are made to accommodate each Veteran in need of caregiver assistance without creating undue administrative burdens on the system. We believe the definition of caregiver should be broadly defined to encompass a variety of potential caregivers, thus eliminating the need for a discrete list that may inadvertently exclude a candidate (such as a friend, neighbor, or significant other) that meets the Veteran’s needs and preferences. Leaving discretion to the Secretary to approve any potential caregiver would ensure this adaptability.

Caregiver Training

Training is essential for safe and effective caregiver assistance. Training should be designed to provide caregivers with the skills necessary to competently perform necessary personal care services. These needs may vary from patient to patient and VA’s caregiver policy must maintain this flexibility to preserve patient care. Under our contracting agreements, home health agencies are required to train and certify family members according to the state’s guidelines. Currently, VA works with family members or other attendants before they leave a VA facility and educates them about any issues related to the care of the Veteran’s condition. Many of our seriously injured Veterans who would need a caregiver have received treatment in VA’s Polytrauma System of Care. Prior to discharge from a Polytrauma Rehabilitation Center, family members may be scheduled to stay with the Veteran in a family training apartment. This allows the family member to experience what the return home will be like for their loved one, while still having rehabilitation staff and nursing staff available to answer questions, address unexpected problems, and provide the emotional support a family may need as they prepare for the next phase of rehabilitation.

Travel Benefits

An area that some families, caregivers and Veterans have requested additional support is travel reimbursement. Veterans who need caregivers often require assistance when traveling to a VA facility for scheduled care, especially if the Veteran lives in a remote or rural area. VA currently provides travel benefits to attendants of severely injured Veterans who are likely to be most in need of assistance. We appreciate the financial difficulties that families can face when a Veteran is unable to live independently and requires caregiver services. Some family members have had to leave their jobs to care for a loved one, creating further financial strains. VA is currently evaluating the assistance provided to caregivers.

Medical Care and Counseling for Caregivers

VA is authorized to provide medical care to caregivers on a humanitarian basis in an emergency situation. By law, VA is required to seek reimbursement for hospital care and medical services provided to individuals who are not otherwise eligible for these benefits. This can impose a significant hardship on some caregivers if they have no health insurance or coverage. VA is evaluating the humanitarian care assistance provided to caregivers.

A related issue involves the provision of counseling and mental health services for caregivers. In 2008, Congress expanded VA’s authority to provide mental health care and counseling to the members of the immediate family, the legal guardian of a Veteran, and the individual in whose household such Veteran certifies an intention to live. This care may only be provided as necessary in connection with the treatment of the Veteran. The contracting home health agency often has support systems available. A number of caregiver and family support groups also meet with family members at VA facilities to address caregiver burnout or depression. In so doing, they help address the individual counseling needs of family members that fall beyond VA’s existing caregiver authority. VA Vet Centers are also available to provide marital and family counseling as it relates to conditions connected with the Veteran’s readjustment to civilian life. Respite care, which I will now address, is also available.

Respite Care Programs

Respite care is an essential complement to caregiver benefits; it temporarily relieves the spouse or other caregiver from the burden of daily care for a chronically ill or disabled Veteran living at home. VA offers a comprehensive respite care program, providing respite in a variety of settings including nursing homes, adult day health care facilities and in the home. To be eligible for respite, a Veteran must be enrolled in VA’s health care system, have a chronic condition requiring daily assistance, and have a caregiver who needs respite to maintain the Veteran safely at home. Respite care services are planned in advance to best align caregiver schedule preference with availability of respite in the setting that will meet the Veteran’s care needs.

Adult day health care is available for use in providing respite services as well as for caregiver support and education, such as instruction on managing challenging behaviors in Alzheimer’s patients. To qualify for adult day health care, a Veteran must be enrolled and otherwise require nursing home care. Adult day health care is currently provided at 21 VA medical centers by VA staff and at 120 VA medical centers through contracts with community providers.

In many areas, there are simply no providers with whom VA can contract for home respite. VA has two pilot programs underway to expand home respite services. VA Voluntary Services (VAVS) is establishing and operating a community-based home respite program to benefit Veterans and their primary caregivers. Any Veteran eligible for respite care can participate in this program, which is being implemented at 12 VA medical centers. This program is volunteer-oriented and provides full-time caregivers a needed break. VA recently added a “buddy” component that matches Veteran volunteers with OEF/OIF Veterans, creating a relationship, bond and support system to expand services outside the home environment. Volunteers are trained using materials provided by the Senior Companion Program. More than 60 Service Organizations have been briefed about the program, and VA is soliciting potential volunteers. Volunteer availability is the only limitation on the potential for this program. The second pilot is a caregiver assistance program that is underway at two VA medical centers to provide 24-hour in-home respite care.

VA recently adopted an innovative program to aid Veterans and their families with an option for long-term care. The medical foster home program identifies persons in the community who are willing to open their homes and care for Veterans who need daily assistance and are no longer able to remain safely in their own home, but do not want to move into a nursing home. VA calls this program, “Support at Home – Where Heroes Meet Angels.”

Both Volunteer Home Respite and Medical Foster Home work out very well for the family, the Veteran, and the community, particularly in rural areas. Concerned citizens often express an interest in helping Veterans, but they live too far away from a VA facility to participate easily. These programs offer them a chance to serve Veterans in their city or town by either visiting the home of the Veteran or opening their own home to the Veteran. VA trains all individuals who participate.

VA provides caregiver support services for the families of Veterans receiving VA home-based primary care and hospice care. Veterans receiving home-based primary care typically have chronic, disabling diseases, and the burden of care often falls on the Veteran’s family. Home-based primary care provides home care to over 19,000 of our most frail Veterans every day, and provides caregiver education and training on the care needs of the Veteran VA recently adopted a new quality indicator, which helps us determine the level of strain and fatigue on our family caregivers. By the end of 2008, VA assessed the caregivers of 73 percent of these Veterans in Home Based Primary Care, and offered guidance or support to 93 percent of those identified with caregiver strain. Home Based Primary Care currently operates at 132 VA Medical Centers, and 22 of these are in designated rural settings. To further expand the reach of this program to serve rural Veterans, we awarded funds in May 2009 to start Home Based Primary Care satellites in 25 rural community-based outpatient clinics and 14 Indian Health Service facilities with funding support from VA’s Office of Rural Health.

Caregiver Programs for the Future

While VA’s caregiver programs address an immediate need, we recognize some Veterans, particularly young Veterans, will need care for the rest of their lives. VA is building the systemic infrastructure now that will support them and other Veterans into the future while allowing us to adapt to their changing needs. While we do not yet know what new advances await us in health care, VA remains committed to leading the medical community and establishing the benchmark by which all caregiver programs will be measured, as we have with our electronic health record and mental health services.

VA sees an ideal caregiver program as one that leaves broad discretion to the Veteran and the Department concerning who can be named a caregiver. Similarly, caregiver services would not be limited by the whether the Veteran’s condition is physiological, psychological, neurological or other. It most often would involve an intermediary responsible for supervising and ensuring accountability of care between the Veteran and that caregiver to prevent conflicts of interests or strained relations between the Veteran and their health care provider based upon difficulties or issues between the Veteran and their caregiver. While caregiving is an essential complement of health care management, caregivers are selected because of the preexisting relationship and trust they have with Veterans. Health care providers maintain their relationships on a professional level and develop trust through compassion and experience. By retaining an intermediary, VA preserves both relationships and forestalls any choice a Veteran may feel compelled to make between his or her caregiver and health care provider.

Training and qualification for certification of caregivers should remain the responsibility of others, such as home health care agencies, which already have the expertise and knowledge on how best to prepare caregivers for their duties.

VA’s array of caregiver programs would remain in effect to meet the individualized needs of Veterans and to preserve their independence for as long as is safe and possible. Elderly Veterans require different support mechanisms than Veterans with quadriplegia or a similar condition, and these Veterans have different needs than those with TBI; maintaining programs tailored for different populations ensures VA offers optimal care to all Veterans. These offerings must continue to be coordinated across the Department, principally with the Veterans Benefits Administration and its Aid and Attendance or Housebound benefits. VA envisions a model of a three-tiered system that will strengthen and support Veterans across their lifetime. At the broadest tier of this system, home-based support programs are currently provided to allow Veterans to retain as much independence as possible. Second, those requiring additional support and supervision can find these services in an assisted living, medical foster home, or community residential care environment. In providing these services, VA can assist Veterans in finding an appropriate residence and provide oversight, but it lacks the authority to pay for or provide this service. Finally, VA also will continue to offer community living centers and community nursing homes to those with even greater needs.

Conclusion

Mr. Chairman, caregivers fulfill a vital role in providing quality and necessary health care to Veterans with complex needs. Our current programs are striving to meet the needs of both caregivers and Veterans, and we will make every effort to enhance our programs and strengthen our collaborations with others, such as DoD or the Administration on Aging. This statement provides some general principles which VA believes an effective caregiver program must include. VHA representatives are available to discuss this matter further with you and your staff. Thank you again for the opportunity to testify. My colleagues and I are prepared to answer your questions.