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Submission For The Record of Barbara Cohoon, Ph.D., R.N., Government Relations Deputy Director, National Military Family Association

Chairwoman Buerkle and Distinguished Members of this Subcommittee, the National Military Family Association would like to thank you for the opportunity to present testimony on “Implementation of Caregiver Assistance: Moving Forward.” The National Military Family Association will take the opportunity to discuss our concerns regarding the Department of Veterans Affairs’ Caregiver Implementation Plan and several issues of importance to family caregivers of the wounded, ill, and injured service members, veterans, their families, and caregivers in the following subject areas:

  1. VA Caregiver Implementation Plan
  2. Additional Caregiver Compensation
  3. Senior Oversight Committee

VA Caregiver Implementation Plan

While our Association is extremely appreciative of Members of Congress for the passage of this landmark legislation, we have some concerns regarding the Department of Veterans’ Affairs’ (VA’s) implementation plan. These concerns include the need for these important caregiver benefits to start earlier in the service member’s recovery process, retroactive stipend to the  implementation of the law on January 31, 2011, and the establishment of a Department of Defense (DoD) and VA seamless transition of a  caregiver benefit.

Illness

Illness was one condition that was intended to be included in the caregiver provision in Caregivers and Veterans Omnibus Health Services Act of 2010 Public Law 111-163. Congressman Michael Michaud (D-2nd/ME) introduced the Caregiver Assistance and Resource Enhancement Act (CARE Act, H.R. 3155). According to his press release on July 29, 2009, “[t]he bill would establish a caregiver program to help family and non-family members who provide care for disabled, ill, or injured veterans.” This bill passed the full House of Representatives. As the new caregiver program was launched, Secretary of Veterans Affairs Eric K. Shinseki commented on February 12, 2011, "They [caregivers] are critical partners with VA in the recovery and comfort of ill and injured Veterans. The law states, “[n]eed for supervision or protection based on symptoms or residuals of neurological or other impairment or injury.” The inclusion of the words “or other impairment” could include illness related conditions. However, illness was not included in the VA’s interpretation of the law. This creates the potential for DoD’s caregiver compensation benefit and the VA’s caregiver benefit to apply to different sets of service members and veterans. DoD’s includes illness and the VA’s would not. This could potentially create a disparity in benefits and a lack of a seamless transition regarding compensation. Maintaining financial compensation will be key in ensuring these families’ financial situations stay stable during transition from active duty to veteran status. The frequent mention of our Armed Forces members’ exposure to toxic chemicals from burn pits may have a long-lasting effect. Therefore, service connected illnesses need to be included as a qualifying condition. Our Association recommends that illness be included as an eligibility requirement by the VA.  

Starting Time of the Benefit

The time to acknowledge the caregiver’s important role and to implement the caregiver benefit is while the wounded, ill, and injured service member is still on active duty status. The self-selection process of a caregiver occurs during the early phase of the recovery process. All Service branches are holding onto their wounded, ill, and injured service members much longer than previous wars. Years may have passed before the caregiver and the wounded, ill, and injured service member reach eligibility and can benefit from the VA’s important programs and services. Therefore, we recommend that the designation of caregiver benefits be established while they are still upstream on active-duty beginning with the start of the Medical Evaluation Board (MEB) process, rather than wait until they have transitioned to veteran status.

Waiting until after the receipt of a medical separation date to start the caregiver benefit application process will prevent caregivers from being able to receive training and obtain benefits early enough in the recovery phase to make a difference in their quality of life and in the quality of care they provide. Service members often receive care in a military hospital and/or VA Polytrauma Center, recover at home, and then return to the hospital for follow-on care and subsequent surgeries. The VA’s training requirement will prevent eligible caregivers from receiving any advance training for in-home care until the service member is being medically discharged from the military. Our Association finds this troubling because a recent survey by the National Alliance for Caregiving, “Caregivers of Veterans—Serving on the Homefront,” found a top challenge faced by veteran caregivers was not knowing what to expect medically with the veteran’s condition and not knowing how to address Post Traumatic Stress Disorder (PTSD) or mental illness. Caregivers have frequently stated they did not know how to care for a service member or veteran when they were discharged from the hospital and went home during their recovery phase. This can cause increased stress on an already anxious caregiver. Our Association believes the sooner you provide caregivers with the skills they need to perform their duties, the sooner they will be able to provide a higher quality of care to the wounded, ill, and injured service member and veteran. The VA’s decision to wait until the service member is medically discharged from the military before beginning the training program will certainly prevent this valuable training opportunity from occurring at the appropriate time to make a difference in the quality of care of the wounded, ill, and injured service member.  

The delay in eligibility also impacts the ability to obtain time sensitive needed benefits, such as access to mental health counseling, health care benefits, and financial compensation. This especially impacts non-spouse caregivers who would greatly benefit from these services. A recent VA press release stated 17 percent of caregiver applicants were from mothers. According to the “Caregivers of Veterans—Serving on the Homefront” survey, one in four respondents were parents caring for Operation Enduring Freedom and Operation Iraqi Freedom veterans.

Our Association is hearing that caregivers are reaching the stage of burnout and many are deciding to walk away from their roles as caregivers. According to “Caregivers of Veterans—Serving on the Homefront” survey, there are widespread impacts on the caregiver’s health, such as increased levels of stress and anxiety (77 percent), and not sleeping (77 percent), and a decrease in the utilization of healthy behaviors, such as seeing their medical provider. The caregiver survey highlighted the increased stress our veteran caregivers are under compared to their National counterparts. The law and Congressional intent were to allow the VA to provide assistance through value-added benefits to the caregiver early enough in the process to make a difference and prevent the development of physical health, mental health, and/or financial problems. The longer the VA waits to begin benefits, the more opportunity there is for the caregiver’s quality of life to worsen and for the caregiver to reach the stage of burnout. Caregivers of our wounded, ill, and injured need these services sooner in the recovery process than later.

The interim final rule states, “we do not believe that Congress intended to authorize prolonged caregiver benefits for active duty servicemembers, particularly because they have authorized Department of Defense to provide similar benefits to active duty servicemembers.” Our Association would disagree with this statement. They are two separate benefits with significant differences. The DoD’s benefit does NOT include training, health care, counseling, or respite care, which are only included in the VA’s caregiver benefit. Reliance on the DoD program only further delays caregivers from receiving health care, counseling, respite, and training benefits as it was intended to have been received.  Also, DoD’s benefit only provides compensation in the form of a payment to the service member who meets certain eligibility criteria and has a caregiver. The benefit is geared more towards the VA’s aid and attendance benefit in regards to establishing the level of compensation received by the service member rather than the VA’s new caregiver benefit. It would be better if these two benefits married up with a seamless transition of the aid and attendance benefit. The DoD benefit should not be considered a “caregiver benefit.”

Starting all Programs at the Same Time

The VA has decided to begin all of the benefits at the same time. They could very easily make training information and access to valuable VA and DoD resources available much earlier in the process than their proposed timeline. Again, the earlier access to pertinent resources and information related to VA and DoD benefits for the service member, veteran, and caregivers, will only be a win-win for everyone involved. Allowing early access to information validates the important role caregivers provide. Plus, an educated caregiver will only provide better care in the long run. Our Association recommends the VA begin caregiver benefits as early as possible while the service member is still on active duty status and not wait until they have received a final determination.

Stipend

Our Association, along with other Veteran and Military Service Organizations, frequently state how important this piece of legislation is for our Nation’s caregivers. Every day the VA delays its implementation only places additional stress on an already strained population. We really cannot afford to put this off even one more day. The least the VA could do in order to compensate for its delay is to provide retroactive stipend payments to caregivers from the original date of implementation required by law.

Our Association appreciates the VA acknowledging the need to compensate caregivers for providing direct hands-on medical care. However, we notice that the VA did not include a provision to pay caregivers for performing non-medical care services. Our Association has always proposed that financial compensation should recognize the types of medical and non-medical care services provided by the caregiver. The law states “the amount of the monthly personal caregiver stipend provided under subparagraph (A)(ii)(V)  shall be determined in accordance with a schedule established by the Secretary that specifies stipends based upon the amount and degree of personal care services provided.” The law allows the Secretary of the VA the flexibility to include non-medical care services to be captured. The law also states “stipends,” not stipend, can be provided. 

The reason for wanting to include a non-medical compensation benefit is because there are many hours in a day spent performing these activities that play an integral part in maintaining the service member and veteran’s quality of life yet are not captured by the VA’s U.S. Department of Labor’s Bureau of Labor Statistics (BLS) stipend matrix. Plus, Section 1115 of title 38 of the United States Code provides compensation to the veteran only when the spouse cannot perform the duties of a caregiver. This same level of stipend should be applied to non-medical care services provided by caregivers to service members and veterans. 

CHAMPVA

Our Association is pleased caregivers will have the opportunity to benefit from the Civilian Health and Medical Program of the Department of Veterans Affairs, known as CHAMPVA. The population most likely to use this benefit will be the veteran’s parent. However, there may be spouses who will qualify for this benefit. If the Veterans  were medically separated and were not medically retired, their spouses and children do not qualify for TRICARE (Department of Defense’s health care benefit) following separation from the Service. Under this circumstance, veteran spouses and their children qualify for CHAMPVA once the veteran obtains a 100 percent disability rating from the VA.  The veteran spouse, who qualified under the “Caregiver” benefit, should retain CHAMPVA coverage following revocation of the caregiver benefit because the veteran had received a 100 percent disability rating by the VA. We want to ensure spouses of 100 percent disabled veterans, no matter how they initially qualified for the CHAMPVA health care benefit, retain this benefit.

CHAMPVA coverage should be a retroactive benefit. Caregivers that are currently submitting applications should be told to keep all of their health care receipts from the time the caregiver law should have been implemented, January 31, 2011. The eligible caregiver would submit their receipts once they meet the VA caregiver requirement. The VA should then provide CHAMPVA coverage for eligible caregivers back to this date. Future caregivers should be told to keep all of their health care receipts from the time the application was submitted. The VA should then cover all future eligible caregivers for CHAMPVA back to when the application process was submitted. They should be encouraged to seek care from CHAMPVA providers in the interim period. The Department of Defense did this exact same procedure for the new TRICARE Young Adult benefit. Eligible young adults were told to keep all of their medical receipts and submit them once the law was implemented.   

Mental Health Services

The interim final rule states, “[t]he counseling provided to Family Caregivers is intended to treat those Family Caregivers, independent of whether that treatment is likely to support the clinical objectives of the eligible veteran’s treatment plan.” The interim final rule further states the VA will provide these same mental health services to Secondary Family Caregivers as well as Primary Family Caregivers. The interim final rule discusses this information under the “Supplementary Information” section. However, when the counseling benefit is discussed in §71.40 Caregiver benefits, it states all counseling services are described under §71.50. This section states “VA will provide … in connection with the treatment of a disability for which the veteran is receiving treatment through VA.” It appears to contradict what was stated earlier. Our Association would like to make sure that this is clearly stated in both Sections that Primary and Secondary Family Caregivers will receive counseling services independent of whether that treatment is likely to support the clinical objective of the eligible veteran’s treatment plan as intended by the VA’s interim final rule. 

Aggravated While in the Line of Duty

According to the interim final rule, the words “incurred or aggravated a serious injury” must have occurred while in the line of duty. It is unclear if a veteran’s caregiver would qualify for this benefit if the injury, obtained while on active duty but was now aggravated to the point of needing caregiver assistance, occurred on veteran status. An example would be a veteran who has an embedded piece of IED shrapnel in the brain that began to leak toxins or needed to be surgically removed resulting in a worsening medical condition and the requirement of a caregiver. The veteran would still benefit from other VA programs, such as aid and attendance, but his/her caregiver could no longer qualify for this important benefit. Our Association would like to ensure caregivers are still eligible for the VA’s caregiver benefit even if the serious injury was aggravated after the service member became a veteran. 

Report on Expansion of Family Caregiver Assistance

Our Association is concerned that the VA did not reference a report on the feasibility and advisability of expanding the caregiver benefit to family caregivers of veterans who have a serious injury incurred or aggravated in the line of duty while on active duty before September 11, 2001.  We want to make sure the VA fulfills this reporting responsibility because it is an integral part of the implementation of the caregiver program.      

Additional Compensation for the Caregiver

Our Association is appreciative of the generous benefits included in the Caregivers and Veterans Omnibus Health Service Act of 2010. However, there were some areas not addressed. Our Association would like to take the opportunity to present recommendations.

A report by the Center for Naval Analysis determined 85 percent of caregivers left employment or took a leave of absence from work or school while performing their caregiver duties. They found that the average loss of earnings per caregiver was approximately $3,200 per month. The financial strain placed on the family of our wounded, ill, and injured service member and veteran by the caregiver leaving outside employment has a trickle down affect. Caregivers who have been saving for retirement now find they are ineligible for their employers’ 401(k)s. We believe a mechanism should be established to assist caregivers to save for their retirements, for example, through the federal Thrift Savings Plan.

Once the recovery process is finished and the veteran’s care has stabilized, the caregiver may decide to work outside the home in order to help make financial ends meet. These caregivers may need the ability to learn new skills in order to compete in today’s workforce. We recommend VA offer these caregivers the opportunity to participate in VA’s vocational rehabilitation programs and help retool the caregiver’s resume. We must also find innovative ways to encourage civilian and government employers to hire these caregivers, especially when the veteran is unable to work.

According to the Center of Naval Analysis, wounded, ill, and injured service members and veterans, their families, and caregivers are assisted by many non-governmental organizations (NGOs) and charities. This assistance is important with the overall financial stability of these families during the recovery phase. Our Association’s concern, as we continue into another year of economic downturn, is that we may find many of these NGOs and charities no longer able to assist in the manner they have previously. We believe the availability of outside assistance by others will need to be monitored closely by both the VA and DoD to make sure these families are still being helped. If they are no longer being assisted, we believe the VA and DoD may need to begin providing assistance in those areas previously covered by NGOs and charities.

Relocation Allowance for Caregivers

Active duty service members and their spouses qualify through the DoD for military orders to move their household goods (known as a Permanent Change of Station (PCS)) when they leave the military service. Medically retired service members are given a final PCS move. Medically retired married service members are allowed to move their family; however, medically retired single service members only qualify for moving their own personal goods. 

The National Military Family Association suggests the VA should pay for the caregivers move as part of the VA caregiver law. We recommend that impending medically retired single service members who are eligible for the VA’s caregiver benefit be allowed the opportunity to have their caregiver’s household goods moved, too. This should be allowed for the eligible primary caregiver and their family. The reason for the move is to allow the impending medically retired single service member the opportunity to relocate with their caregiver to an area offering the best medical care, rather than the current option that only allows for the impending medically retired single service member to move their belongings to where the caregiver currently resides. The current option may not be ideal because the area in which the caregiver lives may not have all the health care services required for treating and caring for the impending medically retired service member. Instead of trying to create the services in the area, a better solution may be to allow the impending medically retired service member, their caregiver, and the caregiver’s family to relocate to an area where services already exist, such as a VA Polytrauma Center.

The decision on where to relocate for optimum care should be made with the help of the VA caregiver team: Federal Recovery Coordinator (case manager); the service member’s physician; the service member, and the caregiver. All aspects of care for the impending medically retired service member and their caregiver shall be considered. These include a holistic examination of the impending medically retired service member, the caregiver, and the caregiver’s family for, but not limited to, their needs and opportunities for health care, employment, transportation, and education. The priority for the relocation should be where the best quality of services is readily available for the impending medically retired service member and eligible for the VA’s caregiver benefit along with his/her caregiver.

Veteran Housing

Many of our wounded, ill, and injured service members and veterans from this current conflict are being cared for by their parents. Also, many adult children of our senior veterans are experiencing first-hand the challenge of trying to juggle the needs of the parents along with the needs of their children, and are referred to as the “sandwich” generation. Parent caregivers worry about who will care for their wounded son or daughter as they age and are unable to fulfill the role of caregiver. Caregivers may reach burnout and will need alternative solutions for providing care. The VA needs to be cognizant of the ever changing landscape and needs of their veteran population and those who care for them. The VA needs to offer alternative housing arrangements, such as assisted living facilities and family/retirement villages, which allow a diversified population to live together in harmony. This will go a long way in allowing for family units to stay together, foster independent living, and maintain dignity for the veteran.

Brooke Army Medical Center (BAMC) has recognized a need to support our wounded, ill, and injured families by expanding the number of guesthouses co-located within the hospital grounds and providing a family reintegration program for their Warrior Transition Unit. The on-base school system is also sensitive to issues surrounding these children. A warm, welcoming family support center located in guest housing serves as a sanctuary for family members. VA medical facilities could benefit from looking at successful programs like BAMC’s that embrace the family unit and commit to building family friendly environments of care for our wounded, ill, and injured service members, veterans, and their families. We recommend the development of alternative housing and living arrangements for veterans, their families, and those who care for them.

Mental Health

The need for mental health services will remain high for some time even after military operations scale down and service members and their families transition to veteran status. Veterans’ families and caregiver requirements for a full spectrum of mental health services — from preventative care and stress reduction techniques, to individual or family counseling, to medical mental health services—will continue to grow. It is also important to note if DoD has not been effective in the prevention and treatment of mental health issues, the residual will spill over into the VA health care system. The VA must be ready. They must partner with DoD and State agencies in order to address mental health issues early on in the process and provide transitional mental health programs. They must maintain robust rehabilitation and reintegration programs for veterans, their families, and caregivers that will require VA’s attention over the long-term.

The National Military Family Association is especially concerned with the scarcity of services available to the veterans’ families and caregivers as they leave the military following the end of their activation or enlistment. Military families will no longer qualify for many of the Services’ family support programs and DoD’s Military OneSource. Our Association recommends the VA increase outreach to veterans, their families and caregivers, and the communities they live in about available mental health resources to help them deal with the residual effects of long frequent deployments.

Children of the Veteran and Caregiver

The impact of the wounded, ill, and injured veteran on their children is often overlooked and underestimated. These children experience a metaphorical death of the parent they once knew and must make many adjustments as their parent recovers. Many families relocate to be near the treating Military Treatment Facility (MTF) or the VA Polytrauma Center in order to make the rehabilitation process more successful. As the spouse focuses on the rehabilitation and recovery, older children take on new roles. They may become the caregivers for other siblings, as well as for the wounded parent. Many spouses send their children to stay with neighbors or extended family members, as they tend to their wounded, ill, and injured spouse. Children get shuffled from place to place until they can be reunited with their parents. Once reunited, they must adapt to the parent’s new injury and living with the “new normal.” We must remember the caregiver may not be the veteran’s spouse. They may be the wounded veteran’s parent, sibling, or friend. These children are also affected and Congress and the VA must be cognizant of their potential psychological needs as well.

We encourage partnerships between government agencies, VA, DoD, and State agencies and recommend they reach out to those private and non-governmental organizations who are experts on children and adolescents. They could identify and incorporate best practices in the prevention and treatment of mental health issues affecting these children. We must remember to focus on preventative care upstream, while still in the active duty phase, in order to have a solid family unit as they head into the veteran phase of their lives. VA, DoD, State, and our local communities must become more involved in establishing and providing supportive services for our nation’s children.

Expansion of Caregiver Pilot Programs

The VA currently has eight caregiver assistance pilot programs to expand and improve health care education and provide needed training and resources for caregivers who assist disabled and aging veterans in their homes. These pilot programs are important; however, there is a strong need for 24-hour in-home respite care, 24-hour supervision, emotional support for caregivers living in rural areas, and coping skills to manage both the veteran’s and caregiver’s stress. We are appreciative that P.L. 111-163 will provide for increased respite care hours, along with counseling and mental health services for caregivers, but neither addresses the 24-hour supervision. We recommend if these pilot programs are found successful, they should be implemented by the VA as soon as possible and fully funded by Congress. Another program not addressed is the need for adequate child care. The caregiver may have non-school aged children of their own or the wounded, ill, and injured veteran may be a single parent. The availability of child care is needed in order to attend their medical appointments, especially mental health appointments. Our Association encourages the VA to create a drop-in child care program for medical appointments on their premises or partner with other organizations to provide this valuable service.

Senior Oversight Committee

The National Military Family Association is appreciative of the provision in the National Defense Authorization Act for Fiscal Year 2009 (NDAA FY09) continuing the DoD and VA Senior Oversight Committee (SOC) until December 2010. The DoD established the Office of Wounded Warrior Care and Transition Policy to take over the SOC responsibilities. The office has seen frequent leadership and staff changes and a narrowing of their mission. We urge Congress to put a mechanism in place to continue to monitor this Office for its responsibilities in maintaining VA and DoD’s partnership and making sure joint initiatives create a seamless transition of services and benefits for wounded, ill, and injured service members, veterans, their families, and caregivers. 

Recommendations

  • Broaden eligibility criteria to meet Congressional intent;
  • Establish a DoD and VA seamless transitional caregiver benefit;
  • Provide retroactive stipend payments to the original date of implementation required by law;
  • Begin caregiver benefits as early as possible while the service member is still on active duty status and not wait until  they have received a final determination;
  • Coordinate and collaborate health care and behavioral health care services between the VA, DoD, and State and governmental agencies in sharing of resources;
  • Approve relocation allowances and provide alternative housing and living arrangements;
  • Increase outreach to veterans, their families, and the communities they live in about available benefits;
  • Provide opportunities for the entire family to reconnect and bond as a family again;
  • Provide a holistic approach to care that incorporates the impact of the wound, illness, or injury on the family unit;
  • Expand all of the VA’s caregiver pilot programs; and
  • Continue oversight of the SOC/Office of Wounded Warrior Care and Transition Policy by Members of Congress.

The National Military Family Association would like to thank you again for the opportunity to provide testimony on the VA’s caregiver implementation plan for P.L. 111-163. Military families support the Nation’s military missions. The least their country can do is make sure service members, veterans, their families, and caregivers have consistent access to high quality health and behavioral care. Wounded service members and veterans have wounded families. The system should provide coordination of care, and VA and DoD need to work together to create a seamless transition. We ask this Subcommittee to assist in meeting that responsibility. We look forward to working with you to improve the quality of life for service members, veterans, their families and caregivers, and survivors.