Hearing Of The Health Subcommittee Of The House Veterans Affairs Committee - "Meeting The Needs Of Family Caregivers Of Veterans"

Statement

Chaired By: Michael Michaud

Witnesses Anna Frese, Caregiver, Wounded Warrior Project; Commander Rene A. Campos, USN, Deputy Director, Government Relations, Military Officers Association Of America, Barvara Cohoon, RN, PH.D., Government Relations Deputy Director, National Military Family Association; Jill Kagan, MPH Chair, ARCH National Respite Coalition; Suzanne G. Mintz, President And Co-Founder, National Family Caregivers Association; Mark S. Heaney, President And Chief Executive Officer, Addus Healthcare, And Hospice Care; Madhulika Agarwal, M.D., MPH, Chief Officer, Patient Care Services, Verterans Health Administration, Department Of Veterans Affairs; Lucille Beck Ph.D., Chief Consultant, Rehabilitation Services, Veterans Health Administration Department Of Veterans Affairs; Thomas e. Edes, MS, Director, Home And Community-Based Care, Office Of Geriatrics And Extended Care, Veterans Health Administration, Department Of Veterans Affairs, Thomas J. Kniffen; Chief, Regulations, Staff Compensation And Pension Service, Veterans Benefits Administration, Department Of Veteran Affairs; Edwin L. Walker, Acting Assistant Secretary For Aging, Administration On Aging, Department Of Health And Human Services; Niel Koch, Deputy Undersecretary Of Defense, Office Of Transition Policy And Care Coordination

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REP. MICHAUD: I'd ask the -- I'd like to call the Subcommittee on Health to order. And, as we begin our hearing, I'd ask the first panel to come forward. And as they're coming forward, I'd like to thank everyone for coming today.

The goal of today's hearing is to identify the gaps in support of services for family caregivers. We also seek a better understanding of the VA's current efforts to meet the needs of family caregivers of veterans.

Family caregivers are the true backbone of the U.S. long-term health care system, with more than 50 million people who provide informal caregiving for a chronically ill, disabled or aged family member or friend in any given year. Focusing on family caregivers of veterans, it is my understanding that the VA does not collect data on this population, and therefore, the numbers of family members who provide care for veterans is unknown.

Additionally, studies of the general family caregiver population show that the real adverse financial and physical toll that caregivers has had on any individual -- on these individuals. For example, women family caregivers are more than twice as likely to live in poverty. Also, family caregivers report have a chronic health condition as -- at twice the rate of non-caregivers' counterparts, and those who provide 36 or more hours of weekly caregiving are more likely to experience symptoms of depression and anxiety than non-caregivers.

In the end, this has serious implications for our veterans. In order to ensure that our country's hero receives the highest quality of care from their family caregivers, it is important that we arm them with the right tools and offer appropriate supportive services, so that they are less apt to be overwhelmed by the difficult day-to-day reality of being a caregiver.

Clearly, family caregivers of our veterans have made great sacrifices. I have heard from family members who gave up their jobs, delayed their schooling, and made significant life-changing sacrifice in order to be with their loved ones. This raises questions about the VA's current efforts to help these family caregivers and whether there are significant supportive services in place.

Additionally, there are concerns about the lack of coordination of caregiver benefits when the service members transition to veteran status. In other words, supportive services that family caregivers may have depended upon through the DOD are suddenly discontinued when the wounded warrior transitions to the VA system.

Through today's hearing, I look forward to exploring ways to better help the family caregivers of our veterans.

So I want to thank all the panelists in the different panels we have today for coming. I look forward to hearing your testimony.

And now I would recognize Mr. Brown for an opening statement that he may have.

REP. HENRY BROWN (R-SC): Thank you, Mr. Chairman.

Our men and women in uniform put their lives on the line to defend our freedom. And when they are wounded in the line of duty, it is often the family that puts their lives on hold to care for their injured loved ones.

Family caregivers are, more often than not, at the core of what sustains the treatment and recovery of the wounded, ill or injured soldier. Their commitment is strong and heartfelt. Yet it can be an enormous challenge, especially in a prolonged recovery.

There are many struggles that family members that may face when assuming this role, including job absences, lost income, travel and relocation costs, child care concerns, exhaustion, and emotional and psychological stress. The President's Commission on Care for America's Returning Wounded Warriors, often called -- they often call the Dole-Shalala Commission -- and reports by both the Department of Veterans' Affairs and the Department of Defense. The Inspector General's Office has emphasized the critical role that families play in the success rehabilitation of our wounded warriors. Among the many recommended reforms identified in these reports was the need to initiate policies that take family caregivers into account.

As a result of these reports and congressional direction, both VA and DOD have taken steps to implement policies to provide better support and assistance for the families and friends of wounded service members.

At this hearing today, we will take a close look at the role of the family caregiver and the services VA and DOD are currently providing. Most importantly, we will examine what more can and should be done to provide family caregivers with the information, education, assistance they so urgently need and deserve. It is vitally important to the health and well-being of our wounded warriors and their loved ones to support and preserve the critical roles of family caregivers.

I thank you, Mr. Chairman, for holding this hearing and yield back.

REP. MICHAUD: Thank you, Mr. Brown.

Other committee members have an opening statement? Hearing none, I'd introduce our first panel with Anna Frese, who's a caregiver of the Wounded Warriors Project; Rene Campos, who's the deputy director of government relations for the Military Officers Association of America; and Barbara Cohoon, who's the deputy director of government relations for the National Military Family Association.

I'd like to thank all three of you for coming here this morning. I look forward to your testimony. And we'll start with Ms. Frese.

MS. FRESE: Chairman Michaud, Ranking Member Brown and members of the subcommittee, thank you for inviting the Wounded Warrior Project to testify today about the needs of family caregivers of wounded warriors.

Let me begin by asking you respectfully to think for a minute about what it took for each of you to get prepared for the day today. I'm not talking about the first cup of coffee or your morning paper. I'm asking you to think about more basic activities -- raising your arm to reach for a bedside light switch, moving a finger to wipe the sleep from your eyes, getting out of bed, walking to the bathroom. While most of us take this for granted, severely injured service members, like my brother Eric, can no longer carry out these basic activities of daily living without assistance.

Eric and other severely wounded warriors get the most intimate, devoted care from family members in the privacy of their homes, 24 hours a day, seven days a week, 365 days a year. Ironically, Eric grew up as a very independent kid who was always wanting to go against the grain and challenge the norm. He's a huge outdoorsman. He'd say, "Anna, I want to be an explorer. I'm going to buy a horse and travel across the United States just like in the old days, meeting people and seeing new things."

Of, like any big sister, I had to laugh and tease at him, pointing out how shy and private he is, asking him how could he do that when he doesn't even like sitting next to strangers in the movie theater. But he had plans. Eric is not only my brother, but he's a husband to Stephanie, a petite and feisty young woman, and father to Gracie, a kind and lively little girl who has eyes as blue as the sky. Gracie is the light in Eric's eyes.

On hearing of his upcoming deployment to Iraq, Eric went out and bought his eight-month-old daughter a battery-powered pink Barbie Jeep big enough for a five-year-old, along with many other non-age- appropriate toys and gadgets. Stephanie questioned his judgment. But Eric explained that if anything were to happen to him, he wanted Gracie to know -- he wanted Gracie to continue to receive gifts from her dad, gifts to explore the outdoors, to have fun, and know how much fun he liked to have, but mostly to know that he was always thinking about his little girl.

I don't know if he foresaw the future or was just being realistic about the risks of war. But after an IED attack on October 2, 2005, Eric ended up fighting for his life. Eric won the battle. But today he lives with a traumatic and anoxic brain injury. He faces a new battle every day as he works to regain the ability to walk, talk, eat and drink. He requires full-time assistance from our father, Ed, who quit his job as a warehouse supervisor to assist his son in adapting to the new normal of life after injury and provide quality of life.

Nursing home care was the only option originally proposed for Eric's future. But our family couldn't bear the thought of Eric -- sending Eric to a nursing facility. So he came home.

Eric and Dad are a team now. Eric requires assistance with all activities of daily living. But having one's daily needs met doesn't capture the desired life of a 28-year-old man. Dad does help Eric with all of his physical needs. But it's the way that Dad cares for Eric's spirit, by supporting him in reaching his goals, creating new memories, and focusing on future dreams and adventures. That's been the driving force behind Eric's progress toward recovery, things that he would not find in a nursing home.

Eric relies on Dad to assist him with everything. And Dad does it with pride and great respect. But there is an unseen price. Our father, now 54 years old, is no longer employed, has used up his retirement funds and savings. He no longer has health insurance and has not contributed to Social Security in almost four years. Even though his future has drastically been altered, he often tells me, "Eric would do it for me."

Mr. Chairman, enactment of H.R. 2342, the Wounded Warrior Project Family Caregiver Act, would help ensure that these severely veterans, who need ongoing help, can get the loving care at home. And that care can be sustained. We are very grateful for you for having introduced this important bill and for holding this hearing.

The families of our severely wounded warriors must make life- altering changes as they dedicate themselves to caregiving. But while the decision to care for a loved one may come easily, informal family caregiving can take an extraordinary toll, emotionally, physically, spiritually and economically.

Few of these family caregivers receive training. They have no formal support network. Many have no access to health care, respite care, counseling or a way to replace income. These families face the common danger that, over time, their ability to care for their veteran may break down, whether due to utter exhaustion, incapacitating illness, personal bankruptcy, nervous breakdown or other circumstances. There may be no other alternative for the veteran than institutional care.

Over time, informal family caregiving for a severely impaired individual is inherently fragile. Certain fundamental supports are needed to sustain it. These are training, informal -- information and assistance to meet routine, specialized and emergency needs, access to counseling and mental health services, respite care, medical coverage and some modest level of economic support.

In our view, the VA has the capacity to provide for these needed services and support. But it has no systematic family caregiver program. Beyond a number of pilot programs, VA gives very little attention to family caregivers, even though they are vital to the veterans' life-long rehabilitation process. Some VA facilities provide some of the family services family members need; notably, respite and some education and counseling. But with only limited, piecemeal and inconsistent VA services, families are largely coping on their own.

MS. FRESE: When invited to comment on the caregiver program, like that proposed in H.R. 2342, VA withheld support and stated a preference for contracting with agencies. But contract-provided home care is a poor alternative. Where VA home health agencies are even available and willing to care for often complex needs of severely wounded warriors, their services are highly variable.

In our case, Eric was assigned a home health care nurse during his transition home, but the agency's involvement was more troublesome than helpful. We encountered problems with the agency staff arriving very late or not at all. We were troubled to find that the agency staff were simply not comfortable in meeting Eric's special needs.

This may not be surprising, given the fact that there's no nationwide training standard for home health care and no training to meet the unique needs of young severely wounded warriors, particularly those with TBI, PTSD or other psychological issues.

In short, contract home health care is not a satisfactory answer for most families. Additionally, for family caregivers who need financial support to enable them to care for their loved ones, VA's vague suggestion that family caregivers could seek employment with local home health agencies is just implausible.

Mr. Chairman, given the profound challenges that family caregivers face and the VA's failure to respond effectively to those challenges, we welcome the introduction of H.R. 2342 and look forward enthusiastically to working with you and the committee to advance this critically important initiative.

That concludes my testimony. I'd be happy to answer any questions you have.

REP. MICHAUD: Thank you very much, Ms. Frese.

Commander?

CMDR. CAMPOS: Thank you, Mr. Chairman, Representative Brown and members of the subcommittee, for the opportunity to present MOAA's views on these critical issues facing caregivers of wounded, ill or injured veterans.

MOAA very much appreciates the subcommittee's leadership and VA's and DOD's efforts at transforming health care and support systems.

Yes, much has been done, but let me share the perspective of one father whose son was injured in 2007. He states, "All the Army ever wanted was a soldier. The Army got it. All we want is a little help. We got excellent care at the military treatment facility, but we had to fight to get our son in private care and take him home. There are so many problems with the VA bureaucracy. We were lucky to know people in the system, but so many other families are struggling."

Unfortunately, these barriers are still very common in the VA and DOD systems, leaving families wondering if anything has really changed.

Three recent studies I highlighted in my statement offer some excellent insights to the needs of family caregivers. They desire a single, joint, one-stop VA-DOD seamless system of care and support that's focused not only on their medical, but also on non-medical needs, and less focused on the preferences of government bureaucracies.

They want reliable and timely communication and information that's personalized to their situation. And they need an advocate to assist with the coordination of care and services, someone to help them to navigate these complicated systems. They also need training, certification, compensation, and they desire reimbursement for all of their out-of-pocket expenses. We just heard and are aware that at the time of injury, there is an immediate economic impact on these families and caregivers.

MOAA believes strongly that these issues require major system fixes, not just patching the system with additional layers of programs and policies that further entrench the bureaucracy and build up barriers.

The following are recommendations to address system issues. First, we need authority to establish a permanent, single, joint, seamless transition or senior oversight committee office or permanent authority for the SOC, which currently expires in December. VA-DOD seamless transition is a long-term project that requires consistent, long-term oversight to change cultures.

Second, MOAA strongly supports the chairman's bill, H.R. 2342, that would establish a VA family caregiver certification, training and compensation program.

We would encourage Congress, VA and DOD, though, to also establish reciprocal programs and policies so that caregivers would be equally qualified and eligible to do both medical and non-medical benefits in either a DOD or a VA setting, because these wounded caregivers' families often are caught in the middle between these two systems, having to start over at each transition phase.

We believe, also, that compensation for care should be paid directly to the caregivers rather than providing it as a benefit to the service member or veteran. When the benefit is paid to the member, it often does not reach the non-spouse caregiver, either because the member is unfamiliar with the payment or the caregiver doesn't want to take money from the member. Thus, the payment fails to meet its intended purpose.

Finally, MOAA recommends establishing an advocacy and support system that includes a center of excellence for caregivers and families that provides oversight on medical and non-medical care and support programs and policies.

We also recommend a community resource coordinator program and national board or advisory committee. This is a caregiver advocacy concept proposed in a 2009 report by the Quality of Life Foundation, as outlined in my statement.

In closing, MOAA believes by building a system that's adaptable and focused on the needs of wounded and their families, then we will build the right system, one needed today and one built to anticipate the future.

Thank you. That concludes my remarks, and I look forward to your questions.

REP. MICHAUD: Thank you, Commander.

Doctor?

MS. COHOON: Chairman Michaud, Ranking Member Brown and distinguished members of the subcommittee, the National Military Family Association would like to thank you for the opportunity to present testimony on meeting the needs of family caregivers of veterans.

The National Military Family Association asserts that behind every wounded service member and veteran is a wounded family. Caregivers of service members and veterans injured defending our country experience many uncertainties. Family members, along with the caregiver, are an integral part of the health care team, and their presence has been shown to improve the service member and veteran's quality of life and aid in a speedy recovery.

Caregivers have a long road ahead of them. In order to perform their job well, they must be given the skills to be successful. This will require the VA to train them through a standardized certified program and appropriately compensate them for the care they provide.

We are pleased with the two caregiver legislative proposals by both chambers that will provide these services for caregivers. Both of these proposals place VA in an active role in recognizing caregivers' important contributions, enabling them to become better caregivers to their loved ones. It is a win-win for everyone involved.

However, the self-selection process of a caregiver occurs during the early phase of the recovery process. We recommend the designation and education of caregivers will need to be established while they are still upstream on active duty rather than wait until they have transitioned to veteran status.

Currently, there lacks a policy to compensate a caregiver for services provided to wounded, ill and injured veterans. A large percentage of caregivers leave work in order to provide full-time care.

Others may become ineligible for TRICARE following discharge and are ineligible for CHAMPVA until the veteran reaches 100 percent disability.

We propose that new types of financial compensation be established for caregivers that could begin while the hospitalized service member is still on active duty and continue throughout the transition to care under the VA. The compensation should recognize the types of medical and non-medical services provided by the caregiver.

The VA currently has eight caregiver assistance pilot programs. However, one program not addressed is the need for adequate child care. The caregiver may have non-school-aged children of their own or the veteran may be a single parent. The availability of child care is needed in order to attend medical appointments. Our association encourages the VA to create a drop-in child care program on their premises or partner with other organizations to provide this valuable service.

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.

It is also important to note if DOD has not been effective in prevention and treatment of mental health issues, the residual will spill over into the VA health care system. The VA must be ready.

We recommend that VA develop a holistic approach by including veterans' families and caregivers in providing mental health counseling, reintegration and respite care.

The impact on the veteran's children is often overlooked and underestimated.

These children experience a metaphorical death of the parent they once knew and must make many adjustments. We must remember the caregiver may not be the veteran's spouse. These children are also affected and we must recognize their psychological needs as well.

Our wounded, ill and injured service members, veterans and their families are assigned case managers. The goal is for a seamless transition of care between and within the two governmental agencies.

However, with so many case managers to choose from, families often wonder which one is the right case manager. We often hear from families who have not yet been assigned a federal recovery coordinator and are still alone trying to find the right combination of care, especially in the community.

We need to look at whether the multiple-layered case managers have streamlined the process or have only aggravated it.

We request the ability for medical retired single service members to be allowed the opportunity to have their caregiver's household goods moved as part of the medical retired single service member's permanent change of duty station, known as PCS move. This allows them the opportunity to relocate with their caregiver to an area offering the best medical care rather than to move where they caregiver currently resides.

Many of our veterans from this current conflict are being cared for by their parents. Parent caregivers worry about who will care for their wounded son or daughter, as was earlier talked about by Ann, as they age.

Caregivers may reach burnout and require 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 should offer alternative housing arrangements. This will go a long way in allowing for family units to stay together, foster independent living, and dignity for the veteran.

Our association would like to thank you again for the opportunity to present testimony today on veterans' caregiver issues and gaps in supportive services. We thank you for your support of veterans, their families, caregivers, and for the survivors of those who made the greatest sacrifice. We look forward to working with you to improve the quality of life for all of these families.

Thank you, and I await your questions.

REP. MICHAUD: Thank you very much for your testimony once again. I thank the other two panelists, as well, for their testimony.

My first question is -- we talk about financial compensation for family caregivers. So my question is, to all three, what do you think that compensation should be financially?

Commander?

CMDR. CAMPOS: I couldn't speak to a dollar value, but as I mentioned, and as Barbara talked about, this needs to be addressed at the very beginning, at the time of injury. And we have to recognize that I don't believe that one system will fit all, but these situations are going to change over time, the needs of families are going to change, and the service member and the veteran.

I look at trying to get DOD and VA to work closer together, then recognizing that these families are getting quite a bit of support and immediate care at the time of injury, and they're pretty much in a cocoon. So when they transition into the VA system, it needs to be easier for them and not have to try to guess all over again where to start and so on.

And that's why, in terms of compensation, we want to see DOD and VA work together to build a package that is -- because these folks will be going back into the DOD system and they'll be transitioning between the systems at several times throughout their longer-term care.

So I can't give you a dollar value or specifically, but we should make sure that it is a package that will meet the needs of the family of the wounded as they make -- as they transition over their life.

REP. MICHAUD: Doctor?

MS. COHOON: Our association has really proposed as far as two different types of payment, one as far as for the non-medical care, and also the other as far as actually medical care, which would be more of your hands-on.

And the reason for that is that we do find caregivers are really providing two different roles and depending upon the type of injury and, also, the cycle of the recovery or where they are in the recovery phase, come to terms as far as how much involvement that they're doing.

If someone has a severe or moderate TBI, but other than that is functional as far as being able to get around, then the caregiver's more involved in what you would call non-medical care. They're making the doctor's appointments. They're making sure they're getting to where they need to go. They actually may be looking on their BlackBerry and following like a GPS to make sure they made it to Walter Reed or to Bethesda or to wherever, and then making sure that they do go home.

So there's a lot of non-medical care that goes on. So we're looking more at that as far as to be kind of a range, but basically kind of an amount that's given each month.

And as far as the medical care, we're looking more of what that would be as far as hands-on, similar to nursing care that would be given, especially if someone had a spinal injury and basically from the waist down, needed certain types of care. You're turning them in the bed; you're actually physically giving them medication, those types of things.

And there are systems in place right now where that's actually then compensated hourly. So that's -- we're kind of looking at those two different pieces. But also, too, as far as the care that they're giving, as far as providing them, they also have lost a significant amount of money as far as walking away from their current job that they are. So there's two different financial impacts going on at the same time.

REP. MICHAUD: Thank you.

Ms. Frese?

MS. FRESE: It's a good question. Let me work with the number that we do know. The cost per day for in-house VA nursing home care for next year is projected to rise to $887.33 per day, making that an annual cost of $324,000.

And while I don't want to guesstimate the cost of what enacting the caregiver legislation would be, I can comfortably express with confidence that the failure to provide such support increases the risk that veterans would have to be institutionalized, and those costs are clearly far in excess of the relatively modest cost that caregivers' (incidents ?) would be.

REP. MICHAUD: Thank you. My next question -- I know some of you have answered this in your opening statement, but if all three of you could just address -- if we were to pass legislation, what are the -- would we put in the legislation, the three most important components of offering a caregiver program? What would the three most top priority parts be?

And I know you talked about some during your opening testimony, but not knowing what we'll be able to get through the House and through the Senate, if we had to pick three, what would the three top priorities be?

Ms. Frese?

MS. FRESE: As we spoke about earlier, each family, each circumstance, family dynamics of each family is so drastically different.

From what I hear from families and from our own experience, the health care, especially for the parents that are caring and those who are not a spouse and not covered under that health care, they need some form of health care to take care of their own health, so they can actually be around to continue to care for the veteran.

And also it comes back to the economic support as well; the time spent worrying about how they're going to continue living and paying for their needs. You spend more time focusing on the worrying than actually -- and you want to be able to focus your time, your strength, and your full ability on the veteran rather than worrying.

So the health care piece, the income, and the mental health to help sustain the long-term ability of the caregiver.

Thank you.

CMDR. CAMPOS: As I mentioned, we are concerned about adding more programs or adding more layers onto already complicated bureaucracies. We go back to the need for establishing some sort of permanent office or seamless transition agency of some kind. And again, if it's extending the current SOC out or whatever, we need some good solid oversight that doesn't change when the administration changes and when -- I mean, so we need the continuity of the leadership and oversight program. So I think that's critical to whatever we do.

The other thing we need to do is make sure that we have, again, a reciprocal program for caregivers. That includes both the medical and the non-medical aspects, because, again, these families that have been on active duty, have child care, they have a lot of other family support, non-medical support services that are there.

So they should have a package of things that they can expect and that would also help transition over into the VA system.

And then, finally, go back to at the time of injury, they really need an advocate. They need somebody that's going to be able to walk them through all these different things that are going to be happening to them over, in some cases, the course of their life. So we think that there needs to be an advocacy program of some kind that sets that up. I think the Quality of Life Foundation report I mentioned is a good starting point.

MS. COHOON: First of all, this needs to start upstream, as I mentioned before, while they're still active duty, if you're going to do anything as far as the caregiver.

One of the conversations we recently had with Secretary Shinseki is that if the caregiver's not taken care of upstream, by the time he gets them, and they're veteran status, they're either burned out or they're so frustrated with the system that they may stop being a caregiver. And then everyone loses, especially the family.

So this really needs to make sure -- we want to make sure that this actually starts upstream while the service member is still active duty.

The other piece is that we have to remember that the caregiver well-being is directly linked to the veterans' care well-being. So if the caregiver's taken care of, then we know that the veteran's being taken care of, and vice versa.

And so ways in which we can help the caregiver is that we need to make sure -- recognize that the role that they're playing is important. And then the pieces that they're providing also need to be recognized. And how we go about recognizing that can be done in lots of different ways. We've talked about the compensation as far as financial, but we also realize that they have walked away from a lot of other different things. They lose their health care. They lose their ability as far as to maintain a retirement or even lose their retirement. We also need to make sure that they have respite care, those types of pieces. So we need to make -- we're looking at the well-being of the caregiver as one of those packages that you talked about.

The other is the caregiver also needs to maintain a purpose in life, not only as far as taking care of the veteran, but also as far as them personally. And also remember the fact that what surrounds them is their family. It may not be mom or dad. It may be their sister or brother. Or if it's mom or dad that's doing that, they have other children that they're taking care of, or maybe a father that's there also taken care of. So the family unit itself is in a delicate balance. So whatever you provide the caregiver affects everybody else.

REP. MICHAUD: Thank you very much.

Mr. Brown.

REP. BROWN: I'd like to kind of follow through on that too. I know that we all express support for direct payment for the family caregiver. However, concerns have been raised about the administration challenges such as the policy would create for VA, including tracking caregivers and monitoring for quality and effectiveness of care and liability protection.

Along those same lines, what are your recommendations for overcoming these challenges? I know that -- I think you mentioned about, you know, the burnout and, you know -- and how would you, I guess, distribute the caregiver's responsibility if we had a direct payment to the caregiver rather than, you know, going through the service person?

MS. COHOON: The direct payment, as Rene had mentioned, is something that our association has also supported for lots of different reasons. Mainly, 50 percent of our injured service members are single, and it is the parents that are stepping up and taking the role. And so there becomes an issue as far as they don't -- as Rene had mentioned -- not taking the money. But we are more in favor as far as for the payment to actually go directly to the caregiver on that piece.

REP. BROWN: But if it was multiple caregivers, wouldn't it be a logistical problem trying to generate a goodly number of checks? I'm just trying to put myself in that perspective. I know my wife was a caregiver for my mother-in-law for the last five years of her life. She was blind. And, you know, she stayed with us.

And she sort of assumed that total responsibility for her mother, although there was other siblings there that probably could have kicked in. And we didn't get any compensation for it. We did it out of a sense of love.

And so I would sense that that same thing would happen within the family of a wounded warrior. And if you gave a direct payment to just one, how would the other family members -- would they have some kind of responsibility to want to be able to participate in the caregiving? That would just be my concern.

MS. COHOON: Well, the -- Senator Akaka's bill actually talks about is that, one, a caregiver is designated. And that was what we had in our opening statement and is in our written, that you basically have a caregiver that becomes designated. What we've been finding is that, somewhere along the recovery process, one person actually finally steps forward and becomes the main caregiver.

Now, you may have some supplement that's going on or some hand- off that's going on. In other words, one will come in for four to five months, and then basically another person comes in and fills that particular role. But if you're going to be dealing with the compensation -- i.e., financial -- it has to be a designated caregiver.

One of the things we have talked about is that it should -- the training should not necessarily be just for one person, that others should be given the opportunity to also be trained, but not necessarily compensated in the same process; so that there is, especially if you've got mom or dad or have other people, that others can be providing the same role. But the compensation would only be for the one that was designated.

REP. BROWN: And you think the other members would be as enthused to be able to participate in caregiving if they weren't compensated?

MS. COHOON: I think it's difficult, even for the caregiver themselves, as far as just how to come up with a dollar amount as far as what they think the care is worth. It's very difficult as far as to quantify. If you're looking at the veteran, because the caregiver's been directly involved, they're more likely to take their medications on time, more likely as far as to go to their doctors on time. There's a lot of great communication that goes on between the doctors.

So the care level goes up. So the veteran, then, doesn't utilize the care system as often, and their care stays better a long period of time.

How do you quantify that particular dollar amount, when they have done so much preventative care and they're not having to need what you would call urgent or emergent care?

REP. BROWN: I applaud that idea. I think it's a whole lot better if the person can stay within the home environment where they're with people that they're comfortable with and they have a special love and attachment to, rather than putting them in, say, a nursing home or some other place.

You mentioned respite care. Is that working for you all?

MS. FRESE: To be honest with you, sir, the program is -- translates different on paper than they actually are translating in real life with the families. You know, it's inconsistent around the country. For families that live in rural communities, there may be a respite, a home health agency that may have a program.

But the respite programs, due to their rules and regulations, it confines the veteran to their home. You know, it's not allowing, like Rene talked about, the desired life of these young veterans to have someone come and relieve the caregiver. But then the veteran has to stay within the four walls of their home, because they're not allowed to -- the respite person's not allowed to take them out to the community or participate in life. Or their services are just not available, because they don't deal with this age population.

REP. BROWN: My last, I guess, statement would be more of a comment than a question. In the 2010, DOD has proposed legislation which would provide monthly compensation to catastrophically wounded service members to be used to compensate designated family caregivers. And what is your view of this proposal? In fact, we were trying to get some figures that might be recommended, but we haven't gotten those figures back yet. But what are your thoughts on that?

MS. COHOON: Our concern is in terms of being focused, again, perhaps on the wrong thing, and that is perhaps maybe moving the service member out of the DOD system too quickly before -- the servicemember or the family member -- to get them into the VA system. Again, it comes back to where the focus is. The focus should be on the service members, the families and what is going to be in their best interests in the long term.

They're in a crisis situation, really, in that point in time. And they don't even know what it is they need or what the future holds. And making determinations about the future in terms of money, where you're going to live, all those kinds of things you're just not necessarily prepared to address at that point in time.

Again, we go back to the fact that -- or go back to the need for a reciprocal program, one that DOD and VA come to the table and try to work out, again, to make that transition and that reintegration, because there will be reintegration again. They'll be moving in and out of both of those systems.

So while we applaud DOD in looking at that -- and really, truly, it is trying to get to where we need to be -- I think it still needs a little more work.

REP. BROWN: I want to say thank you very much for your service and for your compassion.

REP. MICHAUD: Mr. Boozman.

REP. JOHN BOOZMAN (R-AR): Thank you, Mr. Chairman.

I really don't have any questions. I just appreciate you all being here. The personal references and things are so helpful, you know, as we move forward with these things. So thank you very much for taking the time and, you know, being here and sharing your thoughts on this.

REP. MICHAUD: I also want to thank Mr. Boozman, who's the ranking member of the Economic and Opportunity Subcommittee, for all his work and efforts on that particular subcommittee.

Once again, I'd like to thank all three of you for your testimony here this morning. I look forward to working with you as we move forward with caregiver legislation this session. So thank you.

I'd ask the second panel to come forward. The second panel consists of Jill Kagan, who's chair of the ARCH National Respite Coalition; Suzanne Mintz, who's the president and co-founder of the National Family Caregivers Association; and Mark Heaney, who is president and chief executive officer of Addus Healthcare, Inc., National Association for Home and Hospice Care.

I'd like to thank all three panelists on the second panel for your testimony -- coming forward today to give your testimony for the Subcommittee on Health. I look forward to hearing what you have to say and have an open dialogue. And we'll start off with Ms. Kagan.

MS. KAGAN: Mr. Chairman and members of the subcommittee, as stated, my name is Jill Kagan. And I am chair of the ARCH National Respite Coalition, which is a division of the ARCH National Respite Network and Resource Center. I'm extremely honored to have this opportunity today to present testimony on the importance of respite as a critical need of family caregivers of veterans.

What is respite? Respite provides temporary relief for family caregivers from the ongoing responsibility of caring for an individual of any age with special needs. Respite is also an important continuum -- component of a continuum of comprehensive family support and long- term services that are available to caregivers, not only on a planned basis, but also in the event of a crisis or emergency situation.

Respite can and should be provided in home or out of home in a variety of settings, by trained respite providers with varying degrees of medical or mental health expertise, volunteers, neighbors, other family members or friends. Ideally, this array of options would be available to families on a daily, evening or weekend basis.

It was stated earlier that we know there are at least 50 million caregivers who are providing care at some point during the year. And while we don't know the specific number of family caregivers of veterans, we do know that out of an estimated over 26 million veterans, over nine million are 65 and older; an additional number, close to 6 million, have some form of disability. And while not all of them may be in a situation where they're requiring a caregiver right now, the chances are that in the near future they will require one.

What we do know is that the number of family caregivers is high of veterans, and continues to climb. For the soldiers who are returning from Iraq and Afghanistan in particular, new challenges are very evident because of their serious conditions that they're returning with.

According to a recent study by the VA Geriatrics and Extended Care Polytrauma Rehabilitation Task Force, and I quote, "As many of these seriously injured veterans may require support and assistance for many years, the caregivers will face many physical and emotional challenges over time."

VA currently provides support to caregivers through a variety of programs. However, there are locations in which caregiver support is minimally available and the task force anticipates considerable challenges in reliably meeting the caregiver support needs in all communities.

We all know that the trend over the last decade has been toward community and home-based services and away from institutional care. This is preferred as long as, in the community, there are sufficient supports necessary to make this transition a successful goal.

With family caregivers now providing 80 percent of long-term care at home, their need for support is absolutely critical and significant. And among families we just heard, among those who ask for help, respite is often at the top of their list. It's very hard to go out and do something else if you're not even able to take a break.

Respite has been shown to be effective in improving the health and well-being of family caregivers; that, in turn, helps avoid or delay out-of-home placement, such as nursing home or foster care, and minimizes the precursors that can lead to abusive or neglectful situations. It has been shown to strengthen marriages and family stability.

There are many other studies within my written testimony that are summarized that confirm these findings, as well as the long-term economic benefits of respite, which, in and of itself, is a low-cost service to provide.

Yet despite these benefits, respite remains largely unused, in short supply, inaccessible or unaffordable to not only veterans and their family caregivers, but to the majority of the nation's family caregivers.

The barriers to accessing respite are many and have been defined in the literature. They include cost, reluctance to ask for help, failure to identify as a caregiver, fragmented and narrowly targeted services, a lack of respite options, and a lack of information about how to find or choose a provider.

There's also restrictive eligibility criteria in many federal and state programs that preclude many families from receiving services, especially those in the age group 18 to 60, for which there are almost no programs for respite for which these families qualify. And many would have conditions such as ALS, MS, cancer, spinal cord or traumatic brain injuries, and this is the very population in which our wounded warriors are coming back from Iraq and Afghanistan, in that age group for which there are the fewest respite options.

In fact, the task force that I mentioned earlier at the VA, one of their major recommendations was to improve access to and utilization of respite services for younger veterans.

Again, for this population -- and we heard it from the families who spoke before -- even though the VA has the authority to provide respite in home and in other settings, it's often underutilized. There may not be enough in-home providers in many communities, rural areas and urban areas alike. And inpatient care, which is generally available in a community nursing home or VA hospital, is not particularly desirable among the younger veterans and their families. But most importantly, there's a shortage of well-trained staff who are qualified to provide respite to this population.

While family caregivers of veterans face many of the same barriers as the general populations, they do face these additional special barriers, and we have to find ways to specifically address them.

The VA also requires co-payments for non-exempt veterans for extended-care services, including respite. And for many of these families, who are already under financial duress, those who have had to give up employment in order to provide their caregiving, respite is perceived as an absolute luxury that they cannot afford. It falls to the absolute bottom of the list of things that they need.

Currently, the VA requires co-payments ranging from $15 per day for non-institutional adult day health or respite care to $97 a day for institutional respite care.

And then, of course, there are those veterans whose household income exceeds both the VA national income threshold and do not have a compensable VA service-connected disability, who may have a disability, but are not eligible for VA care.

Of course, they are free to turn to state or federal or local funding sources to find respite, but that system is already overburdened and unable to keep up with the increasing demand.

There are disparate and inadequate funding streams for respite in many states. And even though the largest source of federal funds for respite outside the VA is available through Medicaid home and community-based waivers, these waivers have very restrictive eligibility criteria and long waiting lists.

There are numerous other federal and state categorical programs that have the potential to fund respite for caregivers, again, but if you don't have a specific disability or fall into a specific age group or have a specific income, you don't qualify.

All of these piecemeal respite funding streams provide a very critical foundation on which to build systems of respite care, but they don't currently do enough to reduce the fragmentation, the inaccessibility and the confusion that exists, and families are forced to try to navigate that bureaucratic maze themselves.

Now, there has been a response. The states responded back in 1997 with lifespan respite systems, which are coordinated systems of community-based respite services that help states use limited resources, maximize use of resources across ages and disability groups. Pools of providers can be recruited, trained and shared. Administrative burdens can be reduced by coordinating resources, and the savings used to fund new respite services.

Some of these model programs are in Oregon, Nebraska, Wisconsin, Oklahoma, and, most recently, Arizona, and these programs are having as their goal the ability to have respite services through a single point of entry, ensure flexibility.

REP. MICHAUD: Could you kind of -- you're three minutes and 45 seconds over, and we're going to have votes shortly. So if you could please sum up.

MS. KAGAN: I'll go right to my recommendations.

Recently, Congress did enact a Lifespan Respite Care Act, which would expand those systems of care to hopefully, eventually, all 50 states, and those fundings are becoming available this week through the Administration on Aging. That would do a lot to improve the respite care system and make many more services available to veterans and their families.

And my recommendations center around collaborating with these state lifespan respite programs, urging the VA to collaborate with state lifespan respite programs; to do more training and recruitment of providers, especially for veterans with TBI and spinal cord injuries and other polytraumas; to collaborate with state lifespan respite programs to promote consumer direction so that families can get vouchers and have greater option of the types of respite providers they would like to use and what's most beneficial for them and the person they're caring for.

Also, it should be investigated if the VA has a possibility to reduce or eliminate some of the mandatory co-payments for respite; and, of course, ultimately, to link these veterans directly, and their families, to existing lifespan respite programs or state respite coalitions that are already out there that can help them find sources of payment, as well as providers.

Thank you.

REP. MICHAUD: Thank you.

Ms. Mintz?

MS. MINTZ: Mr. Chairman, members of the subcommittee, thank you for recognizing that family caregivers play a critical role in the lives of veterans with chronic conditions and disabilities, and that because of this role and its consequences, family caregivers have special needs of their own.

For those of us who advocate for family caregivers, this is an auspicious day. I am honored to have this opportunity to speak on behalf of veterans and their family caregivers.

My name is Suzanne Mintz. I am president and co-founder of the National Family Caregiver Association. NFCA is the nation's premier organization for family caregivers. We reach across the boundaries of different diagnoses, different relationships, and different life stages to address the common needs of concerns of America's family caregivers.

I am not a veteran, nor is my husband, Steven (ph), but we both have much in common with the young veteran families who are dealing with physical and/or mental disabilities that they acquired in the Iraq and Afghanistan wars. These families are the focus of my testimony.

Like them, our lives changed suddenly when we were young and had our hopes set on a bright future. When I was 28 and he was 31, Steven was diagnosed with multiple sclerosis, which, as you may know, is an incurable neurologic disease that impacts function and, at times, cognition.

I can tell you that these young veterans who are returning from war with severe physical or mental disabilities are frightened. They and their family members are going through a grieving process, each having their own reaction to the nightmare that has become their lives.

They need help and assistance individually and collectively. They need to know that their feelings and fears are normal. More than anything else, they need to know that they don't have to work through their new challenges alone. They need the assistance of a navigator, a coach, a community-based care team that is their designated advocate, who is always available. Just knowing that the team is there for them will make a huge difference.

Those with the most extensive physical or mental disabilities need these services the most, potentially for life. Their needs must be looked at holistically and services must be provided as seamlessly as possible. They shouldn't have to figure out which benefits they're eligible for, nor should they have to go through the process of directly applying for them. Their lives are hard enough now.

And that's where the care team concept comes in. It is the team's job to help these families find a new normalcy. It takes time and plenty of support.

Diminishing the hassle factor is one of the most important things that the VA can do, especially as veterans move from DOD to VA. Seamlessness is definitely the goal.

Some may think of this as care management. I would describe it as care management on steroids, with the recognition that this is more than a one-person job, and that, for the designated families, it needs to be the norm.

The VA Health Administration and Veterans' Administration have put together an extraordinary number of programs to support these families, some of them specifically aimed at the family caregiver. There are 13 in all. They can be grouped in four broad categories.

There are two respite programs for family caregivers, two health care delivery programs, three non-medical and community-based service initiatives, and six programs dealing with transportation and housing. They all have their own criteria. Some are benefits, and some are health care services. They are all wonderful programs.

But to make as positive a difference as possible in the lives of these families, the appropriate ones must be bundled together into a comprehensive plan of care that recognizes all aspects of these families' lives that have been impacted, whether the solutions for them can be found within the VA system or not. It is a complex process.

I especially like the programs that are flexible and allow their families to make their own decisions about how they want to live their lives. The Bladder & Bowel Program allows a veteran to choose whomever he or she wants to help with these intimate details, as long as the person receives some training. The Home and Community-Based Services Program uses the cash and counseling Medicaid concept, where the beneficiary receives funds to use as he or she determines would be best. Fiscal intermediaries provide assistance.

In both cases, these are not site-specific. The benefit is the means to finding the solutions that work. This is especially important for veterans and their families who do not live near VA facilities and need to really think out of the box to have a meaningful quality of life.

This is where the community-based care teams can help the most. They can aggregate program funds and find ways to fill gaps that stay within budget parameters, while meeting the needs of beneficiaries and their families at the same time. Priority one must be the health and well-being of these families. The challenge is to create a bundle of services that are tailored to each family as quickly as possible, and with a clear focus on quality and safety. It's one thing to have programs. It's another thing to implement them well.

I think it's important that the VA create an atmosphere that fosters spirit-of-the-law decisions and actions as opposed to hard- line interpretation of benefits. Each family living with TBI is different. Each family living with a spinal cord injury is different. Programs need to be adaptable to meet their specific needs, to help them find the new normal.

The VA faces challenges as it strives to meet the needs of these veteran families and all of its beneficiaries, even the ones who are not part of the current returning crew. It will require the energy and dedication of all employees and the recognition that proper staffing levels can mean the difference between success or failure, an error-free program or one rife with problems.

Washington was scandalized by the news of the horrible conditions at Walter Reed, not only the physical conditions, but, perhaps more importantly, the procedural ones that made veterans wait an inordinate amount of time for their claims to be processed, in many cases then be denied. And we know that this isn't just the situation here. No matter how good the family programs are, they're irrelevant if vets can't access them and if they can't be provided in the safest and most respectful and flexible way possible.

Mr. Chairman, members of the committee, that is your challenge, to help put that kind of network in place. Thank you.

REP. MICHAUD: Thank you.

Mr. Heaney.

MR. HEANEY: Thank you, Mr. Chairman. And thank you for allowing me to testify. My name is Mark Heaney. I am president and CEO of Addus Health Care. We're based in northwest suburban Chicago.

Addus is a national provider of home care services, including services to a number of our nation's veterans. As the proud son of a World War II naval officer, medically retired. I honestly can't think of a place I'd rather be today. And I'm very proud to be here, frankly, to testify and contribute.

I prepared, for today's hearing, assuming that while the focus of the hearing may be on specific proposals to require the Veterans' Administration to increase its involvement in and support of family caregivers of eligible veterans, the hearing may also cover other home-based services provided through the Veterans' Administration in support of all worthy and eligible veterans.

For your information, Mr. Chairman, Addus Health Care is a provider of home care services through direct contracts with and referrals from the Veterans' Administration, as well as being a provider to individual veterans through the Aid and Attendance program.

For the purposes of this testimony, I define a family caregiver as both the family member who is the primary care person, the person most responsible for continuing care for the at-risk veteran, as well as the larger family, all family members engaged in the complex set of needs that need to come together to help keep a veteran at home in the community where they want to be.

In our current services to veterans, which includes home health care, home care aide services, companion care, transportation, meal assistance, adult day care and a host of other activities of daily living, including being a fiscal intermediary, we commonly provide guidance, respite, training, assistance and oversight to families and family caregivers.

We work with families to coordinate care, to supplement, to extend care, but not to duplicate services already provided by the family. By this, I make the point that home care agencies can and already do responsibly support and assist family caregivers. But the testimony today also indicatesthat home care agencies should be part of the solution and not relied upon as the solution; part of the solution especially responsive to the family.

Our services are provided by trained, often licensed personnel working in a structured, monitored and accountable system. Employees are screened. Background checks are conducted. Pre-service and in- service training is conducted. Care is provided according to a written plan of care, prepared in cooperation with the consumer or the responsible family member. The quality and consistency of care is supervised. Changes in the veteran's need or condition are noted. And responsible persons, including the family members, are notified.

The most effective approach to delivering care in the home to this population is one where the consumer, or their designate, is, to the maximum extent of their ability or desire, at the center of the care delivery process. This is especially evident in delivering care or providing assistance to younger disabled veterans and consumers, where their interest in and their ability to self-direct their care is fundamental to the success of the service offering.

With self-direction and consumer involvement an important objective, the first goal of a care delivery system must be to assure the care is delivered safely, consistently and accountably. We would be, and are, concerned with any system of care in the home to the truly needing, to the truly at-risk, which does not include minimally appropriate safeguards for consumers and caregivers alike.

As such, we strongly believe that all of the steps taken by licensed home care agencies to screen, train, monitor employed caregivers should also be applied in a family caregiver program. This is the best way to safeguard the veterans, the caregivers and the integrity of the program. Thank you.

REP. MICHAUD: Thank you very much. I have no questions. I'll be submitting questions in writing. It's my understanding Mr. Brown has not.

Ms. Halvorson?

REP. DEBORAH HALVORSON (D-IL): Thank you, Mr. Chairman.

And thank you, panelists. It's good to see all of you. I just have one quick one. My district in Illinois is a mix of everything. But I'm specifically concerned about my rural areas. How available is respite care in the rural areas? And what are we doing for the families who can't get it? And I don't know if there's any specific one of you that wants to answer that. I don't know about Ms. Kagan, if you want to start it out.

MS. KAGAN: There are dramatic shortages of well-qualified and trained providers, especially in rural areas. Fortunately, we have just enacted a federal law that I talked about in my testimony called the Lifespan Respite Care Act, which states are now applying for currently.

There is also an Illinois Respite Coalition that's very active in your state, and they're doing a lot to try to recruit and train providers in those areas and provide transportation as well. That's a critical issue. It's one thing to have a program. But if you can't get to it, that's another tremendous barrier, but to make sure that even in those rural areas the people are thinking outside of the box on how to provide those services in a way that uses what's already there. It doesn't have to necessarily be an expensive effort.

MS. MINTZ: Rural areas are challenges, whether it's VA services or any services. And I think it becomes incumbent upon the community to find creative ways. There are a number of volunteer programs that are popping up around the country that help bring people together who want to help.

There's a program called Lots of Helping Hands, which is essentially a website program that uses family and friends to help the family caregiver get a break by taking on some of the basic responsibilities. So whether it's bringing meals on Tuesdays or driving the kids, you know, to church on Sunday morning, because it becomes micro tasks, it's not difficult for volunteers to say yes. And cumulatively, it does then help the family caregiver.

And so we definitely need to find creative mechanisms in rural areas. It's certainly a great place for Vista type program.

REP. HALVORSON: Addus does a great job in Illinois. And, Mr. Heaney, thank you.

MR. HEANEY: Thank you. Congresswoman, I know that you know -- I know where your question comes from, because I know your history of support to the community care program in Illinois. And we've very grateful for that.

MR. HEANEY: I learned something today. I've actually been doing this for 30 years. This is my 30th year in home care. And I learned today, and I wrote a note to myself, that word respite. I actually -- my answer is that -- and actually, it's Ms. Kagan's testimony that made me realize it.

The answer I'll give you is that in rural communities, we actually were able to find caregivers. Wages are going up, appreciation for the services increasing. We're able to find caregivers. We're able to screen them. And we just have to be -- I think we have to be diligent. But the respite service is not promoted. I don't think it's known, and, actually, worse, I think sometimes it's seen as non-essential.

In listening to the young lady who spoke initially and to Ms. Kagan's testimony and to Ms. Mintz's testimony, I realize how critical that service is for what is a voluntary caregiver -- by the way, everybody's working. It's dual-income households, right? And I've learned something today and I'll use that in my policy work.

REP. HALVORSON: Thank you. Thank you all very much.

REP. MICHAUD: Once again, I would like to thank all three panelists for your testimony this morning. I look forward to working with you as we move forward to dealing with this very important issue.

Thank you.

MR. HEANEY: Thank you so much.

REP. MICHAUD: I'd ask the third panel to now come forward. That's Dr. Agarwal, who is chief patient care service officer within VHA; Edward Walker, who is the acting assistant secretary of aging of the U.S. Department of Health and Human Services; and Noel Koch, who's the deputy undersecretary for the Office of Transition Policy and Care within the U.S. Department of Defense.

I want to thank all of you for coming here today to give testimony on this very important issue.

DR. AGARWAL: Mr. Chairman and members of the subcommittee, thank you for providing me the opportunity to discuss VA's program and support of family caregivers.

I would like to thank the committee for bringing together representatives from DOD and AOA, as we continue to work closely with these organizations to ensure that best practices are shared and adopted.

Jointly administered programs, like the federal recovery coordination program of the DOD and the veteran-directed common community-based services program with AOA, provide real examples of ways the federal government is working in coordination to support veterans and their caregivers.

My written statement, which I ask to be submitted for the record, describes in detail the two themes I would like to emphasize now: The strength of our current programs and the six principles that guide our present and future programs for caregivers.

VA recognizes and deeply appreciates the critical role that they play in supporting veterans. VA currently contracts for caregiver services with more than 4,000 home health and similar public and private agencies approved by Medicare or Medicaid or through some state licensure.

In these arrangements, as well as through the veteran-directed common community-based service program I referenced earlier, VA contracts with the agency, which trains and pays the caregiver directly. VA also ensures these home health agencies meet and maintaining training and certification requirements specific to caregivers.

This model has several advantages. First, it does not divert VA clinical resources from direct treatment of veterans. Second, it allows direct communication between the veteran and the home health agency or state area agency on aging regarding caregiver selection and satisfaction.

Third, these agencies have expertise in training caregivers and certifying home health aides, including family members, and many operate in rural communities.

VA administers many different programs related to caregiving, including adult day health care, home-based primary care, home improvement and structural alteration grants, specially adaptive housing and automobile grants, volunteer respite, and medical foster homes. These are just to name a few.

Respite care is an essential component of caregiver support. It temporarily relieves the spouse or other caregivers 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 the nursing home, the adult day health care facilities in the community, and in the veteran's home.

In addition, VA is 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.

VA believes a caregiver program should adhere to certain principles to ensure that it is veteran-centric and effective.

First, veterans should be free to choose a caregiver. The department needs discretion to recognize the unique needs of each veteran and to honor the veteran's choice.

Second, training for caregivers should be designed to provide them with the skills needed to safely perform necessary personal care. While VA currently works with family members or other attendants before they leave a VA facility and educates them on care related to the veteran's condition, a host of local agencies have substantial expertise in training and certification. Leveraging these resources will be most effective and responsive in meeting the current as well as the changing needs of the veterans.

Third, caregivers who must sacrifice employment opportunities to care for loved ones may require financial support. This support is best provided through intermediary agencies, like the home health aide organizations, which can employ the caregiver directly, allowing that person to accrue Social Security, health care, wages and other benefits.

While VA programs such as aide and attendant and special monthly compensation do not provide payments to caregivers, these programs do provide direct payments to qualifying veterans.

Fourth, caregivers often need medical or social support to allow them to continue caring for the veteran. VA is authorized to provide medical care to non-veterans on a humanitarian basis in an emergency situation, but we are required by law to charge the recipient of this care.

We can provide mental health care and counseling to members of the veteran's immediate family, their legal guardian, and the homeowner of the property where the veteran lives, so long as the care is in connection with the treatment of the veteran.

Fifth, any enrolled veteran with a serious physiological or psychological, neurological or other condition should be eligible for these benefits, as determined by the secretary.

Finally, VA should preserve its current variety of programs, which have been designed to meet the diverse and changing needs of different patient populations. Elderly veterans require different support mechanisms than veterans with quadriplegia or those with traumatic brain injury. Maintaining programs tailored for different populations ensures that VA offers optimal care to veterans.

In 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. We will continue to enhance our programs and strengthen our collaborations with others, such as DOD and HHS.

Thank you again for this opportunity. We are prepared to answer your questions.

REP. MICHAUD: Thank you.

Mr. Walker?

MR. WALKER: Mr. Chairman and distinguished members of the committee, I want to commend you for recognizing the important role that caregivers play.

For more than 40 years, the U.S. Administration on Aging has provided national leadership, funding, oversight and technical support to a vast national Aging Network that reaches into every community in this country, plays a key role in delivering consumer-centered services, and is the leading provider of home and community-based long-term care services to vulnerable Americans and their caregivers.

You've heard from the distinguished preceding panelists about the diverse characteristics and complex needs of caregivers. I'd like to highlight how we are working to address them and to highlight innovative approaches to better meet their needs, including our recent collaboration with the Department of Veterans' Affairs to establish a veteran-directed home and community-based services program.

The AOA national family caregiver support program integrates the needs of caregivers with the provision of home and community-based services and has created a multifaceted system of services for caregivers, including information about assistance in gaining access to services, individual counseling, organization of support groups and training, respite care, and other supplemental services.

The caregiver program acknowledges the central role of caregivers in our health and long-term care delivery systems and has allowed the Administration on Aging and its Aging Network the opportunity to infuse the principles of consumer direction into existing service programs, to address the challenges of serving caregivers in both urban and rural areas, to provide a broad range of services for diverse age groups, and to ensure that programs serve consumers in culturally competent ways.

Our Aging Network has had a positive and significant impact in the lives of caregivers by supporting the work they do. Through our caregiver program, we annually touch the lives of more than a million people, with more than 81 percent indicating that the program enabled them to care for their loves ones longer, thereby avoiding costlier and more restrictive placement in an institutional setting. And 75 percent indicated it helped reduce their stress, with nearly half of them indicating and highlighting the importance of respite care. And as Ms. Kagan mentioned, the Administration Aging has just made available an opportunity for states to apply for funding for lifespan respite services for persons of all ages.

The Department of Veterans' Affairs and the Administration on Aging have a shared commitment to meeting the needs of consumers and their families on their terms and according to their needs and preferences. And we know that both younger veterans and older adults want to be in charge of their own lives and to direct their own service needs. Further, we recognize the importance of partnering with the VA at the local level to meet the needs of veterans.

In Maine, for example, our local area agencies on aging coordinate services and benefits for veterans in collaboration with the local veterans' homes and others throughout the state, as well as having veterans' advocates, community information staff, and adult day programs to assist veterans and their caregivers.

AOA and the VA are jointly funding our community living program and the veteran-directed home and community-based services program. Through this, veterans of all ages are able to direct and purchase their services and supports through the Aging Network, which assesses the needs of veterans and caregivers, develops care plans, supports veterans through the provider selection process, arranges for financial management services, and, most importantly, develops a professional relationship with the veterans to ensure they receive the services as planned to meet their needs and to make changes where necessary.

We've funded 20 states, 10 of which provide veterans-directed services. And I'm pleased to report that in Michigan and New Jersey, the program is producing results after just a few months.

In Michigan, for example, a 74-year-old veteran living in an assisted living facility was able to move out of the facility and into his own apartment, where he has hired a personal aide who works for him 40 hours a week, providing the supports he needs to remain independent and living at home. They report he's doing very well.

By building on the capacities and the infrastructure of the Aging Network, the VA is already helping to ensure a coordinated, consumer- centered approach to serving the needs of veterans and their caregivers. In fact, I'm very pleased to announce that the secretaries of HHS and VA today announced the provision of an additional $10 million to expand this program to other states, taking another significant step toward the goal of nationwide home- and community-based long-term supports to serve older Americans, persons with disabilities, and veterans of all ages.

As the VA and AOA move forward in our collaborative efforts, the Aging Network stands ready to put its years of experience honoring and serving older persons to work serving those brave men and women who have served our country so honorably.

Mr. Chairman, thank you for this opportunity. I'd be happy to answer any questions you or members of the committee may have.

REP. MICHAUD: Thank you, Mr. Walker.

Mr. Koch?

MR. KOCH: Mr. Chairman, Congressman Brown, distinguished members of the panel, I have a written statement which I'd like to submit for the record, and I'll just make a few brief remarks.

REP. MICHAUD: Without objection, so ordered.

MR. KOCH: Thank you.

Mr. Chairman, first of all, I want to say that -- what a privilege it is to have the responsibility that we share with this committee and with my colleagues at the Department of Veterans' Affairs in addressing an issue that Secretary Gates has said is second only to the war in terms of the importance that we assign to it.

The reason that we assign such importance to it should be evident. I think it was evident in the emotionally wrenching testimony that the first panel delivered. And if that's not sufficient, there's a recent completion of a report done by the Center for Naval Analysis which, if you don't have that, we'd be happy to provide it to the committee.

But it gushes in a very scientific fashion and in a very granular way the burdens that are placed on family caregivers. And these include loss of income, people having to give up their jobs. We know what the average numbers are for that, and we are moving to prepare to deal with that. So that's an effort that's in train.

The overall function of my office, which is newly created, I must say, Mr. Chairman, Transition Policy and Care Coordination, is to effectively make the boundaries between the Department of Defense and the Department of Veterans' Affairs as permeable as we can get them so that we can smooth the transition from -- of a wounded service member either back into active service or, if it's going to be necessary for them to transition into status as a veteran, to make that run as smoothly as we possibly can. And I think we're well along in that effort.

In addition to that process which is underway, we provide other sources of information. And I have to say that, as I've gone through this, the information that we provide, I'm not satisfied that it's easily accessible. We're finding a great deal of duplication, of redundancy.

And so one of the things we'll be trying to do is to compress this so that it is, in fact, useful, that it does, in fact, constitute information and not just so much more e-mail and ether-driven stuff on websites. And so that's one of the issues that we're trying to address now.

Finally, we have -- we will be delivering within the -- well, a little more than a month; it's in coordination now at DOD -- instruction on the recovery continuation program. And I think that that will contribute to the effort that we have underway with the Veterans Administration, with our recovery care coordinators, with the federal recovery coordinators, with a number of the initiatives which are in train. Some are actively functioning now, but they address in toto the issues that have been raised today.

I think we want to keep in mind before I conclude, sir, that we are focused on family caregivers. And the institutional resources that are available to support those efforts are important, but I think what we want to not lose sight of are the individual families. Typically, the mothers are the ones that are carrying the biggest burden. And these are the ones that we want to consider first as we look at this issue of providing care to the caregivers.

Thank you.

REP. MICHAUD: Thank you very much.

And I thank the other two panelists for your excellent testimony this morning.

And if you could provide a copy of that report to the committee, I'd appreciate it.

MR. KOCH: Yes, sir.

REP. MICHAUD: Thank you.

Mr. Brown?

REP. BROWN: Thank you, Dr. Koch, for being here this morning. And we heard some questions -- I guess you heard the previous panel. For 2010, DOD has proposed legislation which would provide monthly compensation to catastrophically wounded service members to be used to compensate designated family caregivers.

What is your view of this proposal? And how much compensation would it actually be? Do you have a feel for it?

MR. KOCH: Are you addressing that to me, sir? I'm sorry. I'm going to have to ask you to repeat the question. And I may not be familiar with the subject sufficiently that I'd have to --

REP. BROWN: Okay. Well, I'll -

MR. KOCH: -- address it here without responding in writing.

REP. BROWN: Okay. Well, we'll get -- we can submit it in writing and let you give me an answer back would be fine.

MR. KOCH: All right. sure.

REP. BROWN: You heard the previous panel. They were talking about maybe directly paying to the caregiver rather than paying to the -- you know, to the wounded veteran.

MR. KOCH: Correct.

REP. BROWN: Do you have an opinion on that?

MR. KOCH: Do I have an opinion on their concerns about our care for wounded veterans?

REP. BROWN: No, the method in the way the caregiver is being paid. I think it goes to the veteran, and then he actually pays the caregiver.

MR. KOCH: All right, I understand. This is a somewhat complicated issue here. The question of who is the recipient of the support is the issue. And there's a point beyond which we can't control how families function. So in some cases, the concern is the money goes to the family, and the family spends it, and it's not spent on care; it's not spent on the purpose that it's been provided for. Suggestions that we provide it directly to the service member raise some of the same concerns. So this is just -- it's not something -- there's a point beyond which we can't manage the way human beings conduct their lives.

I mean, everybody has a suggestion, and usually that suggestion is a function of some personal experience or something that they're familiar with that has worked out badly -- money's been wasted, care has not been provided and so forth. And it's difficult to come up with a solution to that, because that solution is going to have second-order consequences that are going to just have some disaffecting role for somebody else.

REP. BROWN: And I guess that's the reason we have hearings so we can get, I guess, the issues on both sides.

Dr. Agarwal -- is that correct? Okay. We've heard testimony that access to resources and information for family caregivers is highly variable, and there is not any standardized and ongoing training of any formal support network. How would you respond to those concerns?

DR. AGARWAL: Thank you for the question, sir.

We certainly are making efforts in doing better outreach about our programs. We've had an initiative known as the Combat Call Center Initiative, which was instituted by Secretary Peake last year, which reached out to about 16,000 veterans who were identified in the seriously ill category during the transition process and were given information on our current programs, particularly about the case management program and other services and also offered services at that time.

The Federal Recovery Coordinator Program, again, for the seriously injured veterans, this resource has been, really, I think, amplifying in helping us with navigating between the VA, the DOD as well as the private sector. They have a resource directory, which I think is a useful resource for the caregivers and the families.

We have a set of liaisons in the military treatment facilities and a case management system which is very knowledgeable about the programs that we offer, and we are working to improve and align our outreach through the Internet, the Intranet and My HealthyVet.

REP. BROWN: So you basically have a website which has these services that's available --

DR. AGARWAL: We are currently working toward that.

REP. BROWN: -- and how to get those resources?

DR. AGARWAL: We are working on it, sir. It's in development phase.

REP. BROWN: Okay. I know this is one of the, I guess, concerns we have most of the time. We have some needs, and we have the ability to meet those needs, and sometimes it's difficult to meet those or connect those resources. But thank you.

Thanks to the rest of the panel too for being a part of this process.

REP. MICHAUD: Ms. Halvorson?

REP. HALVORSON: Thank you, Mr. Chairman.

And thank you, panelists, for being here.

What kind of challenges are you seeing with those that are older veterans versus those returning veterans that are coming back now? They're younger. They've probably got different problems. What are the challenges that you're seeing dealing with the two different --

DR. AGARWAL: Again, thank you for that question.

We recognize the sacrifice and services of our newer generation of the veterans as well. We have an area of programs to provide care in the least restrictive settings, which need to be age-appropriate and person-centered. And taking into account their preferences, including the family's preferences, we are looking for ways to adapt them so that we are more acceptable in meeting those expectations of this disabled veteran group.

We are becoming much more conscious and aware of it and therefore providing training in all our educational forums and conferences about the needs for the caregivers and what support we can provide. I had just previously mentioned some of the things that we are currently doing, but I'm going to turn it over to Dr. Beck to give some specific examples.

DR. BECK: Thank you.

For some of the challenges that we are facing with our younger veterans is developing and implementing a system of care that provides a lifelong set of services. We are increasingly concerned with vocational pursuits of supported work environments, and the goal of returning our younger veterans to an independent least restrictive environment in which to provide care and services. And for that reason, some of the programs that we have discussed -- the residential rehabilitation programs, the adult day care programs -- we are individualizing those programs and specializing them so that they address our younger veterans. Our younger veterans are very technology-savvy. They're very interested and concerned with sports and fitness and leisure-time activities, so we are adding these services.

And we have dynamic family environments. We have younger veterans who are parents, and so, in addition to providing a supportive environment where we provide child care, we are using the goals that those veterans have to be good parents, to be good spouses, and incorporating those elements of care into our rehabilitative environments.

REP. MICHAUD: Thank you very much.

They just called for votes, so you're saved by the bell, but I do have several questions. In respect for the panel's time and others in the audience, since we have several votes coming up, I will submit the questions in writing.

So I want to thank this panel and the previous two panels for your testimony this morning. I look forward to working with you as we move forward in this very important issue as it relates to caregivers and our veterans. So thank you very much for coming.

The hearing is now closed.

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