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[House Hearing, 111 Congress]
[From the U.S. Government Publishing Office]

                      MEETING THE NEEDS OF FAMILY
                         CAREGIVERS OF VETERANS

=======================================================================

                                HEARING

                               before the

                         SUBCOMMITTEE ON HEALTH

                                 of the

                     COMMITTEE ON VETERANS' AFFAIRS
                     U.S. HOUSE OF REPRESENTATIVES

                     ONE HUNDRED ELEVENTH CONGRESS

                             FIRST SESSION

                               __________

                              JUNE 4, 2009

                               __________

                           Serial No. 111-26

                               __________

       Printed for the use of the Committee on Veterans' Affairs

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51-865                    WASHINGTON : 2010
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                     COMMITTEE ON VETERANS' AFFAIRS

                    BOB FILNER, California, Chairman

CORRINE BROWN, Florida               STEVE BUYER, Indiana, Ranking
VIC SNYDER, Arkansas                 CLIFF STEARNS, Florida
MICHAEL H. MICHAUD, Maine            JERRY MORAN, Kansas
STEPHANIE HERSETH SANDLIN, South     HENRY E. BROWN, Jr., South 
Dakota                               Carolina
HARRY E. MITCHELL, Arizona           JEFF MILLER, Florida
JOHN J. HALL, New York               JOHN BOOZMAN, Arkansas
DEBORAH L. HALVORSON, Illinois       BRIAN P. BILBRAY, California
THOMAS S.P. PERRIELLO, Virginia      DOUG LAMBORN, Colorado
HARRY TEAGUE, New Mexico             GUS M. BILIRAKIS, Florida
CIRO D. RODRIGUEZ, Texas             VERN BUCHANAN, Florida
JOE DONNELLY, Indiana                DAVID P. ROE, Tennessee
JERRY MCNERNEY, California
ZACHARY T. SPACE, Ohio
TIMOTHY J. WALZ, Minnesota
JOHN H. ADLER, New Jersey
ANN KIRKPATRICK, Arizona
GLENN C. NYE, Virginia

                   Malcom A. Shorter, Staff Director

                                 ______

                         SUBCOMMITTEE ON HEALTH

                  MICHAEL H. MICHAUD, Maine, Chairman

CORRINE BROWN, Florida               HENRY E. BROWN, Jr., South 
VIC SNYDER, Arkansas                 Carolina, Ranking
HARRY TEAGUE, New Mexico             CLIFF STEARNS, Florida
CIRO D. RODRIGUEZ, Texas             JERRY MORAN, Kansas
JOE DONNELLY, Indiana                JOHN BOOZMAN, Arkansas
JERRY MCNERNEY, California           GUS M. BILIRAKIS, Florida
GLENN C. NYE, Virginia               VERN BUCHANAN, Florida
DEBORAH L. HALVORSON, Illinois
THOMAS S.P. PERRIELLO, Virginia

Pursuant to clause 2(e)(4) of Rule XI of the Rules of the House, public 
hearing records of the Committee on Veterans' Affairs are also 
published in electronic form. The printed hearing record remains the 
official version. Because electronic submissions are used to prepare 
both printed and electronic versions of the hearing record, the process 
of converting between various electronic formats may introduce 
unintentional errors or omissions. Such occurrences are inherent in the 
current publication process and should diminish as the process is 
further refined.

                            C O N T E N T S

                               __________

                              June 4, 2009

                                                                   Page
Meeting the Needs of Family Caregivers of Veterans...............     1

                           OPENING STATEMENTS

Chairman Michael Michaud.........................................     1
    Prepared statement of Chairman Michaud.......................    32
Hon. Henry E. Brown, Jr., Ranking Republican Member..............     2
    Prepared statement of Congressman Brown......................    32

                               WITNESSES

U.S. Department of Veterans' Affairs, Madhulika Agarwal, M.D., 
  MPH, Chief Officer, Patient Care Services, Veterans Health 
  Administration.................................................    23
    Prepared statement of Dr. Agarwal............................    66
U.S. Department of Health and Human Services, Edwin L. Walker, 
  Acting Assistant Secretary for Aging, Administration on Aging..    25
    Prepared statement of Mr. Walker.............................    71
U.S. Department of Defense, Noel Koch, Deputy Under Secretary of 
  Defense, Office of Transition Policy and Care Coordination.....    27
    Prepared statement of Mr. Koch...............................    75

                                 ______

ARCH National Respite Coalition, Jill Kagan, MPH, Chair..........    15
    Prepared statement of Ms. Kagan..............................    49
Military Officers Association of America, Commander Rene A. 
  Campos, USN (Ret.), Deputy Director, Government Relations......     6
    Prepared statement of Commander Campos.......................    36
National Association for Home Care and Hospice, Inc., Mark S. 
  Heaney, Home Care Aide Section Representative, and Member, 
  Board of Directors, and President and Chief Executive Officer, 
  Addus Health Care, Inc., Palatine, IL..........................    20
    Prepared statement of Mr. Heaney.............................    62
National Family Caregivers Association, Suzanne G. Mintz, 
  President and Co-Founder.......................................    18
    Prepared statement of Ms. Mintz..............................    58
National Military Family Association, Barbara Cohoon, RN, Ph.D., 
  Government Relations Deputy Director...........................     7
    Prepared statement of Dr. Cohoon.............................    42
Wounded Warrior Project, Anna Frese, Family Outreach Coordinator 
  for Brain Injury...............................................     3
    Prepared statement of Ms. Frese..............................    33

                       SUBMISSION FOR THE RECORD

Disabled American Veterans, Adrian Atizado, Assistant National 
  Legislative Director, statement................................    77

                   MATERIAL SUBMITTED FOR THE RECORD

Post-Hearing Questions and Responses for the Record:

Hon. Michael H. Michaud, Chairman, Subcommittee on Health, 
  Committee on Veterans' Affairs, to Hon. Eric K. Shinseki, 
  Secretary, U.S. Department of Veterans Affairs, letter dated 
  June 10, 2009, and VA responses................................    84

 
           MEETING THE NEEDS OF FAMILY CAREGIVERS OF VETERANS

                              ----------                              

                         THURSDAY, JUNE 4, 2009

             U.S. House of Representatives,
                    Committee on Veterans' Affairs,
                                    Subcommittee on Health,
                                                    Washington, DC.

    The Subcommittee met, pursuant to notice, at 10:11 a.m., in 
Room 334, Cannon House Office Building, Hon. Michael Michaud 
[Chairman of the Subcommittee] presiding.
    Present: Representatives Michaud, Donnelly, Halvorson, 
Perriello, Brown of South Carolina, and Boozman.

             OPENING STATEMENT OF CHAIRMAN MICHAUD

    Mr. Michaud. I would like to call the Subcommittee on 
Health to order.
    I would ask the first panel to come forward, and as they 
are coming forward, I would like to thank everyone for coming 
today.
    The goal of today's hearing is to identify the gaps in 
supportive services for family caregivers. We also seek a 
better understanding of the U.S. Department of Veterans 
Affairs' (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 who provide 
informal caregiving for chronically ill, disabled, or aged 
family members or friends in any given year.
    Focusing on family caregivers of veterans, it is my 
understanding that the VA does not collect data on this 
population. Therefore, the number of family members who provide 
care for veterans is unknown.
    Additionally, studies of the general family caregiver 
population show the real adverse financial and physical toll 
that caregivers have had on these individuals.
    For example, women family caregivers are more than twice as 
likely to live in poverty. Also, family caregivers have a 
chronic health condition at twice the rate of their 
noncaregivers' counterparts and those who provide 36 or more 
hours of weekly caregiving are more likely to experience 
symptoms of depression and anxiety than noncaregivers.
    In the end, this has serious implications for our veterans. 
In order to ensure that our country's heroes receive 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 servicemembers 
transition to veteran status. In other words, supportive 
services that family caregivers may have depended upon through 
the U.S. Department of Defense (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 on the different panels we have 
today for coming. I look forward to hearing your testimony.
    [The prepared statement of Chairman Michaud appears on 
p. 32.]
    Mr. Michaud. I recognize Mr. Brown for any opening 
statement that he may have.

         OPENING STATEMENT OF HON. HENRY E. BROWN, JR.

    Mr. Brown of South Carolina. 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 our wounded, ill, 
or injured soldiers. 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 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 the Dole-Shalala Commission, and 
reports by both the VA and DoD Inspector General's Office has 
emphasized the critical role that families play in the 
successful 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 servicemembers.
    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.
    [The prepared statement of Mr. Brown appears on p. 32.]
    Mr. Michaud. Thank you, Mr. Brown.
    Do any other Subcommittee Members have an opening 
statement?
    Hearing none, I would introduce our first panel with Anna 
Frese, who is a caregiver, of the Wounded Warriors Project 
(WWP); Rene Campos, who is a Deputy Director of Government 
Relations for Military Officers Association of America (MOAA); 
and Barbara Cohoon, who is the Deputy Director of Government 
Relations for the National Military Family Association (NMFA).
    I would like to thank all three of you for coming here this 
morning. I look forward to your testimony. And we will start 
with Ms. Frese.

STATEMENTS OF ANNA FRESE, FAMILY OUTREACH COORDINATOR FOR BRAIN 
INJURY, WOUNDED WARRIOR PROJECT; COMMANDER RENE A. CAMPOS, USN 
    (RET.), DEPUTY DIRECTOR, GOVERNMENT RELATIONS, MILITARY 
OFFICERS ASSOCIATION OF AMERICA; AND BARBARA COHOON, RN, PH.D., 
GOVERNMENT RELATIONS DEPUTY DIRECTOR, NATIONAL MILITARY FAMILY 
                          ASSOCIATION

                    STATEMENT OF ANNA 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 am not talking about the first cup of coffee 
or your morning paper. I am 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 
servicemembers 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, 7 days a week, 365 days a year.
    Ironically Eric grew up as a very independent kid who was 
always one to go against the grain and challenge the norm. He 
is a huge outdoors man. He would say, Anna, I want to be an 
explorer, I want to buy a horse and travel across the United 
States just like in the old days, meeting people and seeing new 
things.
    Of course, 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 does not even like sitting next to 
strangers in the movie theater. But he had plans.
    Eric is not only my brother, but he is 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 8-month-old daughter a battery-powered pink 
Barbie Jeep big enough for a 5-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 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 do not know if he foresaw the future or was just being 
realistic about the risks of war. But after an improvised 
explosive device (IED) attack on October 2nd, 2005, Eric ending 
up fighting for his life. Eric won the battle, but today he 
lives with a traumatic and an 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 could not bear the thought of 
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 does not capture the desired life of a 28-year-old man. Dad 
does help Eric with all of his physical needs, but it is 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 has 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 4 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 wounded 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 lost 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 vagrancy, 
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, 
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 supports, 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 veteran's lifelong 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.
    When invited to comment on a 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 the 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 is no 
nationwide training standard for home health care and no 
training to meet the unique needs of young severely wounded 
warriors, particularly those with traumatic brain injury (TBI), 
post-traumatic stress disorder (PTSD), or other psychological 
health 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 would be happy to answer any 
questions you have.
    [The prepared statement of Ms. Frese appears on p. 33.]
    Mr. Michaud. Thank you very much, Ms. Frese.
    Commander Campos.

       STATEMENT OF COMMANDER RENE A. CAMPOS, USN (RET.)

    Commander Campo. 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 highlight 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 is focused not only on their medical but also 
on nonmedical needs and less focus on the preferences of 
government bureaucracies.
    They want reliable and timely communication and information 
that is 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 
bureaucracies 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 
(SOC) 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 for both medical, nonmedical benefits in 
either a DoD or 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 provided as a benefit to 
the servicemember or veteran. When the benefit is paid to the 
member, it often does not reach the nonspouse caregiver either 
because the member is unfamiliar with the payment or the 
caregiver does not 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 
nonmedical 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 that is outlined in my statement.
    In closing, MOAA believes by building a system that is 
adaptable and focused on the needs of wounded warriors 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.
    [The prepared statement of Commander Campos appears on 
p. 36.]
    Mr. Michaud. Thank you, Commander.
    Doctor Cohoon.

             STATEMENT OF BARBARA COHOON, RN, PH.D.

    Dr. 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.
    National Military Family Association asserts that behind 
every wounded servicemember and veteran is a wounded family. 
Caregivers of servicemembers 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 servicemember 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 requires 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 a wounded, ill, and injured veteran. 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 servicemember is still on active duty and continue 
throughout the transition to care under the VA. The 
compensation should recognize the types of medical and 
nonmedical 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 nonschool age 
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 
servicemembers 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 the 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 servicemembers, 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 medically retired, single 
servicemembers to be allowed the opportunity to have their 
caregivers' household goods moved as part of the medically 
retired, single servicemember's permanent change of duty 
station known as a 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 the 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 Anna, 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.
    [The prepared statement of Dr. Cohoon appears on p. 42.]
    Mr. 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 what do you think that compensation 
should be?
    Commander.
    Commander Campo. I could not 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 do not believe that one system will 
fit all, that these situations are going to change over time. 
The needs of families are going to change and the servicemember 
and the veteran.
    I look at trying to get DoD and VA to work closer together 
and recognizing that these families are getting quite a bit of 
support and immediate care at the time of injury and they are 
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 is why in terms of compensation, we want to see 
DoD, VA work together to build a package that is--because these 
folks will be going back into the DoD system and they will be 
transitioning between the systems several times throughout 
their longer-term care.
    So I cannot 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, the wounded as they transition over their life.
    Mr. Michaud. Doctor.
    Dr. Cohoon. Our Association has really proposed as far as 
two different types of payment, one as far as for the 
nonmedical care and also the other as far as actually 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 kind of determines as far as how much 
involvement that they are 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 is more involved in what you would call nonmedical 
care. They are making the doctors' appointments. They are 
making sure they are getting to where they need to go. They are 
actually maybe 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 is a lot of nonmedical care that goes on. So we 
are looking more of that as far as to be kind of a range, but 
basically kind of an amount that is given each month.
    And as far as the medical care, we are 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 
are turning them in the bed. You are actually physically giving 
them medication, those types of things.
    And there are systems in place right now where that is 
actually, you know, then compensated hourly. So we are kind of 
looking at those two different pieces.
    But also, too, as far as the care that they are giving as 
far as providing them, they also have a lost significant amount 
of money as far as walking away from their current job that 
they had. So there are two different financial impacts going on 
at the same time.
    Mr. Michaud. Thank you.
    Ms. Frese.
    Ms. Frese. Let me work with a 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 do not 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 
supports increase the risk that veterans would have to be 
institutionalized. And those costs are clearly far in excess of 
the relatively modest cost that caregiver assistance would be.
    Mr. 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 address 
it. If we were to pass legislation, what should we put in that 
legislation as the three most important components of a 
caregiver program? What would the three top priorities be?
    I know you have talked about this some during your opening 
statement. Not knowing what we will be able to get through the 
House and through the Senate, if we had to pick three 
priorities, what would they be?
    Ms. Frese.
    Ms. Frese. As we spoke about earlier, 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 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 are going to continue living 
and paying for their needs, you spend more time focusing on the 
worrying than actually--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.
    Commander Campo. As I mentioned, we are concerned about 
adding more programs or adding more layers on to already 
complicated bureaucracies. We go back to the need for and 
establishing some sort of permanent office or seamless 
transition agency of some kind.
    And, again, if it is extending the current SOC out or 
whatever, we need some good, solid oversight that does not 
change when the administration changes and when--I mean, so we 
need the continuity of the leadership and oversight of 
programs. So I think that is 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 nonmedical aspects because, again, these 
families that have been on active duty have child care. They 
have a lot of other family support, nonmedical 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, we go back to at the time of injury, 
they really need an advocate. They need somebody that is 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 is set up. I think the Quality of Life 
Foundation report I mentioned is a good starting point.
    Dr. Cohoon. First of all, this needs to start upstream, as 
I mentioned before, while they are still active duty, if you 
are going to do anything as far as the caregiver.
    One of the conversations we recently had with Secretary 
Shinseki is that if the caregiver is not taken care of 
upstream, by the time he gets them, have earned their caregiver 
status, they are either burned out or they are so frustrated 
with the system that they may stop being a caregiver. And then 
everyone loses, especially the family.
    So we want to make sure that this actually starts upstream 
while the servicemember is still on active duty.
    The other piece is that we have to remember that the 
caregiver's well-being is directly linked to the veteran's 
well-being. So if the caregiver is taken care of, then we know 
that the veteran is being taken care of and vice versa.
    And so ways in which we can help the caregiver is that we 
need to make sure and recognize that the role that they are 
playing is important and then the pieces that they are 
providing also need to be recognized. And how we go about 
recognizing that can be done in lots of different ways.
    We have 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 are 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 is a mom or dad that is doing that, they 
have other children that they are taking care of or maybe a 
father that they are also taking care of.
    So the family unit itself is a delicate balance. So 
whatever you provide the caregiver affects everybody else.
    Mr. Michaud. Thank you very much.
    Mr. Brown.
    Mr. Brown of South Carolina. I would 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's challenges such as the 
policy would create the VA include tracking caregivers and 
monitoring for quality and effectiveness of care and liability 
protection.
    Along the same lines, what are your recommendations for 
overcoming these challenges? I think you mentioned the burnout. 
How would you, I guess, distribute the caregiver's 
responsibility if we had a direct payment to the caregiver 
rather than going through the serviceperson?
    Dr. 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 
servicemembers are single, and it is the parents that are 
stepping up and taking the role. And so there becomes an issue 
as far as, 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.
    Mr. Brown of South Carolina. But if it were multiple 
caregivers, would it not be a logistical problem trying to 
generate a good number of checks?
    I am just trying to put myself in that perspective. I know 
my wife was a caregiver for my mother-in-law for the last 5 
years of her life. She was blind, and she stayed with us. My 
wife sort of assumed total responsibility for her mother, 
although there were other siblings there that probably could 
have kicked in, and we did not get any compensation for it. We 
did it out of sense of love.
    So, I would sense that that same thing would happen within 
a family of a wounded warrior. If you gave a direct payment to 
just one, how would the other family members react, where they 
have some kind of responsibility, and want to be able to 
participate in the caregiving. That would just be my concern.
    Dr. Cohoon. Well, Senator Akaka's bill actually talks about 
that, one, a caregiver is designated and that was what we had 
in our opening statement and is in our written statement that 
you basically have a caregiver that becomes designated.
    What we have 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 is going on or some handoff that is going on. In other 
words, one will come in for 4 to 5 months and then basically 
another person comes in and fills that particular role. But if 
you are 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 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 have 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.
    Mr. Brown of South Carolina. And you think the other 
members would be as enthused to be able to participate in 
caregiving if they were not compensated?
    Dr. Cohoon. I think it is difficult even for the caregivers 
themselves as far as to come up with a dollar amount as far as 
what they think the care is worth. It is very difficult as far 
as to quantify.
    If you are looking at the veteran, because the caregiver 
has been directly involved, they are more likely to take their 
medications on time, more likely as far as to go to their 
doctors on time. There is a lot of great communication that 
goes on between the doctors. So the care level goes up.
    So the veteran then does not utilize the care system as 
often and their care stays better over a long period of time. 
How do you quantify that particular dollar amount when they 
have done so much preventative care and they are not having to 
need what you would call urgent or emergent care?
    Mr. Brown of South Carolina. I applaud that idea. I think 
it is a whole lot better if the person can stay within the home 
environment where they are with people that they are 
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 the respite care. Is that working for you 
all?
    Ms. Frese. To be honest with you, sir, the programs 
translate differently on paper than they actually are 
translating in real life for the families. You know, it is 
inconsistent around the country.
    For families that live in rural communities, there may be a 
respite home health agency that may have a program, but the 
respite programs use their rules and regulations, it confines 
the veteran to their home. You know, it is not allowing--like I 
talked about, this is the 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 
are not allowed to--the respite person is not allowed to take 
them out to the community or participate in life, or their 
services are just not available because they do not deal with 
this age population.
    Mr. Brown of South Carolina. My last will be more of a 
comment than a question. In the 2010 budget request, DoD has 
proposed legislation which would provide monthly compensation 
that catastrophically wounded servicemembers to be used to 
compensate designated family caregivers.
    What is your view on this proposal? In fact, we were trying 
to get some figures that might be recommended, but we have not 
gotten those figures back yet. What are your thoughts on that?
    Commander Campo. Our concern is in terms of being focused 
again perhaps on the wrong thing. And that is perhaps maybe 
moving the servicemember out of the DoD system too quickly 
before the servicemember or the family member and to get them 
into the VA system.
    Again, it comes back to where the focus is. The focus 
should be on the servicemembers and families and what is going 
to be in their best interest in the long term.
    They are in a crisis situation really in that point in time 
and they do not even know what it is they need or what the 
future holds. And making determinations about the future in 
terms of money, where you are going to live, all those kinds of 
things, they are 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 
will 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.
    Mr. Brown of South Carolina. Thank you very much for your 
service and for your compassion.
    Mr. Michaud. Mr. Boozman.
    Mr. Boozman. Thank you, Mr. Chairman.
    I really do not have any questions. I just appreciate you 
all being here. The personal references and things are so 
helpful as we move forward with these things. So thank you very 
much for taking the time and for being here and sharing your 
thoughts on this.
    Mr. Michaud. I also want to thank Mr. Boozman, who is the 
Ranking Member of the Economic Opportunity Subcommittee, for 
all his work and efforts on that particular Subcommittee.
    Once again, I would 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 would ask the second panel to come forward. The second 
panel consists of Jill Kagan, who is Chair of the ARCH National 
Respite Coalition; Suzanne Mintz, who is the President and Co-
Founder of the National Family Caregivers Association; and Mark 
Heaney, who is President and Chief Executive Officer of Addus 
Health Care, Inc., and National Association for Home and 
Hospice Care.
    I would like to thank our three panelists on the second 
panel for coming forward today to give your testimony before 
the Subcommittee on Health. I look forward to hearing what you 
have to say and have an open dialog.
    And we will start off with Ms. Kagan.

  STATEMENTS OF JILL KAGAN, MPH, CHAIR, ARCH NATIONAL RESPITE 
COALITION; SUZANNE G. MINTZ, PRESIDENT AND CO-FOUNDER, NATIONAL 
 FAMILY CAREGIVERS ASSOCIATION; AND MARK S. HEANEY, PRESIDENT 
AND CHIEF EXECUTIVE OFFICER, ADDUS HEALTHCARE, INC., PALATINE, 
  IL, AND, HOME CARE AIDE SECTION REPRESENTATIVE, AND MEMBER, 
  BOARD OF DIRECTORS, NATIONAL ASSOCIATION FOR HOME CARE AND 
                         HOSPICE, INC.

                  STATEMENT OF JILL KAGAN, MPH

    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 am 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 and 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 do not know the specific number of 
family caregivers of veterans, we do know that out of an 
estimated 26 million veterans, over 9 million are 65 and older 
and 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 
are 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 of 
veterans is high 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 are 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 caregivers' 
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 is very 
hard to go out and do something else if you are 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 a 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 is also restrictive eligibility criteria in many 
Federal and State programs that preclude many families from 
receiving services, especially for those in the age group 18 to 
60. There are almost no programs for respite for which these 
families qualify.
    And many would have conditions such as amyotrophic lateral 
sclerosis (ALS), multiple sclerosis (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 and 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 is 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 is 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 population, they do face these 
additional special barriers and we have to find ways to 
specifically address them.
    The VA also requires copayments for nonexempt 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 copayments ranging from $15 per 
day for noninstitutional 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 do not have a specific disability 
or fall into a specific age group or have a specific income, 
you do not qualify.
    All of these piecemeal respite funding streams provide a 
very critical foundation on which to build systems of respite 
care, but they do not 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 Life Span 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. The 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 to 
the----
    Mr. Michaud. You are 3 minutes and 45 seconds over and we 
are going to have votes shortly, so if you could please 
summarize.
    Ms. Kagan. I will go right to my recommendations.
    Recently Congress did enact ``The Life Span Respite Care 
Act,'' which would expand those systems of care to hopefully 
eventually all 50 States and that funding is becoming available 
this week through the Administration on Aging (AoA). 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 Life Span Respite programs, urging the VA to 
collaborate with State Life Span 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 Life Span 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 is most beneficial for them and the person 
they are caring for.
    Also, it should be investigated if the VA has a possibility 
to reduce or eliminate some of the mandatory copayments for 
respite and, of course, ultimately to link these veterans 
directly and their families to existing Life Span 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.
    [The prepared statement of Ms. Kagan appears on p. 49.]
    Mr. Michaud. Thank you.
    Ms. Mintz.

                 STATEMENT OF SUZANNE G. 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 Caregivers 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 and concerns of America's family 
caregivers.
    I am not a veteran nor is my husband, Steven, 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 and 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 do not 
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 should not 
have to figure out which benefits they are eligible for nor 
should they have to go through the process of directly applying 
for them. Their lives are hard enough now.
    And that is 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 Benefits 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 nonmedical 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 
the families to make their own decisions about how they want to 
live their lives.
    The Bladder and 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 is one thing to have 
programs. It is another thing to implement them well.
    I think it is 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 and in many cases then be denied.
    And we know that this is not just the situation here. No 
matter how good the family programs are, they are irrelevant if 
vets cannot access them and if they cannot 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.
    [The prepared statement of Ms. Mintz appears on p. 58.]
    Mr. Michaud. Thank you.
    Mr. Heaney.

                  STATEMENT OF MARK S. HEANEY

    Mr. Heaney. Thank you, Mr. Chairman, and thank you for 
allowing me to testify.
    My name is Mark Heaney. I am President and Chief Executive 
Officer of Addus Health care. We are 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 cannot think of a place I would rather be 
today and I am 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 purpose of this testimony, I define a family 
caregiver as both the family member who is the primary care 
person, the most responsible for continuing care for the at-
risk veteran, as well as the larger family, all families 
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 aid 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 indicates that 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 care delivery, of a care delivery 
system must be to assure that 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.
    [The prepared statement of Mr. Heaney appears on p. 62.]
    Mr. Michaud. Thank you very much.
    I have no questions, but I will be submitting questions in 
writing. It is my understanding Mr. Brown has none.
    Mrs. Halvorson.
    Mrs. Halvorson. Thank you, Mr. Chairman.
    And thank you, panelists. It is good to see all of you.
    I just have one quick one. My district in Illinois is a mix 
of everything, but I am specifically concerned about my rural 
areas.
    How available is respite care in the rural areas and what 
are we doing for the families who cannot get it? And I do not 
know if there is any specific one of you that wants to answer 
that.
    I do not 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 ``Life Span Respite Care Act,'' which 
States are now applying for currently.
    There is also an Illinois Respite Coalition that is very 
active in your State and they are doing a lot to try to recruit 
and train providers in those areas and provide transportation 
as well. That is a critical issue. It is one thing to have a 
program, but if you cannot get to it, that is another 
tremendous barrier.
    But we need to make sure that even in those rural areas 
that people are thinking outside of the box on how to provide 
those services in a way that uses what is already there. It 
does not have to necessarily be an expensive effort.
    Ms. Mintz. Rural areas are challenges whether it is 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 is a program called Lots of Helping Hands which is 
essentially a Web site 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 is bringing meals on 
Tuesdays or driving the kids, you know, to church on Sunday 
morning, it becomes micro tasks. It is 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 is certainly a great place for VistA type 
programs.
    Mrs. Halvorson. Addus does a great job in Illinois.
    Mr. Heaney. Thank you.
    Mrs. Halvorson. And, Mr. Heaney, thank you.
    Mr. Heaney. 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 are 
very grateful for that.
    I learned something today. I have 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, the word respite.
    Actually, my answer is that, and actually it is Ms. Kagan's 
testimony that made me realize it, the answer I will give you 
is that in the rural communities, we actually were able to find 
caregivers. Wages are going up. Appreciation for the service is 
increasing. We are able to find caregivers and we are able to 
screen them. And I think we just have to be diligent.
    But the respite service is not promoted. I do not think it 
is known and, actually worse, I think sometimes it is seen as 
nonessential.
    In listening to the young lady who spoke initially and to 
Ms. Kagan's testimony and to Ms. Mintz's testimony, I realized 
how critical that service is for what is a voluntary caregiver.
    By the way, everybody is working. It is dual-income 
households, right? And I have learned something today and I 
will use that in my policy work.
    Mrs. Halvorson. Thank you. Thank you all very much.
    Ms. Mintz. Thank you.
    Mr. Michaud. Once again, I would like to thank our three 
panelists for your testimony this morning. We 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.
    Mr. Michaud. I would ask the third panel to now come 
forward: Dr. Agarwal, Chief Patient Care Services Officer with 
the VHA; Edward Walker, who is the Acting Assistant Secretary 
of Aging, in the U.S. Department of Health and Human Services 
(HHS); and Noel Koch, who is the Deputy Under Secretary 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.

  STATEMENTS OF MADHULIKA AGARWAL, M.D., MPH, CHIEF OFFICER, 
  PATIENT CARE SERVICES, VETERANS HEALTH ADMINISTRATION, U.S. 
 DEPARTMENT OF VETERANS AFFAIRS; ACCOMPANIED BY LUCILLE BECK, 
  PH.D., CHIEF CONSULTANT, REHABILITATION SERVICES, VETERANS 
  HEALTH ADMINISTRATION, U.S. DEPARTMENT OF VETERANS AFFAIRS; 
 THOMAS E. EDES, MS, DIRECTOR, HOME AND COMMUNITY-BASED CARE, 
    OFFICE OF GERIATRICS AND EXTENDED CARE, VETERANS HEALTH 
ADMINISTRATION, U.S. DEPARTMENT OF VETERANS AFFAIRS; THOMAS J. 
  KNIFFEN, CHIEF, REGULATIONS, STAFF COMPENSATION AND PENSION 
 SERVICE, VETERANS BENEFITS ADMINISTRATION, U.S. DEPARTMENT OF 
   VETERANS; EDWIN L. WALKER, ACTING ASSISTANT SECRETARY FOR 
 AGING, ADMINISTRATION ON AGING, U.S. DEPARTMENT OF HEALTH AND 
   HUMAN SERVICES; AND NOEL KOCH, DEPUTY UNDER SECRETARY OF 
  DEFENSE, OFFICE OF TRANSITION POLICY AND CARE COORDINATION, 
                   U.S. DEPARTMENT OF DEFENSE

           STATEMENT OF MADHULIKA AGARWAL, M.D., MPH

    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 Home 
and 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 Home and 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 maintain 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 homemaker home health aid 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 Aid and Attendance 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 nonveterans on a humanitarian basis 
in an emergency situation. But we are required by law to charge 
for 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 a 
different support mechanism than veterans with quadriplegia or 
those with traumatic brain injury. Maintaining programs 
tailored for different populations ensures that VA offers 
optimal care to the veterans.
    In conclusion, Mr. Chairman, caregivers fulfill a wider 
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.
    [The prepared statement of Dr. Agarwal appears on p. 66.]
    Mr. Michaud. Thank you.
    Mr. Walker.

                  STATEMENT OF EDWIN L. WALKER

    Mr. Walker. Mr. Chairman and distinguished Members of the 
Subcommittee, 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 have heard from the distinguished preceding panel about 
the diverse characteristics and complex needs of caregivers. I 
would 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 Caregivers 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 
and 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 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 loved 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 on Aging has 
just made available an opportunity for States to apply for 
funding for Lifespan Respite Care 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. 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 collaboration, 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.
    In FY 2009, we have funded 20 States, 10 of which provide 
veterans' directed services. And I am 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 is 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 am 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 would be 
happy to answer any questions you or Members of the Committee 
may have.
    [The prepared statement of Mr. Walker appears on p. 71.]
    Mr. Michaud. Thank you, Mr. Walker.
    Mr. Koch.

                     STATEMENT OF NOEL KOCH

    Mr. Koch. Mr. Chairman, Congressman Brown, distinguished 
Members of the Subcommittee, I have a written statement which I 
would like to submit for the record. And I will just make a few 
brief remarks.
    Mr. Michaud. Without objection, so ordered.
    Mr. Koch. Thank you.
    Mr. Chairman, first of all, I want to say 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 is not 
sufficient, there is a recent completion of a report done by 
the Center for Naval Analysis, which if you do not have that, 
we would be happy to provide it to the Committee.
    But it addresses 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 is an 
effort that is entrained.
    The overall function of my office, which is newly created, 
I must say, Mr. Chairman, for 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 of a wounded servicemember either back into active 
service or if it is going to be necessary for them to 
transition into a status as a veteran to make that run as 
smoothly as we possibly can. And I think we are 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 have 
gone through this, the information that we provide, I am not 
satisfied that it is easily accessible. We are finding a great 
deal of duplication, of redundancy.
    And so one of the things we will 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 Web sites. And so that is one of the 
issues that we are trying to address now.
    Finally, we will be delivering within a little more than a 
month, it is in coordination now, a 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 
initiatives which are entrained. Some are actively functioning 
now, but they address in to 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.
    [The prepared statement of Mr. Koch appears on p. 75.]
    Mr. Michaud. Thank you very much.
    And thank you to the other two panelists for your excellent 
testimony this morning.
    If you could provide a copy of that report to the 
Committee, I would appreciate it.
    [The Center for Naval Analysis report, entitled, ``Economic 
Impact on Caregivers of the Seriously Wounded, Ill, and 
Injured,'' dated April 2009, by Eric Christensen, Candace Hill, 
Pat Netzer, DeAnn Farr, Elizabeth Schaefer, and Joyce McMahon, 
was received by the Subcommittee and will be retained in the 
Committee files.]
    Mr. Koch. Yes, sir.
    Mr. Michaud. Thank you.
    Mr. Brown.
    Mr. Brown of South Carolina. Thank you, Dr. Koch, for being 
here this morning.
    And we had some questions. I guess you heard the previous 
panel. For 2010, DoD has proposed legislation which would 
provide monthly compensation to catastrophically wounded 
servicemembers 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 am sorry. I 
am going to have to ask you to repeat the question. And I may 
not be familiar with the subject sufficiently that I would have 
to----
    Mr. Brown of South Carolina. Okay. Well, I will----
    Mr. Koch [continuing]. Address it here without responding 
in writing.
    Mr. Brown of South Carolina. Okay. Well, we can submit it 
in writing and let you give me an answer back would be fine, 
sir.
    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.
    Mr. Brown of South Carolina. Do you have an opinion on 
that?
    Mr. Koch. Do I have an opinion on their concerns about our 
care for wounded veterans?
    Mr. Brown of South Carolina. No. The method and 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 is a point beyond which we 
cannot control how families function.
    So in some cases, the concern is the money goes to the 
family and the family spends it and it is not spent on care. It 
is not spent on the purpose that it is being provided for.
    Suggestions that we provided directly to the servicemember 
raised some of the same concerns. So there is a point beyond 
which we cannot manage the way human beings conduct their 
lives.
    And, I mean, everybody has a suggestion and usually that 
suggestion is a function of some personal experience or 
something that they are familiar with that has worked out 
badly, money has been wasted, care has not been provided and so 
forth.
    And it is difficult to come up with a solution to that 
because that solution is going to have second-order 
consequences that are going to have some disaffecting role for 
somebody else.
    Mr. Brown of South Carolina. And I guess that is the reason 
we have hearings, so we can get, I guess, the issues on both 
sides.
    Dr. Agarwal, is that correct? Okay. You 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 have 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 Care Management 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 and helping us with navigating between the 
VA, the DoD, as well as with 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 HealtheVet.
    Mr. Brown of South Carolina. So you basically have a Web 
site which has these services that are available?
    Dr. Agarwal. We are currently working on that.
    Mr. Brown of South Carolina. And how to get those 
resources?
    Dr. Agarwal. We are working on it, sir. It is in the 
development phase.
    Mr. Brown of South Carolina. 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 is difficult to meet those or connect those, you 
know, resources. But thank you.
    Thank the rest of the panel, too, for being a part of this 
process.
    Mr. Michaud. Mrs. Halvorson.
    Mrs. 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 are younger. They have probably got different 
problems. What are the challenges that you are 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 array 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 families' 
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 
supports we can provide.
    I had just previously mentioned some of the things that we 
are currently doing, but I am going to turn it over to Dr. Beck 
to give some specific examples.
    Ms. 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, 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 are 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.
    Mr. Michaud. Thank you very much.
    They just called for votes, so you are saved by the bell.
    I do have several questions but in respect for the panel's 
time and others in the audience, since we have several votes 
coming up, I will submit those questions in writing.
    So I want to thank this panel and the previous two panels 
for your testimony this morning and look forward to working 
with you as we move forward on this very important issue as it 
relates to caregivers and our veterans. So thank you very much 
for coming.
    The hearing is now adjourned.
    [Whereupon, at 11:45 a.m., the Subcommittee was adjourned.]

                            A P P E N D I X

                              ----------                              

        Prepared Statement of Hon. Michael H. Michaud, Chairman,
                         Subcommittee on Health
    The Subcommittee on Health will now come to order. I would like to 
thank everyone for coming today. The goal of today's hearing is to 
identify the gaps in supportive 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 back-bone of the U.S. long-term 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 number of family members who provide care for veterans 
is unknown.
    Additionally, studies of the general family caregiver population 
show the real adverse financial and physical toll that caregiving has 
on these individuals. For example, women family caregivers are more 
than twice as likely to live in poverty. Also, family caregivers report 
having a chronic health condition at twice the rate of their non-
caregiver 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 heroes receive 
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 realities of being a caregiver.
    Clearly, the family caregivers of our veterans have made great 
sacrifices. I have heard from family members who gave up their jobs, 
delayed their schooling, or made other significant life-changing 
sacrifices in order to be by their loved one's side. This raises 
questions about the VA's current efforts to help these family 
caregivers and whether there are sufficient supportive services in 
place. Additionally, there are concerns about the lack of coordination 
of caregiver benefits when the servicemember transitions to veteran 
status. In other words, supportive services that family caregivers may 
have depended on 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.

                                 
   Prepared Statement of Hon. Henry E. Brown, Jr., Ranking Republican
                     Member, Subcommittee on Health
    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 put their lives on hold to care for their injured 
loved one.
    Family caregivers are more often than not at the core of what 
sustains the treatment and recovery of a wounded, ill, or injured 
soldier. Their commitment is strong and heartfelt. Yet, it can be 
enormously challenging, especially in a prolonged recovery. There are 
many struggles that family members may face when assuming this role 
including: job absences, lost income, travel and relocation costs, 
child care concerns, exhaustion, and emotional or psychological stress.
    The President's Commission on Care for America's Returning Wounded 
Warriors, often called the often called the Dole-Shalala Commission, 
and reports by both the Department of Veterans Affairs (VA) and 
Department of Defense (DoD) Inspector General Offices have emphasized 
the critical role that families play in the successful 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 family 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 and 
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 role 
of family caregivers.
    I thank the Chairman for holding this hearing and yield back.

                                 
Prepared Statement of Anna Frese Family Outreach Coordinator for Brain 
                    Injury, Wounded Warrior Project
    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 and the gaps 
in supportive services available through the VA. Mr. Chairman, we're 
particularly grateful to you for introducing H.R. 2342, the Wounded 
Warrior Project Family Caregiver Act, a bill that would provide the 
critical supportive services family caregivers need.
    Let me provide some context for this statement by telling you about 
my brother, Eric, whose life was forever changed by an IED attack in 
October 2005. Eric grew up as a very independent kind and shy young man 
with big dreams. Today he lives with a traumatic and anoxic brain 
injury.
    Eric won the battle for his life, but he faces a new battle every 
day as he works to regain the ability to walk, talk, eat and drink. 
Eric 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.
    The only option originally proposed for Eric's future was nursing 
home care. But our family could not bear the thought of sending Eric to 
a nursing facility. So he came home.
    Eric and Dad are a Team now. Eric requires assistance with all of 
his activities of daily living (ADL's), but having one's daily living 
needs met does not capture the desired life of a 28 year old man. The 
physical assistance required to perform ADL's and administration of 
medicine are addressed throughout the day, but it is the way that Dad 
as a parent cares for Eric's spirit by supporting him in reaching his 
goals, creating new memories, and focusing on future dreams and 
adventures that has been the driving force behind Eric's progress 
toward recovery. Eric relies on Dad to assist him in 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 and has used up his retirement funds and savings, no 
longer has health insurance and has not contributed to Social Security 
in almost 4 years. Even though his future has been drastically altered, 
he tells me often, ``Eric would do it for me.''
    Clearly, the casualties of war extend far beyond the battlefield.

Needs of Family Caregivers of Wounded Warriors

    While many wounded warriors substantially recover from their wounds 
and are able to live independently, some like Eric have sustained such 
profound injuries that they will likely need ongoing personal care and 
assistance for a very long time. These individuals usually want to 
return to, or remain in their homes, and strongly resist being 
institutionalized.
    Confronted by severe, life-threatening injuries sustained by a 
spouse, fiance, child or other loved one, families must make sudden 
life-altering changes. Like my father, family members may be forced to 
take extended leaves of absence or permanently leave their jobs to be 
at the servicemember's bedside, beginning a journey of what may become 
years-long or even a lifetime of committed care. These are acts of love 
and self-sacrifice. But as Eric's sister and friend of many, many 
caregivers across the country, I can tell you that, 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.
    As you know, our wounded warriors are leaving hospitals and 
rehabilitation facilities with grievous, life-changing injuries that 
include severe burns, amputations, spinal cord injury, blindness, and 
brain injuries. Many have, of course, sustained multiple injuries and 
may also be experiencing co-occurring psychological problems, including 
PTSD and depression.
    Formerly independent individuals with such severe injuries now 
routinely require assistance with the most basic, intimate activities 
of daily living. Some have retained or regained the ability to carry 
out those activities, but brain injuries may have impaired their 
cognition, judgment, memory, emotional stability, or other capacity to 
function safely even inside the home without help or accompaniment of 
another.
    In many cases, the wounded warrior requires personal assistance 
around the clock and may need specialized, daily care. At present, few 
family caregivers receive standardized and on-going training, and they 
have no formal support network. Many have no access to health care, 
respite care, counseling or a way to replace lost income. Those who 
leave the workforce to become caregivers typically lose not only income 
but health care coverage, savings, a retirement plan, and benefits.
    Each veteran's situation and each family's experience is unique. 
But each family, and ultimately each wounded warrior, faces a common 
danger. That danger is that, over time, caregiving without reasonable 
supports can become unsustainable. Such a breakdown can take many 
forms--utter exhaustion, incapacitating illness, personal bankruptcy, 
nervous breakdown, or severe interpersonal strain that in some 
instances has led to divorce. In such cases, there may be no other 
alternative for the veteran than institutional care. Such outcomes 
would not only be tragic for wounded warriors and their families, but 
could become enormously costly to the VA health care system which will 
likely be called upon to care for them.
    Through my own family's experience, and that of the many, many 
families with whom the Wounded Warrior Project works, we understand not 
only how fragile family caregiving can be, but what is needed to help 
sustain it and avoid its breakdown. In our experience, certain 
fundamental needs must be met to sustain family caregiving. These 
include initial caregiver training and instruction on meeting the 
veteran's personal-care needs, and provision of basic support services. 
Those needed supports are----

          An ongoing source of training, information and 
        assistance to meet routine, specialized, and emergency needs;
          Access to counseling and mental health services;
          Respite care;
          Provision of needed medical care; and
          Some modest level of economic support.

    While some families may not need the full array of services, my 
father's situation certainly illustrates the importance of those 
supports.
    Let me share two other examples from among the many with whom I've 
worked. In late 2005, one of our ``alumni'' was blinded and sustained 
severe traumatic brain injury as a result of an IED explosion in Iraq. 
His wife was forced to leave her teaching job permanently to care for 
him. In the 3 years she has been his full-time caregiver, she has 
received no training of any kind, no supplemental income, and has 
health care coverage only because she is covered by TRICARE. Although 
she lives some 90 miles from the nearest VA facility, she had not been 
made aware of the availability of VA respite care.
    The mother of another wounded warrior lost her job after 2 months 
of caring for her son, who had been severely injured in April 2003, and 
requires full-time care. She has some health care coverage through her 
husband's health care program, but they pay significant premiums for 
that care. They have gone from a two-income family to a one-income 
family. She has had a heart biopsy and heart catheterization done 
recently and stated plainly that along with the normal worry and stress 
that caregiving entails, that stress is compounded by the fact that 
there is a constant concern about their finances and health care 
coverage.

The Well-Established Research on Family Caregivers

    While I can share the experience of many, many more families of 
wounded warriors, the needs I've described are not simply anecdotal. 
The impact of long-term caregiving on the families of severely disabled 
individuals in the general population has been extensively studied. 
These findings underscore the need wounded warrior family caregivers 
have for the array of services provided for in H.R. 2342.
    Studies indicate, for example, that proper caregiver training can 
reduce the chances of injury for both the caregiver and the recipient. 
They show further that well-trained caregivers are less likely to use 
costly, formal supports.\1\
---------------------------------------------------------------------------
    \1\ G. Smith, P. Doty and J. O'Keefe, ``Supporting Informal 
Caregiving,'' in Understanding Medicaid Home and Community Services: A 
Primer (Washington, DC: U.S. Department of Health and Human Services, 
Office of the Assistant Secretary for Planning and Evaluation, 2000). 
As referenced in The Older Americans Act National Family Caregiver 
Support Program (Title III-E and Title VI-C): Compassion in Action 
(Washington, DC: U.S. Department of Health and Human Services, 
Administration on Aging, 2004), 7.
---------------------------------------------------------------------------
    Highlighting the need for access to counseling and other health 
care services, the studies also show that family caregivers experience 
an increased likelihood of stress,\2\ depression,\3\ and mortality \4\ 
as compared to their non-caregiving peers. Those who provide care 36 
hours or more per week are more likely than non-caregivers to 
experience depression and anxiety. Women who provide that level of care 
to a disabled spouse are six times more likely to experience symptoms 
of depression and anxiety. \5\ Studies also suggest that with each 
incremental increase in assistance with activities of daily living 
(ADL's), spousal caregivers experience a greater risk for serious 
illness.\6\ Caregivers report poorer levels of perceived health,\7\ 
more chronic illnesses,\8\ and poorer immune responses to viral 
changes.\9\
---------------------------------------------------------------------------
    \2\ Pinquart and Silvia Sorensen, ``Differences Between Caregivers 
and Noncaregivers in Psychological Health and Physical Health: A Meta-
Analysis,'' Psychology and Aging 18, no. 2 (2003): 254.
    \3\ Nadine Marks, and James Lambert, ``Transitions to Caregiving, 
Gender, and Psychological Well-Being: A Prospective U.S. National 
Study,'' February 1999, working paper no. 82, Center for Demography and 
Ecology, University of Wisconsin-Madison, pg. 15.
    \4\ Richard Schultz and Scott Beach, ``Caregiving as a Risk Factor 
for Mortality,'' Journal of the American Medical Association 282, no. 
23 (1999): 2218.
    \5\ C. Cannuscio et al, ``Reverberation of Family Illness: A 
Longitudinal Assessment of Informal Caregiver and Mental Health Status 
in the Nurses' Health Study,'' American Journal of Public Health 98, 
no. 8 (2002): 305-1311.
    \6\ W. S. Shaw, T. L. Patterson, S. J. Semple, S. Ho, M. R. Irwin, 
R. L. Haugler et al., ``Longitudinal Analysis of Multiple Indicators of 
Health Decline among Spousal Caregivers,'' Annals of Behavioral 
Medicine 19 (1997): 105.
    \7\ R. Schulz, A. T. O'Brien, J. Bookwala and K. Fleissner, 
``Psychiatric and Physical Morbidity Effects of Dementia Caregiving: 
Prevalence, Correlates, and Causes,'' Gerontologist 35 (1995):771-791, 
as referenced in Thomas Patterson and Igor Grant, ``Interventions for 
Caregiving in Dementia: Physical Outcomes,'' Current Opinion in 
Psychiatry 16 (2003): 629-630.
    \8\ A. Pruchno and S. L. Potashnik, ``Caregiving Spouses: Physical 
and Mental Health in Perspective,'' Journal of American Geriatric 
Society 37 (1989): 697-705, as referenced in Thomas Patterson and Igor 
Grant, ``Interventions for Caregiving in Dementia: Physical Outcomes,'' 
Current Opinion in Psychiatry 16 (2003): 630.
    \9\ R. Glaser, J. K. Kiecolt-Glaser, ``Chronic Stress Modulates the 
Virus-Specific Immune Response to Latent Herpes Simplex Virus Type I,'' 
Annals of Behavioral Medicine 19 (1997): 78-82, as referenced in Thomas 
Patterson and Igor Grant, ``Interventions for Caregiving in Dementia: 
Physical Outcomes,'' Current Opinion in Psychiatry 16 (2003): 630.
---------------------------------------------------------------------------
    Finally, economic issues associated with caregiving cannot be 
ignored. The literature suggests that informal (unpaid) caregiving is 
incompatible with full-time employment.\10\ Research shows that even 
small reductions in work hours to provide unpaid care can result in 
significant lost wages and a reduction in the caregiver's future 
pensions and retirement savings.\11\ Also, a reduction in long-term 
wages will reduce future Social Security benefits.
---------------------------------------------------------------------------
    \10\ R. W. Johnson and A.T. Lo Sasso, The Trade-Off between Hours 
of Paid Employment and Time Assistance to Elderly Parents at Midlife 
(Washington, DC: The Urban Institute, 2000), 25.
    \11\ Ibid., 27-28.

---------------------------------------------------------------------------
Gaps in VA's Support for Needs of Family Caregivers

    The VA has the capacity to provide for the full array of supports 
that a caregiver would need. But the Department has no systematic 
Family Caregiver Program. It has mounted some pilot programs. But 
overall, our experience is that very little institutional attention is 
being paid to family caregivers even though they are a vital link in 
the veteran's lifelong rehabilitation process. Some VA facilities 
provide some of the services family caregivers need--notably, respite 
care, and some education and counseling for family members. But family 
caregivers need more than piecemeal services and support. Moreover, 
provision of those limited support services is highly variable, and, to 
the extent that they exist at all, these support services are simply 
not integrated in a comprehensive manner to support family caregivers. 
Given the handful of generally limited and inconsistent caregiver 
support services now available, families are coping largely on their 
own.
    When invited to express support for legislation to establish a 
program such as that proposed in H.R. 2342, VA has been surprisingly 
resistant, and asserted its preference for contracting for home health 
services. But many of the families of our newest generation of wounded 
warriors consider such services (even assuming they are available 
locally and could meet the often complex needs of the veteran) a poor 
alternative to the care provided by a devoted parent, sibling, spouse, 
or friend. Local services vary greatly in both quality and quantity. 
(When Eric was assigned a home health care nurse during his transition 
home, the family found the agency's involvement to be more troublesome 
than helpful. Due to the large amount of patients assigned to each 
staff, there immediately was an issue with showing up considerably late 
or not at all. We also found the agency staff to be uncomfortable in 
meeting Eric's specialized needs.) There is no nationwide training 
standard and no cultural training for local agencies addressing the 
unique needs of young, severely wounded veterans, particularly those 
with TBI, PTSD or other psychological health issues. Additionally, for 
family caregivers who need financial support to enable them to care for 
their wounded loved ones, VA has no answer other than to suggest 
vaguely that they might seek employment with a local home-health 
agency. In short, the VA offers an inadequate answer for those of us 
who have dedicated ourselves to providing what we believe is the best 
care available--that provided by a loving family.
    Sending young men and women into battle has its costs; bringing our 
severely injured veterans home also has its costs. Families provide 
home-care out of love. But given the profound challenges that family 
caregivers face and VA's failure to respond effectively to those 
challenges, we applaud your development and introduction of H.R. 2342, 
and look forward enthusiastically to working with you and the Committee 
to advance this critically important initiative.
    In closing, let me explain that I have shared our family's story 
not to call attention to our situation but to speak for the many other 
wounded warriors whose futures will be brighter if their families are 
provided support to assist them in continuing the dedicated, loving 
vigil of caregiving.
    That concludes my testimony; I would be happy to answer any 
questions you may have.

                                 
   Prepared Statement of Commander Rene A. Campos, USN (Ret.) Deputy 
   Director, Government Relations, Military Officers Association of 
                                America
                           EXECUTIVE SUMMARY

CAREGIVER/FAMILY NEEDS:

DoD-VA Seamless System of Care and Support

          Care and support that is focused on both active duty 
        and reserve servicemembers and veterans that are wounded, ill 
        or injured and their family/caregivers.
          Single, joint, one-stop Departments of Veterans 
        Affairs (VA) and Defense (DoD) management system of care and 
        support. Caregivers/families desire a seamless and transparent 
        transition experience between the two systems.
          Standardization/consolidation of systems that produce 
        high quality, comprehensive, responsive, and accessible medical 
        and non-medical services.
          Continuum of care and support that is consistent, 
        reliable, easy to navigate, and is proactive, anticipating 
        needs over a lifetime.

                  ``I had to navigate everything. The lack of 
                communication and coordination are still the biggest 
                challenges. Much can be done to streamline and navigate 
                the system to help improve the quality of life for 
                families.'' (Mother of Navy son injured in 2007)

Communication & Information

          Reliable, accurate, and personalized/customized 
        information tailored to individual/family situation.
          Timing, amount, format, frequency, and delivery of 
        information is crucial.
          Bi-directional sharing of information among providers 
        and staff, and between providers, staff and families.

                  ``I don't have the time to research how to get help, 
                how to provide the best therapy for my son_I need one 
                place to go to_my toolbox_with resources for whatever I 
                or my son need. Take away the responsibility of 
                researching the issues when someone out there already 
                knows the answers. Make it easier for me to find 
                answers.'' (Parent Caregiver, 2009 Quality of Life 
                Foundation Report, Wounded Warrior Family Care, 
                Establishing a Model of Family Support)

Advocacy & Assistance Coordination

          One VA-DoD care coordinator/manager that is assigned 
        at the time of injury and remains with family/caregiver 
        providing continuity of support to the family long-term if 
        needed.
          Assistance in navigating and coordinating medical 
        care, benefits, support services, and available resources 
        within and outside the VA and DoD.
          Standard VA-DoD caregiver training, certification, 
        and compensation programs for full-time family caregivers, 
        including reimbursement of all expenses associated with 
        caregiving and recognition of caregivers' earnings forfeiture; 
        compensation should be paid directly to the caregiver and not 
        be considered a servicemember-veteran benefit.

                  ``Right now I'm fighting a battle. I'm going to [a VA 
                facility] with my son; he's still an inpatient. I'm 
                going by myself. I have a mortgage, bills. I quit my 
                job to take care of my baby, my only son. I'm coming 
                from another States . . . I can't find a job here 
                because I'm always in the hospital.'' (Parent 
                caregiver, 2008 DACOWITS report)

    Chairman Michaud, Ranking Member Brown, and Distinguished Members 
of the Subcommittee, on behalf of the 370,000 members of the Military 
Officers Association of America (MOAA), I am grateful for the 
opportunity to present testimony on the issues facing caregivers of 
veterans and to offer recommendations to better meet their needs, and 
those of their family.
    MOAA does not receive any grants or contracts from the Federal 
Government.
    MOAA commends the Departments of Veterans Affairs (VA) and Defense 
(DoD) for the significant progress made in transforming health care and 
support to meet the needs of our wounded warriors and their families. 
There has been much emphasis on trauma care, acute rehabilitation, and 
basic or short-term rehabilitation during this transformation. It is 
now time to take a longer view of how we will care for our most 
severely wounded, injured or ill, including strengthening support to 
caregivers and family members over the life-cycle of the member.
                        FINDINGS OF KEY STUDIES
    2009 Quality of Life Foundation Report, ``Wounded Warrior Family 
Care, Establishing a Model of Family Support'' & Working Group Meeting, 
May 18-19, 2009 on Community Resource Coordination Program_Identified 
underserved/unmet needs for families of the severely injured, offered 
recommendations to address shortfalls, and provided a model of support 
and nationwide private-sector community resource coordinator program 
concept for transitioning to long-term, if not a lifetime of intensive 
home-based family care.

          Key Findings

                  Not currently provided by VA or DoD:

                          Replacement for family caregiver loss 
                        of income;
                          Replacement for family caregiver loss 
                        of medical, dental and life insurance;
                          Private sector community resource 
                        coordinator for unmet/underserved needs;
                          Home visit to prepare home and family 
                        for veteran's arrival; and
                          Long-term care tailored to the 
                        veteran's age, medical, and rehabilitation 
                        needs.

                  Currently provided, but improvements needed:

                          No in-person support/assistance 
                        officer or notebook to provide guidance at time 
                        of injury;
                          Pre-paid lodging/meals, child/
                        dependent care, legal assistance, respite care, 
                        transportation assistance, and reimbursement 
                        for out-of-pocket expenses;
                          Preparation in DoD pay and benefit 
                        changes and assistance obtaining VA benefits, 
                        compensation, and grants;
                          Communications support;
                          Education regarding treatment 
                        options;
                          One overall/single point of contact--
                        lifelong case manager;
                          Emotional/mental health support;
                          Community integration plan/local 
                        connections and continued rehabilitation 
                        therapy for veteran;
                          Medical appointment, transportation 
                        assistance/reimbursement; and
                          Caregiver vocational assistance--
                        biggest issue is compensation for caregivers--
                        VA has some programs, but more are needed via 
                        legislation.

  Recommendations

                  Collaborative effort needed at the Federal, 
                State, private sector, and community levels, using a 
                national Community Resource Coordinator Program model 
                of support.
                  VA, DoD and Congress need to continue to 
                press for legislative changes and increased funding for 
                caregiver/family support/programs.
                  Non-profits should collaborate to identify 
                best-practices in delivery of community-based services 
                to meet needs.

    April 2009 CNA Study, ``Economic Impact on Caregivers of the 
Seriously Wounded, Ill, and Injured''_The study was done by the 
Assistant Secretary of the Air Force for Manpower and Reserve Affairs, 
who was tasked to look at the economic impact on caregivers of 
seriously wounded, ill or injured by the Joint DoD-VA Senior Oversight 
Committee (SOC), under the area of responsibility, Line of Action 8 
(Personnel, Pay & Financial Support).

Findings

                  Caregivers provide benefits in overall 
                patient recovery.
                  Injury has an immediate economic impact on 
                servicemembers and family member caregivers

                          Servicemembers' pay and tax status 
                        change as they move from deployment to 
                        hospitalization to outpatient status to 
                        eventual return to duty or transition to VA.
                          Financial challenges on caregivers 
                        begin to mount as they leave work and 
                        educational pursuits to be a caregiver.

Survey Results

                  57 percent of caregivers provided at least 10 
                hours a week.
                  3 out of every four caregivers had to quit or 
                take time off from work or school.
                  11 percent of caregivers dealt with housing/
                location changes.
                  1/3 of caregivers had to make new child care 
                arrangements.
                  37 percent of caregivers had unmet financial 
                obligations (positively correlated with the number of 
                hours of assistance the caregiver provides each week).
                  Annual average number of very seriously 
                injured/seriously [VSI/SI]
  
            VSI/SI servicemembers                           = 720
           VSI servicemembers only                         = 170         Duration of caregiver support           Average                                   = 19 months
           Survey respondents expecting to                 = 43%
           give long-term care
  
 Average economic loss by caregivers (covers lost earnings/benefits only)
  
            19 months of care per caregiver             = $60,300
           19 months of care for 720 VSI/SI      = $43.4 million
           caregivers
           19 months of care for 170 VSI         = $10.2 million
           caregivers
Other findings

          Access to information and resources vary.
          Benefits eligibility is a concern--generally more 
        resources for OIF/OEF veterans; little financial support for 
        those suffering solely from post-traumatic stress disorder 
        (PTSD) or mild to moderate traumatic brain injury (TBI) because 
        they don't quality for Traumatic Servicemembers' Group Life 
        Insurance (TSGLI) or for non-medical attendant (NMA) funding.
          Members in transition to VA often suffer period of 
        lapse in pay and benefits.
          Families need more education on medical conditions 
        like TBI and financial matters to prepare for the future.

    Defense Advisory Committee on Women in the Services (DACOWITS) 
October 17, 2008 Report, ``Support for Families of Wounded Warriors: 
Summary of DACOWITS Focus Groups''_By memorandum dated August 1, 2008, 
the Principal Deputy Under Secretary of Defense for Personnel and 
Readiness requested that DACOWITS conduct a short but intensive study 
on the level and consistency of military support experienced by family 
members of wounded warriors. DACOWITS conducted focus groups and 
interviews during August and September of 2008.

Findings/Recommendations

          Finding: Services and resources designed for wounded 
        warriors and their families/caregivers are extensive, but lack 
        integration (synchronization); as a result they often don't 
        reach the people they are designed to serve.
           Recommendation: Integration--better integration of existing 
        programs/resources.
          Finding: Systems are working tirelessly to meet needs 
        of the wounded, but need more information about the specific 
        needs of the families--can't fix what they do not know.
           Recommendation: Feedback--need multiple, dynamic and 
        innovative feedback mechanisms to gather and respond to 
        information.
          Finding: Many families do not know how to assist 
        their wounded warrior with their recovery.
           Recommendation: Training--educate family members on the 
        specific injury, what they can do to help, and resources that 
        are available for assistance.
          Finding: Families do not know about the services 
        available to them.
           Recommendation: Information dissemination--better 
        advertising of services available, including providing family 
        members civilian-friendly pocket guides that contain flow 
        chart, name, function, local contact data and next step 
        information for each stage of the recovery process.
          Finding: Programs should be measured for 
        effectiveness and to provide details for next steps.
           Recommendation: Metrics--systematically assess the needs of 
        wounded warrior families and use results to perform continuous 
        process improvement.
          Finding: Family members'/caregivers' input and 
        participation in some cases is not valued by medical providers 
        or information is withheld by non-medical support personnel due 
        to misunderstanding of confidentiality requirements.
           Recommendation: World class client care--educate individuals 
        involved in the care of wounded warriors to communicate in a 
        way that allows free exchange of important information and 
        recognizes the integral role of family members/caregivers in 
        the treatment and recovery process.
          Finding: Families expressed more satisfaction with 
        the tangible aspects of their support, but less satisfaction 
        with the intangibles like lack of educational information, 
        emotional support, assistance, and advocacy.
           Recommendation: Augment support--by partnering with non-
        profits and other agencies and individuals and establishing 
        support groups to meet these needs.

    June 2008, Interim Report of the ``Department of Veterans Affairs 
Advisory Committee on Operation Iraqi Freedom (OIF) and Operation 
Enduring Freedom (OEF) Veterans and Families''_An independent advisory 
Committee established in 2007 to assess the current situation of OIF/
OEF veterans and families; reviewed issues affecting families and 
caregivers; and transition from DoD to VA care.

Recommendations--VA should:

          Maintain contact with returned National Guard/Reserve 
        members and units, and families of injured servicemembers.
          Provide counseling services to caregivers and family 
        members whose mental health may be adversely affected while 
        providing care to the severely disabled veteran.
          Seek authority to include counseling services for 
        caregivers and families over a prolonged period of time (may 
        require legislation).
          Provide financial counseling to caregivers and fiscal 
        support while caring for the severely disabled veteran.
          Provide direct support to include reimbursements for 
        lodging, per diem, and transportation when the caregiver is at 
        the veteran's bedside at a VA facility (may require 
        legislation).
          Duplicate caregiver reimbursement and training 
        programs that already exist for spinal cord injury patients in 
        San Diego throughout the VA system and expand to include TBI 
        and Level One polytrauma patients.
          Enhance efforts to ensure caregivers are 
        appropriately informed of all benefits and entitlements for 
        themselves and the severely disabled veteran in their care.
          Ensure the recovery care coordinator (RCC) informs 
        the caregivers of all available benefits and provides 
        assistance and follow-up throughout the transition process.
          Ensure caregivers have ongoing contact and support 
        from the RCC upon returning home with the veteran.
          Designate the RCC to act as ombudsman for the 
        caregiver in navigating benefits and entitlements.
                      WHAT CAREGIVERS/FAMILIES SAY
    ``There's no human factor. Due to technology, we as people get lost 
in the process . . . If they would just speak to you about things . . . 
People don't speak to each other . . . I recommend they more 
proactively keep the family member informed . . . We need a person that 
guides us through the process.''
    ``Right now I'm fighting a battle. I'm going to [a VA facility] 
with my son; he's still an inpatient. I'm going by myself. I have a 
mortgage, bills. I quit my job to take care of my baby, my only son. 
I'm coming from another State . . . I can't find a job here because I'm 
always in the hospital.'' (DACOWITS Report, Army family member)
    ``I asked them at the VA [where his single son has been followed 
for several years for PTSD] whether they could provide us as his 
parents any counseling, and they said that they didn't have anything 
for us.'' (DACOWITS Report, Navy Family Member)
    ``I worry about how to plan for long-term care for my son should 
something happen to me and my husband. There is not age-appropriate 
care in the VA.'' (Mother of Navy son injured in 2007)
    ``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 MTF. 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.'' (Father of an 
Army son injured in 2007)
        RECOMMENDATIONS FOR IMPROVING CARE & SUPPORTIVE SERVICES
    Congress passed a number of provisions in the last 2 years to 
address the myriad issues facing those wounded or disabled. Many of 
these initiatives are aimed at helping members and their families 
navigate the often complex military and veterans' health care and 
benefit systems. While members and families tell us they are pleased 
with the care and support they receive in the military system, they are 
less than confident or secure when they leave the system. The safe 
haven and resources that troops and their families grow accustomed to 
while on active duty are inconsistent or in some cases, non-existent 
when the veteran enters longer-term care in the VA.
    Yes, much has been done. But caregivers, family members and those 
wounded and disabled continue to be frustrated with a large number of 
barriers and bureaucracies that still exist within and between the two 
departments. They wonder if anything has really changed, or if the 
government will be there to care and support them for the longer haul.
    DoD-VA Joint Seamless Transition Office. Congress extended the 
Senior Oversight Committee (SOC) only through December 11, 2009. 
However, the 2009 NDAA requires the Departments to submit a report in 
June 2009, providing recommendations for continuing the operations of 
the SOC, including any modifications to its responsibilities, 
composition, or support.
    MOAA believes strongly that many of the issues that we continue to 
hear about require major system fixes, not just patching the system 
with additional layers of programs and policies that further entrench 
the bureaucracies and buildup barriers.
    It is of overriding importance to authorize and implement a 
permanent, single, Joint Seamless Transition or SOC Office, responsible 
for managing, implementing, monitoring, and reporting to senior VA, DoD 
and congressional leaders on all aspects of the seamless transition 
process, including but not limited to:

          Joint, single separation physical;
          Consistent disability evaluation system (fairly 
        evaluating/compensating visible and invisible medical 
        conditions);
          Bi-directional electronic medical and personnel 
        records transfer;
          Medical centers of excellence and operations/research 
        collaboration; and coordination of care, treatment, and 
        information, including VA-DoD Federal/recovery coordinator, 
        clinical and non-clinical services, caregiver/family support 
        services, and case management programs.

System of Care and Support. It is essential to have a single, joint 
        system of care and support that:

          Focuses on servicemembers, veterans, and their 
        caregivers and family members;
          Provides simple, easy to understand, consistent, and 
        frequent information, when and where it is needed;
          Changes the current VA-DoD cultures from passive to 
        proactive--one that is dynamic, flexible, and adaptable, 
        providing a continuum of care; and,
          Provides bi-directional care and support--members, 
        caregivers/families move in and out of VA-DoD systems over 
        time, and data, services, and records must transfer seamlessly 
        between and within the system for continuity of care and 
        support.

Family Advocacy and Support

          Establish a VA-DoD Center of Excellence for Veteran/
        Military Caregivers/Families to provide oversight, policy and 
        programs for medical and non-medical care and support;
          Assign a single point of contact to the caregiver/
        family, to be an advocate and help navigate personnel, 
        benefits, health care and support systems; and
          Establish the Community Resource Coordinator Program 
        (CRCP) and National Board or Advisory Committee recommended by 
        the Quality of Life Foundation.

                  CRCP provides daily living caregiver support 
                from time of injury, during transition to community-
                based living, and long-term if needed.
                  National Board or Advisory Committee would 
                provide oversight and evaluate the effectiveness of the 
                program.

    MOAA strongly supports H.R. 593, the Enhanced Disability Severance 
Correction, to extend the authorized concurrent receipt of disability 
severance pay from the Department of Defense (DoD) and compensation for 
the same disability under any law administered by the Department of 
Veterans Affairs (VA) to include all veterans with a combat-related 
disability.

    Caregiver Compensation and Benefits--MOAA recommends the 
Subcommittee take action to:

          Authorize consistent VA-DoD compensation, training, 
        certification, and respite care for full-time family/
        caregivers;
          Authorize health care coverage for full-time 
        caregivers and their families;
          Improve information outreach for referral and direct 
        services for child care, legal and financial assistance, 
        counseling for full-time caregivers (DoD's Military OneSource 
        and Military Family Life Consultants Programs could be models 
        for VA use); and
          Require VA-DoD to conduct research and submit a joint 
        report on the impact of combat stress, TBI, and other war 
        injuries on full-time caregivers and family members, including 
        children, along with appropriate action to address the 
        resultant family member needs.

    MOAA strongly supports the Chairman's ``Wounded Warrior Project 
Family Caregiver Act of 2009'' (H.R. 2432), which would direct the 
Secretary of the VA to establish a family caregiver program that 
furnishes support services to family members certified as family 
caregivers who provide personal care services for certain disabled 
veterans. MOAA encourages the Subcommittee to work with other Members 
of Congress, VA and DoD to develop and implement identical programs and 
policies for caregivers of Members on active duty and in retired/
veteran status so that caregivers/family members would be equally 
qualified and eligible whether they are caring for their loved one in 
either a DoD or a VA setting.

    MOAA is particularly concerned that compensation for caregivers 
should be paid directly to caregivers rather than being provided as a 
benefit to the wounded, ill or injured servicemember or veteran.
    When the benefit is paid to the veteran, it too often does not 
reach the caregiver and thus fails to serve its intended purpose. Many 
servicemembers and veterans are either unaware that the payment is 
intended to cover the caregivers' needs or are incapable of 
understanding the situation by virtue of incapacitation.
    In other cases, the caregivers express great reluctance to accept 
money from the wounded servicemember.
    Caregivers who find their own lives and financial futures 
devastated, in some cases permanently, by the grievous service-caused 
wound, illness or injury of a loved one are owed a special debt by the 
Nation. And, extraordinary efforts are appropriate to recognize the 
extraordinary and wholly unforeseeable sacrifices that national service 
requirements have imposed on them through no fault of their own.
    This terrible burden has fallen on a parent or sibling or friend 
when a spouse has abandoned hope for any substantive recovery by the 
servicemember/veteran. In such cases, caregivers have forfeited not 
just their jobs, but their homes, savings, and retirement accounts and 
have been left penniless.
    The only reasonable answer to this extraordinarily unfair situation 
is to ensure that recognized and qualified caregivers receive 
appropriate compensation directly rather than through the 
servicemember/veteran.
                               CONCLUSION
    MOAA is grateful to the Subcommittee for its leadership on these 
difficult issues and for the commitment of the Congress, VA and DoD to 
addressing the pressing needs of wounded warriors and their families 
and other caregivers. It's clear from what we have heard today, and in 
recent hearings, that we've got more work to do.
    We believe if we focus more on the needs of the wounded and 
disabled and their families and less on the preferences of the multiple 
government bureaucracies and their systems administrators, then we will 
build the right system--one that is needed today and one built to 
anticipate the future.

                                 
 Prepared Statement of Barbara Cohoon, RN, Ph.D., Government Relations 
         Deputy Director, National Military Family Association
    The National Military Family Association is the leading nonprofit 
organization committed to improving the lives of military families. Our 
40 years of accomplishments have made us a trusted resource for 
families and the Nation's leaders. We have been at the vanguard of 
promoting an appropriate quality of life for active duty, National 
Guard, Reserve Members, retired servicemembers, their families, and 
survivors from the seven uniformed services: Army, Navy, Air Force, 
Marine Corps, Coast Guard, Public Health Service, and the National 
Oceanic and Atmospheric Administration.
    Association Representatives in military communities worldwide 
provide a direct link between military families and the Association 
staff in the Nation's capital. These volunteer Representatives are our 
``eyes and ears,'' bringing shared local concerns to national 
attention.
    The Association does not have or receive Federal grants or 
contracts.
    Our Web site is: www.MilitaryFamily.org.
    Barbara Cohoon, Deputy Director, Government Relations
    Ms. Cohoon was hired as Deputy Director of Government Relations for 
the National Military Family Association in July 2006. In that 
position, she monitors issues relevant to the quality of life of 
families of the uniformed services and represents the Association at 
briefings and other meetings. Ms. Cohoon currently serves on The 
Military Coalition's Veterans Affairs and Health Care Committees. She 
is a Member of the Department of Defense's (DoD) Uniform Formulary 
Beneficiary Advisory Panel. She has been appointed to DoD's Defense 
Health Board's TBI Family Caregivers Panel, Health Care Delivery 
Subcommittee, and the TBI Subcommittee. Her activities on behalf of the 
Association directly contribute to sustaining the TRICARE health care 
benefit for military servicemembers, retirees, and their families. Her 
expertise is used to provide independent advice and valuable 
recommendations to the Subcommittees and develop resource materials for 
TBI caregivers. She has also been appointed by the Alexandria City 
Council of Virginia to represent the city as a health care expert to 
the Health Systems Agency of Northern Virginia.
    Ms. Cohoon is originally from Andover, Massachusetts. She received 
a Diploma of Nursing from Lowell General Hospital, and a Master's of 
Science in Nursing and a Doctorate in Philosophy from the College of 
Health and Human Services with a concentration in health policy from 
George Mason University. She has more than 20 years of nursing 
experience in both military and civilian health care facilities. She is 
a member of the Honor Society of Nursing, Sigma Theta Tau. She has been 
published in peer-reviewed health care journals and writes regularly 
for the National Military Family Association.
    Ms. Cohoon has been a Navy submariner's spouse for over 30 years, 
which included 19 moves. She has been active in military spouses' 
clubs, various fund raisers, in the development and implementation of 
the first Joint Women's Conference for military spouses in Hawaii and 
an active mentor for the Command Spouses Leadership Course (CSLC). She 
has completed both the Ombudsman and Advanced Ombudsman Training 
courses. She was an Executive Advisor for the Fleet and Family Service 
Center, American Red Cross, Navy Relief Society, King's Bay Naval Base 
Medical Clinic and various fundraising events from 2002--2004. She 
worked as a volunteer for the CNO directed Task Force Navy Family for 
Hurricane Katrina evacuees. She is a member of the Naval Officers' 
Spouses' Club of Washington, DC, the National Military Family 
Association, and a lifetime Member of the Navy League. She has two 
boys. One is a graduate of Lynchburg College in History and the other 
from Georgia Tech in Mechanical Engineering. She currently resides in 
Old Town Alexandria, VA where she and her husband have renovated a 115+ 
year-old home.
    Chairman Michaud and Distinguished Members of this 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.'' National Military Family Association will 
take the opportunity to discuss several issues of importance to family 
caregivers of the wounded, ill, and injured servicemembers, veterans, 
and their families in the following subject areas:
  
 I.                                 Wounded Servicemembers Have Wounded
                                    Families
II.                                Who Are the Families of Wounded
                                    Servicemembers?
III.                               Caregivers
IV.                                Mental Health
V.                                 Case Management
VI.                                Senior Oversight Committee

Wounded Servicemembers Have Wounded Families

    The National Military Family Association asserts that behind every 
wounded servicemember and veteran is a wounded family. Spouses, 
children, parents, and siblings of servicemembers injured defending our 
country experience many uncertainties. Fear of the unknown and what 
lies ahead in future weeks, months, and even years, weighs heavily on 
their minds.
    Transitions can be especially problematic for wounded, ill, and 
injured servicemembers, veterans, and their families. The Department of 
Defense (DoD) and the Department of Veterans Affairs (VA) health care 
systems, along with State agency involvement, should alleviate, not 
heighten these concerns. The National Military Family Association 
believes the government must take a more inclusive view of military and 
veterans' families. Those who have the responsibility to care for the 
wounded servicemember and veteran must also consider the needs of the 
spouse, children, parents of single servicemembers, siblings, and 
especially the caregivers.

Who Are The Families of Wounded Servicemembers?

    In the past, the VA and the DoD have generally focused their 
benefit packages for a servicemember's family on his/her spouse and 
children. Now, however, it is not unusual to see the parents and 
siblings of a single servicemember presented as part of the 
servicemember's family unit. In the active duty, National Guard, and 
Reserve almost 50 percent of the Members are single. Having a wounded 
servicemember is new territory for family units. Whether the 
servicemember is married or single, their families will be affected in 
some way by the injury. As more single servicemembers are wounded, more 
parents and siblings must take on the role as caregiver, helping their 
son, daughter, or sibling through the recovery process. Family Members 
are an integral part of the health care team. Their presence has been 
shown to improve the servicemember and veteran's quality of life and 
aid in a speedy recovery.
    The National Military Family Association recently gathered 
information about issues affecting our wounded servicemembers, 
veterans, and their families through our Operation Purple Healing 
Adventure Camp in August 2008 and a focus group held in March 2008 at 
Camp Lejeune. Families said they find themselves having to redefine 
their roles following the injury. They must learn how to parent and 
become a spouse/lover of someone with an injury. Spouses talked about 
the stress their new role as caregiver has placed on them and their 
families. Often overwhelmed, they feel as if they have no place to turn 
to for help. We found many have put their own lives on hold while 
caring 24/7 for their loved one.

Caregivers

    Caregivers need to be recognized for the important role they play 
in the care of their loved one. Without them, the quality of life of 
the wounded, ill, and injured servicemembers and veterans, such as 
physical, psycho-social, and mental health, would be significantly 
compromised. They are viewed as an invaluable resource to VA and DoD 
health care providers because they tend to the needs of the 
servicemembers and the veterans on a regular basis. Their daily 
involvement saves VA, DoD, and State agency health care dollars in the 
long run.
    Caregivers of the severely wounded, ill, and injured services 
members who are now veterans 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. National Military Family Association is pleased 
with the `Family Caregiver Program Act of 2009' (S. 801) legislation 
recently proposed by Senator Daniel K. Akaka (D-HI), Senator Richard 
Burr (R-NC), and Senator John D. Rockefeller (D-WV), and Congressman 
Michael H. Michaud's (D-2nd/ME) `Wounded Warrior Project Family 
Caregiver Act of 2009' (H.R. 2342) that will provide for the training, 
certification, and compensation for caregivers of wounded veterans. 
Both of these proposals place VA in an active role in recognizing 
caregivers' important contributions and enabling them to become better 
caregivers to their loved ones. It is a ``win win'' for everyone 
involved.
    National Military Family Association is appreciative of the two 
``Caregiver'' proposals by both Chambers. However, the time to 
acknowledge the caregiver's important role and to implement a 
standardized, certified program, and begin compensation is while the 
wounded, ill, and injured servicemember is still on active duty status. 
The self-selection process of a caregiver occurs during the early phase 
of the recovery process. All branches of the Services are holding onto 
their wounded, ill, and injured servicemembers much longer than 
previous wars. Years may have passed before the caregiver and the 
wounded, ill, and injured servicemember reach eligibility and can 
benefit from these important programs and services. Therefore, we 
recommend that 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.

Compensation for the Caregiver

    A recent report by the Center for Naval Analysis determined there 
were approximately 720 wounded, ill, and injured servicemembers needing 
a caregiver, of which 170 would be classified as caring for the very 
seriously wounded, ill, and injured. They stated: caregivers provided 
on average 10 hours of care per week; care was needed for approximately 
19 months; and 43 percent expected to need a caregiver for life. 
Eighty-five 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. 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 and the veteran receives an 
additional monthly stipend. Currently, there lacks a policy to 
compensate a caregiver for services provided to a wounded, ill, and 
injured servicemember or veteran.
    Our Association proposes that new types of financial compensation 
be established for caregivers of wounded, ill, and injured 
servicemembers and veterans that could begin while the hospitalized 
servicemember is still on active duty and continue throughout the 
transition to care under the VA. This compensation should recognize the 
types of medical and non-medical care services provided by the 
caregiver, travel to appointments and coordinating with providers, and 
the severity of injury. It should also take into account the changing 
levels of service provided by the caregiver as the veteran's condition 
improves or diminishes or needs for medical treatment changes. These 
needs would have to be assessed quickly with little time delay in order 
to provide the correct amount of compensation.
    We believe the caregiver should be paid directly for their 
services, but the compensation should be linked to training and 
certification paid for by the VA and transferrable to employment in the 
civilian sector if the care is no longer needed by the servicemember or 
veteran.
    Consideration should also be given to creating innovative ways to 
meet the health care and insurance needs of the caregiver, with an 
option to include their family. Citing the Center for Naval Analysis 
report, a large percentage of caregivers leave work in order to care 
fulltime for the wounded, ill, and injured servicemember and veteran. 
This action may create a situation where the caregivers are no longer 
eligible for their employers' health care plans. Our Association has 
also seen situations where the wounded, ill, and injured servicemember 
was discharged following a Physical Evaluation Board (PEB) without 
qualifying for medical retirement. This creates the environment where 
the family is ineligible for TRICARE following discharge, and they are 
ineligible for CHAMPVA until the veteran reaches 100 percent 
disability. The veteran's family and caregiver have the option to 
purchase TRICARE through the Continued Health Care Benefit Program but 
only a limited time period. Our concern is there could be a significant 
time lapse between discharge and qualification by the VA for CHAMPVA. 
This places the family and caregiver in a vulnerable situation because 
the ability to purchase TRICARE may have expired and may no longer be 
available. However, the family and the caregiver still need health care 
coverage. Unfortunately they are unable to work outside of the home due 
to their caregiver duties and they have limited options to purchase 
health care insurance for themselves or their family. Perhaps, 
caregivers of severely wounded, ill, and injured servicemembers or 
veterans can be given the option of buying health insurance through a 
civilian or government insurance program or receiving health care 
through enrollment in CHAMPVA.
    The financial strain placed on the family of our wounded, ill, and 
injured servicemember and veteran by the caregiver leaving outside 
employment has a ripple down effect. Caregivers who have been saving 
for retirement now find they are ineligible for their employers' 401ks. 
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 be competitive in today's workforce. We 
recommend VA offer these caregivers the opportunity to participate in 
their 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 servicemembers 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 done by NGOs and charities.
    There must also be a provision for transition for the caregiver if 
the caregiver's services are no longer needed, chooses to no longer 
participate, or is asked by the veteran to no longer provide services. 
The caregiver should still be able to maintain health care coverage for 
1 year. Compensation would discontinue following the end of services/
care provided by the caregiver.
    Our Association looks forward to discussing details of implementing 
such a plan with Members of this Subcommittee.

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 both proposed legislations, S. 801 and H.R. 2342, 
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.

Relocation Allowance

    Active Duty servicemembers 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 servicemembers are given a final PCS move. 
Medically retired married servicemembers are allowed to move their 
family; however, medically retired single servicemembers only qualify 
for moving their own personal goods.
    National Military Family Association is requesting the ability for 
medically retired single servicemembers to be allowed the opportunity 
to have their caregiver's household goods moved as a part of the 
medical retired single servicemember's PCS move. This should be allowed 
for the qualified caregiver of the wounded servicemember and the 
caregiver's family (if warranted), such as a sibling who is married 
with children or mom/stepmom and dad/stepdad. This would allow for the 
entire caregiver's family to move, not just the caregiver. The reason 
for the move is to allow the medically retired single servicemember 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 medically retired single servicemember 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 be able to 
provide all the health care services required for treating and caring 
for the medically retired servicemember. Instead of trying to create 
the services in the area, a better solution may be to allow the 
medically retired servicemember, 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 Federal Recovery Coordinator (case manager), the 
servicemember's physician, the servicemember, and the caregiver. All 
aspects of care for the medically retired servicemember and their 
caregiver shall be considered. These include a holistic examination of 
the medically retired servicemember, 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 medically retired servicemember and his/her 
caregiver.
    The consideration for a temporary partial shipment of caregiver's 
household goods may also be allowed, if deemed necessary by the case 
management team.

Veteran Housing

    Many of our wounded, ill, and injured servicemembers and veterans 
from this current conflict are being cared for by their parents. Also, 
many adult children of our senior veterans are experiencing firsthand 
trying to juggle the needs of the parents along with the needs of the 
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 now unable to fulfill the role of caregiver. 
Caregivers may reach burn out 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 servicemembers, 
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 servicemembers and their 
families transition to veteran status. Veterans' families and caregiver 
needs 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 and their families and caregiver 
that will require VA's attention over the long-term. National Military 
Family Association recommends Congress require Vet Centers and the VA 
to develop a holistic approach to veteran care by including their 
families and caregivers in providing mental health counseling and other 
programs.
    National Military Family Association is especially concerned with 
the scarcity of services available to the veteran's families and 
caregiver 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. We recommend the VA establish similar programs to help the 
caregiver and the veteran's family deal with the residual effects from 
long frequent deployments.
    We appreciate S. 801 and H.R. 2342 will provide counseling and 
mental health services; however, many will choose to locate in rural 
areas where there may be no mental health providers available. We ask 
you to address the distance issues veteran's families and their 
caregiver face in linking with mental health resources and obtaining 
appropriate care. Many isolated veterans, caregivers, and their 
families do not have the benefit of the safety net of services and 
programs provided by MTFs, VA facilities, Community-Based Outpatient 
Centers, and Vet Centers. Our Association recommends the use of 
alternative treatment methods, such as telemental health. Another 
solution is modifying licensing requirements in order to remove 
geographical practice barriers preventing mental health providers from 
participating in telemental health services outside of a VA facility.
    The VA must educate their health care and mental health 
professionals, along with veterans' families and caregivers of the 
effects of mild Traumatic Brain Injury (TBI) in order to help 
accurately diagnose and treat the veteran's condition. Veterans' 
families and caregivers are on the ``sharp end of the spear'' and are 
more likely to pick up on changes contributed to either condition and 
relay this information to VA providers. Our Association recommends 
caregivers, spouses, parents, and family members of veterans need 
programs providing education on identifying mental health, substance 
abuse, suicide, and Traumatic Brain Injury (TBI).

Reintegration Programs

    Reintegration programs become a key ingredient in the veteran, 
caregiver, and the family's success. In spring of 2008, our Association 
held a focus group composed of wounded servicemembers and their 
families to learn more about issues affecting them. As we stated 
earlier, families find themselves having to redefine their roles 
following the injury of the servicemember. They must learn how to 
parent and become a spouse/lover with an injury. Each Member needs to 
understand the unique aspects the injury brings to the family unit. 
Parenting from a wheelchair brings a whole new challenge, especially 
when dealing with teenagers. Parents need opportunities to get together 
with other parents who are in similar situations and share their 
experiences and successful coping methods. Once these families fall 
under the VA's realm of responsibility, the VA needs to provide family 
and individual counseling to address these unique issues. Opportunities 
for the entire veteran family, along with time for the couple to 
reconnect and bond as a family again, must also be provided by the VA.

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.

Case Management

    Our wounded, ill, and injured servicemembers, veterans, and their 
families are assigned case managers. In fact, there are many different 
case managers: Federal Recovery Coordinators (FRC), Recovery Care 
Coordinators, each branch of Service, TBI care coordinators, VA 
liaisons, etc. The goal is for a seamless transition of care between 
and within the two governmental agencies: VA and DoD. However, with so 
many to choose from, families often wonder which one is the ``right'' 
case manager. We often hear from families, some who have long since 
been medically retired with a 100 percent disability rating or others 
with less than 1 year out from date-of-injury, who have not yet been 
assigned a FRC. We need to look at whether the multiple, layered case 
managers have streamlined the process, or have only aggravated it. Our 
Association still finds these families alone trying to navigate a 
variety of complex health care systems trying to find the right 
combination of care. Many qualify for and use Medicare, VA, DoD's 
TRICARE direct and purchased care, private health insurance, and State 
agencies. Once discharged from in-patient status our wounded, ill, and 
injured servicemembers and veterans often find themselves relying on 
community resources. The National Resource Directory has been 
established to address this need; however, many families and caregivers 
state there still lacks a person they can contact for local medical and 
non-medical resource information. The Quality of Life Foundation's 
report ``Wounded Warrior Family Care Report'' (http://
www.qolfoundation.org/docs/wwfcr--report--web2.pdf) suggested a 
Community Resource Coordinator be created. We believe this option may 
be a viable solution and recommend this should be examined further to 
fully explore its effectiveness in the case management process.

Senior Oversight Committee

    Our Association is appreciative of the provision in the National 
Defense Authorization Act for Fiscal Year 2009 (NDAA FY09) continuing 
the DoD/VA Senior Oversight Committee (SOC) for an additional year. We 
understand a permanent structure is in the process of being established 
and manned. We urge Congress to put a mechanism in place to continue to 
monitor VA and DoD's partnership initiatives for our wounded, ill, and 
injured servicemembers, veterans, their families, and caregivers while 
this organization is being created.
    National Military Family Association proposes the top agenda items 
that would benefit veterans, wounded servicemembers, their families, 
and caregivers are:

     Coordination and collaboration of health care and behavioral 
health care services between the VA, DoD, and State and governmental 
agencies in sharing of resources;

     Train, certify, compensate, and provide benefits to include health 
care for the caregivers of our severely wounded servicemembers and 
veterans;

     Increased respite care and 24-hour supervision for wounded, ill, 
and injured veterans and their caregivers;

     Eligible for health care services for caregivers and their 
families;

     Encourage the VA to develop alternative housing and living 
arrangements for veterans and the families who care for them. These 
projects will need to be funded by Congress;

     Increased access to behavioral health services for caregivers of 
wounded, ill, and injured veterans and their families;

     Provide opportunities for the entire family to reconnect and bond 
as a family again;

     Increased outreach to veterans, their families, and the 
communities they live in about available benefits and services, 
including education on the signs and symptoms of behavioral health 
conditions and available resources;

     Examine whether the multiple, layered case managers have 
streamlined the process, or have only aggravated it, and the 
effectiveness of creating a Community Resource Coordinator; and

     Continued oversight of the SOC by Members of Congress.

    National Military Family Association would like to thank you again 
for the opportunity to provide testimony on veteran's caregiver issues 
and gaps in supportive services. Military families support the Nation's 
military missions. The least their country can do is make sure 
servicemembers, veterans, their families, and caregivers have 
consistent access to high quality health care. Wounded servicemembers 
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 veterans, their families, and caregivers.

                                 
  Prepared Statement of Jill Kagan, MPH Chair, ARCH National Respite 
                               Coalition
    Mr. Chairman and Members of the Subcommittee,
    My name is Jill Kagan and I am chair of the ARCH National Respite 
Coalition. The Coalition is the policy division of the ARCH National 
Respite Network and Resource Center, a Membership organization of 
respite providers, family caregivers, and representatives of public and 
private State and local agencies across the country. Twenty-two State 
respite coalitions and five State Lifespan Respite Programs are also 
currently affiliated with the NRC. I am honored to have this 
opportunity to present testimony on the importance of respite as a 
critical need of Family Caregivers of Veterans.

What is Respite?

    Respite care provides temporary relief for family caregivers from 
the ongoing responsibility of caring for an individual of any age with 
special needs. As a preventive strategy, respite helps strengthen 
families, protects their health and well-being, and allows them to 
continue providing care at home. Respite is also an important 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.
    Ideally, a variety of respite models would be available in a given 
community to provide an array of options for family caregivers, 
depending on their evolving needs over time. Sometimes in-home services 
are required so family caregivers can tend to obligations, medical or 
other critical appointments, or recreation outside the home. At other 
times, the care recipient may benefit from out-of-home services to 
engage in social activities or therapeutic services, which allows the 
family caregiver time to do household tasks, tend to other family 
members, or simply take a much-needed break. Out-of-home services may 
take place in facility-based settings, such as adult day services or 
hospitals, or churches, schools, camps, foster homes, or the homes of 
relatives, friends or neighbors. Some out-of-home services are 
facilities designed specifically to provide respite. In the best of 
circumstances, services would be available on an hourly or weekly 
basis, and also provide evening or weekend care. Services can be 
provided in-home or out-of-home by trained respite providers with 
varying degrees of medical or mental health expertise, volunteers, 
neighbors, other family members or friends.

Who Needs Respite?

    In 2004, a national survey found that 44 million family caregivers 
provide care to individuals over age 18 with disabilities or chronic 
conditions (National Alliance for Caregiving (NAC) and AARP, 2004). 
AARP's most recent survey estimates that in 2007, about 34 million 
caregivers age 18 or older are providing an average of 21 hours of care 
per week to adults with limitations in daily activities. The estimated 
34 million caregivers represent the number giving care at any given 
point. An even higher number, about 52 million, provided care at some 
point during the year (Gibson and Hauser, 2008).
    Today, we are talking specifically about the respite and support 
needs of family caregivers of veterans. In 2007, there were an 
estimated 26.3 million veterans; 9.3 million were 65 and older. Six 
million veterans are estimated to have a disability; 2.7 million 
received compensation for service-connected disabilities as of 2006. 
Their compensation totaled $28.2 billion (U.S. Census Bureau, 2008). 
According to the 2001 National Survey of Veterans, the average age of 
the veteran population was 58 years old in 2000, with the largest group 
of veterans between the ages of 45 and 64.
    The number of family caregivers of veterans is high and climbing. 
For the most recent victims, the soldiers returning from Iraq and 
Afghanistan, new challenges are evident because of the extremely 
serious nature of their disabling conditions. According to the VA 
Geriatrics and Extended Care Polytrauma Rehabilitation Task Force: 
``The care requirements of severely injured OEF/OIF veterans will vary 
throughout the veterans' lives. In some instances, the care needs will 
diminish or cease, and in other instances the care needs will broaden 
and intensify. 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 the following programs: inpatient and 
home respite, homemaker/home health aide, and ADHC. However, there are 
locations in which caregiver support is minimally available through any 
resource, and the Task Force anticipates considerable challenges in 
reliably meeting the caregiver support needs in all communities (U.S. 
Department of Veterans Affairs, Veterans Health Administration, Report 
of the VA Geriatrics and Extended Care Polytrauma Rehabilitation Task 
Force, February 2008).
    It has been estimated that family caregivers overall provide $375 
billion in uncompensated care, an amount almost as high as Medicare 
spending ($432 billion in 2007) and more than total spending for 
Medicaid, including both Federal and State contributions and both 
medical and long-term care ($311 billion in 2005) (Gibson and Hauser, 
2008). Family caregivers are providing an estimated 80 percent of all 
long-term care in the U.S. This percentage will only rise in the coming 
decades with increasing numbers of severely wounded veterans returning 
home from the ongoing wars in Iraq and Afghanistan, the greater life 
expectancies of individuals with Down Syndrome and other disabling and 
chronic conditions, the aging of the baby boom generation, and the 
decline in the percentage of the frail elderly who are entering nursing 
homes. This decline is due partially to the growing number of 
individuals moving to privately funded assisted living facilities 
(about 1 million individuals are in assisted living), but even more 
older individuals, with fewer disabilities and more wealth, are 
choosing to stay at home with support from home and community-based 
services and supports (Alecxih, L, Lewin Group, 2006).
    This trend toward home and community-based services among 
individuals of all ages and disabling conditions has been encouraged by 
the advent of the Supreme Court's Olmstead decision which required that 
individuals with disabilities be able to live and work in the least 
restrictive environment, and an emerging Federal policy direction that 
focuses on home and community-based care rather than institutional 
placement. States wishing to reduce Medicaid long-term care 
expenditures have also refocused their policies to support home and 
community-based services.

Respite Benefits Families and is Cost Saving

    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 placements, such as nursing homes or foster care, minimizes the 
precursors that can lead to abuse and neglect, and strengthens 
marriages and family stability. A recent report from the U.S. 
Department of Health and Human Services prepared by the Urban Institute 
found that higher caregiver stress among those caring for the aging 
increases the likelihood of nursing home entry. Reducing key stresses 
on caregivers, such as physical strain and financial hardship, through 
services such as respite would reduce nursing home entry (Spillman and 
Long, U.S. DHHS, 2007).
    Respite for the elderly with chronic disabilities in a study group 
resulted in fewer hospital admissions for acute medical care than for 
two control groups who received no respite care (Chang, J.I., et al, 
1992). Sixty four percent of caregivers of the elderly receiving 4 
hours of respite per week after 1 year reported improved physical 
health, 78 percent improved their emotional health, and 50 percent 
cited improvement in the care recipient. Forty percent said they were 
less likely to institutionalize the care recipient because of respite 
(Theis, S.L., et al, 1994). Caregivers of relatives with dementia who 
used adult day care experienced lower levels of caregiving related 
stress and better psychological well-being than a control group not 
using the service. Differences were found in both short-term (3 months) 
and long-term (12 months) users (Zarit, S.H., et al, 1998). In a study 
to determine whether adult day service use was related to decreases in 
primary caregiving hours, it was found that adult day service users 
reported greater decreases in hours spent on behavior problems when 
compared to nonusers, and decreased frequency of behavior problems in 
relatives who attended adult day program. Findings suggest that adult 
day services, if used over time, are effective in restructuring 
caregiving time and may offer benefits to family caregivers and to 
older adults with dementia (Gaugler, JE, Jarrott SE, Zarit, SH, 2003).
    The budgetary benefits that accrue because of respite are just as 
compelling, especially in the policy arena. Delaying a nursing home 
placement for just one individual with Alzheimer's or other chronic 
condition for several months can save Medicaid and other Federal and 
State government long-term care programs thousands of dollars. In the 
private sector, a study by Metropolitan Life Insurance Co. and the 
National Alliance for Caregivers, found that U.S.businesses lose from 
$17.1 billion to $33.6 billion per year in lost productivity of family 
caregivers (MetLife and NAC, 2006). A family's personal economic 
situation can also be drastically affected. Offering respite to working 
family caregivers could help improve job performance and employers 
could potentially save billions of dollars.

Barriers to Respite

    While most family caregivers take great joy in helping their family 
members to live at home, it has been well documented they experience 
physical and emotional problems directly related to their caregiving 
responsibilities (Keller, 2004; Butler, 2005; Family Caregiver 
Alliance, Fact Sheet, 2006; Loretta-Secco, M, et al, 2006; 2006; 
Pinquart and Sorensen, 2007). Three-fifths of family caregivers ages 
19-64 surveyed by the Commonwealth Fund reported fair or poor health, 
one or more chronic conditions, or a disability, compared with only 
one-third of non-caregivers (Ho, Collins, Davis and Doty, 2005). A 
study of elderly spousal caregivers (aged 66-96) found that caregivers 
who experience caregiving-related stress have a 63 percent higher 
mortality rate than noncaregivers of the same age (Schulz and Beach, 
1999).
    State and local surveys have shown respite to be the most 
frequently requested service of the family caregivers who ask for help. 
(Evercare and NAC, 2006; Brazil, K, et al, 2005; Fox-Grage, W, Coleman, 
B, Blancato, R, 2001; ongoing personal communications with State 
Respite Coalitions). Yet respite is unused, in short supply, 
inaccessible, or unaffordable to a majority of the Nation's family 
caregivers. The 2004 NAC/AARP survey of caregivers found that despite 
the fact that the most frequently reported unmet needs were ``finding 
time for myself,'' (35 percent), ``managing emotional and physical 
stress'' (29 percent), and ``balancing work and family 
responsibilities'' (29 percent), only 5 percent of family caregivers 
were receiving respite (NAC and AARP, 2004). In rural areas, the 
percentage of family caregivers able to make use of respite was only 4 
percent (Easter Seals and NAC, 2006).
    While these surveys did not specifically ask why families were not 
using respite services, barriers to accessing respite have been well 
defined in the literature. They include cost, reluctance to ask for 
help, failure to identify as a caregiver, fragmented and narrowly 
targeted services, feelings of social isolation, lack of respite 
options, and the lack of information about how to find or choose a 
provider (Whitlatch, CJ, et al, 2006; Yanitz, NM, et al, 2007; Damiani 
G., et al; 2004; Sharlach, S, et al, 2003). Even when respite is 
funded, a critically short supply of well trained respite providers may 
prohibit a family from using a service they so desperately need 
(Larson, SA, 2004; ongoing communication with State respite 
coalitions).
    Restrictive eligibility criteria also preclude many families from 
receiving services or continuing to receive services they once were 
eligible for, especially for those in the age group 18-60. Trained 
respite providers and/or funding sources may not exist at all in some 
States for individuals, including veterans, under age 60 with 
conditions such as ALS, MS, spinal cord or traumatic brain injuries.
    In this age group 18-60, those most at risk for limited access to 
respite are the families of the wounded warriors--those military 
personnel returning from Iraq and Afghanistan with traumatic brain 
injuries, post-traumatic stress syndrome and other serious chronic and 
debilitating conditions. A recent report from the Department of 
Veterans Affairs at the Veterans Health Administration concluded: 
``Challenges remain, as the men and women who experience serious 
debilitating injuries, polytrauma, or traumatic brain injury (TBI) may 
require treatment spanning multiple health care systems and may need 
long-term care, personal assistance, and family support spanning 
decades.''
    To facilitate the transition from institutional care to the home 
and community and plan for the ensuing needs for long term services and 
supports for severely injured veterans of the current war, the 
Geriatrics and Extended Care Polytrauma Rehabilitation Task Force 
(GECPR) was established in May 2007. One of the major recommendations 
of the Task Force was to ``Improve access to, and utilization of, 
respite services for younger veterans.'' (U.S. Department of Veterans' 
Affairs, Veterans Health Administration, Report of the VA Geriatrics 
and Extended Care Polytrauma Rehabilitation Task Force, February 2008).
    For the growing number of veterans with TBI or other polytrauma, VA 
has authority to provide respite both in home and in other settings, 
yet respite is often underutilized. In-home providers may not be 
available in many communities, and inpatient respite, generally 
available in a community nursing home or VA hospital, may not be 
amenable to young veterans and their families. The shortage of well-
trained staff qualified to provide respite to this population is 
especially critical given their complex diagnoses. Identifying and 
ameliorating special barriers for this population should be addressed.

Current Federal and State Resources Are Limited or Nonexistent

    Disparate and inadequate funding streams exist for respite in many 
States. The largest source of Federal funds for respite outside the VA 
is available through various State Medicaid Home and Community-Based 
Waivers, but services are capped, eligibility criteria are restricted 
by age or disability, and waiting lists prevail (Friss Feinberg, 50-
State Survey, 2004). Numerous other Federal and State categorical 
programs have been identified which have the potential to fund respite 
for caregivers, but only for caregivers of individuals with specific 
disabilities, ages, or incomes, or for one narrow purpose. These 
efforts provide a critically important foundation on which to build 
systems of respite care, but they currently do not do enough to reduce 
the fragmentation, the inaccessibility, and the confusion that exists 
around multiple eligibility criteria, numerous funding streams, and 
qualified provider shortages.
    In 1999, the Millennium Health Care Act was amended to expand 
respite services for veterans who qualify for health benefits. Public 
Law 106-117 expanded the array of community-based respite services 
available to veterans to include community nursing homes and non-
institutional settings for respite care. Prior to the passage of Pub. 
L. 106-117, respite care authorization was limited to VA inpatient CLC 
(formerly known as VA nursing homes) or hospital beds. The Veterans' 
Health Administration is now committed to the provision of clinically 
appropriate respite care services through the use of various 
institutional and non-institutional programs such as: CLC, Community 
Nursing Home (CNH), Homemaker and/or Home Health Aide (H/HHA), Adult 
Day Health Care (ADHC). Respite services are primarily a resource for 
veterans whose caregivers are neither provided respite services 
through, nor compensated by, a formal care system (i.e., Community 
Residential Care (CRC) program agreements, Medicaid waiver programs, 
Hospice programs, and others for which the veteran is dually eligible). 
While respite options for veterans have certainly expanded in the last 
decade, administrative criteria still limit the type, extent and 
availability of services. From the VHA Handbook dated November 10, 
2008:

        a.  Veterans seeking respite services must be enrolled for VHA 
        health care and receive established, on-going, routine health 
        care services from a VA or contracted VA health care provider 
        or care team.
        b.  The respite care benefit provides respite services to 
        eligible veterans for up to 30 days in a calendar year. This 
        30-day program limit includes the sum of all respite-specific 
        resources provided, regardless of the setting.
        c.  For VA program purposes, ``a day'' of respite is defined as 
        any single day in which respite services are provided to the 
        veteran, that is, up to 6 hours of care per day in the home, 
        greater than 4 hours of care in adult day health care, or 24 
        hours of care per day in an inpatient setting.
        d.  Veterans who are in need of respite services in excess of 
        30 days because of unforeseen difficulties, such as the illness 
        or death of a primary caregiver, with the approval of the 
        medical center Director, or designee, may be granted additional 
        days.
        e.  When inpatient respite care is provided in VA CLCs or 
        medical centers, beds may not be designated exclusively for 
        respite care. VA medical centers are not authorized to provide 
        respite services in any ambulatory care clinic settings other 
        than the formal ADHC Programs.
        f.  When a veteran is admitted for respite care, services 
        provided are subject to the applicable standards of care for 
        that care setting. For example, in the VA CLC, services must 
        meet The Joint Commission's long-term care standards. NOTE: 
        State and Federal standards must be met by VA-contracted CNHs 
        and in the delivery of home health services.
        g.  Respite care is available in a variety of settings; 
        therefore, program access and admissions must follow the same 
        guidelines for admission currently applicable within VHA and 
        non-VHA inpatient and outpatient programs.
        h.  Long-term Care (LTC) copayments apply to respite care 
        regardless of the setting or service that provides such care. A 
        LTC copayment test must be completed for each veteran 
        requesting extended care services, to determine the extended 
        care copayment exemption or non-exemption.

    Eligibility criteria also mean there are veterans who would not 
qualify at all for respite benefits under the Millennium Health Care 
Act. For admission to respite care the following criteria must be met:

        a.  The veteran has a diagnosed chronic disabling illness or 
        condition.
        b.  The veteran lives at home and requires substantial 
        assistance in ADL in order to continue to reside safely in the 
        home.
        c.  The veteran's caregiver is in need of temporary or 
        intermittent relief from day to day care tasks in order to 
        sustain this care-giving role.
        d.  The veteran must meet clinical criteria, as well as 
        eligibility criteria for nursing home and long-term care (Pub. 
        L. 106-117). Clinical criteria include:

                1.  Dependence in three or more ADLs or significant 
                cognitive impairment, and
                2.  Two or more of the following conditions:

                        a.  Dependence in three or more IADLs.
                        b.  Recent discharge from a nursing home.
                        c.  75 years old, or older.
                        d.  Identification as a high utilizer of 
                        medical services (defined as having three or 
                        more hospitalizations in the past year, or 
                        utilizing outpatient clinics or emergency 
                        evaluations twelve or more times within the 
                        preceding 12 months).
                        e.  Is clinically depressed.

    In addition, the VA requires copayments for non-exempt veterans for 
extended care services, including respite. Co-payments for respite care 
can also be prohibitive for many veterans and their family caregivers, 
especially if they are older and living on fixed incomes, or are 
already under financial distress because family members have given up 
employment to provide continuous care and support. For these families, 
respite is perceived as a luxury they cannot afford and even minimal 
copayments can be extremely burdensome. Currently, VA-required 
copayments range from $15 per day for non-institutional adult day 
health or respite care to $97 per day for institutional respite care.
    Veterans whose household income exceeds both the current year VA 
national income threshold ($34,117, with one dependent), and who do not 
have a compensable VA service-connected disability, are not eligible 
for VA care. Family caregivers of veterans who do not qualify for 
respite through the VA may turn to State or local respite funding 
sources. However, the system is already overburdened and unable to keep 
up with the increasing demand. Twenty of 35 State-sponsored respite 
programs surveyed in 1991 reported that they were unable to meet the 
demand for respite services. In the last 15 years, we suspect that not 
too much has changed. A study conducted by the Family Caregiver 
Alliance identified 150 family caregiver support programs in all 50 
States and Washington, DC funded with State-only or State/Federal 
dollars. Most of the funding comes through the Federal National Family 
Caregiver Support Program. As a result, programs are administered by 
local area agencies on aging and primarily serve the elderly. And 
again, some programs provide only limited respite, if at all. Only 
about one-third of these 150 identified programs serve caregivers who 
provide care to adults age 18-60 who must meet stringent eligibility 
criteria. As the report concluded, ``State program administrators see 
the lack of resources to meet caregiver needs in general and limited 
respite care options as the top unmet needs of family caregivers in the 
States.'' The State respite coalitions and other National Respite 
Network Members confirm that long waiting lists or turning away of 
clients because of lack of resources is still the norm.
    In 2006, in the reauthorization of the Older Americans Act, the 
National Family Caregiver Support Program's definition of family 
caregivers was expanded by including caregivers caring for anyone with 
Alzheimer's or related neurological condition of any age, by lowering 
the eligibility age of grandparent caregivers to 55, and by allowing 
eligibility for grandparents or other relative caregivers to care for 
children over the age of 18 with disabilities (Older American Act 
Reauthorization, P.L. 109-365). The funding for the program, however, 
has not increased.
    These limitations in existing respite funding streams are confusing 
not only to families, but to the States that rely on them. In addition, 
while many of these programs have the potential to fund respite, they 
are not mandated to do so. Competing demands for these funds or lack of 
information on the part of consumers often result in no or limited 
Federal funds from these various programs being used to support respite 
(Day, S., ARCH, 1999; Whirrett, T., ARCH, 2002; Baker, L, ARCH 
2004).The result is a complicated bureaucratic maze of services that 
families must navigate to find or pay for services, as well as 
duplication and fragmentation of respite services. Even when family 
resources are available to pay for respite, finding quality respite 
that meets a family's needs and preferences, and is appropriate, safe, 
culturally acceptable, or geographically accessible may be impossible.

States Respond with Model Lifespan Respite Systems

    Lifespan Respite, which is a coordinated system of community-based 
respite services, helps States use limited resources across age and 
disability groups more effectively, instead of each separate State 
agency or community-based organization being forced to constantly 
reinvent the wheel or beg for small pots of money. 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 for families who may not currently qualify for any 
existing Federal or State program. Model statewide Lifespan Respite 
Programs in Oregon, Nebraska, Wisconsin, Oklahoma, and most recently, 
Arizona, provide easy access to an array of affordable, quality respite 
services; ensure flexibility to meet diverse needs; fill gaps and 
address barriers; and assist with locating, training, and paying 
respite providers (Baker, L and Edgar, M, 2004). In anticipation of 
funding from the new Federal program, State Lifespan Respite 
Legislation is pending in Texas. Michigan passed Lifespan Respite 
legislation in 2004, but it has never been funded because of limited 
State dollars. The Delaware State Respite Coalition was successful in 
obtaining significant funds from a private foundation to begin 
implementing a statewide lifespan respite program this year.
    Each program has been adapted to meet individual State needs, but 
the defining characteristic of each is the statewide, coordinated 
approach to ensure respite services for all who need it. Many of the 
lifespan respite programs have established community-based networks 
that rely on the development of local partnerships to build and ensure 
respite capacity. These local partnerships include family caregivers, 
providers, State and federally funded programs, area agencies on aging, 
non-profit organizations, health services, schools, local business, 
faith communities and volunteers. These networks are the central point 
of contact for families and caregivers seeking respite and related 
support regardless of age, income, race, ethnicity, special need or 
situation. Providing a single point of contact for families to access 
respite is crucial to assisting families in helping themselves. 
Services typically offered by Lifespan Respite Programs are providing 
public awareness information to the community and building diverse 
respite partnerships, recruitment of paid and volunteer respite 
providers, coordinating respite related training for providers and 
caregivers, identifying gaps in services and creating respite resources 
by building on existing services, and connecting families with respite 
providers and payment resources.
    The State Lifespan Respite programs provide best practices on which 
to build a national respite policy. The programs have been recognized 
by prominent policy organizations, including the National Conference of 
State Legislatures, which recommended the Nebraska program as a model 
for State solutions to community-based long-term care (Fox-Grage, 
2001). The National Governors' Association and the President's 
Committee for People with Intellectual Disabilities also have 
highlighted lifespan respite systems as viable solutions (Friss-
Feinberg, 2004; President's Committee for People with Intellectual 
Disabilities, 2004). The 2005 White House Conference on Aging 
recommended enactment of the Lifespan Respite Care Act to Congress 
(2005 White House Conference on Aging, 2006).

Oregon

    In 1997, Oregon enacted the first State Lifespan Respite Care 
Program into law to address the multi-faceted barriers faced by 
families in accessing and paying for quality respite services 
regardless of age or disability. The Oregon Department of Human 
Services (DHS) is charged by State law to develop and encourage 
statewide coordination of respite care services. The Department works 
with community-based nonprofits, businesses, public agencies and 
citizen groups to identify gaps in services, generate new resources and 
develop community programs to meet the need. The Program offers 
technical assistance, works directly with 22 local Lifespan Respite 
Networks in 36 counties, and promotes the State respite agenda.
    While the Oregon Lifespan Respite program has not had staff or 
funding resources to conduct outcome-based evaluation, they have 
compiled personal testimonials from families expressing program 
satisfaction (Oregon Lifespan Respite Program, 2003). The Oregon 
Lifespan Respite program was identified by the Family Caregiver 
Alliance as one of five best practice models among 33 family caregiver 
programs surveyed in fifteen States (Friss Feinberg, Family Caregiver 
Alliance, 1999).

Nebraska

    With passage of the Nation's second State lifespan respite bill in 
1999, the Nebraska Health and Human Services System established the 
Nebraska Respite Network, a statewide system for the coordination of 
respite resources that serve the lifespan. Six regional entities are 
responsible for information and referral for families who need access 
to respite, recruitment of respite providers, public awareness, 
coordinating training opportunities for providers and consumers, 
quality assurance and program evaluation.
    Initially, Lifespan funds appropriated by the State legislature to 
fund the program were used to set up the structure for a statewide 
respite system. The NE State Legislature saw the success of the effort 
and appropriated additional funds to establish a respite subsidy 
program to help families pay for respite. The Respite Subsidy across 
the Lifespan is available to families who do not qualify for any other 
respite services. Families choose their own providers and set their own 
schedules. State funds are also used to expand new respite services in 
each Service Area.
    The six regional networks recruit respite providers, offer training 
for providers and consumers, provide information and referral, market 
respite availability and need, and match families with appropriate 
respite providers. More than 1400 new respite providers have been 
recruited since the program began. Network coordinators meet regularly 
with Medicaid Service Coordinators, representatives from Development 
Disabilities, Area Agencies on Aging, Independent Living Centers and 
the Early Development Network to identify gaps and barriers and to 
recruit providers as needed.
    A survey of family caregivers receiving respite was conducted by 
the Munroe-Meyer Institute in Nebraska. Caregivers were identified from 
a diverse group of State programs including the Aged and Disabled 
waiver, the Nebraska Alzheimer's Association and the Area Agencies on 
Aging. After just 1 year of Lifespan, 63 percent of the families with 
family members over 21 reported they were more likely to place their 
family member in out-of-home placements if respite services were 
unavailable. Respite was shown to reduce stress and feelings of 
isolation, possible precursors to poor caregiver health and in extreme 
cases, even abuse or neglect. Two-thirds (65 percent) of caregivers 
with family members over 21 reported decreased isolation once respite 
services were available (Jackson, 2001).

Wisconsin

    In 1999, Wisconsin became the third State to enact Lifespan 
legislation. The program was created through Wisconsin Act 9 (the 1999-
2001 Biennial Budget Act). The legislation provided for the Wisconsin 
Department of Health and Family Services (DHFS) to contract with an 
organization for the administration of lifespan respite care projects. 
The statewide nonprofit, the Respite Care Association of Wisconsin 
(RCAW), is charged with implementing the program. Funding of $225,000 
per year allowed RCAW to establish five Lifespan Respite Care pilot 
projects, one in each of the five Department of Health and Family 
Services regions of the State, with each project serving between one 
and three counties.
    Data from an Outcomes Evaluation Project conducted in collaboration 
with the ARCH National Resource Center for Respite and Crisis Care and 
the University of North Carolina at Chapel Hill, along with data from 
quarterly and annual reports, collected by RCAW, demonstrate that the 
Lifespan Respite Care model in Wisconsin is effective. The study found 
that provision of respite significantly reduced caregiver stress, 
stress-related health problems and social isolation. Furthermore, 
respondents reported reduced likelihood of institutionalization of the 
person with special needs and reduced likelihood of divorce. 
Respondents also reported that respite led to significantly improved 
relationships with the dependent family member and with other family 
members and increased opportunities to build friendship and support 
networks. Finally, reports from the Lifespan Respite Care projects 
demonstrated that they effectively leveraged the relatively small 
amount of funding received through the program to raise additional 
funds locally and through other grants, that they effectively 
integrated local, State, Federal and private sources of funds, and 
effectively coordinated provision of care regardless of age, 
disability, or other characteristic. The project serves as a ``One-stop 
Shop'' for respite care in their communities, replacing previously 
fragmented systems where families were forced to navigate an ``alphabet 
soup'' of funding sources and programs in order to obtain needed relief 
(RCAW, 2003).
    However, annual funding for the program has never exceeded 
$225,000. Unlike other State Lifespan Respite programs, Wisconsin's 
program is not statewide. While local lifespan respite programs are 
able to leverage additional dollars to help families pay for respite, 
there simply are not sufficient funds to establish programs in the 
remaining Wisconsin counties. In a recent statewide survey of 44 county 
health and human service agencies and Head Start programs conducted by 
RCAW, it was projected that referrals would increase 443 percent if the 
program was fully funded and staffed. (RCAW, October 2006)

Oklahoma

    The Oklahoma Respite Resource Network (ORRN), as the State's 
Lifespan Respite program is called, relies on an already existing 
statewide resource and referral system (OASIS) to link families to the 
program, to respite services and to training opportunities. The Network 
is a collaboration of 34 partners including three public agencies 
(Department of Human Services, the Health Department and the Mental 
Health Department), caregivers, advocacy agencies, private foundations 
and providers. The network has redirected almost $2 million in public 
and private funds to respite care in Oklahoma and is able to serve 
families across age and disability categories. The State's Family 
Caregiver Support Program is one of the networks most vital and 
supportive partners, having contributed almost $1 million to go 
directly to family caregivers of the aging population to help them pay 
for respite.
    The network was built on family support principles and focuses on 
consumer-directed respite. Caregivers are given vouchers to purchase 
respite care from anyone they choose and negotiate the rate of pay. The 
provider can be another family member, friend, next door neighbor, 
daycare center, home health agency, or a private provider. A survey 
completed in August of 2003 for the Oklahoma Respite Resource Network 
showed that 85 percent of the caregivers chose a respite provider from 
within their own natural support system (Moss, J, 2004). If families 
need help in finding a respite provider, or finding out which programs 
they might be eligible for, they can turn to the Oklahoma Respite 
Resource Network. If a family desires training for a respite provider 
of their choosing, the State will provide that as well. The Oklahoma 
model has flexible funding, so the State can find the most cost 
effective way to deliver services, and allow caregivers control over 
resources.
    This program currently serves approximately 2200 caregivers 
annually. The average cost for the respite vouchers has been between 
$5.62 and $5.87 per hour, compared with $12.80 to $26.50 per hour if 
the caregiver had chosen a provider from a private/public agency. This 
program has proven that caregivers are much more cost efficient with 
resources and that respite is a cost effective way to meet the needs of 
caregivers. In Oklahoma, caregivers are eligible for $400 in vouchers 
every 3 months. A 2003 survey found that 47.7 percent of the caregivers 
said this amount was adequate to meet their needs; 52 percent said they 
could use more, but added that they needed just another $100. This 
means that $1600-$2000 per year would meet the needs of 97.7 percent of 
the caregivers in Oklahoma (Moss, J, 2004).
    The ORRN survey found that the program has demonstrated benefits: 
88 percent of caregivers agreed that respite allowed their loved one to 
remain at home, 98 percent stated that respite made them a better 
caregiver, 98 percent said respite increased their ability to provide a 
less stressful environment, and 79.5 percent of caregivers said respite 
contributed to the stability of their marriage (Moss, 2004).

Arizona

    The Arizona Lifespan Respite Program was enacted into law in 2007 
and was allocated $500,000 annually for implementation. The Arizona 
Department of Economic Security is the lead State agency. Each of eight 
local Area Agencies on Aging are functioning as the local Lifespan 
Respite Program. Primary caregivers of individuals who do not currently 
qualify for other publicly funded respite services are eligible, 
including: Family Caregivers of: persons who are seriously or 
terminally ill, who do not currently qualify for hospice care; persons 
under 60 who have significant functional impairments, but are not 
eligible for disability services; persons with early cognitive deficit 
resulting in functional impairment, who have not yet received a 
``likely'' diagnosis of dementia; grandparents or relative caregivers 
less than 55 years of age caring for children 18 and younger; and 
veterans not qualified for Veteran Administration (VA) care (e.g., no 
service-related disability or income eligibility) who do not qualify 
for other services. Although income is not a disqualifying factor, 
services will be targeted to individuals in greatest economic and 
social need. Because funding is limited and in order to offer respite 
to the maximum number of caregivers, cost sharing will be required and 
is based on the care recipient's household income, beginning at 250 
percent above Federal Poverty Guidelines.

State Respite Coalitions

    If a State does not yet have a statewide Lifespan Respite Program, 
there may be a State respite coalition that can offer assistance and 
act as the central contact point for gathering initial respite 
information. At least 22 active State respite coalitions are affiliated 
with the ARCH National Respite Coalition and can provide varying 
degrees of assistance to family caregivers of veterans whether or not 
the veterans are eligible for VA benefits. Most of the coalitions 
provide networking, educational activities, and respite resource guides 
for providers and family caregivers. Some have developed training 
curricula and offer respite and family caregiver training across the 
State. A few, including Alabama, Iowa, and Tennessee Respite Coalitions 
have developed voucher systems to assist families in paying for respite 
and for promoting consumer choice. Consumer choice respite has been 
shown to offer the greatest satisfaction among families, who with the 
voucher in hand and acting as the employer, can select, train, hire and 
fire their own respite providers from their own natural support systems 
or from local agencies.

Lifespan Respite Care Act

    The Lifespan Respite Care Act was signed into law in 2006, but did 
not receive any funding until this current fiscal year. The initial 
funding of only $2.5 million has not yet been awarded by the 
Administration on Aging, but will probably be targeted to States for 
planning purposes only.
    The purpose of the Lifespan Respite Care Act is to expand and 
enhance respite services, improve coordination, and improve respite 
access and quality. Under a competitive grant program, States are 
required to establish State and local coordinated Lifespan Respite care 
systems to serve families regardless of age or special need, provide 
new planned and emergency respite services, train and recruit respite 
workers and volunteers and assist caregivers in gaining access. Those 
eligible would include family members, foster parents or other adults 
providing unpaid care to adults who require care to meet basic needs or 
prevent injury and to children who require care beyond that required by 
children generally to meet basic needs. Congressional intent requires 
that States ensure that respite is made more available and accessible 
regardless of age or disability of the care recipient (U.S. House of 
Representatives, Committee on Energy and Commerce, 2006).
    The Federal Lifespan Respite program would be administered by the 
U.S. Department of Health and Human Services (HHS), Administration on 
Aging, which will provide competitive grants to State agencies through 
Aging and Disability Resource Centers working in mandated collaboration 
with State respite coalitions or other State respite organizations.
    The NRC and its national, State and local partners are urging full 
funding ($71.1 million) in FY 2010. This will enable:

          State replication of best practices in Lifespan 
        Respite systems so that all family caregivers, regardless of 
        age or disability of the care recipient, will have access to 
        affordable respite, and will be able to continue to play the 
        significant role in long-term care that they are fulfilling 
        today;
          Improvement in the quality of respite services 
        currently available;
          Expansion of respite program capacity to serve more 
        families by building new and enhancing current respite and 
        crisis options, including recruitment and training of respite 
        workers and volunteers; and
          Greater consumer direction by providing family 
        caregivers with training and information on how to find, use 
        and pay for respite services.

Recommendations for Improving Respite for Family Caregivers of 
        Veterans:

        1.  VA should collaborate with State Lifespan Respite Programs, 
        State Respite Coalitions, universities and community colleges 
        to recruit and train respite providers and volunteers to assist 
        families caring for veterans, especially veterans with TBI, 
        post-traumatic stress, mental health conditions, spinal cord 
        injuries, and other polytraumas.
        2.  VA should collaborate with State Lifespan Respite Programs 
        or State Respite Coalitions to promote consumer direction and 
        administer respite voucher programs where available.
        3.  VA should reduce or eliminate mandatory copayments for 
        respite for all veterans.
        4.  VA should collaborate with State Lifespan Respite Programs 
        or State Respite Coalitions to work with family caregivers of 
        veterans to help them find, train and pay for respite services, 
        and to expand the range of respite options currently available 
        to these families.
        5.  VA should collaborate with State Lifespan Respite Programs 
        and State Respite Coalitions to provide public awareness and 
        education among family caregivers of veterans about the value 
        and availability of respite.
             Complete References Are Available Upon Request
    For more information, please contact Jill Kagan, ARCH National 
Respite Coalition at [email protected], by phone at 703-256-9578 or 
via regular mail at 4016 Oxford St, Annandale, VA 22003, USA. Visit 
www.archrespite.org/nrc.htm.

                                 
   Prepared Statement of Suzanne G. Mintz, President and Co-Founder, 
                 National Family Caregivers Association
    Mr. Chairman, Members of the Committee, thank you for this 
opportunity to speak on the critical subject of the needs of our 
veterans' family caregivers. My name is Suzanne Mintz. I am President 
and Co-founder of the National Family Caregivers Association (NFCA).
    NFCA is the Nation's premier organization for family caregivers. We 
reach across the boundaries of differing diagnoses, different 
relationships and different life stages to address the common concerns 
of all family caregivers. Our mission is to empower family caregivers 
to act on behalf of themselves and their loved one and remove the 
barriers to their health and well being. NFCA strives to meet its 
mission by providing family caregivers with education, support, and a 
public voice.
    I am not a veteran, nor is my husband Steven, but we both have much 
in common with the young veteran families of 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 sets 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 neurological 
disease that impacts function, and at times cognition. Many of these 
veterans' spouses serve as their family caregivers. In some cases their 
children may lend a hand. For those vets who are unmarried and don't 
have a significant other, their primary caregiver may be their parents, 
or perhaps a sibling, or good friend.
    I can tell you that these young veterans who are returning from war 
with physical or mental disabilities are frightened. They and their 
family members are going through a grieving process, all in their own 
way and probably on different schedules. Just at the time when they 
most need to be pulling together, they are all dealing with their own 
reactions 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. Those with the most extensive 
physical and/or mental disabilities need these services the most.
    The VA Health Administration (VHA) and the VA Benefits 
Administration (VBA) have put together an extraordinary number of 
programs to support these families, some of them specifically aimed at 
family caregivers. There are 13 in all, and this doesn't count the 
eight programs currently underway through the VA's Pilot Programs in 
Caregiver Assistance, a grant initiative designed to develop new 
programs to expand and improve caregiver assistance services. I am 
proud to say that the Stratton VA in Albany, New York has one of these 
grants and is working with NFCA to compare the impact of NFCA's 
Communicating Effectively with Health care Professionals curriculum to 
standard VA care. Results of this study will be available in the fall.
    The VA's 13 caregiving-related programs can be grouped together in 
a number of categories. My colleagues at the Veterans' Administration 
who are testifying here today are far better versed in the details of 
these programs than I and will be talking about them during their 
testimony; I want to focus here on how these categories of programs, 
and the specific programs themselves fit into the intricate web of the 
lives of caregiving families.
    It is important to note at the outset that as good as these 
programs are, they are only available to a small proportion of veteran 
families. As good as these programs are, they do not reach all the 
veterans and families who are in need of these services. The VA should 
enlarge the service areas for these programs so they benefit more 
veteran families.
    There are two different types of respite programs, in recognition 
of the need for family caregivers to have some time for themselves away 
from the responsibilities of caregiving. One program provides for home-
based respite; the other in institutional settings. You and I, and I 
would venture to say, all those in this room who are employed receive 
paid vacations. Family caregivers do not. Nor do they receive other 
benefits for that matter. Their toil can go on 24/7 365 days a year. 
For these family caregivers respite isn't a luxury. It is a necessity 
to maintain health and well being and needs to be available to as many 
family caregivers as possible, but especially those with the most 
intensive caregiving responsibilities.
    There are two home and community-based services programs in 
recognition of the fact that most long-term care is provided by family 
caregivers, not by institutions. In fact 80 percent of all long-term 
care is provided by families and friends in the community. Providing 
access to adult day services gives family caregivers the opportunity to 
go to work, visit their own doctor, and take care of other 
responsibilities and needs while knowing their loved one is safe. With 
so many of these new veterans in their twenties and thirties, the VA 
should consider ways to tailor adult day programs for this demographic, 
as this population's needs are far different from those of older vets.
    There are three different programs to help veterans who need 
accessible and disability-friendly housing. Many families need ramps, 
grab bars or major renovations. Most people in these circumstances 
prefer to stay in their homes, but these modifications can be quite 
costly. Assistance with these modifications is a critical service for 
these families and is a great benefit for them.
    One particularly outstanding program provides a generous grant to 
purchase an accessible vehicle. To give you some idea of the cost that 
can be involved in such a vehicle I frequently tell people that I drive 
a Mercedes Dodge. The price of a van with the conversion added on does 
indeed add up to the price of a lower-end Mercedes. The cost of these 
vehicles is strictly out of pocket for those of us with private 
insurance. This $11,000 payment is indeed a wonderful VA benefit 
because having easy access to transportation permits a level of 
normalcy and freedom that cannot be achieved any other way. If my 
husband and I didn't have an accessible minivan it would be very 
difficult for him to continue to work, go to Baltimore twice a week for 
an intensive physical therapy program and for us to have a social life. 
In short, to be participants in the kind of life that able bodied 
people take for granted.
    The VA has great programs to support caregiving families. The 
challenge is to make them available to as many veterans as possible, 
without unnecessary conditions, as quickly as possible, with top 
priority placed on quality and safety. It is also crucial to, recognize 
that flexibility is perhaps the greatest virtue that any program for 
caregiving families can have. The more services and programs that are 
built on the ``money follows the person'' concept, with few 
stipulations of exactly where and from whom services need to be 
purchased and provided, the easier it will be for these families to 
regain control of their lives.
    The remaining four programs fit under the umbrella of health care. 
One that assists families needing to travel away from home for medical 
treatment, like the vehicle grants, shows the VA's recognition of the 
emotional, physical, and financial costs associated with getting 
places. The other three are truly part of the health care experience 
for chronically ill or disabled persons, and these are the three I want 
to comment on more fully because of their importance to the primary 
concerns of veterans and their loved ones--the quality of the health 
care they receive and the ease of obtaining it.
    The three programs I am referring to are home-based primary care, 
bowel and bladder care, and homemaker/home health services. These 
programs address core needs of veterans with extensive disabilities and 
the needs of their family caregivers. These are the families with the 
greatest need of a comprehensive and holistic approach to their care 
over the ensuing years of their lives.

Home Based Primary Care

    Home-based primary care saves time and money, minimizes the health 
care risks to the patient by minimizing the introduction of pathogens 
into their environment, and it eases the physical, financial, and time 
burden on patient and caregiver that comes with having to physically 
travel to an appointment. This program is not necessary for all 
veterans of course, but it is for those with multiple chronic 
conditions and significant disabilities.
    The Independence at Home Act currently before Congress recognizes 
the importance of home-based primary care and would bring these 
valuable services to designated Medicare beneficiaries.

Bowel and Bladder Care Initiative

    The bowel and bladder care initiative permits a veteran to have 
anyone of his/her choosing receive training from VA personnel to be 
able to provide bowel and bladder care services. This program is an 
example of the type of flexibility and logical thought that is 
critically important to families as they try to develop a new normalcy. 
Catheterizing someone's bladder is not complicated and is no more than 
a 10-minute exercise. If the rules required it be done by a visiting RN 
it would become a major undertaking in terms of scheduling, health care 
processes, and paperwork. Letting nature take its course and allowing 
families be able to deal with these matters as they see fit in the 
course of their day, just as those of us without bowel or bladder 
problems do, provides the closest situation to normalcy that there is, 
and this needs to be the primary goal for these families and all VA 
families touched by war.

Homemaker and Home Health Services

    Finally homemaker/home health services address the daily needs of 
disabled individuals by providing assistance with instrumental 
activities of daily living, such as preparing meals, paying bills, and 
activities of daily living such as dressing, transferring and bathing 
etc. In the non-VA world these services cost families thousands and 
thousands of dollars a year, at least for those who can afford to pay 
for help. In those families that can not pay for these assistants, 
caregivers are more likely to experience burn-out and other negative 
impacts of caregiving. This is a very important program.
    Currently, however, this program specifies that services must be 
provided by a homecare agency or a family member who becomes an 
employee of such an agency. This requirement hinders the positive 
impact of the program by blurring the line between family caregiver and 
provider. Training and support for the designated family caregiver can 
build their confidence and help them be better prepared to provide 
these services, but forcing a family caregiver to become an employee of 
an agency as a prerequisite for getting funds for these services 
ignores the differences in the roles of family and provider caregivers, 
and could result in a family caregivers not being allowed to help their 
loved one due to some infraction of the employer's rules. As with all 
programs for this population erring on the side of flexibility and 
trust makes the most sense. This program should be modified to provide 
the same combination of training and freedom that is provided in the 
bowel and bladder program.

Community Care Teams

    Having addressed the family caregiver programs associated with the 
VHA and VBA, I want to comment now on what I believe is by far the most 
important service that can be provided to chronically and seriously 
disabled veterans and that is the provision of a life-long community 
care team that works with the family on both an as-needed and regular 
check-in basis to help them manage their everyday lives and ward off 
crises before they occur. A sense of isolation and lack of ability to 
navigate the system and public programs are among the major 
difficulties that caregiving families' face. A tethered relationship 
along the lines of the community care teams described in Senate Finance 
Chairman Max Baucus' White Paper provides a framework for such a 
service.
    The care team concept brings together all of the services needed 
for an individual that have been noted in their initial care plan. As 
the person's situation changes, it prevents information from falling 
through the cracks. Extending such a program to designated veterans and 
their family caregivers for as long as they need it, potentially for 
the rest of their lives, is the missing link for these families. It is 
not the role of the family caregiver to manage this coordination and 
bring together the health care and social services that they and their 
loved one need. It is the job of trained professionals who are educated 
to manage this process and work closely with their assigned caregiving 
families. The overriding reason for such a program is to prevent unsafe 
and careless care. Care team programs with Medicaid beneficiaries in 
North Carolina, Vermont and elsewhere have also been shown to save 
money. This concept is further explained in a one page document I 
recently prepared. The document focuses on the general family caregiver 
population, but its principles are transferrable to the VA. It is 
appended to this testimony.
    The VA is ahead of the curve when it comes to having successful 
care coordination programs and electronic medical records, but 
ultimately health care comes down to people doing what they are 
supposed to do in the most effective and efficient way possible. 
Unfortunately this isn't always the case. When care isn't all it could 
be for the most disabled vets the results can be catastrophic. 
Providing care teams for these veteran families is something the VA 
should seriously consider. Given the systems and programs the VA 
already has in place, such as electronic medical records and its home-
based care monitoring program, the navigation, coaching, and 
coordinating services that would be a critical part of a care team's 
function will be that much easier to implement.
    I want to thank the Committee again for the opportunity to present 
my views on the care needs of family caregivers of veterans. It is a 
complex topic. I have focused my remarks on the new generation of 
veteran families, but the complex and specialized needs of senior 
veteran families, especially those in the rapidly growing category of 
85+ cannot be overlooked.
    The VA faces a number of challenges as it strives to meet the needs 
of these diverse populations. It will require the energy and dedication 
of all its employees, from those providing janitorial services, up to 
those who perform brain surgery, and everyone in between to make sure 
its obligations are met. Unfortunately there are gaps in the VA safety 
net that must be addressed.
    We've all heard about the horrible conditions at Walter Reed, not 
only the physical conditions, but perhaps more importantly the 
procedural ones that have made veterans wait an inordinate amount of 
time for their claims to be processed and in many cases be denied 
services. Just last year the VA's Office of the Inspector General 
reported that 76 percent of the claims of seriously disabled Iraq and 
Afghanistan veterans did not meet the 30-day processing goal, and 20 
percent exceeded 181 days. In 2005, the VA Regional Office reported 
that even those veterans assigned case managers didn't fare much 
better. The variance was only 3 percent with those having access to a 
case manager not meeting the processing schedule 74 percent of the 
time, versus 77 percent of the time for those without a case manager.
    In addition to slow processing times, we know that many vets, 
especially those with PTSD were denied benefits that would have 
provided them with getting monthly disability payments and lifelong 
health care for themselves, their spouses, and dependent children (DoD 
action on 10/14/08). It is critical that these issues, and ones like 
it, are resolved as quickly as possible. No matter how good the family 
caregiver programs are, they are irrelevant if vet families can't 
access them and if they can't be provided in the safest, most 
respectful, and flexible way possible. This needs to be the VA's top 
priority.
    Once again thank you for this opportunity.
         Support Care Coordination Teams and Family Caregivers
    Caregiving families dealing with significant medical issues need to 
be assured that all patient information is coordinated across providers 
and care settings to minimize the potential for error and poor quality 
care. Currently coordination is left to family caregivers to provide.

The Issue

    More than 50 million people provide care for a chronically ill, 
disabled or aged family member or friend during any given year. 
Patients with chronic conditions have health care and social needs that 
require coordination among many health care providers across different 
health care settings and across the home and community-based service 
networks, as well. When patients transition from one health care 
setting or provider to another, crucial information is often lost or is 
not properly communicated to other members of the health care team.
    If we are to achieve comprehensive care and support for all those 
with chronic conditions, our system must be person-centered and family-
focused and not provide solely for the treatment of a specific disease, 
but rather as a way to achieve physical, emotional, and social well-
being, while also returning economic savings to Medicare. Today family 
caregivers are the primary providers of care for persons with chronic 
conditions and disabilities. Proper coordination between providers and 
across all settings requires specialized knowledge as well as continual 
effort. This is a job for health care and social service professionals, 
not family caregivers, the majority of whom have jobs of their own in 
addition to their caregiving responsibilities.

The Solution

    Providing continuity during these transitions can decrease medical 
errors, reduce re-hospitalization and use of emergency rooms, improve 
patient's satisfaction, and ultimately reduce health care costs. 
Community Health Teams have proven to be an effective model to achieve 
cost savings and improve quality of care in the Medicaid context. These 
programs utilize a strong focus on coordination and continuity of care 
across settings and provide a good model for implementing similar 
programs for Medicare's most complex patients.
    A member of the team would stay in contact with designated patients 
and their primary caregivers so they may assist that patient/caregiver 
during periods of crisis, or transition. The team would steer the 
family through the health care/social support maze by being their 
advocate with the various entities involved, getting them information 
so they can better make decisions, providing them with support, and 
ensuring that coordination is comprehensive, continuous, and holistic 
so that patient safety, high-quality care and the health and well-being 
of family caregivers and the Medicare or Medicaid beneficiary is 
achieved.
    Care Coordination and Health Care Reform: In upcoming health care 
reform legislation, NFCA recommends investing in care coordination 
teams comprised of nurses, nutritionists, social and mental health 
works, and others as deemed appropriate, that are assigned to patients 
and their primary family caregiver. This will achieve the important 
health reform objective of improving quality of care, promoting 
efficiency, and lowering costs.

                                 
       Prepared Statement of Mark S. Heaney, President and Chief
     Executive Officer, Addus Health Care, Inc., Palatine, IL, and,
           Home Care Aide Section Representative, and Member,
         Board of Directors, National Association for Home Care
                           and Hospice, Inc.
    The National Association for Home Care and Hospice, Inc. (NAHC) 
respectfully submits this statement to the Subcommittee on Health of 
the Committee on Veteran's Affairs of the U.S. House of 
Representatives. The statement relates to the Subcommittee hearing, 
``Meeting the Needs of Family Caregivers of Veterans.'' NAHC 
understands that the Subcommittee is considering bills that expand the 
Veterans Administration health benefits to include financial support 
for family caregivers providing care to veterans in their homes.
    NAHC is the largest trade association representing the interests of 
home care and hospice providers in the United States. In that capacity, 
NAHC represents the vast majority of home health agencies participating 
in VA home care programs. The NAHC Membership includes home health 
agencies and home care providers in all of the states and U.S. 
territories, small and large agencies, rural and urban providers, 
nonprofit and proprietary organizations. These agencies and providers 
deliver home care to over 12 million people of all ages each year. In 
doing so, the agencies and providers work closely with family 
caregivers as often the family caregiver is the backbone in the care 
delivery. Although the vast majority of family caregivers provide care 
without compensation, home care agencies have, on limited occasions 
employed these caregivers or supplied a fiscal agent role for those 
caregivers directly employed by the individual under their care. As 
such, NAHC is uniquely capable of addressing the issues that exist 
regarding the provision of home care services through outside agencies 
and family caregivers.
    The family caregiver is instrumental to many home care patients/
clients as outside caregiving is generally part-time or intermittent 
rather than a full-time or live-in service. Such full-time care is 
often privately purchased or through one of the few home care programs 
sponsored by a State Medicaid program. NAHC strongly supports efforts 
in Federal or State programs that are designed to provide training, 
respite opportunities, and other supportive functions to family 
caregivers. However, the decision to provide remuneration to family 
caregivers is outside the purview and scope of NAHC as it represents a 
societal choice that balances the propriety of and need for supplying 
compensation with traditional family values wherein such caregiving is 
an uncompensated family responsibility.
    Nevertheless, given the Subcommittee's present consideration of 
bills that would provide a means to tender compensation to family 
caregivers of selected veterans in need of care to remain in their own 
homes, NAHC can offer a number of recommendations that are borne out of 
the decades of experiences that home care agencies have had with both 
paid and unpaid family caregivers. In many respects, these experiences 
mirror those where the caregivers are unrelated. In either situation, 
NAHC believes that adequate safeguards must be established in order to 
protect the patient, the caregiver, and the funding program.
    The structural weaknesses in direct care services programs (with or 
without family caregivers) need to be addressed in basic mechanisms of 
integrity and accountability. The steps set out below address essential 
minimum-level elements of accountability.

    All federally funded directed care programs should be structured 
to:

        A.  Ensure quality of care
        B.  Maintain the personal security of the care recipient
        C.  Assure protections and rights for workers
        D.  Achieve efficiency and efficacy in care with the avoidance 
        of waste
        E.  Pay only for bona fide care

    To achieve the basics of accountability, NAHC recommends that all 
self-directed care programs include the following:

         1.  A professional care manager must be assigned to each 
        recipient with responsibilities for ongoing monitoring, support 
        and supervision of care.
         2.  A care plan should be established and care authorized to 
        meet the consumer's needs without regard to the mode of care 
        delivery.
         3.  Oversight and audit systems must be employed for periodic 
        review of care plans, the provision of services, and the 
        qualifications of caregivers.
         4.  Care should be adjusted periodically by the case manager 
        to ensure that the authorized care is consistent with the 
        continuing changing needs of the recipient.
         5.  Consumers must be evaluated to ensure that they are 
        independently able and willing to utilize direct care. For 
        those consumers who are unable or unwilling to self-direct, 
        alternative agency-model care should be available.
         6.  Caregivers must meet minimum standards of training, 
        competency, and health screening verified by an objective 
        entity.
         7.  Caregivers should be subject to full and periodic criminal 
        background checks prior to and during employment.
         8.  Personal care aides should be afforded all the legal 
        rights and protections granted to all workers regardless of any 
        relationship to the person under their care.
         9.  A grievance/complaint system should be created for 
        consumers and workers to address all problems.
        10.  Fiscal management safeguards must be developed to ensure 
        that payment for services is made to the proper party, in a 
        proper amount for services actually provided.
        11.  These safeguards should apply to all consumers and workers 
        regardless of the mode of care delivery.

    The risk of harm is high to a very vulnerable population of 
disabled veterans in need of personal care support for basic activities 
of daily living. An unstructured and unsupervised program of self-
directed care using paid family caregivers where the consumer is the 
``responsible'' employer can lead to:

          Improper care
          Physical abuse
          Mental abuse
          Exploitation
          Predatory behavior by caregivers
          Benefit fraud
          Inadequate service delivery or utilization
          Over-utilization

    As has been stated before, all home care programs carry these 
risks. However, direct care programs generally lack any structure or 
process for protecting patients, caregivers, and the fiscal integrity 
of the funding. The VA should develop a compensated family caregiver 
program only if it also includes the basic safeguards suggested herein.

Historically, direct care programs have been initiated without:

          Established standards of care
          Regular continuous monitoring of care and the 
        consumer's safety
          Evaluation of consumer's ability or willingness to 
        self-direct care
          A choice for consumers to self-direct or not
          Verification that services provided are limited to 
        those called for by the caseworker
          Verification that consumers actually receive the care 
        they are authorized
          Any structural effort to reduce dependency on 
        services
          Coordination with other government funded health 
        services already being provided to the consumer such as 
        hospitalization, rehabilitative care, nursing home care, and 
        Medicare home health services, resulting in duplicate care and 
        cost to the government
          Criminal background checks of caregivers with 
        consistent standards for what constitutes a ``background 
        check''
          Licensing or certification of caregivers to verify 
        they are qualified to provide the care they deliver
          Basic caregiver training standards
          Ongoing competency and performance assessment of 
        caregivers
          Cost containment controls

    These risks are not limited to circumstances where the caregiver is 
a stranger to the consumer, whether selected out of a government-run 
registry, or more likely, from a classified ad. Many recipients receive 
their care from family members or friends who are paid directly by the 
government. Very often, these friends and family members make the 
decision that the consumer will ``self-direct'' even though the 
consumers themselves are incapable of making important decisions on 
their own. As a paid caregiver, these persons have a financial stake in 
the consumer's continuing need. Additionally, in cases where the 
consumer is frail, afraid or cognitively impaired, it is very often the 
paid caregiver who attests to the consumer's ``satisfaction'' with 
their care. Studies show that the greatest risk of physical, financial 
or emotional abuse to the frail elderly actually comes from family.
    Two examples highlight the risks attendant to the operation of a 
direct care program in the absence of adequate safeguards, both 
established and utilized.

Washington State

    In 1984, Linda A. David, then 36, applied for personal care 
services benefits through her husband. The alleged basis for 
eligibility was continued physical deterioration resulting from 
Multiple Sclerosis. A physician who examined Ms. David on behalf of the 
State raised doubts about the alleged diagnosis and expressly warned 
the State that the individual may have been subjected to longstanding 
abuse and recommended an evaluation of the home environment. Despite 
this warning, the State simply approved the application and began 
issuing payments to the spouse to provide personal care. Over the 
years, there were repeated warnings of suspected abuse from the State-
hired physician.
    The State was required to conduct periodic assessments of client 
eligibility and need. State rules mandated in-home evaluations at least 
annually. Between 1984 and 1987, the State visited the client on a few 
occasions, but only in the presence of her caregiver spouse. Starting 
in 1987 until 1997, no in-home evaluations were conducted by the State. 
The client's home was isolated from other people. It was a boat moored 
200 feet offshore where the client had no human contact other than her 
husband. Throughout this time, the State paid Mr. David under the self-
directed personal care services program run by the State.
    In January 1997, Linda A. David was liberated by the county fire 
department. At that time she was emaciated and covered with dog feces, 
vomit, and urine. The smell was described as ``rotting flesh.'' Ms. 
David had multiple untreated major bone fractures and blindness due to 
untreated glaucoma and retinal hemorrhaging. Her ears were deformed and 
cauliflowered from beatings. She was permanently unable to ambulate in 
any way. She was brain damaged as well.
    In 2001, the State of Washington Department of Health and Human 
Services settled a lawsuit based in negligence regarding the personal 
care services program for $9 million.

TENNESSEE:

    The Tennessee Medicaid Fraud Control Unit announced in February 
2007 that the mother of a mentally retarded son pleaded guilty to theft 
of funds used to pay for the in-home care of her mentally retarded son 
from TennCare, the State's Medicaid program, through a TennCare waiver. 
The woman allegedly billed for care using names and Social Security 
Numbers of dead people, people who provided services under other 
contracts, and people she knew but had no involvement with her son.
    The use of family caregivers does not immunize patients or funding 
programs from the risks inherent in a publicly funded home care 
program. In fact, the familial relationship may add risks due to the 
emotional and trusting nature of the connection. At the same time 
adequate safeguards can be established that control or minimize these 
risks. However, NAHC suggests that the issue is not whether safeguards 
are necessary, but rather how to establish and employ the safeguards.

Options for the VA

    There are a variety of ways that direct care programs can operate 
where reasonable safeguards have been established to address the risks 
presented.

        1.  The VA can assume the role of ``employer'' of the family 
        caregiver, thereby meeting all of the employer responsibilities 
        including tax withholding, unemployment compensation, workers' 
        compensation, and payroll management. As an employer of the 
        worker, the VA can share supervision and direction of the 
        caregiving with the veteran. The VA would be directly 
        responsible for training and oversight of the caregiver.
        2.  The VA could utilize a ``fiscal agent'' model that has the 
        agent handle all the employer administrative responsibilities 
        while not assuming them. The family caregiver remains the 
        employee of the veteran. This model could also utilize a third 
        party for a care management and oversight role. The third party 
        could provide caregiver training and resolve any conflicts that 
        may surface between the patient and family caregiver.
        3.  The VA could establish a program wherein the family 
        caregiver is employed by a home health agency. This method 
        would relieve the veteran of employer responsibilities and 
        establish day to day oversight of care at the agency. NAHC's 
        investigation indicates that few home health agencies would be 
        willing to employ family caregivers. Agencies indicate that it 
        would be difficult for an employment status to be maintained 
        because of the familial connection of the caregiver. Among the 
        reasons expressed by agencies is their belief that the 
        caregiver would not be objective in their employee status, 
        given their relationship to the patient. Further, it has been 
        expressed that an employed family caregiver would not accept a 
        subordinate position to the agency management, a necessary 
        element to effective supervision and oversight.
        4.  The VA could continue to utilize the services of non-family 
        caregivers from home health agencies. Generally, the VA has 
        used either Medicare certified or State licensed home health 
        agencies that meet comprehensive standards designed to deliver 
        quality care and ensure patient rights. Currently, there are 
        over 9,800 Medicare certified home health agencies throughout 
        the Nation. Over 98 percent of all zip code areas have service 
        from at least two home health agencies.

    Each of these models still need to operate with the elements of 
integrity set out above, including caregiver credentialing and 
competency testing and third party care management.

Conclusion

    NAHC is ready to work with the Subcommittee on whatever direction 
it chooses to take. No home care program can be effective unless it 
considers the role of family caregivers. NAHC applauds the 
Subcommittee's recognition of both the value and seriousness of family 
caregivers. In the end, the patient's interests in quality of care and 
a safe home environment are paramount. Thank you for the opportunity to 
present this testimony.

                                 
          Prepared Statement of Madhulika Agarwal, M.D., MPH,
 Chief Officer, Patient Care Services, Veterans Health Administration,
                  U.S. Department of Veterans Affairs
    Mr. Chairman and Members of the Subcommittee, thank you for 
providing me this opportunity to discuss the Department of Veterans 
Affairs' (VA's) programs and support of family caregivers. I am 
accompanied today by Dr. Lucille Beck, Chief Consultant for 
Rehabilitation Services, Veterans Health Administration (VHA), Dr. Tom 
Edes, Director of Home and Community-Based Care, Office of Geriatrics 
and Extended Care, VHA and Thomas J. Kniffen, Chief, Regulations Staff, 
Compensation and Pension Service Veterans Benefits Administration. 
Caregivers deliver essential services to seriously injured Veterans and 
servicemembers and VA continues to support these compassionate 
providers as they help our wounded, ill and injured heroes regain and 
maintain health. VA shares Congress' interest in providing the 
necessary support to caregivers, particularly when family members of 
Veterans assume that role to tend to a loved one. We are very 
enthusiastic about working with Congressional Members and staff to 
strengthen VA's already robust programs.
    My testimony will describe how VA supports caregivers, including 
discussions about VA's current programs and the population needing 
caregiver services, VA's eight ongoing caregiver pilot programs, 
definitions of eligible caregivers, information on caregiver training, 
travel benefits and compensation for caregivers, and medical care and 
counseling for caregivers. I will then discuss another important 
element of VA's caregiver programs: our respite care services. While VA 
is currently undertaking a comprehensive reassessment of caregiver 
programs, this statement will elaborate on our current approaches and 
raise principles for possible improvements. We look forward to working 
with Congress to identify the most feasible and effective caregiver 
program improvements.

Caregivers: Current Programs and Populations

    VA currently contracts for caregiver services with more than 4,000 
home health and similar public and private agencies approved by the 
Centers for Medicare and Medicaid Services (CMS) or through State 
licensure. The contractor trains and pays the caregiver directly, 
affording them liability protection while overseeing the quality of the 
Veteran's care. VA provides remuneration pursuant to agreements with 
the home health agencies, thus in some cases compensating family 
caregivers indirectly. Importantly, VA also ensures that these home 
health agencies meet and maintain training and certification 
requirements specific to caregivers. This model has several advantages. 
First, it does not divert VA clinical resources from the treatment of 
Veterans. Second, it allows direct interaction between the Veteran and 
the Home Health Agency or State Area Agency on Aging regarding 
caregiver arrangements and satisfaction. Third, these agencies have 
expertise in training and certifying home health aides, including 
family members, and many operate in rural communities.
    VA knows these services are important to Veterans and families 
alike. To determine the population affected, VHA conducted a survey of 
Veterans Integrated Service Networks (VISNs) and VA medical centers in 
April 2009 to determine how many family caregivers have been referred 
to home care agencies for training, certification, and employment as 
home health aides and as a paid caregiver for a Veteran. In Fiscal Year 
(FY) 2008, VA referred 233 family caregivers for training and 
certification in homemaker/home health aide services, which represents 
approximately 5 percent of all home care referrals. Twenty-nine percent 
of family caregivers were a Veteran's spouse. In the first 7 months of 
FY 2009, 168 family caregivers were referred to home care agencies for 
training and certification; of this group, 26 percent were spouses. At 
the time of the survey, the three VA medical centers participating in 
the Veteran Directed Home and Community-Based Services Program reported 
70 family caregiver referrals (17 percent of whom were spouses) through 
the first 7 months of the fiscal year. VA favors the current system of 
eligibility for caregiver services that retains flexibility to allow us 
to provide benefits to Veterans who are unable to live independently, 
whether their specific condition is physiological, psychological or 
neurological in nature.

VA administers many different programs related to caregivers:

          VA recently has begun contracting for home care 
        services with local Area Agencies on Aging (AAA) through the 
        Veteran Directed Home and Community-Based Services Program. We 
        work in close partnership with the administration on Aging to 
        support and expand this program. Under this program, the AAA 
        works with the Veteran to purchase caregiver services. The 
        Veteran may choose a family member, friend or neighbor to 
        deliver care, or may choose to have some care provided by a 
        traditional agency. This program allows Veterans to remain in 
        their community, and local VHA facilities cultivate 
        relationships with the local AAA to pay for case management, 
        financial and other support for Veterans. This program 
        currently operates in 15 VA medical centers, and VA plans to 
        expand to additional sites in the future.
          Temporary Lodging for caregivers and family members 
        is provided in Fisher Houses, VA-run hoptels, and non-VA 
        lodging facilities, such as hotels or motels. Temporary lodging 
        may be furnished when the Veteran travels to a VA health care 
        facility for care or a Compensation & Pension examination. VA 
        maintains this program directly and with support from Veterans 
        Service Organizations, other volunteer agencies, and donations 
        from the community. This benefit, provided at no cost to the 
        family member or other person accompanying the Veteran who 
        provides the equivalent of familial support, is provided on a 
        first-come, first-serve basis. As a condition of receiving 
        temporary lodging, this benefit is limited to those who reside 
        either 50 or more miles, or at least 2 hours from the VA health 
        care facility. In 2008, the VA Fisher House Program served 
        5,949 families.
          Additionally, although VA programs such as Aid and 
        Attendance and Special Monthly Compensation do not provide 
        payments to caregivers, these programs do provide direct 
        payments to qualifying Veterans who require assistance with 
        activities of daily living, reside in nursing homes, are 
        bedridden, or are blind. Housebound benefits are also available 
        to qualifying Veterans who are permanently disabled and 
        substantially confined to their homes.
          VA also provides a payment of up to $100,000 to 
        Veterans who sustain certain injuries through the traumatic 
        injury protection offered under the Servicemembers Group Life 
        Insurance Traumatic Injury Protection Program (TSGLI). This 
        helps enable Veterans' loved ones, who may also provide 
        caregiver support, to be with the Veteran during recovery.

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

Eight Caregiver Pilot Programs

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

        1.  Memphis, TN: Resources for Enhancing Alzheimer's Caregiver 
        Health (REACH VA) is currently piloted in 24 home-based primary 
        care programs across the country in 15 states. This program is 
        specifically for caregivers of Veterans diagnosed with dementia 
        who are enrolled in home-based primary care. REACH VA provides 
        an intervention translated from a similar, evidence-based 
        National Institutes of Health initiative that provides 
        education, support and skills building to help caregivers 
        manage both patient behaviors and their own stress. In October 
        2008, REACH VA won the Rosalyn Carter Institute Leadership in 
        Caregiving Award.
        2.  Gainesville, FL: Caregivers are taking part in a Transition 
        Assistance Program, which provides skills training, education 
        and supportive problem solving using videophone technology for 
        new stroke patients or patients with stroke-related 
        disabilities and their caregivers. The coordinating site is in 
        Gainesville, while actual pilots are underway at the Stroke 
        Centers of Excellence in Houston, TX and San Juan, PR.
        3.  Dayton/Cincinnati, OH: VISN 10 has established a 24/7 
        hotline titled, ``Caregiver Advocates,'' who are assigned to 
        coordinate between VA and community providers in home-based 
        primary care programs in Dayton and Cincinnati, OH. Caregiver 
        Advocates assist caregivers in identifying, accessing, and 
        coordinating existing and augmented caregiver resources and 
        providing therapeutic interventions to the caregiver. This 
        pilot also provides additional hours for adult day health care, 
        in-home respite and inpatient respite. This program is designed 
        for caregivers of frail imperiled Veterans at high risk for 
        institutionalization.
        4.  Long Beach, CA: This pilot works with a community coalition 
        to provide interventions that support caregivers for Veterans 
        with TBI, post-traumatic stress disorder (PTSD) and dementia 
        across the State of California using telehealth, web, telephone 
        and video tele-conferencing. Participation in this program is 
        currently limited to Veterans with TBI, PTSD, or dementia. 
        Interventions are provided by the VA Cares Caregiver Center, 
        California Caregiver Resource Centers, the ``Powerful Tools'' 
        Caregiver Training program, and Stanford University's Internet-
        based Caregiver Self Management Program.
        5.  Albany, NY: This pilot converted a 3-hour workshop 
        developed by the National Family Caregivers Association, 
        ``Communicating Effectively with Health Care Professionals'' 
        into a DVD and manual. Face-to-face workshops have been 
        implemented to offer an additional delivery method. If this 
        program proves effective, VA may be able to add this content to 
        the My HealtheVet Web site to promote further distribution.
        6.  Atlanta, GA: This pilot uses a model telehealth program 
        adapting ``Health Buddy'' devices, which are existing 
        technologies used by VA, to provide help and emotional support 
        for caregivers living in remote areas or who cannot leave the 
        Veteran by himself or herself. This program is designed for 
        caregivers of Veterans who are 60 years old or older and who 
        have at least one chronic illness that requires assistance with 
        an activity of daily living or an instrumental activity of 
        daily living. To participate, the caregiver must live with the 
        Veteran.
        7.  Miami-Tampa, FL: Tampa's existing respite program is being 
        expanded to provide 24-hour in-home respite care for temporary 
        relief to caregivers (up to 14 days per calendar year) and 
        emergency respite in local assisted living/medical foster care 
        facilities. The Miami program provides and coordinates 
        comprehensive community-based services, including respite, home 
        companions, adult day care, and use of an emergency response 
        system for high risk Veterans.
        8.  VA Pacific Islands Health Care System: The Medical Foster 
        Home concept is utilized to provide overnight respite for 
        Veterans in areas where no other inpatient respite options are 
        available, particularly in remote and rural service areas. 
        Currently, overnight respite can only be provided at the VA 
        Pacific Islands Health Care System Center for Aging in Honolulu 
        or in contract nursing homes located on Oahu.

Defining Caregivers

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

Caregiver Training

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

Travel Benefits

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

Medical Care and Counseling for Caregivers

    VA is authorized to provide medical care to caregivers on a 
humanitarian basis in an emergency situation. By law, VA is required to 
seek reimbursement for hospital care and medical services provided to 
individuals who are not otherwise eligible for these benefits. This can 
impose a significant hardship on some caregivers if they have no health 
insurance or coverage. VA is evaluating the humanitarian care 
assistance provided to caregivers.
    A related issue involves the provision of counseling and mental 
health services for caregivers. In 2008, Congress expanded VA's 
authority to provide mental health care and counseling to the Members 
of the immediate family, the legal guardian of a Veteran, and the 
individual in whose household such Veteran certifies an intention to 
live. This care may only be provided as necessary in connection with 
the treatment of the Veteran. The contracting home health agency often 
has support systems available. A number of caregiver and family support 
groups also meet with family members at VA facilities to address 
caregiver burnout or depression. In so doing, they help address the 
individual counseling needs of family members that fall beyond VA's 
existing caregiver authority. VA Vet Centers are also available to 
provide marital and family counseling as it relates to conditions 
connected with the Veteran's readjustment to civilian life. Respite 
care, which I will now address, is also available.

Respite Care Programs

    Respite care is an essential complement to caregiver benefits; it 
temporarily relieves the spouse or other caregiver from the burden of 
daily care for a chronically ill or disabled Veteran living at home. VA 
offers a comprehensive respite care program, providing respite in a 
variety of settings including nursing homes, adult day health care 
facilities and in the home. To be eligible for respite, a Veteran must 
be enrolled in VA's health care system, have a chronic condition 
requiring daily assistance, and have a caregiver who needs respite to 
maintain the Veteran safely at home. Respite care services are planned 
in advance to best align caregiver schedule preference with 
availability of respite in the setting that will meet the Veteran's 
care needs.
    Adult day health care is available for use in providing respite 
services as well as for caregiver support and education, such as 
instruction on managing challenging behaviors in Alzheimer's patients. 
To qualify for adult day health care, a Veteran must be enrolled and 
otherwise require nursing home care. Adult day health care is currently 
provided at 21 VA medical centers by VA staff and at 120 VA medical 
centers through contracts with community providers.
    In many areas, there are simply no providers with whom VA can 
contract for home respite. VA has two pilot programs underway to expand 
home respite services. VA Voluntary Services (VAVS) is establishing and 
operating a community-based home respite program to benefit Veterans 
and their primary caregivers. Any Veteran eligible for respite care can 
participate in this program, which is being implemented at 12 VA 
medical centers. This program is volunteer-oriented and provides full-
time caregivers a needed break. VA recently added a ``buddy'' component 
that matches Veteran volunteers with OEF/OIF Veterans, creating a 
relationship, bond and support system to expand services outside the 
home environment. Volunteers are trained using materials provided by 
the Senior Companion Program. More than 60 Service Organizations have 
been briefed about the program, and VA is soliciting potential 
volunteers. Volunteer availability is the only limitation on the 
potential for this program. The second pilot is a caregiver assistance 
program that is underway at two VA medical centers to provide 24-hour 
in-home respite care.
    VA recently adopted an innovative program to aid Veterans and their 
families with an option for long-term care. The medical foster home 
program identifies persons in the community who are willing to open 
their homes and care for Veterans who need daily assistance and are no 
longer able to remain safely in their own home, but do not want to move 
into a nursing home. VA calls this program, ``Support at Home--Where 
Heroes Meet Angels.''
    Both Volunteer Home Respite and Medical Foster Home work out very 
well for the family, the Veteran, and the community, particularly in 
rural areas. Concerned citizens often express an interest in helping 
Veterans, but they live too far away from a VA facility to participate 
easily. These programs offer them a chance to serve Veterans in their 
city or town by either visiting the home of the Veteran or opening 
their own home to the Veteran. VA trains all individuals who 
participate.
    VA provides caregiver support services for the families of Veterans 
receiving VA home-based primary care and hospice care. Veterans 
receiving home-based primary care typically have chronic, disabling 
diseases, and the burden of care often falls on the Veteran's family. 
Home-based primary care provides home care to over 19,000 of our most 
frail Veterans every day, and provides caregiver education and training 
on the care needs of the Veteran. VA recently adopted a new quality 
indicator, which helps us determine the level of strain and fatigue on 
our family caregivers. By the end of 2008, VA assessed the caregivers 
of 73 percent of these Veterans in Home Based Primary Care, and offered 
guidance or support to 93 percent of those identified with caregiver 
strain. Home Based Primary Care currently operates at 132 VA Medical 
Centers, and 22 of these are in designated rural settings. To further 
expand the reach of this program to serve rural Veterans, we awarded 
funds in May 2009 to start Home Based Primary Care satellites in 25 
rural community-based outpatient clinics and 14 Indian Health Service 
facilities with funding support from VA's Office of Rural Health.

Caregiver Programs for the Future

    While VA's caregiver programs address an immediate need, we 
recognize some Veterans, particularly young Veterans, will need care 
for the rest of their lives. VA is building the systemic infrastructure 
now that will support them and other Veterans into the future while 
allowing us to adapt to their changing needs. While we do not yet know 
what new advances await us in health care, VA remains committed to 
leading the medical community and establishing the benchmark by which 
all caregiver programs will be measured, as we have with our electronic 
health record and mental health services.
    VA sees an ideal caregiver program as one that leaves broad 
discretion to the Veteran and the Department concerning who can be 
named a caregiver. Similarly, caregiver services would not be limited 
by whether the Veteran's condition is physiological, psychological, 
neurological or other. It most often would involve an intermediary 
responsible for supervising and ensuring accountability of care between 
the Veteran and that caregiver to prevent conflicts of interests or 
strained relations between the Veteran and their health care provider 
based upon difficulties or issues between the Veteran and their 
caregiver. While caregiving is an essential complement of health care 
management, caregivers are selected because of the preexisting 
relationship and trust they have with Veterans. Health care providers 
maintain their relationships on a professional level and develop trust 
through compassion and experience. By retaining an intermediary, VA 
preserves both relationships and forestalls any choice a Veteran may 
feel compelled to make between his or her caregiver and health care 
provider.
    Training and qualification for certification of caregivers should 
remain the responsibility of others, such as home health care agencies, 
which already have the expertise and knowledge on how best to prepare 
caregivers for their duties.
    VA's array of caregiver programs would remain in effect to meet the 
individualized needs of Veterans and to preserve their independence for 
as long as is safe and possible. Elderly Veterans require different 
support mechanisms than Veterans with quadriplegia or a similar 
condition, and these Veterans have different needs than those with TBI; 
maintaining programs tailored for different populations ensures VA 
offers optimal care to all Veterans. These offerings must continue to 
be coordinated across the Department, principally with the Veterans 
Benefits Administration and its Aid and Attendance or Housebound 
benefits. VA envisions a model of a three-tiered system that will 
strengthen and support Veterans across their lifetime. At the broadest 
tier of this system, home-based support programs are currently provided 
to allow Veterans to retain as much independence as possible. Second, 
those requiring additional support and supervision can find these 
services in an assisted living, medical foster home, or community 
residential care environment. In providing these services, VA can 
assist Veterans in finding an appropriate residence and provide 
oversight, but it lacks the authority to pay for or provide this 
service. Finally, VA also will continue to offer community living 
centers and community nursing homes to those with even greater needs.

Conclusion

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

                                 
        Prepared Statement of Edwin L. Walker, Acting Assistant
             Secretary for Aging, Administration on Aging,
              U.S. Department of Health and Human Services
    Chairman Michaud, Congressman Brown, distinguished Members of the 
Committee: Thank you for this opportunity to discuss the needs of 
family caregivers of veterans. I want to commend you for recognizing 
the important role caregivers play in the lives of those for whom they 
care. We honor their heroism by supporting them and their loved ones 
when they return home.
    For more than forty years, the U.S. Administration on Aging (AoA) 
has served as the effective and visible advocate for older Americans at 
the Federal level. AoA provides national leadership, funding, oversight 
and technical support to a national aging network and is charged under 
the Older Americans Act to develop a comprehensive and coordinated 
system of home and community-based services for older people and their 
family caregivers.
    The aging network consists of 56 State Units on Aging; 629 Area 
Agencies on Aging; 246 Tribal organizations; over 20,000 community 
services provider organizations and thousands of volunteers. The aging 
network reaches into every community and plays a key role in delivering 
consumer-centered services and supports to some of the most vulnerable 
Members of society. What is more, funding for State and community-based 
services is significantly leveraged, with funding from sources other 
than the Older Americans Act to triple the amounts provided by AoA.
    Through strategic partnering with other Federal agencies and 
national organizations, AoA has positioned the aging network as the 
leading provider of home and community-based long-term care services to 
vulnerable Americans and their caregivers.
    My testimony today will highlight AoA and the national aging 
network experiences in addressing the complex needs of caregivers 
through our national Family Caregiver Support Program (Caregiver 
Program). This program was the first Federal program to formally 
recognize the importance of supporting family caregivers on a sustained 
basis. I will highlight examples of some of the innovative approaches 
used by our aging network to serve caregivers as well as new 
opportunities we have to better meet the needs of caregivers, including 
AoA's recent collaboration with the Department of Veterans Affairs (VA) 
to establish a Veteran Directed Home and Community-Based Services 
Program (VD-HCBS).

Caregivers: Who are they? What do they sacrifice?

    Informal caregiving is the foundation of America's long-term care 
system. Each day, in every State and community, family members, friends 
and neighbors provide extraordinary levels of assistance to persons of 
all ages with chronic illnesses and disabilities. Caregivers manage 
tasks ranging from assisting with basic personal care and homemaking to 
carrying out more complex health-related interventions like medication 
administration and wound care.
    The needs of family caregivers are complex and ever changing. 
Whether caring for a child with disabilities, an aging parent with 
dementia or a veteran returning from active duty with polytrauma or 
less severe injuries, caregivers face often rapidly changing situations 
and needs. As a result, caregivers must be able to depend on a system 
that understands their needs and responds to them with a comprehensive, 
consumer-centered and flexible array of programs and services.
    Caregivers may be found in every community. They come from every 
walk of life.
    They are male and female, young and old, and may or may not possess 
adequate financial resources to meet their own daily needs or the needs 
of those for whom they care.
    It is estimated that 44.4 million Americans provide care for adult 
family members and friends or other loved ones. The Family Caregiver 
Alliance in San Francisco, California estimates these caregivers 
provide in excess of 37 billion hours of care per year.
    The economic value of unpaid caregiving in 2007 was estimated to be 
about $375 billion, up from $350 billion in 2006.i This is 
what it would cost if that care had to be replaced with paid services. 
This amount equals more than the total of medical and long-term care 
spending in 2006.
---------------------------------------------------------------------------
    \i\ Gibson M.J., & Houser, A.N. Valuing the Invaluable: The 
Economic Value of Family Caregiving, 2008 Update. Washington, D.C.: 
AARP Public Policy Institute: 2008 November, Insight on the Issues #13.
---------------------------------------------------------------------------
    We are seeing growing numbers of caregivers ``sandwiched'' between 
two generations of individuals needing care: young children and aging 
family members. They often experience difficulty balancing work 
schedules with the demands of caring for their loved ones. As a result, 
many caregivers leave the workforce or struggle with what amounts to 
two full time jobs: their formal employment--essential for income and 
health care coverage--and caring for their loved one.
    We also are seeing younger individuals caring for parents, 
grandparents or siblings, and growing numbers of family caregivers 
working to keep disabled adult family members out of institutions and 
in their homes and communities. Another growing segment of the 
caregiver population includes grandparents or other relatives of 
children, with or without disabilities, taking on full-time parenting 
responsibilities for the second or third time in their lives because 
the child's parents are unable or unwilling to do so, or because they 
are serving our country in distant lands.
    And, not surprisingly, with our military actively engaged in Iraq 
and Afghanistan, we are seeing an increased emphasis on supporting the 
families of military personnel who are returning from combat with 
traumatic brain injuries and other serious, chronic or debilitating 
conditions.
    In recent years, numerous studies have emerged exploring the 
complexities of caregiving. These studies have examined the health 
impacts of caregiving, the status and challenges of rural caregivers, 
cultural differences among caregivers and the challenges faced by those 
who balance work, family and caregiving responsibilities.ii
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    \ii\ For more information on the varied needs of caregivers and to 
view and download a variety of research reports pertaining to 
caregivers, please visit the National Alliance for Caregiving's Web 
site at: http://www.caregiving.org/.
---------------------------------------------------------------------------
    Caregivers also fill multiple roles within the context of their 
caregiving situation. Caregivers are often both nurse and home health 
aide, paralegal and financial advisor, as well as devoted family 
member. They often perform highly skilled or specialized medical tasks 
such as tube feeding, wound care, and medication management and 
administration.
    Caregivers themselves have many needs that often go unaddressed or 
are ignored altogether. Research has shown the stress associated with 
caregiving exacts a significant toll on the emotional, physical and 
financial well-being of many caregivers. Caregivers often report 
declines in their own health and functional ability as a result of the 
care they provide. Caregivers experience high rates of depression, 
stress and other mental health issues. Financially, the impact of 
caregiving can be significant. One study found that caregiving for a 
parent significantly increases the caregiver's chances of living in 
poverty in later life.
    Despite the negative impacts of caregiving, there is a bright side 
as well. Many caregivers report deriving great satisfaction from 
caregiving and from having the opportunity to fulfill what they see as 
an essential familial obligation to a loved one or friend. In fact, 
past surveys of recipients of aging network caregiver support services 
showed that nearly two-thirds of caregivers felt a sense of 
accomplishment as a result of the care they were providing.
    Regardless of their background, living situation, or level of 
training, family caregivers represent the best society has to offer. 
And, while caregiving is an experience affecting all races, 
ethnicities, lifestyles, and income levels, on a deeply personal and 
individual level, it has become an essential component of the national 
dialog surrounding our Nation's health and long-term care system.

The National Family Caregiver Support Program

    The AoA National Family Caregiver Support Program (Caregiver 
Program) serves as a platform for the aging network to focus 
specifically on the needs of family caregivers by integrating those 
needs with the provision of other home and community-based services, 
including State-funded caregiver programs. The unprecedented caregiver 
support infrastructure established by the Caregiver Program created a 
multifaceted system of services for caregivers, including:

          Information about available services;
          Assistance to caregivers in gaining access to 
        services;
          Individual counseling, organization of support groups 
        and caregiver training;
          Respite care; and
          Other supplemental services.

    Amendments to the Caregiver Program in 2006 permitted caregivers of 
persons with Alzheimer's disease or related dementias of any age to be 
served and lowered the age of grandparents and relative caregivers 
raising children from 60 to 55. These two modifications allowed the 
aging network to expand the scope of its reach to include a broader 
cross section of service recipients.
    The Caregiver Program has allowed AoA and the aging network to 
acknowledge the central role of caregivers in our health and long-term 
care delivery systems. National survey data of our service recipients 
tell us that nearly 73 percent of caregivers assist the care recipients 
with very basic life activities such as bathing, dressing and eating.
    Caregivers must have access to services and supports designed to 
safeguard their health and emotional well-being while offering 
protections against some of the financial burdens often associated with 
caregiving. To that end, AoA, through its partnership with the Centers 
for Medicare and Medicaid Services, has established highly visible 
Aging and Disability Resource Centers (ADRCs) in 46 States and 
territories and in more than 200 communities nationwide, with plans to 
have ADRCs functioning in every State by 2010. For caregivers, ADRCs 
are a trusted source for reliable information on the range of programs 
and supports available to them.
    The aging network has many examples that highlight its creativity, 
flexibility and innovation in serving older consumers, persons with 
disabilities and their caregivers.
    For example, in Connecticut a pilot consumer-directed cash and 
counseling option is being developed in the South Central region of the 
State with funds from our Caregiver Program and the statewide Respite 
Care Program. This option helps consumers at risk of nursing home 
placement but who are not yet eligible for Medicaid to remain in their 
own homes.
    In Texas, the Area Agency on Aging of Central Texas has partnered 
with Scott & White Memorial Hospital to establish two innovative 
programs for caregivers. The first organizes and connects caregivers 
with volunteer support teams who assist them with practical and 
emotional support. The second provides the evidence-based Resources for 
Enhancing Alzheimer's Caregiver Health (REACH) intervention. This 
approach assesses the needs and risk factors of caregivers, matching 
them with services and supports to reduce their risks and enhance well-
being.

    The Caregiver Program has allowed AoA and the aging network the 
opportunity to:

          Infuse the principles of consumer direction into 
        existing service delivery systems;
          Address the unique challenges associated with serving 
        caregivers in both urban and rural settings;
          Provide a broad range of services, including respite, 
        for diverse age groups, including grandparents and other 
        relatives raising grandchildren; and
          Ensure that programs serve consumers in culturally 
        competent ways.

Caregiver Program Accomplishments

    The aging network has had a significant impact in the lives of 
caregivers and in supporting the work they do. Through the Caregiver 
Program, we annually touch the lives of more than 1 million people--
caregivers, families seeking assistance, grandparents and other 
relatives raising grandchildren.
    We know that through the Caregiver Program, the aging network is 
having a positive impact on the lives of those we serve. More than 81 
percent of caregivers interviewed for the most recent National Survey 
told us that the Caregiver Program enabled them to care for their loved 
ones longer, thereby avoiding costlier and more restrictive placement 
in an institutional setting. Seventy-five percent of caregivers 
indicated that services helped to reduce some of the stresses they felt 
and nearly 46 percent of caregivers said respite was the service found 
to be most helpful, thus underscoring the importance of caregivers 
taking time away from their situation to rest and recuperate.

The AoA/VA Collaboration

    The Department of Veterans Affairs and the Administration on Aging 
have long recognized the many concerns in serving our respective 
populations. Addressing the needs of family caregivers is essential for 
helping individuals remain in their homes and communities; and the 
knowledge that both younger veterans and older adults want to be in 
charge of their own lives to direct their own service needs.
    AoA and VA recognize the importance of caregivers' service to their 
loved ones. Together we have a shared commitment to meeting the needs 
of consumers and their families, on their terms and according to their 
needs and preferences. The aging network recognizes the importance of 
partnering with the VA at the local level to meet the needs of 
veterans. In Maine, for example, Area Agencies on Aging (AAA) 
coordinate services and benefits for veterans in collaboration with the 
Veterans Homes throughout the State, the Togus CA Medical Center and 
the Department of Veterans Affairs. Coordination is done via the ADRCs, 
the Partners in Caring State-funded respite program, the State Health 
Insurance Assistance Program, and our Family Caregiver Program.
    Additionally, some of the AAAs have veterans' advocates who come to 
their agency on a scheduled basis to meet with veterans and their 
caregivers. Community information staff at AAAs obtain and distribute 
updated information regarding veterans' benefits. Finally, some of the 
AAAs have adult day programs at which veterans participate.
    AoA and VA are jointly funding the Community Living Program and the 
``Veterans Directed Home and Community-Based Services Program.'' 
Through this program, veterans of all ages are being served to direct 
and purchase their long-term services and supports through the aging 
network. For its role, the aging network 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 make changes where necessary.
    The program began in February 2009 with funding for 20 States, ten 
of which provide VD-HCBS. To date 70 veterans are being served in 
Michigan and New Jersey and we are already beginning to see the 
results. In Michigan, for example, a 74 year old veteran living in an 
assisted living facility was referred to the newly established VD-HCBS 
program at the AAA. Because of that program, the veteran was able to 
move out of the facility and into his own apartment where he has hired 
a personal aide who works for him for 40 hours per week, providing the 
supports he needs to remain independent in the community. Staff report 
that he is doing well.
    By building on the capacities and infrastructure of the aging 
network, the VA is already helping to ensure a coordinated and 
consumer-centered approach to serving the needs of veterans and their 
caregivers.

Conclusion

    It has often been said that caring for an older person is a family 
business. The same can be said for caring for a returning veteran. No 
one knows better how to care for someone than their loved one and those 
receiving the care are the better for it. Caring for the caregivers 
must be a national focus and a top priority as our Nation moves ahead.
    As AoA and the VA move forward in their collaborative efforts to 
serve the complex needs of veterans and their caregivers, 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.

                                 
        Prepared Statement of Noel Koch, Deputy Under Secretary
            of Defense, Office of Transition Policy and Care
                Coordination, U.S. Department of Defense
    Mr. Chairman, I am pleased to be with you today to discuss the 
efforts of the Department of Defense in support of our wounded, ill and 
injured service personnel, their families and the needs of family 
caregivers. The Department of Defense (DoD) and Department of Veterans 
Affairs (VA) continue to work together to address these needs through 
the partnership we formed 2 years ago with the establishment of the 
DoD/VA Senior Oversight Committee.
    While all of our wounded, ill or injured servicemembers will 
eventually become veterans, some may be able to return to active duty 
following their recovery, and may choose to do so. In the meantime, 
their recovery may require the assistance of a family member as a full 
or part-time caregiver. These caregivers endure distinct losses of 
their own and have needs specific to their situation. DoD and VA are 
working on ways to alleviate those losses and assist with those needs.
    The President's Commission on Care for America's Returning Wounded 
Warriors and the National Defense Authorization Act for 2008 (NDAA 
2008) required our departments to provide a single point of contact for 
recovering servicemembers and their families, along with a recovery 
plan, to assist them along the continuum of care from recovery and 
rehabilitation, and from there either back to active duty or 
reintegration into civilian life.
    The DoD Recovery Care Coordinator (RCC) and the DoD/VA Federal 
Recovery Care Coordinator (FRC) work with the recovering servicemember 
and his or her family to assess their needs and identify resources 
needed to support them. If the family caregiver requires additional 
support as a result of having to provide full-time care to the 
servicemember and is therefore precluded from earning an outside 
income, the RCC or FRC will assure that they are guided to the 
resources and benefits available to them.
    A recovery plan is created in conjunction with the RCC or FRC, the 
servicemember, his or her family, and members of the clinical and non-
clinical recovery team. The plan identifies goals, actionable steps to 
achieve the goals, and points of contact for each step toward reaching 
the goal. Effectively, the plan is a roadmap guiding the recovering 
servicemember and the family along the process or recovery, 
rehabilitation, and reintegration. It may include information to assist 
the family member serving as the primary caregiver in receiving 
compensation, financial assistance, job placement services, support 
with child care, counseling, respite services, and other benefits and 
services available from Federal, State, and local governments, as well 
as our non-profit partners.
    In response to the NDAA 2008 requirement to improve policy on care 
management and transition of our recovering servicemembers, our DoD 
Instruction on the Recovery Coordination Program is in coordination and 
is slated for approval by 15 July 2009. This policy establishes uniform 
guidelines and procedures for our Military Service Wounded Warrior 
Programs and assigns responsibilities for implementation of the 
Recovery Coordination Program.
    In addition to the Recovery Plan and the Recovery Care 
Coordinators, there are a number of other resources available to our 
recovering servicemembers and their families through a variety of Web 
sites and publications. These include, but are not limited to, the 
following:
    The National Resource Directory (NRD): This is a successful tri-
agency initiative comprising DoD, VA, and the Department of Labor. It 
is an online resource linking servicemembers, care providers and family 
caregivers to information on more than 11,000 Federal, State and local 
support services. The NRD facilitates searches by State, as different 
states provide different resources and benefits.
    The Family Handbook: This DoD publication provides caregivers 
information about the recovery process, and includes such advice as why 
and how the caregivers themselves should attend to their own health and 
well-being as they go about helping their family member. It also shows 
them how to track information that is key to the recovery of the 
servicemember.
    The Compensation and Benefits Handbook: This book includes a 
section dedicated exclusively to caregivers. It provides community 
options such as transportation services, respite care, financial 
assistance, and counseling resources.
    Military One Source: A 24/7 year round call center and Web site for 
active duty Members and families.
    Our Recovery Coordinators, recovery teams and providers, as well as 
our servicemembers and their families all make use of these offerings. 
A recent poll of our Recovery Coordinators and providers indicated over 
90 percent utilization of these resources as they develop and execute 
their recovery plans.
    The Center for Naval Analysis (CNA) has completed a study of family 
caregivers confirming that mothers and spouses on an average spend more 
than a year, and in severe cases, longer, providing physical and 
emotional support to recovering servicemembers. Based partly on the 
findings, DoD proposed legislation for 2010 which would provide special 
monthly compensation to catastrophically wounded servicemembers. The 
amount of the compensation, intended to be used to compensate 
designated family caregivers, would be based on the monthly income of a 
private sector home health care professional, and that would continue 
until the servicemember transitions through DoD and into the Department 
of Veterans Affairs.
    As a result of NDAA 2008, DoD currently provides respite services 
to those caring for seriously ill or injured active duty 
servicemembers. Primary caregivers are given a reprieve from their 
responsibilities for up to 8 hours a day, 5 days a week.
    In addition to this respite care benefit, there is a separate 
respite care provision provided under the Extended Care Health Option 
(ECHO), which provides a more limited break for caregivers. ECHO 
beneficiaries are eligible for a maximum of 16 hours of respite care in 
any calendar month in which they also receive ECHO-authorized benefits 
apart from the ECHO Home Health Care Benefit.
    These programs notwithstanding, much remains to be done. As you 
know, there are several legislative proposals under consideration that 
further address the needs of family caregivers. Both DoD and VA are 
aware of the need for further research into how better to support our 
family caregivers, and this is under discussion in the Department.
    Mr. Chairman, we are reminded daily of our obligation to our 
servicemembers and their families, and particularly to the wounded, ill 
and injured, and those who bear the greatest burden of caring for them. 
We are committed to providing the support they need to help ensure a 
successful transition through recovery and rehabilitation and back to 
active duty or reintegration into their communities.
    We appreciate the opportunity to come before you today to discuss a 
subject which the Secretary of Defense has said repeatedly is a 
Departmental priority second only to the wars in which we are engaged. 
I will be happy to try to answer your questions.
    Thank you.

                                 
        Prepared Statement of Adrian Atizado, Assistant National
            Legislative Director, Disabled American Veterans
    Mr. Chairman and Members of the Subcommittee:
    On behalf of the more than 1.3 million Members of the Disabled 
American Veterans (DAV) and its Auxiliary, thank you for inviting our 
organization to submit testimony for this important oversight hearing 
by the Subcommittee on Health. We appreciate the opportunity to offer 
our views on meeting the needs of family caregivers of disabled 
veterans.
    Informal caregivers play a critical role in facilitating recovery 
and maintaining the veteran's independence and quality of life while 
residing in their community, and are an important component in the 
delivery of health care by the Department of Veterans Affairs (VA). 
These family members, relatives, or friends are motivated by empathy 
and love, but the very touchstones that have defined their lives--
careers, love relationships, friendships, and their own personal goals 
and dreams--have been sacrificed, and they face a daunting lifelong 
duty as caregivers. Research has found that all too often the role of 
informal caregiver exacts a tremendous toll on that caregiver's health 
and well-being. Family caregiving has been associated with increased 
levels of isolation, depression and anxiety, higher use of prescription 
medications, compromised immune function, poorer self-reported physical 
health, and increased mortality. Research also suggests that caregiver 
support services can help to reduce adverse health outcomes arising 
from caregiving responsibilities and can improve overall health status.
    Despite these documented physical and psychological hardships and 
knowledge of effective interventions against caregiver burden, family 
caregivers of disabled veterans receive little support from VA, 
compromising their ability to provide care to their loved one. 
Accordingly, the delegates to our most recent National Convention, held 
in Las Vegas, Nevada, August 9-12, 2008, approved a resolution calling 
for legislation that would provide comprehensive supportive services, 
including but not limited to financial support, health and homemaker 
services, respite, education and training and other necessary relief, 
to immediate family member caregivers of veterans severely injured, 
wounded or ill from military service.

Established VA Programs

    Based on existing statutory and regulatory provisions,\1\ VA 
currently administers a number of services that support some informal 
caregivers. These programs are primarily within VA's long-term care 
program and include: adult day health care (ADHC); homemaker and home 
health aide (H/HHA); home-based primary care (HBPC); care coordination/
home telehealth (CCHT); respite care; case management and coordination; 
transportation services; hospice; and general caregiver education and 
support services.
---------------------------------------------------------------------------
    \1\ 38 U.S.C. Sec. Sec. 1782(a), 1782(b), 1712A(b); 38 C.F.R. 
Sec. 17.38.
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    Such services are part of VA's goal to provide veterans care in the 
least restrictive settings. In doing so however, VA has not adequately 
addressed the concerns of this Subcommittee as well as those of the 
veteran community. VA has recently reported large year-to-year 
increases in long-term care activity, but VA's data conventions for 
reporting this workload, which assists VA's ability to manage this 
program's patient population, are problematic for the purposes of 
oversight and may misstate that activity.\2\ We applaud VA leadership 
in reinforcing the elimination of local restrictions, which limit 
access to such services as a cost-saving measure; however, we continue 
to receive reports that service-connected disabled veterans and their 
family caregivers are not receiving the services they need through 
these alternative programs.
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    \2\ GAO-09-145 (http://www.gao.gov/new.items/d09145.pdf).
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    The DAV is aware of barriers that exist when veterans and their 
families attempt to access other VA services. A recurring theme from 
our Members includes the lack of knowledge about what services are 
available, significant variability in availability of services from one 
VA facility to the next; residing outside a VA facility's geographic 
service area, difficulty honoring the veteran's preferences to have 
family provide care rather than strangers, the lack of resources in 
rural areas; and, lack of flexibility in existing VA programs that do 
not fit the needs of the family caregiver.
    For example, VA's HBPC is a group effort between the veteran, 
family, caregiver, VA, and community. The HBPC team, which generally 
consists of a physician, registered nurse, licensed practical nurse, 
dietician, occupational or physical therapist, and social worker, 
serves as a primary link between a VA medical center and veterans and 
their informal caregivers who could benefit from home visits. The goals 
of the HBPC team are to assist veterans and their family caregivers to 
limit the effects of chronic illness and maintain or restore them to 
the highest level of health and well-being so they may remain at home 
for as long as possible. Once it is determined that a veteran qualifies 
for the HBPC program, the HBPC team provides skilled nursing care, 
patient education, limited rehabilitation, nutritional counseling, 
social services, caregiver support, medication management education, 
and wound care. However, HBPC services are provided to veterans in a 
limited geographic area that is in close proximity to a VA medical 
center, a VA outpatient clinic, or a satellite office. Moreover, if a 
service is not provided by the HBPC team, a referral may be made to 
other community resources such as mobile meals, homemaker services, or 
community home care agencies. Again, such community resources are 
limited in rural and highly rural areas where nearly three million 
veterans (40 percent) of VA's enrolled veteran population resides.
    For VA's respite care benefit, a significant majority of veterans 
do not avail themselves of such services due to lack of knowledge of 
such a benefit or the services are simply not available in that 
community. The majority of in-home respite care is purchased by VA from 
community agencies that may not provide weekend or overnight respite 
services. Furthermore, trust and privacy remain significant barriers 
when an individual who is to provide in-home respite, homemaker and 
home health programs, is perceived as a stranger. For VA's homemaker/
home health aide program, low utilization can be attributed to the 
limited hours of services made available by a VA facility to each 
veteran and family. There is also low utilization of VA's ADHC benefit 
due to limited availability in the community as well as the lack of 
age-appropriate settings in some cases. Other barriers to access 
include limited flexibility in VA policy for lodging and transportation 
(including special modes of transportation) for disabled veterans who 
require the assistance of their caregivers when traveling to and from 
VA appointments, and unmet demand for assistance with instrumental 
activities of daily living (IADLs) and supplementary services. Similar 
barriers also exist in accessing caregiver support in an individual or 
group setting.
    In situations where a veteran will require long-term or lifetime 
care or assistance in the requirements of daily living, VA indicated it 
provides counseling and training to family members and other caregivers 
who are capable and willing to take on this responsibility. VA has 
pointed out that training for family members is addressed when it is 
clinically necessary and appropriate through local arrangements with 
community home health care agencies and providers that train the family 
member, and, if hired, supervise the care they give to the veteran. 
Such an arrangement puts these agencies in the position of being 
responsible for assuming the liability coverage of the family caregiver 
and ensuring that the quality of the care veterans receive meets the 
standards that are required. Unfortunately, to our knowledge VA has not 
provided Congress or the veteran community data to describe the breadth 
and depth of these arrangements. It is our understanding these 
arrangements are passive by nature where a veteran or the informal 
caregiver must self-identify as wanting to be trained, certified, and 
paid before VA will refer them to the local community agency.
    Furthermore, there is no guarantee under these arrangements that 
the family caregiver will be employed, and if hired, the agency may 
require the veteran's family caregiver to provide caregiver services to 
other veterans or civilian clients. There is no assurance that as an 
employee of a community agency, family caregivers will receive the 
specialized training to care for polytrauma and other combat-related 
disabilities. Equally important, we question whether caregiver support 
services will be provided as an employee in a workforce that is known 
to have high worker turnover.\3\ Without sufficient information to 
address these basic concerns, the DAV is wary about this course of 
action by VA to provide training for family caregivers of severely 
disabled veterans.
---------------------------------------------------------------------------
    \3\ Institute of Medicine, ``Retooling for an Aging America: 
Building the Health Care Workforce.'' 2008.
---------------------------------------------------------------------------
    Mr. Chairman, when we think of long-term care, we generally assume 
it is reserved for the oldest veterans, near the end of life. Today, 
however, we confront a new population of veterans with different 
demographics, a different culture, expectations, and need specialized 
forms of long-term care--a population that will need comfort and care 
for decades. As part of VA's medical care benefits package, the 
Department's long-term care program was created primarily to meet the 
needs of aging veterans, not the newest generation and the needs of 
their family caregiver. The DAV is greatly concerned that VA's long-
term care program, which has have failed to keep pace with innovative 
trends outside the Department in caring for aging veterans, appears 
poised to do so with this new population of younger severely disabled 
veterans and their family caregivers who are increasingly being treated 
as incidental to, rather than as a key Member of, VA's 
interdisciplinary treatment team and patient-centered care.
    We acknowledge health care is population based and VA services are 
driven by the needs of the population it serves. As this Subcommittee 
is aware, for fiscal year (FY) 2010, VA expects to treat nearly 6.1 
million patients, of whom 419,256, or 7 percent, are Operations 
Enduring and Iraqi Freedom (OEF/OIF) veterans. Some of them suffer 
severe polytraumatic injuries and traumatic brain injuries (TBI) as a 
consequence of combat in Iraq and Afghanistan. Most of the severely 
injured OEF/OIF veterans will be able to return to their families or 
will be moved to an appropriate therapeutic residential care setting--
but with the expectation that family members will serve as lifelong 
caregivers and personal attendants to help them adjust and make up for 
the dramatic loss of physical, mental, and/or emotional capacities as a 
result of their war injuries.
    Although they share similar challenges with family caregivers of 
aging veterans with chronic disabilities and acute care needs, 
immediate families of severely injured OEF/OIF veterans face other 
daunting challenges. The spouse of a severely injured veteran is likely 
to be young, have dependent children, and reside in a rural area where 
access to support services of any kind can be limited. They are also 
more likely to be dependent on State programs and Medicaid, with great 
variability from State to State.\4\ Complicating matters is the 
increasing number of the severely injured are from reserve components 
(primarily Army and Marine) and National Guard units. It is likely that 
the families of these troops have never lived on military bases and do 
not have access to the available social support services and networks 
connected with active duty military life. Spouses of the injured often 
must give up their own employment and employment benefits (or withdraw 
from school in many cases) to care for, attend to, and advocate for 
their injured veterans. They often fall victim to bureaucratic mishaps 
in the shifting responsibility of conflicting government pay and 
compensation systems (military pay, military disability pay, military 
retirement pay, VA compensation). Also, they rely on this much-needed 
subsistence in the absence of other personal income in an era when two-
income families are the norm.
---------------------------------------------------------------------------
    \4\ United States Agency for Health care Research and Quality, 2007 
National Health care Quality & Disparities Reports, Rockville, MD, 
2008. Also, Jim Garamone, U.S. Military Recruiting Demographics,'' 
American Forces Press Service, November 23, 2005; David S. Riggs, 
``Difficulties in Family Reintegration Following Military 
Deployments,'' Healing the Scars of War (New York: Institute for 
Disaster Mental Health. 11 Apr. 2008); U.S. Department of Defense, 
Population Representation in the Military Services. (Washington: Office 
of the Under Secretary of Defense, Personnel and Readiness, 2006) 
(www.defenselink.mil/prhome/PopRep_FY06).
---------------------------------------------------------------------------
    In discussion with VA officials, including facility executives and 
clinicians who are caring for some of these injured veterans, it has 
become apparent to DAV and others in our community that VA still needs 
to adapt its existing long-term care programs to better meet the 
individualized needs of a truly special and unique population. We 
believe VA's existing programs will not be satisfactory or sufficient 
in the long run. In that regard, VA needs to address barriers to 
existing programs that support family caregivers. VA must also have a 
clear and measurable plan to establish a menu of age-appropriate 
services tailored to meet the different needs of this new patient 
population as well as the aging veteran population and their family 
caregivers. These services must be available and provided when and 
where they are needed. While the numbers of veterans sustaining these 
catastrophic injuries are small, their needs are extraordinary and will 
need to be met over a much longer timeline. While today they are under 
the close supervision of the Department of Defense and its heath 
agencies, their family members, and VA, as years go by, VA will become 
a more crucial part of their care and social support system, and in 
many cases may need to provide for their permanent living arrangements 
in an age-appropriate therapeutic environment.

VA Initiatives

    There are a series of ongoing initiatives listed below that may 
have a positive impact on VA's policies and programs for caregiver 
support; however, the DAV is concerned about the incremental and 
fragmented approach to this issue. We are hopeful that with this 
Subcommittee's commitment to strong oversight, a more focused effort 
will yield a thoughtful synthesis to address the pressing need for a 
robust caregiver support program.
    Caregiver Assistance: The more widely recognized initiative VA has 
undertaken that reflects the Department's commitment to providing 
family caregivers the support and services they need is the December 
2007 announcement that it would provide nearly $4.7 million for 
caregiver assistance pilot programs.\5\ These pilot programs are to 
expand and improve health care education and provide needed training 
and resources for caregivers who assist disabled and aging veterans in 
their homes. Oversight and assessment for adoption into existing VA 
programs of these eight pilot programs are the responsibility of the VA 
interdisciplinary Caregiver Advisory Board (CAB). Also, the CAB is to 
identify system-wide core caregiver needs, develop initial 
recommendations for VA caregiver support services; and develop a 
national VA caregiver assistance program. As these pilot programs 
sunset at the end of this fiscal year, we look forward to early 
adoption of services that have been found effective, and we are hopeful 
the CAB report will provide useful information that may guide and shape 
VA's caregiver support services.
---------------------------------------------------------------------------
    \5\ (1) Memphis (Tenn.) and Palo Alto (Calif.) VA medical centers; 
(2) Gainesville (Fla.) VAMC; (3) VA Health care System of Ohio; (4) VA 
Desert Pacific Network and the VA Sierra Nevada Health care System; (5) 
Albany (N.Y.) VAMC; (6) Atlanta (Ga.) VAMC; (7) Tampa (Fla.) VAMC and 
Miami VA Health care System; (8) VA Pacific Islands Health Care System.
---------------------------------------------------------------------------
    VA Advisory Committee on OEF/OIF Veterans and Families: In April 
2007, VA established this 17-person Committee which is responsible for 
reviewing VA services and benefits, advising the VA Secretary on health 
care, benefits, and family support issues, and making recommendations 
for tailoring VA services and benefits to meet the needs of OEF/OIF 
veterans and their families. The DAV appreciates the insight and 
advocacy of the Committee's interim report. We look forward to its 
final report and recommendations on issues affecting families, 
including dependents and survivors.
    Brain Injury Family Caregiver Panel: Pursuant to section 744(a)(2) 
of P.L. 109-364, the Veterans Traumatic Brain Injury Family Caregiver 
Panel was established in 2007. The 15-member panel was created by the 
DoD to operate under a Defense Health Board as a Subcommittee to advise 
and specifically provide DoD and VA with independent advice and 
recommendations on the development of training curricula to be utilized 
by the above mentioned family members on techniques, strategies, and 
skills for care and assistance for such individuals with TBI. The panel 
was convened on several occasions, to include a recent townhall meeting 
to discuss matters related to the development of this curriculum and to 
hear from the public about the issue.
    Assisted Living: We are encouraged by VA's shift in its position to 
seek authority from Congress to provide assisted living. Then-VA 
Secretary Principi's transmittal letter conveyed with the 1999 Assisted 
Living Pilot Program (ALPP) report to Congress stated that VA was not 
seeking authority to provide assisted living services, believing this 
is primarily a housing function. In its most recent budget request, VA 
acknowledges that the findings \6\ should be useful both in VA and 
nationwide in guiding the growth and development of assisted living 
programs and in designing an optimal system of residential care 
services for disabled veterans. Although it is not clear what this new 
posture is based on or if VA will seek legislative authority, the DAV 
applauds Congress for passing P.L. 110-181, the FY 2008 National 
Defense Authorization Act, which requires VA, in collaboration with the 
Defense and Veterans Brain Injury Center of the Department of Defense, 
to conduct a 5-year ALPP with special consideration for veterans 
residing in rural areas and veterans suffering from TBI.
---------------------------------------------------------------------------
    \6\ The Gerontologist. 47 (3), 365-377.
---------------------------------------------------------------------------
    Volunteer Respite: In February 2008, VA began working on 
establishing twelve pilot sites for the OEF/OIF Caregiver Support 
Program Initiative, in which the VA Voluntary Service recruits and 
trains volunteers to provide a few hours of respite care a week for 
family caregivers of veterans who live in their community. This 
promising new initiative provides in-home and casual respite in a 
preferred setting by age-appropriate volunteers in areas where such 
services is not available, particularly in more rural areas.
    Homeless: VA intends on using the authority mandated in P.L. 110-
387, the Veterans' Mental Health and Other Care Improvements Act of 
2008, and authority provided in other legislation to establish pilot 
programs with community-based non-profit and cooperating agencies to 
provide supportive services specifically designed to prevent 
homelessness. These pilots will also be coordinated with programs of 
other relevant agencies to encompass both rural and urban sites with 
the goal of preventing homelessness and maintaining housing stability 
for the veteran's family.
    Mental Health: Vet Centers, operated by VA's Readjustment 
Counseling Service, provide nonmedical readjustment counseling that 
includes individual and group counseling, marital and family counseling 
for military-related issues, bereavement counseling, military sexual 
trauma counseling and referral, community outreach and education, 
substance abuse assessments, medical referral, assistance with VA 
benefits, employment counseling, guidance and referral and information 
and referral to community resources. This includes psychological 
counseling for traumatic military-related experiences and family 
counseling when needed for the veteran's readjustment. VA has 
established teams in approximately 100 facilities to address the mental 
health needs of returning veterans. These teams work with Vet Centers 
to conduct outreach in the community and ``in-reach'' to facilitate 
identifying mental health conditions in primary care, educating 
veterans and family members about mental health conditions, and 
providing services in an environment specific to new veterans.
    Hospice and Bereavement: VA researchers have developed a new VA 
palliative care quality measure that currently is being tested 
nationwide. Using telephone interviews of family members of veterans 
who had received hospice care from a VA facility, the FATE (Family 
Assessment of Treatment at End of Life) survey was created to identify 
aspects of end-of-life care in the VA system not otherwise assessed and 
also identifies issues unique to veterans. Such a system-wide strategy 
to assess the quality of end-of-life care for veterans will allow VA to 
define and compare the quality of end-of-life care at each facility and 
to identify opportunities for improvement at the facility and regional 
levels. This will help VA identify and disseminate successful processes 
and structures of care throughout VA that will honor the preferences of 
the veteran and family.
    Department of Health and Human Services (HHS): In September 2008, 
HHS announced it would provide VA with over $19 million to provide 
consumer-directed home and community-based services to veterans 
regardless of age (designed to reach people who are not eligible for 
Medicaid). Administered by HHS' Administration on Aging (AoA) in 
collaboration with the Veterans Health Administration (VHA), $10.5 
million is being provided by HHS through AoA, and $5.7 million by the 
states. VA estimates purchasing at least $3 million in veteran-directed 
home and community-based services across 10 states \7\ for older 
veterans and for recently returned veterans with long-term care needs 
to divert those at risk from nursing home placement. The program 
features a consumer directed model of care by providing veterans more 
control over their long-term care, including the ability to determine 
the types of services they receive and the manner in which they receive 
them, including the option of hiring their own care workers.
---------------------------------------------------------------------------
    \7\ Arkansas, Connecticut, Florida, Massachusetts, Michigan, New 
Jersey, New York, Texas, Virginia, and Washington.

---------------------------------------------------------------------------
Overarching Concerns

    Eligibility for VA Caregiver Support: To its credit, VA has 
acknowledged \8\ that the Department needs to provide more support to 
family caregivers caring for veterans. While the DAV is hopeful these 
initiatives will be used to create system changes within VA to meet the 
needs of informal caregivers, VA's institutionalized perspective that 
the informal caregiver is incidental to the lifelong care of a severely 
disabled veteran remains one of our chief concerns. Under current law, 
38 United States Code Sec. 1782, VA provides counseling, training, and 
mental health services to members of the veteran's immediate family, 
the veteran's legal guardian, and to the individual whose household the 
veteran certifies as intention to live. In accordance with this law, 
these services are only provided for: 1) veterans receiving treatment 
for a service-connected disability if the services are necessary in 
connection with that treatment, and 2) veterans receiving treatment for 
other than a service-connected disability if the services are necessary 
in connection with the treatment, the services were initiated during 
the veteran's hospitalization, and the continued provision of the 
services on an outpatient basis is essential to permit the discharge of 
the veteran from the hospital. Services covered under this authority 
are certainly part of the support services family caregivers need, but 
fall far short of a comprehensive package the DAV believes would be 
sufficient. Moreover, VA's current authority is silent on providing 
prolonged support services for family caregivers beyond acute or sub-
acute treatment and rehabilitation of the veteran.
---------------------------------------------------------------------------
    \8\ U.S. Senate Committee on Veterans' Affairs hearing, ``Pending 
Health-Related Legislation,'' April 22, 2009.
---------------------------------------------------------------------------
    We believe there are significant gaps in VA's existing medical 
benefits package, and clarity is needed in VA's priority and 
responsibility to provide the support necessary that would allow family 
caregivers of severely disabled veterans to remain in their vital role. 
The DAV understands caregiver support services falls under VA's long-
term care program; however, we urge Congress to address the unequal 
eligibility for long-term services that impacts eligibility of family 
caregivers for services, and for VA to abandon its one-size-fits-all 
approach in long-term care which is not patient centric, and limits the 
use of and access to such care.
    Caregiving is a Public Health Concern: There is also a growing 
movement in the United States to address the needs of informal 
caregivers as a public health concern by looking at population-based 
public health outcomes of caregivers to promote healthy living rather 
than life without disease.
    The Institute of Medicine designates the general functions of 
public health as assessment, policy, and assurance. Having a solid 
evidence base is necessary to inform policies, programs, and 
interventions. The National Long Term Care Survey (NLTCS) is funded 
through a Cooperative Agreement (2 U01 AG0007198) between the National 
Institute on Aging (NIA) and Duke University. It is a longitudinal 
survey designed to study changes in the health and functional status of 
older Americans (aged 65+). It also tracks health expenditures, 
Medicare service use, and the availability of personal, family, and 
community resources for caregiving. A supplementary caregiver survey 
was been added to obtain information on the health and functional 
status of people who take care of the 65 and older population in a home 
environment.
    The NLTCS in combination with the caregiver supplement to the NLTCS 
can be used to examine such things as how many hours of help they 
provide with ADLs and IADLs for chronically disabled elders receive 
weekly, and what number and percentage of those hours are provided by 
informal caregivers. It can also be further broken down by primary and 
secondary caregivers and by relationship, (e.g., spouse, son, daughter, 
friend, etc.) as compared to paid workers. This enables policy 
researchers to measure the time burden of providing informal care on 
caregivers (especially primary caregivers) in relation to the severity 
of disability and other care recipient characteristics. The 
relationship between weekly time burden of informal care and self-
reported indicators of caregiver stress can then be analyzed. Further 
analyses could be carried out with respect to relationships among time 
burden of informal care, self-reported caregiver stress, use/non-use of 
formal services, and funding sources for formal services (public/
private). Finally, the NLTCS/ICS contains numerous questions regarding 
the primary informal caregiver's perception of the need or lack of 
formal services and the reason why these services are not being used if 
they are perceived as needed (e.g., lack of affordability, lack of 
local availability, etc.). This enables policymakers to estimate (using 
various different criteria) the potential size and characteristics of 
the target population for public policy interventions to assist 
caregivers. As part of the Independent Budget (IB), the DAV believes VA 
should conduct a baseline national survey of caregivers of veterans. 
Considering the demographics of the enrolled and user population of the 
VA health care system, attention to caregivers has with reason been 
drawn to the needs of the aging veteran, but that group represents only 
one segment--although a large one--of those who receive and provide 
care; however, the survey should include a special emphasis on 
caregivers of OEF/OIF veterans. In addition, since caregiving is a 
lifespan experience, this survey should be conducted in regular 
intervals.
    Because health outcomes and quality of life of veterans with severe 
injuries and chronic disability also affect the family, a patient and 
family centered perspective is essential for quality improvement in 
redesigning long-term care. We believe policy makers must view family 
caregivers of severely injured servicemembers as a resource rather than 
as an unrecognized cost-avoidance tool. In programs where caregivers 
are assessed, they can be acknowledged and valued by practitioners as 
part of the health care team. Caregiver assessment can identify family 
members most at risk for health and mental health effects and determine 
if she or he is eligible for additional support. Effectively supporting 
caregivers can result in delayed placement of more costly nursing home 
care.\9\
---------------------------------------------------------------------------
    \9\ Mittelman, M. S., et al. A family intervention to delay nursing 
home placement of patients with Alzheimer disease. A randomized 
controlled trial. JAMA 276(21), 1725-1731.
---------------------------------------------------------------------------
    Assessment is a critical step in determining appropriate support 
services. Caregiver assessment is a systematic process of gathering 
information to describe a caregiving situation. It identifies the 
particular problems, needs, resources, and strengths of the family 
caregiver and approaches issues from the caregiver's perspective and 
culture to help the caregiver maintain his or her health and well-
being.\10\
---------------------------------------------------------------------------
    \10\ Journal of Social Work Education, Vol. 44, No. 3 (Fall 2008); 
Supplement. American Journal of Nursing 108(9), 38-39 (2008).
---------------------------------------------------------------------------
    The National Consensus Development Conference for Caregiver 
Assessment brought together widely recognized leaders in health and 
long-term care, with a variety of perspectives and expertise, to 
advance policy and practice on behalf of family and informal 
caregivers. The Family Caregiver Alliance's (FCA) National Center on 
Caregiving designed and convened this conference, held September 7-9, 
2005, in San Francisco. The conference generated a report \11\ on the 
fundamental principles and guidelines to advance caregiver assessment 
nationally and in each State, and to serve as a catalyst for change at 
Federal, State and local levels. As part of the IB, the DAV believes VA 
should conduct caregiver assessments that meet the principles outlined 
in the conference report. Furthermore, such assessments should be 
readily available to researchers for evaluation and analysis to guide 
VA policy and programs.
---------------------------------------------------------------------------
    \11\ Family Caregiver Alliance. Caregiver assessment: principles, 
guidelines and strategies for change. Report from a national consensus 
development conference. Volume I. San Francisco (CA): Family Caregiver 
Alliance; 2006 Apr. 43 p. Retrievable from: http://www.caregiver.org/
caregiver/jsp/content/pdfs/v1_consensus.pdf.

---------------------------------------------------------------------------
Conclusion

    The DAV is concerned that in the immediate and foreseeable future, 
caregiving support services will likely continue to be developed and 
provided in piecemeal fashion hampered by existing barriers without 
Congressional action. Such an approach carries inherent risk and 
pitfalls against which severely injured veterans and their family 
caregivers must unfairly struggle. In a May 9, 2007, hearing before 
this Subcommittee on the State of VA's long-term care program, we 
testified that the present State of that program is now lagging behind 
its rich history as an early leader in caring for aging veterans and 
their caregivers, and is in danger of falling behind non-VA health care 
systems.\12\ There is a striking contrast when comparing VA's current 
caregiver support to existing national policies designed to support 
caregivers such as the AoA Alzheimer's Disease Demonstration Grants to 
States (ADDGS) program, the Family and Medical Leave Act, and the Cash 
and Counseling (consumer directed care) program. We applaud AoA for 
granting $19 million to VA to provide health care consumer direction in 
choosing their home and community-based services, which we hope is a 
symbol of a progressive movement in VA's long-term care program. In 
this vein, we urge VA and Congress to address the barriers outlined in 
this testimony. We also recommend VA adopt a more robust and 
statistically valid survey such as the NTLCS than that it has used in 
the past to guide the creation and assess the effectiveness of a 
standardized and comprehensive package of support services for 
caregivers.
---------------------------------------------------------------------------
    \12\ http://www.veterans.house.gov/hearings/hearing.aspx?NewsID=24.
---------------------------------------------------------------------------
    Mr. Chairman, in the absence of family caregivers, an even greater 
burden of direct care would fall to VA at significantly higher cost to 
the government and reduced quality of life for these veterans who have 
sacrificed so much. If VA is to continue to provide care to veterans in 
the least restrictive settings, it must improve current services and 
adopt new effective evidence-based interventions to ensure family 
caregivers do not remain untrained, unpaid, unappreciated, undervalued, 
and exhausted by their duties.

                                 
          POST-HEARING QUESTIONS AND RESPONSES FOR THE RECORD
                                     Committee on Veterans' Affairs
                                             Subcommittee on Health
                                                    Washington, DC.
                                                      June 10, 2009
Honorable Eric K. Shinseki
Secretary
U.S. Department of Veterans Affairs
810 Vermont Avenue, NW
Washington, DC 20240

    Dear Secretary Shinseki:

    Thank you for the testimony of Dr. Madhulika Agarwal, Chief Patient 
Care Services Officer of the Veterans Health Administration at the U.S. 
House of Representatives Committee on Veterans' Affairs Subcommittee on 
Health Oversight Hearing on ``Meeting the Needs of Family Caregivers of 
Veterans'' that took place on June 4, 2009.
    Please provide answers to the following questions by July 22, 2009, 
to Jeff Burdette, Legislative Assistant to the Subcommittee on Health.

        1.  What is the VA's response to testimony provided by Jill 
        Kagan on the administrative barriers to veterans and their 
        family caregivers accessing respite care? I would also like the 
        VA to provide a written summary of the copayment policy for the 
        range of respite care provided by the VA and the rationale for 
        this copayment policy. In addition, please share the total 
        copayment amount collected in each of FY 2003 to FY 2008
        2.  Dr. Agarwal's testimony states that temporary lodging for 
        caregiver accompanying a veteran to a VA health care facility 
        is provided on a first-come first-serve basis and that the VA 
        Fisher house program served 5,949 families in 2008. Does VA 
        track how many caregivers who would like to utilize this 
        service are turned away due to demand?
        3.  The eight caregiver pilot programs mentioned in Dr. 
        Agarwal's testimony will conclude this fall and VA will review 
        the effectiveness of these programs. What is VA's timetable for 
        determining whether these programs were effective and deserving 
        of broader implementation?
        4.  In Dr. Agarwal's testimony, she stated that respite care 
        services are planned in advance. How far in advance must the 
        caregiver arrange for the provision of respite care? What 
        options does VA offer a caregiver in need of immediate service?
        5.  Please elaborate on the new medical foster program. How 
        does VA reach out to communities to identify participants? To 
        this point, has VA been successful in finding volunteers for 
        the program?
        6.  Please outline the relationship between the Department of 
        Defense's Recovery Care Coordinators and VA's Federal Recovery 
        Coordinators. How do they work together to ensure a seamless 
        transition from DoD to VA for the servicemember and their 
        caregiver?

    Thank you again for taking the time to answer these questions. The 
Committee looks forward to receiving your answers by July 22, 2009.

            Sincerely,

                                                 MICHAEL H. MICHAUD
                                                           Chairman

                              ----------                              

      Questions for the Record Hon. Michael H. Michaud, Chairman,
     Subcommittee on Health, House Committee on Veterans' Affairs,
    June 4, 2009, Meeting the Needs of Family Caregivers of Veterans
    Question 1: What is VA's response to testimony provided by Jill 
Kagan on the administrative barriers to Veterans and their family 
caregivers accessing respite care? I would also like VA to provide a 
written summary of the copayment policy for the range of respite care 
provided by VA and the rationale for this copayment policy. In 
addition, please share the total copayment amount collected in each 
year of FY 2003 to FY 2008.

    Response: Ms. Kagan provided a useful review of barriers to respite 
care in the Department of Veterans Affairs (VA) and community sectors. 
VA agrees that additional steps need to be taken to enhance the 
Department's respite care program, particularly in home and community 
based care (H&CBC) settings. VA is studying a number of policy changes 
that will reduce the barriers to H&CBC respite services, including 
greater collaboration with the administration on Aging's National 
Respite Care Program. These changes will be reflected in a new policy 
handbook specifically addressing respite care at home and in the 
community to be published this fiscal year.
    Co-payments for extended care services, including respite care, are 
mandated by 38 USC 1710B. Veterans are exempt from extended care 
copayments for compensable service-connected care. All other Veterans 
with incomes greater than the maximum VA pension rate for a single 
Veteran are liable for a copayment. Co-payments for extended care 
services are outlined at 38 CFR 17.111. The institutional respite care 
copayment is a maximum of $97.00 per day. This is a sliding scale 
copayment, based on income, assets, dependents and allowable expenses. 
The $97.00 maximum is the same as the nursing home copayment maximum, 
and is appropriate since most institutional respite care is provided in 
nursing home beds. The $97.00 amount reflects the Medicare copayment 
level for nursing home care in 2003, which is still the current rate.
    The copayment amount for H&CBC or non-institutional respite care is 
$15.00 per day. Veterans are also exempt from this copayment for 
compensable service-connected care. The $15.00 amount reflects the co-
payment amount for basic outpatient visits. VA recognizes that State 
respite care programs have voluntary copayment structures.

    The data below displays total respite care collections, by setting, 
for fiscal year (FY) 2006--FY 2008:

         Respite Care Collections:

         FY 2006
         Institutional Care: $32,464.00
          Non-Institutional Care: $384.00

         FY 2007
         Institutional Care: $65,347.00
         Non-Institutional Care: $898.00

         FY 2008
         Institutional Care: $65,309.00
         Non-Institutional Care: $6,495.00*

         *Note: Increase reflects growth in average census (118 in FY 
        2006 to 417 in FY 2008) and expanded co-pay collections 
        efforts.

    Question 2: Dr. Agarwal's testimony states that temporary lodging 
for a caregiver accompanying a Veteran to a VA health care facility is 
provided on a first-come, first-serve basis and that the VA Fisher 
House program served 5,949 families in 2008. Does VA track how many 
caregivers would like to utilize this service are turned away due to 
demand?

    Response: Caregivers and families who cannot be accommodated in a 
Fisher House are referred for accommodations in the community at no 
cost to them or at a discount cost. VA tracks the number of caregivers 
and families referred for accommodations in the community on a monthly 
basis. In FY 2008, 3,078 families were referred for accommodations in 
the community. VA continues to explore options for these services and 
is pleased that the Fisher House Foundation is now building larger 20 
bedroom homes to accommodate more families. In addition to the existing 
13 VA Fisher Houses, seven others are under construction with expected 
completion dates in 2010.

    Question 3: The eight caregiver pilot programs mentioned in Dr. 
Agarwal's testimony will conclude this fall and VA will review the 
effectiveness of these programs. What is VA's timetable for determining 
whether these programs were effective and deserving of broader 
implementation?

    Response: VHA's Patient Care Services Caregiver Advisory Board 
(PCSCAB) will review the effectiveness of the eight caregiver pilot 
programs and determine whether these programs should be expanded for 
the first quarter of 2010. The PCSCAB is expected to complete its 
review of these programs and make recommendations by November 30, 2009. 
VA will prepare a final report of the caregiver pilot programs and 
submit it to Congress by December 31, 2009.

    Question 4: In Dr. Argarwal's testimony, she stated that respite 
care services are planned in advance. How far in advance must the 
caregiver arrange for the provision of respite care? What options does 
VA offer a caregiver in need of immediate service?

    Response: Respite care services in VA's community living centers 
(CLC) are generally scheduled 30 to 90 days in advance to allow staff 
to assess patient needs, assure funding and services are available. 
CLC-based respite care programs also have flexibility to address urgent 
or emergency respite-care needs. In addition, most VA medical centers 
offer immediate respite services in home, community-based settings and 
in community nursing homes.

    Question 5: Please elaborate on the new medical foster program. How 
does VA reach out to communities to identify participants? To this 
point, has VA been successful in finding volunteers for the program?

    Response: The medical foster home (MFH) expansion initiative, 
Support at Home--Where Heroes Meet Angels, began through supplemental 
funding provided to 33 sites in May 2008. MFH creates an alternative to 
nursing home for long-term care. MFH is a unique partnership of adult 
foster home and a VA interdisciplinary home care team providing long-
term care in a personal home for Veterans who meet a nursing home level 
of care.
    As of May 31, 2009, VA has 22 operational sites identifying 
Veterans who are appropriate for and interested in MFH, and is finding 
suitable caregivers and homes. VA has placed 487 Veterans in MFHs since 
the program began in 2000 as a pilot in Little Rock, Arkansas.
    VA seeks and identifies MFH caregivers in the communities. The MFH 
caregivers open their homes to Veterans voluntarily; they do receive 
compensation from the Veteran for room, board, and daily supervision 
and personal assistance they provide to the Veteran. VA reaches out to 
the communities to identify able and dedicated caregivers through a 
variety of mechanisms, including discussing the program with Veteran's 
organizations and the community. VA also uses local media outlets 
including community newspapers and television. Other referrals may come 
from the individuals themselves or from other VA and non-VA personnel.

    Question 6: Please outline the relationship between the Department 
of Defense's Recovery Care Coordinators (RCC) and VA's Federal Recovery 
Coordinators (FRC). How do they work together to ensure a seamless 
transition from DoD to VA for the servicemembers and their caregiver?

    Response: Both programs provide care coordination for qualifying 
servicemembers and Veterans. Recovery care coordination (RCC) is a 
Department of Defense (DoD) program with oversight residing in the 
Transition Policy and Care Coordination Office. It works with 
servicemembers who:

          Have a serious injury or illness;
          Are unlikely to return to duty within a time 
        specified by each servicemember's Military Department; and
          May be medically separated from the military.

    The Federal Recovery Coordination program (FRCP) is a joint program 
of the DoD and VA with its administrative home at VA. It is designed to 
provide oversight and coordination for those servicemembers who:

          Have a severe/catastrophic injury or illness;
          Are highly unlikely to return to duty; and
          Will most likely be medically separated from the 
        military.

    Both programs develop customized recovery plans; FRCP uses the 
Federal individual recovery plan (FIRP), and RCC uses the comprehensive 
recovery plan (CRP). The recovery plans are based on the servicemember 
or Veterans goals, with input from their family or caregiver, and 
Members of the multidisciplinary team. These plans monitor and track 
the services, benefits and resources needed to accomplish the 
identified goals. The number and types of goals relate to the 
individual's medical problems, the stage of recovery, and the holistic 
needs of the client and family. The recovery coordinators work across 
all agencies with a variety of case managers, providers, and other 
individuals to make sure the goals are reached.
    FRCs and RCCs are frequently co-located at military treatment 
facilities. They work together to ensure the right benefits and care 
are provided at the right time for servicemembers and Veterans enrolled 
in the programs. Both Departments will continue to work together to 
ensure that the needs of our servicemembers and Veterans are met in a 
timely, effective and compassionate manner.

                                 
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