[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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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\
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\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.
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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.
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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.
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\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.
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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/.
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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.
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\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.
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\3\ Institute of Medicine, ``Retooling for an Aging America:
Building the Health Care Workforce.'' 2008.
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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.
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\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).
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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.
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\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.
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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.
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\6\ The Gerontologist. 47 (3), 365-377.
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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.
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\7\ Arkansas, Connecticut, Florida, Massachusetts, Michigan, New
Jersey, New York, Texas, Virginia, and Washington.
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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.
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\8\ U.S. Senate Committee on Veterans' Affairs hearing, ``Pending
Health-Related Legislation,'' April 22, 2009.
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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\
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\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.
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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\
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\10\ Journal of Social Work Education, Vol. 44, No. 3 (Fall 2008);
Supplement. American Journal of Nursing 108(9), 38-39 (2008).
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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.
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\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.
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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.
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\12\ http://www.veterans.house.gov/hearings/hearing.aspx?NewsID=24.
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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.