[House Hearing, 112 Congress]
[From the U.S. Government Publishing Office]
IMPLEMENTATION OF CAREGIVER ASSISTANCE: MOVING FORWARD
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HEARING
before the
SUBCOMMITTEE ON HEALTH
of the
COMMITTEE ON VETERANS' AFFAIRS
U.S. HOUSE OF REPRESENTATIVES
ONE HUNDRED TWELFTH CONGRESS
FIRST SESSION
__________
JULY 11, 2011
__________
Serial No. 112-23
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Printed for the use of the Committee on Veterans' Affairs
_____
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68-452 WASHINGTON : 2011
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COMMITTEE ON VETERANS' AFFAIRS
JEFF MILLER, Florida, Chairman
CLIFF STEARNS, Florida BOB FILNER, California, Ranking
DOUG LAMBORN, Colorado CORRINE BROWN, Florida
GUS M. BILIRAKIS, Florida SILVESTRE REYES, Texas
DAVID P. ROE, Tennessee MICHAEL H. MICHAUD, Maine
MARLIN A. STUTZMAN, Indiana LINDA T. SANCHEZ, California
BILL FLORES, Texas BRUCE L. BRALEY, Iowa
BILL JOHNSON, Ohio JERRY McNERNEY, California
JEFF DENHAM, California JOE DONNELLY, Indiana
JON RUNYAN, New Jersey TIMOTHY J. WALZ, Minnesota
DAN BENISHEK, Michigan JOHN BARROW, Georgia
ANN MARIE BUERKLE, New York RUSS CARNAHAN, Missouri
TIM HUELSKAMP, Kansas
Vacancy
Vacancy
Helen W. Tolar, Staff Director and Chief Counsel
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SUBCOMMITTEE ON HEALTH
ANN MARIE BUERKLE, New York, Chairwoman
CLIFF STEARNS, Florida MICHAEL H. MICHAUD, Maine, Ranking
GUS M. BILIRAKIS, Florida CORRINE BROWN, Florida
DAVID P. ROE, Tennessee SILVESTRE REYES, Texas
DAN BENISHEK, Michigan RUSS CARNAHAN, Missouri
JEFF DENHAM, California JOE DONNELLY, Indiana
JON RUNYAN, New Jersey
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
__________
July 11, 2011
Page
Implementation of Caregiver Assistance: Moving Forward........... 1
OPENING STATEMENTS
Chairwoman Ann Marie Buerkle..................................... 1
Prepared statement of Chairwoman Buerkle..................... 29
Hon. Michael H. Michaud., Ranking Democratic Member.............. 2
Prepared statement of Congressman Michaud.................... 29
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WITNESSES
U.S. Department of Veterans Affairs:
Cheryl Cox, LCSW, Caregiver Support Coordinator, Syracuse
Department of Veterans Affairs Medical Center................ 12
Mary Fullerton, LCSW, Caregiver Support Coordinator, North
Florida/South Georgia Veterans Healthcare System............. 14
Deborah Amdur, LCSW, ACSW, Chief Consultant, Care Management
and Social Work Service, Veterans Health Administration...... 22
Prepared statement of Ms. Amdur............................ 37
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Schulz, Debbie, Friendswood, TX................................ 3
Prepared statement of Ms. Schulz............................. 30
Wounded Warrior Project, Anna Frese, Director, Warrior Support
Program...................................................... 10
Prepared statement of Ms. Frese.............................. 33
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SUBMISSIONS FOR THE RECORD
Disabled American Veterans, Adrian Atizado, Assistant National
Legislative Director, statement................................ 40
Iraq and Afghanistan Veterans of America, Tom Tarantino, Senior
Legislative Associate, statement............................... 47
National Military Family Association, Barbara Cohoon, Ph.D.,
R.N., Government Relations Deputy Director, statement.......... 50
Paralyzed Veterans of America, statement......................... 56
Wounded Warrior Project, statement............................... 59
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MATERIAL SUBMITTED FOR THE RECORD
Post-Hearing Questions and Responses for the Record:
Hon. Michael H. Michaud, Ranking Democratic Member,
Subcommittee on Health, Committee on Veterans' Affairs to
Deborah Amdur, LCSW, Chief Consultant, Care Management and
Social Work, Veterans Health Administration, U.S. Department
of Veterans, letter dated July 13, 2011, and VA responses.... 72
IMPLEMENTATION OF CAREGIVER ASSISTANCE: MOVING FORWARD
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MONDAY, JULY 11, 2011
U.S. House of Representatives,
Committee on Veterans' Affairs,
Subcommittee on Health,
Washington, DC.
The Subcommittee met, pursuant to notice, at 4:00 p.m., in
Room 334, Cannon House Office Building, Hon. Anne Marie Buerkle
[Chairwoman of the Subcommittee] presiding.
Present: Representatives Buerkle, Roe, Benishek, Runyan,
and Michaud.
OPENING STATEMENT OF CHAIRWOMAN BUERKLE
Ms. Buerkle. Good afternoon. The Subcommittee on Health
will come to order.
Four months ago today, this Subcommittee held our first
hearing of the year to discuss why the U.S. Department of
Veterans Affairs (VA) had failed to implement the Caregivers
Assistance component of Public Law 111-163. At that hearing, it
was clear to me that VA must go back and address some serious
deficiencies with the Department's initial implementation plan,
particularly the strict eligibility requirements, in order to
get this important program up and running.
I think we all agreed that day at that hearing, that time
is of the essence, and our veterans and their caregivers need
us now, not later.
Today we meet again to determine the progress the
Department has made in those intervening months to adjust its
implementation plan and to do right by our veterans and their
caregivers who have already given so much to us all. In
response to the concerns of Members, advocates and
stakeholders, VA changed its eligibility requirements and
expedited the implementation of caregivers' benefits by
publishing an interim final rule (IFR) on May 5, 2011. The IFR
allowed the Department to accelerate the Federal rulemaking
process by immediately implementing the program prior to the
consideration of public comments and the issuance of a final
rule.
As the daughter of a full-time caregiver, I understand the
profound impact injury can have, not only on the patient or the
injured but also upon his or her family. Time is of the essence
for these families, many of whom have sacrificed their
personal, professional and financial security in order to take
on full-time caregiving responsibilities for their veteran
family member. We owe it to these men and women to get it
right, and we will not rest until we do.
Today we will hear from Debbie Schulz, a full-time
caregiver for her son Steven who was injured in Iraq in 2005.
She will speak to her experience applying for and obtaining
services from VA.
We will assess the actions VA has taken to date to meet the
intent of the law and the changes that still need to be
considered prior to issuing the final rule.
I want to express our appreciation on behalf of the Health
Subcommittee to all of you for being here today. I am very much
looking forward to our discussion.
I now yield to the Ranking Member, Mr. Michaud, for any
opening statements he might have.
[The prepared statement of Chairwoman Buerkle appears on
p. 29.]
OPENING STATEMENT OF HON. MICHAEL H. MICHAUD
Mr. Michaud. Thank you very much, Madam Chair.
I would like to thank you for holding this very important
hearing today on the Caregivers and Veterans Omnibus Health
Care Service Act of 2010. Today's hearing is a follow-up to a
March 11, 2011, Subcommittee on Health hearing on this very
important issue where concerns were raised regarding delays in
the roll-out of the implementation plan. The narrow criteria
and the eligibility for the benefits was a major concern of
this Committee.
At the beginning of July, the Department of Veterans
Affairs issued its very first payment to family caregiver
veterans. These family caregivers were the first to complete
their caregiver training under this comprehensive assistance
for family caregivers program, and VA will send out more than
$430,000 in stipend payments to nearly 200 recipients this
month alone.
I am pleased that the veterans and caregivers are finally
beginning to receive some of the services required under the
law that we passed. I am pleased that the criteria for
eligibility of these benefits have been expanded to be more in
line with what Congress intended.
However, I would also like to hear more from the witnesses
today about how the plan is being implemented in the field,
what issues remain, and what oversight is being conducted by
Central Office, and how can we ensure that this program
successfully is implemented so that veterans and their
caregivers receive the critical benefits without further delay.
The testimony we have received contains many concerns with
the interim final rule, and I would like to hear from the VA on
incorporating some of the suggestions in the final rule.
So, Madam Chair, once again, I want to thank you very much
for having this hearing and look forward to continue to keep an
eye on what's happening as we move forward with the caregivers
legislation.
And I yield back the balance of my time.
[The prepared statement of Congressman Michaud appears on
p. 29.]
Ms. Buerkle. Thank you very much. I would like to now
invite our first panel to the witness table. Joining us this
afternoon is Debbie Schulz. Debbie is a full-time caregiver for
her son, Steven, who was wounded in Fallujah in 2005 when an
improvised explosive device (IED) hit the Humvee in which he
was traveling.
Ms. Schulz, I know that this has been a very personal
crusade for you, and we thank you so much for taking the time
to come here today to give us your testimony and to answer our
questions. Please go ahead with your opening statement.
STATEMENT OF DEBBIE SCHULZ, FRIENDSWOOD, TX (CAREGIVER)
Ms. Schulz. Chairwoman Buerkle, Ranking Member Michaud and
Members of the Subcommittee, thank you for allowing me to share
with you the experience I have had with the Caregiver
Assistance Program, and for your vital leadership in pressing
to assure that the law is properly implemented.
Great progress has been made toward this, and my son Steven
and I are already benefitting from the program. I am grateful
for the assistance. And as Steven's caregiver, I cannot
overemphasize the program's importance to his ongoing recovery
and continued well-being.
But while the program has helped us, I can see where gaps
in the VA regulation will and already have created problems for
caregivers.
Our journey, as you have said, began 6 years ago when
Steven suffered a severe traumatic brain injury (TBI) on April
19, 2005. He was in Fallujah when the IED exploded outside his
Humvee. He was 20 years old. The injury left him with many
physical and cognitive deficits. He has profound left-sided
weakness with no functional use of his left arm. He walks
slowly and only with assistance. Shrapnel blinded his right
eye, and his brain does not perceive the left field of vision.
In certain situations, Steven may need a wheelchair or use
it for convenience, but he can't push it on his own because of
the profound weakness on his left side. And a power chair is
not used because of his visual deficits.
Steven's thinking is somewhat slower, and due to the
frontal lobe damage, he has some impaired impulse control. And
he might blurt out things that are inappropriate. His affect is
flat, and he has difficulty interpreting social cues. His
speech is often difficult to understand. His attention span is
short, and he has some memory problems. Without the ability to
think, what do I do next, he does not feel comfortable being
left alone for more than 30 minutes at a time.
Steven's life has changed since his injury, and of course,
my life has too. I had been working as a special education
teacher when he was injured. My husband and I, then 51 and 49,
were preparing to become empty nesters. Instead, I became
Steven's primary caregiver, advocate, life skills coach,
chauffeur, secretary, bookkeeper, teacher, drill instructor,
medical assistant, physical, occupational, speech therapist and
on and on.
Leaving the workforce has created a financial hardship, and
our world and that of our then 18-year-old daughter and 15-
year-old son has changed profoundly.
I applied for the Caregiver Program on May 9, having been
alerted by my VA social worker and others. Getting the
application and completing it was easy. The one glitch I
encountered was an alarming uncertainty regarding CHAMPVA
health coverage, which was contingent on having no other
insurance. With my health coverage about to be terminated, I
felt trapped in an awkward limbo that went unresolved for
several weeks. I was led to think I would not be eligible for
CHAMPVA unless there was a total break in my coverage.
Within days of applying for the caregiver program, I was
advised that the VA had received the application and the next
step was to complete training and have a home visit. After I
completed both of those, I received verbal confirmation that I
had been approved.
On July 5, I received my first stipend check. I assume from
the amount, that it represents a maximum payment. But unlike
other caregivers, I have not received any written or verbal
notice on how many hours were approved and have no specific way
of knowing whether those determinations were appropriate.
We caregivers do stay in touch with one another, and I do
have concerns about how the rules may affect many others. VA,
to its credit, has implemented a streamlined system for
processing applications. But it's important that the
determinations and decisions are fair and appropriate, not
simply fast.
In preparing my remarks, I spoke with many other
caregivers, and already disparities in determinations are being
found. The weak link, in my view, are flaws in the rules VA
published in early May. The stipend is a good example of this.
For the many families for whom finances are tight, the stipend
is very important. But it is clear to me that the rules for
determining the stipends need work. For example, I know a
veteran who suffered the same injury as Steven but made a
better recovery physically. Though he has far fewer physical
limitations than Steven, he still has post-traumatic stress
disorder (PTSD) and TBI cognitive issues. But his wife will get
a stipend that only covers 10 hours of caregiving a week,
amounting to about $15 a day.
In our case, VA's methodology resulted in scoring Steven's
needs at a relatively high level, and I believe this is
probably because he needs assistance with both physical and
cognitive issues. Since VA's scoring methodology calls for
scoring each different impairment, his total score would be
higher than say a veteran who has just cognitive issues. The
fallacy in this methodology is that a veteran with TBI whose
extreme lack of judgment, for example, makes him a safety risk,
is not just a safety risk for 10 hours a week.
Caregiver friends of mine in this situation are almost
always by their veterans' side providing oversight and
assistance. There's something badly wrong with the methodology
that results in a conclusion that a veteran who is a safety
risk, whether it be for suicidality, impaired judgment or other
circumstances, needs only 10 or 25 hours of caregiving a week.
Clearly, these rules need close scrutiny, and some need some
major change.
In closing, let me thank you, on behalf of my family and
other caregivers across the country, for your sincere efforts
to make this program a success. The problems I've highlighted
in my remarks and in my full statement can be solved. Doing so
will strengthen the program and improve the well-being of our
wounded warriors.
Thank you for the privilege of testifying, and I would be
happy to answer any questions you may have.
[The prepared statement of Ms. Schulz appears on p. 30.]
Ms. Buerkle. Thank you very much for your testimony here
today. I know I speak for all of my Subcommittee Members as
well, thank you for what you do for your son, and please extend
our gratitude to him for his service and sacrifice on behalf of
this Nation.
Ms. Schulz. I will. Thank you.
Ms. Buerkle. I would like to just talk a little bit about
the application process. You mentioned that you felt that it
was streamlined and seemed pretty efficient.
Ms. Schulz. Yes.
Ms. Buerkle. At what point after you applied, did you start
to feel, if you felt any, some obstacles or some difficulties?
Ms. Schulz. Well, I think at this initial phase, it was
really pretty easy. And I have to give the VA credit for
getting it up and going. Where it broke down was in the
communicating back to me. For instance, I still haven't
received how many hours, I haven't received any sort of written
or really verbal notification of--I just received a check.
And for other caregivers, it may be important if, say, they
got approved for 10 hours, they need to know that, so if they
don't agree, they can then have some recourse to come back and
say, we need to rethink this or appeal it.
So, in my case, it was pretty efficient. The home visit
wasn't exactly what I hoped for. But aside from that, I think
the process was good.
Ms. Buerkle. Do you know if the decision to participate in
caregivers' assistance and for you to be able to get a stipend,
was contingent upon the home visit or were there any other
factors?
Ms. Schulz. My understanding, and of course, I am no
expert, but my understanding was it was the home visit as well
as his care team. And I am real lucky in that our VA care
coordinator has been working with Steven since he was first
injured. She was his social worker from the early days, so she
knows our situation and knows the care team.
Ms. Buerkle. Have you used any of the respite services that
the Caregivers Assistance Program provides?
Ms. Schulz. Not since the Caregiver Act has been
implemented. I have used in the past, and it has been
cumbersome and less than ideal for my situation. I am hoping
that with this Caregivers Act, that it will be age appropriate
and it will be home based to the needs of what the veteran
needs.
The program that I have used previously, you know, they can
come out. They can work Monday through Friday. They can work 9
to 5. Well, when I am gone, that doesn't always fit my life. I
mean, like I am here now, and my youngest son is actually doing
the caregiving. But if we had to, you know, juggle schedules,
and he may have to work--he works part time--I might need
somebody to cover evenings. I might need, you know, other times
besides between 9 to 5. So I am hoping that with this new
program, that it will take into account the real needs of the
veteran.
Ms. Buerkle. Thank you.
Ms. Schulz, you mentioned that you noticed some
disparities, from other caregivers that you talked to about the
process and maybe some of them received an explanation for how
much of a stipend they were receiving. What were the other
disparities? My concern is that there is not a standardized
effort here, and that the process needs standardizing.
Ms. Schulz. And that is exactly my concern. While the
application process has been easy for most people to get in,
there have been instances of, well, let's just say, within the
State of Texas, within 200 miles of me, another caregiver,
whose son has a TBI, as well as a spinal cord injury, is unable
to transfer out of his wheelchair by himself, cannot dress
himself, and she was awarded 25 hours of caregiving a week. She
received written notice. She knew--that's how I found out the
treatment team was supposed to do the determination because she
told me her PACT team. I didn't know what that was. So I learn
a lot from other caregivers. But she told me that her PACT team
made the determination, and she got 25 hours a week. How can
that be right? And that sort of disparity is really
discouraging to caregivers and veterans.
Some of the other disparities in just how things are
playing out. Another veteran applied, his wife applied, and
they couldn't get a doctor, the VA social worker couldn't get a
doctor to sign off on the initial application. His primary care
doctor at the VA wouldn't sign off it. This is a veteran who
has a TBI, as well as a spinal cord injury and hearing loss,
and she is his caregiver and has been for several years. And I
couldn't understand that. That's the type of disparity that
really worries me and other caregivers.
Ms. Buerkle. Thank you very much.
My time has expired. I now yield 5 minutes to the Ranking
Member, Mr. Michaud.
Mr. Michaud. Thank you very much, Madam Chair.
You mentioned that the home visit wasn't what you expected
it to be. What did you expect the home visit to be? And why, is
there anything that stuck out that they did that they should
not have done or----
Ms. Schulz. Well, my understanding of the home visit was to
make sure that the home was appropriate and to also assess my
needs as well as Steven's needs. And being a social worker in
another life, I know, sort of how assessments should go, so
that may have jaded me.
But he came in and didn't know who the veteran was. He
thought I was the veteran at first. And I was, like, no Steven.
So he had not read the chart, which was a sort of red flag to
me.
The second thing was after he was doing, going through
making sure I know about infection control, nutrition, all
these things that I have been doing for 6 years now, and Steven
has obviously been healthy and happy and at a good weight, not
overweight or underweight, then he asked me if I know about
catheter care. And Steven has never been at home with a
catheter. Now for some veterans, that's an issue and I would
need to know that. But I would like for the VA to realize that
those home visits are a real chance to come out and see what
the needs of the veteran and the caregiver are. That's what I
was expecting.
Mr. Michaud. As the VA starts to roll out its peer support
mentoring program over the next year, do you have any
suggestions on how this program should be implemented?
Ms. Schulz. I have to be honest. I don't know what the peer
support monitoring program is. Is that other veterans that will
be----
Mr. Michaud. Yes.
Ms. Schulz. I have not heard about it.
Mr. Michaud. Okay. Do you find that the VA hotline and
caregiver Web site is user friendly? Have you used that?
Ms. Schulz. I used the hotline initially when it first was
announced at the VA program, and they were not ready to be
answering questions at that time. They maybe rolled it out a
little prematurely because the questions were all about the
Caregiver Act and when it was going to be implemented, and they
did not know at the time.
And I find it easier, actually, and more effective to call
directly to my son's social worker, who is now the care
coordinator, or to my son's Federal recovery coordinator.
Mr. Michaud. Do you think that the outreach to spread the
word about the caregiver program has been sufficient?
Ms. Schulz. I think that is an area where the VA has done
excellent work because the day it was available, I had calls
from my social worker and also an email, and there was also
lots of information that was out in the public. It was on the
social media sites, and so I think that that was an area they
did very well in.
Mr. Michaud. You had mentioned that the timeliness of
getting approved was pretty quick. The implementation was not
as good as possible. The VA has been trying to get them
completed within 30 days. Was your process completed within
that time frame?
Ms. Schulz. It was close. It was very close. I have to say
this is the fastest I have ever seen the VA move.
Mr. Michaud. And my last question, if you had to make one
change within the system, what would be the change that you
would suggest?
Ms. Schulz. One change? You are going to limit me? I think
I would really tighten up those disparities so that that
artificial cap of hours, because there are lots of veterans
that need more than 40 hours. And what are we doing for them?
And how can you--I mean, that disparity is so discouraging. And
so really, working on that rule to get that right so that it is
not just an artificial and so it is right across the country.
Mr. Michaud. Great. Well, thank you very much, and please
thank your son for me for his service to this great Nation of
ours. I want to thank you, as well, for all the efforts that
you are putting in to taking care of your son, as well as being
here today to let us know how we can improve the legislation
that was enacted. I yield back the balance of my time.
Ms. Buerkle. Thank you.
I now yield 5 minutes to the gentleman from Michigan, Dr.
Benishek.
Mr. Benishek. Thank you, Madam Chairman.
Ms. Schulz, thank you so much for coming today. I just had
a few questions to kind of clarify your situation. It seems
like you must have had a relationship with the VA through your
social worker that you know there and you have been taking care
of. I mean, this is not the fellow that came out to review your
situation for the home visit; this is somebody else then,
right?
Ms. Schulz. He was an RN that worked with the spinal cord
unit is all I know, and I don't know if it is a new position
for him, but he had not read the chart and had no relationship
with us.
Mr. Benishek. So did somebody come to your house to sort of
evaluate? I mean, it would seem like your social worker that
you have been working with would know what you are doing with
your son on a daily basis, the care that he requires. So did
somebody come out to just see how it's going at the house to
observe you for a day or anything like that? No?
Ms. Schulz. Well, yes. I mean, he came out to the house,
and I have heard instances where they went through the
refrigerator. I heard one veteran who was told they didn't have
enough food in the house. This particular RN did not look at
our pantry, did not look in our refrigerator, but asked if we
had smoke detectors, you know, basic safety things, which, you
know, 6 years ago, would have made sense to me when he was
very, very frail, and he was first sent home. At this point it
was a little insulting, actually.
But I think that a home visit could be a real opportunity
to find out what the veteran needs and what the caregiver
needs.
Mr. Benishek. Right. Do you have an ongoing conversation
with the VA about what is happening with your son? Is it
through the social worker? I mean, do you speak to them on a
weekly basis then?
Ms. Schulz. Not weekly. Probably, we talk to our Federal
recovery coordinator once a month. I contact his social worker
as needed. We see his doctors, depending on which doctor,
probably every 3 to 6 months.
Mr. Benishek. All right. How far away are you from a
veteran facility that your son could get care? Where does he
have to go to get care?
Ms. Schulz. Our VA is about 30, 35 miles from us.
Mr. Benishek. Okay. Is there anybody coming in to help you
do any of this care on a regular basis? Is there a physical
therapy or anything involved?
Ms. Schulz. No. Not coming to the house, no.
Mr. Benishek. It just seems to me that there should be a
little more teamwork involved in helping the care progress, or
and then, you know, making sure that you can get the proper
amount of hours, I mean, just observing what you do on a daily
basis it seems like it would be fairly easy to figure out by
just observing what you do for a day or even a half a day. And
it is a little disappointing to me to hear that you didn't get
a letter explaining what the benefit would be.
Ms. Schulz. And that has, I just have to share with you.
That has always been my contention. If somebody from the VA
came and spent 4 hours with me, especially early, early on,
because I was requesting help back then and it wasn't
available, they would know just how much and how needy he was.
So for future veterans, I think your point is exactly
right. Somebody needs to really assess what the veteran needs
are in a home setting, and that teamwork is crucial.
Mr. Benishek. Well, it just seems to me that there could be
with the social worker that, you know, a mechanism for you to
communicate what you need and maybe somebody could come to the
house occasionally to help you or give you a morning off or
something like that.
Ms. Schulz. Prior to this law, nothing was available that
was appropriate for this young age veteran who is active and
doing things but needs help in everything he does. But the home
help assistance that was offered to me was not age appropriate.
It was not reliable. It was just not right for him, and most
young veterans. It is set up for a geriatric population.
Mr. Benishek. Right. How do you communicate with the other
caregivers that you have been in contact with? Are these people
that you have met at the hospital, during your going back----
Ms. Schulz. People we have met at the hospital, at
different veterans functions, just along the road you meet
other veterans, and we use social media and telephone and e-
mail.
Mr. Benishek. Okay. Well, I really appreciate your coming
and giving us a picture of what you are going through here. I
think it can be helpful going forward to, not only for
yourself, but other caregivers throughout the country. So I
really do appreciate you coming.
And I yield back the remainder of my time.
Ms. Buerkle. Thank you, Dr. Benishek.
I now yield 5 minutes to the gentleman from New Jersey, Mr.
Runyan.
Mr. Runyan. Thank you, Madam Chair.
And Ms. Schulz, thank you for the time you spend taking
care of your son and for his service to this great country. You
said earlier you really don't know what you are entitled to,
you have gotten no communication back from the VA. Do you even
know if you have a correct rating? Have you reached out to them
since this process, from them--not even, like you said, you
don't have a written or a verbal commitment from them. Have you
reached out to them to see if they just forgot about you?
Ms. Schulz. I have not, because I received the check on
July 5 and so I was doing holiday stuff and so I have not
emailed them.
Mr. Runyan. Okay. Because, you know, going into some of
your further testimony, and even some of the questions you have
asked, it has been kind of--in the VA Committee, we always talk
about the stakeholders being involved. And I think you have
brought it up with the home inspection, it is a premier
opportunity for that to happen, to really see what is going on
there. And you know, it is not about--well, it seems like the
VA approach is, well, you are not going to be entitled to this
because you don't have this need, that need, this need. It is
more of yourself, seeing the relationship between you and your
son, not as mother and son, as caretaker and patient. And I
think that is a unique opportunity that we really need to look
at.
Off the top of your head, do you have a round about number
of how many hours you put in a week to actually take care of
your son?
Ms. Schulz. That is a tough question because if we are in
the home environment, he may be sitting at his computer,
working on stuff, and I am not really having to do anything.
But say we are out somewhere, like if he would have come with
me up here, somebody needs to be right there by him all the
time because he can get lost and confused. But I would say
anywhere from 50 to 60 hours a week is realistic. And mind you
that Steven is not someone who needs hour-to-hour medical care.
His is just safety, supervision and redirection.
Mr. Runyan. Well, I think that raises the point where you
say, you know, they want to cap hours. You know, depending on
how active and how, whether they are out of the home, whether
they are physically able to be out of the home. You can have
the mental challenges with the TBI, the PTSD, that kind of
stuff but physically be able to interact in society, but you
need help with that.
So I think going more towards a stakeholder approach, and
having stories like yours is only going to help this process.
And I think the VA really needs to be open to that and take a
better approach on it. So I thank you for that.
And Madam Chair, I yield back.
Ms. Buerkle. Thank you again, Ms. Schulz.
Unless anyone else has any further questions of our
witness, thank you again for taking the time to come here today
and answer our questions and testify before us.
Ms. Schulz. Thank you so much.
Ms. Buerkle. Thank you.
And with that, I will ask Ms. Frese to begin her testimony.
I would ask at this time that our second panel join us at
the witness table. Also, with us this afternoon is Anna Frese,
the Director of the Family Support Program for the Wounded
Warrior Program (WWP); Ms. Cheryl Cox, the Caregiver Support
Coordinator for the Syracuse VA Medical Center; and Ms. Mary
Fullerton, the Caregiver Support Coordinator for the North
Florida/South Georgia VA Healthcare System. Thank you all very
much for joining us this afternoon.
STATEMENTS OF ANNA FRESE, DIRECTOR, WARRIOR SUPPORT PROGRAM,
WOUNDED WARRIOR PROJECT; CHERYL COX, LCSW, CAREGIVER SUPPORT
COORDINATOR, SYRACUSE DEPARTMENT OF VETERANS AFFAIRS MEDICAL
CENTER, U.S. DEPARTMENT OF VETERANS AFFAIRS; AND MARY
FULLERTON, LCSW, CAREGIVER SUPPORT COORDINATOR, NORTH FLORIDA/
SOUTH GEORGIA VETERANS HEALTHCARE SYSTEM, U.S. DEPARTMENT OF
VETERANS AFFAIRS
STATEMENT OF ANNA FRESE
Ms. Frese. Chairwoman Buerkle, Ranking Member Michaud and
Members of the Subcommittee, thank you for inviting Wounded
Warrior Project to testify today regarding the implementation
of the Caregiver Assistance Program. The program's success is
important to me, not only as WWP's Director of Family Support
and liaison to family caregivers, but also as a long time
advocate for my brother, Eric, whose injuries in Iraq led to
his need for round-the-clock care due to severe brain injury.
Let me thank this Committee for all it has done in shaping
the caregiver law and jumpstarting and accelerating a process
that now is directly helping members of families and insisting
on full implementation of the law.
Overall, I know VA has faced challenges in implementing
this new program and that many dedicated staff worked hard to
launch it. The process has gone relatively smoothly for numbers
of families. Some have encountered problems, and other are
waiting for applications to be processed.
But I am really most concerned about VA's implementing
regulation published on May 5 because it still fails to get
some issues right. As a result, some deserving families will
likely be denied help. Others will probably not get the
extensive help they should, and many others were discouraged
from even applying.
VA's rule is a big improvement over the initial
implementation plan. WWP has submitted extensive comments on
VA's rule. But let me highlight just a few of the problems,
many of which relate to warriors with TBI and mental health
conditions.
As currently written, eligibility criteria do not
adequately address the need for caregiving as it applies to
warriors with severe mental health conditions. Typically, where
such a condition is really severe, a family feels that that
they can't leave a warrior alone. But each case differs. But
often, the warrior lacks full cognition or judgment to be fully
aware of danger. In other cases, behavior may be marked by a
lack of impulse control or might otherwise leave a family
fearful of possible suicide risk or violence. In these kinds of
instances, a family member typically stays with the veteran for
much of the time to ensure the warrior's safety. Where those
behaviors are due to TBI, VA's eligibility rule seems workable.
But where the same safety risk is due to PTSD, depression
or anxiety, it seems much less likely that VA will provide
caregiver assistance under the new rules.
A second area of concern is how VA's eligibility criteria
are being applied around the country. WWP recently conducted a
survey to understand families' experiences under the new
program. Among the findings, the survey suggests there is a
wide variability from facility to facility as to who makes
eligibility determinations and how they are made.
Let me share an example. One caregiver has provided almost
constant care and supervision for her husband, who suffers from
PTSD and traumatic brain injury; 11 days after applying for
caregiver assistance, a VA nurse practitioner contacted her to
advise her that the application had been denied. Without either
reviewing the veteran's medical records or consulting his
longstanding care team, the nurse concluded on the basis of the
veteran's compensation and pension exam records that he did not
need assistance in performing activities of daily living and,
thus, wasn't eligible.
Among her many errors was to overlook the fact that
eligibility could solely be based on the need for supervision
or protection. Luckily, this situation ended favorably, but
only because a VA employee took--another VA employee--took the
initiative to intervene. The case illustrates the inherent
problem of the rule which is altogether vague as to how
clinical eligibility determinations should be made and who is
to make them.
This and other cases also raise the question, how can a
veteran or caregiver appeal an adverse medical or legal
decision? The implementing regulation is completely silent on
this issue. We believe it is essential that VA establish
systematic recourse for those caregivers who may be denied
benefits in error. But feedback from caregivers indicates they
are unaware of where to turn in the event that they disagree
with VA determination.
Since caregivers generally can no longer work outside of
the home and often care for loved ones on a full-time basis,
the stipend was to provide some financial support. Let me offer
an example to highlight what we see as flaws in the way the
rule works regarding the amount of the stipend. Take the case
of a veteran who sustained a severe TBI but, after a lengthy
rehabilitation, is able to perform all activities of daily
living. But the TBI manifests itself in severe mood swings,
sometimes aggressive violent outbursts. Because he can't
control these behaviors, even with medication, his wife must be
with him full time.
Applying VA's current rating skill, which measures need for
assistance on a scale of zero to four, this veteran might get a
score of four in three different areas, inability to self-
regulate, safety risk, and inability to plan or organize. But
because the veteran doesn't need assistance in any other areas,
he or she would get a total score of 12, which under the VA
rule means the veteran is deemed to need only 10 hours a week
of caregiver assistance. Yet, the veteran actually needs full-
time support.
In closing, we do commend the VA for the substantial
improvements they have made and for the speed in which they
launched the program. We also believe flaws in the interim rule
must be corrected to ensure that the programs fulfills the
intent of the Congress and promise of the law.
WWP looks forward to working with the VA and this Committee
on that shared goal. Thank you.
[The prepared statement of Ms. Frese appears on p. 33.]
Ms. Buerkle. Thank you very much, Ms. Frese.
Ms. Cox.
STATEMENT OF CHERYL COX, LCSW
Ms. Cox. Good afternoon, Chairwoman Buerkle and Members of
the Committee. Thank you for the invitation to discuss the
Caregiver Support Program, established in title 1 of Public Law
111-163, as implemented at the Syracuse VA Medical Center.
My name is Cheryl Cox, and I am the Caregiver Support
Coordinator at the Syracuse VA. I have been a clinical social
worker at the VA for 4 years and was the ambulatory care social
worker prior to becoming the caregiver support coordinator. I
received my Master of Social Work from the State University of
New York at Buffalo in 1993, and have over 18 years of
experience working in mental health and medical settings.
The care provided by family caregivers is essential in
allowing our veterans to maintain as much independence as
possible, remaining at home in their community, surrounded by
their loved ones. I am truly honored to be a part of the
groundbreaking Caregiver Support Program.
Throughout my career, I have been fortunate to work with
caregivers and am truly impressed with their tireless
dedication and the level of care they provide. To date, the
Syracuse VA Medical Center has received seven applications for
the Family Caregiver Program. I am working with these veterans
and their family caregivers as well as their medical team to
complete the application process. Our first caregivers who have
completed the caregiver training are expected to have their
home visits and complete the process within the next week or 2.
Throughout the initial implementation, I cannot say enough
about Syracuse's Operation Enduring Freedom/Operation Iraqi
Freedom (OEF/OIF) team and the support we have received from
leadership, both at the local and national levels. In advance
of accepting applications, our local OEF/OIF team identified
potential eligible veterans and caregivers. Our team worked
together to contact these veterans and caregivers to ensure
that they were receiving all possible benefits and services,
and to assist them with the application for this new program.
Throughout April, the National Caregivers Support Office
provided several key training sessions for the caregiver
support coordinators on the program and application process.
Since I began working at the VA, I have had the privilege
of meeting and working with caregivers of veterans from all
eras. In my role as an ambulatory care social worker, I have
assisted numerous caregivers with information on VA and
community programs and services, assisted with transitions to
varying levels of care, and provided other forms of support. I
am continually impressed with their dedication to their loved
ones, and I am honored to be able to provide support to them.
Through the Caregiver Support Program, I have had the
opportunity to do intensive case management with those applying
for the enhanced benefits. Again, these caregivers and the
sacrifices they make never cease to amaze me. One young wife of
a veteran comes to mind. This veteran suffered a gunshot wound
to the head by sniper fire while serving in Iraq. He continues
to have seizures, memory impairment and vision loss. Following
his initial hospitalization and treatment, he spent 6 months in
a traumatic brain injury center in Richmond, Virginia. His wife
shared how she did not leave his side the entire time, juggling
care for their two small children, who were 11 and 5 at that
time. She has remained by his side as his wife, advocate and
devoted caregiver. She has not been able to work outside the
home due to her commitment to her husband and providing the
care he needs. She has been very appreciative of the support
and recognition this program provides.
The Caregiver Support Line in Canandaigua has been
operational since February of this year. It is an important
part of this program, as it gives caregivers a place to turn
for information and support. I have received several referrals
from the support line to assist caregivers and families of
veterans from all eras with questions regarding VA services and
programs. In my role as the Caregiver Support coordinator, I
have been able to provide assistance in leading them to
appropriate VA and community resources while providing much
needed support.
Facilitywide, I have been actively providing education to
staff on the Caregiver Support Program and exploring ways in
which to reach out to as many caregivers as possible. Over the
next few months, Syracuse will establish a Caregiver Support
Advisory Board, and I will be implementing a support group for
caregivers. I look forward to providing ongoing support to
these unsung heroes.
Thank you again for the opportunity to discuss Syracuse's
implementation of the Caregiver Support Program.
Ms. Buerkle. Thank you very much.
Ms. Fullerton.
STATEMENT OF MARY FULLERTON, LCSW
Ms. Fullerton. Good afternoon, Chairwoman Buerkle, and
Members of the Committee. Thank you for inviting me here to
share how North Florida/South Georgia Veterans Health System
has been implementing the family Caregiver Support Program.
I have focused much of my career as a social worker working
with veterans and their family caregivers, and it has been a
wonderful opportunity to have been selected and serve as the
full-time Caregiver Support Coordinator.
VA Central Office has provided comprehensive training to
the caregiver support coordinators, the teams and the services
who are involved in this process.
Additionally, Veterans Integrated Services Network (VISN) 8
has regularly scheduled teleconferences where the caregiver
support coordinators are informed about the program
implementation, as well as offering a forum to ask questions.
Experts have been brought in to help the caregiver support
coordinators identify and better understand specific diagnoses,
such as post-traumatic stress disorder.
North Florida/South Georgia Veterans Health System
leadership is very supportive of the Caregiver Support Program.
I meet regularly with the patient aligned care teams to
streamline the implementation processes for this program by
discussing the role of the home-based primary care, traumatic
brain injury mental health concerns, among others. I also meet
regularly with our Medical Administration Services regarding
benefit criteria, and I am working with volunteer services to
identify additional ways we can support our veterans and their
caregivers.
Through July 1st of this year, North Florida/South Georgia
Veterans Health System has received 23 applications for the
primary family Caregiver Support Program. Nine of these
applications are in process; 14 did not meet the program
eligibility criteria. Of those that did not meet the
eligibility criteria, six were injured before 9/11; one is on
active duty without a date of discharge; five did not require
the continuous and approved caregiver support services; and two
experienced injuries that were not incurred or aggravated in
the line of duty.
My first application was with a veteran and his wife who
live in South Georgia. He and his wife have been married for a
number of years and have two wonderful children. This veteran
experienced four blast injuries and lost consciousness during
mortar blasts. As a result, he developed severe migraines and
seizures. He has constant headaches. And when the migraines are
severe, the pain is debilitating.
He also experiences post-traumatic stress disorder,
traumatic brain injury, visual impairment, tinnitus, loss of
taste and smell, and multiple other problems. His wife was
working full time as a teacher but has quit her job to take
care of her husband full time at home. She openly states that
what she does for her husband is inspired by the love that they
share. She accepts the loss of her career with no regrets about
her caregiving role. Currently their only income is from Social
Security Disability and his VA benefits. She and I have
discussed that no amount of money could purchase the type of
care that she personally provides for her husband. Their VA
OEF/OIF/Operation New Dawn case managers have been very active
in this veteran's care, identifying supportive services for the
whole family.
The wife has shared how thankful she is for the current
services being provided to the family. She has already
participated in the Easter Seals training and felt that it was
very beneficial. She is also very appreciative of the financial
support, which will be paid directly to her.
The application process for the Family Caregiver Program is
only a part of the Caregiver Support Coordinator's role. I
receive and respond to referrals from the VA Caregiver Support
Line, and as of June 30 of this year, I had received over 100
referrals. The majority of these referrals were Vietnam and
World War II veterans and their caregivers. I follow up with
these callers within 30 days and again at 60 days to see if I
can provide additional assistance and offer supportive
counseling and referrals for VA and community services.
I also am involved in community outreach and coordinate
care with agencies that provide additional services and support
to the veterans and their caregivers. In May, I coordinated the
eighth annual resource fair held at the VA. These were
community agencies as well as VA services.
Again, I appreciate the opportunity to talk with you today
and would like to thank you for your ongoing support to our
veterans and their families.
Ms. Buerkle. Thank you very much. At this time, I will
yield myself 5 minutes for questions.
Ms. Frese, I would like to start with you, if you would. If
you could change one thing with this program, where do you see
a deficiency or something that needs to be changed?
Ms. Frese. I think one of the issues is one that Debbie,
Ms. Schulz, mentioned previously in dealing with the
determination of the stipend and the range of hours. So I won't
be redundant on that, but I think that is something that
definitely attention needs to be brought to.
I think the second thing is the eligibility, the mental
health eligibility criteria. The IFR sets a much higher
standard for eligibility with the current Global Assessment of
Functioning (GAF) score in cases involving psychological trauma
or other mental health conditions than for any other condition.
And there seems to be a disparity in the needs for the mental
health compared to the different physical disabilities that
others may be having.
The amount of hours the family caregivers are providing, I
think, regardless of either the mental health condition or a
physical disability remain the same. There is the need there.
And I also hear from others that because seeing that GAF score
and the eligibility criteria, it has dissuaded many from
applying, just not understanding that they still may be
eligible. And it also can create a misunderstanding with some
of the professionals that they work with. The education with
that eligibility criteria would be greatly helpful for the
family members applying but also for some of the VA personnel
that come into contact with the families, where there is a need
and they would benefit from this program.
Ms. Buerkle. Thank you.
Ms. Cox, and Ms. Fullerton, what is the biggest complaint
that you hear from both the veterans and the caregivers
themselves? And, how would you suggest remedying them?
Ms. Cox. I can tell you, in Syracuse, one of the biggest
challenges has been the question about illness versus injury,
and right now in the interim rule, it is specific to an injury
that was incurred or aggravated on or after 9/11. And we do
have caregivers that are providing significant amounts of care
to veterans based on an illness that they may be service-
connected for, and under the regulation, they are not eligible,
so that is what I am hearing the most about.
Ms. Buerkle. Thank you. Ms. Fullerton.
Ms. Fullerton. Quite honestly, ours has been going fairly
well. I haven't heard any complaints. We focus on the veterans
and working with the caregivers trying to meet their needs. We
are lucky that we have open communication with all the team
members that we can discuss if there were any issues coming up.
I know that finances is probably the number one concern with
these families, and it is really rewarding to be able to get
them help that way.
Ms. Buerkle. Thank you.
This is maybe for Ms. Cox and Ms. Fullerton. If a veteran
is denied access to the program, is there an appeal process? Do
you know of anyone who has been denied and appealed and was
successful?
Ms. Cox. I can speak for Syracuse. We have had one that was
denied. I did send a letter to the veteran and the caregiver
explaining the appeals process and encouraged them to appeal if
they feel like that is in their best interest. To date, they
have not actually appealed the process.
But I can say that I have worked closely with that family
to let them know about the other services that they may be
eligible for. And at this point, they may not be eligible for
the stipend and some of the enhanced benefits, but we do have
other services, like home-based primary care and home health
aides that they could utilize.
Ms. Buerkle. Thank you.
Ms. Fullerton.
Ms. Fullerton. We have had a few denials. I have talked
with the caregivers and the veterans regarding what the denials
were based on. They understand that it is a team decision; that
we take into consideration their primary care, their OEF/OIF
case managers, any mental health providers that are involved in
that process. When I explain the criteria and the severity of
illness and the need for the essential caregiver, they
understand that. I do explain when they are denied that there
is an appeals process, and they are more than welcome to go
through that, and I would help to walk them through that.
Ms. Buerkle. Thank you very much.
At this time, I yield to the Ranking Member, Mr. Michaud.
Mr. Michaud. Thank you very much, Madam Chair.
When the caregiver is going through the process, do they
participate in the clinical assessment at the start of the
process?
Ms. Fullerton. Actually, my experience I have had one wife
that asked to be part of the clinical evaluation with her
primary care provider, and he welcomed that. You know, they
said, by all means, for them to be there. Most of the providers
actually know the wives and, I say wives--that is who are our
caregivers, the majority of them--know both of them. So they
have been very open to have them part of that.
Ms. Cox. And in Syracuse, we have used a team approach, so
most, actually all, of the veterans that have applied have been
closely case managed by our OEF OIF team. They know them very
well, so we have worked with them and their primary care
doctor, and then if they have other components, like mental
health, so we have done it really as a team to make sure that
we are being as inclusive as possible.
Mr. Michaud. But it is not required that you be inclusive?
Ms. Cox. It is not required, but once we receive the
initial application, the caregiver support coordinator is
expected to contact the caregiver to do an initial assessment
within 2 days. So when I do that, I do elicit from the
caregiver the kinds of things that they are assisting the
veterans with so that I can bring that back to the team and
assist with the clinical eligibility.
Mr. Michaud. Ms. Frese, have you found it, among the
individuals that you talked to, that it is a problem that the
caregiver is not part of the clinical assessment process?
Ms. Frese. I think it makes the most sense, as you heard
again from Ms. Schulz herself, that the majority of these
families, many of the families have been doing this for an
extended period of time and have a very established treatment
team, and so it seems to make most sense that with the receipt
of an application from that caregiver, that that treatment team
would be questioned or involved from the beginning and the
caregiver would be part of that.
The surveys that we had sent out and received back, it is
not--that is an inconsistency that we did receive back, that
the majority, there is not an active involvement in working
with a team and understanding where the decision process is
coming, how it has been made, who is involved and coming down
to the endpoint of determining the number of hours of where
that came from.
Mr. Michaud. Thank you.
Ms. Fullerton, you mentioned that you received a lot of
training from the VA for case workers. However, we heard Ms.
Schulz mention in her testimony that the case worker came there
and thought that she was the veteran, so evidently, they did
not read the case, so I have to question the training, or is it
just this one individual that did not do his or her work?
Ms. Fullerton. At North Florida/South Georgia, the home-
based primary care team is the one that is going to be doing
that initial assessment and the monitoring. They are very well
trained to work with the veterans and the caregivers in the
home. I have talked to them personally about every veteran that
is coming through the training system that would be coming up,
and they have been able to access the records, and we have
talked about what the needs are. And that is considered a very
supportive visit. They have a template that they would be
filling out to make sure the home is safe and that the veteran
and the caregiver understands the training that they have and
if they have any supports with that, but it is going to be a
person that is very familiar with coming into the home and will
know that veteran, if not face to face, will know their record.
We have had two veterans that actually are followed by home-
based primary care, so they are very familiar, which is nice.
Mr. Michaud. I guess I would be concerned hearing Ms.
Schulz' testimony when she did not have a very good home visit
and, in fact, that they didn't know who the veteran was. I
guess that is a little concerning about the training. Maybe it
is just this one individual.
My next question actually for Ms. Cox and Ms. Fullerton, as
the VA rolls out its peer support monitoring program over the
next year, whether it is veteran to veteran or caregiver to
caregiver, do you have any suggestions to how the program
should be implemented?
Ms. Cox. I guess I would have to think about that a little
bit. But I know that, you know, as social workers and as
caregiver supports programs, we are generally involved in
support groups, and so if we could assist with facilitating or
giving input into how those groups work and what works best
that might be helpful. And I would imagine we would have a
piece of assisting in the implementation.
Mr. Michaud. Thank you very much, Madam Chair.
Ms. Buerkle. Thank you.
I now yield 5 minutes to the gentleman from Michigan, Dr.
Benishek.
Mr. Benishek. Thank you, Madam Chairman.
Well, it seems that Ms. Cox and Ms. Fullerton have a little
different experience than Ms. Schulz related to us here. I
mean, it sounds as if you are relating to me a much better
evaluation than Ms. Schulz related to us.
Do you have an ongoing communication then, like, more often
than once a month, with the patients? I mean, I just think,
from the testimony, there is a lot of variability here in the
care. I just wanted to know, is there someone here that we
could find out more about that variability in care?
Ms. Cox. I believe Ms. Amdur will talk to the clinical
eligibility and the assessment.
But I can say, in Syracuse, we have had seven applications.
So it is on the--I don't want to say the lower end, but I
really have time to be in contact with the caregivers that are
applying for the program in Syracuse.
And I did hear Ms. Schulz's concerns about the home visit.
And I agree, it really shouldn't happen like that. But I think
we are working together with the teams and trying to do the
best that we can for the veterans and the caregivers to get
them the services they need.
We also have weekly calls across the Nation, national
calls, where we receive ongoing support and training. And, at
the local level, we have biweekly calls in our network. So we
are communicating with the other caregiver support
coordinators, trying to make sure that we are on the same page.
Mr. Benishek. Ms. Frese, do you have any support with a
caregiver support coordinator? I mean, have you worked with
people like Ms. Cox and Ms. Fullerton, in your experience?
Ms. Frese. I have not had direct contact with the caregiver
support coordinators. In my family's experience, my mother has
completed the application and has had contact with them. And in
visiting with the families, you know, I think----
Mr. Benishek. You are not very far along in the process, is
that what I am getting from you?
Ms. Frese. Our family is not, but I think, you know, in
hearing from Debbie as well, VA launched this program quickly.
And WWP has heard from caregivers that the--there have been
many positive actions with the caregiver support coordinators.
And that has maybe been one of the first positive contacts with
the VA at that beginning stage. They were informative in the
beginning with the 800-number. Maybe not----
Mr. Benishek. Well, yeah----
Ms. Frese [continuing]. The best prepared, but at least the
coordinators were informed.
But I think we are looking at--you know, the success of
this program depends on the framework that has been
established. And the framework has serious holes in it, such as
we addressed with the mental health eligibility and the
determination for the stipend.
Mr. Benishek. So, then, does every medical center end up
having a caregiver support coordinator then?
Ms. Cox. We do, yes.
Ms. Fullerton. We have an alternate, as well. So if we are
here, we have an alternate that has gone through the same
training and is involved in the phone calls, so they can kind
of step in and be us for a while.
Mr. Benishek. All right. Well, I understand this is all
still pretty new, but I think it is going to involve a little
continued monitoring, as far as I can see, to make sure that
the results that you two are seeing reflect what is going on
throughout the system. So I look forward to continuing
oversight of this process.
I will give back the rest of my time. Thank you.
Ms. Buerkle. Thank you, Dr. Benishek.
I now yield 5 minutes to gentleman from New Jersey, Mr.
Runyan.
Mr. Runyan. Thank you, Madam Chair.
And, ladies, thank you for your testimony.
Ms. Cox, you might have more of a background on this, but I
was curious: As we are trying to find the proper number of
hours to care to disability, is there anything in the private
sector, whether it is county statistics, maybe Alzheimer's
Association, are there organizations like that that have
formulas?
Ms. Cox. Not that I am aware of, to date. And I think that
this program is pretty groundbreaking. I don't know of other
community agencies that actually pay a stipend to caregivers to
provide that care. So I am not really aware of a specific
formula that would help identify the----
Mr. Runyan. But not so much to--not so tied to a dollar
amount, but just the needs of hours.
Ms. Cox. Uh-huh.
Mr. Runyan. Not aware of any?
Ms. Cox. Yeah, not that I am aware of.
Mr. Runyan. Because I know, dealing with that--I, frankly,
have had two family members have Alzheimer's disease and pass
from it--I know how difficult that can be. And I currently have
one with dementia that is going through the same deal and also
going through the process, which raises another question.
When you do have a brain injury early on, you may not need
medical treatment for it, but, obviously, as we move down the
road and we age, it is a precursor to early-onset dementia or
Alzheimer's, which is going to require things like this. I
think having the ability to--I don't know if the VA is going to
be able to pull out these numbers and be able to do that type
of stuff early on.
But I was just asking, with your background of--they were
out there, and obviously not. And I think that obviously one of
the questions we have, is: How do we get this, and how do, you
know, we make it across the board? Because there are exceptions
to every rule----
Ms. Cox. Right.
Mr. Runyan [continuing]. And everybody needs to be treated
fairly. I guess we don't.
And that is really all I had. I yield back the remainder of
my time.
Ms. Buerkle. Thank you, Mr. Runyan.
I now yield to the gentleman from Tennessee, Dr. Roe.
Mr. Roe. Thank you.
And thank you all for being here.
And, Ms. Schulz, I read your testimony here, and it is very
compelling. But back to what Congressman Runyan is saying,
there probably are some private-sector models if you look, for-
profit and non-for-profit health care organizations that are
caregivers. They don't provide a technician or a nurse or an
LPN, but they go and they wash clothes and help. So there are
probably some models out there. And I don't know that that
would be helpful, but I would look.
And, certainly, it is 24/7. I will give you just one brief
example of someone I know who was shot through the neck in
1968, and his wife was told that he would probably live 7
years. He is still alive. And he is alive because of his
caregiver. She was 19 years old with an 11-month-old child when
that happened. And she is still taking care of him today.
And I think, Ms. Frese, your point about including these
people--they are experts. When the professionals like me and
the medical system, told her that her husband would live 7
years and he has lived over 40, I think I would listen to those
folks. So I think that is a great point you make, that they
should be brought in and questioned about what they have been
doing. You obviously have been doing something right. So I
would definitely do that.
What are the biggest hurdles that you have found so far in
doing this? I know, as Dr. Benishek said, this is new
territory. So what is the biggest frustration hurdle you have
had so far?
Ms. Cox. So, just to reiterate, the biggest challenge for
me as a clinician, because I want to support these caregivers
and I want them to have what they need to continue to provide
this care, has been the illness versus injury and that it
excludes some caregivers that provide significant amounts of
physical care to our veterans.
Mr. Roe. Okay.
Ms. Fullerton. I have worked in geriatrics quite a long
time, and I have heard a number of things from the vets that
are not within this 9/11 era and that they are doing the same
type caregiving. And it is a little bit frustrating that this
program is not open to them. I have encouraged them that they
will hopefully be considered at some time.
I make sure that I refer them to as many as services as
there are. They are eligible for the respite program regardless
of what era they are, you know, for in-home respite. So, make
sure they have the supports they can. But to not be recognized
financially has been difficult.
Mr. Roe. I agree with you. I mean, this caregiver that I am
speaking of, she is a hero to me. I mean, she has saved the
taxpayers millions of dollars with the care. She gave up a
career. What is so frustrating for me for her is that, not only
is she not included in this bill, she also couldn't be in the
workforce and gather time with Social Security.
And you know that her husband's life expectancy--he is
about 69 years old now--is not going to be as long as hers will
be. And I don't know how we make that right, but we need to
make that right. That is something that, when I first heard
that situation, I thought, that is a wrong that needs to be
corrected. And I don't know how we do that.
But I agree with you, that is one that I have seen
personally. And there probably are many, many others. And that
is not taking care of a veteran who is a senior who has
diabetes and so forth. It had nothing to do with service-
connection through an injury that occurred in--whether it was
World War II, Korea, Vietnam, wherever, Desert Storm, it
doesn't matter. So I agree with you.
I thank you all for being here.
And I yield back the balance of my time.
Ms. Buerkle. Thank you very much.
Unless any of my colleagues have additional questions,
thank you all very much for your testimony here today. You are
now excused.
And, at this point, we will ask our third and final panel
to come to the witness table.
Representing the Department is Ms. Deborah Amdur, the Chief
Consultant for Care Management and Social Work for the Veterans
Health Administration. Accompanying Ms. Amdur is Mr. Keith A.
Welsh, the Director of the National Caregiver Support Program.
I welcome both of you today, and we look forward to hearing
your testimony.
Ms. Amdur, you may proceed.
STATEMENT OF DEBORAH AMDUR, LCSW, ACSW, CHIEF CONSULTANT, CARE
MANAGEMENT AND SOCIAL WORK SERVICE, VETERANS HEALTH
ADMINISTRATION, U.S. DEPARTMENT OF VETERANS AFFAIRS;
ACCOMPANIED BY KEITH A. WELSH, LCSW, DIRECTOR, NATIONAL
CAREGIVER SUPPORT PROGRAM, VETERANS HEALTH ADMINISTRATION, U.S.
DEPARTMENT OF VETERANS AFFAIRS
Ms. Amdur. Thank you.
Chairwoman Buerkle, Ranking Member Michaud, and
distinguished Members of the Committee, thank you for the
opportunity to discuss the progress VA has made in implementing
the provisions of title I of the Caregivers and Veterans
Omnibus Health Services Act of 2010.
I would like to acknowledge our family caregivers, Ms.
Frese and Ms. Schulz, who came to share their experiences
today, and acknowledge the veterans that they provide care for.
With me is Keith Welsh, our National Caregiver Program
Director.
When we appeared before you in March, you asked us if we
would be providing services and support to families by July. I
am happy to report that we are delivering the benefits and
services created under the Caregivers Act. We are providing
family members who have taken on the responsibility to be the
primary family caregiver with stipends, and we are training
hundreds of family caregivers to deliver the support our
veterans need.
Many VA staff members have worked very hard to get this
program up and running because we understand the key role that
family members fill in supporting a veteran's independence and
wellbeing.
Earlier this year, we heard your concerns and the concerns
of the veterans service organizations and revised our plans for
implementing the program in response. We made a special effort
to be explicit that eligible veterans with traumatic brain
injuries and significant mental health challenges would qualify
for these benefits. And we developed a broader set of
eligibility criteria consistent with the law that will allow
several thousand veterans to qualify. We estimate approximately
3,600 veterans and servicemembers will meet the criteria that
we have adopted in the interim final rule published on May 5th.
Today, we are processing more than 1,400 applications and
have over 300 primary family caregivers who have completed the
approval process, which includes comprehensive training and a
follow-up home visit. Once approved, we are providing them with
stipends and health care benefits if they are eligible,
retroactive to the date of their initial application.
VA has trained several hundred family caregivers already,
and we continue to train more every day. Training is available
in person at VA medical centers and community locations,
through self-study by book and DVD, and an online option will
be available starting next week.
In implementing this program, we have developed a hybrid
model that has centralized many of the administrative functions
while decentralizing clinical decision-making. This approach
ensures that our experts in the field are able to focus on
addressing the specific needs of each veteran while delivering
consistent health care and stipend benefits to designated and
eligible primary family caregivers. This approach allows us to
monitor the status of applications across the system. It will
also make it easier to identify any variations that occur in
delivery of the benefit.
We have provided comprehensive training to VA caregiver
support coordinators and clinicians who are responsible for
determining a veteran's eligibility for the program. However,
recognizing that this is a new benefit and effort, VA is
monitoring these decisions to ensure that we are consistent in
how we apply the program criteria.
We are continuing to reach out to eligible veterans and
encourage them to apply. We have contacted Post-9/11 veterans
currently receiving aid and attendance benefits from VA to
recommend that they submit an application for the Family
Caregiver Assistance Program. We appreciate the Committee's
efforts to help us spread the word about this program as well.
Looking forward, we will continue to review the public
comments we received concerning the interim final rule. The
window for submitting comments closed on July 5th, and our
final rule will either continue the program as implemented or
revise it based upon our considerations of these comments.
VA will also continue to provide the array of services
already available to eligible and enrolled veterans and their
caregivers, including such programs and services as home-based
primary care, our caregiver support line, home telehealth,
respite care, and our new caregiver Web site, which provides a
wealth of information and resources for caregivers, veterans,
families, and the public.
Evidence-based support programs and a peer-support
mentoring program are in development and will be rolled out
over the next 12 months to provide further assistance to our
family caregivers.
Although we have only recently initiated this program, we
have received a great deal of positive feedback from veterans
and their caregivers on the services that we are delivering and
the support that VA professionals in the field are providing.
We appreciate the Committee's support as we continue to work to
deliver the benefits that veterans and their caregivers have
earned.
Thank you for inviting me here today to share the progress
that we have made. I am prepared to answer your questions at
this time.
[The prepared statement of Ms. Amdur appears on p. 37.]
Ms. Buerkle. Thank you very much.
At this time, I will yield myself 5 minutes for questions.
You were here during Ms. Schulz's testimony. She talked to
us about just receiving the stipend payment with no explanation
of the benefit or the stipend. And I am interested to hear why
that isn't explained to the caregiver, how you don't
rationalize or justify what it is they are being paid and how
you are allocating that stipend?
Ms. Amdur. As our caregiver support coordinators indicated,
we did provide and continue to provide extensive training to
those in the field who are implementing the actual program and
benefits. And we have heard the concerns, and take them very
seriously, that we need to have more transparency in terms of
how decisions are made.
And so we are first reminding our caregiver support
coordinators that they need to make sure that they are sharing
very openly with the family caregivers and the veterans the
basis on which decisions are made. We are also in the process
of developing a letter, which will be included with the letter
that is currently sent that notifies the family caregiver and
veteran of their eligibility for the program. And that will
include an explanation of how the determination was made.
Ms. Buerkle. When will that be implemented so we can be
assured that all the caregiver assistants are receiving this
information?
Ms. Amdur. We are really working to implement that
immediately. We feel it is extremely important.
The other thing that I think is really essential here is
that we are sure that everybody is well-informed about the
appeals process and the fact that, you know, we are very open
to that. Certainly, we know our clinicians are very interested
in hearing if there are concerns about the eligibility
assessment process and are very supportive of individuals
appealing the decisions and reconsidering them.
I do want to let you know that we, as I said, have concerns
about inter-rater reliability: 152 medical centers; we want to
ensure that these criteria are being implemented across the
board in an appropriate manner. So we do have a quality
assessment measure under way. We have asked alternate
clinicians to review not just the eligibility assessment forms
that have been completed but also the medical records in order
to compare whether they would reach the same conclusion as the
team that has done the initial assessment.
I can share with you the results of our initial assessment
of 50 records. Eighty-four percent were consistent with the
eligibility and had no difference in the tier level.
Sixteen percent of them had a difference in the tier level
that was determined, but, actually, it was in the veteran's
favor. And this is what we expected. I mean, we know that our
clinicians want to do the best possible for all of these
veterans and their caregivers, so it wasn't surprising to us
that they may have ranked something higher than a second
review.
There were three that were scored lower. We have looked
into those cases. One of them we felt, you know, there were
serious concerns and have asked for a reconsideration of that
particular case.
Ms. Buerkle. Thank you.
In the instance where the veteran is denied and then they
appeal, I understand there is an appeals process. Is it the
same reviewing body that goes through the criteria? Or does it
go to a higher level, as it would in a court?
Ms. Amdur. It does. VA has a clinical appeals process that
has been in existence for a long time, and it is that process
that we are using. The case is reviewed by the chief of staff
at the medical center and clinicians that he or she will
determine should be involved in that. But they are not the
clinicians who made the original determination.
Ms. Buerkle. Thank you.
Ms. Amdur. If the family is still uncomfortable with that
decision, we then will bump it up to the VISN level and
eventually to Central Office, where we would convene a board to
re-review.
Ms. Buerkle. Thank you.
There are a lot of concerns that have been raised regarding
the fact that this stipend and this reimbursement to the
caregiver should be made retroactive because the VA failed to
enact this in a timely manner pursuant to the statute. And, I
just would like to have you speak to that issue.
Ms. Amdur. We have had that issue reviewed. It has been
discussed and under consideration. You know, my understanding
at this point was that the determination was that we would
backdate to the time of the initial applications.
But, certainly, we will, along with other things, look at
that as well, because it is one of the comments that we
received in the commentary on the IFR. We are taking those very
seriously. They are under review at this point, and we will
certainly respond to them in our response with the final rule.
Ms. Buerkle. I see my time has expired. Just one quick
question.
If you are talking about--is that a case-by-case, making it
retroactive? Or is that just--that would be something, you look
at all the comments and you make the decision that, no,
everyone should be reimbursed retroactively because it wasn't
their fault that this was delayed?
Ms. Amdur. I think we would absolutely make a decision like
that consistent across the board.
Ms. Buerkle. Thank you very much.
I yield now to the Ranking Member, Mr. Michaud.
Mr. Michaud. Thank you very much, Madam Chair.
In reading the Paralyzed Veterans of America's written
testimony, they question the commitment the VA has to this
particular program, citing lack of funding in 2012. Trying
figure out exactly what the money is, it is hard to figure out.
Can you tell us what the budget request is and how you arrived
at that number?
Ms. Amdur. Certainly.
In our 2012 budget, our projected need was for $158
million. It was based upon our calculations of the potential
number of individuals that would be eligible and the services
and benefits that would be provided to them, as well as
inclusion of services and benefits that would be provided under
the provision of the law for general caregivers.
We are looking on a regular basis in terms of our rate of
new applications that we are receiving. We will be in a better
position to make a firm determination once we get closer to the
end of this fiscal year. But we have been assured that we will
have that amount of funding and what is needed in order to be
in full implementation in 2012.
Mr. Michaud. And would you be able to provide the Committee
the number of requests that you receive for services when you
have the final number?
Ms. Amdur. Absolutely. I would also be very happy, sir, to
come on a regular basis and brief all of you, if that would be
helpful to the Committee.
Mr. Michaud. I asked the other panel--and there is no
policy, or it is not in the rules, but are family caregivers
able to participate in the in-person clinical assessment? It
appears that they have been, but, here again, this might not be
consistent throughout the VA system. Do you see a problem with
making that a part of the process?
Ms. Amdur. Not at all. I think that our clinicians do
recognize that the family caregivers have extremely valuable
information in terms of what the care needs of that individual
veteran are and that we really need to be getting their input.
As our caregiver support coordinators shared, I mean, many
of these families are very well known to our clinical teams.
They have been working with them for many years, in some cases.
And so I think that they really do know and understand and are
regularly communicating with the family caregivers.
But we will absolutely make sure that that message is sent
out loud and clear, that their input needs to be considered and
they need to participate in that evaluation process, yes.
Mr. Michaud. You had mentioned, as did the previous panel,
about the comprehensive training that VA employees receive.
What is really astonishing, though--and I heard Ms. Schulz's
testimony about her home visit; it wasn't what she thought it
would be. I mean, just one of the basic things I still can't
get over is where someone mistook her for the veteran. That
seems to be very basic. Evidently, he didn't even read what he
was supposed to, and so I would question the training, or is it
this just one employee that----
Ms. Amdur. I, too, found that extremely concerning, believe
me. As a clinician, you know, who has done home care, I know
the importance of certainly making sure you are well-read in
terms of the case and the individual that you are visiting and
know and understand as much as you can about the situation
before you go into that home.
And, you know, one of the things that we have relied on our
colleagues in the veterans service organizations is, when they
do hear about cases like this--and we greatly appreciate her
sharing this--it gives us an opportunity to go back to that
particular facility and really look at what their internal
systems are.
In general, I think that we certainly have received some
very positive input in terms of the home visits, descriptions
that they felt that the team that came in or the individual
that came in was a true ally to them, that they felt a great
sense of understanding; it was very validating to have somebody
in the home really recognize what their experiences have been.
So, you know, important, again, to go back to those
individual situations where the experience is not what it
should be and an opportunity to retrain and revisit how they
are implementing.
Mr. Michaud. Thank you very much. I think that is extremely
important, because I have also heard a lot of positive comments
from caregivers as far as the program. But you always are going
to get individuals out there who are not doing what they should
have been doing, and those are the ones that will tend to be
highlighted over and over again. So I am very glad to see that
you are taking it seriously in trying to solve the problem
before it gets worse.
Ms. Amdur. Absolutely. Thank you.
Mr. Michaud. Thank you.
I yield back, Madam Chair.
Ms. Buerkle. Thank you very much.
I now yield to the gentleman from New Jersey, Mr. Runyan.
Mr. Runyan. Thank you, Madam Chair.
And thank you for your testimony.
I just wanted to revisit, really, two questions. One
previously I think had been asked, but the other one dealing
with home inspections and it being an opportunity for a
caretaker, in the comfort of their own home, to really have a
lot of our stakeholder input in it.
Ms. Amdur. Yes.
Mr. Runyan. I don't know if it was you or one of the other
panelists mentioned a checklist. You know, that is all great,
but it is the interaction, the ability to take these ideas back
to the VA and really know the needs. Obviously, the VA has the
needs; that is the checklist. But we need to expand that.
Is there a process there to have that implemented?
Ms. Amdur. Oh, absolutely. And I think that the majority of
our folks who are out there doing these home visits are well-
seasoned clinicians who are, on a regular basis, in veterans'
homes and do understand the importance, that this is not a
policing activity; they are there to really sit down with that
veteran and family caregiver, talk about where they are, what
they need, are there other services that we need to bring in
that home, other equipment.
And, you know, again, I am alarmed at what was shared, but
we also have folks who are really sharing with us, on blogs and
emails and so forth, that they have found an experience that
was quite different, which is what we certainly would promote.
Mr. Runyan. Thank you.
And going back to the same question I asked Ms. Cox, about
finding, you know, everybody has their own needs, whether it is
hours or something else--in your testimony, you brought up your
partnership with Easter Seals. And are there statistics out
there from non-profits, you know, publicly available statistics
that say, this is how many hours a day we spend with a person
in this condition?
Ms. Amdur. Actually, the National Alliance for Caregiving
completed a study of caregivers of veterans, which was
published in January of this past year. And that has been
extremely helpful for us, because it did provide us with some
data, not just about caregivers in general, but about veteran
caregivers. I believe, in that study, the average amount of
time that a family caregiver was providing care, direct care,
was about 20, 21 hours a week, if I recall. But, you know,
there are studies out there, and we certainly are looking at
them and also getting input from our family caregivers.
One of the things, though, that is important to us is that
we don't want our family caregivers to feel that they have to
report hours to us. That is not what is intended here. There is
a process, an assignment of a stipend amount, the idea being
that they don't need to be reporting those hours on a regular
basis. That doesn't mean we don't want to take into account the
amount of hours that they are providing. But, again, you know,
this is something in recognition of the overall sacrifices that
they are making.
Mr. Runyan. Very well. And mostly because they are usually
on call 24 hours a day because they happen to be in the home,
which, frankly, saves us millions, billions of dollars a year.
Ms. Amdur. Without question.
Mr. Runyan. Thank you very much.
I yield back the balance of my time.
Ms. Buerkle. Thank you very much.
If there are no further questions, I move that Members have
5 legislative days to revise and extend their remarks and
include extraneous materials.
Without objection, so ordered.
Once again, on behalf of the Health Subcommittee, I would
like to thank all of you for being here today and for your
testimony.
We will continue to monitor the progress of the VA
regarding the Caregivers Assistance Program. As we have
consistently said, time is of the essence, because our men and
women deserve this. They deserve us to act responsibly and to
provide for the folks who are willing to give them care in
their home and maintain that high level of care that Dr. Roe
spoke of, we need to be there for them quickly--yesterday,
pretty much.
So we will continue to monitor this. We will have another
hearing probably within the next 3 months, and we will stay on
top of this so we can assure our veterans and the people who
need our services that they will get them.
Thank you all very much. This hearing is now adjourned.
Ms. Amdur. Thank you.
[Whereupon, at 5:29 p.m., the Subcommittee was adjourned.]
A P P E N D I X
----------
Prepared Statement of Hon. Ann Marie Buerkle, Chairwoman,
Subcommittee on Health
Good morning. The Subcommittee will come to order.
Four months ago today, this Subcommittee held our first hearing of
the year to discuss why the Department of Veterans Affairs (VA) had
failed to implement the caregiver assistance program as required by
Public Law 111-163.
At that hearing, it was clear to me that VA must go back and
address serious deficiencies with the Department's initial
implementation plan, particularly the strict eligibility requirements,
and get this important program up and running.
Today, we meet again to determine the progress the Department has
made in the intervening months to adjust its implementation plan and do
right by our veterans and their caregivers who have already given so
much.
In response to the concerns of Members, advocates and stakeholders,
VA changed its eligibility requirements and expedited the
implementation of caregiver benefits by publishing an Interim Final
Rule (IFR) on May 5, 2011. The IFR allowed the Department to accelerate
the Federal rulemaking process by immediately implementing the program
prior to the consideration of public comments and issuing a final rule.
As the daughter of a full-time caregiver, I understand the profound
impact injury can have not only on the injured, but also on his or her
loved ones.
Time is of the essence for these families--many of whom have
sacrificed their personal, professional, and financial security in
order to take on full-time caregiving responsibilities for their
veteran family member. We owe it to these men and women to get it right
and we will not rest until we do.
Today, we will hear from Debbie Schulz, a full-time caregiver for
her son Steven who was injured in Iraq in 2005. She will speak to her
experience applying for and obtaining services from the VA.
We will assess the actions VA has taken to date to meet the intent
of the law and the changes that need to be considered prior to issuing
the final rule.
Thank you all for being with us this morning. I am very much
looking forward to our discussion.
I now yield to the Ranking Member, Mr. Michaud, for any opening
statement he may have.
Prepared Statement of Hon. Michael H. Michaud, Ranking Democratic
Member, Subcommittee on Health
Thank you, Madam Chair.
I would like to thank you for holding today's hearing on Public Law
111-163, the Caregivers and Veterans Omnibus Health Services Act of
2010. Today's hearing follows up on a March 11, 2011, Subcommittee on
Health hearing on this very same issue where concerns were raised
regarding the delays in the rollout of the implementation plan, the
narrowing of criteria for eligibility of these benefits, and next
steps.
At the beginning of July, the Department of Veterans Affairs issued
its very first payments to family caregivers of veterans. These family
caregivers were the first to complete their caregiver training under
the program of Comprehensive Assistance for Family Caregivers, and VA
will send out more than $430,000 in stipend payments to nearly 200
recipients this month alone.
I am pleased that veterans and caregivers are finally beginning to
receive some of the services required by P.L. 111-163, and I am pleased
that the criteria for eligibility for these benefits have been expanded
to be more in line with the original intent of Congress. However, I
would like to hear more from our witnesses today about:
How the plan is being implemented in the field;
What issues remain;
What oversight is being conducted from Central Office;
and
How we can ensure that this program is successfully
implemented so that veterans and their caregivers receive these
critical benefits without further delay.
The testimony we received contained many concerns with the interim
final rule and I would like to hear more from VA on incorporating some
of these suggestions in the final rule.
Madam Chair, thank you again for holding this hearing, the second
in a series of hearings to assist in our oversight of the
implementation of P.L. 111-164. As we continue to monitor this issue,
we will work to actively engage VA as we move forward.
I yield back.
Prepared Statement of Debbie Schulz, Friendswood, TX
Chairman Buerkle, Ranking Member Michaud, and Members of the
Subcommittee,
Thank you for allowing me to share with you my experience with VA's
implementation of the comprehensive caregivers assistance program.
Thank you too for your leadership in pressing VA to implement this
important law so that congressional intent is fully realized. Much
progress has at last been made, though--based on my experience and what
I have heard from other caregivers whom I've met over the years since
my son's injury--I believe VA will need to go further.
As a caregiver for my son, Steven K. Schulz, USMC ret., I cannot
adequately express how important this program will be to his ongoing
recovery and continued well-being. If fully and properly implemented,
the law will assure that he will be able to stay in his home with age-
appropriate supports and his family will be able to continue to provide
the care that Steven needs on a daily basis. Because of Steven's severe
brain injury, incurred in 2005 while serving in Iraq, I have not
returned to my employment as a high school teacher. While this has
allowed Steven the benefits of being cared for at home rather than in a
long-term care facility, it has been a financial hardship to our
family, and has diminished my retirement benefits. The implementation
of the caregiver assistance program has brought both joys and concerns.
The joys are that the program is up and running, the application
process was easy and well advertised, and each VA has a point of
contact for caregivers. As one mom of a veteran 8 years post injury
said, ``Out of all the applications, assessments, programs we have been
involved with in the past 8 years, this was the easiest, least
stressful for us to date.'' I have several concerns, though. Given that
many caregivers have left the workforce, I'm particularly concerned
about VA's implementation of the stipend. VA's methodology to determine
the number of hours of caregiver assistance required for purposes of a
monthly stipend payment is very flawed. VA has also set an artificial
cap that limits a stipend to a maximum of 40 hours per week. This is
concerning for the many caregivers who provide nearly round-the-clock
care. I also see evidence of disparity between VA facilities and how
provisions for CHAMPVA services are administered. Like many other
caregivers, I've also been concerned about the limited access to
information on how clinical decisions regarding the program are made as
well as a dearth of information on how to appeal any determination
under the program--whether it is a question of basic eligibility or a
VA determination that a veteran only needs a very limited number of
hours of caregiving per week.
Life Before and After Injury
But first I want to share with you some background information
about my son and his injuries. My son, Steven K. Schulz, was injured
April 19, 2005 in Fallujah, Iraq, when an improvised explosive device
went off outside the Humvee in which he was riding. He was 20 years
old, unmarried, and my oldest son. The resulting traumatic brain injury
was severe and life-altering. We have been on a bumpy road of recovery
for the last 6-plus years. I say ``we,'' because it has been a family
effort to assure that Steven has gotten the supports and treatment he
needed. I hope that explaining the gravity of his injuries will
illustrate how critical the proper implementation of this important law
is, not just for Steven Schulz but for many, many other veterans and
their families whose lives have been turned upside down after
sustaining severe injuries.
Steven's brain injury has left him with many physical and cognitive
deficits. He has profound weakness on his left side, with no functional
use of his left arm. He walks slowly and with assistance of a service
dog, cane, or person. He cannot sustain walking longer than three
blocks, over lawns or uneven terrain, if multiple flights of stairs are
encountered, or in very busy environments. He is blind in his right eye
due to shrapnel, and his brain does not perceive the left field of
vision (hemionopsia). This leaves him with a very narrow visual field
and monovision. Steven uses a wheelchair for long distances and when he
is not wearing his adaptive equipment at home, but because of the
profound weakness of his left side, moving in a wheelchair is very slow
and inefficient, and assistance is required. Because of his vision
deficits, he is not a candidate for a motorized wheelchair.
Steven's thinking is slower, his thought process takes longer and
initiating and sustaining conversation or ideas is difficult. Due to
his frontal lobe damage, his impulse control, although much improved
since immediately after injury, often causes him to say aloud any
thoughts or ideas prior to filtering, even if the thought is mean,
insensitive, or vulgar. His affect is often very flat and without
expression, and he has difficulty interpreting social cues. His speech
is difficult to understand as he talks rapidly and does not enunciate
very well. Steven's attention span is very short. Although it has
improved over the years, he still cannot attend to a 30-minute
television show. Steven can read, but no longer enjoys it. He has some
memory problems. The ability to initiate activities was severely
altered. Because of this initiation problem, Steven has to be guided
through most all activities of daily life. Without the ability to
think, ``what do I do next,'' being left alone is very problematic.
Steven does not feel comfortable being left alone more than 30 minutes.
What about the future? Since very early in his rehabilitation,
Steven has told his therapist that he wants the normal things, ``a
wife, children, and to drive a car.'' He now accepts that he will
likely never drive a car because of his visual deficits, but he is
still looking for that wife. We have seen marked improvements from the
early injury, but we are realistic about the dream of returning to his
pre-injury self.
How has my life changed? Prior to his injury on April 19, 2005, I
worked as a special education teacher at Friendswood High School.
Before I started teaching, I had worked as a psychiatric social worker
for 9 years for the State of Texas. Both of these careers prepared me
for some of the realities of traumatic brain injury, but not the
realities of becoming a caregiver. My husband, 51 and I, 49, were
preparing to become ``empty nesters,'' were sprucing up our house, and
generally doing well when the blast occurred. TBI affects the whole
family for a very long time, most likely a lifetime. My daughter,
Elaine, was 18 years old, in her first year of college, and my youngest
son, Clay, was 15 years old, a sophomore in high school when that bomb
blasted. This type of injury changes a family. They went from typical
teens to mature beyond-their-years young adults. I became Steven's
primary caregiver, advocate, life skills coach, chauffer, secretary,
bookkeeper, teacher, drill instructor, medical assistant, physical/
occupational/speech therapist and his mom. That blast changed the
fabric of our family.
My Experience with the Caregiver Assistance Implementation
I applied for the Caregiver Program on May 9th, the first day it
was available. I was called by Steven's social worker at the Houston VA
and reminded that the program was accepting applications, and had seen
reminders on many social network sites, and in some veteran related
media. Getting the application online was easy and equally easy to
complete. I faxed the application to make sure it arrived promptly. As
I was filling out the application I knew that my health insurance was
being terminated, but I didn't have a firm date. When I asked the
social worker if I should indicate that I have insurance or instead
explain that it was being terminated. I was instructed that I could not
apply for CHAMPVA unless I was without insurance. The CHAMPVA document
I received clearly stated that you are not eligible for CHAMPVA if you
have access to insurance through COBRA. That alarmed me since I could
theoretically obtain COBRA coverage, but the astronomical cost would
make eating unaffordable.
Within several days of applying for the caregiver program, I
received a phone call saying the application had been received and the
next step was to complete a training program, and then a home visit.
The only training available to me at that time was a home-based
workbook, which was fine with me, because frankly, after care giving
for 6 years the thought of sitting for 2 days hearing things I had
already been taught was not appealing. The workbook was fine, but again
a redundancy and somewhat insulting to have to complete. I would
strongly suggest that future applicants be ``grandfathered'' as trained
if they have been caregivers for several years. Let me acknowledge,
though, that one of my fellow caregivers (7 years post-injury) went to
the classroom training and very much enjoyed meeting fellow caregivers.
On May 15, I received notice that my health insurance had been
terminated effective April 30, 2011. I notified the social worker and
she had me fax the termination letter to her and she forwarded it to
the application center. The disturbing implication here is that I was
led to believe that I was not eligible for CHAMPVA until I had a lapse
in coverage.
The most disturbing aspect of the whole process was the home visit.
The RN sent to assess our home did not even know who the veteran was.
When I introduced myself to the RN and told him Steven was not yet home
as he had gone out with his brother and would be back shortly, the RN
asked, ``Steven is your caregiver?'' The RN clearly had not read any
medical records pertaining to this home visit. Later in the interview,
he went on to lecture me about how I must take care of myself, but
offered no solutions aside from asking my family to ``relieve me of my
burden.'' The home assessment made sure we had smoke detectors, that I
knew about infection control, that I knew about nutrition and meal
preparation, and that I had been instructed in the proper care of a
catheter. Steven had not had a catheter since his earliest
hospitalization, and never as an outpatient. This kind of inept
assessing did not inspire confidence. My understanding was that the
home visit was to assess both veteran and caregiver for needs. That was
certainly not accomplished during that visit.
About a week later, I received verbal confirmation that I was
approved for the program with no other details available at that time.
This lack of detail was upsetting, because I had no way of knowing how
the determination had been made, if it was accurate, or if I had
recourse to appeal the decision if it was adverse in any way. I
certainly did not know who had made the decision. I was hopeful that
the evaluation and determinations had been made by Steven's treatment
team who has worked with him over the last 6 years, as they have a
fairly clear idea of his needs. July 1st I received my CHAMPVA card and
booklet. July 5th I received my first stipend check. As of this writing
I have not received written notice of how many hours were deemed
appropriate. Guessing by the stipend amount, Steven was in the upper
tier, but the fact that I have to guess, when others have been provided
that information, illustrates the lack of consistent information
provided from one VA medical center to another.
Concerns
When Steven first came home from the hospital, he needed 24/7 care.
Not because he was on a ventilator, had a feeding tube, or was unable
to move or speak, but because his thinking was so confused that he
forgot his leg was not working, or he could not figure out what to do.
He needed assistance to use the bathroom every 2 hours around the clock
for the first year. I share this with you because setting an artificial
cap of 40 hours per week assumes that the caregiver actually stops
providing needed care because 40 hours has been reached. Luckily for
us, we trained Steven's bladder and brain to ``sleep through the
night'' again. But that is just one example of why, the VA must address
that often times 40 hours is not enough for the veteran. For veterans
who do have ventilators, feeding tubes, or cannot move or speak, they
still must be attended to throughout the night. Their issues will not
learn to sleep through the night. For those caregivers, I ask that
their struggle be properly quantified by the VA and the caregiver
assistance program.
Social media has been a wonderful avenue for veterans and
caregivers to connect with others and alleviate their social isolation
and share information about benefits, programs, and ways to navigate
the systems of DoD/VA/TRICARE. Because of all this sharing, the
disparities between how programs are administered often become very
apparent. VA programs have been rife with regional disparities of how
services are delivered. I would like to say that this new program is
free of such disparities but that is not the case. Already, within our
VISN I can report one caregiver received a full documentation as to the
stipend she would receive; her secondary caregivers were interviewed
and given ID cards. I have not gotten such documentation and the
secondary caregiver I put on the application has not had any VA
notification at all. These are small items, but within a 200-mile
radius, vastly different experiences. The biggest disparities seem to
be in how veterans are rated to quantify how many hours will be
assigned to a caregiver. One example, a veteran with the same injury as
Steven, a severe TBI, but he made a better physical recovery, can walk
further with a cane, has better balance, can drive locally, but has
PTSD issues on top of TBI cognitive issues. He was allowed 10 hours of
caregiving a week. How can 2 hours a day Monday thru Friday be enough
time for this veteran? Never mind the weekend when oversight and care
is still needed. For veterans with ``safety and supervision needs'' 10
hours cannot be appropriate.
With finances an ongoing struggle, I'm of course very happy and
relieved to be receiving a stipend. It will make an enormous
difference. But I am concerned about other caregivers. The VA's
methodology for determining roughly how much care a veteran needs is
crude at best. In our case, it resulted in ``scoring'' Steven's needs
at a relatively high level. But, I believe, that this is because he
needs assistance with respect to both physical limitations as well as
cognitive and behavioral challenges. Since VA's scoring methodology
calls for aggregating each different impairment, his ``score'' would
generally be higher than for another veteran with TBI who is limited
``only'' in a few cognitive and behavioral domains. The fallacy in this
methodology is that a veteran with TBI whose extreme lack of judgment,
for example, makes him a safety-risk is not simply a safety-risk for 10
hours a week. Caregiver-friends of mine in this situation must be
almost constantly at the veteran's side. Yet the way in which the VA
regulation calls for determining the extent of needed-caregiving, for
purposes of determining the amount of the caregiver stipend, fails to
recognize that the potentially overwhelming nature of a traumatic brain
injury, for example, may require full-time caregiving whether or not it
manifests itself in many different kinds of limitation or impairment.
One dear friend, Cheryl Lynch, founder of American Veteran's with
Brain Injuries, and a mother of a veteran with TBI proposes a simple,
yet brilliant way of solving the issues of stipend calculations:
differentiate between ``some of the time,'' ``most of the time'' and
``all of the time.'' Apply these terms to the veteran, do they need
help/oversight some of the time, most of the time, or all of the time?
Develop a check list around the ADL's (activities of daily living) and
IADL's (independent activities of daily living), and answer the
question, ``does the veteran need assistance in this area some of the
time, most of the times, or all of the time.'' ``Some of the time''
would be someone who can get dressed and do many of his tasks on his
own, yet needs to have `someone' available for oversight and in case
things go wrong. ``Most of the time'' would be someone like Steven who
without oversight cannot function day to day. ``All of the time'' would
be someone who without the help of others cannot function hour to hour.
I also think that there is room to have spaces in between so the
veteran would be moved to the higher rating because of specifics, like
seizures, suicide risks, safety, etc. A rating like this would also
eliminate the artificial setting of an hourly rate. The need for
flexibility in ratings is crucial, because veterans with TBI, PTSD, or
mental health issues may have flare-ups in their conditions resulting
in decreased abilities. Right now there does not seem to be consistent
application as to why VA considers any particular veteran to need 10
vs. 25 vs. 40 hours of caregiving, and that is a BIG problem.
In closing, let me thank you on behalf of my family and other
caregivers across the country for your sincere efforts to make this
program a success. The problems I've highlighted can be solved. Doing
so will not only strengthen this important program, but improve the
well-being of our wounded warriors.
Thank you for the privilege of testifying. I would be happy to
answer any questions you might have.
Prepared Statement of Anna Frese, Director, Warrior Support Program,
Wounded Warrior Project
Chairman Buerkle, Ranking Member Michaud, and Members of the
Subcommittee,
Thank you for inviting Wounded Warrior Project to testify today
regarding the implementation of the caregiver assistance program. The
program's success is important to me not only as the Director of
Wounded Warrior Project's (WWP) Family Support Program and liaison to
our family caregivers, but also as a long time advocate for my brother
Eric whose injuries in Iraq led to his need for round-the-clock care
due to severe brain injury.
While caring for severely wounded warriors--sometimes for years and
without assistance--many caregivers have left their jobs, exhausted
savings, and suffered tremendous strain to their own health in order to
provide the very best care for their loved ones. The need to provide
caregivers access to mental health services, respite options, health
coverage and some modest financial support has been real and pressing.
Let me acknowledge the critically important role this Committee has
played--not only in shaping the caregiver law--but in jump-starting and
accelerating a process that in the last weeks began providing long-
awaited help to numbers of families. We are equally grateful for your
insistence that VA's plan complies fully with the law.
I was honored to appear before this Committee at a hearing in June
2009 on ``Meeting the Needs of Family Caregivers of Veterans'' and
explain how drastically our family's life was changed by my brother's
injuries and his total-care needs. My parents are one of the many
families who have hoped for years for the establishment of a caregiver-
support program. As the program has been implemented, however, they
experienced some real ambivalence.
My family's experience is telling. They did not apply immediately
as others had, but delayed because of concerns about one rigid aspect
of the VA program. VA requires home visits every 3 months to monitor
the veteran's well-being. In my family's case, however, a VA-provided
speech therapist works with Eric twice weekly in the home. With those
visits and Eric's seeing his VA primary care physician and three other
VA-provided physicians routinely every 2 to 3 months, VA is certainly
able to confirm his well-being. My family questioned the need under the
circumstances for additional home visits by new staff who don't know
Eric or the family. Ultimately, they did finally apply but the home-
visit issue frankly still rankles. Their application is still in
process.
Overall, I know VA faced challenges in implementing this new
program, and that many dedicated staff worked hard to launch it. The
process has gone relatively smoothly for numbers of families, while
some have encountered problems. I have worked with many others who are
still in limbo, waiting for applications to be processed and unsure of
what comes next.
But I'm really most concerned about VA's implementing regulation
(which governs the determination and delivery of benefits to
caregivers) because it still fails to get some issues right. As a
result, some families will likely be shut out; others will likely not
get the level of help the law requires. What is quite clear is that the
rules discouraged many from even applying.
Let me acknowledge that VA's implementing rule is a marked
improvement over its initial implementation plan. But unfortunately
that regulation needs a lot more work. Let me illustrate by discussing
several of our concerns with VA's eligibility criteria, inconsistency
in how eligibility is determined, and how the stipend is calculated.
Eligibility Criteria and Mental Health
As you know, traumatic brain injury and PTSD are the signature
wounds of this war. Many of the problems I hear about regarding VA's
implementation are from wives and moms of warriors with those invisible
wounds. Typically, because of the severity of one or both of those
conditions--these family members feel they can't leave their warrior
alone. Each case differs. But often, the warrior lacks full cognition
or judgment to be fully aware of danger. In other instances, a
warrior's behavior may be erratic, may be marked by lack of impulse-
control, or might even reflect a level of anxiety such that the
individual sleeps with a weapon under his pillow or otherwise leaves
family fearful of possible suicide-risk. In these kinds of instances, a
family member typically stays with the veteran for much of the time to
ensure the warrior's safety. Where those behaviors are due to traumatic
brain injury, VA's eligibility rule appears to cover such
circumstances. But in instances where that same safety risk or other
similar problem is due to PTSD, depression or anxiety, it seems much
less likely that VA will provide caregiver assistance under its new
rules.
In contrast, the law very clearly addresses circumstances involving
the veteran's safety or related vulnerability. It states that a need
for caregiver assistance can be based on a veteran's ``need for
supervision or protection.'' That criterion would address the full
range of situations I've described. But in the case of a veteran who
has PTSD, depression or anxiety, VA has unnecessarily established a
separate, much more restrictive rule. In the case of a veteran with
PTSD or other war-related mental health condition, VA's rule says the
veteran must be bedridden, delusional, or virtually suicidal to be
eligible for caregiver-assistance. And unlike a veteran with a physical
impairment, who may be eligible if only a few hours of help daily are
needed, a veteran with a mental health condition must require
``constant supervision.'' This kind of disparity is not only unfair, it
is inconsistent with the provisions of the caregiver law which draw no
distinction between TBI and PTSD, for example.
Clinical Determinations
A second area of concern is how VA's eligibility criteria are being
applied at medical centers around the country. WWP recently conducted a
survey to understand the experience of families who have applied for
assistance under the new caregiver program. Among the findings, the
survey responses suggest that there is variability from facility to
facility as to who determines a veteran's need for caregiver
assistance, as well as frequent failure to communicate to caregivers
how these eligibility determinations are made. Asked their
understanding of who determines a veteran's need for caregiver-
assistance, more than one in five caregivers expressed the
understanding that it was the primary care physician; one in four
responded that it was the clinical team; while more than four in ten
were unsure. Almost one in five respondents indicated that VA has not
explained the process or criteria they will use to determine the
veteran's need for caregiving assistance. Feedback from caregivers
going through the application process suggests that the breakdown in
communication is not only occurring between VA and veterans and their
caregivers, but also between VA Central Office and the field.
Let me share one example. For the past several years, a caregiver
has provided almost constant care and supervision for her husband who
suffers from PTSD, traumatic brain injury, and persistent short-term
memory stemming from injuries. The caregiver submitted an application
for caregiver assistance when it became available on May 9th and was
contacted for the first time by a nurse practitioner on May 20th and
advised that the application had been denied. The nurse, without either
reviewing the veteran's medical records or consulting the veteran's
longstanding care team, ``determined'' on the basis of the veteran's
compensation and pension examination records that he didn't need
assistance in performing activities of daily living--and thus
concluded, accordingly, that he was not eligible. Among the many errors
involved was to overlook the fact eligibility could be based solely on
a need for supervision or protection, and that these decisions are to
be made by an interdisciplinary team.
The veteran's occupational therapist was surprised by the decision
and lack of dialogue, and drove to the VAMC for an in-person meeting
with the nurse practitioner, after which the eligibility decision was
ultimately reversed. While this story ended favorably, it offers a
stark illustration of problems other families have encountered with
vague VA rules on clinical eligibility determinations. In this
instance, but for a very dedicated and well informed occupational
therapist and psychiatrist, this certainly could have ended
differently, with much greater distress and headache for the caregiver
and veteran.
Another survey respondent's experience highlights the risk of error
in what may be a too-brief clinical assessment. Let me quote:
``My husband was interviewed by his VA physician, but I was not
allowed to go in and assist him and help him remember things
and help give an accurate picture of his functioning and
health. His physician had only seen him a couple of times, we
were told this was the reason he was going in for an interview/
assessment. The assessment was supposed to provide the
understanding of my warrior's needs. Since I was not there, and
my warrior does not recall the entire interview, I do not know
if the doctor really got a good understanding of the
situation.''
Appeals
While the above-cited cases may be outliers, they do raise the
question, how can a veteran or caregiver appeal an adverse medical or
legal decision. The implementing regulation is completely silent on
this important issue. Yet it is essential that VA establish systematic
recourse for those caregivers and wounded warriors who may be unduly
denied benefits. Initial feedback WWP has received from caregivers
indicates that they are unaware of where to turn in the event that they
disagree with a VA determination. This is an issue VA must address as
more veterans and their caregivers apply for this benefit, particularly
given the potential for error.
Stipend Calculations
Another particularly problematic area relates to determining the
amount of a stipend VA will provide a family member designated as the
primary caregiver. Since many caregivers can no longer work outside the
home and often care for their loved ones on a full-time basis, the
stipend was to provide some modest level of financial assistance (tied
to the area wage rate of a home health aide).
The law directs VA to develop a methodology for calculating the
amount of a stipend which is to be based on the amount and degree of
personal care services the family member provides. But the scoring
methodology VA has developed is deeply flawed, particularly for those
whose need for caregiving is based on a need for supervision and
protection. In other words, the methodology does not provide a reliable
tool for gauging the caregiving needs of a veteran with traumatic brain
injury, PTSD, or depression.
Specifically, under VA's criteria, a veteran's need for caregiver
assistance is rated on a scale of 0-4 for each of seven criteria
associated with need for assistance with activities of daily living and
the need for supervision. With respect to each criterion (such as need
for assistance in performing a particular activity of daily living;
having difficulty with planning and organizing; or posing a safety
risk), VA clinicians are to assess the degree to which the veteran
needs assistance in that particular domain, from having no need for
assistance (scored as ``0'') to needing total assistance (scored as
``4''). The number of hours of caregiving-assistance a warrior needs is
determined based on how high they score on these measures.
A couple of illustrations may be helpful. Take the case of a
veteran who sustained a severe traumatic brain injury in an IED blast,
but after a lengthy rehabilitation is able to independently perform all
activities of daily living and has no serious cognitive deficits. In
this case, the lasting impact of his TBI manifests itself in severe
mood swings and sometimes aggressive and violent outbursts. Because he
is unable to control these behaviors, even with the assistance of
medication, he is unable to work and his wife accompanies him
everywhere. She helps him avoid the problems his behavior may cause,
get to his medical appointments and maintain some level of social
interaction.
In another case, a veteran has lost several buddies after multiple
tours to Iraq, and suffers now from severe chronic depression. While he
has no physical limitations, he is utterly without energy, has
difficulty even getting out of bed, cannot concentrate on tasks, and
experiences feelings of hopelessness. Medications have not alleviated
his symptoms, he is largely homebound, and his mother maintains
virtually full-time watch to be sure that he doesn't harm himself.
Applying VA's current rating scale, in both cases the veteran might
score a ``4'' based on total inability to self-regulate, perhaps
another ``4'' based on safety risk, and another ``4'' based on
inability to plan or organize. In each case, though, with no other
pertinent areas of needed assistance, the total score would be ``12.''
The VA rule, however, states that a veteran with an aggregate score
between 1 and 12 is presumed to need only 10 hours/week of caregiver
assistance. The rule makes no allowance for rebutting that presumption.
These examples are real; let me share the frustration expressed by
one of the respondents in our caregivers' survey as she explained that
the scoring system fails to take into account the gravity of her
husband's needs:
``I was told that my husband scored in the low Tier level I,
with an 11. This only allows 10 hours [of caregiving] a week,
approximately $426 a month. I don't agree with this because my
husband needs continuous supervision due to his TBI, PTSD,
mental health and also sometimes 2-3 days a week requires bed
rest due to physical pain. So 10 hours a week is like about
1.42 hours a day. I have to help him remember to take
medications 3 times daily, assist with cooking, driving,
medical appointments, just overall supervision for his safety.
10 hours a week is nowhere near the time I spend caring for
him.''
These scenarios clearly reflect how important it is that VA revises
the current stipend-calculation methodology. What is clear is that
requiring a high aggregate score across multiple criteria makes no
sense when a single deficit or impairment may dictate a need for total
care. Does it make any sense, for example, that a veteran who cannot be
left alone at all for safety reasons--and has no other limitations--
should be deemed to need only about an hour and a half of caregiving
help daily?
It is not unusual that a veteran who has sustained a severe
traumatic brain injury, for example, may regain lost function in many
domains, have no physical limitations, and may still need to have a
loved one close by on a more or less full-time basis because of a
single issue--whether it is erratic behavior, severely impaired
judgment, or safety. In the case of a veteran whose condition creates a
need for supervision or protection it makes little sense for VA to
assume that a need for full-time caregiving can only exist when the
veteran has multiple needs. This system reflects a fundamental
underestimation of both traumatic brain injury and mental health
conditions like PTSD.
The problems with the stipend actually go deeper. Even in
circumstances where a veteran is deemed to need total assistance, VA
sets a cap on the stipend amount--limiting any caregiver's stipend
based on the presumption that 40 hours a week of care would be
provided. VA's rule does not address the fact that our wounded
warriors' needs rarely conform to a 9-5 business day, and makes no
provision for those additional hours of likely needed caregiving.
We understand that the intent of this cap is that caregivers
shouldn't have to work unreasonably long hours, and that additional
care would be provided by others, such as home health aides. Yet the
rule is silent on this. Can caregivers count on it? Even if VA were
generally to provide such assistance, veterans and caregivers who
reside in rural areas are not likely to have access to such sources of
care. Given these realities, we have urged VA to revisit the issue and
lift the cap where needed so that the stipend amount more reasonably
reflects the hours of caregiving actually provided.
Program strengths and weaknesses
While WWP believes that VA must make changes to its final
regulation (and submitted extensive recommendations on July 5th in
response to VA's Federal Register notice regarding its VA's interim
final rule), we also recognize the progress VA has made over the past
several months in launching this multi-faceted program.
Many caregivers who responded to our survey commented favorably on
the ease of filing the initial application and the timeliness with
which VA had made contact with caregivers and veterans after the
initial submission. VA did make training accessible to caregivers by
providing the option of using a self-guided workbook. This tool offered
an easy approach to clearing a requirement. But the workbook was
simplistic, and for those seeking more specialized instruction it was
disappointing. It would be helpful in the future for VA to ascertain
early-on what individual training needs a caregiver-applicant has, and
tailor training to meet those needs.
Among those surveyed who had reached the stage of a VA home
assessment, many respondents commented that VA employees had been
professional, thorough, and appeared to be genuinely invested in the
health of both the veteran and the caregiver. One respondent
characterized the home visit as the most positive interaction she has
had with VA employees to date.
Yet despite these positive experiences, caregivers tended to have
greater frustration with what appears for many to have been regarding
the different steps involved in processing their application, who is
making decisions, how decisions will be made, and how erroneous
decisions can be reviewed and reversed. We commend VA for the
substantial improvements they have made since releasing the initial
implementation plan, but also urge the Department to carefully consider
the issues we have raised today as well as the much more detailed
comments WWP submitted to the Federal Register. VA must still correct
serious flaws in its interim regulation in order to ensure that this
program fulfills the intent of the Congress and the promise of the law.
In closing, WWP looks forward to working with VA and with this
Committee in bridging these gaps.
Prepared Statement of Deborah Amdur, LCSW, ACSW, Chief Consultant,
Care Management and Social Work Service
Veterans Health Administration, U.S. Department of Veterans Affairs
Chairwoman Buerkle, Ranking Member Michaud, and distinguished
Members of the Committee, thank you for the opportunity to discuss the
progress the Department of Veterans Affairs (VA) has made in
implementing the provisions of title I of Public Law 111-163, the
Caregivers and Veterans Omnibus Health Services Act of 2010 (the Act).
When we appeared before you in March, we provided an update on VA's
Implementation Plan for this program and our expected way ahead. We
heard the concerns you and the Veterans Service Organizations raised
about the eligibility criteria we were considering, and we worked to
revise the criteria to include a broader population of veterans.
We are pleased to report that the Family Caregiver program is fully
operational and that primary family caregivers have begun receiving
stipend payments for the support they are providing to veterans. On May
5, 2011, VA published an Interim Final Rule (IFR), which implemented
the Family Caregiver Program of the Caregivers and Veterans Omnibus
Health Services Act of 2010. The public comment period for the IFR
closed on July 5, 2011, and we are reviewing the comments we received
to determine if any changes to the IFR are necessary. Our final rule
will either continue the program as implemented in the IFR or revise it
based upon our consideration of the comments.
My testimony today will discuss the eligibility criteria VA is
using for this program under the IFR; the training and application
process, as well as an update on our progress in these areas to date;
and other benefits and programs VA is offering and will be offering to
caregivers of veterans.
Eligibility Criteria
Under the statutory and regulatory program now in effect, to be
eligible for benefits under the Family Caregiver program, Veterans must
have incurred or aggravated a serious injury (including traumatic brain
injury, psychological trauma, or other mental disorder) in the line of
duty on or after September 11, 2001. These veterans must also be in
need of personal care services because of an inability to perform one
or more activities of daily living (i.e., bathing, eating, dressing,
toileting), or require supervision or protection based on symptoms or
residuals of neurological impairment or injury. Servicemembers who are
undergoing medical discharge with an identified date of discharge are
also eligible for support under this program. Servicemembers and
veterans must require the assistance of a caregiver for a period of at
least 6 months to qualify. Veterans cannot receive simultaneous
personal care services from another party; for example, a veteran could
not receive home-health-aide services 24 hours a day, 7 days a week and
receive support through the Family Caregiver program. Veterans must
agree to receive care from a VA-designated primary care team so that
the VA can appropriately support these veterans and family caregivers.
After conducting a thorough analysis of VA's records and assessing the
current veteran population, VA estimates that approximately 3,600
veterans and servicemembers may be eligible for benefits under the
Family Caregiver program.
VA also included specific criteria in the IFR to ensure veterans
with a traumatic brain injury or neurological impairment would be
eligible to receive benefits. These criteria include a need of
supervision or assistance because of seizures, difficulty planning or
organizing information, deficits in sleep regulation, delusions or
hallucinations, memory deficits, or problems with mood regulation, such
as agitation or aggression.
Processing Applications and Training Caregivers
VA began accepting applications for the new Family Caregiver
program on May 9, 2011. During the first week, we assisted more than
625 veterans, servicemembers and family members in applying for new
benefits under the program. Through June 29, 2011, VA has 1,259
applications in process and had approved stipends for 182 veterans. As
of July 8, VA had processed 176 stipend payments totaling over $430,000
for primary family caregivers; this includes stipend payments for the
support these caregivers have provided since May 9, 2011. The tracking
device VA developed to monitor pending applications allows us to
pinpoint where any application is in the process and to identify
geographic or demographic trends. Based on the limited data available,
Family caregivers are overwhelmingly women (92 percent), spouses (67
percent), and between 26 and 64 years old (45 percent between 26-40,
and 43 percent between 41-64). The 10 facilities with the highest
number of applications in process are Fayetteville, NC; Dallas, TX;
Jackson, MS; Durham, NC; Puget Sound, WA; Augusta, GA; Orlando, FL;
Houston, TX; San Antonio, TX; and Washington, DC.
We have been working through the local Caregiver Support
Coordinators to reach out to eligible veterans and servicemembers in
the community to encourage them to apply. Post 9-11 veterans currently
receiving VA's Aid and Attendance benefit due to injury in the line of
duty have been contacted and encouraged to apply for the new caregiver
program. Veterans and family members must submit a joint application,
which can be accomplished in person, by mail, by phone (1-877-222-VETS
[8387]) or online (www.caregiver.va.gov). Additional support and
information is also available through the National Caregiver Support
Line (1-855-260-3274). Within three business days of having received an
initial application, the Caregiver Support Coordinator, at the
veteran's preferred VA medical center, will contact the veteran and the
primary family caregiver to assist with completing the application
process and schedule required training. This training is necessary
before any additional benefits can be provided to the primary family
caregiver. VA has partnered with Easter Seals to provide comprehensive
Caregiver Training to family caregivers of eligible post-9/11 veterans
as authorized by the law. Easter Seals brings more than 90 years of
experience in helping people with disabilities and special needs, and
we are very pleased to partner with such a renowned organization.
Training may be completed in any of three ways: by attending a
family caregiver training session conducted at a local VA medical
center or community location; by self-study using a workbook and DVD
that is mailed to the family caregiver(s); or by completing the
training online; the online training will be available by July 15,
2011.
More than 450 family caregivers have completed their training since
the beginning of June, and we continue to train more caregivers every
day so they can better support their loved one and begin receiving the
benefits included in the law.
Once the family caregiver training is complete, a VA clinician will
visit the veteran's home. This visit is designed to ensure that the
primary family caregiver and veteran have everything they need to be
successful in the home setting. Our clinicians are trained to do this
in a supportive and encouraging manner. One family caregiver described
this home visit as follows: ``All in all, the home visit was as
painless as the rest of the process, and in fact it was comforting to
have someone in my home to see what else I could do to help my husband
. . . ''
Once the home visit is complete, the primary family caregiver will
begin receiving a monthly stipend based on the veteran's level of need.
The primary family caregiver may also be eligible for health insurance
through the Civilian Health and Medical Program of the Department of
Veterans Affairs (CHAMPVA), provided that the primary family caregiver
is not already entitled to care or services under a health plan
contract. VA is making the stipend and health insurance benefits
retroactive to the date of initial application. Our expectation is that
the entire process, from initial application to the delivery of
benefits, will be complete within 30 days.
We will continue to conduct well-being visits every 90 days or as
clinically indicated. These visits, like the initial home visit, will
be performed in a supportive manner. The visits are designed to
evaluate the veteran's and the primary family caregiver's physical and
emotional state. VA clinicians conducting these visits may make
recommendations for additional training, support, equipment or other
services in the best interest of the veteran.
Other Benefits and Programs
In addition to the benefits specific to the primary family
caregiver of veterans (the stipend, health care coverage through
CHAMPVA, mental health services, and at least 30 days of respite care),
VA offers a number of benefits and services to all caregivers of
veterans. VA's National Caregiver Support Line, mentioned briefly
above, has responded to more than 9,000 calls from veterans and family
members since it was activated in February 2011. This Support Line,
staffed by clinical social workers, provides immediate and highly
responsive access to information for caregivers, and can help
coordinate local support through the Caregiver Support Coordinator at
each VA medical center. These Coordinators are able to offer additional
assistance by connecting veterans and family members with both VA and
non-VA resources. Since April 1, 2011, every VA medical center has had
a full time dedicated Caregiver Support Coordinator in place.
VA's home-based care programs are well-established and have been
supporting veterans in the community for many years. Home-based primary
care is a unique program that provides comprehensive long-term primary
care through an interdisciplinary team that visits the homes of
veterans with complex, chronic disabling diseases or injuries for which
routine clinic-based care is ineffective. Another recent initiative is
the Veteran-Directed Home and Community-Based Care program, which
provides veterans of all eras the opportunity to receive services in a
veteran-centered manner that allows them to avoid institutional
placement while continuing to live in their homes and communities. VA
operates this program in collaboration with the Administration on Aging
under the Department of Health and Human Services.
Veterans and their caregivers who are in need of close monitoring
of vital signs or frequent communication with a health care team can
benefit from home telehealth services. Telehealth offers the
possibility of treating chronic conditions cost effectively while
contributing to patient satisfaction.
General education and training are also available to all
caregivers. VA routinely offers in-person educational support for
caregivers of veterans undergoing discharge from an inpatient stay at a
VA facility and teaches techniques, strategies, and skills for caring
for a disabled veteran. We offer instruction and specialized training
in several specialty areas, such as traumatic brain injury, spinal cord
injuries or disorders, and blind rehabilitation. The Caregiver Support
Program has provided multiple national education and training to VA
staff throughout the country and to a wide range of Federal, State and
local organizations.
Our respite care programs are available to any caregiver of a
veteran. All veterans are eligible for 30 days of respite care per
year, and this respite care can be provided at home or in an
institution. Respite care provides the caregivers of veterans with a
needed break to relieve the demands of caring for a chronically ill,
injured, or disabled family member, and to prevent caregiver burnout.
In fiscal year 2010, more than 12,000 veterans and caregivers received
respite care through VA. More than 7,500 of these veterans received
respite care in home, and more than 4,700 received care in a nursing
home at VA expense. Adult Day Health Care Centers also provide respite
care in a safe environment with constant supervision.
VA launched a new Web site on May 31, 2011, www.caregiver.va.gov,
which provides a wealth of information and resources for veterans,
families and the general public. The Web site has had over 63,000 hits,
totaling over 400,000 pages viewed since its launch. This site provides
information on local and national resources, common veteran conditions,
caregiver self-care, and other topics identified as important by
caregivers.
Evidence-based support programs and a peer-support mentoring
program are in development and will be rolled out over the next 12
months to provide further assistance to the family caregivers of
veterans.
Conclusion
Although we have only recently initiated this program, we have
received a great deal of positive feedback from veterans and their
caregivers on the services we are delivering and the support VA
professionals in the field are providing. For example, one caregiver
described the application and evaluation part of the program by saying,
``The process has been incredibly painless and very quick, which has
been a huge breath of fresh air . . . .'' We know there is room for
continued improvement, and we appreciate the opportunity to hear from
you and the other witnesses at today's hearing to determine how we can
make this program even better. Thank you for inviting me here to
testify today to do that. I am prepared to answer your questions at
this time.
Prepared Statement of Adrian Atizado, Assistant National Legislative
Director, Disabled American Veterans
Madame Chairwoman and Members of the Subcommittee:
On behalf of the more than 1.2 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
on the Department of Veterans Affairs (VA) proposed interim final rule
(IFR) to implement title I of the Caregivers and Veterans Omnibus
Health Services Act of 2010, Public Law (P.L.) 111-163.
As you may be aware, DAV submitted comments to the IFR and it is
with sincere appreciation that we have this opportunity to share our
comments, concerns, and recommendations. We believe VA's effort in
proposing rules to implement a national caregiver support program is
commendable. Nonetheless, we believe the program as proposed will fall
short of its Congressional mandate without a number of significant
changes.
Based on VA's advances in medicine, health technology, expansion of
home care and the Department's push to provide the highest quality of
care to veterans in the least restrictive setting to achieve
rehabilitation, recovery, and community reintegration, today's VA
health care and the delivery of such care have shifted the burden,
cost, and responsibility for some levels and types of care onto sick
and disabled veterans, their families and other loved ones.
Without proper training and support, family caregivers and veterans
receiving care from family caregivers can incur greater emotional,
physical, and financial strain. Families have been brought to the verge
of bankruptcy and ruin. Such adverse impacts would affect the quality
of care and quality of life of caregivers and care recipients, as well
as other family members and loved ones. We believe a strong and
flexible VA family caregiver program can provide caregivers the support
they need and allow veterans to remain in their own homes--a much
healthier outcome for the victims of war, their families, and for VA as
well.
We urge this Subcommittee to continue its strong oversight of this
critical program and to ensure VA meets two required reports to be
submitted to the House and Senate Veterans' Affairs Committees not
later than 2 years after the effective date (January 30, 2013) on a
comprehensive annual evaluation on implementation and on the
feasibility and advisability of expanding caregiver assistance under
title 38, United States Code (U.S.C.), Sec. 1720G(a) to caregivers of
veterans seriously injured in the line of duty prior to September 11,
2001. In addition, we urge Congress to provide sufficient program
funding to help make this program a success.
Effective date of benefits provided under 38 U.S.C. Sec. 1720G
We note that public comments have been submitted to VA on the issue
of effective date for benefits provided under 38 U.S.C. Sec. 1720G. We
believe Section 101(a)(3) of P.L. 111-163 is pertinent and provides
that the amendments made by this subsection shall take effect on the
date that is 270 days after the date of the enactment of this Act
(January 30, 2011).
VA proposes the effective date of its rule is May 5, 2011. (76 Fed.
Reg. at 26148). The Department provides further clarification under 38
Sec. CFR 17.40(d), ``[C]aregiver benefits are effective as of the date
that the signed joint application is received by VA or the date on
which the eligible veteran begins receiving care at home, whichever is
later. However, benefits will not be provided until the individual is
designated as a family caregiver.'' Additionally, ``[T]he stipend . . .
due prior to such designation, based on the date of application, will
be paid retroactive to the date that the joint application is received
by VA or the date on which the eligible veteran begins receiving care
at home, whichever is later.''
In statutory interpretation, if ``the plain meaning of a statute is
discernable, that `plain meaning must be given effect.' '' Johnson v.
Brown, 9 Vet.App. 369, 371 (1996) (quoting Tallman v. Brown, 7 Vet.App.
453, 460 (1995)); see also Brown v. Gardner, 513 U.S. 115, 119 (1994).
``Determining a statute's plain meaning requires examining the specific
language at issue and the overall structure of the statute.'' Gardner
v. Derwinski, 1 Vet.App. 584, 586 (1991) (citing Bethesda Hosp. Ass'n
v. Bowen, 485 U.S. 399, 403-05 (1988)), aff'd sub nom. Gardner v.
Brown, 5 F.3d 1456 (Fed.Cir. 1993), aff'd, 513 U.S. 115 (1994). Because
the plain reading of the P.L. 111-163 is unambiguous, we believe the
effective date of benefits provided under 38 U.S.C. Sec. 1720G should
be January 30, 2011.
Eligibility requirements for the family caregiver program
VA proposes a veteran or servicemember be eligible for benefits and
services provided under 38 U.S.C. Sec. 1720G(a) if the individual meets
requirements under 38 U.S.C. Sec. 1720G(a)(2)(A) and (B), and all three
elements under (C). However, the law clearly defines an eligible
individual as one that meets requirements under 38 U.S.C.
Sec. 1720G(a)(2)(A) and (B), and only one of the three elements under
(C).
Under 38 U.S.C. Sec. 1720G(a)(2), to be eligible for a program of
comprehensive assistance for their family caregivers, an individual
must: (A) Be a veteran or member of the Armed Forces undergoing medical
discharge from the Armed Forces, and; (B) have a serious injury
(including traumatic brain injury, psychological trauma, or other
mental disorder) incurred or aggravated in the line of duty in the
active military, naval, or air service on or after September 11, 2001.
In addition, the individual must be in need of personal care services
because of one of the following: (i) An inability to perform one or
more activities of daily living; (ii) A need for supervision or
protection based on symptoms or residuals of neurological or other
impairment or injury; or (iii) Such other matters as the Secretary
considers appropriate.
VA on the other hand, proposes to define an eligible veteran for
the family caregiver program under 38 U.S.C. Sec. 1720G(a)(1), to mean
a veteran or servicemember who is determined to be eligible for a
Primary and Secondary family caregiver. VA provides further
clarification that to be eligible for a Primary and Secondary family
caregiver under this rule, VA proposes the veteran or servicemember
meet all requirements under 38 CFR Sec. 71.20 (a) through (g).
DAV disagrees strongly with this proposal. In requiring a veteran
or servicemember to meet all of the conditions under 38 CFR Sec. 71.20,
VA's proposal goes beyond the plain reading of the law and imposes a
more restrictive criteria that will result in fewer veterans in urgent
need being deemed eligible for the benefits of the law. This proposed
stricture will serve to deny benefits to deserving veterans.
We strongly recommend VA revise its proposed definition of an
``eligible veteran'' for the purposes of this benefit, and accordingly
to revise its proposed eligibility criteria.
In addition, we voiced our concern that VA's interpretation of the
proposed definition in individual cases may mean a veteran with a
serious illness other than those specifically listed may be excluded
from eligibility for family caregiver benefits, even if he or she meets
all other requirements as proposed in the IFR. Such an outcome would be
inequitable and not in keeping with the intent of Congress in enacting
this benefit for those who nearly gave the ultimate sacrifice in combat
deployments, training accidents and in contracting serious diseases in
the line of duty or while performing military duty.
Veterans and servicemembers this program was intended to benefit
have been and continue to be described as those who are, ``wounded,
ill, and injured.'' From the recently established programs within the
Department of Defense (DoD), such as the Recovery Coordination Program
(RCP), established by Section 1611 of the fiscal year 2008 National
Defense Authorization Act, to the VA Federal Recovery Coordination
Program (FRCP), wounded, ill or injured servicemembers, and their
families have been the target population to provide comprehensive
assistance.
We also believe Congress intended this program for those veterans
and servicemembers who are ``seriously ill.'' The Joint Explanatory
Statement of P.L. 111-163 states, ``[T]he Compromise Agreement also
includes an authorization for appropriations that is below the estimate
furnished by the Congressional Budget Office. The lower authorization
level is based on information contained in a publication (Economic
Impact on Caregivers of the Seriously Wounded, Ill, and Injured, April
2009) of the Center for Naval Analyses (CNA).'' This report was written
``[t]o estimate the economic impact on caregivers of the seriously
wounded, ill, and injured (WII),'' at the request of the Principal
Deputy Assistant Secretary of the Air Force for Manpower and Reserve
Affairs who was tasked by the Joint DoD/VA Wounded, Ill, and Injured
Senior Oversight Committee.
Subsequent to the passing of P.L. 111-163, VA's press release dated
February 9, 2011, (New and Enhanced VA Benefits Provided to Caregivers
of Veterans), which quotes Secretary of Veterans Affairs Eric K.
Shinseki declaring, ``[c]aregivers make tremendous sacrifices every day
to help veterans of all eras who served this Nation . . . They are
critical partners with VA in the recovery and comfort of ill and
injured veterans, and they deserve our continued training, support and
gratitude.'' (Emphasis added.)
Furthermore, VA's June 4, 2009, testimony before the House
Veterans' Affairs Subcommittee on Health, discussing the Department's
programs and support of family caregivers states, ``[c]aregivers
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.''
Accordingly, we recommend VA adding the term ``seriously ill'' as
considered under 38 U.S.C. Sec. 1720G(a)(2)(B) and accordingly to
revise its proposed eligibility criteria.
Definition of ``in the best interest'' of the veteran or servicemember
In citing 38 U.S.C. Sec. 7120G(a)(1)(B), (``[T]he Secretary shall
only provide support under the program required by subparagraph (A) to
a family caregiver of an eligible veteran if the Secretary determines
it is in the best interest of the eligible veteran to do so.''), VA
proposes the following:
[I]n the best interest means, for the purpose of determining
whether it is in the best interest of the eligible veteran to
participate in the Family Caregiver program under 38 U.S.C.
1720G(a), a clinical determination that participation in such
program is likely to be beneficial to the eligible veteran.
Such determination will include consideration, by a clinician,
of whether participation in the program significantly enhances
the eligible veteran's ability to live safely in a home
setting, supports the eligible veteran's potential progress in
rehabilitation, if such potential exists, and creates an
environment that supports the health and well-being of the
eligible veteran.
38 CFR Sec. 71.15. We read this proposal to mean the ``in the best
interest'' test includes that the following criteria must be met: (1)
Participation in the program significantly enhances the eligible
veteran's ability to live safely in a home setting; (2) Participation
in the program supports the eligible veteran's potential progress in
rehabilitation, if such potential exists; and (3) Participation in the
program creates an environment that supports the health and well-being
of the eligible veteran.'' (Emphasis added.) (38 CFR Sec. 71.15)
DAV takes no issue with the proposed criteria 2 and 3. However, we
take issue with the proposed criteria. 1. First, the ``significantly
enhances'' criterion is ill-defined. The discussion on this criterion
in the IFR and the proposed regulation does not provide for, or define,
a measurement system or scale to express the degree to which the
``significantly enhances'' standard is or is not met.
Second, the goal of this program is, ``[t]o ensure the veteran is
able to live in a residential setting without unnecessary deterioration
of his or her disability, and safe from potential abuse or neglect.''
76 Fed. Reg. at 26148. (See also the Joint Explanatory Statement of
P.L. 111-163, ``[T]he overall caregiver support program for caregivers
of eligible [Operation Enduring Freedom] or [Operation Iraqi Freedom]
veterans would authorize VA to provide training and supportive services
to family members and certain others who wish to care for a disabled
veteran in the home and to allow veterans to receive the most
appropriate level of care.'')
We believe criteria 2 and 3 subscribe to the aforementioned goal as
described in the IFR based on certain terms such as ``[s]upports the
eligible veteran's potential progress . . . if such potential exists,''
and ``creates an environment that supports . . .''
However, we believe criterion 1 proposes an unreasonable standard
beyond the goal of the program. For example, comparing criterion 1,
``[p]articipation in the program significantly enhances the eligible
veteran's ability to live safely in a home setting,'' to the program's
goal ``[t]o ensure that the situation [occurs in which a] veteran is
able to live in a residential setting without unnecessary deterioration
of his or her disability, and safe from potential abuse or neglect.''
Criterion 1 is clearly a higher standard.
In addition, when determining whether benefits and services from
VA's medical benefits package will be provided to an eligible veteran,
38 CFR Sec. 17.38(b) states:
``[C]are referred to in the `medical benefits package' will be
provided to individuals only if it is determined by appropriate
health care professionals that the care is needed to promote,
preserve, or restore the health of the individual and is in
accord with generally accepted standards of medical practice.
(1) Promote health. Care is deemed to promote health if the care
will enhance the quality of life or daily functional level of the
veteran, identify a predisposition for development of a condition or
early onset of disease which can be partly or totally ameliorated by
monitoring or early diagnosis and treatment, and prevent future
disease.
(2) Preserve health. Care is deemed to preserve health if the care
will maintain the current quality of life or daily functional level of
the veteran, prevent the progression of disease, cure disease, or
extend life span.
(3) Restoring health. Care is deemed to restore health if the care
will restore the quality of life or daily functional level that has
been lost due to illness or injury.''
We note VA does not impose any form of the ``significantly
enhances'' criterion to provide care, yet it is a requisite
consideration veterans and their family caregivers must meet in order
to participate in these benefits. DAV believes this imposes an
unnecessarily high standard and undue burden on the veteran,
servicemember, and family caregivers of these individuals.
We recommend VA revise its proposed regulation to include a
measurement system or scale to express the degree to which the
``significantly enhances'' standard is or is not met, or else remove
the pertinent phrase entirely.
``In the best interest'' as a requirement for eligibility of a veteran
or servicemember
As previously mentioned, VA proposes that to be eligible for
benefits under 38 U.S.C. Sec. 1720G(a), a veteran or servicemember must
meet all requirements under 38 CFR Sec. 71.20, including subsection
(d). (``[A] clinical determination has been made that it is in the best
interest of the individual to participate in the program'') (Emphasis
added). VA further clarifies and designates the ``in the best
interest'' determination as a medical determination in citing 38 U.S.C.
1720G(a)(1)(B). (76 Fed. Reg. at 26149). (``[V]A concludes that
determinations of `in the best interest' must be clinical
determinations.'').
DAV is concerned with VA's proposed use of the ``in the best
interest'' determination as an eligibility requirement and its
designation as a clinical determination.
According to the language of the law, we believe the ``in the best
interest'' determination is to be performed on an eligible veteran.
(``[I]f the Secretary determines it is in the best interest of the
eligible veteran. . .'') (Emphasis added). Furthermore, the purpose of
using the ``in the best interest'' determination is to satisfy a
condition that would require VA to provide support under 38 U.S.C.
Sec. 1720G(a) to a family caregiver of a veteran or servicemember, and
not for the purposes of determining eligibility of the veteran himself
or herself for the benefit.
Regarding the designation of ``in the best interest''
determinations as clinical determinations, DAV notes the proposed
regulation does not explicitly characterize the ``in the best
interest'' determination to be a ``medical determination.'' However, we
believe VA is at least strongly implying the phrase ``clinical
determination'' as analogous to ``medical determination,'' according to
38 CFR Sec. 20.101(b), which in turn may import implications for a
veteran's procedural and appellate rights in the case of an adverse
decision.
Current regulations stipulate the Board of Veterans' Appeals (BVA)
jurisdiction over eligibility issues outlined under 38 CFR
Sec. 20.101(b):
[T]he Board's appellate jurisdiction extends to questions of
eligibility for hospitalization, outpatient treatment, and
nursing home and domiciliary care; for devices such as
prostheses, canes, wheelchairs, back braces, orthopedic shoes,
and similar appliances; and for other benefits administered by
the Veterans Health Administration.
However, because VA's proposal makes eligibility determinations
contingent upon a medical determination (presumably to be made by a
Veterans Health Administration clinician), it is in conflict with 38
CFR Sec. 20.101(b), which also states:
[M]edical determinations, such as determinations of the need
for and appropriateness of specific types of medical care and
treatment for an individual, are not adjudicative matters and
are beyond the Board's jurisdiction. Typical examples of these
issues are whether a particular drug should be prescribed,
whether a specific type of physiotherapy should be ordered, and
similar judgmental treatment decisions with which an attending
physician may be faced.
Congress broadly divested all Federal courts but the United States
Court of Appeals for Veterans Claims (CAVC) and the United States Court
of Appeals for the Federal Circuit of jurisdiction to review any
``questions of law and fact necessary to a decision by the Secretary
under a law that affects the provision of benefits by the Secretary to
veterans.'' 38 U.S.C. 511(a).
The question of a veteran's eligibility for benefits administered
by the VA is subject to a question of law and fact necessary to a
decision by the Secretary and is therefore subject to one review on
appeal to the Secretary, where final decisions on such appeals shall be
made by the BVA. (38 U.S.C. Sec. Sec. 7104, 7105, 7108)
Based on VA's proposed regulation, however, should an appeal be
perfected based on a denial of eligibility due to a ``medical
determination,'' it may preclude review by the BVA and thus obviate
appellate review by CAVC. (38 CFR 20.101(b)). We believe such an
outcome would be antithetical to the purposes of the act, and indeed,
would not be in the best interest of the severely disabled veterans
this law aims to serve.
Proposed definition of ``personal care services'' and their use in
calculating the amount of monthly stipend
The law defines ``personal care services'' to mean, ``[s]ervices
that provide the veteran the . . . [a]ssistance with one or more
independent activities of daily living [and] [a]ny other non-
institutional extended care (as such term is used in section 1701(6)(E)
of this title). 38 U.S.C. Sec. 1720G(d)(4). 38 U.S.C. Sec. 1701(6)(E)
further provides, ``[N]oninstitutional extended care services,
including alternatives to institutional extended care that the
Secretary may furnish directly, by contract, or through provision of
case management by another provider or payer.'' (Emphasis added).
VA proposes to define personal care services as, ``[C]are or
assistance of another person necessary in order to support the eligible
veteran's health and well-being, and perform personal functions
required in everyday living ensuring the eligible veteran remains safe
from hazards or dangers incident to his or her daily environment.'' (38
CFR Sec. 71.15).
DAV believes VA's proposed definition is inadequate. In its
discussion, VA limited the scope used to define the term ``personal
care services,'' thus limiting its definition and other elements of the
family caregiver program that are contingent upon its definition. These
elements include identifying the personal care services required by the
eligible veteran, education and training of family caregivers to meet
those needs, and calculation of the monthly stipend.
VA indicates the statutory term ``independent activity of daily
living,'' [d]oes not have a commonly understood usage or meaning,'' and
interprets the phrase to mean, ``[p]ersonal functions required in
everyday living to sustain health and well-being and keep oneself safe
from hazards or dangers incident to one's daily environment. (76 Fed.
Reg. at 26149).
DAV agrees that ``independent activity of daily living'' is not a
commonly used phrase; however, based on the context of the statute, the
goal of this program, and VA health care programs and services that
allow disabled veterans to remain in the community, we believe it is
reasonable for VA to include in its proposed definition, services that
provide the veteran assistance with Activities of Daily Living and
Instrumental Activities of Daily Living.
``Activities of daily living'' are defined as, ``[e]veryday
routines generally involving functional mobility and personal care,
such as bathing, dressing, toileting, and meal preparation.'' Stedman's
Medical Dictionary 30, 22 (28th ed. 2006). Instrumental Activities of
Daily Living are defined as: ``more complex and demanding activities of
daily living required for more independent living[,] . . . includ [ing]
using the telephone, traveling, shopping, preparing meals, doing
housework, taking medications properly, and managing money.'' Stedman's
Medical Dictionary 942, 1724 (28th ed. 2006).
Furthermore, to define ``other non-institutional extended care (as
such term is used in section 1701(6)(E) of this title),'' VA cites 38
U.S.C. Sec. 1701(6)(E) as the statutory authority for the Department to
provide non-institutional extended care and states that it provides
non-institutional care services to enrolled veterans (and as provided
in 38 CFR 17.36(a)) through VA's medical benefits package, which
include but are not limited to ``noninstitutional geriatric evaluation,
noninstitutional adult day health care, and noninstitutional respite
care.'' 38 CFR Sec. 17.38(a)(1)(xi)(B).
By using the phrase ``[a]s such term is used in section . . . ,''
DAV believes that the law is merely citing 38 U.S.C. Sec. 1701(6)(E) to
help define the term ``non-institutional extended care'' and that it
does not preclude other statutory authority that allows the Department
to provide non-institutional extended care and alternatives to
institutional extended care.
Consider for example, 38 U.S.C. Sec. 1710B(a)(5), which discusses
other, ``[n]oninstitutional alternatives to nursing home care as the
Secretary may furnish as medical services under section 1701(10) of
this title.'' In addition, 38 U.S.C. Sec. 1720C provides VA authority
to provide ``[N]oninstitutional alternatives to nursing home care.''
(``[T]he Secretary may furnish medical, rehabilitative, and health-
related services in noninstitutional settings for veterans who are
eligible under this chapter for, and are in need of, nursing home
care.'').
Other statutory authorities that allow VA to provide home-based
health care services include 38 U.S.C. Sec. 1717. This section provides
the authority for VA to provide home health services to an eligible
veteran in any residential setting. (``[A]s part of medical services
furnished to a veteran under section 1710(a) of this title, the
Secretary may furnish such home health services as the Secretary finds
to be necessary or appropriate for the effective and economical
treatment of the veteran . . . The Secretary may furnish home health
services to a veteran in any setting in which the veteran is
residing'').
While section 1717 does not specifically state the authority
provided is for noninstitutional or alternatives to institutional
extended care, VA has used this authority to provide home health
services under HBPC (See VHA Handbook 1141.01, Home-Based Primary Care,
at 1). HBPC is an interdisciplinary home health care program delivering
primary care provided by an interdisciplinary health care team in the
homes of veterans. The goals of this program include ``[P]romoting the
veteran's maximum level of health and independence by providing
comprehensive care and optimizing physical, cognitive, and psychosocial
function,'' and ``[R]educing the need for, and providing an acceptable
alternative to, hospitalization, nursing home care, emergency
department and outpatient clinic visits, through longitudinal care that
provides close monitoring, early intervention, and a therapeutic safe
home environment.'' (Emphasis added.)
Based on these laws and regulations, we look finally at VA's fiscal
year 2012 budget request, for which Congress has provided
appropriations and which lists those extended care programs it has
categorized as ``non-institutional.'' These services include VA, State,
and Contract Adult Day Health Care, Home-Based Primary Care, Homemaker/
Home Health Aide Programs, Spinal Cord Injury Home Care, Telehome
Health, and ``Other Home Based Programs.''
In its proposed definition for ``personal care services,'' VA does
not mention consideration of services beyond those under 38 CFR
Sec. Sec. 17.36(a) and 17.38(a)(1)(xi)(B). Instead, VA proposes to
``[c]linically rate the eligible veteran's inability to perform each of
the seven [Activities of Daily Living] . . . [and] . . . the eligible
veteran's need for supervision or protection based on symptoms or
residuals of neurological or other impairment or injury using the seven
impairments listed in the definition of that term in [38 CFR]
Sec. 71.15.''
While we understand the assessment of need is required clinically
and by law (to provide caregiver training and ongoing support in
providing personal care services to the eligible veteran under 38
U.S.C. 1720G(a)(3)(A)(i)(I) and (II)), we believe it reasonable to
infer Congress intended the personal care services reflect skilled and
unskilled home care services VA currently provides. Neither VA's
proposed definition of personal care services nor the 14 categories of
its assessment instrument reflect the plain reading of the law, which
specifically ``[m]eans services provide[d] [to] the veteran.''
(Emphasis added).
In addition, DAV's concern with VA's proposal is four-fold. One, VA
proposes to use a new 14-item instrument based on ``[t]hree widely
accepted clinical tools for measuring Activities of Daily Living and
functional dependence . . . The Katz Basic Activities of Daily Living
Scale (Katz ADL); the UK Functional Independence Measure and Functional
Assessment Measure (FIM + FAM); and the Neuropsychiatric Inventory
(NPI).'' However, unlike VA's 14-item assessment instrument, the Katz
ADL, UK FIM + FAM, and the NPI have proven reliability (internal
consistency/reproducibility), validity (construct and criterion
validity), responsiveness as an outcome measure, interpretability
(provides clinically relevant event), and burden (cost and time to
administer).
Two, VA proposes to evaluate the level of dependency with ``[T]he
sum of the zero-to-four scores assigned to each of the 14 categories .
. . is then applied to a presumptive level of need: Eligible veterans
who score 21 or higher . . . are presumed to need . . . 40 hours of
care per week . . . an eligible veteran who scores 13 to 20 total . . .
will be presumed to require 25 hours per week of caregiver assistance .
. . [and] . . . an eligible veteran who scores 1 to 12 will be presumed
to require 10 hours per week.'' (76 Fed. Reg. at 26155). We note the
validity and reliability of the Katz ADL instrument has been proven
using a 2-, 3-, or 4-level scale, the UK FIM + FAM with a 7-level scale
and the NPI uses a 6-level scale to measure ``frequency'' and a 3-point
scale to measure ``severity.'' However, VA provides no discussion that
using the Department's proposed 5-level scale (0-4) for its new
instrument will provide equivalent inter-rater reliability and validity
as the three assessment instruments on which it is based.
Three, VA proposes to give equal weight to all scores and/or items
when clinically evaluating the level of a veteran's dependency based on
its 14-item instrument. It is particularly conspicuous that VA provided
no discussion or evidence this particular proposal is clinically or
scientifically valid especially when all 14 items are derived from
three distinct assessment instruments that measure different domains.
Four, VA proposes to use, ``[t]he sum of the zero-to-four scores
assigned to each of the 14 categories . . . to assign a presumed number
of hours required of the caregiver,'' ostensibly, to meet the law's
requirement that VA determine, ``[t]he amount and degree of personal
care services,'' the family caregiver provides the veteran. DAV is
concerned that VA's proposed presumptions eliminate the flexibility
afforded to the clinical team assigned to perform these assessments to
determine how long and how often any one type of assistance or personal
care service a patient would require, which can vary from one patient
to another, to remain in their community of choice. This variability
can be of such value as to change the level of benefits the caregiver
may receive.
With the time burden of performing the Katz ADL instrument
consisting of a short six-item rating scale, the time required to
administer the FIM+FAM is approximately 35 minutes, and the NPI
interview can be completed in 7 to 10 minutes. However, according to a
1994 article in Neurology titled, ``The Neuropsychiatric Inventory:
Comprehensive assessment of psychopathology in dementia,'' a caregiver
of a patient with more psychopathology will require longer interviews
than the presumed 7 to 10 minutes.
Because it is not only the level of caregiver benefit affected by
the final definition of personal care services as well as the
determination of the amount and degree of such services, but also the
family caregiver's responsibility to the veteran, we recommend VA use
these three instruments and determine the actual personal care services
the eligible veteran needs and those personal care services the family
caregiver will be required to provide (VA proposes in 38 CFR
Sec. 17.25(c), an assessment of specific personal care services and a
``[t]reatment plan listing the specific care needs of the eligible
veteran''). We also recommend VA determine the frequency and hours
required to perform such personal care services. Such assessments are
currently performed outside VA as well as the determination of
frequency and hours of home care services a patient needs to remain in
their community. We believe this is a more reasonable and accurate
approach to meet the law's requirement for VA to determine the amount
and degree of personal care services each eligible veteran needs.
Beneficiary travel limitations
VA's family caregiver beneficiary travel proposal, based on 38
U.S.C. Sec. 1720G(a)(6)(C), would be subject to any limitations or
exclusions under Part 70 or title 38. VA indicated there is no reason
to believe that section 1720G extends beneficiary travel benefits to
family caregivers but does not also require the equal application of
the limitations that apply to all individuals eligible for benefits
under part 70.
DAV recommended VA take the opportunity to revise its regulations
to meet the travel and transportation policies contained in its own
2009 Geriatric and Extended Care Strategic Plan.
This strategic plan, which has been submitted to Congress, notes,
``[t]he major goal of community-based extended care is to reduce or
eliminate the need for veterans to travel to access care. Nonetheless,
assistance in transportation options is a consistently cited top need
for informal caregivers. VA does allow caregivers to travel with
veterans who themselves have a travel benefit, if their presence is
necessary to the well-being of the veteran. But this does nothing for
veterans lacking the benefit, or for assisting caregivers to
participate in support groups.''
Significant barriers identified by VA in the strategic plan
include, ``[A]vailability of transportation services for disabled
individuals is variable, insufficient, requires effort to access, and
is often costly. Likewise, transportation is often provided only for
care recipients and not for caregivers. Eligibility requirements are
strict and round-trip duration times are excessive for many patients.''
Moreover, ``[f]indings from a 2006 survey of VA health care staff
(primarily social work, nursing, and physicians working in CLCs and
HBPC programs) rating the perceived importance and availability of a
range of caregiver support services. Inadequate transportation was
cited most frequently by VA staff as a barrier to accessing [Adult Day
Health Care] and caregiver support groups.''
Notably, issues with the eligibility requirements were specifically
discussed in the strategic plan. ADHC has strong appeal for veterans
whose family caregivers must be absent (e.g., for work or other
commitments) during workdays. ADHC may be provided for a specific
number of days outside the number of routinely scheduled visits. These
days would be counted as respite care under 38 U.S.C. 1720B since these
ADHC visits are temporary additions to the routine services the veteran
already receives.
``[V]eterans with an indication for medical transport and meeting
eligibility criteria, (outlined in Beneficiary Travel Handbook 1601B.05
July 29, 2008), may be eligible for special mode transportation to and
from medical appointments. Caregivers may ride with the veteran if
there is a determined need for an attendant. Although this benefit is
available at all VA medical centers, the extent of its use can vary
considerably based on the definition of ``medically indicated.'' In
general, this refers to veterans requiring air or ground ambulance,
wheel chair transportation, or transportation specially designed to
transport disabled persons. ''
The Beneficiary Travel Handbook 1601B.05 was recently revised but
such revisions did not address the issues surrounding the eligibility
criteria. The strategic plan recommendations regarding beneficiary
travel include (#26) a, ``[n]eeds based (not eligibility based)
beneficiary travel for frail/disabled veterans.''
We urge VA to reconsider its proposal to provide to family
caregivers beneficiary travel benefits, ``[s]ubject to any limitations
or exclusions under part 70 as well.'' (76 Fed. Reg. at 26153). Doing
so would include family caregivers of those veterans who already face
barriers to use this critical and needed benefit to access support and
services.
Madam Chairwoman, DAV believes VA has a unique opportunity to
address within its health care system, a national health care challenge
with regard to informal caregivers. This new VA program could be a
blessing to caregivers of severely disabled veterans and a benevolent
response to those grievously injured in war and in military duties. We
believe the comments, concerns, and recommendations we submitted will
make the caregiver support program more effective, more humane, and one
that will reach more veterans as intended by Congress and the American
people.
Again, we thank you for the opportunity to present our views on
VA's IFR for title I of P.L. 111-163. The DAV is committed to working
constructively with Congress, VA, and the Administration to ensure
family caregivers do not remain undertrained, underpaid,
underappreciated, undervalued, and exhausted by their duties.
Statement of Tom Tarantino, Senior Legislative Associate,
Iraq and Afghanistan Veterans of America
Madam Chairwoman, Ranking Member, and Members of the Committee, on
behalf of Iraq and Afghanistan Veterans of America's 200,000 member
veterans and supporters, I thank you for inviting me to testify at this
hearing to share our members' views on this important issue.
My name is Tom Tarantino and I am the Senior Legislative Associate
with IAVA. I proudly served 10 years in the Army beginning my career as
an enlisted Reservist and leaving service as an Active Duty Cavalry
Officer. Throughout those 10 years, my single most important duty was
to take care of other soldiers. In the military, they teach us to have
each other's backs. Although my uniform is now a suit and tie, I am
proud to work with this Congress to ensure the entire country has the
backs of America's servicemembers and veterans.
The fight is not over when our warriors leave the combat zone. They
have made a commitment: we have asked them to sacrifice their time and
families, to risk their lives and limbs, to protect us. It is only
right that we as a people, as a Nation, make good on our commitment to
take care of our warriors, especially when they leave pieces of
themselves on the battlefield. Taking care of our veterans often means
taking care of their families.
IAVA strongly supports the Caregivers Assistance Program. We
recognize that wounded warriors deserve the chance to live the fullest
life possible. Whether their wounds are physical, mental, or some
combination of the two, veterans heal better and faster when they are
comfortable and happy with access to the support of family and friends.
If the choice is between being warehoused in a VA or DoD facility or
recovering at home surrounded by family and friends, IAVA believes that
the compassionate choice and the logical choice are one and the same.
As one spouse of a wounded warrior put it, ``[We] just want to be
included in our society rather than being segregated.''
It is our duty to ensure that the any assistance program fully
meets the needs of those it is designed to help. To that end, IAVA
would like to make some suggestions about modifications to the Interim
Final Rule for the Caregivers Assistance Program.
1. The GAF score required to enter the program is too restrictive. In
addition, the requirement to have a continuously low GAF score
is restrictive and self-defeating.
The Interim Final Rule sets several criteria for entry into the
program; one of these is evaluation using the General Assessment of
Functioning (GAF). To be eligible for the program, a veteran must have
a GAF score of 30 or below at the beginning and end of a 90 day period
and the score cannot rise above 30 in the interim. In other words, 3
continuous months of a 30 or below GAF score.
The first problem we see is that a GAF score of 30 corresponds to
such severe impairment that a veteran would need treatment that is
beyond the scope of a family caregiver. Higher GAF scores still present
serious problems: a GAF score of 31-40 denotes ``some impairment in
reality testing and communication or major impairment in several
areas'' including being unable to work. A GAF score of 41-50 denotes
``Serious symptoms (e.g., suicidal ideation, severe obsessional
rituals, frequent shoplifting) OR any serious impairment in social,
occupational, or school functioning'' including the inability to keep a
job or maintain friendships.
The point of any rehabilitation is to help veterans get better.
Under the VA rule, however, if a veteran shows improvement by receiving
a single GAF score above 30, he or she becomes ineligible to receive
Caregivers Assistance. The VA rule appears to force a choice: get
treated, get better and be ineligible or remain non-functional with a
poor quality of life and be eligible.
IAVA believes that relaxing the GAF criteria would be in the best
interests of veterans. Raising the GAF score required to participate in
the program to as high as 50 would still mean that veterans with
profound mental health issues would be eligible for the program and not
be penalized for improving.
2. Stronger coordination with DoD programs and third-party providers
is necessary.
The VA definition of primary care team on 26149 of Vol. 76 No. 87
of the Federal Register does not make it clear who composes that team.
Because a significant population eligible for this program are retired
medically from service or covered by insurers outside the VA, many
receive treatment outside the VA system, for example from TRICARE
providers and third-party providers under fee-for-service programs.
Veterans who are diagnosed with mental or physical disabilities that
make them eligible for the Caregivers Assistance Program after
separation from service may also have been treated by physicians and
clinicians outside the VA system, i.e. through private insurance. With
pending legislation that is likely to expand fee-for-service programs
and third-party providers, situations where a veteran is under the care
of a doctor outside the VA system will only increase. It is imperative
that VA primary care teams consult these doctors and utilize their
assessments and that this requirement is explicitly stated.
IAVA has spoken with veterans or family members being treated
outside of the VA system whose treating physicians have never been
consulted by VA clinicians making eligibility determinations or
treatment recommendations. In one case, a clinical psychiatrist who for
over 5\1/2\ years has treated a veteran with traumatic brain injury
(TBI) and mental health issues stemming from his war injuries has never
spoken to or been contacted by VA personnel in any capacity. If such a
long-standing relationship does not qualify for the ``primary care
team'' then what will?
IAVA does not support the contention that clinicians outside the VA
should make the call on who is eligible for the program. It is a VA
program and the VA should administer it. However, IAVA believes that
review of existing patient records and consultations with non-VA
clinicians who are treating a particular veteran should form at least
part of the basis for decisions. Clinicians who determine entry into
the program and progress in the program must consult with clinicians
who are actually treating the veteran. There is no need to reinvent the
wheel and delay veterans and their families' entry into the Caregivers
Assistance Program.
3. Differentiation between Primary Family Caregivers (PFC) and
Secondary Family Caregivers (SFC) needs to be lessened.
Qualifications for SFC, particularly the requirements reside
with the veteran, need to be relaxed.
IAVA understands the levels of caregiver differentiation and agrees
that different levels of commitment should receive different levels of
benefits. The structure that the VA has proposed for the levels of
responsibility and the number of Family Caregivers (FC), however, will
negatively impact family caregivers, particularly during periods of
respite care. Accommodation in the VA's interpretation of 38 CFR 71
should be made for exceptional circumstances and the authority to
accommodate should be made clear as well.
VA has established that there can only be one PFC, although there
does not need to be one at all. VA has also established that there can
be a maximum of only two SFC, even if there is no PFC. A veteran,
therefore, could have between 1 and 3 family caregivers. A veteran may
have an unlimited number of General Caregivers (GC). VA describes GC as
``Good Samaritans'' [Federal Register Vol 76 No 87 26152] and that
corresponds to the level of benefits they receive: just enough to make
them helpful with ``less critical personal care.'' This means that the
bulk of care rests on the shoulders of PFC and SFC. The difference
between PFC and SFC are that PFC receive all the benefits of SFC and a
monthly stipend, respite care for at least 30 days per year and health
care coverage through CHAMPVA. Any FC must be ``(i) The eligible
veteran's spouse, son, daughter, parent, step-family member, or
extended family member; or (ii) Someone who lives with the eligible
veteran full-time or will do so if designated as a family caregiver.''
Keeping in mind the above restrictions and benefits, let us
consider the following scenario: a wounded veteran without a large
family who has no PFC. Essentially, with the requirements for entry
into the Caregivers Assistance Program, that veteran will rely on 1 to
3 SFC for assistance with the vast majority of their specialized needs.
The veteran may not have a PFC for a variety of reasons: inability of
family or friends to commit as the primary source of care, desire of
the veteran not to be a burden on family, or a small family or no
family, i.e. an orphan. Whatever the reason, if there is no PFC then
the SFC should be pro-rated a monthly stipend based upon their level of
care. This will help defray the costs of care for the SFC, who receive
the same training and are expected by the VA to perform the same tasks
at the same level of competency as the PFC. One can easily imagine a
scenario with a rotation of SFC who share the responsibilities of care
on a rotating basis and they should be eligible for benefits
commensurate with their level of responsibility.
In addition, the restriction on FC to live with the veteran should
be relaxed. For example, if a spouse of a wounded veteran is the PFC
then a sibling or parent might be willing to be a SFC. However, under
the current interpretation, a best friend or a cousin would not be
eligible to be a SFC unless that person lives with the veteran ``full-
time.'' This distinction does not recognize that in some cases
immediate family members may not have as close a relationship with a
veteran as the veteran's best friend, for example. If the SFC
``generally serves as a back up to the Primary Family Caregiver''
[Federal Register Vol. 76 No. 87 26148] then anyone with (1) a close
relationship that mirrors that of a family member and (2) who is
willing to accept the responsibility of an SFC should be classified as
an ``extended family member'' and allowed to function as an SFC if the
veteran and/or PFC approve regardless of whether or not they are
domiciled with the veteran. In addition, the definition of ``Someone
who lives with the designated veteran full-time'' should be interpreted
to recognize that ``full-time'' living might occur on a part-time basis
as in the next suggestion.
4. The provision of ``respite care'' needs to be clearly defined
What respite care consists of or entails is not clearly defined but
in practice has been either placing a veteran into a VA hospital or
placing a home health care aide in the veteran's home. While these are
acceptable alternatives, with the availability of SFC and GC creating
an unfamiliar environment should be the last resort rather than the
first option. The practice of the provision of respite care is too
rigid and, as one caregiver put it, ``People won't use it because it
doesn't meet their needs'' nor does it meet the intent of the
Caregivers Assistance Program.
Another scenario similar to the ones given above might entail the
respite of a PFC. During this period, VA will provide ``respite care.''
In conjunction with the suggestion above, relaxing the definition of
extended family would allow the option of a SFC to move in with a
veteran full-time for a short period of time, enough to allow respite
for a FC while still giving the veteran the continuity of care and home
life the program is intended to provide.
In addition, pro-rating a stipend for SFC would allow them to
defray part of the costs associated with providing respite for another
FC. Covering travel for the respite caregiver would also be beneficial.
The current interpretation appears to assume that all who take on the
role of a FC reside in geographic proximity. This is often not the case
and accommodation should be made. Provision should be made for covering
the actual costs of travel, as is done under TRICARE.
While some might contend that these measures will add costs to the
program, the associated benefits of meeting the intent of the program
(allowing a veteran to remain in a home environment while recovering)
and the cost of removing a veteran to a VA hospital or providing in-
home care through an unfamiliar home health care aide are likely
greater.
IAVA understands the need establish solid criteria to receive
caregivers assistance. With budgets coming under tremendous scrutiny,
government agencies must do their utmost to make certain that there is
not even the perception of fraud, waste or abuse. However, the
Caregivers Assistance Program is not a boondoggle or a giveaway. It is
not a program designed to make anyone wealthy. It is not even designed
to make anyone, veteran or family member, whole again. The Caregivers
Assistance Program merely provides the ability to exist at an extremely
modest level while helping a loved one.
The story of Sarah Wade, who has been instrumental in getting this
program instituted, is a great example. When her husband, Ted, was
injured, she was enrolled in college with the hope of becoming a
Foreign Service officer; Ted was going to become a commissioned officer
through the Army's Green to Gold program. Our country lost the future
contributions of a fantastic couple dedicated to public service; the
Wade's lost their plans for the future. Now, Sarah cares for Ted and
his very modest benefits from medical retirement and SSI, as well as
her part--time work, sustains them. Had life continued for them as
planned, they would have made very comfortable salaries. Now though, as
Sarah succinctly puts it ``Ted was capped at an E-5 for the rest of his
life. Our standard of living was frozen.''
While the ``VA does not intend that the stipend replace career
earnings'' [p. 26155, Federal Register Vol. 76, No. 87], caring for a
veteran who qualifies for the Caregivers Assistance Program is a full-
time job in itself. The income from the Caregivers Assistance Program
will not make anyone rich nor will it place veterans and their families
remotely close to where they would have been financially before their
injuries. But it will give them, and thousands of other veterans and
their families, a small cushion and a little peace of mind while their
(and our) heroes recover.
IAVA believes that the Congress, the VA and the American people
have recognized how important this issue is. We support the efforts of
all those who are dedicated to taking care of our warriors when they
return home, especially those wounded warriors who need our help the
most. We hope that our comments help make that goal a reality.
Statement of Barbara Cohoon, Ph.D., R.N., Government Relations
Deputy Director, National Military Family Association
Chairwoman Buerkle and Distinguished Members of this Subcommittee,
the National Military Family Association would like to thank you for
the opportunity to present testimony on ``Implementation of Caregiver
Assistance: Moving Forward.'' The National Military Family Association
will take the opportunity to discuss our concerns regarding the
Department of Veterans Affairs' Caregiver Implementation Plan and
several issues of importance to family caregivers of the wounded, ill,
and injured servicemembers, veterans, their families, and caregivers in
the following subject areas:
I. VA Caregiver Implementation Plan
II. Additional Caregiver Compensation
III. Senior Oversight Committee
VA Caregiver Implementation Plan
While our Association is extremely appreciative of Members of
Congress for the passage of this landmark legislation, we have some
concerns regarding the Department of Veterans' Affairs' (VA's)
implementation plan. These concerns include the need for these
important caregiver benefits to start earlier in the servicemember's
recovery process, retroactive stipend to the implementation of the law
on January 31, 2011, and the establishment of a Department of Defense
(DoD) and VA seamless transition of caregiver benefit.
Illness
Illness was one condition that was intended to be included in the
caregiver provision in Caregivers and Veterans Omnibus Health Services
Act of 2010--Public Law 111-163. Congressman Michael Michaud (D-2nd/ME)
introduced the Caregiver Assistance and Resource Enhancement Act (CARE
Act, H.R. 3155). According to his press release on July 29, 2009,
``[t]he bill would establish a caregiver program to help family and
non-family members who provide care for disabled, ill, or injured
veterans.'' This bill passed the full House of Representatives. As the
new caregiver program was launched, Secretary of Veterans Affairs Eric
K. Shinseki commented on February 12, 2011, ``They [caregivers] are
critical partners with VA in the recovery and comfort of ill and
injured veterans. The law states, ``[n]eed for supervision or
protection based on symptoms or residuals of neurological or other
impairment or injury.'' The inclusion of the words ``or other
impairment'' could include illness related conditions. However, illness
was not included in the VA's interpretation of the law. This creates
the potential for DoD's caregiver compensation benefit and the VA's
caregiver benefit to apply to different sets of servicemembers and
veterans. DoD's includes illness and the VA's would not. This could
potentially create a disparity in benefits and a lack of a seamless
transition regarding compensation. Maintaining financial compensation
will be key in ensuring these families' financial situations stay
stable during transition from active duty to veteran status. The
frequent mention of our Armed Forces members' exposure to toxic
chemicals from burn pits may have a long-lasting effect. Therefore,
service-connected illnesses need to be included as a qualifying
condition. Our Association recommends that illness be included as an
eligibility requirement by the VA.
Starting Time of the Benefit
The time to acknowledge the caregiver's important role and to
implement the caregiver benefit is while the wounded, ill, and injured
servicemember is still on active duty status. The self-selection
process of a caregiver occurs during the early phase of the recovery
process. All Service branches are holding onto their wounded, ill, and
injured 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 the VA's important
programs and services. Therefore, we recommend that the designation of
caregiver benefits be established while they are still upstream on
active-duty beginning with the start of the Medical Evaluation Board
(MEB) process, rather than wait until they have transitioned to veteran
status.
Waiting until after the receipt of a medical separation date to
start the caregiver benefit application process will prevent caregivers
from being able to receive training and obtain benefits early enough in
the recovery phase to make a difference in their quality of life and in
the quality of care they provide. Servicemembers often receive care in
a military hospital and/or VA Polytrauma Center, recover at home, and
then return to the hospital for follow-on care and subsequent
surgeries. The VA's training requirement will prevent eligible
caregivers from receiving any advance training for in-home care until
the servicemember is being medically discharged from the military. Our
Association finds this troubling because a recent survey by the
National Alliance for Caregiving, ``Caregivers of Veterans--Serving on
the Homefront,'' found a top challenge faced by veteran caregivers was
not knowing what to expect medically with the veteran's condition and
not knowing how to address Post-Traumatic Stress Disorder (PTSD) or
mental illness. Caregivers have frequently stated they did not know how
to care for a servicemember or veteran when they were discharged from
the hospital and went home during their recovery phase. This can cause
increased stress on an already anxious caregiver. Our Association
believes the sooner you provide caregivers with the skills they need to
perform their duties, the sooner they will be able to provide a higher
quality of care to the wounded, ill, and injured servicemember and
veteran. The VA's decision to wait until the servicemember is medically
discharged from the military before beginning the training program will
certainly prevent this valuable training opportunity from occurring at
the appropriate time to make a difference in the quality of care of the
wounded, ill, and injured servicemember.
The delay in eligibility also impacts the ability to obtain time
sensitive needed benefits, such as access to mental health counseling,
health care benefits, and financial compensation. This especially
impacts non-spouse caregivers who would greatly benefit from these
services. A recent VA press release stated 17 percent of caregiver
applicants were from mothers. According to the ``Caregivers of
Veterans--Serving on the Homefront'' survey, one in four respondents
were parents caring for Operation Enduring Freedom and Operation Iraqi
Freedom veterans.
Our Association is hearing that caregivers are reaching the stage
of burnout and many are deciding to walk away from their roles as
caregivers. According to ``Caregivers of Veterans--Serving on the
Homefront'' survey, there are widespread impacts on the caregiver's
health, such as increased levels of stress and anxiety (77 percent),
and not sleeping (77 percent), and a decrease in the utilization of
healthy behaviors, such as seeing their medical provider. The caregiver
survey highlighted the increased stress our veteran caregivers are
under compared to their National counterparts. The law and
Congressional intent were to allow the VA to provide assistance through
value-added benefits to the caregiver early enough in the process to
make a difference and prevent the development of physical health,
mental health, and/or financial problems. The longer the VA waits to
begin benefits, the more opportunity there is for the caregiver's
quality of life to worsen and for the caregiver to reach the stage of
burnout. Caregivers of our wounded, ill, and injured need these
services sooner in the recovery process than later.
The interim final rule states, ``we do not believe that Congress
intended to authorize prolonged caregiver benefits for active duty
servicemembers, particularly because they have authorized Department of
Defense to provide similar benefits to active duty servicemembers.''
Our Association would disagree with this statement. They are two
separate benefits with significant differences. The DoD's benefit does
NOT include training, health care, counseling, or respite care, which
are only included in the VA's caregiver benefit. Reliance on the DoD
program only further delays caregivers from receiving health care,
counseling, respite, and training benefits as it was intended to have
been received. Also, DoD's benefit only provides compensation in the
form of a payment to the servicemember who meets certain eligibility
criteria and has a caregiver. The benefit is geared more towards the
VA's aid and attendance benefit in regards to establishing the level of
compensation received by the servicemember rather than the VA's new
caregiver benefit. It would be better if these two benefits married up
with a seamless transition of the aid and attendance benefit. The DoD
benefit should not be considered a ``caregiver benefit.''
Starting all Programs at the Same Time
The VA has decided to begin all of the benefits at the same time.
They could very easily make training information and access to valuable
VA and DoD resources available much earlier in the process than their
proposed timeline. Again, the earlier access to pertinent resources and
information related to VA and DoD benefits for the servicemember,
veteran, and caregivers, will only be a win-win for everyone involved.
Allowing early access to information validates the important role
caregivers provide. Plus, an educated caregiver will only provide
better care in the long run. Our Association recommends the VA begin
caregiver benefits as early as possible while the servicemember is
still on active duty status and not wait until they have received a
final determination.
Stipend
Our Association, along with other Veteran and Military Service
Organizations, frequently state how important this piece of legislation
is for our Nation's caregivers. Every day the VA delays its
implementation only places additional stress on an already strained
population. We really cannot afford to put this off even one more day.
The least the VA could do in order to compensate for its delay is to
provide retroactive stipend payments to caregivers from the original
date of implementation required by law.
Our Association appreciates the VA acknowledging the need to
compensate caregivers for providing direct hands-on medical care.
However, we notice that the VA did not include a provision to pay
caregivers for performing non-medical care services. Our Association
has always proposed that financial compensation should recognize the
types of medical and non-medical care services provided by the
caregiver. The law states ``the amount of the monthly personal
caregiver stipend provided under subparagraph (A)(ii)(V) shall be
determined in accordance with a schedule established by the Secretary
that specifies stipends based upon the amount and degree of personal
care services provided.'' The law allows the Secretary of the VA the
flexibility to include non-medical care services to be captured. The
law also states ``stipends,'' not stipend, can be provided.
The reason for wanting to include a non-medical compensation
benefit is because there are many hours in a day spent performing these
activities that play an integral part in maintaining the servicemember
and veteran's quality of life yet are not captured by the VA's U.S.
Department of Labor's Bureau of Labor Statistics (BLS) stipend matrix.
Plus, Section 1115 of title 38 of the United States Code provides
compensation to the veteran only when the spouse cannot perform the
duties of a caregiver. This same level of stipend should be applied to
non-medical care services provided by caregivers to servicemembers and
veterans.
CHAMPVA
Our Association is pleased caregivers will have the opportunity to
benefit from the Civilian Health and Medical Program of the Department
of Veterans Affairs, known as CHAMPVA. The population most likely to
use this benefit will be the veteran's parent. However, there may be
spouses who will qualify for this benefit. If the veterans were
medically separated and were not medically retired, their spouses and
children do not qualify for TRICARE (Department of Defense's health
care benefit) following separation from the Service. Under this
circumstance, veteran spouses and their children qualify for CHAMPVA
once the veteran obtains a 100 percent disability rating from the VA.
The veteran spouse, who qualified under the ``Caregiver'' benefit,
should retain CHAMPVA coverage following revocation of the caregiver
benefit because the veteran had received a 100 percent disability
rating by the VA. We want to ensure spouses of 100 percent disabled
veterans, no matter how they initially qualified for the CHAMPVA health
care benefit, retain this benefit.
CHAMPVA coverage should be a retroactive benefit. Caregivers that
are currently submitting applications should be told to keep all of
their health care receipts from the time the caregiver law should have
been implemented, January 31, 2011. The eligible caregiver would submit
their receipts once they meet the VA caregiver requirement. The VA
should then provide CHAMPVA coverage for eligible caregivers back to
this date. Future caregivers should be told to keep all of their health
care receipts from the time the application was submitted. The VA
should then cover all future eligible caregivers for CHAMPVA back to
when the application process was submitted. They should be encouraged
to seek care from CHAMPVA providers in the interim period. The
Department of Defense did this exact same procedure for the new TRICARE
Young Adult benefit. Eligible young adults were told to keep all of
their medical receipts and submit them once the law was implemented.
Mental Health Services
The interim final rule states, ``[t]he counseling provided to
family caregivers is intended to treat those family caregivers,
independent of whether that treatment is likely to support the clinical
objectives of the eligible veteran's treatment plan.'' The interim
final rule further states the VA will provide these same mental health
services to Secondary family caregivers as well as Primary family
caregivers. The interim final rule discusses this information under the
``Supplementary Information'' section. However, when the counseling
benefit is discussed in Sec. 71.40 Caregiver benefits, it states all
counseling services are described under Sec. 71.50. This section states
``VA will provide . . . in connection with the treatment of a
disability for which the veteran is receiving treatment through VA.''
It appears to contradict what was stated earlier. Our Association would
like to make sure that this is clearly stated in both Sections that
Primary and Secondary family caregivers will receive counseling
services independent of whether that treatment is likely to support the
clinical objective of the eligible veteran's treatment plan as intended
by the VA's interim final rule.
Aggravated While in the Line of Duty
According to the interim final rule, the words ``incurred or
aggravated a serious injury'' must have occurred while in the line of
duty. It is unclear if a veteran's caregiver would qualify for this
benefit if the injury, obtained while on active duty but was now
aggravated to the point of needing caregiver assistance, occurred on
veteran status. An example would be a veteran who has an embedded piece
of IED shrapnel in the brain that began to leak toxins or needed to be
surgically removed resulting in a worsening medical condition and the
requirement of a caregiver. The veteran would still benefit from other
VA programs, such as aid and attendance, but his/her caregiver could no
longer qualify for this important benefit. Our Association would like
to ensure caregivers are still eligible for the VA's caregiver benefit
even if the serious injury was aggravated after the servicemember
became a veteran.
Report on Expansion of Family Caregiver Assistance
Our Association is concerned that the VA did not reference a report
on the feasibility and advisability of expanding the caregiver benefit
to family caregivers of veterans who have a serious injury incurred or
aggravated in the line of duty while on active duty before September
11, 2001. We want to make sure the VA fulfills this reporting
responsibility because it is an integral part of the implementation of
the caregiver program.
Additional Compensation for the Caregiver
Our Association is appreciative of the generous benefits included
in the Caregivers and Veterans Omnibus Health Service Act of 2010.
However, there were some areas not addressed. Our Association would
like to take the opportunity to present recommendations.
A report by the Center for Naval Analysis determined 85 percent of
caregivers left employment or took a leave of absence from work or
school while performing their caregiver duties. They found that the
average loss of earnings per caregiver was approximately $3,200 per
month. The financial strain placed on the family of our wounded, ill,
and injured servicemember and veteran by the caregiver leaving outside
employment has a trickle down affect. Caregivers who have been saving
for retirement now find they are ineligible for their employers'
401(k)s. We believe a mechanism should be established to assist
caregivers to save for their retirements, for example, through the
Federal Thrift Savings Plan.
Once the recovery process is finished and the veteran's care has
stabilized, the caregiver may decide to work outside the home in order
to help make financial ends meet. These caregivers may need the ability
to learn new skills in order to compete in today's workforce. We
recommend VA offer these caregivers the opportunity to participate in
VA's vocational rehabilitation programs and help retool the caregiver's
resume. We must also find innovative ways to encourage civilian and
government employers to hire these caregivers, especially when the
veteran is unable to work.
According to the Center of Naval Analysis, wounded, ill, and
injured 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 covered by NGOs and charities.
Relocation Allowance for Caregivers
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.
The National Military Family Association suggests the VA should pay
for the caregivers move as part of the VA caregiver law. We recommend
that impending medically retired single servicemembers who are eligible
for the VA's caregiver benefit be allowed the opportunity to have their
caregiver's household goods moved, too. This should be allowed for the
eligible primary caregiver and their family. The reason for the move is
to allow the impending medically retired single 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 impending 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
have all the health care services required for treating and caring for
the impending medically retired servicemember. Instead of trying to
create the services in the area, a better solution may be to allow the
impending 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 help of the VA caregiver team: Federal Recovery Coordinator
(case manager); the servicemember's physician; the servicemember, and
the caregiver. All aspects of care for the impending medically retired
servicemember and their caregiver shall be considered. These include a
holistic examination of the impending 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
impending medically retired servicemember and eligible for the VA's
caregiver benefit along with his/her caregiver.
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 first-hand
the challenge of trying to juggle the needs of the parents along with
the needs of their children, and are referred to as the ``sandwich''
generation. Parent caregivers worry about who will care for their
wounded son or daughter as they age and are unable to fulfill the role
of caregiver. Caregivers may reach burnout and will need alternative
solutions for providing care. The VA needs to be cognizant of the ever
changing landscape and needs of their veteran population and those who
care for them. The VA needs to offer alternative housing arrangements,
such as assisted living facilities and family/retirement villages,
which allow a diversified population to live together in harmony. This
will go a long way in allowing for family units to stay together,
foster independent living, and maintain dignity for the veteran.
Brooke Army Medical Center (BAMC) has recognized a need to support
our wounded, ill, and injured families by expanding the number of
guesthouses co-located within the hospital grounds and providing a
family reintegration program for their Warrior Transition Unit. The on-
base school system is also sensitive to issues surrounding these
children. A warm, welcoming family support center located in guest
housing serves as a sanctuary for family members. VA medical facilities
could benefit from looking at successful programs like BAMC's that
embrace the family unit and commit to building family friendly
environments of care for our wounded, ill, and injured 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
requirements for a full spectrum of mental health services--from
preventative care and stress reduction techniques, to individual or
family counseling, to medical mental health services--will continue to
grow. It is also important to note if DoD has not been effective in the
prevention and treatment of mental health issues, the residual will
spill over into the VA health care system. The VA must be ready. They
must partner with DoD and State agencies in order to address mental
health issues early on in the process and provide transitional mental
health programs. They must maintain robust rehabilitation and
reintegration programs for veterans, their families, and caregivers
that will require VA's attention over the long-term.
The National Military Family Association is especially concerned
with the scarcity of services available to the veterans' families and
caregivers as they leave the military following the end of their
activation or enlistment. Military families will no longer qualify for
many of the Services' family support programs and DoD's Military
OneSource. Our Association recommends the VA increase outreach to
veterans, their families and caregivers, and the communities they live
in about available mental health resources to help them deal with the
residual effects of long frequent deployments.
Children of the Veteran and Caregiver
The impact of the wounded, ill, and injured veteran on their
children is often overlooked and underestimated. These children
experience a metaphorical death of the parent they once knew and must
make many adjustments as their parent recovers. Many families relocate
to be near the treating Military Treatment Facility (MTF) or the VA
Polytrauma Center in order to make the rehabilitation process more
successful. As the spouse focuses on the rehabilitation and recovery,
older children take on new roles. They may become the caregivers for
other siblings, as well as for the wounded parent. Many spouses send
their children to stay with neighbors or extended family members, as
they tend to their wounded, ill, and injured spouse. Children get
shuffled from place to place until they can be reunited with their
parents. Once reunited, they must adapt to the parent's new injury and
living with the ``new normal.'' We must remember the caregiver may not
be the veteran's spouse. They may be the wounded veteran's parent,
sibling, or friend. These children are also affected and Congress and
the VA must be cognizant of their potential psychological needs as
well.
We encourage partnerships between government agencies, VA, DoD, and
State agencies and recommend they reach out to those private and non-
governmental organizations who are experts on children and adolescents.
They could identify and incorporate best practices in the prevention
and treatment of mental health issues affecting these children. We must
remember to focus on preventative care upstream, while still in the
active duty phase, in order to have a solid family unit as they head
into the veteran phase of their lives. VA, DoD, State, and our local
communities must become more involved in establishing and providing
supportive services for our Nation's children.
Expansion of Caregiver Pilot Programs
The VA currently has eight caregiver assistance pilot programs to
expand and improve health care education and provide needed training
and resources for caregivers who assist disabled and aging veterans in
their homes. These pilot programs are important; however, there is a
strong need for 24-hour in-home respite care, 24-hour supervision,
emotional support for caregivers living in rural areas, and coping
skills to manage both the veteran's and caregiver's stress. We are
appreciative that P.L. 111-163 will provide for increased respite care
hours, along with counseling and mental health services for caregivers,
but neither addresses the 24-hour supervision. We recommend if these
pilot programs are found successful, they should be implemented by the
VA as soon as possible and fully funded by Congress. Another program
not addressed is the need for adequate child care. The caregiver may
have non-school aged children of their own or the wounded, ill, and
injured veteran may be a single parent. The availability of child care
is needed in order to attend their medical appointments, especially
mental health appointments. Our Association encourages the VA to create
a drop-in child are program for medical appointments on
their premises or partner with other organizations to provide this
valuable service.
Senior Oversight Committee
The National Military Family Association is appreciative of the
provision in the National Defense Authorization Act for Fiscal Year
2009 (NDAA FY09) continuing the DoD and VA Senior Oversight Committee
(SOC) until December 2010. The DoD established the Office of Wounded
Warrior Care and Transition Policy to take over the SOC
responsibilities. The office has seen frequent leadership and staff
changes and a narrowing of their mission. We urge Congress to put a
mechanism in place to continue to monitor this Office for its
responsibilities in maintaining VA and DoD's partnership and making
sure joint initiatives create a seamless transition of services and
benefits for wounded, ill, and injured servicemembers, veterans, their
families, and caregivers.
Recommendations
Broaden eligibility criteria to meet Congressional
intent;
Establish a DoD and VA seamless transitional caregiver
benefit;
Provide retroactive stipend payments to the original date
of implementation required by law;
Begin caregiver benefits as early as possible while the
servicemember is still on active duty status and not wait until they
have received a final determination;
Coordinate and collaborate health care and behavioral
health care services between the VA, DoD, and State and governmental
agencies in sharing of resources;
Approve relocation allowances and provide alternative
housing and living arrangements;
Increase outreach to veterans, their families, and the
communities they live in about available benefits;
Provide opportunities for the entire family to reconnect
and bond as a family again;
Provide a holistic approach to care that incorporates the
impact of the wound, illness, or injury on the family unit;
Expand all of the VA's caregiver pilot programs; and
Continue oversight of the SOC/Office of Wounded Warrior
Care and Transition Policy by Members of Congress.
The National Military Family Association would like to thank you
again for the opportunity to provide testimony on the VA's caregiver
implementation plan for P.L. 111-163. Military families support the
Nation's military missions. The least their country can do is make sure
servicemembers, veterans, their families, and caregivers have
consistent access to high quality health and behavioral 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 servicemembers, veterans, their
families and caregivers, and survivors.
Statement of Paralyzed Veterans of America
Chairwoman Buerkle, Ranking Member Michaud, and Members of the
Subcommittee, Paralyzed Veterans of America (PVA) would like to thank
you for the opportunity to submit our views on the ongoing
implementation of the caregiver provisions of P.L. 111-163, the
``Caregivers and Veterans Omnibus Health Services Act.'' Additionally,
we appreciate the opportunity to outline the concerns that we raised in
our comments on the Interim Final Rule that the Department of Veterans
Affairs (VA) published on May 5, 2011, on the final implementation of
the caregiver program. We urge Congress to continue to conduct
oversight of the VA's implementation plan to ensure that its full
intent is being met. Moreover, we encourage the Subcommittee to
continue to follow-up with the VA on the reporting requirements for the
next 2 years.
PVA has 65 years of experience understanding the complex needs of
spouses, family members, friends, and personal care attendants that
love and care for veterans with life-long medical conditions. As a
result of today's technological and medical advances, veterans are
withstanding combat injuries and returning home in need of medical care
on a consistent basis. Such advances are also prolonging and enhancing
the lives and physical capabilities of injured veterans from previous
conflicts. No matter the progress of modern science, these veterans
need the health-care expertise and care from a health team comprised of
medical professionals, mental health professionals, and caregivers. As
a part of the health care team, caregivers must receive ongoing support
to provide quality care to the veteran.
PVA and its partners worked extremely hard to get comprehensive
caregiver legislation enacted during the 111th Congress. Fortunately,
on May 5, 2010, the President signed into law P.L. 111-163, the
``Caregivers and Veterans Omnibus Health Services Act.'' This
legislation created an innovative new caregiver program to be
administered by the Department of Veterans Affairs (VA). The law called
for the VA to begin implementation of this important new program within
270 days of enactment of the bill. This placed the deadline for
implementation of this legislation in February of this year.
Unfortunately, the VA was very slow to accomplish that task.
As you know, the VA republished its Interim Final Rule on May 5,
2011, regarding the implementation of the caregiver provisions of P.L.
111-163. PVA expressed concerns with four areas of the caregiver
program as outlined by the VA's rules. They include: veterans' with
severe illnesses excluded from eligibility; the caregiver stipend; the
revocation of primary family caregiver status; and, the report on
expansion of family caregiver assistance. Additionally, we have
expressed concern in previous comments for the record with the
projected funding needs to implement the caregiver program and continue
to maintain it through at least FY 2015, as originally envisioned by
the legislation. We will explain each of these issues individually.
Veterans' With Severe Illnesses Not Considered Eligible
PVA has serious concerns that veterans who have incurred a severe
illness as a result of their service are excluded from consideration as
eligible for this program. This is the number one complaint that we
have received from our members who are eligible under the Post-9/11
criteria for this program. PVA's membership includes veterans with
spinal cord injury or dysfunction (disease). A spinal cord disease is
no less catastrophic than a spinal cord injury. It is a fact that
veterans who have been diagnosed with Amyotrophic Lateral Sclerosis
(ALS) and Multiple Sclerosis (MS) will eventually experience a
catastrophic impact on their activities of daily living. And yet, these
individuals who may be in greater need of caregiver services than any
other population of injured veterans have no avenue for support through
the new caregiver program.
Unfortunately, the VA's interpretation of the law excludes
consideration of veterans with severe illness. However, the legislation
was clearly intended to support populations of veterans that have
experienced a catastrophic injury or illness. In fact, Congressman
Michael Michaud (D-ME), then Chairman of the House Veterans' Affairs
Subcommittee on Health, commented when introducing similar caregiver
legislation, ``the bill would establish a caregiver program to help
family and non-family members who provide care for disabled, ill, or
injured veterans.'' Additionally, the Secretary of Veterans Affairs,
Eric Shinseki, emphasized during the roll-out of the new caregiver
program that ``caregivers are critical partners with VA in the recovery
and comfort of ill and injured veterans.'' Meanwhile, the VA has
interpreted the language of the law very narrowly ensuring that
veterans dealing with catastrophic illnesses will be unable to
participate in the program. This is simply unacceptable.
We have been told that the VA believes it needs clarifying
legislation in order to make this change to the program. If this is in
fact true, then the Subcommittee must move immediately to consider
legislation to correct this inconsistency in the implementation of the
program in order to ensure that caregiver assistance is available for
veterans who have experienced either injury or illness.
Caregiver Stipend
With regards to the caregiver stipend, the interim final rule
states that the caregiver stipend amount will be determined by the
eligible veteran's level of dependency based on the degree to which the
eligible veteran is unable to perform one or more activities of daily
living (ADL), or the degree to which the veteran is in need of
supervision or protection based on symptoms of residuals of
neurological or other impairment or injury.
The rule also states that the 14 ADLs and needs that are listed in
the Eligible Veterans and Servicemembers section will each be given a
clinical rating from zero to four, with zero representing no caregiver
assistance needed in that area by the veteran, and four meaning the
veteran is in need of total assistance with regard to that specific ADL
or need.
PVA is concerned that in the current calculation for caregiver
stipends, personal care services are not taken into consideration. It
is often the case that the very injuries that necessitate a caregiver
also result in the veteran not being able to perform personal functions
that are also necessary to ensure his or her health and safety, but are
not direct medical activities. As a result, the caregiver provides
``personal care services'' such as financial management or weekly
shopping that occupies a significant amount of his or her time and
energy.
In the rule, VA defines personal care services as ``care or
assistance of another person necessary in order to support the eligible
veterans health and well-being, and perform personal functions required
in everyday living ensuring the eligible veteran remains safe from
hazards or dangers incident to his or her daily environment.'' While
this definition may capture some of the caregiver services outlined in
the definition for ADLs, there are many daily responsibilities
involving personal care that are not included, and will therefore not
be included in the Primary family caregiver stipend. If the stipend is
to be an accurate reflection of the eligible veteran's level of
dependency and an acknowledgement of the sacrifices that Primary family
caregiver make to care for seriously injured veterans, personal care
services must be taken into consideration in the stipend calculation.
Revocation of Primary Family Caregiver Status
The interim final rule allows for up to 30 days of continuing
caregiver benefits after a veteran revokes the status of a Primary
family caregiver. PVA understands that the purpose of this safeguard is
to determine if remediation is possible, and to allow time for the
revoked caregiver to find additional health care coverage if necessary.
It is for similar reasons that PVA believes that guidelines should also
be put in place that requires the caregiver to provide the veteran with
notice should he or she choose to revoke their caregiver status. By
designating a specific amount of time that is required for caregivers
to continue their responsibilities after notice of revocation, with the
exception of caregiver abuse or negligence, the VA gives the veteran
time to arrange for replacement care as the veteran will need time to
identify a new primary caregiver, make arrangements with the secondary
caregiver if necessary, and complete a new VA caregiver application.
Report on Expansion of Family Caregiver Assistance
Perhaps the most important provision in P.L. 111-163 for PVA is the
reporting requirements outlined in Sec. 1720G(d). PVA cannot
overemphasize the importance of this provision. Specifically, the law
states,
``Not later than 2 years after the date described in subsection
(a)(3)(A), the Secretary shall submit to the Committee on
Veterans' Affairs of the Senate and the Committee on Veterans'
Affairs of the House of Representatives a report on the
feasibility and advisability of expanding the provision of
assistance under section 1720G(a) of title 38, United States
Code, as added by subsection (a)(1), to family caregivers of
veterans who have a serious injury incurred or aggravated in
the line of duty in the active military, naval, or air service
before September 11, 2001.''
PVA was disappointed that veterans who became injured or ill prior
to September 11, 2001, were excluded from the comprehensive caregiver
support programs. The fact is, PVA's members--veterans with spinal cord
injury or dysfunction--would benefit from this program more than any
other population of veterans. And yet, the majority of those veterans
are excluded by the arbitrary date of September 11, 2001, from the
comprehensive caregiver program. No reasonable justification (other
than cost considerations) can be provided for why pre-9/11 veterans
with a service-connected injury or illness should be excluded from the
comprehensive caregiver program. Catastrophically disabled veterans
needs are not different simply because they may have been injured prior
to the selected date.
With regards to the interim final rule, PVA is particularly
concerned that the VA offered no reference to this reporting
requirement in its proposed rules. We believe that given the
opportunity, the VA may simply choose to ignore this requirement so as
not to draw attention to an obvious deficiency in the caregiver program
that it cannot or will not be able to implement. The VA must ensure
that it fulfills this reporting requirement as it is an integral part
of the implementation of the caregiver program. This critical report
will pave the way to access to much-needed caregiver assistance for
many more catastrophically disabled veterans who are currently being
denied eligibility simply because of the arbitrary date assigned to
this benefit by Congress.
Lastly, PVA remains concerned about the VA's lack of commitment in
its FY 2012 budget request and FY 2013 advance appropriation estimate
for the funding necessary to fully implement this program. While the
Administration claims to have provided an additional $208 million for
implementation of P.L. 111-163, it is not clear where that additional
funding is included in the FY 2012 Medical Care budget request. Our
analysis suggests that for FY 2012, the VA actually requested
approximately $65.9 million for the implementation of the caregiver
provisions of P.L. 111-163 and an additional $70.6 million for FY 2013.
While we appreciate the fact that the Military Construction and
Veterans' Affairs appropriations bills approved by the full House and
currently being considered in the Senate purportedly address this
funding need, we believe insufficient funding has been provided to
fully implement this program. With this in mind, PVA, along with the
co-authors of The Independent Budget--AMVETS, Disabled American
Veterans, and Veterans of Foreign Wars--recommended approximately $385
million to fund the provisions of P.L. 111-163 in FY 2012.
PVA would like to thank this Subcommittee for the opportunity to
express our views relating to the implementation of the VA's new
caregiver program. We hope that the Subcommittee and Congress will take
an active role to ensure that the VA is actually implementing the
provisions of P.L. 111-163 as intended. Failure to comply with the
intent of Congress is simply not an option in this case. The most
severely disabled veterans and their families are depending on the VA
to get it right. We look forward to working with the Subcommittee as it
continues addressing these issues. We will gladly respond to any
questions. Thank you.
Statement for Wounded Warrior Project
Chairman Buerkle, Ranking Member Michaud, and Members of the
Subcommittee,
Wounded Warrior Project (WWP) applauds this Committee's ongoing
oversight of the Department of Veterans Affairs' (VA) implementation of
the comprehensive caregiver assistance program. This Committee's
vigilance and leadership have been critical to the important progress
made in moving the program from what was, initially, a flawed
implementation plan to a reality that is already making a difference in
the lives of families who have endured so much.
We trust this hearing will underscore that--even as VA has made
significant improvement to the implementation plan and great strides in
rolling out the program--more work must be done, particularly in
refining the Interim Final Regulation (IFR) published on May 5, 2011.
VA's adoption of WWP recommendations, submitted as comments on that
regulation, would help bridge remaining gaps between the law's promise
and regulatory-barriers many families still face.
In our view, the following comments offer the Department a road map
for achieving in full the goal Congress set in enacting a historic
caregiver-assistance law. WWP is pleased to provide this Committee with
these comments as part of our statement for the record:
1. Eligibility issues:
a. Under the IFR, warriors with certain serious mental health
conditions would likely be deemed ``ineligible'' for caregiver-
assistance. Accordingly, new Section 71.15, which identifies
reasons that might create a need for supervision or protection,
should be expanded to include pertinent symptoms of PTSD,
anxiety and depression.
The caregiver law provides that an eligible veteran is one who has
a serious injury, and it specifies that that term includes
``psychological trauma, or other mental disorder.'' The IFR identifies
possible bases for establishing a need for caregiver assistance. Among
those is that a wounded warrior requires supervision and protection
based on symptoms or residuals of neurological or other impairment or
injury. The IFR identifies seven different circumstances that might
require supervision or protection, but the Department specifically
welcomes additional suggestions on these circumstances. WWP agrees that
additional criteria are needed. The seven factors identified in the IFR
do address very relevant considerations. Nevertheless, we do not
believe the factors are sufficiently comprehensive, particularly with
respect to widely prevalent mental health conditions that in some
circumstances dictate a need for caregiving assistance.
For example, in the case of a veteran with PTSD, ``need for
supervision or protection'' could conceivably be established under the
IFR based on its inclusion of such symptoms as difficulty with sleep
regulation and inability to moderate agitation. However, a veteran with
PTSD marked by other severe symptoms (such as significant avoidant
behaviors) may need a caregiver's supervision and protection, but would
likely not qualify under these IFR criteria. In addition, a veteran
with significant anxiety and related fearfulness (such as fear of
leaving the home) could also require some degree of caregiver
assistance. As currently drafted, there is no single criterion or group
of criteria under Section 71.15 related to supervision or protection
that would address such anxiety symptoms. Similarly, it is not clear
that symptoms of depression are necessarily covered under that Section.
(The reference to ``self regulation'' is at best ambiguous because it
is described in terms that suggest it applies only to being able to
regulate an agitated or aggressive state. And while very severe
depression could involve suicidality and thus be covered under the
``safety risk'' criterion, an individual with depression may pose no
safety risk and still need considerable assistance. PTSD, anxiety and
depression are not only widely prevalent among OEF/OIF veterans, but
can certainly dictate a need for caregiving assistance in the nature of
supervision and protection. Given that PTSD and other mental disorders
are signature wounds of this war, and specifically included in the
statute, it would be unreasonable to fail to take account of common,
severe symptoms of those conditions. Accordingly, the criteria in
Section 71.15 should be revised and expanded.
WWP recognizes that the IFR establishes a criterion under which a
need for caregiving can be based on a mental disorder that has been
scored under a Global Assessment Functioning (GAF) test at 30 or less
continuously during a 90-day period. A GAF score of 21-30 is defined as
``behavior is considerably influenced by delusions or hallucinations OR
serious impairment, in communication or judgment (e.g., sometimes
incoherent, acts grossly inappropriately, suicidal preoccupation) OR
inability to function in almost all areas (e.g., stays in bed all day,
no job, home, or friends).'' Requiring a GAF score of 30 or less sets
an unreasonably restrictive eligibility bar, particularly given the
observations set forth above regarding situations in which individuals
with PTSD, anxiety and depression likely would not be deemed to need
caregiver assistance under the Section 71.15 criteria on supervision or
protection.
In setting a GAF ``line'' that is too restrictive and omitting
pertinent behavioral health criteria in Section 71.15 relating to
supervision or protection, the IFR will fail to cover veterans who
should be deemed eligible based on a real need for caregiver
assistance. As such, the IFR creates what amounts to serious disparity.
Consider that the IFR, on the one hand, implicitly recognizes that a
veteran with a physical injury may be ``eligible'' based on a
relatively limited need for assistance with activities of daily living.
(For example, a veteran may need relatively limited assistance daily
based on an inability to dress himself; yet the IFR would appropriately
provide for caregiver-support to the veteran's caregiver. Similarly, a
veteran who experienced moderate traumatic brain injury, manifested
only in limited difficulty with planning and organization, might need
only limited assistance such as with maintaining a medication regimen,
but caregiver support could again be authorized under the IFR.) But a
veteran with anxiety, for example, would have to be almost totally
disabled under the GAF-criterion--and likely need full-time
assistance--to be deemed eligible. This surely unintended disparity
between IFR eligibility standards applicable to a physical injury and
those applicable to a common mental health condition is fundamentally
inconsistent with a law that clearly recognized that both mental
disorders and physical injuries can render veterans in need of
caregiver assistance. It is also inconsistent with the principle of
``mental health parity'' which is firmly embedded in Federal law. \1\
Such disparity should be excised from the regulation.
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\1\ See, e.g., Paul Wellstone and Pete Domenici Mental Health
Parity and Addiction Equity Act of 2008, Public Law 110-343.
---------------------------------------------------------------------------
b. The ``GAF eligibility provision'' is not only unduly
restrictive, it is an arbitrary standard that, contrary to law,
has become the exclusive criterion under the IFR for
determining eligibility in the case of a mental health
condition.
As discussed above, the ``GAF eligibility provision'' is unduly
restrictive. Implicitly, the Department's position is that the only
circumstances under which a mental health condition would require
another's assistance is where mental impairment is so profound as to
manifest in (1) delusions or hallucinations; (2) suicidal
preoccupation; (3) gross inappropriateness; or (4) bedridden status.
Given how disabling mental illness can be, such a view fails to account
for the fact that individuals with less severe symptoms may also need
another's daily assistance, albeit not necessarily round-the-clock or
full time care. In attempting to explain this provision, the Department
states that a ``GAF scores in the 21-30 range is the minimum impairment
standard that VA will require to consider a mental health diagnosis a
serious injury.'' \2\ It states further that:
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\2\ Federal Register, 76, no. 87 (May 5, 2011): 26150.
``At this assessed level of impairment, the supervision or
protection of a caregiver is essential to the individual. An
individual who has been assessed as having a psychological
trauma or mental disorder scored at 30 GAF or less generally
requires a higher level of care that would provide constant
supervision.'' \3\
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\3\ Id. (emphasis added).
The underscored language above surely makes the point. Nothing in
the law suggests that a need for caregiver-assistance must be constant.
To the contrary, Congress made it clear that the extent of personal
care services needed by eligible veterans would vary substantially and
directed the Secretary to provide Primary caregivers a stipend that
``shall be determined . . . based upon the amount and degree of
personal care services provided.'' \4\ The IFR provisions addressing
the stipend clearly provide that a Primary caregiver of a veteran who
is determined to need as little as 10 hours of caregiver assistance
weekly would still be entitled to receive comprehensive caregiver
supports. Setting a GAF score at a level that requires ``constant
supervision of the veteran'' is contrary to the law that directs the
Secretary to provide caregivers support tied to the duration of needed
caregiving. In short, this standard is contrary to law.
---------------------------------------------------------------------------
\4\ 38 U.S.C. Sec. 1720G(a)(3)(C)(i).
---------------------------------------------------------------------------
Beyond the question whether it is lawful to set a GAF-score ``bar''
at 21-30 rather than a higher level, the IFR raises the more basic
question: what is the foundation for establishing any GAF score
criterion? The VA states that the GAF-eligibility provision, Section
71.20(c)(3), is authorized by 38 U.S.C. Sec. 1720G(a)(2)(C)(iii), under
which the Secretary may establish additional circumstances that create
a need of personal care services other than the specific criteria
identified in the law. In WWP's view, relying on a tool used to
subjectively rate social, occupational, and psychological functioning
is an extraordinarily poor proxy for assessing a need for caregiver
assistance. However, the GAF provision is not simply a too-restrictive,
arbitrary standard. Given that the VA has established with the GAF
provision a separate eligibility criterion applicable only to
``psychological trauma or a mental disorder,'' Section 71.20(c)(3)
provides the exclusive eligibility criterion for a veteran needing
personal care services because of a mental health condition. As such,
Section 71.20(c)(3) has not only established a much higher eligibility
threshold for a mental health condition than for any other disorder, it
effectively renders meaningless the law's ``need for supervision or
protection'' language in the case of a veteran with PTSD or other
mental health condition. Instead, the regulation sets a very specific
test applicable to veterans with a mental disorder, such that--even if
that veteran's condition is so severe that it creates a need for
supervision or protection--one must assume that the veteran would be
deemed not to meet the IFR's eligibility requirements.
The VA's explanation of this provision belies the notion that GAF-
criterion is simply ``an alternative'' avenue of eligibility. As the VA
clearly explains ``GAF scores in the 21-30 range is the minimum
impairment standard that VA will require to consider a mental health
diagnosis a serious injury.'' \5\ The VA has established a double
standard here. In interpreting the statutory language ``an eligible
veteran is any individual who . . . has a serious injury (including
traumatic brain injury, psychological trauma, or other mental
disorder),'' \6\ the VA explains that a mental health condition is not
``serious'' unless it results in functional impairment that requires
``constant supervision.'' Yet for ANY other injury, including traumatic
brain injury (which may manifest itself exclusively in behavioral
manifestations little different from certain mental health conditions),
the IFR defines ``serious injury'' differently: ``any injury . . . that
renders the veteran or servicemember in need of personal care
services.'' \7\ Under this definition, a veteran suffering from
traumatic brain injury could receive as little as 10 hours per week of
caregiver assistance. Setting disparate standards based solely on
diagnosis for determining whether an individual is in need of
supervision or protection because impaired behavioral-health
functioning cannot be squared with a law that draws no distinction
among types of injury, and provides a specific, clearly-applicable
criterion in law for determining need for personal care services. WWP
submits that including Section 71.20(c)(3) in a final regulation would
be contrary to law, and strongly urges that it be deleted in its
entirety.
---------------------------------------------------------------------------
\5\ Federal Register (May 5, 2011): 26150
\6\ 38 U.S.C. Sec. 1720G(a)(2)(B) (2010).
\7\ 38 CFR Sec. 71.15 (2011).
---------------------------------------------------------------------------
c. Contrary to law, the IFR draws so tight a link between injury
and need for personal care services that veterans whose
injuries (only) ``lead to'' the need for caregiver support will
be rendered ineligible.
The VA explains that it interprets the caregiver law to require ``a
causal relationship'' between a veteran's serious injury and a need for
personal care services. While WWP does not suggest that the VA's
interpretation of the statute is unreasonable in principle, the IFR
draws too fine a line -- particularly in the absence of specific
statutory language requiring any causal connection\8\--in defining
serious injury to mean an injury that ``renders'' the individual in
need of personal care services.\9\
---------------------------------------------------------------------------
\8\ The Department acknowledges that the law imposes no such test.
See Federal Register (May 5, 2011): 26150.
\9\ 38 CFR Sec. 71.15 (2011).
---------------------------------------------------------------------------
To say, in effect, that the injury must have caused the need for
caregiver-assistance is at best to create ambiguity, and potentially to
render ineligible a veteran under circumstances where a condition
secondary to his or her injury causes the need for personal care
services. Consider the case of a veteran who sustained multiple shell
fragment wounds in Iraq. While those injuries were not severely
disabling and did not create a need for sustained caregiver assistance,
the veteran after separation from service underwent further surgery for
removal of shell fragments, and as a result of a mishap in surgery
suffered loss of oxygen and now requires extensive personal care
services. One can also readily imagine the instance of a warrior who
lost a leg in Afghanistan, and subsequently (after separation from
service) sustains a severe traumatic brain injury in a bad fall due to
loss of balance.
To focus narrowly and exclusively on whether the initial injury
``renders'' the veteran in need of personal care services is to misread
both the language and the purpose of the caregiver law. If it is to
conform to law, the final regulation must clarify that a secondary
condition resulting from that initial injury can provide an equally
sound basis for establishing a causal link to the need for caregiver-
assistance. WWP urges that the final rule make clear that eligibility
extends to any serious condition that is ``related to, caused by, or
derived from'' an injury incurred or aggravated during service.
d. The IFR fails to articulate clearly the manner in which
``clinical eligibility'' will be determined and does not ensure
that the caregiver's perspective is taken into account.
As drafted, the IFR is singularly vague regarding how the VA is to
arrive at a judgment that a particular wounded veteran requires
caregiver-assistance. The VA should remedy this ambiguity.
The IFR states that ``need of personal care services [will be] . .
. based on . . . [specified] clinical criteria.'' \10\ It provides that
``upon receiving [the required application for caregiver assistance] VA
will perform the clinical evaluations required by this section.'' \11\
The IFR further states that ``VA will clinically rate the eligible
veteran's need for supervision or protection . . . using the seven
impairments listed in . . . sec. 71.15.'' \12\ New Section 71.25(f)--
relating to approval and designation of primary and secondary family
caregivers is the only provision of the regulation that speaks to the
process by which at least certain clinical judgments are to be made.
The provision is vague, at best:
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\10\ 38 CFR Sec. 71.20(c) (2011).
\11\ 38 CFR Sec. 71.25(a)(2) (2011).
\12\ 38 CFR Sec. 71.40(c)(4)(ii) (2011).
If the eligible veteran and at least one applicant meet the
requirements of this part, VA will approve the application and
designate Primary and/or Secondary family caregivers, as
appropriate. This approval and designation will be a clinical
determination authorized by the eligible veteran's primary care
team.\13\
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\13\ 38 CFR Sec. 17.25(f) (2011).
One infers that this language means that the primary care team (as
opposed to a single non-physician, for example) is to perform the
clinical evaluation. An interdisciplinary evaluation is critically
important, but the IFR is certainly not clear on that point.
WWP recently conducted a survey of caregivers to understand the
experience of families who had applied for comprehensive-assistance
under the caregiver law during the 7-week period following the initial-
application date. Among the findings, the survey responses suggest that
there is variability from facility to facility as to who determines a
veteran's need for caregiver assistance, as well as an apparent failure
to communicate to caregivers how that determination is made. Asked
their understanding of who determines a veteran's need for caregiver-
assistance, more than one in five respondents expressed the
understanding that it was the primary care physician; one in four
responded that it was the clinical team; while more than four in ten
expressed uncertainty. Clarifying who makes the determination that a
veteran needs caregiver-assistance is only a first step, however. The
regulation states that VA is to ``clinically rate'' the veteran, but
does not define that term or specify how such clinical rating is to be
conducted. In considering the determinations that must be made
regarding whether, and the extent to which, impairments result in a
need for supervision or protection, clinical judgment must take account
of how the veteran functions in his or her home and community, not
simply how the veteran appears in a medical facility's examination
room. Such judgment cannot, for example, be reliably based on prior VA
medical records, and must necessarily rely heavily on interviewing the
caregiver and the veteran. But as one caregiver's experience (reported
to WWP through our recent survey) indicates, the VA's lack of guidance
on the importance of obtaining a full understanding of the veteran's
limitations and needs (to include obtaining the caregiver's
perspective) can result in an inaccurate assessment:
``My husband was interviewed by his VA physician, but I was not
allowed to go in and assist him and help him remember things
and help give an accurate picture of his functioning and
health. His physician had only seen him a couple of times, we
were told this was the reason he was going in for an interview/
assessment. The assessment was supposed to provide the
understanding of my warrior's needs. Since I was not there, and
my warrior does not recall the entire interview, I do not know
if the doctor really got a good understanding of the
situation.''
WWP urges that the regulation make clear that the various clinical
determinations implicit in the IFR are to be made by an
interdisciplinary clinical team, and that the team must interview both
the caregiver and veteran to gain an understanding of the extent and
nature of the veteran's need for personal care services. In those
instances in which a need for caregiving is based on a need for
supervision and protection, VA should require use of the
Neuropsychiatric Inventory (NPI) (or similar tool). The NPI, which VA
cited as a source for its scoring methodology, would be an apt tool for
interviewing a caregiver because it is structured to gain information
on the frequency and severity of impairment across ten behavioral
areas, as well as to assess caregiver distress. (Insight on the degree
of caregiver distress would also be a useful tool in determining
caregiver's need for education and training, supportive services, and
respite care.)
WWP recommends that the term ``clinical rating'' be defined to
address the above described concerns, to include identifying who makes
such determinations, the manner in which such determinations are made
(that is, that they are not to be based on inferences drawn from prior
medical or compensation records, must take account of extensive
interview with the caregiver, etc.), and the nature of the examinations
and home assessments that must be conducted.
The final regulation should clarify that a veteran with any service-
connected condition incurred or aggravated on or after 9/11 may
be an ``eligible veteran'' under the caregiver law.
The IFR essentially restates the statutory language in providing an
eligible veteran is ``an individual [who] . . . has a serious injury,
including traumatic brain injury, psychological trauma, or other mental
disorder[.]'' \14\ That phrasing leaves an important issue unresolved.
The final rule should clarify that caregivers of veterans who incurred
a serious illness or disease in service on or after 9/11 will not be
excluded from the comprehensive assistance program.
---------------------------------------------------------------------------
\14\ 38 CFR Sec. 71.20(b) (2011)
---------------------------------------------------------------------------
While the statute does not define the term ``serious injury'', the
statutory language is instructive. Its key provision is ``serious
injury (including traumatic brain injury, psychological trauma, or
other mental disorder).'' \15\ The dictionary definition of ``injury''
encompasses any kind of suffering, which would include diseases. See
Webster's third new international dictionary 1164 (3d ed. 1976)
(defining ``injury'' to mean ``hurt, damage, or loss sustained.'');
random house unabridged dictionary 983 (2d ed. 1993) (defining
``injury'' as ``a particular form or instance of harm.''); Merriam
Webster collegiate dictionary (10th ed. 1996) (defining ``injury'' as
``hurt, damage, or loss sustained.''). Moreover, the use of the word
``including'' in Section 1720G(a)(2)(B) is not to be construed
narrowly, as providing an all inclusive list of qualifying
disabilities, but rather sets forth examples of the types of disabling
conditions that would constitute a ``serious injury'' under the
statute. See Federal Land Bank of St. Paul v. Bismarck Lumber Co., 314
U.S. 95, 100 (1941) (``the term `including' is not one of all-embracing
definition, but connotes simply an illustrative application of the
general principle.''). By including ``other mental disorder'' in
addition to those caused by ``psychological trauma,'' the statute
strongly suggests an intention to include not only disabling conditions
caused by external trauma, but also conditions that may have been
caused by an illness or disease process.\16\ While it seems clear that
the phrase ``serious injury'' cannot be read to mean only ``traumatic
injury,'' the inquiry does not end there.
---------------------------------------------------------------------------
\15\ 38 U.S.C. Sec. 1720G(a)(2)(B) (2010).
\16\ Psychological trauma'' is not itself a psychiatric diagnosis.
See Diagnostic and Statistical Manual of Mental Disorders, 4th.
Edition, American Psychiatric Association.
---------------------------------------------------------------------------
While the statute itself does not provide a more concrete
definition of the phrase ``seriously injured,'' that term has been
widely used by the Department of Defense (DoD) and Department of
Veterans Affairs (VA) in relation to benefits, care and services
provided to servicemembers and veterans of Operation Enduring Freedom
(OEF) and Operation Iraqi Freedom (OIF). DoD classifies casualties for
reporting purposes into one of the following seven casualty statuses:
Deceased, DUSTWUN (a temporary status), Missing, Very Seriously Ill or
Injured (VSI), Seriously Ill or Injured (SI), Incapacitating Illness or
Injury (III), and Not Seriously Injured (NSI).\17\ This DoD
classification system is used by both DoD and VA to provide and
coordinate care to servicemembers of OEF and OIF. For example, DoD uses
these classifications to determine eligibility for a servicemembers'
next of kin (NOK) to receive travel at government expense to aid the
servicemember's recovery through presence at their hospital
bedside.\18\ Both VA and DoD use this classification to qualify a
servicemember for the assignment of a Federal Recovery Care
Coordinator, the individuals tasked with ensuring seamless transition
from DoD to VA care.\19\ As a further example, VA uses this
classification to assign case managers to veterans of OEF and OIF in
order to ensure that their care is well coordinated.\20\
---------------------------------------------------------------------------
\17\ ``Military Personnel Casualty Matters, Policies, and
Procedures,'' Department of Defense Instructions 1300.18, September 18,
2000, p. 19, http://biotech.law.lsu.edu/blaw/dodd/corres/pdf2/
i130018p.pdf.
\18\ ``Military Personnel Casualty Matters, Policies, and
Procedures,'' Department of Defense Instructions 1300.18, September 18,
2000, p. 7, http://biotech.law.lsu.edu/blaw/dodd/corres/pdf2/
i130018p.pdf.
\19\ Memorandum from the Under Secretary of Defense for Personnel
and Readiness, June 10, 2009, http://www.health.mil/libraries/
HA_Policies_and_Guidelines/09-021.pdf.
\20\ VHA Handbook 1010.01, ``Transition Assistance and Case
Management of Operation Iraqi Freedom (OIF) and Operation Enduring
Freedom (OEF) veterans,'' May 31, 2007.
---------------------------------------------------------------------------
The legislative history of the Veterans and Caregivers Omnibus
Health Services Act, P.L. 111-163, makes clear that Congress intended
for caregiver benefits under the act to extend to those servicemembers
of OEF and OIF who are classified as ``seriously ill or injured'' or
``very seriously ill or injured.'' The Joint Explanatory Statement that
accompanied the legislation expressly states:
The Compromise Agreement also includes an authorization for
appropriations that is below the estimate furnished by the
Congressional Budget Office. The lower authorization level is
based on information contained in a publication (Economic
Impact on Caregivers of the Seriously Wounded, Ill, and
Injured, April 2009) of the Center for Naval Analyses (CNA).
This study estimated that, annually, 720 post-September 11,
2001 veterans require comprehensive caregiver services. The
Compromise Agreement limits the caregiver program only to
``seriously injured or very seriously injured'' veterans who
were injured or aggravated an injury in the line of duty on or
after September 11, 2001.\21\
\21\ Joint Explanatory Statement Submitted by Senator Akaka,
Chairman of the Senate Committee on Veterans' Affairs, Congressional
Record, April 22, 2010, S2567, http://www.gpo.gov/fdsys/pkg/CREC-2010-
04-22/pdf/CREC-2010-04-22-pt1-PgS2566.pdf#page=1.
The referenced study conducted by the Center for Naval Analyses
(CAN), entitled ``Economic Impact on Caregivers of the Seriously
Wounded, Ill, and Injured,'' expressly based its estimates of the need
for caregiver services on the DoD classifications of ``Very Seriously
Injured and Ill'' and ``Seriously Injured and Ill.'' Thus the study
---------------------------------------------------------------------------
states:
We estimate that the average annual incidence of seriously WII
servicemembers needing a caregiver is about 720. This estimate
is based on the number of ``very seriously ill or injured'' or
'seriously ill or injured' (VSI/SI) servicemembers. If we
restrict this to just VSI cases, the average annual number is
170.\22\
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\22\ ``Economic Impact on Caregivers of the Seriously Wounded, Ill,
and Injured,'' CNA Analysis and Solutions, April 2009, p. 3, http://
www.cna.org/documents/D0019966.A2.pdf (emphasis added).
While the statute uses a truncated reference to the DoD
classification system, ``seriously injured,'' rather than the full
reference to ``seriously injured and ill,'' this should not be
interpreted as an intent to further limit eligibility by excluding
servicemembers whose need for caregiver services is based on illness.
It is common for the DoD classifications of ``Very Seriously Injured
and Ill'' and 'Seriously Injured and Ill'' to be truncated when
referenced to ``very seriously injured'' and ``seriously injured.'' For
example, in a 2005 memorandum between the Department of Defense and
Department of Veterans Affairs with the express subject of ``Expediting
Veterans Benefits to Members with Serious Injuries and Illnesses,'' the
body of the memo truncates the reference by deleting the word ``ill''
---------------------------------------------------------------------------
as follows:
The Department of Veterans Affairs (VA) and the Department of
Defense (DoD) identified an initiative to expedite data
exchange between the DoD and the VA for 'seriously injured'
members, and those members entering the Physical Evaluation
Board Process.\23\
---------------------------------------------------------------------------
\23\ Memorandum from the Under Secretary of Defense for Personnel
and Readiness, September 27, 2005, http://www.health.mil/libraries/
HA_Policies_and_Guidelines/05-018.pdf.
Similarly, in a 2008 report the Department of Veterans Affairs
Office of the Inspector General noted that the truncated reference to
``seriously injured'' or ``seriously disabled'' was meant to refer to
---------------------------------------------------------------------------
the traditional DoD classification codes that include illness, stating:
VBA defines seriously disabled veterans as servicemembers who
definitely or possibly will be discharged from military service
because of an injury or illness and all veterans with DoD
classification codes of very seriously injured, seriously
injured, or a special category involving an amputation.\24\
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\24\ ``Audit of Veterans Benefits Administration Transition
Assistance for Operations Enduring and Iraqi Freedom Servicemembers and
Veterans,'' Department of Veterans Affairs Office of Inspector General,
July 17, 2008, pg. i, http://www.va.gov/oig/52/reports/2008/VAOIG-06-
03552-169.pdf (emphasis added).
Despite the use of the common, truncated reference to DoD's
classification of ``Seriously Injured and Ill, Congress clearly
intended the legislation to cover those individuals identified in the
(CNA) study as in need of caregiver services, estimated to be 720
families annually, and appropriated funding to cover the costs of
providing caregiver benefits to those families.
Finally, the caregiver law cannot be read in isolation and without
regard to the carefully woven system of benefits codified in title 38
of the U.S. Code, which it amends. Importantly, with a single readily
distinguishable exception,\25\ the entire VA benefit system is
structured so as not to differentiate between injury and illness as a
basis for eligibility. Thus, veterans are equally eligible for monetary
compensation for any injury or illness that is incurred coincident with
service or is aggravated by service,\26\ entitlement to higher levels
of ``special monthly compensation'' may be awarded based on
disabilities resulting from either an injury or disease process,\27\
and veterans who are determined catastrophically disabled due to an
injury or disease receive a higher priority access to VA health
care.\28\ The caregiver provisions should be interpreted in harmony
with the general principle established in the statutory scheme, that
veterans with a qualifying disability are entitled to benefits whether
such disability resulted from an injury or an illness. See Exxon Mobil
Corp. v. Allapattah Services, Inc., 545 U.S. 546, 559 (2005) (``In
order to determine the scope of [a statutory provision] . . . then, we
must examine the statute's text in light of context, structure, and
related statutory provisions''); United States v. Gomez, 490 U.S. 858,
864 (1989) (``We interpret the Federal Magistrates Act in light of its
structure and purpose.'').
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\25\ 38 U.S.C. Sec. 1980A (2010).
\26\ 38 CFR Sec. 3.303(a) (2011).
\27\ 38 CFR Sec. 3.350(a)(3),(f)(4)(i) (2011).
\28\ 38 C.F.R Sec. 17.36(e) (2011).
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2. The Stipend
a. In establishing a schedule for caregiver stipends, the IFR
unreasonably applies an untested, flawed ``scoring''
methodology that dramatically underestimates the number of
hours of caregiving needed by an individual who requires
supervision or protection and is inconsistent with law.
The caregiver law directs that the amount of the monthly personal
caregiver stipend is to be determined in accordance with a VA-
established schedule that is based on the amount and degree of personal
care services provided. The VA explains that in arriving at a stipend
amount it will determine the veteran's level of dependency by reference
to the degree to which the veteran in unable to perform activities of
daily living or the degree to which the veteran is in need of
supervision of protection based on symptoms or residuals of
neurological or other impairment or injury. The IFR methodology with
reference to the criterion, need for supervision and protection, fails
even to approximate the amount and degree of personal care services
many wounded warriors with traumatic brain injury and other behavioral
impairments need. In describing that methodology, the VA explains that
its ``scoring criteria'' are ``based on three widely accepted clinical
tools for measuring ADLs and functional dependence: The Katz Basic
Activities of Daily Living Scale, the UK Functional Independence
Measure and Functional Assessment Measure; and the Neuropsychiatric
Inventory.'' \29\ We note, in that regard, that at least one of those
tools, the Neuropsychiatric Inventory, is not, by its own description,
a tool for measuring functional dependence, but instead an assessment
tool to monitor change. The following case profiles demonstrate that,
regardless of the utility of those tools in other settings, the scoring
methodology itself has not been adequately tested, and must be revised.
---------------------------------------------------------------------------
\29\ Federal Register (May 5, 2011): 26150.
1. Veteran A returned from Iraq in 2008 and has been clinically
diagnosed with severe depression which began in service. He is able to
perform all activities of daily living, but is unable to work or
perform much in the way of gainful activity because of symptoms of
depression which include utter lack of energy, difficulty in even
getting out of bed or concentrating on tasks, and feelings of
hopelessness. Medications have not alleviated his now-chronic symptoms,
and his family members have maintained virtually full-time watch to
ensure that he does not attempt to harm himself. Under the current
scale, since a need for total assistance in any one domain is assigned
a rating of only ``4'', Veteran A is rated as a ``4'' for safety risk,
``4'' for self-regulation, and ``4'' for difficulty with planning and
organizing, for a total score of 12. Because the scoring criteria under
the IFR creates an irrebuttable presumption that a veteran with a score
of 12 or less requires 10 hours per week of caregiver assistance, this
veteran's primary caregiver, his wife, would receive a stipend for 10
hours of caregiving per week--or about $15 day--even though she is
effectively a full-time caregiver and thus unable to pursue employment
and earn any additional income.
2. Veteran B returned from Afghanistan where he sustained a severe
traumatic brain injury and other wounds as a result of an IED blast.
After a lengthy post-operative course during which he underwent
extensive rehabilitation, he walks with a limp but is able to perform
all activities of daily living. Despite his head injuries, he has no
cognitive deficit, seizures, memory problems, or difficulty with
planning and organizing. In fact, the single manifestation of his
injuries is that he experiences severe, erratic mood swings, and
unpredictably and often exhibits aggressive and even violent outbursts.
He is unable to control these behaviors, even with medication, and as a
result is unable to work. His wife accompanies him everywhere--serving
as a buffer to avoid incidents, driving him to frequent medical
appointments, and keeping him out of trouble. Under the IFR rating
scale, veteran B is rated as a 4 based on total inability to self-
regulate; as a result, his wife would receive the minimum stipend,
based on the methodology that ``the eligible veteran is presumed to
require 10 hours per week of caregiver assistance.'' Notwithstanding
that regulatory presumption, the fact is that his wife is his full-time
caregiver.
3. Veteran C sustained a moderate to severe traumatic brain injury
during his third tour in Iraq and suffers from severe chronic short-
term memory loss. While he is able to carry out all activities of daily
living, he is both very forgetful and easily distracted. As a result,
he is unable to work and spends much of his time at home. Even after a
lengthy period of rehabilitation, he manifests behaviors such as
forgetting to turn off appliances or the stove that have frightened his
family. His mother felt the need to quit her job and stay home with him
to prevent any mishap. Under the current scale, Veteran C is rated as 4
for difficulty with planning and organizing, a 4 for safety risks, and
a 4 for difficulty with recent memory, for a score of 12. Under the IFR
rating criteria, Veteran C's mother, his primary caregiver, would
receive a stipend that is based on the assumption that she provides
only 10 hours of caregiving assistance per week; in fact she spends
approximately that much time in a caregiving capacity daily.
These hypotheticals underscore the fundamental flaw in the IFR
scoring methodology applicable to caregivers who provide protection or
supervision. If an aggregated scoring methodology is to be employed, it
must recognize that deficits in a single domain--such as being a safety
risk or being unable to regulate severe mood swings, for example--may
create a need for total assistance and should be sufficient to result
in a determination that the veteran requires full-time caregiving. Yet
this model fails to recognize that, unlike a methodology that gauges
caregiving need of an individual with limitations in activities of
daily living, a need for full-time caregiving cannot necessarily be
determined by an aggregated-scoring tool.
WWP's recent survey of caregivers demonstrates the above-cited
concerns, as illustrated by a respondent's comments:
I was told that my husband scored in the low Tier level I, with
an `11.' This only allows 10 hrs a week, approximately $426 a
month. I don't agree with this because my husband needs
continuous supervision due to his TBI, PTSD, Mental Health and
also sometimes 2-3 days a week requires bed rest due to
physical pain. So 10 hrs a week is like about 1.42 hrs a day. I
have to help him remember to take meds 3 x times daily, assist
with cooking, driving, medical appointment; and just overall
supervision for his safety. Ten hours a week is nowhere near
the time I spend caring for him.
Clearly, as the above examples illustrate, the scoring methodology
is flawed as it relates to assessing the extent and degree of personal
services required by veterans for whom caregiving-assistance is based
on a need for supervision or protection. But the criteria suffer from a
more fundamental flaw. Under the law, ``the amount of the . . . stipend
. . . shall be determined in accordance with a schedule established by
the Secretary that specifies stipends based upon the amount and degree
of personal care services provided.'' \30\ The law defines the phrase
``personal care services'' in pertinent part to mean ``services that
provide the veteran . . . [a]ssistance with one or more independent
activities of daily living.'' \31\ Those IADL's assess the relative
ability of an individual to carry out specified activities
independently, to include use the telephone, shop, prepare meals, keep
house, do laundry, travel, take medications correctly, and handle
finances.\32\ The law clearly requires the VA at least to include these
criteria in determining the amount and degree of personal care services
a caregiver is providing, as it relates to determining a stipend
amount. The IFR does not do so, and, accordingly, is not consistent
with law.
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\30\ 38 U.S.C. Sec. 1720G(a)(3)(C)(i) (2010).
\31\ 38 U.S.C. Sec. 1720G(d)(4) (2010).
\32\ Lawton MP, Brody EM. Assessment of older people: self-
maintaining and instrumental activities of daily living. Gerontologist
1969; 9(3):179-186; http://www.unmc.edu/media/intmed/geriatrics/nebgec/
pdf/frailelderlyjuly09/toolkits/timmactivitiesdailyliving.pdf.
---------------------------------------------------------------------------
For the reasons set forth above, Section 71.40(c)(4) must be
revised.
b. While establishing a cap of 40 hours/week for a caregiver stipend,
the IFR does not address how caregiving-needs exceeding 40
hours would be
covered.
The IFR states that an eligible veteran with a score of ``21 or
higher . . . is presumed to require 40 hours per week of Caregiver
assistance.'' \33\ But it fails to address circumstances under which
caregiving-needs exceed that limit. WWP understands that the intent of
this provision is to cap stipend amounts at that level. The underlying
rationale, as WWP understands it, is laudatory--to avoid having
caregivers work unreasonably long, strenuous hours and to give them
respite by meeting those additional needed caregiving hours through
home health agency services. That important policy should be
specifically articulated in the regulation. However, the policy must
also take account of the circumstances facing caregivers in rural and
other areas where home health services are not available (as well as
those instances in which agencies are not capable of providing the
required specialized care a wounded warrior needs). Given those
relatively frequent situations, WWP believes it would be unreasonable
to fail to address this situation. We urge that the VA revise the
regulation to afford caregivers a reasonable opportunity to rebut the
presumption that a veteran requires only 40 hours of caregiver
assistance a week, and, accordingly to enable a caregiver to receive a
stipend amount that encompasses and reasonably approximates the
additional number of caregiving hours that circumstances may require.
---------------------------------------------------------------------------
\33\ 38 CFR Sec. 71.40(c)(6)(4)(iv)(a) (2011).
---------------------------------------------------------------------------
c. Setting the stipend rate based only on the amount of services
provided is inconsistent with law.
In directing the Secretary to establish a schedule for determining
the amount of the monthly caregiver stipend, the statute provides the
VA must, to the extent practicable, ensure that the stipend amount ``is
not less than the monthly amount a commercial home health care entity
would pay an individual in the geographic area of the eligible veteran
to provide equivalent personal care services to the eligible veteran.''
\34\ Importantly, two different considerations must be built into the
development of that stipend schedule: ``the amount and degree of
personal care services provided.'' \35\ The VA's formulation, however,
interprets the statute in a manner that effectively ignores the term
``degree.'' This interpretation cannot stand.
---------------------------------------------------------------------------
\34\ 38 U.S.C. Sec. 1720G(a)(3)(C)(ii) (2010).
\35\ Id. at Sec. 1720G(a)(3)(C)(i) (emphasis added).
---------------------------------------------------------------------------
The VA explains that ``the direct stipend payment is calculated
based on the BLS wage rate for a Home Health Aide using the 75th
percentile of the hourly wage rate in the geographic area of residence
of the eligible veteran.'' \36\ The Bureau of Labor Statistics
describes a home health aide as one who provides ``routine
individualized health care such as changing bandages and dressing
wounds, and applying topical medications to the elderly, convalescents,
or persons with disabilities at the patient's home or in a care
facility. Monitor or report changes in health status. May also provide
personal care such as bathing, dressing, and grooming of patient.''
\37\ WWP submits the caregiving needs of many within the population of
young severely wounded veterans are far more extensive than the kind of
routine care described by BLS, and often cannot be met by a home health
aide. In describing her role as a caregiver, one explained, ``I am my
husband's accountant; occupational therapist; physical therapist;
driver; mental health counselor; and life coach.'' \38\ Further, during
its consideration of caregiver legislation, Congress heard testimony
indicating that home health aides often lack the specialized training
or capability to meet the needs of profoundly disabled veterans.\39\
---------------------------------------------------------------------------
\36\ Federal Register (May 5, 2011): 26154.
\37\ U.S. Department of Labor, Bureau of Labor Statistics,
Occupational Employment and Wages, May 2010, 31-1011, Home Health
Aides, http://www.bls.gov/oes/current/oes311011.htm.
\38\ Wounded Warrior Project Statement for the Record, ``Oversight
Hearing: TBI--Progress in Treating the Signature Wound of the Current
Conflicts,'' Committee on Veterans Affairs, U.S. Senate, May 5, 2010.
\39\ See testimony of Anna Frese, ``Meeting the Needs of Family
Caregivers of Veterans,'' Committee on Veterans Affairs, U.S. House of
Representatives, Hrg. No. 111-26, 111th Cong. 1st Sess., June 4, 2009.
---------------------------------------------------------------------------
The VA states that ``[w]e determined that the 75th percentile most
accurately reflects the national hourly wage rate for the competencies
to be performed.'' \40\ WWP questions the basis for that determination.
Family caregivers of more severely wounded veterans seldom provide
simply home-health care, but typically assist (and often substitute
for) the veteran in carrying out a range of other demanding
responsibilities, to include financial management and running a
household. The VA states that ``[t]here is a large standard deviation
on wage rates for home health aides depending on their experience and
education as well as the economic factors in the geographic area
(mainly supply and demand).'' \41\ Given the higher level of functions
provided by many caregivers, and the VA's own acknowledgement that wage
rates vary depending on the complexity of duties performed, the seventy
fifth percentile fails to address adequately the degree of personal
care services provided.
---------------------------------------------------------------------------
\40\ Federal Register (May 5, 2011): 26154.
\41\ Id.
---------------------------------------------------------------------------
Finally, setting the stipend at the 75th percentile fails to take
account of the purpose of the stipend, which is to provide a level of
financial support to ensure that the economic strains on family
caregivers do not result in or contribute to families no longer being
able to sustain their caregiving.\42\ The Secretary cannot ignore the
reality that setting the stipend level too low will directly result in
continued economic strain for caregivers. As scholars have observed,
caregiver pay provides a low living standard and ``caregiver'' is
included in the class of low-wage jobs that leave workers
struggling.\43\ Caregivers and other direct-service workers often do
not receive livable wages, and a high proportion of these workers rely
on some form of public assistance in order to make ends meet.\44\
Considered in terms of Bureau of Labor Statistics' national estimates,
a uniform per-hour stipend rate at the 75th percentile is only $11.55/
hour, more than $2.50/hour, or 18 percent, below the national estimate
at the 90th percentile.\45\
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\42\ See Sen. Rep. No. 111-080, Caregiver and Veterans Health
Services Act of 2009 (September 25, 2009), http://thomas.loc.gov/
cgibin/cpquery/?&dbname=cp111&sid=cp111sBb3W&refer
=&r_n=sr080.111&item=&&&sel=TOC_0& ``Hearing on Pending Health Care
Legislation,'' Committee on Veterans Affairs, U.S. Senate (April 22,
2009); http://veterans.senate.gov/
hearings.cfm?action=release.display&release_id=55fa0387-887a-479f-
b97618c26056444e
\43\ See Beth Shulman, The Betrayal of Work: How Low-Wage Jobs Fail
30 Million Americans, The New Press (2003).
\44\ Hewitt et al., ``A synthesis of direct service workforce
demographics and challenges access intellectual/developmental
disabilities, aging, physical disabilities, and behavioral health,''
National Direct Service Workforce Center (Nov. 2008).
\45\ Bureau of Labor Statistics, Id.
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Given that the stipend was designed to both reflect the degree of
services provided by family caregivers and afford caregivers financial
support to ease their economic strain, WWP urges that the caregiver
stipend be appropriately set at the 90th percentile of the hourly wage
rate in the geographic area of residence of the eligible veteran rather
than the 75th.
3. The IFR fails to address the processes for appealing adverse
decisions.
The IFR is silent with respect to both a right to appeal adverse
decisions under the program and with respect to the processes for
exercising that right. The omission is glaring and must be remedied. An
application for caregiver assistance may call upon VA personnel to make
a wide-ranging number of decisions any one of which holds the potential
for damaging error.
To illustrate, the law contemplates the potential for numerous
clinical determinations under the law, with clinical judgment
potentially involved in such determinations as whether there is a need
for personal care services; whether provision of caregiver-assistance
``is in the best interest of the veteran;'' the extent of caregiver-
assistance the veteran requires; and the quality of the personal care
services provided to the veteran. Any one of those decisions has far-
reaching ramifications. Yet VA claimants are barred from obtaining
judicial or even administrative review (through the Board of Veterans
Appeals) of ``medical determinations.'' It is critical, therefore, that
with respect to those decisions that are truly medical determinations,
the final regulation should, at a minimum, (a) specify the mechanism or
mechanisms through which a caregiver or veteran may appeal such a
decision, (b) require that caregivers and veterans be provided a
written explanation of the basis of any clinical determination they
question, (c) be afforded the right to provide independent medical
evidence in support of any appeal, and (d) be afforded a reasonably
prompt, independent review of such appeal.
The caregiver law, of course, states that ``[a] decision by the
Secretary under this section affecting the furnishing of assistance or
support shall be considered a medical determination.'' \46\ In our
view, therefore, a final regulation must provide claimants and
Department personnel clear direction as to precisely which issues under
this program are actually medical determinations and which are not. We
believe that the proper definition of ``medical determinations'' is the
one provided in 38 CFR Sec. 20.101(b): ``Medical determinations, such
as determinations of the need for and appropriateness of specific types
of medical care and treatment for an individual, are not adjudicative
matters and are beyond the Board's jurisdiction. Typical examples of
these issues are whether a particular drug should be prescribed,
whether a specific type of physiotherapy should be ordered, and similar
judgmental treatment decisions with which an attending physician may be
faced.'' Clearly establishing the applicability of this definition is
essential to making sure that veterans do not lose their due process
rights to challenge any adverse eligibility determination, as they have
such rights as to other services and benefits provided by the Veterans
Health Administration. See, e.g., 38 CFR Sec. 20.101(b) (``The Board's
appellate jurisdiction extends to questions of eligibility [.]'').
Providing a cross-reference to that regulation would limit unappealable
decisions under the statute to the kinds of clinical determinations
addressed in regulation. Compare Zimick v. West, 11 Vet. App. 45, 48
(1998) (``[S]pecific medical determinations as to the appropriate
medical treatment are not adjudicative matters over which the Board has
jurisdiction.''), with Meakin v. West, 11 Vet. App. 183, 187 (1998)
(``determinations as to whether the applicant is a veteran, whether he
seeks treatment for a service-connected disability, and whether VA
facilities are geographically inaccessible are on their face obviously
not medical determinations.''). Any broader limitation of appealability
would raise serious due process concerns by precluding veterans from
challenging eligibility and other similar determinations, to which they
have property rights under law. See Mathews v. Eldridge, 424 U.S. 319,
332 (1976); Nat'l Ass'n of Radiation Survivors v. Derwinski, 994 F.2d
583, 588 n.7 (9th Cir. 1992).
---------------------------------------------------------------------------
\46\ 38 U.S.C. Sec. 1720G(c)(1) (2010).
---------------------------------------------------------------------------
Certainly Congress cannot be deemed to have intended to abrogate a
claimant's right to due process. Additionally, Section 1720G(c)(1) must
be read to harmonize with an existing body of law, and longstanding
precedent, governing appellate and judicial review. Congress cannot
have intended that claimants would be denied the opportunity to pursue
appellate remedies on issues that would otherwise be subject to such
review. By way of illustration, Congress could not have intended to
deny claimants a right to administratively appeal a decision that a
veteran's injury was not (a) incurred in line of duty; (b) incurred on
or after September 11, 2001, or (c) incurred in service. Congress could
not have intended to deny a veteran the right to appeal a VA
determination that denies his or her application for comprehensive
caregiver assistance on the basis that the caregiver is not a member of
the veteran's family under 38 U.S.C. Sec. 1720G(d)(A). A VA denial of a
veteran's application based on a decision under 38 U.S.C.
Sec. 1720G(d)(B) that the veteran's caregiver (who is not a member of
the veteran's family) does not live with the veteran surely cannot be
beyond review on the ground that it is a ``medical determination.'' A
decision to deny a designated Primary caregiver travel benefits or a
monthly stipend to which she or he is specifically entitled by law
cannot be beyond the range of administrative and judicial review. Even
decisions made by clinicians cannot be shielded from administrative
review as an exercise of medical judgment when they are mistakenly
based on the wrong legal standard. It is not inconceivable, for
example, that a clinician or clinicians might determine that a veteran
not in need of personal care services based on their employing a ``need
for nursing home care'' criterion, contrary to law.
While Section 1720(c)(1) is apt recognition that implementing
Section 1720G(a) would entail a series of determinations requiring the
exercise of medical judgment, the legislative history provides not a
scintilla of evidence to suggest that Congress had any intention of
taking the unprecedented step of depriving veterans of longstanding
appellate rights. The final regulation must make that clear.
4. The IFR provisions regarding respite care fail to address specific
requirements of the caregiver law.
Respite is one of the most important needs caregivers face, and the
caregiver law provides important direction regarding this vital
support. But the IFR omits reference to a key provision of the law.
While the IFR states that respite care is to include ``24-hour-per day
care . . . commensurate with the care provided the Family caregiver to
permit extended respite,'' the IFR is silent regarding the critically
important statutory direction that ``respite care . . . shall be
medically and age-appropriate and include in-home care.'' Department
officials have advised that this omission was unintentional. WWP
appreciates programmatic efforts to stress the importance of making
such respite available, and certainly looks forward to having this
requirement clearly articulated in the final regulation. Of course,
absent language that at least restates that requirement, there is
concern that VA facility personnel might at some point erroneously
advise caregivers that their only extended-respite option is to place
their warriors in VA nursing home units-- precisely the concern that
prompted the age-appropriate, in-home provisions of the law.
5. The final regulation should clarify CHAMPVA eligibility where a
caregiver loses prior coverage.
Section 71.40(c) aptly states that ``VA will provide to Primary
family caregivers all of the benefits listed in paragraphs (c)(1)
through (4).'' But the IFR goes on to state at Section 71.40(c)(3) that
``primary family caregivers are to be considered eligible for
enrollment in the Civilian Health and Medical Program of the Department
of Veterans Affairs (CHAMPVA), unless they are entitled to care or
services under a health-plan contract''.\47\ Stating that ``caregivers
are to be considered eligible'' undercuts that directive language--
diluting an expression of entitlement into a vague instruction. In
short, the phrase ``to be considered'' is ambiguous surplusage, and
should be deleted from the final regulation.
---------------------------------------------------------------------------
\47\ 38 CFR Sec. 71.40(c)(3) (2011).
---------------------------------------------------------------------------
The IFR phrasing has significance, however, because it highlights
the fact that unidentified VA personnel will make determinations under
this section as to whether caregivers ``are entitled to care or
services under a health-plan contract.'' That raises the question, what
further guidance will those personnel be given in making such
determinations? It would not be extraordinary, for example,
particularly under current economic conditions, for a caregiver to lose
health insurance coverage benefits after having begun to receive VA
caregiver-assistance. (One can readily imagine, for example, the plight
of a middle-aged mother who, as her warrior-son's full-time caregiver,
suddenly loses health benefits when her husband loses his job. Consider
also that the same caregiver, living on a fixed, limited income and
facing growing expenses might lose health coverage because of being
unable to afford to pay health-care premiums.) It should be made clear
that entitlement to CHAMPVA coverage is not simply a one-point-in-time
determination, but that this support must be provided when needed
throughout the period of caregiving.
The law itself makes this clear, stating without qualification as
to any point in time, ``the Secretary shall provide to family
caregivers . . . medical care under Section 1781 of this title.''
Importantly, too, the purpose of the law is ``to provide assistance to
caregivers of veterans'' in recognition of their inherent
vulnerabilities.\48\ As WWP testified in support of the S. 801 (later
incorporated into S. 1963), ``studies have shown that family caregivers
experience an increased likelihood of stress, depression, and mortality
as compared to their non-caregiving peers'' and ``caregivers report
poorer levels of perceived health, more chronic illnesses, and poorer
immune responses to viral challenges.'' \49\ Senator Daniel Akaka, the
lead sponsor of S. 801 and then-Chairman of the Senate Veterans'
Affairs Committee, acknowledged these vulnerabilities and stated that
the purpose of S. 801 was to ``help alleviate those problems [such as
decreased household income and potential loss of health insurance] so
as to allow the caregiver to focus entirely on caring for the
veteran.'' \50\ A caregiver's losing health coverage certainly creates
additional vulnerability for both the caregiver and the veteran. We
urge that the provision be clarified to ensure that caregivers who at
any point in time lose prior health benefits can enroll in CHAMPVA.
---------------------------------------------------------------------------
\48\ Explanatory Statement: Amendment of the House of
Representatives to S.1963 Caregivers and Veterans Omnibus Health
Services Act of 2010. Submitted by Senator Akaka, Congressional Record
156:58 S2566 (April 22, 2010) Available from: U.S. Government Printing
Office; accessed June 20, 2011.
\49\ Hearing on Pending Health-Related Legislation, Committee on
Veterans Affairs, U.S. Senate (April 22, 2009)
\50\ Senator Akaka (HI). Congressional Record 155:56 (April 2,
2009) p. S4350 Available from: U.S. Government Printing Office;
accessed June 20, 2011.
---------------------------------------------------------------------------
6. The final regulation should clarify eligibility for reimbursement
of travel expenses.
In comments supplementing publication of the IFR, the VA
acknowledges that ``VA must provide Primary and Secondary family
caregivers with 'lodging and subsistence under [38 U.S.C.] 111(e),' ''
\51\ as amended by the caregiver law. The VA states that it has
implemented that requirement by including in the IFR a provision
stating that family caregivers ``are to be considered eligible for
beneficiary travel under 38 CFR part 70.'' This phrasing suffers from
the same flaw as the ``are to be considered eligible'' phrasing
employed with respect to CHAMPVA (discussed above). Moreover, the IFR
fails to amend the beneficiary travel regulations at 38 CFR part 70 or
to include any language addressing the scope of the travel benefit
established in Section 104 of the caregiver law. However, that
provision of the caregiver law makes it clear that a family caregiver
is eligible for the expenses of travel in connection with (and for the
duration of) a veteran's examination, treatment, or care
notwithstanding that the veteran may not need an attendant to perform
such travel.
---------------------------------------------------------------------------
\51\ Federal Register (May 5, 2011): 26153.
---------------------------------------------------------------------------
WWP has received reports from caregivers indicating apparent
misunderstanding on the part of VA personnel regarding caregivers'
eligibility for beneficiary-travel reimbursement. In our view, failing
to include in regulations the substantive changes in beneficiary-travel
eligibility established in the caregiver law (beyond the vague
statement that caregivers are to be considered eligible for beneficiary
travel) can only compound the risk of error.
Wounded Warrior Project have not received any Federal grants or
contracts, during this year or in the last two fiscal years,
from any agency or program relevant to the subject of the July
11, 2010 Subcommittee on Health Oversight Hearing on the
Caregiver Assistance Program implementation.
MATERIAL SUBMITTED FOR THE RECORD
Committee on Veterans' Affairs
Subcommittee on Health
Washington, DC.
July 13, 2011
Ms. Deborah Amdur, LCSW
Chief Consultant, Care Management and Social Work
Veterans Health Administration
U.S. Department of Veterans Affairs
810 Vermont Avenue, NW
Washington, DC 20420
Dear Ms. Amdur:
In reference to our Subcommittee on Health Committee hearing
entitled ``Implementation of Caregiver Assistance: Moving Forward?''
that took place on July 11, 2011. I would appreciate it if you could
answer the enclosed hearing questions by the close of business on
August 13, 2011.
In an effort to reduce printing costs, the Committee on Veterans'
Affairs, in cooperation with the Joint Committee on Printing, is
implementing some formatting changes for materials for all full
Committee and Subcommittee hearings. Therefore, it would be appreciated
if you could provide your answers consecutively and single-spaced. In
addition, please restate the question in its entirety before the
answer.
Due to the delay in receiving mail, please provide your response to
Jian Zapata and fax your responses to Jian at 202-225-2034. If you have
any questions, please call 202-225-9756.
Sincerely,
Michael H. Michaud
Ranking Democratic Member
Enclosure
CW:jz
Questions for the Record
House Committee on Veterans' Affairs
Subcommittee on Health
Ranking Member Michael H. Michaud
Hearing on Implementation of Caregiver Assistance:
Are We Getting It Right?
July 11, 2011
Budget
Question 1: Are there any updates in the projected funding needs to
implement the caregiver program and to continue to maintain through at
least FY 2015?
Response: Updated funding needs were provided in the preamble of
VA's Caregivers Program Interim Final Rule published on May 5, 2011.
The updated estimates are displayed in the chart below:
Cost of Projections for Caregiver Program--(FY 2011-FY 2015)
--------------------------------------------------------------------------------------------------------------------------------------------------------
Description of Costs FY 2011 FY 2012 FY 2013 FY 2014 FY 2015 5 Year Total
--------------------------------------------------------------------------------------------------------------------------------------------------------
Caregiver Program Staff $8,083,644.80 $19,400,747.43 $20,176,777.32 $20,983,848.42 $21,823,202.37 $90,468,220.34
--------------------------------------------------------------------------------------------------------------------------------------------------------
Caregiver Program Stipend $27,617,530.00 $77,658,984.00 $83,992,329.20 $90,834,536.00 $96,215,650.00 $378,319,029.20
--------------------------------------------------------------------------------------------------------------------------------------------------------
Respite Care $13,815,832.00 $35,156,000.00 $37,966,400.00 $41,107,360.00 $44,436,480.00 $172,482,072.00
--------------------------------------------------------------------------------------------------------------------------------------------------------
Mental Health Services $305,660.00 $992,970.00 $1,073,088.00 $1,158,606.00 $1,254,894.00 $4,785,218.00
--------------------------------------------------------------------------------------------------------------------------------------------------------
General Care Educ. & Trng. $6,057,760.00 $190,185.60 $205,852.80 $222,682.50 $240,683.40 $6,917,164.30
--------------------------------------------------------------------------------------------------------------------------------------------------------
Lodging/Mileage/Meal Per Diem (Veteran $466,975.52 $1,211,092.78 $1,308,547.76 $1,413,433.83 $1,528,241.79 $5,928,291.68
Inpatient/Outpatient Visits)
--------------------------------------------------------------------------------------------------------------------------------------------------------
Mileage for Caregiver Training $373,085.00 $35,856.00 $37,350.00 $38,844.00 $40,338.00 $525,473.00
--------------------------------------------------------------------------------------------------------------------------------------------------------
Health care Coverage (CHAMPVA) $2,752,390.92 $6,765,401.32 $6,943,472.78 $7,505,688.62 $8,205,989.03 $32,172,942.66
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Caregiver Oversight (Contract) $0.00 $1,448,846.08 $1,567,203.20 $1,694,887.36 $1,833,527.52 $6,544,464.16
--------------------------------------------------------------------------------------------------------------------------------------------------------
Caregiver Oversight (VA) $4,014,070.96 $10,420,334.14 $11,271,763.58 $12,189,701.34 $13,184,910.50 $51,080,780.52
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Caregiver Support Line $1,500,000.00 $2,500,000.00 $2,599,999.58 $2,703,999.11 $2,812,159.03 $12,116,157.72
--------------------------------------------------------------------------------------------------------------------------------------------------------
Study and Survey $245,959.20 $238,359.20 $225,859.20 $0.00 $0.00 $710,177.60
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Outreach & Additional Supt. Programs $3,811,561.00 $2,673,358.00 $2,772,356.00 $2,830,224.00 $2,923,433.00 $15,010,932.00
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TOTAL $69,044,469.40 $158,692,134.55 $170,140,999.42 $182,683,811.18 $196,499,508.63 $777,060,923.18
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Question 2: I understand that the Administration has provided an
additional $208 million for implementation of P.L. 111-163.
Question 2(a): Is that funding included in the FY 2012 Medical Care
budget request?
Response: Yes. Of the $208 million, over $158 million is for the
Caregiver Program and $49 million is for the remaining requirements in
the law.
Question 3: Would you be able to provide the Committee the number
of requests that you receive for services when you have the final
number?
Response: Yes. The Department of Veterans Affairs (VA) has
developed a comprehensive tracking tool, the Caregiver Application
Tracker, which enables us to track the number and status of
applications received. As of August 5, 2011, VA has received over 1,729
applications for the Program of Comprehensive Assistance for Family
Caregivers. VA made 528 stipend payments in the month of August. At
present, 120 primary family caregivers are eligible for Civilian Health
and Medical Program for the Department of Veterans Affairs (CHAMPVA)
benefits, out of which 83 are eligible for CHAMPVA benefits based on
the Program of Comprehensive Assistance for Family Caregivers.
Requests for Caregiver services can include those of both family
and general caregivers. Under the new Program of Comprehensive
Assistance for Family Caregivers, Family caregiver service requests
include applications for stipend and CHAMPVA benefits, as well as
requests for training (which is part of the required application
process), requests for respite care, and requests for mental health
services. All of these requests and related data are being recorded in
our newly developed Caregiver Application Tracker and in our existing
computerized patient medical record system.
In addition, requests for general caregiver services can include
any of the more than two dozen existing VA services that were available
to all era veterans and their caregivers prior to the enactment of P.L.
111-163. We have recently developed new funding codes to track the use
of general caregiver services and their related costs along with family
caregiver services and costs. Tracking and analyzing the data on both
family and general caregivers will provide VA with valuable information
in planning for the future needs of veterans and their caregivers.
VA will provide regular reporting to Congress on this and other
caregiver-related data and information.
Eligibility
Question 1: What other information aside from interviews, medical
records, consultations with medical staff, compensation and pension
examinations, etc. is assessed in determining eligibility for this
benefit?
Response: Primarily, a determination of eligibility for the Program
of Comprehensive Support for Family Caregivers is a clinical
assessment. First, eligibility is determined by reviewing the veteran's
demographic data to ensure the veteran incurred or aggravated a serious
injury in the line of duty on or after September 11, 2001. If this
information is missing, incomplete, or in question, further review may
be conducted by VA's Health Eligibility Center to obtain required
information from Department of Defense (DoD) records.
However, in determining an applicant's clinical eligibility for
family caregiver benefits, VA takes a whole-person approach. To that
extent, not only do we review records and conduct interviews with the
veteran and their caregiver, but the local Caregiver Support
Coordinator (CSC) also works with all the members of the Veteran's
Patient Aligned Care Team, which may include the veteran's caregiver,
the Federal Recovery Coordinator, the Operation Enduring Freedom/
Operation Iraqi Freedom/Operation New Dawn (OEF/OIF/OND) Case Manager,
service liaisons, occupational or physical therapists, mental health
clinicians, and any other medical specialty provider that may be
assigned to the team. If there is a question about a particular item on
the assessment, the veteran can be seen by a specialist, such as an
occupational therapist, to determine the level of personal assistance
that the veteran requires in a specific area. VA does require that a
veteran be receiving on-going care from a VA-designated clinical team
to participate in the Family Caregiver program.
Primary family caregivers who are entitled to care or services
under a health plan contract, including TRICARE, Medicare, Medicaid, or
a commercial health insurance plan, are not eligible for CHAMPVA as a
primary family caregiver.
Question 2: Are there any provisions in place requiring that
caregivers be informed of how their eligibility for the stipend is
calculated in the event that they would like to appeal the decision?
Response: Caregivers are provided with information about filing an
appeal when the CSC contacts them regarding a denial. This guide
details the clinical appeals process, as well as the requisite steps.
CSCs also will help direct caregivers to their facility's patient
advocate, who will help the veteran and caregiver through the appeals
process.
Based on the feedback received at the July 11, 2011 hearing, and in
response to feedback from several caregivers, we are establishing a
procedure where family caregivers will be mailed a stipend
determination letter that will list their stipend tier (determined by
the clinical assessment), their stipend amount (determined by the tier
and a formula published in the Interim Final Rule), information on how
the stipend was calculated, and the appeals process. The format and
content of this letter will be fully developed by September 2011. VA
will provide individual letters to each primary family caregiver who
has received a stipend to-date, and all new primary family caregiver
stipend recipients thereafter. CSCs will then follow up with each
stipend recipient to explain the tier amount. During this follow-up,
the clinical assessment form will be reviewed with the caregiver and
veteran as a quality check and to further explain the tier calculation
determination.
Question 3: How can a veteran or caregiver appeal an adverse
medical or legal decision?
Response: A veteran can appeal an adverse decision through VA's
clinical appeals process. 38 U.S.C. 1720G(c)(1) specifies that, ``[a]
decision by the Secretary under this section affecting the furnishing
of assistance or support shall be considered a medical determination.''
Consequently, all decisions regarding eligibility for, and the
provision of benefits under, the Caregiver program will be considered
medical determinations, appealable through the clinical appeals
process, as defined by the Veterans Health Administration (VHA)
Directive 2006-057.
In the context of the Program of Comprehensive Assistance for
Family Caregivers, the veteran (or designated representative) can
appeal a medical decision by requesting a facility-level document
review. If the veteran is not satisfied with the decision, he or she
may appeal to the Veterans Integrated Service Network (VISN).
The VISN's clinical panel will review the veteran's record along
with other documentation and make a recommendation to the VISN
Director. The VISN panel can also request an independent external
review at any time during the process. A final written report with the
findings and recommendations, from the external review, will be
provided to the VISN Director within 10 days of the full documentation
request. A decision will be made within 30 days for internal reviews,
and for external reviews, within 45 days.
In accordance with 38 CFR Sec. 20.101(b), which discusses the Board
of Veterans' Appeals as they relate to determinations made by VHA,
clinical decisions concerning a veteran's need for medical care or the
type of medical treatment needed in a particular patient case are not
within the Board's jurisdiction; as a result, such clinical decisions
may not be appealed to the Board of Veterans' Appeals.
Question 4: Has there been discussion about beginning the
application for caregiver benefits while a veteran is they are still on
active-duty beginning with the start of the Medical Evaluation Board
(MEB) process, rather than waiting until they have transitioned to
veteran status?
Response: Members of the Armed Forces ``undergoing medical
discharge'' are eligible for the Family Caregiver program under the
law. However, in response to the Interim Final Rule, we have received a
number of public comments regarding the application process and its
initiation for current servicemembers. We are currently reviewing these
comments and will respond to them pursuant to the regulatory comments
process.
Question 5: Concerns have been raised that veterans who have
incurred a severe illness as a result of their service are excluded
from consideration for this program. Is this true?
Question 5(a): PVA testified that VA believes that they need
clarifying legislation in order to include severe illnesses to be
considered for eligibility to the program. Can you please comment on
this?
Response: The law prescribes eligibility criteria that the veteran
or servicemember must meet in order to participate in the Program of
Comprehensive Assistance for Family Caregivers including that the
veteran or servicemember has a ``serious injury (including traumatic
brain injury, psychological trauma, or other mental disorder) incurred
or aggravated in the line of duty . . . on or after September 11,
2001.'' 38 U.S.C. 1720G(a)(2)(B).
While ``psychological trauma[s]'' or ``other mental disorder[s]''
may be considered illnesses, the statutory eligibility criteria does
not account for other conditions that are considered to be illnesses,
but only those conditions that are considered to be serious injuries.
Legislation would be required to authorize VA to include illnesses in
the Program of Comprehensive Assistance for Family Caregivers
eligibility criteria. Therefore veterans and servicemembers with a
serious or severe illness, who do not have a qualifying serious injury,
do not meet the statutory eligibility criteria for the Family Caregiver
program.
Mental Health
Question 1: I appreciate that the Interim Final Rule includes
criteria for veterans with traumatic brain injury.
Question 1(a): In the case of a veteran who has PTSD, depression or
anxiety, has VA explored ways to assist family members who must provide
care for these veterans?
Response: Psychological trauma or other mental disorders are
specifically considered to be serious injuries under 38 U.S.C.
1720G(a)(2)(B), and veterans with these conditions may be eligible for
the Program of Comprehensive Assistance for Family Caregivers if all
other eligibility criteria are met, including that the veteran's
serious injury renders him or her in need of personal care services (as
defined) for at least 6 continuous months based on any one of the
following clinical criteria: (1) inability to perform an activity of
daily living (as defined); (2) need for supervision or protection based
on symptoms or residuals of neurological or other impairment or injury
(as defined), including traumatic brain injury; (3) psychological
trauma or mental disorder that has been scored, by a licensed mental
health professional, with a Global Assessment of Functioning (GAF) test
scores of 30 or less, continuously for the requisite time period; or
(4) service-connection for qualifying serious injury, has been rated
100 percent disabled for that serious injury, and has been awarded
Special Monthly Compensation that includes an Aide and Attendance
allowance.
Family members of persons with PTSD, depression, or anxiety, as
well as family members of veterans with psychosis or bipolar disorder,
often need assistance understanding how to support the veteran's
independence and strategies to support his or her reaching their
specified goals. Family members and loved ones also need support and
guidance for their own health. Their needs often are distinct from
those of caregivers for veterans with chronic, debilitating physical
disorders such as Alzheimer's, dementia, severe cardiovascular illness,
or end stage lung disease, which also typically worsen over time
despite effective health care. For caregivers of this second group of
veterans, obtaining assistance helping the veteran meet basic
activities of daily living and instrumental activities of daily living
often becomes the paramount issue.
While both groups of family members may clearly benefit from VA
assistance, their individual requests usually differ. Families of
persons with PTSD, depression, or anxiety, as well as family members of
those with psychosis or bipolar disorder, often desire assistance in
communicating better with their veteran loved one, learning how to de-
escalate conflicts, and developing strategies for supporting the
veteran's independence rather than strategies for directly handling the
veteran's needs themselves.
Family caregivers of those with chronic physical health conditions
may, in contrast, want to know about respite care, protecting the
veteran's physical safety, or assuring the veteran does not wander off
and become lost. Consistent with this observation, surveyed spouses of
veterans with PTSD requested such services as an educational program
about PTSD and couples therapy to ``better support their loved ones.''
\1\ In contrast, Caregivers of veterans who had had cerebral strokes
reported the most unmet needs around managing behavior at home (e.g.,
falling), managing emotional ups and downs, and assuring the physical
safety of the veteran.\2\
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\1\ Sherman, M. D, et al. (2005). Mental health needs of cohabiting
partners of Vietnam veterans with combat-related PTSD. Psychiatric
Services 56(9): 1150-2.
\2\ Hinojosa, M. S. and M. R. Rittman (2007). Stroke caregiver
information needs: comparison of Mainland and Puerto Rican caregivers.
Journal of Rehabilitation Research and Development 44(5): 649-58.
---------------------------------------------------------------------------
In this context of evidence-based, recovery-oriented mental health
care, a basic tenet is that many individuals with mental illness are
capable of living independently, setting and striving to meet their own
personal goals, and handling personal challenges. In most cases, they
do not need a ``caregiver,'' as that role is defined in the context of
dementia, severe traumatic brain injury, and other chronic,
debilitating physical problems. Certainly, research suggests that
positive family support can be a critical aspect of recovery from
mental illnesses such as PTSD, depression, and anxiety. For example,
positive family attitudes are associated with successful outcomes in
PTSD treatment,\3\ as well as reduced rates of relapse in depression
and schizophrenia.\4\ Data such as these serve as the foundation for
the development of VA's continuum of family services, which support
family members who are assisting with the veteran's mental health
recovery. VA has made a commitment to implementing evidence-based
practices, Veteran- and family-driven care, and a recovery-oriented
mental health system, where those with mental illnesses have the
essential services and supports necessary to live, work, learn, and
participate fully in the community.
---------------------------------------------------------------------------
\3\ Tarrier, N., C., et al. (1999). Relatives' expressed emotion
(EE) and PTSD treatment outcome. Psychol Med 29(4): 801-11.
\4\ Wearden, A. J., et al. (2000). A review of expressed emotion
research in health care. Clinical Psychology Review 20(5): 633-66.
---------------------------------------------------------------------------
VA also recognizes that a subset of those with mental illness do
have more serious, debilitating, and treatment-resistant symptoms, that
are reflected in low scores on the GAF scale. Veterans who do
demonstrate sustained low GAF scores (30 or less), pose significant
safety risks, or are in need of ongoing supervision, and meet the other
program eligibility criteria are eligible for the full range of
caregiver benefits. However, VA also is committed to meeting the array
of family members' needs that emerge as they provide care and support
for any veteran with mental illness, and VA has embarked on a number of
family services initiatives that complement the specific provisions of
the Program of Comprehensive Assistance for Family Caregivers. These
include discussing family involvement with the patient on a regular
basis, offering marriage and family counseling (as provided for under
38 U.S.C. Sec. 1782), family education, veteran-centered family
consultation, family psychoeducation (an evidence-based model of family
counseling and therapy), and integrative behavioral couples therapy.
Home Visits
Question 1: In our March hearing, it was recommended that the
quarterly home visitations be reduced over time to be less intrusive
for families. Has this been explored further since?
Response: Current guidance to the field is to complete the
supportive in-home assessment at least quarterly, or as clinically
indicated. In other words, if the veteran has a Home-Based Primary Care
Team already providing regular home services, and if the team can also
complete the in-home assessment as part of a scheduled service, a
separate visit may not be necessary. In addition, if during an initial
home visit, no follow-up needs or concerns were identified, the
veteran's clinical team could decide to lengthen the time between home
visits. The time span between home visits will remain a clinical
decision.
Although we appreciated the individual concerns reported at the
hearing and we are reviewing the issues reported, the vast majority of
the reports we have received concerning the home visits, have been
consistently positive. In most cases, these reports have been
unsolicited and support the theory of a helpful and informational home
visit. One recent example of these reports includes a caregiver
stating, ``This was the most extensive evaluation my son has had since
he was first injured almost 7 years ago.'' We would not want to
decrease the frequency of the visits for those who are receiving the
support and benefit intended by that process.
Many of the supportive home visits have also enabled VA to identify
additional resources and services that can benefit the caregiver and
veteran. In several cases, additional care needs for the veteran have
been identified and appointments have been scheduled in specialty
clinics. Home visits have also resulted in additional equipment being
provided in collaboration with the CSC and Patient Aligned Care Team.
In one case, the veteran's young children had few age-appropriate toys
to play with because of competing financial decisions the family was
forced to make. The nurse who completed the home visit and the CSC were
able to identify community resources that provided additional toys to
the veteran's children, and this family was most appreciative. We
believe these examples are in keeping with the caring intent and
supportive purpose of the home visit requirement.
Monthly Stipend
Question 1: DAV recommends that VA determine the frequency and
hours required to perform personal care services.
Question 1(a): Can you expand on why this assessment is not used to
determine the amount and degree of personal care services each veteran
needs?
Response: VA determines the frequency and hours required to perform
personal care services through a standardized review of the type and
intensity of caregiver assistance required to provide a safe and
supportive home environment for the veteran. The level of care required
is bracketed into tiered categories that can be equated to minimum,
medium, or maximum hours (maximum hours would be considered up to 40
hours per week). The amount of the stipend provided to the primary
family caregiver will represent the maximum amount available for the
tier to which the veteran is assigned. The standardized review is
facilitated through an assessment template that includes the major
components of three evaluation instruments that are widely accepted in
the health care field and that have been refined and consistently
validated in research. The assessment template reviews both activities
and instrumental activities of daily living; functional capacity
specific to mental and cognitive impairment that may be present in
traumatic brain injury, post-traumatic stress disorder, or other mental
disorders; the veteran's ability to live and function independently;
and any need for supervision or protection that may be required to
support the veteran's living at home.
The three evaluation instruments that were used to develop VA's
Caregiver clinical eligibility assessment template are the Katz Basic
Activities of Daily Living Scale, the UK Functional Independence
Measure (FIM) and Functional Assessment Measure (FAM), and the
Neuropsychiatric Inventory (NPI).
Katz Index of Independence in Activities of Daily Living
The Katz Index of Independence in Activities of Daily Living,
commonly referred to as the Katz ADL, is the most appropriate
instrument to assess functional status as a measurement of the client's
ability to perform activities of daily living independently. Clinicians
typically use the tool to detect problems in performing activities of
daily living and to plan care accordingly. The index ranks adequacy of
performance in the six functions of bathing, dressing, toileting,
transferring, continence, and feeding. In the 35 years since the
instrument has been developed, it has been modified and simplified and
different approaches to scoring have been used. In that time, the Katz
ADL has gained increased acceptance as an accurate measure of physical
functioning. National databases, state long-term care programs,
insurers who offer private long-term care insurance policies, Federal
legislation, and a body of research literature routinely use
limitations in the ADLs identified by Katz as appropriate proxies for
an individual's level of physical impairment.
UK Functional Independence Measure (FIM)
The FIM is the product of an effort to resolve the long standing
problem of lack of uniform measurement and data on disability and
rehabilitation outcomes. It was designed to assess areas of dysfunction
in activities which commonly occur in individuals with any progressive,
reversible or fixed neurologic, musculoskeletal and other disorders.
The Functional Assessment Measure (FAM) was developed by clinicians
representing each of the disciplines in an inpatient rehabilitation
program. The FAM was developed as an adjunct to the FIM to specifically
address the major functional areas that are relatively less emphasized
in the FIM, including cognitive, behavioral, communication, and
community functioning measures. In clinical research studies, the
FIM+FAM scales have demonstrated high internal reliability and prove
adequate for most clinical and research purposes in comparable samples
of patients with head injury.
Neuropsychiatric Inventory
The Neuropsychiatric Inventory (NPI) is a tool for assessment of
psychopathology in patients with dementia and other neuropsychiatric
disorders. The NPI is based on a structured interview with a caregiver
who is familiar with the patient. The following neuropsychiatric
domains are evaluated: delusions, hallucinations, dysphoria, anxiety,
agitation/aggression, euphoria, disinhibition, irritability, apathy,
aberrant motor activity, and night-time behavior disturbances.
Content validity, concurrent validity, inter-rater reliability, and
test-retest reliability of the NPI are established in research. The NPI
is a useful instrument for characterizing the psychopathology of
dementia syndromes, investigating the neurobiology of brain disorders
with neuropsychiatric manifestations, distinguishing among different
dementia syndromes, and assessing the efficacy of treatment.
Training
Question 1: In regard to training, I understand there is a basic
self-guided workbook.
Question 1(a): Will there be efforts to provide workbooks for more
specialized instruction?
Question 1(b): Will there be efforts to help tailor training to
individual veterans' needs?
Response: The workbook is one modality of the comprehensive
curriculum that was designed in partnership with Easter Seals to
provide family caregivers with the basic information necessary to be
successful in their responsibilities. Additional curriculum modalities
include the supportive CD that accompanies the home study workbook,
traditional classrooms which are scheduled nationwide and are available
for scheduling per caregiver request, and a soon-to-be-launched online
version of the comprehensive training. The core caregiver training is
designed to supplement individual and general training information and
services VA has continued to offer.
Training on the individual veteran's needs is a separate process
that remains the responsibility of the Patient Aligned Care Team or
other assigned provider at the local VA medical center (VAMC). This
specific training on individual medical or mental health conditions and
needs is presented to the veteran and caregiver at ongoing
appointments, in the home, or may have taken place prior to discharge
from a VAMC facility or Polytrauma Center. For example, prior to
discharge from an inpatient unit, a family caregiver may be taught to
change a dressing or assist with intravenous (IV) antibiotics that the
veteran will need when they return home. On rehabilitation units, such
as spinal cord injuries and disabilities centers, there are apartments
available where veterans and caregivers may stay prior to discharge to
``test'' their new skills before the veteran is discharged.
Additionally, VA has an extensive array of condition-specific
training and resources, including classroom and small group training,
pamphlets, guidebooks and coordination with local resources, for
specific medical or mental health conditions in general. All of this
information and these resources are available to any veteran or
caregiver as requested or appropriate.
Question 2: We heard from one caregiver with 6 plus years of care
giving, that she was insulted by the workbook.
Question 2(a): Is there a plan to expedite training for those
caregivers who already have significant experience?
Response: VA understands the frustration experienced by this
caregiver and has been mindful of these sensitivities in developing the
Easter Seals Caregiver training curriculum. VA believes the training
material accurately acknowledges and respects the time and sacrifice of
both new and experienced caregivers. Beyond a very small number of
similar reports on the workbook, VA has received an unprecedented
number of unsolicited reports from caregivers that have been most
appreciative and complimentary of the training material.
A recent example of such reports is from a father of a post-9/11
veteran who wrote: ``Eight years after embarking on the toughest role
of my life, and the most rewarding, I am grateful to see such a user
friendly, thorough, simple, encouraging, uplifting, Caregiver training
tool. In the span of an hour, I reviewed lessons I was forced to learn
on my own (but was grateful for the validation), I was reminded of
skills/tips I learned along the way (and sometimes forget to practice)
but, most importantly, was provided with an easy-to-navigate workbook
that can sit on my kitchen desk as a reminder to our entire family that
all of the information necessary to care for [our veteran] (and
ourselves) is easily accessible.''
While VA recognizes that many caregivers may have already received
skills and knowledge through training or experience, it is important to
establish a standard baseline of understanding for all family
caregivers. We believe this is facilitated through the various training
modalities so caregivers can decide independently if they would like to
spend 10 to 15 hours in a traditional classroom, or navigate training
online or through a self-paced workbook. Since the training includes a
brief self-assessment with answers that validates the completion of
required training, we believe caregivers can use their own discretion
in how much time they spend on the training, and in doing so, they
confirm they have received the basic or core training required.
VA and Easter Seals continue to evaluate the caregiver training and
will make modifications, as appropriate.
Question 3: How many hours long is the training?
Response: Current family caregiver classroom training lasts
approximately 10 to 15 hours spread over 2 days. The time it takes to
complete the workbook will vary significantly from caregiver to
caregiver, depending on their existing knowledge and experience. Again,
Family caregivers determine which mode of training they prefer, and
many family caregivers have stated they prefer completing the home
workbook at their own pace while others have opted for the workbook and
plan to attend the classroom training at a later date. An online
version of the curriculum will be available shortly.
Family caregivers who have completed the classroom training have
reported exponential benefit beyond the training material in being able
to meet and network with other caregivers or to learn more about
existing VA services and benefits of which they were not previously
aware. It should also be noted that the training content and course
length was designed with input from caregivers beforehand, and we have
actively sought input and feedback from all caregivers completing the
training so we can continue to refine the process to best meet the
needs of caregivers while also completing the baseline training
objective for all caregivers.
CHAMPVA
Question 1: What guidance is given to personnel making
determinations regarding CHAMPVA?
Response: The CSC at the VAMC receives guidance through training,
fact sheets, and procedures to advise the primary family caregiver that
eligibility for CHAMPVA health care benefits is limited to those
primary family caregivers who are not entitled to care or services
under a health plan contract such as TRICARE, Medicare, Medicaid, or
other health insurance. The CSC asks the caregiver if he/she has other
such coverage, and this information is entered into a database for use
by the CHAMPVA program staff. The staff at CHAMPVA, utilizing detailed
desk procedures for guidance, verifies that the primary family
caregiver is not entitled to care or services under a health plan
contract and also reviews the veterans' record to determine if the
caregiver may qualify for CHAMPVA based on other eligibility category
(other than the individual serving as a designated primary family
caregiver).
Question 2: Of this first pool of recipients, approximately how
many will be receiving CHAMPVA benefits?
Response: The first pool of stipend recipients contained 215
primary family caregivers, out of which 80 primary family caregivers
were enrolled in CHAMPVA. 65 primary Family caregivers, out of the 80,
were eligible for CHAMPVA benefits based on the Program of
Comprehensive Assistance for Family Caregivers. At present, 120 primary
family caregivers are eligible for CHAMPVA benefits, out of which 83
are eligible for CHAMPVA benefits based on the Program of Comprehensive
Assistance for Family Caregivers.
Implementation
Question 1: What training materials are available for secondary
caregivers?
Response: Currently all the training material available to primary
family caregivers is also available to secondary family caregivers.
This includes the home-based workbook for the core family caregiver
curriculum, the traditional classroom instruction, and the online
course. To date, the workbook has been the most requested mode of
training, and additional copies of the workbook can be made available
upon request. We continue to encourage family caregivers (which can
include the primary or secondary caregiver) to attend the classroom
instruction when possible because VA has observed additional benefits
to caregivers in peer networking and raised awareness of VA services
and benefits.
Question 2: I commend your partnership with Easter Seals to provide
the comprehensive Caregiver Training. How long is this partnership
expected to last or will the VA eventually be able to provide this
training in house?
Response: VA's comprehensive family caregiver training was
developed through a contract with Easter Seals, which ends around May
2012. The current partnership has been very beneficial for caregivers,
since both VA and Easter Seals have combined efforts and resources to
make classrooms, trainers, and networked resources available to
caregivers nationwide. VA will review the quality and progress of the
Easter Seals training as we move forward and will use that information
in determining whether or not to renew the contract or to consider
other options in the future.
Question 2(a): Are there other organizations also assisting in this
training?
Response: Yes, several other organizations worked in collaboration
with VA and Easter Seals in developing the core caregiver training
which included research, design, development, revision, and now
includes ongoing review and quality assurance. These additional
organizations include: Atlas Research, the National Alliance for
Caregiving, the Family Caregiver Alliance, the National Alliance for
Hispanic Health, and the National Family Caregivers Association.
Question 3: Would you comment on the variability at the local level
that we have heard about in rolling out the program?
Question 3(a): How are you monitoring implementation at the VA
medical centers?
Response: VA researched the issue of variability that was reported
in the recent hearing and has continued to review the issue on a
broader scale.
As part of our broader review on quality, validity, and inter-rater
reliability, VA randomly sampled various caregiver clinical assessments
completed at 21 different VAMCs representing each national region, and
found that there was a variance of less than 16 percent between similar
decisions made by facilities. Of that 16 percent variance, more than
half of those would have been rated at a lower stipend tier by the
quality reviewer, so the variance that existed was in the veteran's
favor. There were three cases identified that the quality reviewer
would have rated higher, and each of those cases has been reviewed and
adjusted, as necessary, by the Patient Aligned Care Team.
VA will continue to monitor the consistency of implementation of
the program across VAMCs. We will also continue to train all staff
involved in the assessment and application process to maintain accurate
and consistently high quality assessment.
Miscellaneous
Question 1: The National Military Families Association recommends
that VA offer these caregivers the opportunity to participate in VA's
vocational rehabilitation programs and to help retool the caregiver's
resume.
Question 1(a): Has this idea been explored?
Response: Currently, VA's Vocational Rehabilitation and Employment
(VR&E) program may only provide educational and vocational counseling
to a family caregiver if the caregiver is eligible for education
benefits under Title 38 of the United States Code, Chapter 35,
Survivors' and Dependents' Educational Assistance, or is eligible as a
veteran for Chapter 31 or education benefits. The President's
Commission on Care of America's Returning Wounded Warriors recommended
strengthening family support systems and improving the quality of life
for families. The availability of educational and vocational
counseling, coupled with the supportive counseling provided by VHA, can
help caregivers cope with the changes caused by an injury to a family
member. These resources facilitate career and life planning by helping
caregivers understand available options and explore potential resources
for their families.
While VA supports the idea of helping caregivers prepare for and
obtain suitable employment, their participation in a VA program of
vocational rehabilitation cannot be implemented without the enactment
of new legislation.
Question (2): Because 17 percent of applicants for these benefits
are parents of veterans, what is VA's long term plan in regards to
ensuring that veterans are cared for as they age and no longer can be
cared for by their families?
Response: VA works with the Department of Health and Human
Services' Administration on Aging on many initiatives, including
Veteran Directed Community Based Care, which allows aging and disabled
veterans to remain at home with assistance. In addition, VA has pilot
programs such as the Assisted Living Pilot, which allows eligible
veterans to be placed in Assisted Living settings that can provide a
level of care that is needed well before a veteran requires placement
in a skilled nursing facility.
VA will provide ongoing assistance and evaluation of caregivers as
they age to ensure appropriate assistance for the veteran as part of
the ongoing supportive home visit process.
Question 3: Can you provide us with an update on the eight
caregiver assistance pilot programs?
Response: VA concluded the eight Caregiver Assistance Pilot
Programs on August 31, 2009. The outcomes of the pilot programs have
guided our development of evidenced-based support programs and services
for family caregivers.
The outcome or current status of the eight Caregiver assistance
pilot programs includes:
1. REACH VA--Resources for Enhancing Alzheimer's Caregiver Health:
The REACH VA pilot was able to demonstrate a significant decrease in
caregiver burden, depressive symptoms, and impact of depressive
symptoms on daily life. Improved outcomes for veterans included a
decrease in reported troubling dementia related behaviors, and in the
potential for abuse as measured by caregiver frustration. There was
also a 2-hour decrease in the amount of time the caregiver spent on
duty, which represented a trend toward significance. The pilot
demonstrated improvement of veteran and caregiver quality of life.
VA is funding the ongoing implementation of REACH VA. Sixteen
(16) sites are currently trained in and are using REACH VA as
an intervention. VA is planning to expand REACH VA to all VAMCs
within the next 5 years. REACH VA is also currently being
adapted for use with caregivers of veterans with spinal cord
injuries and disabilities, and will be piloted with this
population later in 2011. A plan to adapt the program for use
with caregivers of veterans with traumatic brain injury is also
under review.
2. Transition Assistance Program (TAP): Findings indicate that as
caregiver satisfaction with TAP increased, self-efficacy increased and
caregiver burden and depression decreased. When coupled with the very
high rate of program satisfaction, this pattern suggests TAP
participation increased caregivers' ability to cope with the demands of
their roles. Veteran motor function was significantly linked to
caregiver satisfaction suggesting that as satisfaction with TAP
increased, so did veteran functional ability. These associations
occurred across TAP participants and non-participants alike. The pilot
did not demonstrate significant differences in resource utilization
linked to participation in TAP.
3. VA California Office on Caregiving:
a. VA Cares Caregiver Centers of Expertise
b. California Caregiver Resource Center
c. Powerful Tools' Caregiver Training Program
d. Building Better Caregivers
The pilot identified several new, potentially effective and
efficient approaches to providing support to caregivers.
General results of the pilot revealed good satisfaction with
the Powerful Tools Training (PTC) Course, the Building Better
Caregivers (BBC) Workshop, and the Tele-Educational
Conferences. Results continue to be collected for the PTC and
BBC Internet workshop. Use of the BBC Workshop demonstrated
significant improvement in stress, strain, depression, sense of
self-efficacy, and reduction of caregiver burden. Although
there was no demonstrated impact on health care utilization, it
is felt that additional data is required to demonstrate a
linkage and a longer period of follow-up beyond the 3-month
assessments (originally planned for 6 months) performed in
these studies would be needed to properly assess the effects on
health services utilization by the caregiver and the veteran.
Both the Building Better Caregivers Workshop and Powerful
Tools Training Course are under consideration for national
implementation.
4. Tampa and Miami VA Medical Centers Respite and Caregiver
Support Program Service: Veterans and caregivers using the pilot
respite programs at both Tampa and Miami VAMCs reported high levels of
satisfaction with services. Caregiver burden was significantly lower
after participation in the pilot respite programs than at baseline. The
caregivers at both Miami and Tampa reported significant improvements in
mental health and decreased caregiver burden. Decreased use of
inpatient services and shorter lengths of stays were both positive
outcomes at both Tampa and Miami after the respite program than at
baseline.
5. Communicating Effectively with Health Care Professionals: The
pilot did not demonstrate any significant impact on the caregiver as a
result of the workshop or written materials provided. In addition, the
pilot did not demonstrate an impact on veteran health outcomes, provide
measurable improvement in health care communication between the
caregiver or veteran and VA, or demonstrate a cost savings to VA as a
result of the intervention.
6. Telehealth Technology to Support Family Caregivers: The
participants (other than the wait list control group) all rated
``satisfied'' or ``very satisfied'' with the Health Buddy. However, the
pilot failed to demonstrate any impact on health care utilization and
caregiver depression and burden measures. This could be due to the low
number of participants or the inability of some participants to
complete post-baseline data.
7. Use of Caregiver Advocates: The pilot showed a positive impact
on the health care of the caregiver, the caregiver's ability to accept
assistance, and a decrease in overall stress or burden experienced by
the caregiver. This pilot provided one impetus for the creation of the
CSC positions at VAMCs.
8. Heroes of the Heart: The pilot's post-intervention scores seem
to suggest that caregiver burden was lowered 2 weeks following the
respite intervention, but the overall findings are not significant
enough to generalize for all respite interventions. The pilot also
found that geographic barriers present many challenges to providing
respite care and alternative respite options available in rural areas
are limited. VA is currently exploring alternate options for respite
care in rural areas.
Question 4: To what extent has the U.S. Department of Defense been
consulted to ensure seamless transitional caregiver benefits?
Response: VA has worked actively with DoD in developing VA's
Program of Comprehensive Assistance for Family Caregivers. VA maintains
a mutually beneficial working relationship with DoD and is assisting
DoD in its development of a similar program. Currently, VA is assisting
DoD in discussions with Easter Seals to establish a caregiver training
program for active duty servicemembers and their caregivers.
Additionally, VA maintains multiple programs that communicate and
liaise with DoD in the seamless transition process for veterans and
their caregivers. Federal Recovery Coordinators work actively with
servicemembers and their families as they transition from active duty,
while VA Liaisons work from Military Treatment Facilities to coordinate
transition to VAMCs where they are then assisted by OEF/OIF/OND Program
Managers and Social Work Case Managers, as appropriate.
Question 5: What sort of outreach has been conducted over the past
few months to spread the word about this program?
Response: VA is committed to ensuring that stakeholders are
informed of the benefits and services available to support family
caregivers and the veterans they care for at home. Veterans Service
Organizations and caregiver-focused non-governmental organizations have
been partners in outreach efforts on the expanded VA services including
family caregiver benefits, respite, and other new or existing benefits
and services. Many of these organizations have actively hosted
information related to the Caregiver program authority in P.L. 111-163
in their publications and on their Web sites. In collaboration with VA,
these organizations have also included direct online links to the new
Comprehensive Assistance for Family Caregiver program application.
Multiple national press releases and media interviews have resulted in
the posting of information about VA caregiver benefits and services and
the application process in multiple venues. VA's caregiver information
is also posted on the main VA Web site.
The Caregiver Support Program established a toll-free National
Caregiver Support Line (1-855-260-3274), which opened February 1, 2011,
at the Canandaigua VAMC campus. This Support Line is available to
respond to inquiries about the new caregiver services associated with
P.L. 111-163 and to serve as a resource and referral center for Family
Caregivers. The Caregiver Support Line provides referrals to local VAMC
CSCs, VA, and community-based resources. The Support line also provides
emotional support to family and general caregivers. The Support Line is
staffed by licensed social workers and has received more than 12,000
calls since it was established.
In addition to the Caregiver Support Line, the Caregiver Support
Program launched a new Web site on May 31, 2011, www.caregiver.va.gov,
which provides a wealth of information and resources for veterans,
families and the general public. The Web site receives more than 1,000
visits daily with each visitor reviewing more than six separate pages
on the Web site per visit.
The Caregiver Support Program has provided multiple national
education and training events to VA staff throughout the country and to
a wide range of Federal, State, and local organizations. Within each
medical center, CSCs have contacted veterans known to their medical
center who may be eligible for the Program of Comprehensive Assistance
for Family Caregivers. In addition, CSCs have contacted veterans who
receive VA's Aide and Attendance benefit who may be eligible for the
Program of Comprehensive Assistance for Family Caregivers to provide
information on applying for the Comprehensive Program and its benefits,
and also to provide support and assistance with other benefits and
services.
Question 6: Can you provide more information regarding the Peer-
Support Mentoring Program?
Question 6(a): Is this the same program as the Caregiver Support
Advisory Board that is being implemented at the Syracuse, NY,
Department of Veterans Affairs (VA) Medical Center, as indicated by Ms.
Cheryl Cox?
Question 6(b): Will this program be required at all VA Medical
Centers?
Question 6(c): What would this Board do?
Response: VA strongly endorses peer-support mentoring and is
facilitating the creation of such programs at its facilities. According
to the National Alliance for Caregiving's 2010 survey of caregivers,
more than 45 percent of caregivers reported seeking most of their
information and support from other caregivers, peers, and online
resources. VA is in the process of developing a Peer Support Mentoring
Program to harness the power of these relationships and provide a forum
and a network of peers who can support and learn from one another. More
experienced caregivers will be matched with newer, less experienced
caregivers. Peer mentors will be provided with training and ongoing
support as they work with caregivers of veterans. Peer mentors can also
be bridge builders for caregivers by empowering them to form new
supportive relationships and linking them to resources available within
VA and the community. We have researched many peer programs both within
VA and in the community, allowing us to identify best practices. We
will work with caregivers to develop this program and integrate these
best practices in the final design of the Peer Mentoring Program. The
Caregiver Support Program plans to train the first group of peer
mentors by the end of 2011.
A separate initiative is the creation of local Caregiver Advisory
Boards, which VA anticipates will support education of and
collaboration with veterans, caregivers and VA staff; support the
National Caregiver Support Program's mission and goals; and recognize
National Family Caregiver Month by providing assistance with an annual
event each year. The successful implementation and ongoing support of
caregiver services mandated in P.L. 111-163 will be supported by these
Boards. In addition, the Boards will support VA in its recognition of
the significant contributions caregivers make in caring for veterans,
which allows them to safely remain in their homes. VA is working to
establish a Caregiver Advisory Board at each VAMC through the CSCs, to
ensure compliance with the Federal Advisory Committee Act and any other
applicable policies and laws.
Moving Forward
Question 1: Obviously VA did not meet the timelines set forth in
P.L. 111-163 concerning the submission of the implementation plan or
the actual implementation of the law.
Question 1(a): Moving forward, would you tell the Committee what
your next steps are?
Response: VA's next steps are to continue refining the current
processes recently developed under the new law and the Interim Final
Rule. Part of the refinement process involves reviewing the public
comments submitted in response to VA's Interim Final Rule published in
the Federal Register on May 5, 2011. VA will determine an appropriate
response and related actions to these comments while also moving
forward with planned expansions to VA's existing caregiver services and
identified best practices. VA will host focus groups with caregivers,
professionals, and stakeholders to review current services and
resources and to plan for future services and resources. VA is
currently reviewing the workload and performance of the CSC at each
VAMC to determine if a second full-time CSC is required.