[Senate Hearing 107-96]
[From the U.S. Government Publishing Office]
S. Hrg. 107-96
THE NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM ITS IMPACT ON IDAHO
=======================================================================
FORUMS
before the
SPECIAL COMMITTEE ON AGING
UNITED STATES SENATE
ONE HUNDRED SEVENTH CONGRESS
FIRST SESSION
__________
TWIN FALLS, ID, MAY 29, 2001
LEWISTON, ID, MAY 30, 2001
CALDWELL, ID, MAY 31, 2001
IDAHO FALLS, ID, JUNE 1, 2001
__________
Serial No. 107-6
Printed for the use of the Special Committee on Aging
U.S. GOVERNMENT PRINTING OFFICE
74-366 WASHINGTON : 2001
_______________________________________________________________________
For sale by the U.S. Government Printing Office
Superintendent of Documents, Congressional Sales Office, Washington,
DC. 20402
SPECIAL COMMITTEE ON AGING
LARRY CRAIG, Idaho, Chairman
JAMES M. JEFFORDS, Vermont JOHN B. BREAUX, Louisiana
CONRAD BURNS, Montana HARRY REID, Nevada
RICHARD SHELBY, Alabama HERB KOHL, Wisconsin
RICK SANTORUM, Pennsylvania RUSSELL D. FEINGOLD, Wisconsin
SUSAN COLLINS, Maine RON WYDEN, Oregon
MIKE ENZI, Wyoming EVAN BAYH, Indiana
TIM HUTCHINSON, Arkansas BLANCHE L. LINCOLN, Arkansas
PETER G. FITZGERALD, Illinois THOMAS R. CARPER, Delaware
JOHN ENSIGN, Nevada DEBBIE STABENOW, Michigan
JEAN CARNAHAN, Missouri
Lupe Wissel, Staff Director
Michelle Easton, Minority Staff Director
(ii)
C O N T E N T S
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Page
May 29, 2001
Chronological List of Witnesses
Richard Juengling, Acting Director, Idaho Commission on Aging,
Twin Falls, ID................................................. 2
Richard Boyd, Director of the Office on Aging and Adult Services,
on the College of Southern Idaho Campus........................ 9
Dan Norton, Caregiver............................................ 13
May 30, 2001
Chronological List of Witnesses
Kay Wilson, Program Secretary, Area Agency on Aging.............. 20
Bobbie J. Sailor, Acting Director, Idaho Area One Agency on Aging 21
Kenneth C. Wilkes, Program Operations Manager, Idaho Commission
on Aging, Boise, ID............................................ 27
May 31, 2001
Opening statement of Senator Larry Craig......................... 41
Chronological List of Witnesses
Hon. Michael K. Simpson, A Representative in Congress from the
State of Idaho................................................. 42
Linda Carpenter, Caregiver....................................... 43
Russ Spain, Director of Area Six, Agency on Aging in Idaho Falls,
ID............................................................. 46
Kenneth C. Wilkes, Program Operations Manager, Idaho Commission
on Aging, Boise, ID............................................ 47
Edwin Walker, Director of Program Operations and Development
Group, Administration on Aging, Washington, DC................. 49
June 1, 2001
Chronological List of Witnesses
Robert Lundblade, a caregiver.................................... 64
Russ Spain, Director of Area Six, Agency on Aging in Idaho Falls,
ID............................................................. 68
Kenneth C. Wilkes, Program Operations Manager, Idaho Commission
on Aging, Boise, ID............................................ 70
(iii)
THE NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM ITS IMPACT ON IDAHO
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TUESDAY, MAY 29, 2001
U.S. Senate,
Special Committee on Aging,
Twin Falls, ID
The committee met, pursuant to notice, at 10:02 a.m., at
the Department of Health and Welfare, 601 Poleline Road, Twin
Falls, ID, Lupe Wissel presiding.
Ms. Wissel. Good morning. I would first of all like to
thank all of you for being here today to the forum that is put
on by the Senate Aging Committee. My name is Lupe Wissel and I
am the staff director. I work for Senator Craig. Senator Craig
is still the chairman until June 5. And so today we had planned
to come to Idaho and hold hearings on the new Family Caregiver
Program. Senator Craig feels that this is very important. This
is a new addition to the Older American Act. And he wants to
make sure that the program is being implemented and that the
program does what Congress intended for the program to do.
There were various roundtables that took place prior to the
reauthorization, and because of what Congress heard from
caregivers, he felt it was very important that we now get out
to the States and take a look at how the program is being
implemented.
I want to first of all introduce staff members that are
here today. And let me see, Jeff Schrade, our communications
director. He has been traveling the State this week. Janine
Scott to my right. Lisa Kidder, also right here. Many of you
already know Lisa from Boise. And Janine, well, we adopted her.
We decided she is from Shoup, ID. Then, of course, you are
going to hear from the folks that are here to testify today.
Dick Juengling, to my left, he is with the Idaho Commission on
Aging, Acting Director. Dick Boyd, the director at the AAA here
in Twin Falls. AAA is the Area Agency on Aging. Mr. Dan Norton,
who will be speaking as the caregiver.
Let me tell you a little bit about what will happen here.
We will have each one of the witnesses speak, and then after
they finish with their testimony, we will have them all go
through their testimony. Once they all finish the testimony, we
will allow for questions for the panel. You have some cards on
the table, you can go ahead and write your question. We will
read the question and have whoever you want the question
directed to, answer the question.
Once we complete the forum, then we will do a short break,
come back to the room, and then we want to talk to you about
the Senate Special Committee on Aging, the agenda, what we have
been doing and where we are going. We have Lisa and Janine who
will be speaking about the issues that they are responsible for
on health care, Social Security, prescription drugs, and
Medicare. We will also take questions that you may have in
regards to those issues.
Before we get started, I want to thank Mike Matthews and
Leanne Farland for all their work. And I want to also thank
Linda Norris that is here from Senator Crapo's office. We have
Charlie Barnes and Linda Copen, I believe, from Congressman
Simpson's Office, I want to thank them for being here today. We
have also a great, great commissioner here with the Idaho
Commission on Aging. Helen Arnold is here this morning. Thank
you, Helen.
We will now get started. We would like to start with Dick
Juengling with the Idaho Commission on Aging.
Dick.
STATEMENT OF RICHARD JUENGLING, ACTING DIRECTOR, IDAHO
COMMISSION ON AGING, TWIN FALLS, ID
Mr. Juengling. Thank you, Lupe. It is a pleasure to be able
to speak this morning about the Family Caregiver Program. We
feel this is an important program for the State of Idaho, and
we look forward to implementing it successfully over the next
year.
I would like to talk briefly about the process that we went
through to get the program established and get it up and
running in a fairly quick period of time, and I would also like
to comment a little bit about the assistance and conversations
that we have had with the Administration on Aging in the course
of this process of getting set up.
You may or may not know that the State of Idaho will
receive about $564,000 for this program. We first got notice of
the written guidance from the Administration on Aging on
January 17. And about a month later, on February 20, was when
we actually got the notice of what that amount of money was
going to be. At that point in time, we began internally
discussions on how we would implement this program, and brought
to our commissioners in the middle of February, on February 15,
before we actually had the notice of how much money we were
going to get, a plan for how we would put this together and
carry it out around the State.
One significant piece of that plan was to develop a small
work group that could help guide us through the process of
developing that plan. That work group was made up of three
family caregivers, one of our commissioners, an area agency
director, a representative of the Alzheimer's Association, a
Native American and Hispanic representative. That group met
twice in late February and again in the middle of March.
And in the first meeting, we just brought people up-to-date
on the amendments to the Older Americans Acts and the Family
Caregiver Program that was included. We also in the course of
that meeting had a telephone conference call with the regional
administrator for Administration on Aging to discuss the
questions that people had about how this program could be put
together. And actually we received some follow-up
correspondence addressing some of those questions later on.
During that meeting we also had a presentation on grandparents
raising grandchildren, and we heard some of the personal
experiences that caregivers could share with us about what it
was like to attempt to help family members as they were aging.
The second meeting of that group is, I am sorry, is in
March. I do not have the date here. Again, we went over various
questions that came up as the area agency directors were
discussing how they would implement this at the local level. We
talked about some of the cultural caregiver issues that were
presented by Native American and Hispanic representatives on
the work group. Discussed some of the most critical services
that were needed in the local communities, and began reviewing
a draft application packet that we had prepared for the area
agencies to submit to us for their portions of the funding.
That packet was finalized and sent to the area agency directors
and discussed with them in a conference call on April 4.
Those applications will require that the area agency
directors tell us what programs they intend to fund at what
levels and how they will carry out the purposes of the
caregiver program, and those applications are due from them to
us on June 1. So we at this point know a little bit about what
people are proposing, but we do not have their final
applications in yet.
At the time we were doing this, it was our understanding
from the Administration on Aging that we could put together the
mix of programs that would best serve the folks at the area
level in the State of Idaho. And at that point in time, people
saw the following as being their primary needs in their areas:
Information and assistance to caregivers; case management to
assist them in caring for their loved ones; and respite care,
which for any who do not know is a service that provides a
brief rest for the individual who is giving caregiving so they
can get their breath, take care of business that they may need
to take care of that would require them being away from the
individual that they would normally be caring for. Our intent
was to have those applications into us by June 1, and be able
to award funds by July 1, so that those programs could begin
very shortly after July 1.
We moved quickly to design the program and implement what
we thought was a model approach. We have received phone calls
from a number of other States inquiring what we were doing, and
we got the impression from those phone calls that we are ahead
of many in that implementation curve. We felt that we had a lot
of helpful input from the Administration on Aging staff,
particularly from the regional office in Seattle. I attended a
all-day conference there on April 25, and a portion of that
conference involved a live television link with folks in the
Washington office of AOA. I went away from that understanding,
most significantly, that they were interested in providing us
with maximum flexibility to carry out the programs in ways that
best benefit caregivers in Idaho. I was very, very pleased with
that approach, and thought that that was in concurrence with
where we were heading.
What I found out late last week is that we may need to
change course somewhat. There are two things that raise
problems for us. One probably would not mean anything to any of
you, but it has to do with how we match these Federal funds.
There is a requirement that we put our own resources into this
program, not just the $500,000 in Federal funds. And we used to
have the flexibility of being able to match all of the various
programs that we provide under Title Three of the Older
Americans Act with just sort of a pool of matched money. We did
not have to have a specific amount set aside for our case
management or a specific amount set aside for information and
assistance or any other specific programs under Title Three.
But now we learned late last week that we have to have a
specific matched amount for this family caregiver amount, and
it cannot just be pooled along with the rest of our Title Three
matched money. I do not yet know whether that creates a
significant problem for us. It does reduce our flexibility
dramatically, and that troubles me some.
The other thing that we learned very late in the week last
week is that under the program there are five categories of
programs, and we understood and we were actually told by
Administration on Aging that we would be able to implement a
mix of programs that would best suit the caregivers in the
State of Idaho. And we passed that along to the area agencies.
We said you cannot just fund one program out of that, you have
got to have at least two of those things, but you do not have
to fund all five. And the word that we got on Thursday of last
week was that we must carry out programs in all five of those
categories. That would be with Federal funds or with State or
local funds, but nevertheless, it does create a bit of a
problem for us as contrary to what we have understood and been
told by the Administration on Aging until now, and it is
contrary to what we told the area agencies about the way it
would be carried out.
I will be interested to see how the Administration on Aging
pursues this issue. I have written to them and requested that
they return to the more flexible approach that they started out
with. Whether there is any chance they will do that, I do not
know.
Again, thank you, Lupe, for allowing me to speak today.
This is a great opportunity. We are excited about this program.
It is badly needed in the State of Idaho, as I am sure it is
throughout the country. Caregivers in Idaho have tremendous
needs and have been overlooked and neglected for a long time
because there simply were no programs or funding available to
serve the needs of caregivers.
[The prepared statement of Mr. Juengling follows:]
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Ms. Wissel. Dick, thank you. You are right, and again, that
is why Senator Craig wanted to make sure that we came to the
State to hear how the program is working out, if it is already
implemented, or what stage it is at, and any barriers to the
implementation of the program.
But on Thursday, as you know, we have the hearing that
Senator Craig will be chairing, and that will be in Caldwell.
At that time, I understand that we will have someone from the
Administration on Aging present to provide testimony. Those
questions, those issues, you brought up may be some questions
that he may need to ask at that time.
So thank you again for agreeing to be here today and for
the information.
We will move on with the testimony. As I mentioned earlier,
we will come back for questions once we finish with all
testimony.
Now we have Richard Boyd, and he is the director at the
Area Agency on Aging here in Twin Falls. We will now hear from
him. He is going to give us his perspective and where his area
is on the family caregivers implementation.
So, Dick, thank you.
STATEMENT OF RICHARD BOYD, DIRECTOR OF THE OFFICE ON AGING AND
ADULT SERVICES, ON THE COLLEGE OF SOUTHERN IDAHO CAMPUS
Mr. Boyd. Thank you, Lupe. Good morning. I appreciate the
opportunity to testify this morning on the National Family
Caregivers Support Program. I am a little bit surprised to what
Dick had to say because we are changing horses in the middle of
the stream, it looks like.
The Office on Aging at the college serves the eight
counties of South Central Idaho. There are approximately
165,000 persons residing in an 11,000-square-mile area. Of this
number, 24,000 are over the age of 60. Twelve percent of the
over-60 population is estimated to be at or below the poverty
level. The eight-county area is qualified by definition as
rural.
I am going to focus the remainder of my remarks on the
process we used to develop the National Family Caregivers
Support Program. We certainly found value in all the service
options available in the program. Interestingly enough, the
same services were included in this area's identification of
service need. Service need was identified by caregiver contact
with this office and agency and through staff experience with
the target population. Considering limited funding available,
we present the following service priorities: Information
services; case management; and intensive respite. We expect to
improve caregiver recognition of the serviceable moment,
defined as that point at which the caregiver is providing
extensive care and have identified themselves as the caregiver.
This is necessary before institutional placement is the only
option they believe is available to care for a loved one.
Information services will be allocated $17,486. This will
involve reaching out to potential consumers through increased
public presentations, television and other electronic media to
educate the community regarding the challenges of intensive
caregiving and the services available to provide critical
relief to the caregiver.
Intensive respite services have been identified as
critical, and as such will receive the majority of our funding,
$52,000. This service will provide short periods of relief or
rest for 24-hour live-in caregivers that are caring for family
members who have more intense needs than the current volunteer
respite programs are able to provide. The priority to receive
the intensive respite services will be spousal caregiver or an
adult child caregiver. The services will focus on supervision,
personal care, and hands-on type of care. Flexibility of
service will provide service during nontraditional hours, such
as evenings and on weekends, in addition to normal day service.
The service may be provided either in home, adult day care, or
institutional respite for an overnight stay on an intermittent,
occasional, or emergency basis.
We propose that intensive respite services be secured
through a voucher system with the units of service managed by
the case manager, develop vendors of service brought delivery
in lieu of sole source contractors. Multiple vendors will
increase the likelihood that at least one of the vendors will
be able to provide service instead of one contractor that may
or may not have staff available. The caregiver will determine
how much respite is needed at any given time, when to use the
service, and if in-home adult day care or institutional respite
is the most appropriate. Consumers will be allowed to bank the
respite hours. A sliding fee scale will be used to determine
what, if anything, the caregiver will pay. Caregivers able to
contribute must be encouraged to do so.
Case management service will receive $13,500. This will be
used to educate older persons or their caregivers who may be
experiencing diminishing functioning capacities to serve as
options available and link the caregiver to efficient care
providing communication of service among the approved
providers. The case manager will authorize services and manage
respite hours allocated to their client or their consumer.
Thank you for the opportunity to testify before you today.
This is a wonderful program and much needed. However, the
current funding just scratches the surface. The National
Association of Area Agencies on Aging estimate that the current
allocation will provide $5 for every caregiver in the United
States.
One final thought. I really appreciate the flexibility that
has been associated with implementing this program to this
point. The issues are universal, yet each area has been
afforded the opportunity to develop a caregiver program that
will best meet the need of the family caregiver, and in this
case, rural Idaho.
Thank you.
[The prepared statement of Mr. Boyd follows:]
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Ms. Wissel. Richard, thank you very much for providing us
with your testimony today.
Next we are going to hear from a caregiver who provides the
caregiving services. Dan Norton, we are looking forward to
hearing from you.
STATEMENT OF DAN NORTON, CAREGIVER
Mr. Norton. My wife and I moved down here in 1994 to take
care of three of our parents, and it has been quite an
experience. My dad died a year ago next month. But we only
began to get assistance from Linc just a little over a year
ago. Otherwise we have done this on our own. We bought a large
house out on the far side of Filer so that we would have room
for them and ourselves. And it has been interesting, to say the
least.
My mother has Alzheimer's, high blood pressure, and
diabetes, but otherwise she is pretty good, you know, get
around good. My wife's mother fell and broke her hip 2 years
ago, so that has slowed us down tremendously as far as doing
anything. We have no free time, except we get 4 hours possibly
three times a week where somebody comes in and grandma sits, as
we call it. And so that gives us time to go out and shop and
possibly run some errands and have lunch, which we usually do.
And today is one of those days. And then I have to go to a
funeral in Hailey. But it is something that we felt was
necessary. And we know it is working out. It has prolonged
their health, or their lives, I should say. My mother is 93 and
my mother-in-law is 95, and my dad would have been 100 in
November. He died in June just prior to that, so they had
pretty good lives.
We have been in public service. I was in law enforcement
forever it seemed, and my wife ran a day care center in Hailey,
so we have had a lot of experience, but it has just been hands
on, no professional help. Nobody has complained yet, so I guess
we have done all right.
It is something I would not recommend unless you have got a
lot of patience. And my wife has most of the patience in our
family. So that is about it.
Thank you.
Ms. Wissel. Mr. Norton, thank you for sharing, the
information with us. And that is why we are here and that is
why Senator Craig felt it was very important that we heard from
the caregivers because that is what the program is intended to
do. Provide the relief to the caregivers, because without the
caregivers, well, I do not know what any of us would do.
Mr. Norton. Well, the county or the State would be capable,
yes, but the main thing that we need is some time, you know. An
overnight, even a day. Because the way it is now, we can just,
just go do our shopping. And one of us has to be home all the
time, except when we do have a caregiver, so it is something
that if you get into this type of thing, you have to be
prepared for, losing your life basically. But we do not resent
it. We think we have done the right thing. So thank you.
Ms. Wissel. Thank you.
We have heard from the three witnesses that shared their
information with us. And now we will open the mike. And you
have cards. If you have any questions for any of the three
panelists up here, please do so. Jeff will go around and pick
up the questions, and he can go ahead and use the microphone
and ask the question.
Mr. Schrade. I think I see a few more people scribbling, so
I am going to read this first question.
This is for Dick Juengling. What are the five categories
that must be funded, referred to in the packet as required by
the Federal office?
Mr. Juengling. Let me make sure that I have them right. Mr.
Boyd has handed me a document, but I do not want to swear that
they are actually set out correctly there.
The five categories are: (1) information to caregivers
about available services; (2) is assistance to caregivers and
gaining access to the services; (3) is individual counseling,
organization of support groups, and caregiver training to
caregivers to assist the caregivers in making decisions and
solving problems relating to their caregiving role; (4) is
respite care to enable caregivers to be temporarily relieved
from their caregiving responsibilities; and (5) is supplemental
services on a limited basis to complement the care provided by
caregivers.
Mr. Schrade. Mr. Boyd, please clarify. Did you say the
average benefit per caregiver is $5?
Mr. Boyd. What they were saying was that this--was it 125
million that was allocated across the country? That equates to
$5 for every caregiver in the United States. Does not mean they
are going to get it.
Mr. Schrade. And a follow-up question for you. Explain
vendors and explain bank respite hours.
Mr. Boyd. OK. What they were doing with vendors as opposed
to a sole source contractor, there are vendors currently that
have been identified by Health and Welfare that do provide
these kinds of services, and they are throughout the valley. If
you get contractors, what we find is most of them are located
either in Twin Falls close by or in the Burley-Rupert area. And
when we get out into the rural areas, that is where we have the
problem.
Banking of the hours is meant that once it is determined
that these people can use respite hours and they qualify, they
are the most critical, they will have X number of hours they
can use when they deem it necessary.
Mr. Schrade. Another question for you. What defines income
eligibility?
Mr. Boyd. The State and the Federal have income guidelines
that we use, and it has to do with poverty, the level of
poverty.
Mr. Schrade. Is it at poverty or do you know?
Mr. Boyd. Well, we will be at poverty.
Mr. Schrade. At poverty level?
Mr. Boyd. I think we will be looking at 125 percent of
poverty.
Ms. Wissel. Mr. Norton.
Mr. Norton. Well, she had one. Excuse me.
Ms. Wissel. Oh, no, I thought you had a question.
Mr. Juengling, you mentioned that you were in the process
of or you thought that maybe by the 1, the money would go out
by June 1, by July 1, the program would be implemented. Where
are you at this point?
Mr. Juengling. What we had required was that the area
agencies provide us with their plans by June 1. We would then
go through those plans, make sure that they were meeting all of
the various requirements, and actually begin to make the money
available by July 1. Given what we see as a significant change
in guidance from the Administration on Aging, I honestly cannot
tell you right now whether we will still be able to meet that
July 1 deadline, because at least some of the proposals that we
have received or that we have already heard about that the area
for area, for example, does not address all five programs in
their proposal. So we may need to go back to the issue and make
sure that we have that adequately covered, unless AOA goes back
to what their prior position was on the issue.
Ms. Wissel. Mr. Juengling, another question for you. You
heard Mr. Norton talk about the need for that relief and just,
being able to get away even 4 hours. Now, how are you going to
prioritize, to make sure that those with the most need are
provided with the services? If they really need to get away for
a day or even the weekend, are you making some provisions for
that?
Mr. Juengling. We have not yet addressed that specific
question. One of the things that we have been working on for
some time is a means to prioritize a variety of services that
are provided through our agency, not just the National Family
Caregiver Program. And the purpose of that prioritization is to
see that those with the greatest need get moved to the top of
the list of clients to be served. We are doing that because it
is clear that there is not enough money, and there certainly in
the future will not be enough money to provide all the services
that all of the elderly in the State of Idaho need. We have not
yet worked at taking that prioritization system that we have
developed and converting that to cover caregiver needs. It will
not be difficult to do that, but we have not got to that step
yet.
It will be necessary to do that, I believe, because if you
look at the money that comes to the State of Idaho, there will
not be enough money to serve everyone. As I said before, we
have $564,000 coming to the State of Idaho, but when you start
splitting that up between the six area agencies that serve the
State, it becomes a little bit tricky. Mr. Boyd told you how
they are going to spend their money, or how they were planning
to. Mr. Boyd's agency is in a somewhat better position than
some of the other areas.
The various area agencies do not receive equal funding.
They receive funding based on a formula that takes into
account, among other things, age of residents and numbers of
residents. The result of that is that we have one area that is
only going to receive $57,000 total for this program, a couple
of others that will receive $77,000. The largest area, the area
three which serves the Boise and Treasure Valley area, which
obviously has about a quarter of the State's population, they
will receive almost $197,000. Even for them, the $197,000 would
not go far. So it becomes necessary to find a way to prioritize
service to those who are most in need. We will be pursuing
further development of that prioritization system that we are
working on in order to apply it to this program as well.
Ms. Wissel. Thank you.
Mr. Norton, as you know the National Caregivers Support
Program will provide relief and information to caregivers this
year for the first time. How will this program be most
beneficial to you as a caregiver?
Mr. Norton. Just giving us time to go somewhere, you know,
maybe, well, Jackpot or, just for instance, someplace where we
can go and we do not have to worry about what is happening at
home. Since they are our parents, it is a little different. And
also so we can relax and know that things will be good when we
get home. It is extremely important, because, like I say, we
have done this for 7 years without, pretty much respite help,
except for the 4 hours two times a week was, and now we are
getting sometimes three times a week. So that is 12 hours that
we get to go shopping, you know, and have lunch.
Ms. Wissel. You heard about the five categories,
information assistant, case management, respite, supplemental
services. Out of all of those five categories, which would you
see as the most important to you as a caregiver?
Mr. Norton. Time off, as far as I am concerned. As far as I
am concerned, that is it.
Mr. Juengling. Let me see if I could respond. When we had
the meetings in Boise, where we brought the folks in from all
over the State, respite by and large was the number one issue,
by and large.
Ms. Wissel. And Dick, I appreciate you sharing that,
because I heard that in Idaho as well as the round tables that
took place around the country when this program was being
discussed. That was the number one need, which is the relief
that the caregivers so much need.
Any other questions from the audience that you may have for
the panelists up here?
Unidentified speaker. Do you have an idea of the number of
family caregivers that are in Idaho now?
Mr. Juengling. It seems to me that someone came up with an
estimate, and I honestly do not remember what it was, but it
was purely an estimate. It was based on some national figure
that was extrapolated down to Idaho's population. And I do not
remember what that was. Not a hard number by any means.
Ms. Wissel. Ma'am?
Unidentified speaker. OK. For those of us who do not fall
below poverty but are below having sufficient funds to give
care, where do we go for it?
Ms. Wissel. Mr. Juengling, could you answer that question?
Mr. Juengling. Well, to a certain extent, those decisions
will be made by the local area agency when they set their
priorities. If they have a income requirement, it may be that
you will have to cost share; in other words, you may have to
pay for a portion of that service in order to be eligible.
Again, it may also depend upon the level of need that is out
there. If there is an overwhelming demand for the service,
those who are dealing with the most difficult situations and
those living in poverty may be a higher priority. I do not
think anybody has actually figured out where the cutoff is
likely to be because nobody has really been able to identify
just how many people might qualify or seek this service.
Mr. Boyd. I could just expand on that. Here in our area, I
think we are looking at need as primary, then look at finance,
if you are able to pay part of it, but I would not see you
being thrown out because you had above poverty level. It would
be strictly on need. We have so many people that are primary
caregivers that if we do not give them some assistance, they
are going to need help also, and then we have lost everything
we had in their home. And one of the things that we find on an
isolated basis is that we start having problems, and adult
protection has to get involved because the caregiver is so
tired and so totally stressed that then they start abusing the
person that they are caring for.
Ms. Wissel. Very true. Any other questions?
Here is one.
Unidentified speaker. I have a question for Mr. Boyd. You
mentioned vendors were available against contract people. What
would be your criteria for judging and, you know, making sure
that the vendors are able to take care of such circumstances?
Mr. Boyd. Let me just answer this way. What we looked at
when we saw this--and understand this is a new program, it is a
new concept. There are current vendors that are with the Health
and Welfare on the waiver program. They have already been
looked at. We do not know whether those same vendors would be
ones that we could utilize. But the idea is that we are
certainly going to make sure, if we get a vendor on our own,
that there is a background done and that they, in fact, can do
the job before we are going to hook up with them. So it is a
new concept, it is a new rule, and I cannot really have the
answers. Ideally we would use vendors that are already in place
that have the background and have a proven track record.
Ms. Wissel. Any other questions?
Well, I would like to, on behalf of Senator Craig and the
Senate Special Committee on Aging, thank the three of you for
agreeing to be here today for providing the information that
you did. It is very helpful to hear from you because this
information will be recorded, we take a look at it again, the
Senator will review all this information again. And as we move
forward, it is very important that we hear from the people
themselves. So we are doing this as part of the Older Americans
Month. May is Older Americans Month. We had the family
caregiver hearing in Washington, DC., on May 17, we plan to do
this same forum throughout the State. We have our hearing that
will be chaired by Senator Craig in Caldwell on Thursday, so
all of you are invited to attend that hearing. It should be a
very interesting one because this is such an important program.
I thank all of you for being here, and thank you for providing
the information.
We will now conclude the forum. We will now take a few
minutes, maybe a 5-, 10-minute break, we will come back, and
then we will talk about Senate Special Committee on Aging and
any questions you may have. We have Janine and Lisa that will
provide you information on different issues they have been
working on, and so thank you.
[Whereupon, at 10:46 a.m., the committee was adjourned.]
THE NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM: ITS IMPACT ON IDAHO
----------
WEDNESDAY, MAY 30, 2001
United States Senate,
Special Committee on Aging,
Lewiston, ID
The committee met, pursuant to notice, at 1 p.m., in the
Clearwater Snake River Room, Williams Conference Center,
Lewiston, ID.
Ms. Wissel. We want to go ahead and we will begin this
forum. We have the panel, it's all ready and staff is here. So,
please let me introduce the panel first.
We have Ken Wilkes. And Ken Wilkes is with the Idaho
Commission on Aging, and he is the support service manager. I
call him the godfather of older Americans. You know, he's been
there for a long time. He's gone through a few re-
authorizations.
Then we have Bobbie Sailor, and Bobby is interim director
of the area Agency on Aging in Coeur d'Alene. And then I
understand you hired a director that starts on Friday, and
that's Pearl Prichard. And, so, you are going to be speaking on
behalf of the area agencies. And then we have Kay Wilson, and
Kay is a caregiver.
So, and right here to my right, we have Janine Scott. She's
with the Senate Special Committee on Aging staff in DC, and she
handles pension and health care issues. She's an attorney, and
she's been doing quite a few hearings this year as well. To my
far right, we have Lisa Kidder, and Lisa has worked for Senator
Craig for a number of years doing health issues. Now she is
with the Senate Special Committee on Aging. Both of them have
been very busy developing a number of hearings on programs
under the Older Americans Act, and other health issues, such as
prescription drugs, et cetera. My name is Lupe Wissel, I'm the
staff director with the Senate Special Committee on Aging. And
I work directly for Senator Craig. We held the family caregiver
hearing on May 14. Senator Craig called the hearing, to
celebrate the Older Americans Month and also to make sure that
the money was being used to meet the intent of Congress. And
that's why we are here today, and we're holding these forums
throughout the State to hear from the State representative from
the area agency, the caregivers, and see where they are in this
process. And hopefully, that we get insight as to, whether it
is working; if it is going the direction that it was intended
to go; and is it doing what it was intended to do.
With that, we will go ahead and have the panelists present
their testimony. Once they finish with the testimony, we will
then allow for questions. You can ask questions to any of the
three, and then we've got a few questions ourselves. But we
want to allow you to ask those questions. You have, I believe,
some cards so that if you have a question, write it down and
then you can come forward to the mic and read it, or we can
pick it up. We can have Lisa or Janine pick them up and get the
question from you and then have it asked to the panelists. So,
with that, why don't we start with Kay Wilson, the caregiver.
We'd like to hear from you and maybe share your experience with
us. Could we get the microphone to Kay, please? Thank you.
STATEMENT OF KAY WILSON, PROGRAM SECRETARY, AREA AGENCY ON
AGING
Ms. Wilson. As she said, I'm Kay Wilson. I also work for
Area Agency on Aging in area one. I'm the program secretary.
I'm doing a talk on grandparents raising grandchildren. I'm one
of the 3.2 million grandparents in the United States who have
custody or have assumed a temporary role in responsibility for
raising grandchildren. The ages of my grandchildren that live
with me are eight, seven and two, and I have eight altogether
and three great-grandchildren. I say temporary responsibility,
because I keep hoping that my twenty-seven-year-old daughter
will turn around and become the full time responsible mother.
The frustration and emotional roller coaster that I have
been on with the grandchildren also includes 9 years of being a
caregiver for my mother, who passed away last May at 99 years
of age. I was that sandwich generation they talk about that
added grandparenting on top of caring for my mother. The
frustrations have been many, wondering who was going to take
care of the now 8 year old when he was a few months old on
Monday when I had to go to work and hadn't seen his mother
since Friday evening, when she was just going to the store.
Seeing all three children as babies in dirty clothes and soiled
diapers all day when there were washing facilities right there.
The frustration of calling child protection and personally
taking pictures into their office because of the filthy
conditions they lived in and have the child protection tell me
they aren't in imminent danger, can't do anything. Several
times kicking daughter and grandchildren out of the house to
have her come back in 3 to 6 months later with dirty, crying
grandchildren begging me to let them stay because that is only
stable place they have in their lives. The anger that goes
along with feelings of helplessness when two little boys tell
me they hurt on their back and legs to find open sores from
their waist to the back of their legs, so sore that they can't
sit in the tub so I can get them clean. That time I took them
to the doctor and found that they had scabies. The doctor took
pictures and reported to child protection. I also called the
police, because I wasn't going to give them back to their
mother but was told they could do nothing, I had to give them
back. That trip, even though the boys were on Medicaid, cost me
$45.00 for the doctor visit and $40.00 for medicine. I couldn't
use their Medicaid, because I wasn't the one that was on the
insurance. Emotionally, it is very draining.
I thought the school system would be able to help me, but
as much as principal, teachers, and counselors have tried,
their hands are tied. The 8-year old second grader is reading
above his grade level as well as the 7-year old is reading
above his grade level. They are very bright children. The older
boy has a serious anger problem with regards to his mother and
father. That may take a doctor's intervention. The younger boy
is taking after mother with an attitude problem that he doesn't
have to do what his elders ask him to do. The 2-year-old
granddaughter I fear for every time mother gets involved with
another man. She is a beautiful, bright and happy little girl.
What things could happen to her in the settings her mother
takes her into gives me nightmares.
I would take these children if health and welfare stepped
in, but I am also planning on retiring in 3 years. And, for
once in almost 47 years, I can go and do as I want to and care
for only myself. I was a part-time caregiver of my grandmother
who lived with my family before I was out of high school.
To get custody of the children is almost impossible,
because their parents are still involved, partially. Though the
oldest boy is the only one who sees his father part of the
time, there is no child support from any fathers. Legally it
would be costly with no guarantee that I would succeed in
getting custody. Temporary custody would be the best I could
hope for, knowing that at any time if mother or fathers proved
they could raise the children, they would be able to take them
back.
The big questions facing me are financial, child care,
medical while I'm still working, and emotional. Can I begin to
raise grandchildren at age 62 by myself and hope that my good
health I now have continues? How much will it cost if the
oldest boy needs more counseling to deal with his anger
problems? How do I connect with daycare and costs while I'm
still working? Where and how do all the government systems
work? These are all questions that grandparents in these
situations will face. Getting grandparents through the system
when they have never asked for help like this before can become
the most stressful--almost more stressful than raising the
children.
We have a chance to help not only the grandparents but also
the new generation that will be taking care of us in later
years. If there are going to be more grandparents raising
grandchildren in the future, as predicted, we, as an agency,
need to be the best informed and willing to walk these
grandparents through all the hoops in order to make this a less
stressful thing. Thank you.
Ms. Wissel. Thank you, Kay. We will now hear from Bobbie
Sailor. Bobbie.
STATEMENT OF BOBBIE J. SAILOR, ACTING DIRECTOR, IDAHO AREA ONE
AGENCY ON AGING
Ms. Sailor. Hi. I'm Bobbie Sailor, acting director, Area
Agency One in North Idaho, and I've been with the agency since
1993. Thank you for the opportunity to discuss Area One's
efforts to implement the National Family Caregivers Support
Program. Area One on Aging is comprised of five northern
counties in Idaho; Bonner, Boundary, Shoshone, Benewah, and
Kootenai.
In order to assess the needs of family caregivers, the
agency conducted a written survey which was completed by our
advisory council members, a local hospital caregiver support
group attendees, and attendees at our agency annual conference.
The following services, identified as a need, Area One will
focus on implementing. Category two, which is assistance
service, this includes information and assistance providing
current information on opportunities and other available
services and linking individuals to opportunities and available
services. And case management, assessing the needs, developing
care plans, authorizing services, coordinating the provision of
services among the providers and follow up and reassessment, as
required.
Our plan is to develop a resource data base. Case managers
will assist in completing the required in-home assessment and
assist the caregiver in assessing services offered by formal
service providers.
Another category that we're putting funding into,
proposing, is the respite service. This will be used to provide
respite care to enable caregivers temporary relief from their
caregiving responsibilities. It may be in the form of in-home
respite, adult daycare respite, or institutional respite for
the overnight stay on an intermittent, occasional or emergency
basis.
Our plan is to develop a competitive bid process to
identify licensed facility providers available in each of our
five northern counties and a daily rate to be paid in order to
provide up to 7 days of respite in a twelve-month period. Paid
respite would be considered a cost-sharing program utilizing
the current Idaho Commission on Aging sliding fee scale. Agency
case managers would complete the in-home assessment, identify
respite as a need, and assist the family in making arrangements
for the paid respite with the closest provider. The family
would pay their cost-sharing portion, if appropriate, directly
to the facility, as determined by the case manager and the
agency's current agreement with that provider.
Supplemental services, legal assistance, is another area
we're proposing. Providing assistance for family caregivers
with specific legal issues, such as emergency guardianships or
other legal matters. This would be an expansion of legal
services with our current service provider, and it would not
duplicate services currently available.
Information and assistance for grandparents is the last
area that we're proposing to develop a data base of information
regarding eligible services for grandchildren and how to access
those services. We would provide assistance for grandparents in
accessing the services, walking them through the maze.
Our primary objective is to reach and assist as many
caregivers as possible. In order to notify the public of
available resources, we would see that we would have to do
local newspaper articles as well as presentations to
organizations and community organizations.
I appreciate this opportunity to share our progress in
Northern Idaho on the implementation of the National Family
Caregiver Support Program, and I would be happy to address any
questions. Thank you.
[The prepared statement of Mr. Sailor follows:]
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Ms. Wissel. Bobbie, thank you. And, as I said earlier,
we'll hold the questions till right after Ken's testimony. Ken
Wilkes is with the Idaho Commission on Aging, he is the Support
Service Manager.
STATEMENT OF KENNETH C. WILKES, PROGRAM OPERATIONS MANAGER,
IDAHO COMMISSION ON AGING
Mr. Wilkes. Thank you, Ms. Wissel. Good afternoon, my name
is Ken Wilkes, program operations manager for the Idaho
Commission on Aging. I am appreciative of the opportunity to
testify this afternoon on the National Family Caregiver Support
Program.
My remarks will focus on implementation of the program here
in Idaho, including the service package and timelines for
beginning the delivery of these much-need services. I will also
comment briefly on the assistance and guidance we've received
from the Administration on Aging.
We received notification of Idaho's allotment of $564,300,
and our first written guidance from the Administration on Aging
on January 17, of this year, and we received our notification
of grant award a little over a month later, on February 20.
Soon after receiving the information from AOA, the Commission
staff began discussions about how we would implement the
program, and we prepared a power point presentation for our
upcoming Commission and area agency directors meeting, which
was held February 14 and 15. At the Commission's business
meeting on February 15, we presented a plan for the design and
implementation of the program and requested their support for
the plan. Our plan called for the formation of a small work
group that included three family caregivers, one of our
commissioners, one of our area agency directors, a
representative of the Alzheimer's association, and a Native
American and Hispanic representative.
Our work group met twice, once on February 28 and again on
March 14. At our first meeting, we covered the following: We
reviewed the 2000 Older Americans Act Amendments pertaining to
the new National Family Caregiver Support Program, and we also
reviewed the written guidance we had received from the
Administration on Aging. We also included a telephone call with
the Region Ten Administration on Aging administrator and staff
in Seattle to discuss questions regarding the program. These
questions were made official in a letter dated March 7.
We heard a presentation on grandparents raising
grandchildren, and the three family caregivers on our work
group shared personal experiences in their situation as a
caregiver.
In our second work group meeting, we focussed on a review
of concerns and issues raised by our six area agency on aging
directors. We also listened to a presentation from our Native
American and our Hispanic representatives to talk about some of
the cultural differences in caregiving. We had a discussion of
the most needed support services, and they were identified by
the three caregivers on our work group. And, finally, we
reviewed a draft application that our staff had prepared for
the area agencies to submit to us in order to receive these
funds.
The draft area agency application form was sent to the area
agency directors and discussed with them on a telephone
conference call April 4, before it was finalized and mailed in
mid April. These applications are due Friday for the review and
approval of the Idaho Commission on Aging.
Until we receive these applications, we will not know
exactly what service packages the area agencies are proposing,
however preliminary information indicates that area agencies
will be proposing to use the funds primarily for information
and assistance, case management, and respite.
I need to note here that the three caregivers in our work
group identified the following services as most needed;
respite, including adult daycare; caregiver education and
training; and support groups. They felt these were the services
that would most immediately and directly benefit them.
We plan to award funds to the area agencies by July 1, and
shortly thereafter services will begin. So, as you can see,
Idaho has moved quickly to design and implement a program that
we feel be a model for other States. We have received telephone
calls from a few other States asking how Idaho is planning to
implement the program, and it appears we are well ahead of the
implementation curve.
I would like to close by saying that our regional
Administration on Aging staff has been very responsive to
questions we have raised both in writing and by telephone. Our
active director attended a meeting in Seattle on April 25 that
included a video conference with Administration on Aging
central office staff in Washington DC. And, during that video
conference two presentations were made, one that addresses
reporting requirements under this new program and the other
provides information on caregiver programs already in existence
prior to the Older Americans Act Family Caregiver Support
Program. At the Seattle meeting, Administration on Aging staff
said they wanted to allow States maximum flexibility in
implementing the program to meet their own needs. In addition,
they have provided a list of frequently asked questions and
answers to those questions. The AOA website has also been
somewhat helpful, and a conference on the program is scheduled
for September 6 and 7 in Washington DC.
I would like to raise what I feel is a major concern with
the program, Ms. Wissel. The Administration on Aging has made
an interpretation of the law that it requires each area agency
to fund all five categories of services. This is a concern to
me and I would think to at least some of our area agencies.
And, particularly here in Lewiston, because area two receives
the smallest allotment under this program based on population.
Their total funding is a little over $57,000, and if they
spread that through the five categories of services, my concern
is that none of the categories will have been adequately
funded. And I'm not sure that that was the intent of Congress
as I read the law. So, I'd like to ask that you take a look at
this, because it is a concern, I think, that needs to be
addressed.
Another issue of some concern is a more restrictive
interpretation by AOA of a match than is applied to the rest of
title three. The interpretation they have made is that the
funding we used to match this program has to be money that is
currently being used to directly provide caregiver support
services, whereas with all the other programs under title
three, any State or local money that is received can be applied
to match the title three funding. So, I think that's another
issue that, I think we'll be able to work it out in Idaho,
because we do receive good support from our legislature with
State funding. As you know, we have the respite program, and
some of the current case management services are being provided
to caregivers.
On behalf of the Idaho Commission on Aging, I would like to
thank Senator Craig for bringing the Senate Special Committee
on Aging to Idaho and for the opportunity to testify here
today. As my testimony indicates, we are well on our way to
providing solid support for Idaho's growing number of family
caregivers. The goal of the Idaho Commission on Aging and its
six area agencies on aging is to provide the most needed
supportive services to family caregivers that will enable them
to continue to care for their family members in their homes and
prevent or delay more costly institutional care. We are
committed to meeting the congressional intent of this program
and working with the committee to be responsible stewards of
Idaho's taxpayer dollars that support this program. Thank you.
[The prepared statement of Mr. Wilkes follows:]
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Ms. Wissel. Thank you, Ken. You make two points, and the
first one was on the interpretation of the law regarding the
five services. And I know Lisa is planning to look into that as
soon as we get back and find out what that's about and really
look at the law. The second one, you talk about a more
restrictive interpretation of the match, and that's an issue
that came up during the hearing that we held in Washington on
May 14. The problem with this is that there are States that are
using other services funding to meet the match, and that was
not Congress's intent. That the twenty-five percent, isn't it?
Match that's suppose to be new resources, not money taken from
in-home services, nutrition, or any other program to meet the
match. So, that was the concern that came out during the
hearing that was held in Washington, and that's probably why it
was brought to the State's attention to make sure that you
don't take money from one program to fund another.
Mr. Wilkes. Right, and we don't.
Ms. Wissel. And I did not think that would be an issue in
Idaho, but that was the concern, that you would take money from
other very-needed programs to fund another one.
I'd like to open it for questions that the audience here
may have for any of the panelists up here. If you have them
written, then, please raise your hand. We'll have someone pick
them up. Or you are more than welcome to come up to the
microphone and ask the question yourself. Any questions that we
have out there?
While you pick them up, I will ask one of Ken. Do you feel
that you have been getting adequate guidance from the
Administration on Aging? I'm talking about not the regional
office, but from the administration itself.
Mr. Wilkes. No. I think that I would like to have seen
guidance more early on, and it's trickling down now. We're
starting to get a little more information. I mentioned in my
testimony, the frequently asked questions, that has been quite
helpful. This guidance about the having to put money in all
five categories, if that is going to hold, we should have been
notified of that well before now, because we have not given
that guidance to our area agencies. And, on Friday, their
applications are due to us, and now we have new guidelines we
have to issue. So, that's troublesome to me.
Ms. Wissel. Now, a follow up question to that, you talked
about applications or program plans being due by June, then the
program is to begin July 1. Are you going to be able to keep
that time line?
Mr. Wilkes. Yes. I'm certain we can keep that time line. We
should be able to complete our review of these applications
that gives us thirty days to review them. The only thing that
could create a problem again, however, to alter that schedule
is now if we do have to tell the area agencies they've got to
budget money in all five categories, they'll have to re-submit
their applications to us.
Ms. Wissel. I have a question here, but I'm wondering if it
was a question that we needed to address here? Was that a
question you wanted--any particular panelist to answer?
Sharon. I have no preference.
Ms. Wissel. It says, Medicaid now reimburses participation
in a----
Sharon. Adult day health.
Ms. Wissel. Adult day health, when did you anticipate that
Medicare will reimburse for adult day health?
Mr. Wilkes. I can answer that, no. Medicare?
Sharon. Uh-huh.
Mr. Wilkes. I don't see it.
Ms. Wissel. And probably not right now. Do you know,
whether it's something that is being looked at as part of the
Medicare reform, I don't know. Ma'am?
Sharon. My concern is that we are about to open an adult
day health facility in Moscow, ID, that will cover a good
portion of region two. We already have fourteen people signed
up, and we will open July 1. But the biggest problem we are
seeing is that there are a number of people on Medicare who
could use this service that can't afford it. And we know this
is a cost-effective alternative to hospitalization, so I would
petition that you would question in terms of Medicare covering
adult day health services in the future.
Ms. Wissel. I have another question here. This is for
Bobbie Sailor. It says, concerning respite care, will there be
additional staff to make a determination, and how long will
that determination be effective?
Ms. Sailor. For the caregiver to access the respite, we
would see that we would probably need an additional case
manager, part-time case manager to go out and do the
assessments. And hopefully the turnover from the time we get
the referral to the case manager going out will be shortly,
because that's something that needs to get taken care of right
away. Usually when they need respite, it's not 6 months down
the line, it's right now that they need it. So, our hope is
that we would address it with a timely fashion.
Ms. Wissel. I have another question for the caregiver. If
you were to design this program yourself, which one of the five
categories would you see as the most important when it comes to
the family caregiver program?
Ms. Wilson. I think probably the information assistance, so
that we, as I'm talking as a person that would be possibly a
caregiver, would know where to go find the information, be able
to pick up the phone and call a number and have them tell you,
OK, either this is where you go or this is what you do. So, I
think the information, I think that's probably been one of my
biggest frustrations with the grandchildren is trying to find
out what's there, how I go about accessing it. With my mother,
it was a frustration; however, working for an area agency was a
real benefit in that way, because I had them to come to. But
other people who have never accessed any type of help, never
done anything with Medicaid, never had any reason to, the
frustration is really high, and just not knowing what to do.
Ms. Wissel. Thank you. Bobbie?
Ms. Sailor. Yes.
Ms. Wissel. I don't recall how much your area is getting
for the family caregiver program, but of the allotment to your
area, what percentage of the funding will go for respite
services?
Ms. Sailor. We're getting 68,000, and I believe--I don't
have it right in front of me, I believe around 20,000 is going.
So, almost a little over a quarter, about a third, almost a
third is going to respite.
Ms. Wissel. The reason I ask is because during discussions
regarding the round tables and in discussing the National
Family Caregiver Program, as you'll recall, there were three
areas that caregivers brought up every time, that was the
education, the support, and the respite, and that's why we're
interested of, to know, how much is going for those categories
that we heard the family caregivers talk about.
Any other questions out there. I have a gentleman right
back there.
Mr. Adams. Thank you, Lupe. I've been handed a letter from
our local case manager in the Agency on Aging. I'm Bob Adams.
I'm the chairman of the local advisory board, and this is a
letter that I think kind of fits in to the things that we've
been hearing today and especially from the Senator. This is a
letter from a lady in Grangeville dated yesterday. She says, my
husband and I, ages 69 and 60, have moved in with my parents
age, 87 and 80, because they require 24-hour-a-day care. My
father suffers from advanced dementia as well as heart disease.
He is very weak and forgets how to walk, talk, eat, and use the
bathroom. He wears diapers and has to be bathed. He has
difficulty swallowing and becomes dehydrated. Also, he requires
a strict regimen of medications to keep him calm. My mother is
a bedridden diabetic with both legs amputated and is partially
paralyzed on her left side. She also requires a great deal of
care. She uses a bedpan six to twelve times in a 24-hour
period. She suffers from diabetic paresthesias, which is a
partial paralysis of the bowels. She requires the assistance of
a home health aide three times a week to assist her with bowel
movements with occasional visits by the registered nurse. This
costs us over $200 a month, since Medicare does not pay for
this. The pharmacy bill runs from $250 to $600 a month. We were
also paying for diapers for both of them until a kind
pharmacist informed us that Medicare would pay if we obtained a
prescription for these items. They have a total monthly income
of $1435.30 from Social Security and a small IRA. Expenses
greatly exceed income each month. Fortunately, they still have
some savings, so we are able to hire some outside help, mostly
for the night shift so that we can get a little rest and 2 days
a week for a few hours so we can get away for a little while.
This letter is not meant to be a complaint. Rather, it is
to give a picture of what many seniors are going through. In
fact, one of the nicest things happening to us is the respite
care provided by the Area Agency on Aging. The agency has
arranged for a health worker to be available from 9 to 12 each
Sunday morning so that I can attend Bible study with my
husband. This enables us to keep up our spiritual strength,
without which the distress from this situation would mentally
overwhelm us and cause these two fine people to have to be
placed in a nursing home. This would be an unhappy situation
for us all.
This is not necessarily an unusual case anywhere for old
people. Our case manager worker wanted me to read this in case
some of you don't realize how well off you really are. Thank
you.
Ms. Wissel. And that is very appropriate for this forum.
Larry?
Larry. I have another short, one-page letter that I was
asked to read, if that's OK. I guess I'll get up to the
microphone. I spent 2 years as chairman of the Idaho
Commission, and just want to tell the people here at home how
much I appreciated you there and how comforting it is to know
that you're in DC looking after our needs and also to thank Ken
Wilkes. I spent a number of years working with him. You've both
been a pleasure, and now I'll go on with my letter. It is dated
to the Senate Special Committee on Aging. Just a year ago a
horrible disease took my husband's life. It was devastating to
me and to his children. During the last few months of his life,
the help we received through home health and then through
family hospice was of the greatest value. The financial drain
of the care and of the medicine could have been a great burden.
But because of the aid through the program of hospice, I could
be reassured that my husband would not worry about being able
to pay for the drugs that kept him nearly pain-free. It was
extremely important to our family that he received the
financial medical assistance during those last days of his
precious life. I will be forever grateful, sincerely Pat Ebel.
Thank you.
Ms. Wissel. Thank you, Larry. Any other questions?
Ms. Pew. My name is Becky Pew, and I work as a coordinator
of domestic violence services in Latah County, in Idaho. And
while many of the areas that you guys are addressing, and this
is for anybody on the panel, such a respite care, information
and support to caregivers are good ways to combat domestic
elder abuse. Knowing that the statistics show that one in 25
older Americans is abused or neglected, 90 percent of that
coming from family members, I'm wondering if domestic elder
abuse is being addressed and how it's being addressed?
Ms. Wissel. Ken, I think you can answer that, can't you?
Mr. Wilkes. Yes. We have an adult protection program here
in the State of Idaho that is administered through our
Commission, and it is available to address those kinds of
issues. It's available through your Area Agency on Aging. Jenny
Sorens is the director, and I don't recall who your adult
protection coordinator is here.
Ms. Sorens. Elizabeth Allen.
Mr. Wilkes. Elizabeth Allen is the coordinator. So, if you
needed more information about the program, you could talk to
Jenny.
Ms. Wissel. Sir?
Mr. Johanson. My name's Carl Johanson, and I'm the director
of Counsel on Aging Human Services, which is located across the
river and over in Washington State, but our agency is the rural
transportation provider in all of Central Idaho. And I have a
couple of comments to make both--not really questions, but
comments to make in relating to this bill and also to relay on
to the Senator, I didn't get a chance to both thank him and
also ask a question. So, I'll start my remarks with, the bill
has an assumption of access. Funding from the Family Caregiver
Support funding, I think, can be used, as I understand it, for
adult day health, which has been mentioned and out-of-home
respite. But in the planning that's been done and so on, both
nationally, I have not heard any dialog about how people get to
those services. There has not been a corresponding increase in
funding to those that would be expected, other than the family
caregivers themselves, to provide transportation to get them to
those services, which almost always is going to require lift
vans, specialized vehicles, specialized training for drivers
and so on, and no increase. Now, Senator Craig has helped us
with another hat on, the State of Idaho, ten of us receive a
5309 earmark, which we've been able to get vehicles. And we're
trying for another one as we speak, so I can mention that. But
there is no funding through the Federal Transportation
Administration, 5309, Special Funding, related to health care
access and the growing demands from the senior population. And,
so, more directly, I was going to ask the Senator that there is
growing interest in a non-emergency transportation benefit
under Medicare, similar to Medicaid. It could save bundles of
bucks. Because, oftentimes, the reason that people are
prematurely institutionalized is because they can't get to the
needed community-based services that they need. I don't know of
the couple that was mentioned in the previous letter from
Grangeville, but until 2 years ago, there was not an accessible
vehicle in that county that would have transported the woman
with the double amputation to needed services. She would have
needed to go by ambulance, and that's not appropriate for
routine things like any socialization or just routinely to any
other activities other than a doctor. And I would just mention
that if we were to grow in that area, and I see a need, one of
the agencies that's really working on trying to have that be a
legislative proposal is the Community Transportation
Association of America, has recently, last week, made it its
No. 1 legislative proposal for the next year, Del Marsico there
as the director. I think it be really helpful, particularly in
rural areas.
Ms. Wissel. Thank you, Carl. Any other questions for the
panel?
Unidentified Audience Member. I think it was, Bobbie, you
mentioned a guardianship?
Ms. Sailor. Emergency guardianships.
Unidentified Audience Member. Emergency guardianship, is
that only for family caregivers at home, or do you come into
long-term care settings as well? And, is there something in
Lewiston area?
Ms. Sailor. I really don't know at this point. I would--for
the caregiving, I really don't know. I couldn't answer that.
Ms. Sorens. We have not utilized our legal contract
funding, which is very limited, to bring forth guardianships in
long-term care facilities for many reasons, Nancy. We haven't
done that. If a facility has felt the need to proceed in that
direction, usually the facility's attorney or their corporation
has footed the cost of that.
Nancy. Really? Because that's a conflict, I think. That's a
real conflict. But there isn't in Lewiston, because it involves
caregivers and family members as well, I guess.
Ms. Sorens. You know, I'm not saying that we probably
wouldn't look at it, but it's not something that we do, in
general. Our contract this year had $9,000 in it to cover five
counties, and we've had to prioritize. And in prioritization,
you know, it doesn't mean that issues that fall to the bottom
aren't important. They are, but we've just had a limited amount
of funding to work with in five counties.
Nancy. Does that apply to assisted living and people living
in retirement settings as well?
Ms. Sorens. It does. It applies to anybody who might be in
need of legal services in our five counties, facility or not.
Nancy. OK. And this question is to Ken Wilkes, and that is,
I heard it referred to that, at least the illustration was,
there is long-term care or nursing home that is the tip of the
iceberg and 90 percent home caregivers, at home, and their
identified top issues would be education as well as counseling
and support services; and, that is, how do you care for someone
at home. Do you anticipate a joining or working together in
support of older Americans between facilities and nursing homes
who do have all the abilities to train and to do that kind of
thing to the general public?
Mr. Wilkes. Well, I would hope that our area agencies in
submitting these applications would include some funding to
provide education and training, and certainly facilities such
as yours would be a resource, as well as the Alzheimer's
Association, who does a lot of training on development of
support groups and provides education on training of caring for
a family member with Alzheimer's. So, the money under this
program, we are required to pass it all on to the area
agencies. We cannot keep any of that money at the State level.
So, it will be the area agencies to determine how much and if
they plan to put any into that category of service. And it is
one of the categories under this program, and then they, in
turn, would identify local resources that can provide that kind
of education and training. So, you need to deal with your area
agency. However, I will say that when we review these
applications, we'll be looking to see if any money is being
proposed by any of the area agencies for that purpose, because
that certainly was one of the services that the three
caregivers on our work group identified as important.
Nancy. Thank you.
Ms. Wissel. Thank you. Any other questions?
Ms. Kramer. Hi. I'm Krista Kramer from the Disability
Action Center in Moscow, and one of the questions I have is
about the parameters for who qualifies for caregiver support
under this program. Working for a cross-disability
organization, I see the caregiver issues as being very similar,
whether that caregiver is a 21-year-old parent of a newly
disabled child or a 65-year-old caregiver for their elderly
parents or a spouse who's 35 whose husband just received a
spinal cord injury. Will this caregiver program support people
across the board even though the funding is coming through the
Committee on Aging?
Ms. Wissel. Ken.
Mr. Wilkes. You have to keep in mind that this is under the
Older Americans Act, and it is for caregivers age 60 or older
or----
Ms. Kramer. So the caregiver has to be age 60 or older?
Mr. Wilkes. Yes. The caregiver has to be age 60 or over,
which is the basic age requirement for all services under the
Older Americans Act. However, there is a provision that up to
10 percent of this money can be used for grandparents raising
grandchildren. In that case, the grandparent could be, say, a
forty-year-old grandparent, as long as the grandchild they're
raising is under the age of eighteen. Those are the guidelines
for the program.
Ms. Kramer. OK.
Ms. Wissel. Did that answer your question?
Ms. Kramer. Yes, it does. It brings up again one of the
concerns that I have about the financial pathways through which
money travels to provide similar sets of services, because I
often see the same needed service being provided through
different funding streams and very inequitably, depending upon
the specifics of when the disability or the need was acquired.
One system provides those services if the disability was
acquired before age 22. A completely different service system
provides the same services for age 60 and over, and a different
one yet provides it in an intermediary. And, I'm wondering if
there is a way to communicate and collaborate and to keep the
equity across those systems when the needed services are the
same but the time period of acquisition is different.
Mr. Wilkes. Lupe, I need to correct myself. The caregiver
has to be over 60 or a caregiver caring for a family member
over age 60.
Ms. Wissel. OK, great.
Unidentified Audience Member. I guess my question is kind
of in a round about way. As a previous business office manager
for a long-term care facility here in Lewiston, I used to admit
patients or residents for respite care. And, as a taxpayer, I
guess my feeling is, if we can get the caregivers to come in
the home to let the spouse at 60 years old or older to give
them a little break, I think in the long run, I think that's so
much better, because it saves money. And like this is starting
to affect my family now because of Alzheimer's and dementia,
and I know if we took my father-in-law out of his home on a bad
day to give my poor mother-in-law a little bit of a break, it
would probably be fifty times worse had he not be been taken
out of his home. And it's got to be cheaper than going into a
long-term care facility. So, as a daughter-in-law who loves her
father-in-law very much as well as the business side of me
thinking how we can save taxpayers a lot of money, I really
hope that the respite care is really--I know you said as one of
five categories. I hope that's one area that really has a lot
of attention, because I think as a family member, this really
does need to be addressed.
Ms. Wissel. And, again, you're echoing what we have heard
during many round tables when this program was coming about.
Unidentified Audience Member. I got three of the five
categories, respite care; education slash information, I guess
those two are together; support and counseling. What were the
other two, other services?
Ms. Wissel. It's the other services, support services, and
what's the fifth one?
Mr. Wilkes. The categories are, information assistance,
individual counseling, organization of support groups--this is
all one, individual counseling, organization of support groups
and caregiver training. The fourth one is respite care, and the
fifth one is sort of an open-ended one called supplemental
services.
Unidentified Audience Member. OK, thank you.
Ms. Wissel. Another question back there?
Unidentified Audience Member. I only had half of my
question answered on the first written ones. The second part of
it was, how long would the determination for respite care be
effective? Is it like a month, or can they come in like in 6
months and say, I need another respite?
Ms. Wissel. I think you would answer that.
Ms. Sailor. I'm sorry?
Ms. Wissel. The question is, once someone applies and found
eligible for the services, how long is that eligibility good
for?
Ms. Sailor. I don't know that. As far as the plan, we
haven't come up with that. We're still doing the planning
process, so we haven't gotten everything ironed out yet.
Ms. Wissel. So, if someone applies today and 6 months later
they need the service again, would they have to reapply?
Ms. Sailor. For the respite, we're looking at a 7-day
voucher within a 12-month period, so it would be for a 12-month
period.
Ms. Wissel. Does that answer your question?
Unidentified Audience Member. Uh-huh, but I have another
one.
Ms. Wissel. OK.
Unidentified Audience Member. Where is the respite care?
Are you going to say it has to be done in the home?
Ms. Sailor. We have currently respite services available in
the home, but one of the things when we did our written survey
was that we found they also needed longer respite than just a
couple hours. So, a weekend or a few days, and so for those we
would be looking at a long-term facility, probably contracting
out with them to do that. The couple hours would be done in the
home. Whatever best meets the need of the client.
Ms. Wissel. And with that question, I am going to conclude
the forum, first, because of time; second, we have a plane to
catch. But we want to take just a few more minutes to answer
any other questions you may have for any of us up here. But we
will go ahead and conclude the forum.
[Whereupon, at 2:19 p.m., the forum adjourned.]
NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM
----------
THURSDAY, MAY 31, 2001
U.S. Senate,
Special Committee on Aging,
Caldwell, ID
The committee met, pursuant to notice, at 3:12 p.m., in
Langroise Hall, Albertson College, 2112 Cleveland Boulevard,
Caldwell, ID, Hon. Larry Craig, (chairman of the committee)
presiding.
Also present: Representative Michael K. Simpson.
The Chairman. Ladies and gentlemen, if I could have your
attention, first of all, let me thank you so much for coming
out this afternoon, but before we start our hearing, I'd like
to take a few moments to tell you a story that was brought to
my attention about a year ago. This is a story that has
culminated in success of the kind that both the Congressman
Mike Simpson who has just joined me and I really appreciate
being involved in.
OPENING STATEMENT OF SENATOR LARRY CRAIG, CHAIRMAN
The Chairman. The Senate Special Committee on Aging will be
convened.
Good afternoon, and let me thank you all for attending this
Senate Special Committee on Aging hearing on the issue of
National Family Caregiver Support Program. Last year, Congress
passed legislation reauthorizing the Older Americans Act. I was
an original cosponsor of that legislation which updated and
amended the Older Americans Act, and I was extremely gratified
that finally Congress could come together in the
reauthorization of this important national law.
As part of this reauthorization, Congress added an
important and exciting new component to the Act. Specifically,
this legislation authorized 120 million to establish a new
National Family Caregiver Support Program to assist those many
daughters, sons, husbands, and wives who struggle with the
daily task of caring for an older member of their family.
During our consideration of the reauthorization we, at
Congress, heard overwhelmingly from family caregivers all over
America. These caregivers let us know loud and clear what their
most urgent needs are.
First, they said respite care to give family members caring
for elderly loved ones a little bit of time away, whether to
attend to other family or professional matters, or maybe simply
to take a well-deserving break.
Second, basic and practical education about the nuts and
bolts of being a caregiver: How do you bathe someone who can't
walk. Where do you go to get special beds and other needs
equipment. Most family caregivers are not formally trained and
many are desperate for some place to turn to for answers to the
basic questions they need to have responded to.
Third, we heard that support and counsel. Caring for an
ailing family member can be among life's most demanding
challenges. It is a hard and often lonely burden. For many, it
is a situation something as simple as a local support group or
a counselor to talk to can be a precious lifeline that makes
the burden and the responsibility that they have undertaken
bearable.
At the moment, the States have just recently received their
initial funding for the new caregiver program, and most are now
in the process of making critical decisions about how the funds
will be used.
Our first goal today will be to look at how the States are
setting up their programs. I believe it is imperative we ensure
that the new funding be focused as directly as possible on
those things their caregivers themselves tell us they need
most; namely, respite, education, and support.
Similarly, we must keep a watchful eye to make sure that as
many of the new dollars as possible get to the actual
caregivers on the front line, rather than simply being used for
more agency staff or administrative duties.
Second, we also hope today to examine whether or not States
are receiving the clear and effective guidance they need from
the Federal Administration on Aging regarding the program's
implementation.
Again, I would like to thank all of the witnesses for being
here today, for attending the hearing, and for providing their
testimony. Before I turn to those witnesses, let me say that I
am pleased that Senator Mike Simpson of the Second
Congressional District could join and be with me this
afternoon. Mike's taken a very special interest in one of his
Congressional responsibilities, and that is, of course, looking
after the senior citizens and the laws that pertain to them as
it deals with the folks in the Second District. So let me turn
to Mike for any comments he would like to make.
Mike.
STATEMENT OF HON. MICHAEL K. SIMPSON, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF IDAHO
Mr. Simpson. Thank you, Senator Craig. I appreciate the
opportunity to be with you here today on this issue and talk
about what's happening with our senior citizens and senior
caregivers, but first let me congratulate Phyllis on her new
citizenship. Some people wonder why we do this job because of
the travel and all the things that it involves, and I can tell
you that's exactly why we do this job. That's one of the things
that makes it exciting.
But, I took a special interest particularly in this area of
senior caregiver, and it occurred probably 8 or 9 years ago
when my mother-in-law who had dementia very bad couldn't stay
in her own home any longer, and we had the opportunity to add a
place onto our house and have her live with us for 8 years and
then about a year ago she passed away; but it presented,
obviously, unique challenges and also opportunities. I got to
know Margaret better than I ever would have had she not lived
with us. But we were fortunate in that we were able to do that,
and that's not the case with all senior citizens or all
families that had the ability to do that. And so it was, as I
say, it was a blessing that we were able to take care of her.
And I would like to, in this hearing, focus on what we need
to make sure that these senior citizens are able to stay with
their loved ones or in those types of situations where they
will be taken care of by people they know. So I appreciate the
opportunity to be here with you, Senator Craig, and talking
about this issue. Thank you.
The Chairman. Well, Congressman, thank you very much for
being here with us.
Before we turn to our panelists, recently on a hearing that
we held in Washington on this issue, a very fascinating
statistic was provided that amazed me. We recognize that our
elderly who live in nursing homes and assisted living
facilities and retirement centers, oftentimes when we see those
facilities and the people in them, they are drawn to our
attention because they are, without question, a higher profile
group by their presence. The statistic that fascinated me is
that 95 percent of the elderly who are being provided care are
not in those facilities. They are in homes; private homes.
So when we see a nursing home or an assisted living
facility or a retirement center that offers advanced care, it
really is merely the tip of an iceberg, and underneath are all
of the private caregivers out in private homes caring for their
loved ones as I mentioned, their mother or their father or
their husband or their wife, and that's where this program has
begun to focus. And that's why we are here today, to begin to
improve by information and assistance that broad 95 percent
where care is being given.
So with that, let me turn to our panelists. We are
fortunate today to have our first panelist, Linda Carpenter,
being an actual caregiver, and I think that's special that we
can have someone who is engaged right now in caring and
providing for a loved one.
So, with that, Linda, welcome to the committee, and please
proceed with your testimony.
Ms. Carpenter. Thank you so much, Senator Craig. I just
want to kind of make this clear: I am just a part-time
caregiver right at the moment.
The Chairman. All right.
STATEMENT OF LINDA CARPENTER, CAREGIVER
Ms. Carpenter. My mother has Alzheimer's. She was diagnosed
about 5 years ago. At that time, she remained in her home with
my stepfather taking care of her, and about 3 years ago, she
got even more severe enough that we had to move her in with
relatives. And she was from the Lewiston area and they moved to
Hermiston, OR, where she was staying with my stepfather's
family down there. I found out about caregiving in great detail
from what they went through with my mother and my stepfather,
having two that they were taking care of and dealing with; it
was quite intense.
And I had been in charge of the respite program in
Washington County and still am, and so I had done a lot of
volunteering myself. By the way, all the people who did the
caring in the respite program are volunteers, and really one of
the things that would really be helpful is if these people
could get a little reimbursement for what they do. They do a
wonderful job going in sometimes four to 6 hours a day,
sometimes even overnight, just to give the caregiver a break.
So, you know, this is such a wonderful program, and in the
Oregon area where my mother and my stepfather was, they didn't
have nearly as good as respite care down in Hermiston as we do
in Washington County in Idaho, but thankful we have that. But
that would really improve it, I think, if we could get a little
funding for the people that go in and do health care.
And then also I have done home health, and a lot of the
people that I have taken care of have Alzheimer's and I know
now they have an Alzheimer's Association does have funding.
They will pay a certain amount every month for people to go in
and take care, so that does help, but that's a little different
than what the respite care program does.
But about January, my relatives called and said, you know,
It's getting really stressful with your mom and with your
stepdad, and we cannot continue to keep both of them.
So I had to make a decision. I had to decide whether I
wanted to keep my mother in our home or whether I thought she
was needing a facility care. And so my husband and I sat down
and we talked, and she had been getting a little bit more
severe. Sometimes Alzheimer's patients get fixations on things
so they have to have certain things. One man that I heard of,
he liked keys, so they would have to give him a ring of keys to
carry around; that's fairly innocent. But my mother had started
getting a fixation on matches. This was very dangerous, and
this really worried them down there as one of the reasons why
they said, ``we just can't continue to do this''. We're very
worried that she's going to harm us and herself.
So, we did have to make a decision on whether to keep her
in our home at that time. After we discussed it--we're a busy
family, I still have a child at home, and we just decided, you
know, we think she's ready for a facility, but then it comes to
the problem of where, you know, what is a good facility, and
was she ready for the nursing home or was she ready to go, you
know, in maybe something that was assisted living.
So we began looking around. And in talking to my mother, I
realized that she was about level two, which is not severe but
it's not the beginning stages either. She can still converse
and talk, she did not wander like some of the Alzheimer's
patients did, and so not knowing whether this was going to get
more severe, so we looked around and we found a wonderful
facility in Payette, it's Ashley Manor, and they have
facilities everywhere. And I was very impressed with the staff.
They have been trained for this and they know what they're
doing over there, they can redirect them if they decide they
don't want to get up in the morning and do things they should,
like get certain clothes on and things. They're wonderful that
way. So this is a wonderful facility and it's an opportunity
for us to learn a lot from them too. They are very well trained
and I appreciate that.
But for those that want to keep their loved ones in the
homes, respite care is such a wonderful program. We need more
of it. We need more funding for more hours for the volunteers,
as well as for the coordinators that do this in all the
counties.
And I think it's a wonderful thing if the loved ones want
to keep their mother or their father at home to do this, but
for us, that was not the option, and we just had to make the
choice. This is sometimes what you have to do. You can keep
them for a while and then decide to put them in a facility if
this is what you think is the best.
I found out in dealing with my mother and all the things
that you have to do to make these decisions, you know, there's
her medications, there's, you know, the doctor that she used
that's best for her, there's all these decisions that you have
to make, and sometimes it's very hard. You don't know who to
turn to. I was fortunate: I had dealt with these people and I
tried to help them through the respite program and through the
home health, so I had an idea, but for people who don't, they
don't know where to turn, and it would be really nice to have
somebody who can counsel them on these things and people who
would be in charge of something like that. So that would be
very helpful also.
So I would like to share in the last newsletter from Ashley
Manor ten things, and this would apply to anybody that's taking
care of somebody at home. I thought these were very good
things.
And just training for people, for caregivers, too is so
important, and we do a little bit of that with respite but they
need more training if they're going to keep somebody at home.
It's a full-time job.
These are ten requests from an Alzheimer's victim, or could
be dementia or anybody that's at home with a loved one:
Be patient with me. Remember, I am the helpless victim of a
brain disease which is out of my control.
Talk to me. Even though I cannot always answer you, I can
hear your voice and sometimes comprehend your words.
Be kind to me, for each day of my life is a long and
desperate struggle. Your kindness may be the most important
event in my day.
Consider my feelings, for they are still very much alive in
me.
Treat me with human dignity and respect, as I would have
gladly treated you if you had been in this bed.
Remember my past, for I was once a healthy, vibrant person,
full of life, love, and laughter, with abilities and
intelligence.
Remember my present. I am a fearful person; loving husband,
wife, father, mother, grandmother, grandfather, aunt, uncle, or
a dear friend who misses my family and home very much.
Remember my future. Though it may seem bleak to you, I am
always filled with the hope for tomorrow.
Pray for me, for I am a person who lingers in the midst
that drifts between time and eternity. Your presence may do
more for me than any other outreach of compassion you can
extend to me.
Love me. The gifts of love you give will be a blessing for
which we will both live our lives with light and forever.
These are some things which would be very helpful for all
caregivers and for the training that would help them.
My mother's doing very well, by the way. She's adjusting.
They are enjoying her over there. She can still converse and
carry on a conversation, but not all of them over there can,
and sometimes that's very hard to deal with too.
That's all I have to say. If anybody has any comments or--
--
The Chairman. Thank you, Linda.
Let me now turn to Russ----
It's on? There we go. Thank you. That's much better.
Let me now turn to Russ Spain, director for Area Six,
Agency on Aging in Idaho Falls. Russ, thank you for coming over
and being a part of our hearing, today.
STATEMENT OF RUSS SPAIN, DIRECTOR OF AREA SIX, AGENCY ON AGING
IN IDAHO FALLS, IDAHO
Mr. Spain. Thank you, Senator Craig and Congressman
Simpson. I am here as the president of the Idaho Association of
Area Agencies on Aging, taking the place of Brenton Sempreviva,
who is the director here in Area Three, and the testimony that
I will be giving is his. You will hear mine tomorrow in Idaho
Falls.
The Chairman. Fine enough. Thank you.
Mr. Spain. Under the National Family Caregiver Program, we
were only awarded $187,582 for direct service delivery. Due to
the size of our service area, we felt it best to enhance other
nonprofit programs currently providing caregiver support and
not attempt to duplicate services.
In category one of the legislation, 11 percent was
allocated to information and outreach to provide information to
the public concerning this program and identifying caregivers
in need of service provisions.
For category two, 11 percent was allocated to case
management to assess needs of caregivers, develop care plans,
authorize services, coordinate the provision of services and
providers, and follow-up and reassessment as needed. The Idaho
Association of Area Agencies on Aging has already developed a
draft caregiver assessment instrument.
Category three. Eight percent was allocated to counseling,
slash, support groups, slash, training, to support existing
support groups and training for caregivers.
Category four. Sixty percent was allocated to actual
respite care to establish nonprofit respite care programs in
our service area.
Category five. Ten percent was allocated to supplemental
services, including legal assistance to caregivers and
grandparents raising their grandchildren.
This additional money for respite care has been needed for
a long time, and we appreciate being able to better serve our
seniors and their caregivers.
And that is the text of his testimony, Senator Craig. Thank
you.
The Chairman. Russ, just in clarification: Of the little
over 500,000 received, you're speaking in that amount the
187,582 specific to that area, Area Six?
Mr. Spain. To Area Three.
The Chairman. This area here.
Mr. Spain. That is correct, this area we are in now.
The Chairman. Thank you. That's right, you did make that
clarification. I appreciate that.
OK, thank you very much, Russ.
Now, let me turn to Ken Wilkes, the program operations unit
manager of the Idaho Division on Aging in Boise. Ken, thank you
for being with us.
STATEMENT OF KEN WILKES, PROGRAM OPERATIONS UNIT MANAGER, IDAHO
DIVISION ON AGING, BOISE, ID
Mr. Wilkes. Thank you, Senator, for the opportunity to
testify this afternoon on the National Family Caregiver Support
Program. My remarks will focus on implementation of the program
here in Idaho, including the service package and time lines for
beginning the delivery of these much-needed services. I will
also comment briefly on the assistance and guidance we have
received from the Administration on Aging.
We received notification of Idaho's allotment of $564,300
and our first written guidance from the Administration on Aging
on January 17 of this year, and our Notification of Grant Award
a little over 1 month later, on February 20. Soon after
receiving the information from AOA, the commission staff began
discussions about how we would implement the program. We
prepared a Powerpoint presentation for our upcoming commission
and Area Agency on Aging directors meeting, which was held
February 14 and 15. At the commission's business meeting on
February 15, we presented a plan for the design and
implementation of the program, and requested our commissioners'
support with the plan.
Our plan called for the formation of a small work group
that included three family caregivers, one of our Area Agency
on Aging directors, a representative of the Alzheimer's
Association, one of our commissioners, and a Native American
and Hispanic representative.
Our work group met twice: Once on February 28, and again on
March 14. Our first meeting covered the following:
We reviewed the 2000 Older Americans Act amendments
pertaining to the Family Caregiver Program and AOA's first
written guidance that we received.
We also included the telephone call with the Region Ten
Administration on Aging administrator and staff in Seattle to
discuss questions regarding the program. The questions were
made official in a letter dated March 7.
We have listened to the presentation on grandparents
raising grandchildren, and listened to the personal experiences
from the three family caregivers on our work group.
Our second work group meeting focused on review of concerns
and issues raised by our six Area Agency on Aging directors.
We also discussed some cultural caregiver issues that were
presented by Native American and Hispanic representatives.
And, finally, we reviewed a draft application that our
staff had prepared for the Area Agencies to submit to us in
order to receive these funds. This draft application was sent
to the Area Agency directors and discussed with them on a
telephone conference call on April 4 before it was finalized
and mailed in mid-April. These applications are due tomorrow
for our review and approval, and until we receive the
applications, we won't know exactly what service packages the
Area Agencies are proposing, but preliminary information
indicates that they will be proposing the use of funds
primarily for information and assistance services, case
management, and respite. You've just heard what Area Three is
proposing.
The three caregivers in our work group identified respite--
including adult daycare, caregiver education and training--and
support groups as services that would most directly benefit
them.
We plan to award funds through the Area Agencies by July 1,
and shortly thereafter, services will begin.
So as you can see, Senator, Idaho must move quickly to
design the program that we feel will be a model for other
States. We received telephone calls from a few other States
asking how Idaho was planning to implement the program, and it
appears we're well ahead of the implementation curve.
I'd like to close by saying that our regional
Administration on Aging staff has been very responsive to
questions that were raised both in writing and on the
telephone. Our acting director attended a meeting in Seattle on
April 25, that included a video conference with the AOA's
central office that addressed reporting requirements and
provided information on other caregiver programs. At the
Seattle meeting, AOA's staff said that they wanted to allow
States maximum flexibility in implementing the program to meet
their own needs. In addition, the Administration on Aging has
provided a list of frequently asked questions and answers to
those questions. The AOA's Web site has also been helpful and
AOA's sponsored conference on programs scheduled for September
6 and 7, in Washington, DC.
I would like to raise one major concern that we've
identified in the past week, and that is a requirement that
each Area Agency fund all five categories of services under the
Act; that we feel that some of our Area Agencies receive such
small allotments--the one you just heard from Russ is the
largest allotment of any of our area agencies, but we have one
area agency in Lewiston who was only to receive about $57,000,
and to spread that through all five programs would mean that
none of them would be adequately funded. And so that's a
concern we have and would like some clarification on it.
On behalf of the Idaho Commission on Aging, I'd like to
thank you, Senator Craig, for bringing the Senate Special
Committee on Aging to Idaho, and for the opportunity to testify
here today. As my testimony indicates, we're well on our way to
providing solid support for Idaho's growing number of family
caregivers. The goal of the Idaho Commission on Aging and its
six Area Agencies on Aging is to provide the most-needed
supporting services to family caregivers that would enable them
to continue to care for their elderly family members in their
homes to prevent or delay more costly institutional care. We're
committed to meeting the congressional intent of this program
and working with your committee to be responsible stewards of
Idaho taxpayer dollars and support this program.
And I'd also like to thank you, Senator, for your support
of the reauthorization of the Older Americans Act, includes
this program, and also allows States the flexibility of using
these funds to meet their own needs. Thank you, Senator.
The Chairman. Ken, thank you very much.
Let me turn to our last witness on the panel today Edwin
Walker, who is the director of program operations and
development group for the Administration on Aging in
Washington. We appreciate you coming out to be with us here in
Idaho. We hope that it's a treat getting out of the Washington,
DC., area to be with us. I'm sure you'll find it that way.
Please proceed.
Mr. Walker. Indeed, it's always a treat to leave
Washington, but sometimes it's also nice to go back home.
STATEMENT OF EDWIN WALKER, DIRECTOR OF PROGRAM OPERATIONS AND
DEVELOPMENT GROUP, ADMINISTRATION ON AGING, WASHINGTON, DC
Mr. Walker. Mr. Chairman and Congressman Simpson, thank you
for this opportunity to discuss the Administration on Aging's
efforts to implement the National Family Caregiver Support
Program. We appreciate your leadership and look forward to
working with you, and on this issue as well as other issues
concerning older Americans and their caregivers.
The past several months have been very exciting ones for
the Administration on Aging. With your support and support of
other members of the Committee, the Older Americans Act was
reauthorized. That reauthorization included the new National
Family Caregiver Support Program.
The National Family Caregiver Support Program is the first
major new component of the Older Americans Act since the
establishment of the nutrition program in 1972. For the first
time in the history of the Act, there is now a national focus
on caregivers as well as care receivers. The Administration on
Aging was honored that one of Secretary Thompson's first
official acts at the Department of Health and Human Services
was to authorize the release of $113 million to States to begin
implementation of this program.
Attention to the needs of caregivers could not come at a
better time in our country. Research has confirmed that
families provide upwards of 95 percent of the long-term care
for frail, older Americans. Almost three-quarters of informal
caregivers are women, many are older and vulnerable themselves,
or are running households, are employed, or are parenting
children.
Estimates from the 1994 National Long-term Care Survey
indicate that over seven million Americans are informal
caregivers providing assistance to spouses, parents, other
relatives, and friends. Approximately five million older adults
with disabilities receive significant levels of service from
these caregivers. According to the survey, if the work of these
caregivers had to be replaced by paid home care staff, the cost
to our Nation would be between $45 and $94 billion each year.
The assistance provided to the elderly or disabled friends
and relatives may range from bill payment, transportation for
medical appointments, food shopping and preparation, and more
complex personal care. As our older population continues to
grow, especially with the increased numbers expected as a
result of the aging of the baby boomers, we can anticipate that
the challenges of caregiving will increase as well.
Mr. Chairman, I am pleased to report that the
Administration on Aging and the national aging network have
made good progress in implementing the National Family
Caregiver Support Program. This Committee knows the caregiver
program is based upon three things:
First, our review of the recent research on caregiving;
second, guidance from professional caregivers; And, third,
discussions with family caregivers themselves.
We looked closely at the programs in various States across
the country--among them, Wisconsin, Pennsylvania, Michigan, and
Oregon--and engaged Federal, State, and local leaders in our
discussions. The Administration on Aging convened a series of
roundtables with caregivers in more than 30 cities across the
country, involving hundreds of caregivers and service
providers, policymakers, and community leaders. These
individuals shared with us their joys in caring for their loved
ones; their difficulty in accessing services; their
unpreparedness for this new and often scary responsibility;
their loneliness and isolation; and the compromises they had to
make in order to juggle work, families, and finances.
As a result of this invaluable input, the National Family
Caregiver Support Program is designed to be as flexible as
possible to meet the diverse needs of family caregivers. We've
encouraged States to develop multifaceted programs as required
by the statute, based on their own service to the network, and
to develop programs that are responsive to the needs of
caregivers.
We offered and we continue to offer and will provide
guidance and technical assistance to States and the national
aging network to help them understand and utilize the National
Family Caregiver Support Program's flexibility to design their
own systems within the bounds of the statute to best meet the
needs in their communities.
The statute requires the multifaceted system of support in
the National Family Caregiver Support Program to consist of
five broad categories of services:
The first category is information about health conditions,
resources, and community-based long-term care services that
might meet a family's needs.
The second is assistance in securing appropriate help.
The third is counseling and support groups to caregiver
training to help families make decisions and solve problems.
The fourth is respite care so that families and other
informal caregivers can be temporarily relieved from their
caregiving responsibilities.
And the fifth category is supplemental services on a
limited basis. This could include a wide range of services
designed to support the efforts of caregivers. Some examples
from State-funded caregiver programs include such supports as
home modifications, providing incontinence supplies, nutrition
supplements, and assisted devices. Again, all are designed to
be responsive to the needs of caregivers.
The legislation targets family caregivers of older adults,
and grandparents and relative caregivers of children not more
than 18 years of age. It also directs that States give priority
to services for older individuals who embrace social and
economic need, with particular attention to low-income older
individuals and older individuals providing care and support to
persons with mental retardation, or who have developmental
disabilities.
The $125 million we received in fiscal year 2001 will
enable State, local, and tribal programs to provide services to
approximately 250,000 of America's caregivers.
We distributed $113 million to States.
An additional $5 million is designated to assist caregivers
of Native American elders and will be released shortly, in
accordance with the guidance the Administration on Aging
received from tribal listening sessions held recently.
In the next week or so, we will announce the availability
of almost $6 million for competitive innovation grants and
projects of national significance. These projects, once
awarded, will demonstrate the test of new and diverse
approaches to caregivers, providing us with knowledge that will
be critical to the future success of the program.
The remaining $1 million is used for technical assistance
to the aging network to provide State and local networks with
the tools to be responsive to family caregivers. These
includes, as Ken mentioned, a national technical assistance
conference entitled From Enactment to Action to be convened in
Washington, DC., on September 6 and 7 later this year. It also
includes a moderated listserv on which expert researchers
prepare monographs on specific issues related to caregiving,
and enter into a dialog with the aging network on how to best
implement that issue in our country. It includes an expanded
Web page containing the most recent caregiver information and
resources for our aging network, and other educational and
public awareness conditions.
We have recently completed a series of regional video
conferences with all the States to discuss and clarify issues
related to implementation of the program. In addition, we
presented promising approaches from various caregiver programs
throughout the country that will be helpful as States design
their own systems. Specifically related to this great State, in
February, Secretary Thompson allotted $564,300 in caregiver
funding to Idaho for the establishment of a multifaceted system
of support in the State.
We applaud the efforts of the Idaho Commission on Aging for
conducting informational meetings with the aging network within
the State, and for establishing a very inclusive work group to
plan the program's components. We understand, and as you have
heard from Ken today, that proposals from the Area Agencies on
Aging have been solicited, with the expectation that funds will
be awarded throughout the State in July.
Ken has been a very active participant in the technical
assistance sessions that AOA has provided, including the video
conference convened by our Seattle regional office. By all
accounts, the implementation of the program here in Idaho is
well under way. We, at the Administration on Aging, stand ready
to provide additional assistance and guidance as needed.
In fiscal year 2002, the President's budget request for the
National Family Caregiver Support Program is $127 million, an
increase of $2 million over the fiscal year 2001 level. This is
designed to help maintain the current level of services to
caregivers as our program begins to take hold. Over the next
year, the Administration on Aging is committed to develop
partnerships with our sister Federal agencies and other
national organizations to further the caregiving agenda; we are
committed to implement a public awareness campaign to inform
America of the importance of caregiving, and to encourage
caregivers to seek assistance and training as they begin their
caregiving careers; and we are committed to continuing to
provide the aging network with assistance and support to better
serve our caregivers.
Mr. Chairman and Congressman Simpson, we appreciate this
opportunity to share our progress on the implementation of the
National Family Caregiver Support Program, and we look forward
to working with you to meet the challenges and opportunities to
support America's families.
I would be happy to address any questions you have, but
first I want to clarify an issue that Ken raised with regard to
AAAs having to fund all five of the service categories.
The Chairman. Edwin, I'd appreciate that, because I was
going to start questioning with you and you've already been
sensitive to what the first question might be.
Mr. Walker. As I indicated in the prepared testimony, the
statute requires the development of a multifaceted system of
support. The statute also indicates at least five categories of
services that should comprise a multifaceted system of support.
In our guidance to States and in recognition of the fact that
it is only $113 million that was allocated to States, we are
not requiring States or area agencies to fund out of the
caregiving money all five of the categories of services. What
we are saying has to be in place is that those categories of
services have to be provided.
An example: Information. We are well aware that
information, and information and assistance, is provided
already in the aging network by our area agencies. There may
not be the need to put additional caregiver money into the
provision of information, or information and assistance. That
is the kind of flexibility that we believe the State should be
free to deal with in this situation.
The Chairman. Thank you. In other words, I gather that you
believe that within the total system, there's flexibility
because of information that's available, and within the new
program there's flexibility so that you can be more targeted as
it relates to the use of the money?
Mr. Walker. That is correct.
The Chairman. OK. Edwin, what specific steps is the AOA
taking to assure that the maximum amount of new dollars are
used for direct services to caregivers, rather than
administration and staffing? And when you were breaking out the
money outflow and the new programs that are to be implemented,
and the Native American program in addition, and I was trying
to add up the total in relation to 124, how does the rubber
meet the road?
Mr. Walker. Sure. The important thing for us all to
remember is that the National Family Caregiver Support Program
was included as a subpart of Title III in the Older Americans
Act, which means that the regular rules related to the
administration of Title III apply unless there is a specific
statutory provision in Title III-E., the National Family
Caregiver Support Program, that would supersede the general
provisions.
In saying that, the general provisions with regard to the
amounts of Administration and the remaining amounts with regard
to service dollars remains. States have an incredible amount of
flexibility, but the bulk of the dollars and the requirement in
the statute is for the development of a multifaceted system of
support. That support is services. Certainly we understand, as
I think Ken indicated, we are in this first year, we are just
out of the starting blocks, we are learning as we go. We have
encouraged States to do exactly what Idaho has done, the Idaho
Commission has done: Sit down with the aging network, employ
and thoughtfully plan, strategically plan, how the system of
services for meeting the needs of caregivers in your State
should look. Allocate your services in response to that plan.
The Chairman. Edwin, thank you.
Ken, 2 weeks ago, I'd mentioned in my opening statement to
the Senate Special Committee on Aging hearings on this issue,
and during those hearings we learned that some States are
simply diverting funding from existing senior programs in order
to meet the requirement of 25 percent State match of this
program. How is Idaho coming up with their match now, and will
this affect other senior programs?
Mr. Wilkes. Senator, we have funding appropriated by our
State legislature currently for some caregiver support
services. You heard mention of the respite program we had. With
that amount of funding and a small amount going into adult day
care, as well as some of the case management services being
provided currently to caregivers, we will have no problem
meeting our match requirement and there will be no problem, no
need whatsoever, to take money away from other programs to meet
this requirement.
The Chairman. So existing programs that fall within these
qualifying areas can be considered, especially if you blend the
new program into it. That would be considered a match and
that's acceptable to AOA.
Mr. Wilkes. That's correct.
The Chairman. Yes. You mentioned constructive ways the
Administration on Aging has been helpful as you set up your
program, and I'm pleased to hear that Idaho is well advanced in
the development of it, including video conferencing and their
Web site. If you have specific questions on implementation of
the Caregiver Support Program, do you have immediate access to
find answers; and if not, how are you securing the additional
information you need; and, third, I would say what more might
AOA offer you that you currently are not being offered or that
you found you might need?
Mr. Wilkes. As I mentioned in my testimony, Senator, I've
had regular contact with our regional office of AOA and they
have been very responsive. They're probably getting very tired
of hearing from me: I call about every other day it seems like,
I've had a lot of questions, and for the most part, we've been
provided answers in a pretty good, prompt, manner.
I raise this concern about the funding of all five
categories, because that's something that we just heard in the
past week and that concerned us that once we had already sent
out our guidance to Area Agencies and we're expecting
applications tomorrow, to have to turn around and give them
some additional instructions was disconcerting. It would have
been difficult to meet our July 1 time line. So it's very
helpful that Edwin clarified this issue for us, and maybe we
can proceed in meeting our guidelines.
I feel that sometimes when we contact our regional office,
well, more often than not, with a question, that we are not
able to get an official answer because we have to put it in
writing so they can forward it on to the central office, and so
sometimes the bureaucracy seems to slow things down; and if the
central office can maybe do something to give the regional
offices a little bit more flexibility or authority in
responding to questions, that might be helpful for States. That
would be probably one thing I would say about the response you
get.
The Chairman. In other words, the turnaround time on
information. I can appreciate that you not sign off on
something what might be considered official, but at least maybe
the ability to get advisory opinions while moving toward an
official opinion that gives you some direction might be
helpful?
Mr. Wilkes. Correct.
The Chairman. Russ, let me now turn to you if I could,
please.
Of the various eligible services identified in the
Caregiver Program, which do you believe are the most important
and why, based on your experiences?
Mr. Spain. Senator Craig and Congressman Simpson, I think,
based on experience, I really do think that the respite,
providing some sort of respite, and using a large majority of
the allocated dollars per Area Agency on Aging to supplement
what we already have in respite contracts or respite service in
our particular areas is one of the best uses of the money.
Excuse me.
One of the things that we heard we did, as you will hear
tomorrow in our particular area, we have had a caregiver
support group in Area Six for a number of years, and we went to
that group first and asked them what would be the best use of
the money in our area, and respite came out No. 1; but not only
respite, but when to provide that respite care: Weekdays, after
hours weekdays, or on weekends. And the variety of responses we
got we used to craft the plan that we provided to the Idaho
Commission on Aging. So respite is No. 1.
I think support for the caregiver support or for the
caregiver support groups and being able to establish
grandparents as parents support group is really important.
We're finding more grandparents raising their grandkids in our
area than we ever knew existed before, and establishing some
sort of support group for them is going to be important. And I
think, from what I know of the plans from the Area Agencies
that went to the Idaho commission, one of the things that
they're going to do as part of that grandparent as parent
allotment is to use some to supplement our legal aid contracts,
because legal advice is one of the things that these
grandparents need more than anything else. They can't sign the
kids up for school, they can't do other things that these kids
need, without some sort of legal control over the matters of
these children.
The Chairman. Russ, help me out there. I guess I did not
recognize that grandparents as parents fell within this
category. I appreciate the definition of caregiving there
broadly spread, but that's looking at it in different
perspective than I had thought was the charge here.
We're clear with that, we're within the realm of this new
program?
I see Edwin moving his head ``yes''.
Mr. Spain. Yes, we are, sir. We can use up to, within the
State, and that's true of each State, up to 10 percent.
The Chairman. OK.
Mr. Spain. Of the State allotment for support of
grandparents as caregivers of grandchildren.
The Chairman. Well, you're right: I think that's much
larger than most realize, and I bump into them quite often. And
I bump into very distressed grandparents sometimes, find that
they've taken on a phenomenal burden, yet their love causes
them to do that and they do need assistance in that area, and
that's pleasing to hear.
Russ, do you think that the Administration on Aging is
providing adequate guidance into the States as the programs are
implemented, based on your experience?
Mr. Spain. Based on my experience, Senator, yes, I do. And
I appreciate as an Area Agency director and speaking for the
other directors the flexibility that has been allowed to us
within this program.
One instance, as an example, a listserve that was
mentioned. I'm a participant in that listserve, and the
information provided to us about what other Area Agencies in
other States are doing or have implemented, had in progress for
years, has been very valuable to us.
The Chairman. Thank you very much, Russ.
Linda, let me turn to you, and, again, let me thank you for
being here and bringing your perspective as a caregiver and an
adviser in this program to the committee.
If you were designing a program to provide support for
people yourself, what type of assistance would be most helpful
in it? And by that kind of question--and I am suggesting to
you--do you find out that what we're proposing and what's being
implemented is adequate, or based on your experience would you
wish to modify it?
Ms. Carpenter. It sounds really good to me. It's just
something that we've needed for so long.
And I think the training for caregivers would be
invaluable; we've had nothing like that. And we have used
things from the Alzheimer's Association; that has been a big
help. We've not had training and we've not had the adequate
funding at all for the respite care. And as I said, the
volunteers, if they could get funding, would help so much for
them. And transportation costs, they do allow for that, but
it's very difficult to find a lot of people that want to just
volunteer for this task because sometimes it is very difficult,
and I think this is going to help so much in the respite care
program in the counties. And I think that it just sounds like
it's going to be covered very well.
We do have a caregiver support group in Washington County
also and it's been very helpful. One of the ladies down at the
care center in Weiser, her husband had gone through a lot of
that, and she started just a general care support group. We had
already had Parkinson's and Alzheimer's, but we just continued
them. And just any help with that.
Training. And people just come and just like to talk, but
the training and the funding for that would help and improve it
so much, and they have a group that come to that and it's
helped them so much. They just don't have anywhere to turn.
And counseling and things like that just really be a big
boost. I think it sounds wonderful.
The Chairman. You mentioned in your testimony
``counseling,'' and you've talked about the support group. If
you could, for a moment, expand on the counseling, what you
feel needs to be there? I sense other testimony that I've heard
before the Committee that that really is key in helping mental
conditions, if you will, these caregivers for what they are
experiencing or may experience.
Ms. Carpenter. Exactly. Talking about within the support
group, the counseling that's received?
The Chairman. Yes.
Ms. Carpenter. It's so valuable, and, you know, just to get
trained people in there to counsel them would really help. We
have a lot of volunteers that come and talk to support groups
and people who work with----
The Chairman. You're telling me that you really believe
there's a need for additional trained counsel members, if you
will.
Ms. Carpenter. Definitely. Definitely. And the funding for
that would be valuable. And just even the families could sit
down one-on-one and talk with them and they could go visit with
them at their homes or whatever would be very helpful, because
you just don't know what to do. Every situation is different
and that's why the support group is so valuable, because you
feel like you're all alone sometimes, I know that the people
do, just from helping them; and that no one else is going
through what you're going through, but they find out that they
are sharing common problems. And it's so helpful just to sit
down and be able to talk to it.
The Chairman. Before I turn to Congressman Simpson, let me
turn to all of you and put you on notice so you can be
thinking: Once the Congressman has finished his questions, I
would welcome any of you to come forward with questions you
might have of the panel, or of myself, or the Congressman.
There's a mike at the podium in front of the stage. So you
might be thinking of any questions you might have, additional
to those that we've asked of the panel, or questions you would
like to ask of the two of us.
With that, let me turn to Congressman Simpson.
Mr. Simpson. Thank you, Senator, and I thank all of you for
your testimony today. It was very enlightening to us, and
helpful as we try to make this program work.
First, I'd like to--it seems like we've been in the same
place before, taking care of our parents, and I can tell you
how important respite care is, whether it is from another
family member or from someone who is trained to do that or
whatever, because sometimes people don't realize how stressing
it can be on an individual just to answer the same series of
questions six times in an hour asked by your mother-in-law or
your mother. And I know that when my wife and I both worked, it
was very difficult with her mother at home, and it got to the
point where we were concerned for her safety, because of
something she might do to herself as the condition
deteriorated, and ultimately, came to the conclusion that it
would be best if we could put her in a nursing home, living
center, you know. And so we did that, and within a week she had
died, which was not because of the care that was given there or
anything. But it was very stressful on her also.
And so being able to take care of her at home and having
someone that could come and relieve them for a while so that
you can go away for a weekend or for an evening or for an hour
or something like that is vital.
And this type of service is incredibly important, and not
only is it the right thing to do, it is, I think, cost
effective. When you look at in the long run the amount of money
that we will save as a society by being able to keep people
that we are able to keep and want to keep and want to stay in
their own home rather than put them in more expensive nursing
homes, skilled nursing homes, and other facilities, then better
we are off as a society.
And one of the tragedies I think of our age is that we have
a tendency or have had a tendency to forget about our senior
citizens. It used to be that parents took care of their
children until they grow up, and then children took care of
their parents until they passed away, and maybe it's just part
of today's society that doesn't seem to be the tradition that
exists anymore, or at least not enough of it.
But I do appreciate your testimony.
What kind of training would you envision that a respite
care individual would need? As an example, we have relatives,
we're fortunate enough, that lived around us so that if we
needed to go somewhere where we couldn't stay at the house to
take care of Margaret and those types of things. What type of
training would be involved when you talk about training for
respite care workers?
Ms. Carpenter. Well, we trained--like I said, we used
material, a lot of material, from the Alzheimer's support group
and we had videos on just basic health care, and that's very
important. I happen to have my CNA, which I got just so it
would help me in the respite care program, but if they had
little basic health care or they're CNAs, certified nursing,
that would help so much, because you never know when an
emergency is going to come up and you need to know how to
handle it. Something like that would be very helpful. Even
having a nurse come and talk to them about the basic care would
be very helpful; that would be very, very helpful.
Mr. Simpson. Is there any type of training that you would
envision as an individual, say, as a family looking at the
options of being able to take care of one of their elders in
their home or whether other types of services would be
necessary or whether they needed to go into some type of
assisted living center or some predecision type counseling?
Ms. Carpenter. Yes, that would also be helpful. A lot of
the nursing homes do, I think, provide helpful counseling and
things like that for people. I really think it would be,
because there are so many decisions to make, as you all know,
on finances, on medications, on Medicare, and things like that.
There's just so many decisions to make, and now with this new
program, they will also need to know, what is available. So
things like that would be, yes, invaluable and there needs to
be something set up for that, I believe.
Mr. Simpson. Well, thank you for both your testimony and
what you do.
Russ, you mentioned in your testimony categories one, two,
three, four, and five, and then percentages: 11 percent for
public information and outreach and so forth, and 11 percent
for education management. Is that statutory, is that rule and
regulation, and is that the maximum amount that can be spent in
each of those categories?
Mr. Spain. Congressman Simpson, Senator Craig, no, there's
no statutory provision of what, in each category, needs to be
spent. This is purely based upon in this particular case what
the director in Area Three--this area here--and his staff and
those that he consulted, that is what they feel is the need in
this area.
The only statutory requirement that I am aware of is that
concerning grandparents as parents of grandchildren, that in
the aggregate, up to 10 percent in the State can be spent for
that portion. That's the only restriction we're under.
Mr. Simpson. So if you got an aggregate program of
information, outreach, you've got an aggregate program through
other means--say a case management and stuff--you don't have to
spend as much there. You can spend more in respite care, actual
respite care, and other types of things; that flexibility
exists?
Mr. Spain. That is correct, sir.
Mr. Simpson. OK. I'm glad to hear that.
So these percentages that you gave us are what is in this
Region Three projected. Is that typical from what other
programs around the country are submitting in their programs or
does it vary from area to area, do you know?
Mr. Spain. I honestly don't know, Congressman, but from
what little I know from what the other area directors within
the State is going to propose to the Idaho commission tomorrow,
this would be very close to what we were all doing.
Mr. Simpson. OK. I appreciate that.
Edwin, one: You mentioned that this program you anticipate,
I believe I heard you correctly, assisting 250,000 caregivers.
Is that----
Mr. Walker. That's correct.
Mr. Simpson. With this, that's obviously tip of the
iceberg, I guess. I would think so. Is there any idea, any
estimates, on how many home caregivers there are, family
members, other types of things, other types of individuals that
are giving home health care?
Mr. Walker. The estimate that we have is that there are
approximately seven million individuals trying to care for
elderly or functionally disabled adults, and that is from the
National Long-Term Care Survey, which is updated periodically.
That is the most recent data we have.
Mr. Simpson. So we're looking at maybe one twenty-eighth of
the total, or 28 times as many. Is that right? Something like
that?
Mr. Walker. Something like that.
Mr. Simpson. Four times as many would be a million.
And what's the total cost of this initial program here that
we're looking at?
Mr. Spain. The total program was appropriated at $125
million. That includes both the funding that went to the
States, as well as the funding we're about to release that's
going to establish a similar program for Native Americans
throughout this country.
Mr. Simpson. OK. So we could anticipate if it's successful
and if this program actually works--obviously not everyone
would apply for it or receive assistance from it--but you could
anticipate once this is implemented, some fairly substantial
increases in budget over the next several years. I know that's
a hard thing for a Congressman to ask someone, but we could
anticipate some increases in budget. Is that----
Mr. Walker. There certainly is a lot of need out there. We
are looking at establishing a program right now, one that is
going to be administered by the aging network. As I indicated,
this is a new era for the aging network in focusing on the
needs of caregivers versus the care recipient, and so we think
it is important to establish a very firm foundation upon which
we can build additional populations that are people who receive
care that's not covered by the statute or other aspects in
terms of growing the program. So we look forward to the future,
but want to establish things well first to get a good start.
Mr. Simpson. Right, and I appreciate that.
You did mention that attention was to be focused on those
most in need: Lower incomes, so forth. Are there any
eligibility requirements or, as an example, I didn't need the
assistance and I say that I was fortunate. I didn't need the
assistance to be able to do this. Had the government given me
assistance to do it, certainly, like most people, I probably
would have taken it, but I didn't need it. So are there
requirements, eligibility requirements?
Mr. Walker. I stumble with the word ``eligibility.'' There
are priorities established in the statute for the caregiver
program, just as there are priorities established for the rest
of the Older Americans Act program. We generally refer to it as
``targeting.'' States and area agencies ought to target their
resources to those most in need. And that is how they make
their decisions. It is a prioritization process to determine
who should receive our funding, and we find that the aging
network are very good stewards in that regard.
Mr. Simpson. As long as you have limited resources, the
targeting will be down to where it's necessary.
I do appreciate all of your testimony. This is an important
program, one that I hope we can work together to ensure it is
successful, because I think with the grain of America, this is
going to be even more important in future years as when we're
seniors and retire. As I get closer to that age, I start to
become more and more interested in it daily. So, thank you all.
The Chairman. I thought it was a service of Congress.
[Laughter.]
Well, I have a marvelously efficient staff, and I
understand that they handed out cards in which you were to
write your questions, which would help facilitate it, and then
we would respond to those questions. So if you want to pass
those cards in for those of you who have written on those
cards, we'd appreciate it, and we would be happy to respond to
those questions.
Edwin, you appropriately talked about eligibility criteria
as ``targeting,'' and I appreciate that term. One of the things
that became evident, and I think you mentioned that you had
some capability of finding assisted care for your mother, and
many do certainly, not all need the financial assistance and
that's why we've targeted at the less fortunate. Are there any
sliding scales that you've used for adjustment or for
evaluation purposes as to targeting?
Mr. Walker. Well, in terms of the overall Older Americans
Act and the most recent reauthorization that you assisted us
with last year, has always been based on individuals
voluntarily providing a contribution in order to further expand
the services. And that really is the beauty or one of the
beauties of the Older Americans Act. Seniors embrace this
program. There is a real sense of ownership, because they know
that their participatory contributions go to further expand the
program.
In the most recent reauthorization an additional component
was added, which is to give States the option of implementing a
cost-sharing methodology. That cost-sharing methodology must be
based on a sliding fee scale, based on an individual's income,
not their assets or any property, and that is based on a self-
declaration of the older person.
The Congress also was very clear that there are only
certain services where a contribution in terms of a cost-
sharing contribution could be implemented, and therefore, they
excluded services such as gatekeeper services, information,
assistance, case management, services that assist people just
getting to a maintenance type of service. But certainly we
would anticipate, because we know that, for instance, adult day
care as a form of respite care is a very expensive service, and
so States would have the option of implementing with the
consultation of their area agencies a cost-sharing methodology
to share in the cost of providing adult day care.
The Chairman. Jeff, are you ready?
Jeff Schrade of my staff is going to read the questions.
The reason is not your handwriting, folks. I know that it's all
tremendously legible and easy to read. It's just that I'm
blind. That's the excuse we're offering up.
While you're preparing there, Jeff, let me introduce the
gentleman who rode over with Claudia Turner on my staff and
that's Art Bell, who's a commissioner for the Idaho Commission
on Aging.
Art, nice to see you, and thank you for being with us.
[Applause.]
All right, sir, if you would, please.
Mr. Schrade. All right. Under current Medicare rules, J. R.
Simplot pays the same as an elderly widow on minimum Social
Security. This results in doctors opting out, HMOs dropping
out, and those doctors who still accept senior patients being
overworked and underpaid. Why doesn't Medicare have graduated
rates so that better care is available to all?
And they have a few more comments in the back: We have a
friend, retired nurse, who has enjoyed helping as a respite
volunteer, but I'm being told that rules prohibit any patient
help such as bathing and other nursing activities. She quit.
Being limited to housework or doing merely dishes by dumb rules
when a person is fully qualified and experienced is an
unexcusable waste. Can you help change this rule?
The Chairman. We want to respond to that question, but part
of it really does not have anything to do with the caregiver
provision. What I might do, because we do want to accept your
questions and respond to them, or have the panel respond to
them, but at the same token, the hearing record specific to
this, let me do this: Let me close out the hearing so that the
hearing record will be complete, and I'll do that by the
adjourning of the Committee, and then we will proceed to
respond to your questions.
So, with that, I will close the Senate Special Committee on
Aging hearing on Caregiving, and I will call that closed.
[Whereupon, at 4:30 p.m., the committee was adjourned.]
FORUM ON NATIONAL FAMILY CAREGIVER PROGRAM
----------
FRIDAY, JUNE 1, 2001
U.S. Senate,
Special Committee on Aging,
Idaho Falls, ID
The committee met, pursuant to notice, at 10 a.m., in the
Idaho Falls City Council Chambers, Idaho Falls, ID, Lupe
Wissel, staff director, presiding.
Ms. Wissel. Good morning. This forum was scheduled to start
at 10 o'clock and I believe it is 10 o'clock. My name is Lupe
Wissel and I'm here on behalf of Senator Craig. Senator Craig
would have been here today, but he's had quite a busy, busy
week and he sends his regards to you.
First of all, on his behalf, thank you for attending the
Senate Special Committee on Aging hearing on the National
Family Caregiver Program. Before I start, I would like to
introduce the people here in front. To my right we have Lisa
Kidder, and she's worked for Senator Craig for a number of
years, doing health issues; and now she's working for the
Senate Special Aging Committee on Aging and still dealing with
health issues. To my close right is Janine Scott and Janine is
an attorney handling pension issues Social Security, Medicare,
and prescription drugs. To my left we have Robert Lundblade,
and he is a caregiver that will be testifying this morning.
Next to him is Russ Spain, director of the Area Agency on Aging
here in Idaho Falls, Area Six. And to the far left is Ken
Wilkes, and he is the Program Operations Manager for the Idaho
Commission on Aging. And thank you, all of you, for being here
this morning.
Last year Congress passed legislation reauthorizing the
Older Americans Act. Senator Craig was an original co-sponsor
of that legislation which updated and amended the Older
Americans Act and he was extremely gratified when it became
law.
As part of this reauthorization, Congress added a very
important component, which was the Family Caregiver component,
which authorized $125 million for family caregivers to assist
those many daughters, sons, husbands and wives who are
struggling with the daily task of caring for the older family
caregiver--for the family member. When considering the
reauthorization, Congress heard overwhelmingly from caregivers
themselves about the need for this service and that's why they
all concurred and they all supported. It was a very bipartisan
issue and one that was supported across the board.
However, the things that Congress heard from the caregivers
were three very important services, which are the need for
respite care, which provide the caregivers with that relief to
be able to take that very needed time off, time for themselves
so that they can continue doing the work that they do on a
daily basis.
Second, they talked about education, the need to get the
information on how to provide for those needs, the care giving
needs. Information such as what to do in case of emergencies,
how to assist with the daily needs and even sometimes what kind
of diapers to buy, when those are services that the senior
needs. That was one area that was overwhelmingly voiced.
Third was the support and counseling, just a need to be
able to talk to someone, to be able to get that counseling
because of all the stress caregivers experience on a day to day
basis.
The State's just received the funding and they're in the
process of planning as to how the money is going to be spent.
They are in the process of sending the money to the local
communities and so that's why Senator Craig is very interested
in making sure that the money does what Congress intended for
the money to do. That's the purpose for holding this hearing or
this forum and traveling throughout the State of Idaho to
discuss what the States are doing. Are they getting the
information that they need from the Administration on Aging and
just making sure that the most money possible goes to the
caregivers themselves.
With that I would like to go start the forum. We will start
with the caregiver. Then we'll go to the area agency to talk to
us about where they are in this process, then we will conclude
with the State Program Operations Manager. We will then allow
for any of you who have questions, to ask any of the panelists
up here, to ask those questions.
We have a microphone right up front. All of the information
will be recorded today and will go back to Washington and
become part of the record with the Senate Aging Committee. So
with that, we will start with Robert Lundblade a caregiver that
will share his story. This is what the program is all about,
Robert. So thank you Robert, for being here this morning.
STATEMENT OF ROBERT LUNDBLADE, CAREGIVER
Mr. Lundblade. I was called upon to come and testify for
caregivers. It's an important thing and I don't know if I'm
really a qualified man to do that but caregiving is very,
very--particularly in the home--is a very important part of our
life. Now to be a caregiver, how did you get this name? I'm
going to go back a few years; what happens.
You have a wonderful life and then all of a sudden, you
find out that you're 75-years-old and you've been down to St.
George, you've been playing golf and looking at the beautiful
scenery. You have your wife with you. The world is fun all the
way around you. And so you notice that your wife starts to have
a little trouble with walking and things like that.
You go to see a doctor. Well, after surviving with her and
myself, I got two artificial hips and she's got an artificial
knee and osteoporosis, we decided to go see the doctor and take
care of the--she had one knee put in, to have the other knee
put in. And we were sitting on the chair there and the doctor
looked at her, the x-ray's right in front of her. And he said
one half of her knee is gone. You could see it on the x-ray. So
he says Marion, he says, I'm not going to operate on that knee.
Just like that. I'm going to send you to another doctor.
Just like a glass plate slipped down in front of you. Then,
when it all begins. I had a lot of confidence in the other
doctor because he helped my brother-in-law. He had been very,
very sick and he took him in and I stayed with him that night
and I didn't think he'd make it through the night. The doctor
come in, pair of cowboy boots on. I looked at him, looked at
his chart and said what are they giving him that for? That's
not what's wrong with him. I was busy with him, my sister was
distraught out in the waiting room. He give him the medicine
and the next morning, my brother-in-law woke up and said,
what's all the fuss. But I had confidence, what I'm trying make
my point, in this doctor.
Well, he sent me over to her and he examined her and looked
all over and he says well, I think maybe you, with the
osteoporosis and that and the operations you've had, you seem
to be getting a little on the confused side. He said, I want to
send you back home with B12.
And so he gave me a bottle of B12 vitamins to send home and
he gave me some needles and he says give--once a month, give
your wife a shot of this and this will help her. And it did. I
tried to give my wife the B12 shot and she'd seen me vaccinate
too many cattle and she said no, so that got to be a problem.
I tried to get a doctor or somebody, had to make an
appointment and go wait to get a B12 shot. I asked some people
that worked for the government if they were friends and they
obliged me, I feel. They never said so but I believe, unless
they were told they could give shots, not to do it on account
of I assume insurance and responsibility.
Then that wasn't bad enough. We get that taken care of,
then the doctor we were going to, they refused to take Medicare
and they just like the other doctor would throw you out. I had
no place to go because it was Medicare and we had put our faith
in family doctors. And so with my wife, she'd had a lot of her
female problems and we moved and I went to another doctor and
he took her in and took care of her and helped her with her
problems.
And then you get the B12 shot. I had to walk a long
distance into the doctor's office to get it and pay him $10 to
get a shot. And then the new doctor I went to, we could drive
right up to the door and get the shots. And she has to have
them. I could tell when she's out of it. She has to have it
about every 3 weeks.
But that's where it all started from. And that's the reason
I relate to that. And from that point on, as we come on down
the path of life, you have to change your plans. You were
having lots of fun and everything and all of a sudden--you have
to excuse me a minute. So you learn in a hurry when you get in
that kind of a situation, that as long as you're caregiving,
you have to be a master chef, you've got to put meals on. You
have to keep everything clean and make sure it don't get an
infection. You have to--the world just comes down hard on you.
And so with that in mind, your life completely changes with
what you've been doing and so you just make the best you can.
Well then the question was related to me then, the impact
on your life. I've explained some of it. For a man to take over
the house and most women don't care about you running the house
anyhow, but you have to do it. And so you just busy yourself
with your time, maintaining and keeping up and seeing that your
wife is comfortable and try to find something that will make
her better. And so this is one of the hardest things I've had
to do is planning the meals and see that she gets a balanced
diet.
I've always had to take care of myself. My father told me
years ago, he said you learn how to cook because you may never
have a woman along with you to take care of you. So we learned
to take care of ourselves. But it's just a different way. And
as it progressed along that path, we done pretty good. We
changed the way of going to town. I got a van that has both a
heater in it and an air conditioner in it now. A separate air
conditioner, because I have to keep my wife with me 24 hours a
day. So you change your whole status of life. You start just to
fall apart and everything just concentrated on what's going on
in life.
You have to--and you find out that though--when you take
care of them, you have to simplify the toilets; you have to
simplify the beds; you have to get everything as handy as you
can. And also carry communication with you, particularly with
myself, I carry my phone with me when I go out alone. With the
hips, I can trip and go down. If there's a fence close by, if
I'm all right, I'll crawl over to the fence and get up. But I
can't get up.
Unfortunately, when you put the hips in you get--you get a
spot that's kind of dead, a spot like the old steam engine. If
you started it up with the piston on the wrong side you go
faster backwards than you do forwards. But anyhow, if I go down
I either crawl to a fence to get up, but that's because I know
I have to go back to the house, because she can't help me. It
does run into a 24 hour a day surveillance.
Other than that, your life changes. I'm not crying about it
or anything because you do it because you want her to be
comfortable. I put these in here because you can see, I get a
little bit upset.
Now the next question that was brought into play was why
did you want to keep her home and not take her to a nursing
home. Unfortunately, I'm trying with my wife, if she's got any
chance of getting better because I haven't had a doctor yet
tell me exactly what's wrong with her but she's under treatment
for deep depression at this time. And her Paxil, I gave it to
her. I wasn't ready for the Paxil. I had another woman to
contend with when she went on Paxil, but it was a lot better.
She never had such long peaks and lows. More or less leveled
out. Made my life much easier to work with her. And that, I
see, improvement and we're going to go in June 20, and check on
her with a neurologist to see what's going on.
But keeping her home, you keep her, in her particular case,
in familiar surroundings. That helps a lot. I make sure she has
fresh flowers in the house.
We talked to nursing homes. I've been around nursing homes,
unfortunately, and I had my father in there and he was 90 years
old. And he got so he couldn't take care of himself. They're
wonderful. They're wonderful and everything like that but
unfortunately--I've been a clown for the shrine for years and
we have put on clown suits and we've gone into nursing homes.
We've gone into rest homes. We've worked with the retarded, the
special kids. I'm sorry, I shouldn't have said retarded. The
special kids down through the years and the crippled kids in
the shrine hospital. I do this to bring some happiness to those
people there.
But I find when you do something like that for them, you
can make people on the happier side of everything. It gives
them some ease when you give people a badge and a little
sticker to put on them. And believe me, don't try to take it
away from some of the older people. But I do--just the care
giving, I've done that just to make people happy on things.
It's a real lesson learning in that, to give and try to help
people. But that's what we're here for is to make this a
happier world and more pleasant and keep people comfortable.
But it's just one of those relations. And being a
caregiver, that's what it comes from. You do it all the time.
You can't even take care of your being a farmer and being a
caregiver. You have to take care and feed stock, so you come by
it naturally. And that takes it then to the training.
I've more or less had to train myself to do a lot of things
and I've taken physical therapy and been that way. Thank
goodness we have physical therapy. It's the best way to go.
It's to keep moving, to keep exercising. I have a lot of
respect for them. But you learn a lot, for the training part.
That was in the question here. You learn to care, you learn to
feed. And being a stockman, a cattleman, you learn to observe.
And when you learn to observe--because the cattle, they can't
tell you what's the matter with them. You have to see it. And
you have to see it that they got a balanced diet. And so it's
just being a good herdsman and that is the training that I've
got down through the years to care for my family and caring for
my land and care for the farms.
Now there's the question that comes up about the government
programs and financial, social things. I really can't relate to
much of the government programs as far as a lot of them. It's
real complicated. But I do know this much, that if we didn't
have some of these organizations, it would be real chaos at the
older level. Because we're getting more older people all the
time.
With this--I have been, with the homemakers here, the
respite thing. I've gone into several of the meetings. It's a
real awakening when you go into one of those meetings. The
people, caregivers, what they do and what it is, the emotions
that come to it. And you get to the point and listen and sit
through there, what they're saying you can relate to but you
can express yourself, you can let off some steam.
The unfortunate thing will come when you start being a
caregiver in the home, is you lose your friends. They like you
but they don't want to listen to you. You need somebody that
you can talk to. And this respite deal is you can relate to
people.
I have a lady that's been helping me with my accounting.
Her husband's very sick; she has to feed him and everything's
by tubes. Now, I'm not a nurse, I don't have to be a nurse, or
anything, because the wife can pretty well take care of that.
But this gal has--if she leaves somewhere, she has to have a
nurse to stay with him. And I asked her why don't you put him
in a rest home or something. She said well, it's $4 thousand
and she says, I can't afford it. And she does a beautiful job
of it. Her load is heavy but she told me, she says I had
friends everywhere and I lose my friends. And this is where the
lonely part comes.
Another question was asked here, what programs do you seek
for treatment and things like that. Well, I mentioned we have
the respite, but I did take and get into the physical therapy.
And then another thing is you can't raise a family without
getting some knowledge how to keep going. And then too, you get
into programs. You have your churches and in my case, the
lodge. And in my case, I can let off steam if I can get loose
to put on my clown suit and put a smile on somebody's face.
When I was having my hips put in, I got a course in
ventriloquism, just to pass the time. And it's fascinating.
It's real fascinating and I wished I had time. I wished I was
better at it. But you put the clown and the ventriloquist, you
can put a lot of smiles and a lot of happiness in this world.
The other thing is that caregiving is a gift. And let's
help the ones that can be treated at home with friends.
Caregivers need your support. We will get more for our money
and a lot less tape if you keep your loved ones where it's at
home and put them in a peaceful surrounding.
I've noticed when I've gone into the rest homes and people
like that, they're under locked doors. They keep them back; and
I'm not about to do that, yet. And that's all I have to say.
It's a rugged life and I'm glad I've got the homemakers to help
me get out of tiring situations. That's all I have to say. I'm
sorry.
Ms. Wissel. Robert, thank you so much for sharing your
story with us. And you mentioned earlier, the story you just
said, it's what Congress also heard from around the country in
regards to the needs. The need for the respite; the need for
the counseling; the need for the support; the education; the
training. But thank you so much for sharing that.
Mr. Lundblade. Well, I hope I've helped somebody.
Ms. Wissel. You have. Our next witness is Russ Spain, and
Russ is the Area Agency Director in Area Six, and he will talk
about where he is in the process of developing the respite
program or the Family Caregiver program in his area. Russ?
STATEMENT OF RUSS SPAIN, DIRECTOR, AREA AGENCY ON AGING, AREA
SIX, IDAHO FALLS, ID
Mr. Spain. Thank you. And thanks for the opportunity to
testify this morning on the National Family Caregiver Support
Program. As you're well aware; and as was mentioned yesterday
at the hearing in Caldwell, the plan that I'm going to outline
today is sitting at ICOA this morning, waiting for their
approval. Let me begin by giving just a bit of demographic
information.
The Area Six Agency on Aging covers the nine counties of
eastern Idaho. Those nine counties comprise 20,000 square miles
and have about 21,000 residents who are 60 years of age or
older. So this area is definitely rural in nature. And as you
are well aware, just to provide service to a senior in Lemhi
County, it's a 3-hour drive each way from our offices in Idaho
Falls.
My remarks will focus on how we at the Area Six Agency on
Aging plan to implement our portion of the Family Caregiver
Support Program. Our program allotment of the funds amounted to
$52,911. We have determined, and nationally that seems to be
the case, that education is one of the needs of caregivers. To
that end, 26.7 percent of the award will be used for
information and assistance. That will allow the I&A director to
be more involved in the community, providing the needed
education components.
In addition, the Area Six Agency on Aging has had a
caregiver support group in place for a number of years. And
actually, Robert is part of that group and he referred to it
and I have to add that I understand I was not there at the time
but I understand he did put on his clown suit for one of the
caregiver support group meetings, and it was one of the best
meetings that they have had in a long time. He did bring some
laughter to that group.
The National Family Caregiver Support dollars will allow us
to do a bit of promotion of the fact that the group exists and
to attract speakers and training on topics that will be of real
use to this group of caregivers. We haven't had that in the
past. So we've therefore designated 7.6 percent of the funds to
support that group.
One of the opportunities that we took when we first learned
that the National Family Caregiver Support Program was funded
was to prepare a survey that we could give to our caregiver
support group to obtain their input into the needs of the area.
The overwhelming response was that there was a need for
respite. Therefore, we're allocating 55.7 percent of our funds
for respite to be added to the contract of our respite Provider
Homemaker Services of Idaho. We are also requiring of them that
at least 10 percent of those additional funds be used for after
hours respite, weekend respite and emergency respite.
Our I&A program has been receiving calls for a number of
years concerning grandparents as caregivers of young children
and what services are available. The University of Idaho
extension offices in the area have also been studying this
phenomenon. We have opted to spend the full 10 percent allowed
in the National Family Caregiver Support Program to establish a
grandparents as caregivers of young children support group. The
funds would be used to locate those individuals and solicit
their participation in such a group.
In addition, we will use a portion of the 10 percent to add
to our legal assistance contract with Idaho legal aid to give
legal assistance specifically to grandparents as caregivers of
young children. Legal concerns as they relate to caring for
young children by a grandparent is the major issue we hear
about from that group.
You should know that according to Child Protective
Services, where young children have gone through the court
system in some way, to end up with grandparents as caregivers.
There are only 75 grandparents as caregivers in the nine
counties of eastern Idaho. And only five of those grandparents
are over age 60. We know there are more than that who are
caring for young children but are lucky enough, if you want to
say that, to not have had to go through the court system and
are over 60 years of age. We will be turning to school
districts to help us find those grandparents who may need our
help through the National Caregiver Support Program.
In closing, I would just like to applaud the Administration
on Aging plan to allow States the maximum leeway in
implementing the program in their States to do what will best
serve their constituents. This is not a one size fits all
situation. What works in an urban sitting may not work as well
in rural areas and vice versa. If the AOA and State units on
aging, like the Idaho Commission on Aging, allow our agency to
implement what will work in Idaho Falls, in Salmon, and
Rexburg, and Challis, while at the same time allowing Area
Three to do what will work in Boise, and Nampa, and Caldwell,
our citizens are the better for it.
Thank you for this again, for this opportunity to testify
before you and let you know what we in eastern Idaho are doing
with the very valuable program that you and your colleagues had
the foresight to add to the Older Americans Act. Please
continue it and the other Older Americans Act programs and
adequately fund them so that we can serve those baby boomers
who are going to be seeking services in the not too distant
future, including myself, I might add. Thank you.
Ms. Wissel. Russ, thank you. Now we have Ken Wilkes from
the Idaho Commission on Aging. Ken.
STATEMENT OF KEN WILKES, IDAHO COMMISSION ON AGING
Mr. Wilkes. Thank you, Lupe for the opportunity to testify
this morning on this important new program. My remarks will
focus on the implementation on the program here in Idaho,
including the service package and time lines for beginning the
delivery of these much needed services. I will also comment
briefly on the assistance and guidance we've received from the
Administration on Aging in implementing the program.
We received notification of Idaho's allotment of $564,300
and the first written guidance from the Administration on Aging
on January 7 of this year, and our notification of grant award
a little over a month later on February 20. Soon after
receiving the information from AOA, the commission staff began
discussions about how we would implement the program and we
prepared a Power Point presentation for our upcoming commission
meeting and meeting with our area agency directors, which was
held February 14 and 15.
At the commission's business meeting February 15, we
presented a plan for the design and implementation of the
program and requested the support of our commission. Our plan
called for the formation of a small work group that included
three family caregivers, a member of our commission, one of our
area agency directors and a representative from the Hispanic
and Native American community.
Our work group met twice, once on February 28, and again on
March 14. Our first meeting covered the following: We reviewed
the 2000 Older Americans Act amendments pertaining to the
Family Caregiver Program and also reviewed the guidance we'd
received from the Administration on Aging. We included in that
meeting a telephone conversation with the Region 10
Administration on Aging administrator and his staff in Seattle,
to discuss questions regarding the program and the questions
were made official in a letter dated March 7 to the
Administration on Aging. We listened to a presentation on
grandparents raising grandchildren and also listened to some of
the experiences of the three caregivers that were included in
our work group.
Our second work group meeting focused on a review of
concerns and issues raised by our area agencies on aging. We
discussed some cultural caregiver issues presented by our
Native American and Hispanic representatives and then we had a
discussion of the most needed services identified by our three
caregivers. And finally, we reviewed a draft application form
that our staff had prepared for area agencies to submit to us
in order to receive these funds.
The draft area agency application form was sent to the area
agency directors and discussed with them on a telephone
conference call on April 4, before it was finalized and mailed
to them in mid-April. These applications are due today. I'm
glad to hear Russ has submitted his. Until we receive the
applications, we won't know exactly what service packages the
area agencies are proposing. However, preliminary information
indicates the area agencies will be proposing to use the funds
primarily for information and assistance, case management, and
respite.
The three caregivers in our work group identified respite,
including adult day care, caregiver education and training and
support groups as the services that would most benefit them
directly. We plan to award funds to the area agencies by July
1, and shortly thereafter, services will begin.
So as you can see, Idaho has moved quickly to design and
implement a program that we feel will be a model for other
States. We've received telephone calls from a few other States
asking how Idaho was planning to implement the program and it
appears that we're well ahead of the implementation curve.
I'd like to close by saying that our regional
administration agency on aging staff has been very responsive
to questions we have raised, both in writing and by telephone.
Our acting director attended a meeting in Seattle on the April
25, that included a video conference with Administration on
Aging central office staff in Washington, DC., and in that
conference, it addressed reporting requirements for the program
and provided information on existing Family Caregiver programs,
programs that were in existence prior to the Older Americans
Act Family Caregiver Program.
At the Seattle meeting, AOA staff said they wanted to allow
States maximum flexibility in implementing the program. In
addition, they have provided a list of frequently asked
questions and have provided answers to those questions. The AOA
website has also been helpful and an AOA sponsored conference
on the program is scheduled for September 6 and 7 in
Washington, DC.
On behalf of the Idaho Commission on Aging, I'd like to
thank Senator Craig for bringing the Senate Special Committee
on Aging to Idaho and for the opportunity to testify here
today. I think it's important that the committee come to see
how it's going to be implemented in a rural State. As my
testimony indicates, we are well on our way to providing solid
support for Idaho's growing number of family caregivers.
Our goal of the Idaho Commission on Aging and its six Area
Agencies on Aging is to provide the most needed supportive
services to family caregivers that will enable them to continue
to care for their elderly family members in their homes and to
prevent or delay more costly institutional care. We are
committed to meeting the congressional intent of this program
and work with your committee to be responsible stewards of
Idaho taxpayer dollars that support this program.
I would also like to thank Senator Craig for his support of
the 2000 reauthorization of the Older Americans Act, including
this new and important program. Thank you and I'd be happy to
respond to any questions.
Ms. Wissel. Ken, thank you. We heard from you yesterday and
also from Russ and so both of you are becoming quite
experienced. Thank you very much. It's been great to hear how
far Idaho is in this process. I know many States are
struggling. They're having a difficult time getting going, so
it's nice to see that Idaho is this far along to get the
program going.
We have some questions here, but we would like to also
provide our audience with the opportunity to ask any questions
themselves. We have a microphone here right in front of us. If
anyone has a question for any of the three panelists up here or
even for us in regards to the National Family Caregiver
Program, please just come forward and do so.
And we'd like to keep the Q and A directed to the Family
Caregiver program. And then what we're going to do, once we
complete the Family Caregiver portion we will close the forum
and we will then take any questions that you may have in
regards to, anything, that has to do with the older population.
Whether it's about Medicare, Medicaid, Social Security,
prescription drugs. We'll have those discussions after we
finish with the forum. So with that, if anyone has any
questions for anyone up here, please come forward.
I will start with a question and it will go to Robert.
Robert, your story was quite touching, but that's a story that
we've heard from many caregivers. The struggles, you make your
plans, and then something happens and the plans have to be
changed. Of course it's a difficult change and there's so many
things that are going on during those changes. If you could
design the program yourself and you heard about the priorities,
what would you see the most important component of the National
Family Caregiver Program?
Mr. Lundblade. Well, I still maintain that we should keep
people at home and have proper people see that they're taken
care of and keep them out of the system that we've
unfortunately got in the hospitals and the care centers. And
like you said, baby boomers are coming. I'm going to tell you,
it's going to have to be looked after. But taking them out of
the home and having somebody else take care of them, is a
difficult thing. I don't know just how to express it.
With me, you just care too much. You try to do as much as
you can for your loved one but I'm no fool either, when you
can't take care of them. And I'm no nurse and thank God I don't
have to be a nurse but you still have to be clean. You still
have to have safety devices and you still have to have good
food and balanced meals. And even if they don't want to eat it,
you have to see that they eat it. I'm lucky because my wife can
take care of herself and can feed herself and everything like
that.
But a lot of people aren't that--I tell you, when you run
into people that some of the--they have to take care of them, I
don't know how they hold up under it. But they do keep them
home and they do help them. But if we don't get back and keep
them where they're in more familiar surroundings rather than
just a cold hard facts of care, government care, it's going to
be a sad world. It's coming.
Ms. Wissel. What service would help you continue doing the
things you've been doing and providing the work that you've
done, we want to keep you healthy as well.
Mr. Lundblade. I find out with what I'm working with now,
the health care social system here, they have things in line
that can help you with, and that. I haven't had to use them
because I feel like I could do a lot of it myself yet. I
haven't had to call on a lot of other people because I've been
trying to make sure. If anybody can make her happier and help
her, I can, and I'm familiar with her. They've got in place,
I've talked to the respite and they've got the things you need,
as I get into it a little deeper. I'm not into it as deep as
I've had to I just never had to do it because I figure I can
take care of myself.
I'm an independent rancher. This respite deal, you can have
somebody to talk to and somebody come in and guard the people
and get some help. I think it's the way, as far as I'm
concerned, it's the way to go, is keep them with the loved ones
and give them some help. Shoving them off into a--I've been
down that road. I've watched too many of them just come and get
them and drag them off and put them in a hospital.
This respite--I'm just getting into it. I'm not too
familiar with it and it's a lot deeper program than I thought
it was. I just wanted someplace I could go and be with people
and see if there's anything easier, make my life easier or make
other people's life easier and how to handle a situation that
comes to you.
I'm sorry. When I was a young man and the folks were around
and that, we didn't have something like that to help them. But
we were trained to take care of our folks and I stayed with
them. They wanted for nothing with them. But now, it's just
throwing away, let somebody else worry about it. But let's keep
them--I realize that this program that they're working with is
the right way to go. You get more bang for the bucks.
Ms. Wissel. And you do. If we were to pay for all of the
caregiving that's done by family members, the government could
not afford it.
Ken, I have a question for you. Do you feel that you have
gotten the appropriate assistance, technical assistance, from
the Administration on Aging?
Mr. Wilkes. For the most part, yes, particularly from our
regional office. You know, you've asked me that question in
prior hearings this week. I've thought a little bit more about
it and you know, I guess what would really have been helpful is
the bill was passed in what, late November, I believe, and as I
thought about it, it wasn't until February before we ever
received any guidance or information about the program. And now
it's going to be July 1, before we will have money actually in
the hands of the area agencies.
And we're ahead of a lot of States. So some States, it will
probably be a year after the bill was passed that included this
program before it's actually implemented. So I think once the
guidance started coming out in February, we've received pretty
good direction and information and answers to questions we had,
that have been provided. But it took close to 3 months before
that started to happen.
Ms. Wissel. Now I know that Idaho received approximately
$564,300, just over half a million dollars. And you say that
program funding probably--when you look at the need, that may
not be enough. You're looking at the program just being
implemented. Do you believe that you're going to be able to
spend all the money this fiscal year?
Mr. Wilkes. No. I'm sure that the area agencies will be
carrying over money from this year into the second year because
of the delay in getting the program implemented.
Ms. Wissel. OK.
Mr. Wilkes. And we have discussed that with the area
agencies. In fact, as you know before you moved on to
Washington, DC., we had implemented a new policy that only
allowed 10 percent carry over. I think with this program,
because of the delay, it would make sense to limit that 10
percent because all six area agencies will have, I'm sure the,
money unspent from this year and so we will allow them to carry
that into the second year.
Ms. Wissel. Did you need to add something to that, Russ?
Mr. Spain. No, other than just to agree with it.
Ms. Wissel. You said in your testimony that you have
elected to use the full 10 percent allowable for programs aimed
at grandparents, grandparent caregiving. Why did you decide to
use the money this way and how great is the demand for the
grandparent caregiving assistance?
Mr. Spain. We decided to use it that way because actually,
within the last several months we have begun to receive an
awful lot of calls from grandparents, asking what programs
might be available or they're calling our information
assistance office with other questions. By the way I have my
grandparent and my grandchildren with me. Is there anything
that is available for me to help in that way? And we have also
received some calls to our case management and adult protection
concerning children who may need to go into grandparents'
homes.
So we decided to at least use the money, the maximum amount
here to find out what kind of--use it to survey the area, if
you will, to find out what kind of numbers we're dealing with
here, because we really don't know. We don't believe that those
five people that I testified about that are over 60 are the
only ones in the nine county area. From the calls that we've
received, we know that there are a number more than that.
And we wanted to begin to set up some sort of support group
for them, much like the caregiver support group, so that they
can talk with one another and do some peer counseling to at
least help one another find out what they may do to help one
another solve individual problems and to bring some people who
have some expertise in various areas to help them.
And we're also going to use some of the money, some of that
10 percent to add, as I mentioned, to our contract with legal
aid because the questions that we are getting, for the most
part, are dealing with legal issues that grandparents as
caregivers--that we can't answer. Only an attorney or the legal
system can.
Ms. Wissel. Ken, one more question for you. You heard
Senator Craig talk about, this program just being implmented
and of course, the interest is to make sure that it meets the
intent. He also wants to make sure that you're getting the
proper guidance. But he has also mentioned that this is a new
program and has indicated an interest in revisiting the program
once it's well on its way, maybe in another year from now. Do
you or does the commission, have any plans to implement any
type of outcome measures so that at the end you can actually
show measurable performance outcomes on this particular
program?
Mr. Wilkes. Yes, Lupe. In fact, I think it was what, about
a couple of weeks ago we, as staff, met to revisit the outcome
measures that we have for the other programs and in that
meeting we began some discussion about the need for outcome
measures in this program. We have sort of general feel for what
we might do in terms of outcomes but we really need some time
to work on it.
I don't think we will have any to measure this first year
but as we move into the second year, which as you know in our
case is a calendar year, we'll have some outcomes in place come
January. The Administration on Aging in the reporting is only
asking to report outputs, units and unduplicated but I don't--
although I've heard them talk about having outcomes, I don't
anticipate that happening anytime soon. So we'll have to
develop our own.
Ms. Wissel. Russ.
Mr. Spain. I would just like to add, I think, and in this
case I may be talking not only for this area but probably for
other areas. I hope that Congress and the Senate and AOA and
the Idaho Commission on Aging will realize that what we are
putting together in this area agency, for instance, for this
year, what that program is and what it may look like 2 years
from now, may really be two very different things. Because
we're going to learn through this process and things may or may
not work and we may need to change directions and do something
totally different, and I'm glad that we're given the
flexibility within the context of the Family Caregiver support
program to do that. If it doesn't work, let's not do it. Let's
not throw that money away. Let's put it to where it is doing
some good.
Ms. Wissel. I think you heard yesterday, there's been a
question at all the forums that we've attended concerning some
inflexibility that you had heard Ken, from Administration on
Aging in regards to funding the five different areas.
Yesterday, if anything, this was clarified. You heard that this
is not the case. That you do have the flexibility that you need
and do not have to fund a program that is not needed. So I
think something positive has come out of these forums this week
that is to ensure that you do have that flexibility to tailor
the program to meet the needs of your own community.
Mr. Wilkes. Yes. That was really helpful to have Edwin
there yesterday to clarify that for us.
Ms. Wissel. Do we have any questions from the audience or
did we pass out any cards? Are there's any questions that you
want to write down? You might not want to come up to the
microphone but feel more comfortable writing it. You can do so.
Mr. Steele. Madam Chair, I have a question for Mr.
Lundblade.
Ms. Wissel. I'm not a chair, I'm the staff director.
Senator Craig is the Chairman. But please come forward to the
microphone.
Mr. Steele. And this is a broad question and posed mainly
to Mr. Lundblade. I've known Bob all my life and I know the
personal problems that they've gone through. As a State
legislator, I was never really involved in aging programs. We
in fact never had programs starting out may or may not have
been funded one year; they weren't funded the next year. As a
county commissioner, I have found that there is a definite need
here in Bonneville County. And personally, I have tried to find
out why the elderly couples that are living alone won't ask for
assistance and there are many of them that wait too late. It
just seemed like until they reach indigent status, they don't
want anybody to really bother them.
Probably the most thing that I have found, these elderly
people cherish their independence. When they went through their
family raising programs, it was you either did it or you did
without. And the second is the fear of separation and the
third, and I think Russ can explain this, is the lack of
knowledge of a program.
I think those three programs and I don't know how to end
it. As a director on the Seventh District Health and Welfare, I
know that there are people that have approached these problems
over and over again. And until the last few years, the funding
wasn't available in the amount that it needed. And as Ken has
indicated here today, we have funding available but we don't
have a program to use it. And I think all of you understand
that when you turn back funds in a program, the next year
you've got to prove that you could have used it the prior year
or there will be a deletion in the funds. That's just the way
it works.
I applaud what Senator Craig is doing here, and this is a
program, I feel, that has been long overlooked as far as the
overall picture, in my role now as a county commissioner. We
have received more indigent, more elderly people. They come in,
they ask for help as indigents. They're embarrassed and perhaps
even after they've made the application, they won't follow
through. They go home and for some reason or another, it
doesn't happen. I applaud you for being here and I applaud the
program.
Ms. Wissel. Mr. Steele; correct?
Mr. Steele. Yes, ma'am.
Ms. Wissel. You're absolutely right. And that's what I
think Russ and Ken, need to hear. They need ideas, as to how to
get the word out and how to get people to access the services,
because that's been an issue. I've been a State director here
in Idaho for the Aging Commission this has always been a big
issue. The pride, comes into play. And we don't want to take
the pride away because that's something that you need to keep.
What you're doing, caring for your loved one, is something
you want to do yourself. In many cases and there are statistics
out there that show the caregiver ends up dying before the
person they're caring for because of the work, the stress, and
all that they go through. How can we get that word out? How can
we get them to access this very needed program that everyone
agrees is a very important program to care for the caregiver?
The senior's being cared for but the caregiver also needs that
care. How do we do that?
Mr. Steele. I think Russ was absolutely right. I believe
it's a process of elimination. When we start out, we find it
didn't work; we do something else. This is the part, as Ken has
indicated, where funding will be available. Some years we might
not use it, some years we might not have enough. So this whole
program, this whole program is dependent on finance. I think we
all understand that. And if we can't get a program in place
quickly enough to utilize the money that's being allocated to
us, then we're going to lose part of the program. Because this
is just natural politics. When you turn money back, you
jeopardize that money that's turned back. Thank you very much.
Ms. Wissel. Thank you. That was Ralph Steele, and he is a
former State legislator and he is a county commissioner now.
Anyone else that would like to ask a question or make a
comment?
Mr. Lundblade. I might make one statement. I'm from the old
stock and I'm independent and with Ralph back there. Ralph and
I know where we've been. We know each other. But I come from
families that are independent. My grandmother, I guess,
wouldn't even accept charity. It was an insult. And that's
carried down through us. But we're a farming community here, we
used to be. Not so much that anymore. And yesterday I watched
some of the desert burn up. It's unfortunate but we're a strong
people and we're a family people.
We're getting with the baby boomers. They have a little
different--it's coming. I don't know how they're going to cope
with it but because they're going to get hit into an area that
they're going to be in the same shoes as I am, as I stated
early on. I woke up and I was 75 years old and been married for
55 years. Hey, you're starting to waste away.
But in answer to his question, we are. We took care of
ourselves, we took care of our stock. We took care of
everything. We took care of our land and kept it private. You
feel nervous about going and asking somebody for favors. I,
fortunately, I haven't asked for--I don't need any particular
money favors. I'm not asking for that. But you need some
guidance is what, and the place to go without getting so
wrapped up and somebody that will level with you and tell you
what it is.
I, in my life, cannot believe the run around that we get
from this new generation. And dammit, if the computer breaks
down, they can't add. [Laughter]
Ms. Melgaard. I'm Wendy, I'm with the Homemaker Services of
Idaho. I'm the executive director and one of my goals right now
is completely addressing what he was talking about, is
promoting the programs that we run. My agency runs the
homemaker program, respite program and outreach services for
the visually impaired. And if anybody--you know, part of what
I'm doing is there's been a little bit of a change in the
board. I'm working on getting people that have media or those
kind of backgrounds to help me with that promotion. And if you
have ideas on that, I would love to hear what your research is
because I want to be able to connect to that senior population
and let them know what our resources are out there because I do
think that a lot of them don't know.
One of the things that we're looking at is maybe changing
the name of our agency, which is Homemaker Services of Idaho,
because we're finding that people think we are housewives or a
church group or, you know, I'm hearing all kind of things. So
if you have ideas on that, I'd love to hear anything from
anybody here. And I do have one board opening, in case
somebody's interested in helping me with that.
But any ideas that you have in--you know, maybe with Robert
too, is how can we approach a senior citizen who is caring for
a loved one, to let you know that we're not there to take over
your independence, we're there to help promote your
independence.
Mr. Lundblade. Well, I don't know if I can answer that, but
I can see--and I'm not as familiar with your group because
listening here, you've got new things going. But I am familiar
with some of the old tactics that were put up when we were
younger and I don't want to subject me or my family to that
kind of behavior. And if you can give us some guidance along
the way and some help and give us a little relief as to some of
the pressure that you get under--I feel badly because I break
down up here, but it's just the pressure. But we need a place
like you have. And honestly, the minister of our church is the
one that sent me over to see you. And I just wanted somebody I
could leave Marion with while I could get away for a few days.
I've tried to get help.
I had a young lady come out and help me and she worked for
me a few months and we got along real well, and I had the
physical therapist come out. We felt with her that we could get
the Medicare thing, people sent out the physical therapist.
Done a wonderful job and showed it. But then that only can last
so long and then somebody has to take time to be with her when
they do that. And I'll be damned if the hospital found out she
was out like that and then bam, you can't keep them. They're
gone. And I'm sure that your agency might get somebody trained
to find out and bang, they're gone, because there's a shortage
of nurses here and there's a shortage of health people here and
it's dynamite. I'm sorry, but.
Ms. Melgaard. That's true. That's always an issue.
Mr. Lundblade. And the gal, then she went to work--as a
matter of fact, she said she needed to get some money to fix
her car so she could go get a job. So I let her have some money
to go get the car. Then she called back and said she would come
and work it out. Fine. Then the day she was supposed to come
out, she said that she had to take care of her grandmother.
This is fine. I haven't seen the money or anything else since,
you know, trying to work it out, but the point of it is if you
get--it's difficult to find somebody that can do it.
I'm sorry, but as Mr. Steele says, we're independent people
and we're living in an entirely different valley. I live out of
here, on a ranch. I can look out and I can see everything. I
don't have any neighbors around me. And to get tied down to
what this--Seventeenth Street traffic and that, you know, it's
a little nervous. I used to go down there in a horse and buggy,
you know. And that shows you how far back.
And I'm sorry for taking the time but you're working with
one class of people here and then you're working with another.
And the baby boomers are coming on and I kind of have to smile
about it. My daughter just graduated a couple of her children
out of the university, you know. Right in the bloom of life and
bing, they got a couple teetering old folks to slow her down.
This group of people, as Mr. Steele said, we're a different
breed. And it's with the influx that's in here now, I kind of
liked what I heard yesterday. I asked questions yesterday. I
asked questions to Margo and what's all involved in this thing.
And man, she about blew my mind away, how much they do do. And
I just got mixed up in respite because I needed a place to go.
I'd like to get away. And frankly, I had an awful lot of
pleasure out of helping kids in the rest home and helping put a
smile on people's face.
I get a big pleasure. If somebody I noticed lost a loved
one, I put a clown suit on and give them a hug. You'd be
surprised how many have told me I need it so much. But I can do
that without coming on to them. It's just a clown, just a
clown, they say. You know, but you see people's eyes in a
different light when you got that clown face on. I'm sorry, but
that's just the way it is. People are hurting for a friend and
they're hurting for some kindness. And we're older and boy, you
better keep up with somebody or they'll run you off the road.
I'm sorry I'm taking your time.
Ms. Wissel. No, no, it's quite alright.
Mr. Lundblade. It's a real problem you got and if you can
help keep people there and help them out--because I had no idea
that it was so damn rigorous of a job to take care of
everything, the nursing. I don't have to do any nursing but the
housekeeping and keeping the things clean and everything like
that. You're not used to it. I'm glad you're with us. I'm glad.
I'm sorry I can't help you much.
Ms. Wissel. Russ.
Mr. Spain. I think one of the things that Commissioner
Steele hit right on the head when he mentioned that we are
dealing with an independent group of folks, and we're not well
known and Wendy alluded to that as well. But what he is doing
as a county commissioner, being involved in District Seven
Health, he is also on our umbrella agency, Eastern Idaho
Special Services Agency Board of Directors. That involvement
and learning what agencies are and what agencies do will go a
long way toward getting our message out, if you will. And what
the Senator is doing as Chair of the Senate Special Aging
Committee. All of that will help.
Ms. Wissel. Any other questions?
Mr. Park. I'm Darren Park from the Social Security
Administration, and I kind of had a comment and then a
question. We get a lot of calls on a daily basis from this aged
population that want to know where to go, where to turn next
to. And so any information that we could be given as a Federal
agency to know where to refer these people to and any training
that could be provided by State organizations or whatever that
could come in and give that information to our employees can be
greatly helped. And this would be, throughout our State and
throughout the country. I'm sure they appreciate any
information we could get.
And then my second question, I guess, we've talked a lot
today right now, how to help these people right now. And Mr.
Lundblade really brought up this subject several times, the
baby boomers. As the Social Security Administration, we're
scared to death what's going to happen.
Mr. Lundblade. It's coming.
Mr. Steele. It is. What I want to know is, what's Congress
looking at into the future, because it's not much further down
the road. These people start to retire in 6 to 7 years. And
what we're looking at down the future because this whole aging
agency is going to get a lot more important to the community,
if it's not now. And it is now.
Ms. Wissel. Darren, that is something that is currently
being discussed. We will be discussing it here in just a few
minutes. We will talk about Social Security and Medicare. The
two need to be modernized. There is also the prescription drug
programs issue that is also being discussed.
We're talking about services and we're talking about a
population that does not, ask for anything. They do for
themselves. They're very independent. They take care of
themselves. They don't ask anyone for any help. In just a few
years you get the other spectrum, which is the french fry,
drive-through generation. The generation that wants it now,
wants it fast and feels entitled to it. And so it's two totally
different populations needs that we need to address and plan
for. So yeah, you're right. It's going to change everything and
the way we do things.
Mr. Park. Thank you.
Ms. Wissel. We will be talking about all those issues in
just a couple of minutes. We will talk about to what is
happening with all other services. Thank you.
Mr. Wilkes. Lupe, may I just respond quickly to one of his
comments?
Ms. Wissel. Certainly.
Mr. Wilkes. We have a State conference on aging scheduled
in September I think would be helpful to provide information to
the Social Security office staff around the State. So I'll make
a point to get the information to your Social Security offices,
that you may be interested in attending that conference.
Mr. Park. Thank you very much.
Ms. Wissel. Any other questions or comments in regards to
Family Caregiver?
Ms. Hedges. My name is Marsha Hedges, I'm with the SCIBA
program. I think information and somehow getting this out to
those seniors--we serve a 16 county area. We get a lot of phone
calls and people have no idea where to turn to. And in Idaho
Falls and of course our area agency in Pocatello and the people
just have no idea it's out there. Unless they go to a senior
center or something like that, they're getting that
information. But not all of the people are at the senior
centers.
And I think that's one of the things that we need to
address is how to get that information into their hands. Idaho
is a very religious State and I know we don't mix government
and religion, but maybe some church bulletin board--you know,
bulletins at churches and things. Somehow we need to reach the
people and let them know that information is out there.
I'm a baby boomer, I just kind of comment here. I have
parents that are World War II veterans and the same as Robert,
we won't turn to the government for help. That we have been
taught, you know, by our parents that we will be self
sustaining. And yes, our parents live next door. My father-in-
law has congestive heart failure and as children we are
stepping in and helping them right now. I think I see that in
Idaho as you know, we take care of our families and we're
taught that way. And so I think you might see more of that in
Idaho than you do other places. But that's my comment on that,
is you know, we are preparing and we are ready and getting
things in place to take care of our parents. So thank you.
Ms. Wissel. Thank you. Any other questions? Then what we'll
do is we'll conclude the forum and we'll go right into
discussing the Senate Special Committee on Aging, the agenda
that Senator Craig has set, what's going on in regards to aging
programs and give you the opportunity to just ask any questions
that you may have in regards to what's going on in Washington
when it comes to services and programs for the aging
population.
[Whereupon at 11:30 a.m., the forum was concluded.]