[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

                              ----------                              
                                                                   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

                              ----------                              


                         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.]

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