U.S. GOVERNMENT PRINTING OFFICE

74–366 PS WASHINGTON : 2001

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

(

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

CONRAD BURNS, Montana

RICHARD SHELBY, Alabama

RICK SANTORUM, Pennsylvania

SUSAN COLLINS, Maine

MIKE ENZI, Wyoming

TIM HUTCHINSON, Arkansas

PETER G. FITZGERALD, Illinois

JOHN ENSIGN, Nevada

JOHN B. BREAUX, Louisiana

HARRY REID, Nevada

HERB KOHL, Wisconsin

RUSSELL D. FEINGOLD, Wisconsin

RON WYDEN, Oregon

EVAN BAYH, Indiana

BLANCHE L. LINCOLN, Arkansas

THOMAS R. CARPER, Delaware

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)

(1)

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

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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

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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

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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.

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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

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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?

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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.

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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.

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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.]

(19)

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

20

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

21

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 servVerDate 11-MAY-2000 13:49 Sep 07, 2001 Jkt 000000 PO 00000 Frm 00025 Fmt 6601 Sfmt 6601 C:\DOCS\74366.TXT saging1 PsN: saging1
22

ices, 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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24

25

26

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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 conVerDate 11-MAY-2000 13:49 Sep 07, 2001 Jkt 000000 PO 00000 Frm 00031 Fmt 6601 Sfmt 6601 C:\DOCS\74366.TXT saging1 PsN: saging1
28

ference 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

29

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 twentyfive 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.

34

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.

35

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

36

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

37

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 longterm 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?

38

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 longterm 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?

39

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-inlaw 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?

40

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.]

(41)

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.

42

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

43

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

44

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

45

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.

46

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 followup 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.

47

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 apVerDate 11-MAY-2000 13:49 Sep 07, 2001 Jkt 000000 PO 00000 Frm 00051 Fmt 6601 Sfmt 6601 C:\DOCS\74366.TXT saging1 PsN: saging1
48

plications 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,

49

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

50

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

51

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 al- most $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 inVerDate 11-MAY-2000 13:49 Sep 07, 2001 Jkt 000000 PO 00000 Frm 00055 Fmt 6601 Sfmt 6601 C:\DOCS\74366.TXT saging1 PsN: saging1
52

crease 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

53

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.

54

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

55

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

56

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 oneon-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

57

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?

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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 LongVerDate 11-MAY-2000 13:49 Sep 07, 2001 Jkt 000000 PO 00000 Frm 00062 Fmt 6601 Sfmt 6601 C:\DOCS\74366.TXT saging1 PsN: saging1
59

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.

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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 costsharing 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

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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.]

(63)

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.

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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

65

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

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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

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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, beVerDate 11-MAY-2000 13:49 Sep 07, 2001 Jkt 000000 PO 00000 Frm 00071 Fmt 6601 Sfmt 6601 C:\DOCS\74366.TXT saging1 PsN: saging1
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cause 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,

69

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

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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

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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.

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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

73

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

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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 indiVerDate 11-MAY-2000 13:49 Sep 07, 2001 Jkt 000000 PO 00000 Frm 00078 Fmt 6601 Sfmt 6601 C:\DOCS\74366.TXT saging1 PsN: saging1
75

vidual 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.

76

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

77

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

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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.

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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.

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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 churchVerDate 11-MAY-2000 13:49 Sep 07, 2001 Jkt 000000 PO 00000 Frm 00084 Fmt 6601 Sfmt 6601 C:\DOCS\74366.TXT saging1 PsN: saging1
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es 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.]

Æ