THE CASH AND COUNSELING QUALITATIVE STUDY: STORIES FROM THE INDEPENDENTCHOICES

PROGRAM IN ARKANSAS

By J. Kevin Eckert, Ph.D.

Patricia M. San Antonio, Ph.D. Karen B. Siegel, MSW

Department of Sociology/Anthropology

University of Maryland Baltimore County 1000 Hilltop Circle

Baltimore, MD 21250

Supported by US Department of Health and Human Services,

Office of the Assistant Secretary for Planning and Evaluation

Submitted to Kevin J. Mahoney, Ph.D. , Project Director

Lori Simon-Rusinowitz, Ph.D., Deputy Project Director Cash & Counseling Demonstration and Evaluation

National Program Office University of Maryland Center on Aging

Table of Contents Executive Summary…………………………………………………………… 1 Introduction…………………………………………………………………… 3 Methodology

Purpose…………………………………………………………………………….4 Design.…………………………………………………………………………….4Sample……………………………………………………………………………..5 Data Collection/Interviews.……………………………………………………….6 Analysis…………………………………………………………………………....6 How We Wrote the Stories………………………………………………………..7

Consumer Stories

Consumer Story 1: Louise Gardner, 68 year old, white female, urban, non-family PCW, no representative…………………………………………………………..9 Consumer Story 2: Selma Dixon, 54 year old, white female, rural, family PCW, no representative…………………………………………………………………20 Consumer Story 3: Jessie Green, 85 year old, African-American male, urban, family PCW, representative……………………………………………………...25 Consumer Story 4: Len Small, 63 year old, African-American male, urban, non-family PCW, no representative…………………………………………………..29 Consumer Story 5: Linda Doyle, 35 year old, white female, rural, non-family PCW, no representative………………………………………………………….33 Consumer Story 6: Karl Leon, 76 year old, African-American male, urban, non-family PCW, no representative…………………………………………………..37 Consumer Story 7: Pearl Rose, 87 year old, white female, urban, family PCW, no representative…………………………………………………………………….42 Consumer Story 8:Lionel Billings, 53 year old, African-American male, family PCW, no representative………………………………………………………….49 Consumer Story 9:Ida May, 80 year old, African-American female, urban, family PCW, no representative………………………………………………………….52

Consumer Story 10: Gwen Fuller, 69 year old, African-American female, rural, family PCW, no representative…………………………………………………..55 Consumer Story 11: Caroline Miller, 89 year old, African-American female, rural, non-family PCW, no representative……………………………………………...67 Consumer Story 12: Ann Bartlett, 81 year old, white female, rural, family PCW, no representative…………………………………………………………………71 Consumer Story 13: Ada Gray, 85 year old, African-American female, urban, family PCW, no representative…………………………………………………..79 Consumer Story 14: Harriett Simpson, 77 year old, African-American female, urban, family PCW, no representative…………………………………………...82 Consumer Story 15: Beatrice Wright, 56 year old, African-American female, rural, non-family PCW, no representative……………………………………….86 Consumer Story 16: Darryl Smith, 35 year old, African-American male, urban, non-family PCW, representative…………………………………………………90 Consumer Story 17: Donald Gould, 76 year old, white male, rural, non-family PCW, representative……………………………………………………………..93 Consumer Story 18: Myra Turner, 45 year old, white female, urban, family PCW, no representative………………………………………………………………..103 Consumer Story 19: Debbie Mason, 24 year old, white female, rural, family PCW, representative……………………………………………………………115 Consumer Story 20: Joe Thompson, 48 year old, white male, rural, family PCW, no representative………………………………………………………………..120 Consumer Story 21: Jim O’Brian, 23 year old, African-American male, urban, family PCW, representative…………………………………………………….129 Consumer Story 22: Dillon Long, 21 year old, white male, rural, family PCW, representative…………………………………………………………………...134 Consumer Story 23: Germaine Hinton, 69 year old, white female, urban, family PCW, no representative………………………………………………………...140 Consumer Story 24: Alvin Crane, 83 year old African-American male, urban, family PCW, representative…………………………………………………….145

Consumer Story 25: Cynthia Williams, 85 year old African-American female, urban, family PCW, representative……………………………………………151 Consumer Story 26: Winifred Fine, 75 year old, African-American female, urban, family PCW, no representative…………………………………………159 Consumer Story 27: Daniel Gentry, 20 year old, white male, urban, family PCW, representative…………………………………………………………………...163

Discussion of Cross Cutting Topics and Themes

The Family Context of Care……………………………………………………………175

Family Helps Anyway……………………………………………………… …175

Family Pitches In……………………………………………………………….176

Importance of the Family Relationship…………………………………………177

Helping Family………………………………………………………………....178

Close Relationships……………………………………………………………..179

Meaning of Independence………………………………………………………………180

Right to be an Employer and Make Decisions………………………………… 182

Community Context of Care……………………………………………………………183

The Value of the Independent Choices Program……………………………………….184

Not Getting Paid for All the Work Done……………………………………….185

Skills and Qualities Needed for a Caregiver……………………………………187

Value of Independent Choices Personal Care Services………………………...189

Alternate Uses of the Cash Benefit……………………………………………..192

Experiences with Agency Workers……………………………………………………..194

The Independent Choices Counselor………………………………………….………..196

Counselors Use Discretion……………………………………………………...198

The Quality of the Counselor/Consumer Relationship…………………………198

Problems with the Independent Choices Program…………………………….………..199

Appendix A Description of the Cash and Counseling Program

Cash and Counseling: Demonstration and Evaluation of a Consumer-Directed Model for Long-Term Services……………………………………202

Appendix B Case Selection Criteria…………………………………………………………205 Appendix C Interview Protocols…………………………………………………………….206

Consumer-Representative Protocol……………………………………206 Family Care Worker Protocol………………………………………… 214 Non-family Care Worker Protocol………………………… …………220 Counselor Protocol……………………………………………………..226

Appendix D Preliminary Discussion for the Arkansas UMBC Study……………………….231

Executive Summary

The following report presents twenty-seven case stories about the experience of

adults with disabilities who receive the cash option in the IndependentChoices Program

in Arkansas. The report focuses on how “care units,” composed of consumers and/or

representatives, paid workers, and counselors interacted around issues of consumer

directed care. The study addresses several broad research questions: (1) has

IndependentChoices made a difference in the lives of consumers, representatives, and

workers, and if so, how; (2) how does participation in IndependentChoices compare with

previous arrangements; (3) how are services provided; and (4) how does the program

work? Two University of Maryland Baltimore County (UMBC) researchers conducted a

total of fifty-nine interviews on three separate trips to Arkansas from the period of March

through June 2000. After consultation with the Cash and Counseling Demonstration and

Evaluation (CCDE) management team, twenty-seven care units were selected. All the

consumers interviewed had been enrolled in Arkansas IndependentChoices for at least

eight months at the time of the interview and received at least two hundred dollars per

month in the cash option. Care unit members were interviewed in face-to-face, hour long

interviews which were tape-recorded for later transcription. Interviews were analyzed

with the help of a qualitative data management and analysis software package,

NUD*IST4. The stories in the report were written based on the transcripts and

incorporate the perspectives of all three members of the care unit; consumer, caregiver,

and counselor. The UMBC researchers worked together, writing and discussing the

stories. All stories were written with an eye to allowing participants to speak for

themselves. The stories were analyzed for cross-cutting topics and themes that emerged

1

2

in the interviews. Themes include the family context of care, the meaning of

independence, and the community context of care. In addition, participants spoke of

topics such as the skills and qualities needed for a caregiver and the value of

IndependentChoices to them. Important topics also included the value of

IndependentChoices personal care services, alternative uses of the cash benefit, previous

experiences with agency workers, and problems with IndependentChoices.

Introduction

The following report presents twenty-seven stories about what it is like as an adult

with a disability to participate in a program called Arkansas IndependentChoices (for a

detailed discussion of the Cash and Counseling Demonstration and Evaluation of which

Arkansas’ IndependentChoices is a part, see Appendix A). Researchers from the

University of Maryland Baltimore County (UMBC) traveled to Arkansas to interview

participants about the program and how it worked for them. In their own words we learn

what it is like to arrange and pay for your own care with or without a representative’s

help, how participants direct and pay their caregivers, and how participants negotiate the

program itself. The twenty-seven stories presented here also yield common themes and

concerns which help us understand how Arkansas IndependentChoices works and the

meaning it has for participants.

3

Methodology

Purpose

The purpose of the ethnographic/qualitative study was to provide detailed

information and stories about the experiences of participants receiving the “cash option”

in Arkansas’ IndependentChoices program. The study focused on how “care units,”

composed of consumers and/or representatives, paid workers, and counselors interacted

around issues of consumer directed care. The study addresses several broad research

questions: (1) has IndependentChoices made a difference in the lives of consumers,

representatives, and workers, and if so, how; (2) how does participation in the

IndependentChoices compare with previous arrangements; (3) in what manner are

services provided, and (4) how does the program work?

Design

Following the approach taken by Keigher and Luz (1997), the focus was on both

consumers (IndependentChoices participants and their families) and their paid workers

(both family and non-family member workers). Additionally, interviews were conducted

with counselors assigned to provide oversight for those consumers included as part of the

care unit interviews.

Qualitative data collection (involving interviews, visits to consumers homes, and

travel throughout the state) took place in Arkansas from March through June 2000. Face-

to-face, semi-structured interviews lasting about one hour each were conducted with the

members of 27 care units. The tape-recorded interviews were conducted by two trained

interviewers and took place in the consumers’ homes. Each consumer interviewed had

participated in the Arkansas IndependentChoices Program for at least eight months.

4

Consumers of different ages, races, sexes, monthly cash benefit amounts, and type of care

workers were interviewed.

Three semi-structured interview protocols (consumer/representative, paid

caregiver, and counselor) were developed through an iterative process of consultation

with the Cash and Counseling Program management team (included representatives from

the program management office, Mathematica Policy Research, IndependentChoices

Program in Arkansas, ASPE-HHS, RWJ). Interviews included open-ended questions

organized under three headings: background, services, and operations of the program. In

March of 2000, two interviewers conducted pilot interviews in Arkansas with nine care

units. Following the pilot interviews the interviewers were carefully debriefed, further

discussion occurred with the program management team, and the protocols were finalized

(Appendix A: Interview Protocols).

Kiegher, Sharon M. and Luz, Clare. (1997). A Pilot Study of Milwaukee’s Gray Market in Independent Care: Common Stakes in Homecare of the Elderly. School of Social Welfare, University of Wisconsin-Milwaukee Sample

Selection criteria for the care units (triads including consumer/representative, paid

worker, and counselor) were developed in close consultation with the Management team.

Four main selection criteria were identified: age 18-64/65+, white/African American,

type of worker (family/non-family), and representative/no representative. Other variable

taken into consideration to ensure maximum variability were rural/urban, recently

discharged from a nursing home, drop-out from the program, variations in use of the cash

benefit, disability level (determined by level of Medicaid benefit, but above $200 per

month), gender, new users (i.e., OMB’s definition of new, meaning no prior program

experience), high counselor intervention, age extremes, consumer without fiscal

5

intermediary, and one worker with two program participants. A further criterion in

selecting the sample was to include consumers from the two regions of the state, Little

Rock and Helena, covered by the two counseling/fiscal intermediary agencies.

The names of eligible consumers (i.e., had participated in the program for at least

eight months and fitting the selection criteria) to contact were derived from lists provided

by Mathematica Policy Research and Arkansas program office. Research staff then

telephoned potential subjects to enlist their participation and schedule home visits to

conduct interviews.

Data Collection/Interviews

A total of 59 interviews were conducted (27 care units composed of 27

consumers/representatives, 27 paid workers, and 5 counselors). Two interviewers, one

male Caucasian and one female Caucasian made three visits to Arkansas (including the

visit for pilot interviews) between March and June, 2000 to conduct the interviews. All

interviews with consumers and paid workers were face-to-face and conducted in the

home of the consumer. In most cases consumers and paid workers were interviewed

during the same visit. Interviews averaged about one hour and were tape-recorded.

Five counselors (3 from the Little Rock agency and 2 from the Helena agency)

were interviewed face-to-face at a later date. Counselors were interviewed separately and

asked about their activities as counselors in the IndependentChoices program generally,

and specifically, about the consumers in the study for whom they were responsible.

Analysis

Individual tape recordings were transcribed verbatim as Word documents and

then uploaded into software designed for qualitative data management and analysis

6

(NUD*IST 4). The software was used to manage the large quantity of textual data,

facilitate coding, and discover crosscutting topic/themes. Stories were written from the

interview transcripts.

How We Wrote the Stories

We wrote each of the twenty-seven stories based on related interviews with a

consumer, personal care worker, and counselor. In writing the stories, we tried to

incorporate all three perspectives on a topic or story whenever possible. Each story relies

heavily on direct quotations with a limited amount of our writing to connect the narrative.

We also used the interviewers’ field notes and comments to add detail to the stories.

Occasionally, the facts or chronologies were not clear or were in conflict with the

information in other interviews within a unit. In some cases the discrepancies came

about because of a time lag between interviews, differences of viewpoint about the topic,

or a lack of knowledge on the part of a member of the unit. In cases where facts were

unclear or contradictory, we checked the interviewer’s notes and reconciled evidence

within the transcripts themselves.

Each of the author’s wrote the original story drafts for a third of the cases. We

discussed story content and interpretations as a group and read each other’s drafts and the

interview transcripts to check for completeness and accuracy.

We added topic headings to facilitate reading and comparison between stories.

Names are all pseudonyms. Places, companies, and agency names have been eliminated

or fictitious names used in their stead.

Within quotations, three periods represent a short break within an answer such as

an interviewer breaking in to ask a question. Four periods are used to indicate a

7

considerable break in the conversation. For example, sometimes a consumer returned to

a topic or expanded on an answer much later in an interview. Brackets within a quote

include our clarification of a reference to a person or event. The terms caregiver, care

worker, and care provider were used interchangeably as were consumer and participant.

Quotations were rendered as close to verbatim as possible in order to preserve the

rhythm and regional flavor of the interviewees’ speech patterns. Above all, the

participants speak for themselves about what life is like for them in the

IndependentChoices program.

8

9

Consumer Story 1

Mrs. Louise Garner is a sixty-eight year old white woman who lives on the

outskirts of Little Rock, Arkansas, in a trailer community. She lives alone and has two

personal care workers; her granddaughter, is a college student, and a young African

American high school student and neighbor. The two young women share the fourteen

hours a week of care that Mrs. Garner can afford. Mrs. Garner has a problem with

numbness in her legs as a result of several failed back surgeries. In addition, she suffers

from asthma and bronchitis. She must use a walker, cane, or wheelchair to get around.

Mrs. Garner can only stand for five or ten minutes at a time before getting severe pain

down her left leg and into her back. Since her balance is also poor, she really needs help

to do almost everything.

The Problem with Caregivers

Mrs. Garner’s main problem, which pre-dates her involvement in the

IndependentChoices Program, has been in getting and keeping personal care workers. In

fact, Mrs. Garner decided to participate in the program because of her frustration with the

difficulty in finding a care worker.

One day I'd have some one and the next day I wouldn’t and I've gone for as much as three weeks without service from the nursing agency. So I was really excited about this to be able to hire my own. I've had some difficulties because I don’t have any family members to take care of it where a lot of people do have, which that's wonderful. But I've chugged along and pretty much kept myself. I had one lady for seven months and she was real nice. Of course you know, nothing lasts forever, so I lost her. Right now my granddaughter and a little friend of hers are keeping up the hours for me, but I am looking for someone to work regular. They work regular, but they really don’t want to do it, but they’re doing right now to help me. And I do want to stay on the service, so I'm constantly looking for someone. And my problem is that people really need more hours than I can offer them for one individual, at this particular time, I’m allotted fourteen hours a week. But that averaged out not quite four days a week at $6.75 an hour. Actually I give up an hour of my time to be able to pay more for my health. There's not

9

very many people that will work in this kind of work for $6.75 an hour and for only three to three-and-a-half hours for four days a week. They need more than that, and that's where my problem is. Of course now if I had family, they could come in and help me and I could pay them, it would be much easier but its harder on people that don’t have family. Because I've called agencies and the Arkansas Employment Agency, and senior citizens agencies and all of this, and you just can't find someone to work that type of hours. If Mrs. Garner could hire a “regular” personal care worker she would probably

have them do different tasks than those done by her granddaughter and young neighbor.

If I had someone to work on my own, you know work for me, it would be preparing my food. Like I would have them, if they came in at 10:00 in the morning, I’d have them fix me breakfast, and they could fix me a sandwich or something for lunch and then I’ve been on Meals on Wheels frozen dinner for supper, I would have more variety. So that's my problem. But other than that it is wonderful, like the first seven months was heaven, I had the same person everyday, you know, like anything else sometimes they had to leave and right now I have my granddaughter filling in, she might be in at in the morning, but they always get here and straighten up, if its not but an hour and a half a day. That's where I am right now with it, but that is totally my fault, if I had family I wouldn’t have any problem. But my granddaughter's in college, so she has to balance her hours coming over here with the hours she has in college. And the other little girl that helps her, she's in school, she's a senior and…one day she gets out at 2 :00 the next day she gets out at 3:00 or 3:30 and so the hours are all jumbled up. But regardless, I get everything done, or they get everything done for me at this particular time, and it would be all right for me, but I do know they're just doing this to be good to granny. But I really like the program, I think its good, especially for people that have family that can help them, or even a friend, you know, that will come and do it. But all my friends have regular jobs and so do my children. So I don’t have anyone to come and fill this in and I sure do wish I can find someone, because I do think this is marvelous, its just wonderful, even though I've had all these problems, it's still better than what I was getting before. And I'm going to hang on, because I know there is someone out there that wants to work these hours. But if I could just pay a little bit more or even had a few more hours, you know, one or two hours longer, I believe I can have someone to work. Because that is the problem, they just can’t work for that less money for those few hours a day. Even with the scheduling inconsistencies, Mrs. Garner is very grateful for the

help her granddaughter and neighbor give her. As she commented, “Everything they do

is something I need done.”

10

Agency Caregivers are not Satisfactory

Now that Mrs. Garner has two temporary caregivers who she knows, she is very

clear about the problems with agency caregivers, they do not necessarily care about their

jobs. As Mrs. Garner remarked, “I’ve had several of them sit down and go to sleep

during the time they were here.” Also, Mrs. Garner felt that she could not tell an agency

person what needed to be done.

They’ll tell you they know what they’re supposed to do and that’s it. A lot of them talk down to you, especially the younger ones, they’re not actually mean but they’ll just talk down and I don’t like that, I like to be up to the level with anybody I’m talking with, young or old.

According to Mrs. Garner, the agencies themselves limit what a personal care

worker can do,

But anyway, a lot of the agencies allow the nurses to do only so much. That’s the first thing they tell you when they walk through the door, I can't do this and I can't do that. And I don’t know why the agencies send them, because they know what I need, you know, they been told that they'll send them. That's why I think this is better than agencies … I've been having nurses until I started on this for two years and that’s the way it was. They have problems with short hours. A person would rather go to a house and give a bath in one hour. Actually, she gets paid more for that, this is from the agency, and give a bath, than to have to go to the house and straighten up the house, clean the house, and bathe the person. So they don’t have a lot of people that want to do these three hour shifts in the home, when they straighten up the house, change your bed, maybe make you a meal, you know just run through everything. Can't go through the grocery store, can't pick your medicine up and all this. And if they, I don’t know why, but the state would even pay an agency to do those things and people that are still getting services are getting cheated. The state is paying that agency to send someone out to take care of them but they're not doing it, in my opinion. And I've heard that from every agency. Now there are some people that come from the agency that will go ahead and do things they are not supposed to do, because they are just that kind of person. But there is not very many of them because of the wages. They don’t get paid as much as people on Independent Choices can pay them. I told them when I first signed up for this that every penny that I was allotted for my health, I was wanted to pay the person that worked for me. Mrs. Garner also mentioned that agencies are not responsive to complaints,

11

And we need to be able to call the agency and say, well this person didn’t do this and didn’t do that and whatever. You know what they say when you do that? Well we’ll try to find you somebody else. Then you go three weeks without anybody. That’s the way that goes.

Money is an Issue

Mrs. Garner attributes part of her difficulty in hiring a caregiver to the amount of

money per hour she can afford to pay them. Her counselor tried to help her find a care

worker by giving her number to two or three women.

They called. I gave them directions to get here and told them how much I paid an hour and just over a little bit of what was expected to be done. Several of them didn’t even show up. Then I had one that came out and made out an application and didn’t show up again. Family is the only one that’s going to work for $6.75 an hour and I doubt seriously if you have another person in this that pays more than $6.75 an hour. Cause I’ve paid every penny that I’m allotted in order to entice someone to work for me. I wish I could pay $8 an hour. In fact, when I got this brochure to start on this, I was almost sure that it stated somewhere in there that you would be able to pay them up to $8 an hour. That was another thing that impressed me, is to be able to pay that much because I knew most agencies don’t pay that much. It would make it easier to get help. But it didn’t figure out that way for that amount of money that I was allotted, that I could pay $8 an hour. It might be for some people but not for me. Mrs. Garner must be careful because she has such a limited income to work with. “…I get food stamps and I only have $532 a month income, so I can’t buy a lot of fast food stuff, but I wish I had more money to buy fruit and stuff like that but I don’t…. Every year I get a cost of living increase from my social security and every year in October I get a cost of living increase in my food stamps. In January I get the one in my social security. Well, when I get the cost of living in my social security, they cut my food stamps anywhere from 5-6 dollars and I only get that increase they gave me for the 2 months, November and December. When I get my increase in my social security, they take it all back. So I’m still getting the same amount of food stamps that I got when I first started getting them, and that’s been almost three years, and my social security has only gone up less than $15. The increase in three years in my social security takes away from my food stamps. So I’m at the same place I was three years ago money wise. That’s not fair, the state of Arkansas is not fair to people.

Mrs. Garner’s experience with her social security and food stamps helps her

understand why it is difficult to hire a personal caregiver.

12

I’ve called the senior citizen employment agency, and you know what I hear constantly? If you have to make out a tax report, they don’t want to work. People that want to do this kind of work, don’t want to pay taxes on it. They’re retired and if they pay taxes, they’ll take their money away from them. I understand how that is, because in the state of Arkansas they’re really tough on you. Alternate Uses of the Cash Benefit

Because Mrs. Garner did not have a personal care worker for several months, she

used her cash allowance to purchase other items. Her counselor, Mr. Campbell

explained,

She asked about utilizing her allowance that month for other personal care-related expenses since her family has been helping her with her personal care and she didn’t have to pay anything. She had asked me to help until she could find a permanent employee. I assisted her with developing a new cash expenditure plan. She wanted to buy the air purifier. She used, it was $125.00, and so she used it to buy that. She has asthma, and that was a real help to her. Without this program, she probably wouldn’t have been able to buy the air purifier. She also used the money to buy a toaster oven. She had a microwave oven, but she didn’t have a toaster oven, something that would make preparing meals easier for her, so we approved that. And of course she used part of her money for her medications and personal hygiene items, etc.

Although her difficulties in finding a personal care worker frustrated her, the cash benefit

allowed Mrs. Garner to buy much needed equipment and supplies.

Service Performed by Personal Care Workers

Mrs. Garner’s two caregivers help her with just about everything.

They do all of the housework and they help me in and out of the shower, they get my clothes for me. This is when I have help, when I don’t have help I just take ‘em. I take a sponge bath. They clean my house, general house cleaning and if they’re here in the morning, they prepare breakfast, so I don’t have to eat cereal, and if they’re not, I have cereal for breakfast. Then I get the Meals on Wheels which I put into the microwave for my other food, and I buy things that I can make a sandwich.

13

Mrs. Garner’s personal care worker shops and runs errands for her and picks up

medication, tasks that an agency worker will not do, but which are very important to her.

Her personal care worker, Marie, does many types of jobs for Mrs. Garner.

I vacuum the floors, make her beds, fold her clothes, I cook breakfast for her sometimes, dust, polish the furniture, wash the dishes, mop the floors, mop the bathroom floor, sanitize the bathroom, just keep everything pretty much dusted because she is allergic to dust. I take her to the store and pick up her medicines. We go out to Wal-Mart and stay there for about three or four hours, so that is basically what I do.

The trips outside the house are especially important to Mrs. Garner.

Marie,…takes me to the grocery store more than my granddaughter does. She takes me if I want to go to Kmart, she takes me out there and helps me to get in and get on to those little riding things and that gives me a thrill because I don’t get out much. We go together. I use my walker to get in and then I get one of those buggies to go through the store. I really don’t make her follow me around. I tell her to go sit down or do something and I go on. It is fun. I went a long time before I was able to do that. In fact, just this year. For two years, I couldn’t do that because I didn’t have anyone to take me. That is what this has done for me. It is wonderful. It is….But its’ just been wonderful this last year. I’ve been out more. Before I had wheelchairs that had never been on the ground because the nurses that came out here would not take me out anywhere. I’ve gotten to go outside and walk with my walker. And I’ve got to do things this last year that I’ve never been able to do before. I went for two years without going into a Wal-Mart or a Kmart or a grocery store until now a year ago. So this has really been a lifesaver to me. To be able to hire someone, and above all have them do what I need.

Relationship with the Personal Caregiver

Mrs. Garner had a definite idea about what she looks for in a personal care

worker.

I like an outgoing person. I like someone that talks and that’s friendly, neat and clean. Looks honest. People that look you straight in the eye when they talk, I look for things like that. And their reference, always check their reference. No matter what impression you have, always check their reference. Mrs. Garner looks for a personal relationship with her caregiver. Her

granddaughter and young neighbor are trying to help her.

14

I do know I’d like to have the regular person because I do know they’re doing it just to help me. And they don’t call it a job or anything like that, they just come and help me, but I would really like to have someone more or less for a companion type older person. Now these girls are wonderful, but you know we don’t have a lot in common even my granddaughter, now they have more in common when they are over here the same time. Mrs. Garner’s personal careworker emphasized the family-like nature of their

relationship. For example, Mrs. Garner’s granddaughter often combines visiting and

working. Marie, Mrs. Garner’s second personal care worker described a typical day.

On a typical day, we sit down and have a little conversation before I just jump right into cleaning up. We just sit down and talk about things. I sit down at least about thirty minutes and then I start from the back and work my way up to the front cleaning. When I get through, we will sit down and talk some more. When my hours are up, I go home. Marie agreed with Mrs. Garner that there were sometimes problems in

communication because of the age difference.

I guess it is just like she is more of a grandmother type and sometimes we bump heads, you know, of age, but we pretty much get along. We have not had any bad words towards one another. If we feel that something is not right towards one another, she will tell me, and I will let her know. There is a discrepancy sometimes, but we just manage to you know. I like working for her because she is a nice lady. She is real sweet. I like working for her. Marie checks up on Mrs. Garner, too. “ I call her if a storm is coming and ask

her if she is alright. I see if she needs anything or wants to go to the store. I am pretty

much concerned about her.” Marie does not work for Mrs. Garner just for the money.

It’s not the money. I just like helping elder people, and I see that she really needs help. I could really be doing something else, but I choose to help her. You know, after school I could go to a mall or something, but I choose to take her to the store because I know that she really needs it. If it was my grandmother, I would do just the same, you know, so it is just what I choose to do. Even before working for Mrs. Garner, Marie helped her. “ From time to time, I

did a little work for her. It wasn’t much. It was like taking something into the kitchen

15

for her or something like that, but I didn’t really start working for her until she hired me.”

Marie enjoys the fact that her job with Mrs. Garner is so close to home. “ I live across

the street and it is kind of convenient, gas saver, I mean. It is pretty easy, so I like it.”

Sometimes the family relationship may be difficult. Mrs. Garner mentions that

her granddaughter is uncomfortable with the work relationship.

I’m paying my granddaughter because she’s in college and she needs a part time job somewhere going to college and that’s why I’m paying her. And she don’t like that at all that granny pays her, but I told her to feel free to take it, because I need the help. That’s why she’s taking it. But if I had a family member that could come and take care of me everyday or rotate it out, they wouldn’t take any money. Problems with the Schedule

One of the reasons that Mrs. Garner would like to get a permanent caregiver is

that her granddaughter and neighbor must work around their school schedules and cannot

always come when Mrs. Garner would like.

They work the schedule out between themselves because they know their school hours and all and I’m just glad when they come through the door. And I’ve eaten a lot of cereal in the last 2 or 3 months. And occasionally my granddaughter will come on the weekend and put in some hours and that way she fixes my breakfast and you know we just have a good time. At least once a week I get a good breakfast and things like that. But they kind of work out their hours. And I appreciate that because I could be here without anybody…. Because those girls get here, and they do what I need to be done. And it’s not at the hours that I would like. But you know you have to do what you can do. And I’d like to have them come in earlier in the morning. But they can’t do that, they go to school. I understand that, they have to get to me in the evening, which is fine. I don’t mind sacrificing that. I’ll just go ahead and eat cereal, I like cereal. Mrs. Garner’s personal caregiver, Marie, also feels the pressure of providing care

on a schedule. Marie mentions that the most stressful part of her job is,

Sometimes I have things to do and I know that she has things to do and I want to be committed. But sometimes with church and things--we feed the hungry on Mondays in my church--and she might want to go to Wal-Mart. So we might be

16

in disagreement, but I think that time is the biggest issue, you know. Like I said, I manage to always try to put in that time, even if I have to delay a day or say, “Well, I am not coming today. I am going to come tomorrow. I will try to take her where she needs to go. Self-Direction

Mrs. Garner was self-employed before her back problems. She is interested in

and able to direct her own care. Mr. Campbell estimates that he spends less than an hour

a month working with her. He commented that directing her own care was important to

Mrs. Garner.

She loves the program. She thinks it is wonderful. She likes being able to control her personal care and decide who works for her, when they come and work, and what they do. She really enjoys that…. She certainly knows how to advocate for herself, and she knows what her rights are. She’s a reasonably intelligent woman and unfortunately her health condition doesn’t allow her to be as independent as she would like. Mrs. Garner is very capable and she knows what she wants and she doesn’t mind making that clear. Some people doing their job trying to do their job may consider that a problem, but I didn’t. I looked at it though I was real glad because we have so few people whose health has gone bad or are disabled or are able to handle it themselves as well as she is. I have been really impressed with that. She is very, if you tell her no the first time, that doesn’t necessarily mean no to her. If you tell her that you can’t do that, she is going to push until she knows for sure that is the answer. She is very capable of advocating and making clear what it is that she wants. So that can be problematic. It can be time-consuming, but I’m glad. I would rather see that than to see the alternative, which is someone who never calls, who never complains, who never says anything about their services, and you don’t really know whether or not they are satisfied or not.

Mrs. Garner enjoys managing her own care.

Nobody has anything to say about what they do for me. If I hire them, that’s fine, they don’t have anything to say. The Agency has nothing to say about who I hire or any of that. Their hours, I send in their hours, they have them sign their time sheet and send it to the agency, and they send them their check. They get paid on the 9th and the 23rd I think. And it works out fine…. You see I’m in control. Mr. Campbell and them are not looking down my throat everyday, wanting to know what I’m doing everyday. They’re not checking on me and putting pressure on me and that’s why its independent. And that’s exactly what it is. They just make sure that if I need anything, they do it and get it done, send me whatever I need.

17

Mrs. Garner has a clear idea about how to manage the people who work for her.

They know when they come through the door what they’re gonna do first. They know the things that I like to get to first. … I just let them go you know … and I like to let whoever is helping me work out where they’d like to start. Sometimes everybody has a starting place different than where you would start to do a project. If you had a bunch of papers on your desk, you’d like to start on those papers where you think you can work from the best and that’s a good way to let your help do when they come in your house. After they find out what you’d like to be done, then let them choose a spot they’d like to start. Some people like to start with the bedroom, others the bathroom, and I’ve watched this over a period of time, and others the kitchen and maybe the living room and let them start where they want to and they come together better. But if you this that or the other. I mean even I, if I work a little bit here or over there, when I was able to work, I’d end up with hardly none of it finished. So you have to let them start, I’ve learned this, where they want to start and let it come together. And they work faster and freely when they feel in control of what they’re doing as long as they do it to please you, I’ve learned that. If they don’t have time, they know which things I like to get done even if there is something, has to be left undone-- they know which one I like to get first. That’s a good way to work with your help.

Because she can pay for care, Mrs. Garner feels that she is making a contribution

to the education of both her personal careworkers and that they are gaining valuable

experience in their work for her.

I do hope that the experience that my granddaughter and Marie get from taking care of me, they will always have that. Some day they may have to take care of their mother or mother-in-law or whatever, you know, and they will have that. I don’t want either one of them to make a living at it. I really don’t because it is hard work. Really it is. It is hard work, and it is the type of work that you don’t ever get paid very much for, but it is the type of work that is needed so bad.

Benefits of the Program

Mrs. Garner is very happy with the IndependentChoices Program. One of the

chief benefits is that she now knows how she will take care of the things that need to be

done. Before enrolling in the program, for example, a kind agency nurse helped her with

errands.

18

Well there was times I had a nurse that would do that, even though she wasn’t supposed do. She’d take my list home with her, and come by the grocery store and get my things that I needed. She’d take my card and number if I needed to use my food stamps. I would just hand it out to anybody I could get to do it. It was really bad the first two years I was on the nursing. I didn’t know if my daughters would have time to go to the grocery store. My friend across the street, when she was going to the grocery store, she’d call me and ask me if I need anything, which she still does that. And just that, the Lord took care of me, but it was hard. It made me anxious because I knew things were needing to be done, that I had to have my medicine, that I needed groceries, the laundry needed to be done. It kept me upset all the time.

19

Consumer Story 2

Mrs. Selma Dixon is a 54 year old White woman who is divorced and lives alone

. Mrs. Dixon lives in a trailer home in a remote, rural area. The trailer home is set off of

a small tree lined road. Mrs. Dixon keeps pygmy goats, pot bellied pigs, geese, ducks and

turkeys in pens in her backyard. She also has two dogs in her home. Mrs. Dixon’s niece

and nephew live in the trailer home about 100 yards from her on the same plot of land.

Mrs. Dixon suffers from a deteriorating spine that has disabled her over the past seven

years. She also has congestive heart failure and arthritis.

During the interview, Mrs. Dixon was lying in a chair and appeared to be in pain.

She remained quite still during the course of the interview, not changing her position

more than once or twice. Mrs. Dixon does not have a representative.

The Hardship of Rural Locations

Mrs. Dixon received care from a local agency prior to her enrollment in the

IndependentChoices program. She was extremely displeased with the service, but did not

feel she had any other choice.

I came in from having surgery and they cut me from the top of my stomach and all the way around and went in and moved everything and put cages in my back, and the girl that came out and was supposed to be helping me, she would come in, sit down on the couch, and drink her Coke, and go to sleep. When it came time for her to leave, she would get up, put her Coke can in the trash, and say, ‘I will see you tomorrow.’ And I am all the way back there without water or anything, so I said that something’s got to be done. I turned her in. It didn’t do any good…

Mrs. Dixon fired her help.

June [Mrs. Dixon’s daughter-in-law] was coming over and taking care of things anyway, so I said it would be better to be that way then having to pay somebody to sleep, because I don’t think the government needed to pay for that, and I hadn’t seen hide nor hair of her since.

20

Mrs. Dixon has found services difficult to obtain due to living in a rural area.

Mrs. Dixon also feels that services are hard to come by due to perceptions that her

neighborhood is unsafe.

You don’t have too many people who come out here and visit you because of the way the area is and everything, but I heard yesterday that a man got shot up the street there. The man right up the road there. The guy got shot by a full-gauge shot gun. I didn’t know it until it was on the news this morning. [A neighbor] went and called and said, there are police all up the road from you all. Do you know what happened, and I said no. This morning it was on the news and I called him and told him that I know what happened now.

Mrs. Dixon also feels that there are racial concerns in her area. “A lot of them [service

providers] don’t want to come down on a count of the Blacks, you know. I can see their

point, but she don’t come down anyways and she is supposed to be doing something.”

Getting to and from the doctor’s and other necessary appointments is also difficult

for Mrs. Dixon. Recently she has begun receiving van services that are covered by

Medicaid for the purpose of transportation to medical appointments. Mrs. Dixon finds

this service does not accommodate her needs.

Yeah, you have to call them 48 hours ahead of time, and if you have an appointment like on Monday, you have to call on Thursday and if you forget as much as I do, you forget to call, so I just have to look at somebody and if all the appointments are late like this one today. She would have went, but then she would have had to took her kids out of school early, and there ain’t no sense in having to do that. So, the Medicaid van told me that they couldn’t come out this far; I was too far out.

The Need for Extended Family

Mrs. Dixon has raised 27 children including nieces, nephews, grandchildren and

foster children. She maintains a relationship with all of her foster children and is a great

grandmother many times over. June, Mrs. Dixon’s daughter-in-law, started taking care

of her when a previous care worker was not providing adequate care. June was already

21

assuming the care for her mother-in-law when Mrs. Dixon told her about the new

IndependentChoices program. June says, “She found out about the program and asked

me did I want to get paid for doing it because she doesn’t have the money to pay me. I

help her all of the time, so people from the place came and interviewed us, and I got

hired.” June’s wage went up three months prior from $5.50 to $5.75 an hour. Mrs. Dixon

says, “She gets paid 42 hours every two weeks. If she got paid for all of them, (the work

hours she puts in) it would be a miracle.”

Mrs. Dixon and June have “a great relationship,” which gives Mrs. Dixon a lot of

confidence in the care that she is now being provided under the IndependentChoices

program.

Yes, she has had a pretty rough life herself, but she is more of a daughter to me than anybody I have had around out of all of the kids that I have raised. She is there. She takes care of me, and she won’t let nothing happen to me if she can help it. She does anything I ask her to, so sometimes it just hard to ask. She goes and does things that I don’t even ask her to because she knows I can’t do it. I guess I just love her to death. She is part of my family.

June agrees,

We have a great relationship. She knows everything about me, and I know everything about her. We talked and we have never had an argument. I mean when me and him first went out together, you know, we had a few problems then, but all that is worked out and we haven’t had an argument or fight for a long time, for years. She loves me to death, and I love her to death.”

When June needs to be away, June’s mother will come in to help Mrs. Dixon.

Sometimes June’s cousin lends a hand as well.

June and Mrs. Dixon’s son live fairly close by to her. Her son checks on her

every day to make sure that everything is locked up before she goes to bed. Their two

children also check on her regularly. Mrs. Dixon’s cousin down the road helps her with

22

payments to her land. Her nephew’s children come help out with the yard work when

they can.

The Job of Caregiving

Mrs. Dixon had a serious accident prior to her involvement with the

IndependentChoices program.

Well, it was raining and my goat was just giving birth to a little bitty baby. It was too soon for it to be born. It started to pour down and rain real hard and I said it would drown if I don’t get out there and I started to go down the steps and I slid from the top of the porch, and I went down to the ground and I hit…they said that I knocked my tailbone loose and cracked a bone right here in my hip and missed my spine back up where they had those cages, but I didn’t do it on purpose. I guarantee you that. I had been to four doctors since then and they are sending me to a spine specialist today.

June had to learn how to take care of her wounds. Otherwise, June has received no

special training for her job.

Mrs. Dixon needs a lot of assistance with her daily tasks. Sometimes I have the chance for her to help me get in and out of the tub because I can’t get this leg over in the tub and then she has to help me get my clothes on sometimes and brush my hair. And she does the vacuuming, sweeping, and mopping, and does my wash and stuff like that. It gets kind of embarrassing, though, when you go to the bathroom and you can’t get up without help, but at least I know that she is with me, you know. I don’t have to worry about a stranger coming in here and bothering me. I don’t know; just general everything that I have to do what I can’t get up and do, you know, she does it. I guess I depend on her too much; I don’t know. I hope not. I hope she don’t run off and leave me.

June also grocery shops for Mrs. Dixon, prepares her meals and feeds her

animals. June says she knows Mrs. Dixon so well that she pretty much knows what

needs to be done. Otherwise, Mrs. Dixon will instruct her if anything extra is needed.

23

Trusting in the IndependentChoices Program

Prior to participating in the IndependentChoices program, Mrs. Dixon had to

borrow money from family that she knew that she would never be able to pay back. She

feels hurt by that memory. She usually went without some of her medications or

neglected personal care items like shampoo. Mrs. Dixon had only seen one counselor

once since she began in the program. She receives monthly calls from one of several

counselors who check in on her. She is unsure who is in charge of her case. The

counselors help her to manage her bills and make sure that she has money to cover her

prescriptions. They have also taught her how to pay off her debts. Mrs. Dixon receives a

check from Medicaid the first of the month, and says that whatever money is left over

gets spent on personal care items. Mrs. Dixon feels very happy with the services that are

provided by the IndependentChoices program.

I kind of trust them with everything. I can give them all of my bank numbers and everything. I don’t trust too many people that much, but they have all been there….I wouldn’t want to lose this [program] because I don’t have a stranger taking care of me. I know that June will be there when I need her. I wouldn’t trade [June] for a brass monkey or a gold ring. Since receiving services from the IndependentChoices program, “it’s a whole lot

better. I relax more, and I got more faith in things being taken care of and everything.”

24

Consumer Story 3

Mr. Jessie Green is an 85 year old African-American male, who has been married

for 59 years. He lives with his wife Tammy in a trailer home in rural Arkansas. Their

home is very well organized, set up for making caring for Mr. Green as efficient as

possible. Mr. Green’s wife is his representative. Due to his disability, Mr. Green was

unable to participate in the interview. His son Jarod is his personal care worker. Jarod

lives with his wife in the trailer home next door. Mr. Green has been disabled for 55

years, when their youngest daughter was only 5 months of age.

Lifelong Caregiving

Mr. Green suffered permanent brain damage as a result of seizures which have

rendered him incapable of caring for himself. He also suffers from arthritis and is

confined to a wheelchair. His condition is deteriorating with age. Mr. Green’s wife was

a full time nurse’s aide until her recent retirement. The family has always taken on the

responsibility of caring for Mr. Green along with their other jobs and responsibilities.

According to Mrs.Green, “I had to treat him as one of the children, just like I had another

child. That’s how it’s been for my children who grew up and what not. They took over

some of the care for me.”

The Greens moved to Arkansas fifteen years ago from New Jersey to live next to

their son so that he could assist his mother with the care of his father. While Mrs. Green

has had previous professional training, Jarod says that he has had “on the job training,”

working so closely with his father,

…Dad, being in the position that he’s in and pretty much all of our adult life, at least for the last 25 to 30 years we’ve worked hands on with him. He’s slowly deteriorating so we have to step up and support him like we would do a child. His bathing and medication and cooking his food and washing his clothes…

25

Mrs. Green and Jarod both share the daily tasks. In a typical day, Jarod comes in

at 7:00 in the morning until 9:00 a.m. getting him ready for the day.

Well I have a routine that I do. The first thing I do when I come in and I check him out and speak with him of course …I give him a sponge bath, I wash his torso, his underarm, his trunk and his torso on down. With that same water I go to his feet up to the thigh part. I clean him up and I put his socks on and his deodorant and his after shave. We have another fresh pail of water where I do the groin area with. I never use the same water. So I got to run three buckets of water. And it works out pretty good. We have a routine, put him in the wheelchair, bring him out, feed him. During the winter months we give him hot cereal so I’ll cook the cereal for him and what not. Today we had cornflakes and bananas and juice which he didn’t drink…I said all right Pop, I’ll get you later, have a lot of fun with him. Like I said he’s going downhill but that’s basically what we do with his routine, a good hour and a half, or two hours at a time. But I’ve learned to do it so I could do it quicker… Mr. Green spends his weekdays at an adult day care center. In the evening Mrs.

Green gives him his meals and his medications. “Well you know that I have to feed him

because of the arthritis he has in his hands he can’t feed himself. Of course we have to

bathe and dress him just like a child and keep him continent of his bladder and what not.

So we have to diaper him.”

Communication with Mr. Green is limited as he is not always aware of his

surroundings. He can respond for small periods of time, but he isn’t always able to say

how he is feeling, so the family must watch him very attentively. Jarod says,

You have to get his attention and talk to him and ask him how he’s doing. Sometimes he’ll be in New Jersey so I’ll just bring him back around by just talking to him you know, and get his attention. He can respond to certain things, ask him how he’s feeling. He never complains about pain anyway, so we really have to watch him.

26

The Power of the Family

The relationship between family members hasn’t changed over the time that Mrs.

Green and Jarod have been caring for Mr. Green. Jarod says that there are no conflicts

between himself and his father because “…he wouldn’t even know if I was mad or angry

at him anyway, so why bother?” It was always this way, as long as Jarod can remember.

Mrs. Green describes her son Jarod as protective of his father. Jarod comments,

I had to do what moms and dads do. I remember my mom always being my dad also. He was always the father figure, but she was actually mother and dad for us. The care that she was giving him through the years just rubbed off on my sister and I. The program does not pay for all the hours that Jarod and Mrs. Green provide to

attend to Mr. Green’s many needs. Jarod gets paid for approximately 11 hours weekly,

although he works 4 to 5 hours daily. Yet, in spite of this, Mrs. Green and Jarod are

happy about the program. Mrs. Green remarks,

…there was a time I had to give him a bath myself and then go out and do my other job. But I’m very grateful for the help I’m getting now plus we know who’s taking care of him. We don’t have to worry about someone getting here on time for me to get out. And we know the care he’s getting…As a matter of fact we took him to the doctor, the doctor was well pleased, because he said we are actually keeping him living. I don’t feel that way though, [as if we’re] just keeping him living, after all he’s my husband and a father… Since the IndependentChoices program, Jarod finds that he spends more time

helping his mother out with his father. Jarod is interested in becoming certified as a care

worker under the IndependentChoices program due to his extensive experience with his

father. Jarod says that he enjoys helping people. He is currently employed full time.

Prior to enrollment in the IndependentChoices program, there were times when

nurses came to visit from the local Health Department. Jarod describes how he and his

27

mother ended up instructing the nurses on handling his father rather than vice

versa,“because they [Jarod and his mother] know what dad wanted done.” Mr. Green’s

son likes to work for his father “…to be certain that he’s getting the care he deserves.”

Mr. Green’s son jokes with his mother about being his boss (as she is Mr. Green’s

representative). “We have a lot of fun doing that cause we know what’s happening, we

know the care he’s getting.” It also helps Mrs. Green to get more free time. At the time

of the interview, Jarod was giving his mother a gift of time to visit with his sister in New

Jersey.

Enrollment in the IndependentChoices Program

Their IndependentChoices counselor Janice reports that the Green family “…had

a very smooth entry into the program….They have a very simple cash expenditure plan.

They use about $240.00 per month out of $280.00 to pay for their personal care

worker; about $30.00 went to taxes and then he would get $10.00 to $15.00 per month for

personal hygiene items.” Janice adds, “[Mr. Green has been] very low maintenance due

to the fact that there is a very involved and supportive family.”

Jarod recalls the day a woman came and told his mother that a family member

could be paid to provide the needed services through the IndependentChoices program.

I don’t know how to word it, but she inspired my mom to take me on, to become my employer and she said we’ll find someone, and certainly she found myself. And both of us are benefiting from this program and I think that this is a very good program. And I’m just glad that they’re allowing me to become my dad’s personal care worker.

Consumer Story 4

28

Mr. Len Small is a 63 year old single African American male who resides alone

in an urban housing complex. He became wheelchair bound three years ago after an

accident that broke his back. His apartment is equipped for wheelchair accessibility and

is well looked after. Mr. Small appeared apprehensive during the interview, moving

about in his wheelchair, and he was not particularly communicative. By the end of the

interview, he began to show signs of warming towards the interviewer.

The Importance of a Good Personal Care Worker

Mr. Small has to depend on non-family care workers. Initially he had some

problems with his care workers. Nancy has been his care worker since August of 1999.

Mr. Small hired Nancy after discovering that she was helping out with her own mother,

with whom he is good friends and who lives in the same complex. He is particular about

his apartment and has shown Nancy exactly how he wants it cleaned. Nancy works 10

hours a week for Mr. Small, putting in 2 hours a day, Mondays through Fridays. He

would like more hours, but knows that he does not have the money to pay her for more

time.

Nancy enjoys working for Mr. Small because he is very self-sufficient, therefore

she finds her tasks easy to accomplish. She feels overwhelmed with the seemingly never

ending responsibilities of caring for her mother who is also enrolled in the

IndependentChoices program on a recommendation by Mr. Small. Nancy has two very

different experiences as a personal care worker in this program. She feels underpaid for

the care that she provides for her mother and well paid in her work for Mr. Small.

With him, I get paid great. He is very sufficient. He rearranges the whole living room himself, so with him, he can do things himself, but it is easier when I am here to help him, and it helps him a lot, but with my mom, I am very underpaid ...I mean because she can’t get out of bed. So with her, she will call me and say,

29

‘Nancy, I need this. Nancy, I need that’, and it is like no matter what I do….I walk in the door and she calls me. So with her, I am underpaid, but the majority, once she is able to get up again, it will be fine; it will be perfect. During the course of the interview, Nancy stated that she has developed a

personal friendship with Mr. Small. The counselors do not object if the professional

relationships become personal, “…that’s perfectly alright because we are not the

employer…we have no control over what type of relationship they have.”

Nancy generally lives with her mother, but sometimes stays with Mr. Small. In a

typical day, Nancy gets up at 10:00 a.m., gives her mother her antibiotics, changes her

position in bed, makes certain that she has her bowel movements, and that she is kept

clean and dry. Nancy attends to any other needs and spends three to four hours visiting

with her mother. She then comes over to Mr. Small’s and “…does anything that he

needs. Sometimes I help him get in his chair if he can’t get in, cook for him, I mean

everything, really. Like I help him take a shower sometimes, I don’t know, the normal

things.” Nancy returns to her mother at 8:00 p.m. and repeats her morning ritual.

Nancy does her grocery shopping for Mr. Small once a week, then they both go

once a week to shop for her mother. Nancy likes the flexibility she has in going back and

forth between the participants. She intends on going out of town for her sister’s wedding

and Mr. Small has volunteered to make sure that Nancy’s mother is fed and that the

scheduled agency nurses come out and take care of her medical needs. Since working as

a personal care worker, Nancy has decided to enroll in a program to become a nursing

assistant. She has indicated to the counselors that she might even study to become a

phlebotomist.

30

The Counselor’s Role in Start Up

According to Mr. Small’s IndependentChoices counselor, initially there were a lot

of questions regarding the program’s guidelines and the use of the money. Mr. Small

was calling every other day within the first three months to ask if he was using the money

correctly. Most of his money goes to the personal care worker, but about $100 a month

goes towards personal hygiene items, medications and gas to provide transportation (he

buys the gas for someone else to transport him places). Nancy tends to handle

communications with the IndependentChoices counselor because she states that she is

more articulate than Mr. Small. She also speaks on behalf of her mother, therefore, the

counselor has more communication with Nancy than the consumers in this instance.

There had been some expressed concerns about Mr. Small having an unkempt

physical appearance, and that he sometimes smells of alcohol. These concerns had

required that the counselor provide extra monitoring and home training. Now that Nancy

is well established as his care worker, Mr. Small is considered a low maintenance

consumer. The counselor feels reassured that Mr. Small’s disheveled appearance is not a

result of abuse or neglect.

The Importance of Choice

Mr. Small says that he joined the IndependentChoices program “…because I

wanted really more opinion over my own house. You know, any man ought to have

authorities over his own.” He also likes the idea of being able to hire his own care

worker. “It just makes it a whole lot better…it makes it different…. You say what you

want and what you don’t want.”

31

Mr. Small puts great importance on maintaining a clean household. He insists on

remaining in charge of his life and that includes how his house is run. “I think it is the

greatest thing for people to have that much choice about their own house because people

know how they want to run their house.” Mr. Small adds,

I hope that all of the people could get on it [IndependentChoices], really. I wish that they would cut them other [agency] people out. That’s my hope. I hope that there finally comes a time that, you know, the government just put out enough money so that the other little old junk that is running around here could be cut out so that the people could have a right to speak what they want done. A lot of people don’t have no right speaking. So, they need a right.

32

Consumer Story 5

Mrs. Linda Doyle is a 35 year old white divorced female with a seven year old

son. She has been diagnosed with multiple sclerosis since 1996. She and her son live

with her ex-husband Steven who is also her personal care worker, in a trailer home

located in a rural area. Mrs. Doyle tends flowers and a vegetable garden that surround

her trailer. The trailer is wheelchair accessible.

Before her illness, Mrs. Doyle worked as a collection manager for a loan service.

She is also a professional jewelry maker who still creates pieces of jewelry when she is

feeling well. Mrs. Doyle appeared initially apprehensive when speaking with the

interviewers, expressing concern that her care worker was not at home. Once she was

reminded of the purpose of the visit she became increasingly talkative and friendly. She

does not have a representative.

Becoming Disabled

Mrs. Doyle was involved in a car accident in 1996. Previous to the accident, she

was experiencing a few problems with her leg; sometimes it would drag, and other times

it would tingle and feel numb. One week after the accident she began getting inexplicably

sick.

I couldn’t figure out what was going on. My bones in my legs hurt so bad that I couldn’t do anything but cry…I couldn’t stand to be touched. Anything that touched me—clothes, hands, chairs, anything—hurt, and I couldn’t see….I was the kind of person who wouldn’t take a sick day unless I was dying… It took several doctors visits before she was diagnosed with multiple sclerosis.

She also suffers from mitral valve prolapse, a chronic heart condition.

33

Mrs. Doyle has always had a strained relationship with her parents and foster

family and little has changed since becoming ill. Steven, her personal care worker,

describes the dramatic changes that took place after the onset of her illness.

As far as friends, they almost all faded away almost as quick as she got sick. She was at a high paying job in Little Rock working for a major corporation making really good money and was well liked by most everybody she worked with. She had a lot of friends at work. She wasn’t real active socially because she worked so many hours, but almost immediately, as soon as she became sick, the friends just kind of faded away. A lot of them quit calling in the first month and a half. She had gradually gone downhill as far as her social life or having friends and things like that. We have a support group that she usually goes to the first Tuesday of each month, but they don’t even have that anymore…. [Her family] call and talk to me once in a while, but it is not an ongoing thing or any type of real relationship. They call and ask me how she is doing. A brief two minute explanation of how she is and whether she is able to talk, you know. If there is any information that they shouldn’t tell her because her stress level is really high, and it could turn into an exacerbation, so they kind of speed it through me at first and I will say, “Yeah she is doing fine. Tell her whatever you need to.” The stuff that she has gone through in the last four years, other people are afraid of it and they think that it is some sort of communicable disease that you can get it just by having a friend who has it, and it is not. It is devastating. It is life threatening. If you let it get to you, it can ruin your life.

Mrs. Doyle sees a psychologist regularly to help her cope with her declining health.

A Care Worker’s Typical Day

From 6:00 in the morning to 9:30 at night, Steven attends to the multiple needs of

his ex-wife. He gets her medication, (she is on nine prescription medications, and takes

one weekly shot), helps her bathe and assists her to the restroom. He also prepares all her

meals, helps her to maintain her exercises, assists her to multiple doctors’ appointments,

and in general keeps an eye on her. When she has seizures, he stays with her all night.

Mrs. Doyle needs to be kept in a temperature controlled atmosphere to avoid

exacerbations (periods of intense symptoms). The summer heat is particularly

troublesome. Steven also keeps a log of her disease and tracks her exacerbations. He

34

tries to do all this while helping her maintain as much self-sufficiency as possible.

“When I get really bad and sick and I feel really bad, he dresses me up like a Barbie doll

and puts my makeup on and makes me feel like I am somebody again.” Steven also

enables her to get out of the house so that she is not housebound 24 hours a day.

Steven has had no prior training, except that he holds a certificate in First Aid and

mine rescue. He says he has learned on the job. Steven acknowledges that the money

does not reflect his true workload, but he is committed to being a care worker for Mrs.

Doyle “until she gets to a diminished capacity that there is no longer anything I can do

for her…or I’m gone, whichever comes first.” The thought of anyone else caring for

Mrs. Doyle scares Steven since she, “would be put backward in her progress.” He also

states that he would consider this type of work for someone else “as it has taught me

concern and compassion for other people.”

Fighting for Services

Mrs. Doyle had been fighting for over two years to obtain assistance, including

meeting the eligibility standards for Medicaid. She was initially denied government

assistance because she had had a good job, and “made too much money.” Mrs. Doyle was

raising her three children. When she lost her job because of her declining health she also

lost her health insurance. Previous to her participation in the IndependentChoices

program, she stated that she received less than satisfactory care from the local health

department.

The person that I had from the Health Department, she would show up in the morning when I was unable to even get out of the bed and come in there and say, “I have things to do today and I am going” without even helping me up. When I called the Health Department (to complain) they would say, “Well, we could put her on somebody else, but it will be about six months before we can get anybody else out there.

35

For the last 4 and 1/2 years, Steven has been caring for Mrs. Doyle about 18 hours

per day, 7 days a week. After a lengthy fight for outside services, including calls to the

Governor’s and Senators’ offices, and a divorce, Mrs. Doyle called her ex-husband and

asked him to be her personal care worker under the newly formed IndependentChoices

program in the spring of 1999. Steven accepted her offer. With the IndependentChoices

program, Steven gets paid for 14 hours a week. Jerry, Mrs. Doyle’s counselor recognizes

that Steven, “works far and above any allowance that has been set aside for a care giver.

He provides much more.”

Disabling the Disability

Since the initial assessment, the IndependentChoices counselor calls Mrs. Doyle

monthly. With a monthly allotment of $662, and Steven’s willingness to forgo payment

for his personal care worker hours, Mrs. Doyle has been able to purchase essential

equipment. Jerry assists Mrs. Doyle with requesting items through a local agency. She

can make monthly installments on items over $50. Mrs. Doyle also uses her cash

allowance for over the counter medications and non-covered prescriptions.

Mrs. Doyle feels that the most important benefit of the IC program has been the

change in her state of mind.

It will allow you to take control of your own life again and give you the ability to feel like… It is all about control. It gives you control over your life. It gives you control over who does and doesn’t come into your house to work for you. You can get the things that you can’t get through the Health Department like through the Health Department they can’t give me a ride to the doctors. They can’t take me to the pharmacy. If something happens and I have to go straight like today, they can’t. There are so many things that they are not allowed to do that you need done. With this program, whatever you need done, they can do for you. If they don’t do it for you, and it is a reasonable need, then you have the authority to fire them and get somebody else…[the most important benefit is] to get back in control of your life again. I am disabling my disability and enabling myself.

36

Consumer Story 6

Karl Leon is a 76 year old African-American widower living with his mother in a

residential neighborhood close to a built up urban area. His single family, two-story

house and yard are well maintained. Because of diabetes, Mr. Leon has had both of his

legs amputated and he must use a wheelchair. He receives dialysis three times a week for

renal failure. Several people were in his house during the interview, including his mother

and her care worker, a neighbor, and a boarder who lives on the second floor. One or two

neighbors dropped by during the interview. The interviewer noted that, “there was a

strong sense of community in the household, and the social interactions were warm and

positive.” The participant, however, although friendly and welcoming, was not very

talkative.

A Web of Relations

Although not a relative, Mr. Leon knew his personal care worker Barbara, long

before hiring her. Since becoming his IndependentChoices worker, they have grown

closer. Barbara says,

We have a really good thing. It is like I have been knowing him all the time. Since I started working for him, I’ve gotten closer. It is like a buddy, a buddy thing now. I just talk to him. We can talk about anything now. Even my husband comes over and talks to him. We have become good friends now…. I come in all the time now, even when I am not working. I just come here to check on him.

Mr. Leon’s first worker had to stop working for him when she married and moved

away. However, before leaving she recommended that he hire his current worker who

was acquainted with both of them. His counselor says that the transition to the new

worker went smoothly.

It went just right on. He already had her in mind and the lady left one day and his new worker started the next day. He hired his new worker before the other lady

37

left so she could say these are the things that he likes to have done. I do it like this and that. You know, you may have your own way of doing it, but this is the way that he likes it done. So it was like the caregiver trained the new caregiver as to what he required.

Mr. Leon receives 10 hours of paid assistance from Barbara. Since he is a renal

dialysis patient, he receives treatment several times per week early in the morning. To

accommodate his needs, Barbara comes each morning between 5:00 to 7:00 to prepare

his breakfast, comb his hair, help him dress, and assist him to the van. In addition, Mr.

Leon says that she (Barbara) “…keeps me clean. She keeps my bedroom clean.

Sometimes she washes the bed all up. She keeps the dishes in the kitchen clean. She

sweeps the floor. She works over here and gets the dust all off and she washes my

clothes.”

Most important to Mr. Leon, however, is that Barbara regularly fixes him a hearty

breakfast. “Breakfast is the most important. I have bacon and eggs, cereal and toast. She

gives it to me every morning.” He readily states that Barbara is much better than agency

workers are.

Well, my worker, she seems to do better than all of them that came in to work. The other ones came in, sat down; they didn’t know what they were doing. They would watch T.V. start a conversation, blah, blah, blah and all that kind of stuff…. I don’t want them to watch T.V. every time they get here. I want them to do some work. This girl I got now, she is pretty good. I am happy with her.

In addition, Barbara assists him with his medications. She says, “I help him with his shots

because he can’t see good. He takes insulin in the morning.” She learned how to

administer shots from a nurse that used to come to his home. “His nurse that used to

come here showed me the procedure to go through because he can’t see good now

because of his diabetes. So she just showed me how to do it and I just give him his shot

everyday. It is only taken once a day.”

38

The closeness of the relationship between Mr. Leon and Barbara may account for

the services she provides beyond the ten hours of paid service. When asked if she felt that

she was paid for all the care she provided, her response was

Well, I think I can get paid a little more. I am being honest because I need to call them and talk to them about that. I have to come back more because he has been sick, you know I have to come back a little more. I don’t mind doing it because I know one day I am going to get old and I am going to need help, so I am really doing it out of the care of my heart.

When asked if she had talked to the IndependentChoices counselor about this she

said that she had not had the chance. “Every time I think about it, you know, it just passes

my mind. This is not my only job. I have another one too. I’ve just been too busy.”

In spite of feeling that she is underpaid for all the help she provides for Mr. Leon

she willingly looks after him.

I worry about him because he is old and I would be thinking about him a lot. That is why I come in and check on him a lot during the day. I just come in and check. I even call, you know, when I show up and he is sick. Later on in the night I call and check on him. I always call him.

Another important aspect of Mr. Leon’s current arrangement is that Barbara has

made an effort to coordinate her schedule with that of another worker from the local

Health Department. Barbara explains,

…but you see, she doesn’t work on Saturday or Sunday, so I come in on those days. I know that she is not coming, so I come in and do whatever needs to be done…. When she don’t come, I come. That’s how I work my schedule. When she comes, I fill in so that someone is here every day. Before becoming an IndependentChoices participant, Mr. Leon also knew his

IndependentChoices counselor. His counselor Gayle elaborates.

I knew him before he was involved in the program. I know most of the people in this area. Before I came to this program, I was a classroom supervisor with a pre-school classroom for seventeen years and then I worked part-time in a grocery store. So I know a lot of people in this area. I was born and raised in this area.

39

He’s the Boss

Educating participants that they have the power to hire and fire their workers and

determine their hourly rate of pay is an important aspect of the IndependentChoices

counselors’ jobs. Gayle explains how she helped him understand his new role as the

“boss.”

He wanted me to tell him what he could pay her. I told him that this was not my decision; that’s your decision. You decide what is the amount that you want to pay her. I said, ‘I can give you a figure of the minimum and the maximum, and you decide where in between that range you want to pay her.’ Then he called and wanted me to tell her what her duties were, so I said, ‘…it’s whatever you need her to do for you. If you need her to give you a bath, if you need her to soak your feet and trim your toenails, you know, you are her boss, so you tell her.’ With this particular client, it was just getting him to understand that I am not hiring her. I am not her supervisor. Our agency is not her boss, you are. He was one of the first clients that came into the program. Getting him to understand what his role was, you know, he was her boss and not our agency. A lot of people say that you work for [our agency], but no you don’t, you work for this particular person. Gayle added that clients “…learn fast. I’m the boss. I can fire you if I want to,

jokingly, but they get the hang of it after about one month or so. They understand the

workings of the program and he did. He has done well.”

As with other clients, Gayle assisted Mr. Leon in understanding the trade off

between what you pay your worker and what remains for other things. She explains,

I let him know about the monthly allowance. If you pay your worker the maximum that you can, then you may not have anything left over. You decide if you have some needs, like money for non-covered prescriptions in an emergency, or you know, just buying personal items. You may run short on money this month or three months down the line, … or you may have to go to the doctor or just modify your house, just different things that they can do with the money left over. I just let him know that he has the option of having money left over. It depends on what you pay the worker and what your worker will agree to accept. From Mr. Leon’s perspective, the financial help he receives is important. He says,

40

Well, if I needed a little money they give it to me. I don’t get a check, it’s like whenever I need something, I give her [the counselor] a call. I will tell her that I need to pay the light bill or something like that. Or I need to go to the doctor. The benefits [of the program] are great. We have convenience. All of them seem to be doing their work nicely. It works out just fine.

41

Consumer Story 7

Mrs. Pearl Rose is an eighty-seven year old white woman who lives alone in a

single-family home in an urban area. She was wearing a nightgown and a robe and

covered with a blanket during the interview. Mrs. Rose was interviewed with her

daughter Ruth, and several other daughters in the house. Her youngest daughter, Ellen,

who lives next door, is her Independent Choices personal care worker. Mrs. Rose is very

friendly, with a good sense of humor. She had difficulty answering some of the questions

because of diminished hearing and memory so her daughter helped repeat the questions

and discussed the questions with her. Mother and daughter traded quips and teased each

other during the interview. Mrs. Rose has several serious medical problems. She is fed

through a feeding tube because she aspirates food into her lungs. She is also prone to

pneumonia and has a blocked artery in her heart, which is inoperable because of her age.

Several of her daughters live nearby and provide 24 hour a day care. Mrs. Rose is never

left alone, even at night. She has a loving extended family that see that she is cared for

although Mrs. Rose tries to maintain her independence as much as possible.

Family as Care Experts

It is immediately clear that Mrs. Rose’s family has developed extensive medical

and practical knowledge in relation to her care. Mrs. Rose’s daughter, Ellen, describes

how the family first became involved in her care,

Two years ago was when we had to start staying with her constantly because that was when she almost didn’t make it. She got a bad case of pneumonia and had a slight stroke. Then she had a Coumadin “bleed-out,” and she might have bled to death. It was in her throat, she was bleeding on the inside of here and then we had to rush her to Memphis, then she couldn’t swallow or anything so they had to put the peg tube in because they couldn’t get it down through her nostrils it was so swollen in here. When they tried to put the tube down through her nostrils, it busted a blood vein I guess and she almost bled to death. And she lost like 70 lbs.

42

So they had to put the feeding tube in. Since then we’ve always stayed with her, we can’t leave her.... They [the hospital staff] trained us in Memphis as to how to take care of the tube and how to feed her and taught us about the medication and how to give it out of the tube and things like that.

Mrs. Rose’s daughters must give her a breathing treatment four times a day to

help protect her lungs against pneumonia. They must also give her medication at night

before she goes to bed as well as feed her cans of food through her stomach peg. Mrs.

Rose must also have her blood pressure checked every morning and have her weight

checked three times a week to monitor possible fluid build-up. It is not uncommon, even

with such good care, for Mrs. Rose to go to the hospital with pneumonia or heart

problems every three to six months.

Family Support is Important

The seriousness of Mrs. Rose’s physical problems and the need for constant

monitoring require a true sense of devotion on the part of her family. Her daughters have

taken care of her for two years as they did their late father before that. As Ruth

commented, “There are four girls and three husbands and it takes all of us and a cousin.

That way we take care of it, and we know that she is taken care of.” Ruth mentions that

her daughter is an RN and that she has been helpful to the family. The sisters take turns

staying with their mother, and although there is a visiting nurse once a week and an aide

five days a week, the family handles everything on the weekends. Ellen works as the

paid family caregiver for ten hours a week through the Independent Choices Program.

Ellen actually comes to her mother’s house two or three times a day and stays for several

hours at a time. She does not get paid for all the time she works. As Ellen comments,

“They’d have to pay us around the clock in order to compensate for all that [work].”

43

The IndependentChoices counselor spends less than an hour a month working

with Mrs. Rose because of the family care that she receives,

...her daughter is right behind her, and then one of her other daughters, I believe, lives across the street or something from her. They provide a lot of care for her and a lot of family members around... And then as far as requests and things like that, I have not had a lot of requests for personal items and different things like that; mostly it is just calling them to make sure that everything is going well and usually they say yes, everything is going fine. They may call me to say, well my mom didn’t feel well today and we may have to take her to the doctor or something like that, but ... the difference is the amount of family members around this participant.

The fact that Mrs. Rose has so much family support has limited the amount of

hours given by Independent Choices. Ruth described how the counselor re-evaluates

Mrs. Rose’s needs, “We didn’t get any more time around here, because we had all of

these people around here that worked for nothing, and we got the aide four hours per

day.”

The personal careworker and other family members participate in their mother’s

care because of their deep sense of responsibility to her. Ellen said, “... we’re a very

close family and we’ve taken care of each other. If one of us needs each other then we’re

there. But we’ve taken care of Momma for a long time. She was there for us so we’re

gonna be there for her.”

Ellen has a very close relationship with Mrs. Rose who she describes as her

“cornerstone.” Mrs. Rose’s daughters do not have disagreements over her care.

According to Ellen, “Us four girls accept each other for who we are and what we are and

we get along great....We are very close when it comes to Momma. We try to keep her

comfortable and happy.” Ellen feels that, “I would rather her be here, be close, and us

44

know that she’s taken care of, than to worry about someone that might not be taking care

of her.

Problems with Previous Arrangements

The Rose family has services from several agencies including an aide five days a

week and a visiting nurse one to three days a week depending on their mother’s health.

The Rose family described two main problems with aides; 1) they were not dependable,

and 2) they do not give family-like care. The Rose family never knew if the aide was

going to show up for work. As Ruth said,

...the Health Department opens at 8:00 and the aide was supposed to be here at 8:00 and they called at 8:15 or 8:30 and said that she is not going to be here today. It was just upsetting me so bad....Before we started [on Independent Choices] we had an aide from 8:00 until 12, and we had two hours of personal care and two hours of housekeeping, but she wasn’t here half of the time, so we were having to do the personal care anyway, and the housekeeping, too.

Home health aides do not treat Mrs. Rose with the same attention and affection

that a family member would. Ruth criticized the lack of friendliness,

Just like with home health, the lady that comes and sits with her, she sits at that kitchen table and Momma sits in that chair. She is no help to Momma. She is nice, don’t get me wrong, she is nice, but she doesn’t really sit here and talk with Momma or talk about TV or things like that. She sits at that kitchen table, and I don’t think that is right. Value of the IndependentChoices Program

Flexibility in care arrangements is an important characteristic of Independent

Choices. Ruth elaborates,

See if my sister wants some time off, though, if Ellen wants some time off, then she can take that money and pay somebody to come in here whereas we were having to pay somebody to have to come in here to do it anyway if we were not going to be here out of our own pocket and now if it runs over, it is $50.00 per week, but if it runs over, like $90.00 or $100.00 per week, then we have $50.00 per week to pay somebody to do it and then just come up with the rest. That’s one of the good benefits.

45

In addition, Ruth comments about an additional benefit of the program,

...it helps us more than you guys would ever know because little things are expensive and it really helps us in that category. Even though you all are paying us two hours to take care of her, it is not really ours. It takes care of little things. It goes to buy her personal stuff. It really helps a lot because it is expensive. She really doesn’t get a whole lot per month, so it really helps us more than you will ever know.

Family Care is Personal Care

Ellen, the personal caregiver has a variety of tasks she does for her mother along

with her sisters. Ellen does not separate the personal relationship with her mother from

her relationship as personal caregiver, “I come in the afternoon most of the time. I come

every morning but not for personal care. I come in every morning to say good morning, I

love you and bye. Then in the afternoon, I come in the afternoon.”

In the afternoon, there are many tasks to be completed,

…we give her a bath about twice a week and then we bathe her the other days. So we just make sure she’s clean, she has spots on her that has to be taken care of. We have ointment and stuff on her backside. We have to watch her very close. She can’t go to the bathroom by herself she may fall. She’s very weak. We just have to pay attention to her and talk to her and love her and all that good stuff. But as far as her personal care we have to wash her hair and we just play that by ear as to how she feels. If she’s getting where she can’t stand up at the sink, we’re gonna have to go and buy her a washboard they call it. I cut her hair when she needs it. And we just take care of her….we have to pick up all of her medication. We take care of this house like it was our house. We have to do everything.

Mrs. Rose had a similar response when asked what her caregiver does for her,

I don’t get into the bathtub by myself. I am afraid of falling…. I don’t walk too good. I get shaky. I can walk, but I like to have somebody here…. I am just afraid of falling and I hate to be by myself because if I fell, I never would make nobody hear me. Mrs. Rose’s daughter Ruth prompted her to remember the things she needs help

with, “What about your glasses Momma? Do you wash your own glasses or does

46

somebody wash them for you?” Mrs. Rose responded, “Somebody washes them for me”

and then commented, “They do things that need to be done.” Mrs. Rose also makes a

distinction between the “work of the house” which is done by a non-family

caregiver/health aid, and the personal care she receives from her family. Her caregiver,

and daughter, Ellen helps her dress, move around the house, take a bath and shampoos

and cuts her hair when needed. In a humorous interchange between Ruth and her mother,

Mrs. Rose claimed to do everything for herself, getting water for herself to soak her own

feet, manicuring her own nails, and bathing her dog. When her daughter Ruth got Mrs.

Rose to admit that Ruth bathed the dog, Mrs. Rose commented, “she looks pretty clean,

too.”

Remaining Independent

Regardless of her many health problems and the extensive family care she

requires, remaining independent is very important to Mrs. Rose, “I will be honest with

you. I try to do by myself all that I can because I hate to be dependent…. I try to do as

much as I can because I don’t want to be helpless. There is not much that I can do.”

Mrs. Rose has strong ideas about what she wants to do. Her daughter Ruth

described how she had to coax her to get into a wheelchair, “I had to beg her to get in

this wheelchair so that I could wheel her around to go over there [to a daughter’s house].”

Mrs. Rose explained, “I just hate to get in that wheelchair. That makes me look old. And

I won’t be but 87 next month.” Ellen explained that Mrs. Rose, “…won’t move in with

none of us.”

This is all right because the daughters live close by. Mrs. Rose manages her

personal caregiver although she does not make a distinction between all the family

47

48

members, paid and unpaid, who help her. Mrs. Rose wants her caregivers,“… to do the

things that need to be done…. They just come in and you know, take over like it was

their house. I tell them to just act like it was their own home…. I want mine to look as

good as theirs.”