Reprinted with permission from The Journal of Mental Health and Aging, 8:3, pp 225-240, December 2001. Copyright 2002 Springer Publishing Company, Inc., New York 10012

An Exploratory Study of Personal Assistance Service Choice and Decision-Making Among Persons with Disabilities and Surrogate Representatives

Authors:

Marie R. Squillace, Ph.D.1; Kevin J. Mahoney, Ph.D.2; Dawn M. Shoop, Ph.D.3;         
Lori Simon-Rusinowitz, Ph.D.4; Sharon M. Desmond, Ph.D.5

12/11/01

For submission to:

The Journal of Mental Health and Aging

Contact Author:

Marie R. Squillace, Ph.D.
308 I Forbes Street
Annapolis, Maryland 21401
410.263.5706

Abstract

Although persons with disabilities want and expect to control their own lives, not all may be able to express those desires directly.  Surrogate representatives are key players in implementing consumer-directed programs. Data made available through the Cash and Counseling Demonstration and Evaluation (CCDE) consumer preference study in New Jersey suggest that surrogates can adequately represent consumer's views about satisfaction with personal assistance, and thus provides encouragement to continued investigation of the utility of surrogate representatives. Study results also replicate previous findings that persons with cognitive impairments and persons with severe disabilities are able to express their preferences for everyday matters. Understanding the perspective of the impaired consumer is important to encouraging consumer independence and control, to improving quality of life and to successfully implementing consumer-directed programs.

Introduction
Advances in consumer direction are perhaps the most exciting and important innovations in long term care and services of the last decade.  Characterized by offering an array of choices and varied degrees of consumer control, consumer directed services empower persons with disabilities to meet the challenges of daily living.  The Cash and Counseling Demonstration and Evaluation (CCDE), one model for empowerment and choice for long-term care, seeks to provide increased autonomy to consumers by providing them with a cash alternative and information services to purchase the assistance they require for everyday personal care (Mahoney & Simon-Rusinowitz, 1997).  Surveys conducted in preparation for the CCDE found that at least one third of elderly adults (65 or older) and one half of younger adults (under 65) with disabilities receiving Medicaid personal care services were interested in this approach (Simon-Rusinowitz, Mahoney, Desmond, Shoop, Squillace & Fay, 1997).  Although it is clear that persons with disabilities want and expect to control their own lives, not all may be able to express those desires directly. Thus, the preferences of individuals with cognitive impairments, communication difficulties, and those otherwise unable to make all decisions independently, must sometimes be reflected by surrogate or proxy representatives. 
Surrogate representatives may be someone close, like a friend or neighbor; but are often a family caregiver.  Balancing the preferences and needs of consumers requiring assistance with those of the family caregiver is complex.  The care receiver’s situation may change as cognitive function worsens, for example, and factors such as safety are paramount (Feinberg, Whitlach & Tucke, 2000; Zarit & Goodman, 1990); the family caregiver may have varying levels of ability and senses of obligation (McCullough & Wilson, 1995); and the negative physical, emotional, and financial effects of family caregiving on the caregiver add to the complexity of the additional task of decision-making and representation (Haug, Ford, Stange, Noelker, & Gaines, 1999; Cohen, 1998; Anthony-Bergstone, Gatz, & Zarit, 1998).  Although surrogates are often charged with a number of responsibilities, the complexities surrounding representation, even if combined with caregiving, should not limit consumer choice about the most basic and intimate activities of their daily lives -- such as when to bathe, dress, or eat.  
Studies have shown that impaired consumers (including those with mild to moderate cognitive deficits) are capable of expressing their preferences for everyday living decisions, health status, and/or quality of life.  Friss-Feinberg and Whitlatch (2001) reported in their dyad study of persons with mild to moderate cognitive impairment and their family caregivers (n=51) that impaired individuals were able to state consistent preferences and choices about daily living decisions; and provide accurate and reliable responses to questions about demographics.  These researchers emphasize that the impaired individual “…should be encouraged to discuss their everyday care wishes with their family caregiver.  In turn, this would assist family members by helping them to better understand the wishes and preferences of their loved ones earlier in the disease process…” (pg. 381).  In addition, McHorney (1996) found that mild to moderately cognitively impaired elderly persons (n=36) were as capable as those without cognitive impairments in providing valid and reliable self reports regarding health status and quality of life preferences. That study concludes, in part, that it is inappropriate to exclude individuals with cognitive impairment from reporting their health status preferences. 
However, research has emphasized caregiving practices and outcomes more often than it has emphasized representation of the consumers’ perspective (Feinberg & Whitlatch, 2001; Anthony-Bergstone, Gatz, & Zarit, 1998; Whitlatch, Friss-Feinberg, & Sebesta, 1997).  Cohen (1991) reports this gap has led to a lack of representation of the consumers’ needs in the selection of care strategies.  This gap also points to another unanswered question -- when representation does take place, how accurately do surrogates represent consumers’ wishes regarding their personal care?
Most choice and representation studies have explored end-of-life and health care decision making issues (Hofmann, Wenger, Davis, Teno, Connors, Desbiens, Lynn, & Phillips, 1997; Zweibel, & Cassel, 1989; Ouslander, Tymchuc, & Rahbar, 1989; Wetle, Levkoff, Cwikel, & Rosen, 1988; and High, 1988).  Many of these studies concern high-stake issues (e.g. life and death); medical management and critical care interventions (e.g. chemotherapy or surgery); and legal matters related to advanced planning issues (e.g. advanced directives).  In addition, studies examining how well the opinions of proxies correspond to the care receivers’ acute care preferences are inconsistent -- preferences vary according to the mode of treatment and scenario; are made with imperfect accuracy and can be unreliable (Sulmasy, Terry, Weisman, & Stallings, 1998; Sulmasy, Haller, & Terry, 1994; and Suhl, Simons, Reedyk, & Garrick, 1994).  However, Tomlinson, Howe, Notman, and Rossmiller (1990) found that when respondents representing older persons were explicitly asked to make a "substituted judgement," they came significantly closer to the older person’s preferences than those surrogates who were asked to make their "best recommendations."
Understanding the perspective of the impaired consumer wanting or needing a surrogate; and the extent to which agreement exists between consumers’ wishes and surrogates’ choices is important to encouraging consumer independence and control and to improving quality of life. To investigate representation practices among consumers and surrogates the present study examines survey data made available through the Cash and Counseling Demonstration and Evaluation (CCDE) consumer preference study in New Jersey.  This exploratory study of community-dwelling adults compares responses made by consumers with and without surrogate respondents to examine how well surrogates represent consumers’ wishes regarding their satisfaction with personal care. 
METHODS
Sample
Data for this study come from a telephone survey conducted at The University of Maryland, Center on Aging in 1997.  The current study is a secondary analysis of the New Jersey CCDE preference study database. For more information on the primary CCDE preference study in New Jersey see Mahoney, Desmond, Simon-Rusinowitz, Shoop and Squillace (forthcoming).  Respondents were selected from the original sample pool via a 100% enumeration of eligibles. The total sample size for the New Jersey database equals 683.  There were 526 consumers answering for themselves and 157 consumers with surrogate representatives. 
Instrumentation
	Content validity of the instrument was established via an expert panel (n=7) knowledgeable in aging, disabilities, and survey design and evaluation.  In addition, the instrument was pilot tested with three disabled and elderly individuals to assess administration time and understanding of the survey items. The final survey instrument consisted of four parts totaling 139-items.  The first section asked consumers (or their surrogate representatives) about their satisfaction with their current personal care services (27 items).  After being informed about the various cash option features and support services available, the second section asked consumers (or their surrogate representatives) about their perceptions regarding the cash option (33 items). The third section asked consumers (or their surrogate representatives) to provide some information about themselves including age, gender, race, education, and marital status; and about their background (44 items).  Background characteristics included measures of functional status based on five activities of daily living (ADL’s), an assessment of overall physical health, number of informal caregivers, and experience with interviewing, training, hiring, or supervising workers.  The final section asked their surrogates perceptions of the cash option, information about themselves, and their background (35 items).   
Response Rate
The survey response rate was 60%.  Completed surveys totaled 683 and refusals totaled 457.  The primary reasons respondents gave for refusing to participate in the survey were: 1) feeling too disabled or old (n=143, 31%), 2) no interest in participating in any survey (n=115, 25%), 3) no interest in changing services (n=107, 24%), and 4) hang-up without providing reason (n=92, 20%).  
Data Coding and Operationalization of Constructs
Disability level, a measure of functional status, was calculated by the number of tasks for which consumers “need the help of another person.”  Tasks used in the count are activities of daily living (ADL) variables: getting in/out of bed or chair, taking a bath or shower, dressing, eating, and using or getting to the toilet.  Consumers were asked if they needed help with each of the tasks, and could respond "yes", "no" or "sometimes” to each task.  A "yes" response received a score of 1, a "no" response a 0, and a "sometimes" response a 0.5.  The functional status scale could thus range from 0 to 5; consumers scoring between 0 and 1.5 were considered to be mildly disabled, those scoring between 2 and 3.5 were considered moderately disabled, and those scoring between 4 and 5 were considered severely disabled.  The ADL scale has been used to quantitatively assess functional status (Katz, Hendrick, & Henderson, 1979) and the reliability and validity of the ADL scale are well-documented (McDowell & Newell, 1996; Spector, 1996; Brorsson & Asberg, 1984).
Given that disabilities are defined in terms of ADL and instrumental activities of daily living (IADL) dependencies, Spector (1991) suggests for populations in need of home and community-based services, the IADL measurement (consisting of eight items – meal preparation, laundry, light housework, grocery shopping, money management, taking medicines, making telephone calls, and getting around outside) is also considered a reasonably good measure of cognitive activity.  Spector (1991) suggests that this measure is as useful as other mental or behavioral scales, such as the SPMSQ mental status test in screening for cognitive impairment.  For this study, due to survey length, all eight IADL measures could not be included in the survey.  As such, a subset of two IADL measures that appear most directly related to cognitive disability were used:         1) keeping track of money or bills, and 2) help taking the right amount of prescribed medicine. 
In this study, surrogates represented consumers with cognitive impairments, communication difficulties, and those otherwise unable to make all decisions independently. In the primary CCDE Preference Study, surrogates were instructed by interviewers to answer the questions in the way the consumer would answer if capable of doing so and to have the consumer present, when possible, during the interview to provide response clarification as necessary.
RESULTS 
Surrogate Characteristics  
As seen in Table 1, surrogates (n=157) tended to be under age 65 (74%), and predominantly female (69%).  Fifty-nine percent were Caucasian, 24% were African American and 9% Hispanic.  In addition, most surrogates had a high school education (30%) or some college (24%).  Fifty-four percent were currently married.
[Table 1 here]
As presented in Table 2, 64% of surrogates reported living with a spouse or children.  Eighty-four percent of surrogates were related to the consumer and the vast majority of surrogates (97%) reported helping consumers make “all” decisions (e.g. living arrangements, financial, and medical).  Finally, most surrogates (82%) provided assistance with personal care decision-making.
[Table 2 here]
Demographic Characteristics of Consumers  
Fifty-seven percent of all consumers (n=683) were 65 years of age or older and the majority were female (76%).  Forty-five percent were Caucasian, 34% were African American and 12% Hispanic. The majority of consumers had a high school education (30.9%) or less than a high school education (46%).  Thirty-nine percent were widowed and 31% were single (Table 3).
[Table 3 here]
A number of variables were associated with whether consumers answered on their own behalf or preferred to use a surrogate representative. Bivariate analyses revealed that race was related to respondent status (p<.001).  Forty-one percent of consumers answering on their own behalf were African American as compared to 24% of consumers with surrogate representatives; and more consumers with surrogates were Caucasian (64%) as compared to self-respondent consumers (45%).  Education was also related to respondent status (p<.001).  Sixty-five percent of consumers with surrogates had less than a high school education, as compared to 45% of self-respondent consumers. Finally, marital status was related to respondent status (p<.001).  Consumers with surrogates were more likely to be widowed (43%) or single (40%) as compared to self-respondent consumers, where 38% were widowed and 28% single, respectively.  

Background Characteristics of Consumers  
As shown in Table 4, 55% of all consumers (n=683) lived alone and 26% percent lived with a friend, partner, or relative. Ten percent of all consumers owned their own home.  The majority of all consumers had been employed (76%), however, many were currently retired (67.9%).  When consumers (n=683) were asked to rate their overall health status, 64% rated it "fair" or "poor", compared to 33% who rated it "good,” "very good" or "excellent.” Over half of all consumers (57%) were mildly disabled; 23% were moderately disabled and 20% were severely disabled.  Finally, 45% of all consumers reported needing help with keeping track of bills or money, and 42% reported needing help taking the right amount of medicine.
[Table 4 here]
A number of variables were associated with whether consumers answered on their own behalf or preferred to use a surrogate representative.  Bivariate analyses revealed that the consumers’ living arrangement was related to respondent status (p<.001).  The majority of self-respondents reported living alone (66%) as compared to consumers with surrogates who reported either living with a spouse and/or children (25%) or a friend, partner, or relative (56%).  Previous employment status was also related to respondent status (p<.001).  Eighty-four percent of self-respondent consumers had been previously employed as compared to 51% of consumers with surrogates.  Bivariate analyses also revealed that perceptions of overall health status were related to respondent status (p<.05). Self-respondent consumers were more likely to rate their health status as “fair” or “poor” (67%), as compared to consumers with surrogates (56%).  
In addition, disability level was related to respondent status (p<001).  Thirty-three percent of self-respondent consumers were “moderately” or “severely” disabled; versus 72% of consumers with surrogates.  Finally, the need for help keeping track of bills or money and the need for help taking the right amount of medicine were related to respondent status (p<.001).  Consumers with surrogates were more likely to have need for help keeping track of money or bills (88%) than were self-respondent consumers (33%); and to have need for help in taking the right amount of medicine (83% vs 30%).
As seen in Table 5, the majority all consumers (n=683) reported being in the program for 3 years or longer (61%). The majority of the sample also reported they had informal caregivers (60%), and 42% of the sample had an informal caregiver who lived with the consumer (total).  Eighty-eight percent of consumers reported that they speak the same language as their worker.  In addition, the majority reported feeling “very close” (23%) or “somewhat close” (52%) to their worker.  Twenty-three percent had experience hiring, firing, or interviewing workers and 33% had experience supervising or training workers.  
[Table 5 here]
A number of variables were associated with whether consumers answered on their own behalf or preferred to use a surrogate representative.  Bivariate analyses revealed that the presence of informal caregivers and “live-in” informal caregivers was related to respondent status (p<.001).  Consumers with surrogates were more likely to have more informal caregivers (87%) than were self respondent consumers (52%); and more likely to have informal caregivers who lived with the consumer (70% vs. 28%).  In addition, experience hiring, firing or interviewing any type of worker was related to respondent status (p<.001).  Self-respondents were more likely to have had experience hiring, firing, or interviewing any type of worker (27%) than were consumers with surrogates (10%).  Experience supervising or training any type of worker was also related to respondent status (p<.001).  Self-respondent consumers were more likely to have had experience supervising or training any type of worker (38%) than consumers with surrogates (16%).  
Satisfaction with Worker Characteristics
	As seen in Table 6, 9% of all consumers reported that their worker is frequently late and 7% reported that their worker hurries too much.  Ninety-two percent of all consumers reported that their worker does a good job and 11% of all consumers reported that their worker needs to be more respectful.  
[Table 6 here]
Overall, self-respondent consumers seemed happier with their worker, as compared with consumers who had surrogate representatives.  Bivariate analyses revealed that more self- respondent consumers “disagreed” that their worker hurries too much (91%), as compared to consumers who had surrogate representatives (84%) (p<.01).  In addition, more self-respondent consumers indicated that they “disagreed” (87%) that their worker needs to be more respectful, as compared with consumers with surrogates (82%) (p<.01).  
Multivariate Analysis

Four logistic regression models were calculated to determine if there was a difference in the pattern of responses between self respondent consumers and consumers with surrogate respondents, on four satisfaction variables: 1) worker is frequently late; 2) worker hurries too much; 3) worker does a good job; and 4) worker needs to be more respectful.  After entering into the model, and controlling for, the following consumer attributes: age, gender, race, education, marital status, disability level (ADL), and level of cognition (IADL); the status of the respondent , e.g., whether a surrogate or the consumer gave the response, was entered. This respondent status variable did not independently  predict any of the 4 satisfaction responses (see Table 7). 
[Table 7 here]

DISCUSSION & RECOMMENDATIONS

           The most salient finding of this study is that respondent status was not found to predict satisfaction with personal care.  After controlling for differences in demographics, disability level, and cognition, consumers functioning independently and consumers with surrogate representatives responded similarly to questions about satisfaction with personal care.  This finding suggests that surrogates do represent consumers’ views in this domain.  This finding is encouraging, given that interviewers were trained to ask surrogates to answer the questions in the way the consumer would if capable of doing so, and were reminded of this role throughout the data collection process.  In addition, surrogates were asked to have the consumer present, when possible, during the interview to provide response clarification as necessary.  Tomlinson, Howe, Notman, and Rossmiller (1990) lend support for that interpretation, reporting that when respondents representing older persons preferences were explicitly asked to make a substituted judgement, they came significantly closer to the elderly person’s preferences than those who were asked to make their best recommendation. 
This study also found evidence that many consumers with cognitive impairments and many of those with severe disabilities were able to express their preferences for everyday personal care when responding to the New Jersey telephone survey independently (without a surrogate representative).  Thus, our results also support previous research that concludes the impaired individual is capable of stating everyday preferences and choices (Friss-Feinberg, 2001; McHorney, et al, 1996). 
Practice and Program Implications
	There are a number of strategies that might be employed to maximize the impaired consumer’s ability to express his or her wishes regarding PAS care, to enhance communication between consumers and surrogates, and to improve the quality of services delivered. Surrogates may be provided with information and/or training programs that teach consumer-directed principles to enhance consumer autonomy and to allow for meaningful PAS decision making.  In addition, regular dialogue should be encouraged between consumers and surrogates to improve the caregivers’ understanding of consumers’ PAS care preferences.  Discussions and strategy planning sessions may be especially important for consumers with early stages of dementia, to identify their preferences while they are able to express them (Friss-Feinberg & Whitlach, 2001; Breechling & Schneider, 1993; Cotrell & Schultz, 1993; McAfee, Ruh, Bell & Martichuski, 1989).  
Consultants and service providers, who work with consumers in developing a care plan and provide training in consumer tasks, need education and training regarding aspects of their job that affect consumer autonomy.  These individuals can also be trained to identify factors associated with poor substituted judgements, to improve consumer-surrogate communications, and to assist caregivers in making more accurate substituted judgements. 
Policy Implications
The dominant perspective in consumer-direction has been that it is only for those who can totally self-direct.  Some researchers purport that “the pure model of consumer-directed services assumes a cognitively intact individual who has the energy, determination, and intelligence to take on the responsibilities of hiring, training, directing, and firing workers” (Weiner, Clauser & Kennell, 1995, p.312).  We know from a growing body of literature that it’s not an “all-or-nothing” proposition.  Researchers have shown that consumers with cognitive impairments should be considered legitimate consumers of long-term care (Friss-Feinberg & Whitlatch, 2001; McHorney, et al, 1996).  The present study adds evidence that when surrogates were instructed to represent the consumer -- they seemed to do so -- suggesting the idea of substituting judgement has promise for consumers who need assistance in directing their services. 
Research Recommendations
It is always more difficult to ensure that consumers’ preferences are embodied in caregiving decisions when someone else must speak for them.  This study indirectly examined the representation issue, relying on information from a single source (consumers’ preferences as seen through the eyes of the surrogate) as opposed to examining both perspectives separately (the impaired consumer and their surrogate representative).  Future studies should involve both members of the dyad.  
Future research should also explore surrogate interests and motivations regarding PAS choice and decision-making.  If differences exist in the consumers’ and surrogates’ opinions regarding PAS preferences, this contrast may suggest that surrogates are not completely attuned to the wishes of the consumers they represent, or surrogates are misinterpreting consumers’ wishes.  In addition, other important domains related to consumer preferences should be explored to identify where it may be “easier” or “harder” for surrogates to represent consumers’ views adequately.  
Conclusion
Many consumers with cognitive impairments and many of those with severe disabilities were able to express their preferences for everyday personal care when responding to the New Jersey telephone survey independently (without a surrogate representative). However, surrogate representatives remain key players in implementing consumer-directed programs.  Consumer-directed programs cannot exist for consumers who are represented by surrogates if the surrogate is not representing the consumer's views adequately.  This study provides evidence that surrogates can adequately represent consumer's views about satisfaction with personal care, and thus provides encouragement to continued investigation of the utility of surrogate representatives.   

Table 1. Demographic Characteristics of New Jersey Surrogates  

Characteristic	Surrogate
(N=157)

N   (%)	
Age of Surrogate   
   Under 65     	286	(41.9)
   65 Or Older     	391	(57.2)	1	(00.1)	5	(00.7)	
117  (74.0)
36    (26.0)
	
Gender
  Male
  Female	
48    (30.6)
109  (69.4)
	
Race/Ethnicity
   African American/Black 	233	(34.1)
   Native American   	9	(01.3)
   Asian      	7	(01.0)
   Hispanic      	82	(12.0)
   Caucasian/White   	312	(45.7)
   Biracial      	7	(01.0)
   Don’t Know     	18	(02.6)
   Refused Question
	
39    (24.8)
00    (00.0)
05    (03.2)
15    (09.6)
93    (59.2)
01    (00.6)
02    (01.3)
02    (01.3)	
Education        
   Less Than High School	316	(46.3)
   High School Graduate	211	(30.9)
   Trade Or Vocational School	16	(02.3)
   Some College	81	(11.9)
   Baccalaureate Degree	23	(03.4)
   Some Graduate School	3	(00.4)
   Graduate Degree	20	(02.9)	12	(01.8)
   Refused Question	
15    (09.6)
48    (30.7)
11    (07.0)
39    (24.8)
20    (12.7)
04    (02.5)
19    (12.1)
01    (00.6)
	
Surrogate Marital Status      
   Married      	51	(07.5)
   Widowed     	271	(39.7)
   Divorced     	103	(15.1)
   Separated     	43	(06.3)
   Single      	213	(31.2)
   Partnered     	1	(00.1)
   Refused Question
	
85    (54.2)
16    (10.2)
18    (11.5)
06    (03.8)
28    (17.8)
01    (00.6)
03    (01.9)	

Table 2. Background Characteristics of New Jersey Surrogates 

Characteristic	Surrogate 
(N=157)

N   (%)	
Surrogate Living Arrangement 
       
   Alone      	371	(54.3)
   With spouse and/or children	122	(17.9)
   With friend or neighbor
	182	(26.6	

06    (03.9)
101  (64.3)
50    (31.8)	
Relationship to Consumer

  Spouse
  Relative
  Friend or neighbor
  Other

10    (06.4)
133  (84.7)
03    (01.9)
11    (07.0)	
What kinds of decisions do you help the consumer make?

  All
  Living arrangements
  Financial
  Medical
  Other

130  (97.7)
00    (00.0)
00    (00.0)
00    (00.0)
03    (02.3)	
Type of Surrogate

  Personal care decisions
  Language problems
  Hearing problems
  Don’t know
  Refused question

130	(82.8)
19   (12.1)
05   (03.2)
02   (01.3)
01   (00.6)	

Table 3. Demographic Characteristics of New Jersey Consumers (total), Self-Respondent Consumers, and Consumers with Surrogates

Characteristic	Consumers
(total)
(N= 683)

N   (%)	Self-Respondent Consumers 
(N=526)

N   (%)	Consumers
with surrogates
(N=157)

N   (%)	
Age         
   Under 65     	286	(41.9)
   65 Or Older     	391	(57.2)
   Don’t Know      	1	(00.1)
   Refused Question   	5	(00.7)	
286	(41.9)
391  (57.3)
01	(00.1)
05    (00.7)	
218	(41.4)
302  (57.8)
01    (00.1)
05    (00.7)	
068  (43.3)
089  (56.7)
00    (00.0)
00    (00.0)	
Gender       
   Male      	164	(24.0)
   Female	
164	(24.0)
519  (76.0)	
119	(22.6)
407  (77.4)	045  (28.7)     112  (71.3)	
Race/Ethnicity 
   African American/Black***	233	(34.1)
   Native American   	9	(01.3)
   Asian      	7	(01.0)
   Hispanic      	82	(12.0)
   Caucasian/White ***  	312	(45.7)
   Biracial      	7	(01.0)
   Don’t Know     	18	(02.6)
   Refused Question
	
233	(34.1)
09	(01.3)
07	(01.0)
82	(12.0)
312	(45.8)
07	(01.0)
18	(02.6)
15    (02.2)	
197  (37.5)
08	(01.5)
02	(00.4)
66	(12.5)
218	(41.4)
06	(01.1)
16    (03.1)
13    (02.5)	
36	(22.9)
01	(00.6)
05	(03.2)
16	(10.2)
94	(59.9)
01	(00.6)
02    (01.3)
02    (01.3)	
Education 
   Less Than High School *** 	316	(46.3)
   High School Grad ***      	211	(30.9)
   Trade Or Vocational School	16	(02.3)
   Some College ***      	81	(11.9)
   Baccalaureate Degree ***    	23	(03.4)
   Some Graduate School	3	(00.4)
   Graduate Degree	20	(02.9)
   Don’t Know 	12	(01.8)
   Refused Question
	
316	(46.3)
211	(30.9)
16	(02.3)
81	(11.9)
23	(03.4)
03  (00.4)
20	(02.9)
12	(01.8)
01	(00.1)
	
226	(43.0)
177	(33.6)
09	(01.7)
73	(13.9)
17	(03.2)
02	(00.4)
15	(02.9)
06    (01.1)
01    (00.2)	
90	(57.3)
34	(21.7)
07	(04.5)
08	(05.1)
06	(03.8)
01	(00.6)
05	(03.2)
06    (03.8)
00    (00.0)
	
*** p<.001

Table 3. Demographic Characteristics of New Jersey Consumers (total), Self-Respondent Consumers, and Consumers with Surrogates (continued)

Characteristic	Consumers
(total)
(N= 683)

N   (%)	Self-Respondent Consumers 
(N=526)

N   (%)	Consumers
with Surrogates
(N=157)

N   (%)	

Marital Status 
   Married      	51	(07.5)
   Widowed  ***       	271	(39.7)
   Divorced  ***       	103	(15.1)
   Separated   ***      	43	(06.3)
   Single ***         	213	(31.2)	1	(00.1) 
  	5	(00.7)	

51	(07.5)
271	(39.8)
103	(15.1)
43	(06.3)
213	  (31.3)

36	  (06.9)
202	(38.5)
96	  (18.3)
41	(07.8)
149	 (28.4)

15	(09.6)
69	(43.9)
07	(04.5)
01	(01.3)
64	(40.8)
	
*** p< .001

Table 4. Background Characteristics of New Jersey Consumers (total), Self-Respondent Consumers, and Consumers with Surrogates 

Characteristic	Consumers
(total)
(N= 683)

N   (%)	Self-Respondent Consumers 
(N=526)

N   (%)	Consumers
with Surrogates
(N=157)

N   (%)	
Living Arrangement ***
   Alone      	371	(54.3)
   With spouse and/or children	122	(17.9)
   With friend, partner or relat.	182	(26.6)
	1	(00.1)	

371	(55.0)
122	(18.1)
182	(27.0)	

343	(66.0)
82	(15.8)
95	(18.3)	

28	 (18.1)
40	 (25.8)
87	 (56.1)	
Do you own your own home?     
   Yes      	73	(10.7)
   No       
   Refused question	607	(89.3)	
73	(10.7)
607	(88.9)
03    (00.4)	
56	(10.6)
467	(88.8)
03    (00.6)	
17  (10.8)
140 (89.2)
00	(00.0)	
Have you ever been employed? ***
   Yes      	522	(76.4)
   No      	158	(23.1)	

522	(76.8)
158	(23.2)

441	(84.2)
83	(15.8)

81	(51.9)
75    (48.1)
	
Employment Status
   	158	(23.1)
   Employed full time   	6	(00.9)
   Employed part time   	13	(01.9)
   Unemployed     	131	(19.2)
   Retired      	349	(51.1)
   Full time student    	2	(00.3)
   Part time student    	1	(00.1)
   Homemaker     	8	(01.2)
   Volunteer     	4	(00.6)
	1	(00	

06   (01.2)
13	(02.5)
131	(25.5)
349	(67.9)
00	(00.4)
00	(00.2)
08	(01.6)
04    (00.8)

06    (01.4)
    10    (02.3)
112	(25.3)
291	(67.4)
02    (00.5)
01    (00.2)
07    (01.6)
03    (00.7)

00	 (00.0)
03    (03.7)
19    (23.2)
58    (70.7)
00	(00.0)
00	(00.0)
01	(01.2)
01    (01.2)	
*** p<.001

Table 4.  Background Characteristics of New Jersey Consumers (total), Self-Respondent Consumers, and Consumers with Surrogates (continued) 

Characteristic	Consumers
(total)
(N= 683)

N   (%)	Self-Respondent Consumers 
(N=526)

N   (%)	Consumers
with Surrogates
(N=157)

N   (%)	
Perception of overall physical health * 
   Excellent	26	(03.8)
   Very Good	50	(07.3)
   Good	152	(22.3)
   Fair	226	(33.1)
   Poor	215	(31.5)
   Don’t know	6	(00.9)
   Refused Question	

26	  (03.8)
50	  (07.3)
152	(22.3)
226	(33.0)
215	(31.5)
06    (00.9)
05	(01.2)	

22	 (04.1)
34	 (06.5)
105  (20.0)
184  (35.0)
169  (32.1)
05    (01.0)
07    (01.3)

06	(02.5)
16    (10.2)
47    (29.9)
42    (26.9)
46    (29.3)
01    (00.6)
01    (00.6)	
Disability level ***
  Mild	388	(56.8)
  Moderate	156	(22.8)
  Severe
	
388  (56.8)
156  (22.8)
139	(20.4)
	
346  (65.8)
108  (20.5)
72    (13.7)	
42    (26.8)
48    (30.6)
67    (42.7)

Cognition - help keeping track of bills or money ***
  Yes
  No
  Sometimes

309   (45.8)
338   (50.1)
27     (04.0)

175   (33.3)
325   (62.3)
22     (04.2)

134   (88.2)
13     (08.6)
05     (03.3)

Cognition – help taking medicine ***
  Yes
  No
  Sometimes

285  (42.1)
359  (53.0)
33    (04.9)

157   (30.0)
335   (64.1)
31     (05.9)

128   (83.1)
24    (15.6)
02    (01.3)	
* p<.05   *** p<.001

Table 5. Background Characteristics Related to Cash & Counseling of New Jersey Consumers (total), Self-Respondent Consumers, and Consumers with Surrogates

Characteristic	Consumers
(total)
(N= 683)

N   (%)	Self-Respondent Consumers 
(N=526)

N   (%)	Consumers
with Surrogates
(N=157)

N   (%)	
Length of time in program
  <  6 months
  6 to 11 months
  1 to 2 years
  3+ years
  Don’t know

16	(02.3)
35    (05.1)
193  (28.3)
423	(61.9)
16    (02.3)

15   (02.9)
28   (05.3)
143 (27.2)
327 (62.2)
13    (02.5)

01  (00.6)
07  (04.5)
50  (31.8)
96  (61.1)
03  (01.9)	
Do you have informal care givers?  ***

   Yes      	414	(60.9)
   No

414	(60.9)
266  (39.1)

276  (52.8)
247  (47.2)

138  (87.9)
19    (12.1)
	
Does informal worker live with you? ***
	266	(38.9)
   Yes      	175	(25.6)
   No       	239	(35.0)

175   (42.3)
239   (57.7)

78    (28.3)
198   (71.7)

97   (70.3)
41   (29.7)	
Do you and your worker speak the same language?

Yes
No
Not Certain
Refused Question
	8	(01.2)	

602   (88.2)
61    (08.9)
13    (01.9)
07	(01.0)

480  (91.3)
38    (07.2)
06    (01.1)
02    (00.4)	

122  (77.7)
23    (14.6)
07    (04.5)
05    (03.2)	
***p<.001

Table 5. Background Characteristics Related to Cash & Counseling of New Jersey Consumers (total), Self-Respondent Consumers, and Consumers with Surrogates (continued)

Characteristic	Consumers
(total)
(N= 683)

N   (%)	Self-Respondent Consumers 
(N=526)

N   (%)	Consumers
with Surrogates
(N=157)

N   (%)	
How’s your relationship with your worker?

Very Close
Somewhat Close
Employer/Employee
Unfriendly
Hostile
N/A
Don’t know
Refused Question

160   (23.4)
359   (52.6)
129   (18.9)
06    (00.9)
01    (00.1)
12    (01.8)
09    (01.3)
07    (01.0)	

131  (24.9)
273  (51.9)
102  (19.4)
06    (01.1)
01    (00.2)
01    (00.2)
06    (01.1)
06    (01.1)

29    (18.5)
86    (54.8)
27    (17.2)
00    (00.0)
00    (00.0)
11    (07.0)
03    (01.9)
01    (00.6)	
Any experience hiring, firing or interviewing any type of worker?  ***

   Yes      	159	(23.3)
   No       	514	(75.3)

159  (23.6)
514  (76.4)	

142  (27.5)
374  (72.5)	

17    (10.8)
140   (89.2)
	
Any experience supervising 
or training any type of worker?  ***

   Yes      	224	(32.8)
   No      	451	(66.0)

224  (33.2)
451  (66.8)

198  (38.2)
320  (61.8)

26    (16.6)
131   (83.4)	
*** p<.001

Table 6.  Satisfaction with Worker Characteristics - Perceptions of New Jersey Consumers (total), Self-Respondent Consumers, and Consumers with Surrogates

Characteristic

My worker…	Consumers
(Total)
N = 683

N   (%)	Self-Respondent Consumers
N = 526

N   (%)	Consumers
with Surrogates
N = 157

N   (%)	
Is frequently late

  Agree
  Disagree
  Don’t Know

67    (09.9)
597  (88.6)
10    (01.5)

53    (10.1)
465  (88.4)
08    (01.5)

14    (09.5)
132  (89.2)
02    (01.4)
	
Hurries too much** 

  Agree
  Disagree
  Don’t Know

52   (07.7)
613 (91.2)
07   (01.0)

43    (08.2)
480  (91.4)
02    (00.4)

09    (06.1)
133  (90.5)
05    (03.4)
	
Does a good job

  Agree
  Disagree
  Don’t Know

619  (92.3)
41    (06.1)
11    (01.6)

486  (92.6)
32    (06.1)
07    (01.3)

133  (91.1)
09    (06.2)
04    (02.7)
	
Needs to be more respectful of me ** 

  Agree
  Disagree
  Don’t Know

76    (11.3)
590  (87.8)
06    (00.9)

64    (12.2)
460  (87.6)
01    (00.2)

12    (08.2)
130  (88.4)
05    (03.4)
	
** p<.01

 Table 7.  Final Logistic Regression Models: Respondent Type as a Predictor of 
 Satisfaction with Worker Characteristics 

Dependent Variable	Significance Level
(Predictor Variable)	Significance Level (Control Variables)	Exp (B)	
Q.32 – Worker is frequently late

N=647

	Respondent Type (.362)

	--
Age  (.286)
Gender  (.889)
Race (.890)
Education  (.255)
Marital Status (.800)
Disability Level (.419)
Cognition/Money  (.848)
Cognition/Meds  (.954)	1.445
1.008
1.049
1.039
.652
.880
.740
1.066
.981	
Q.33 – Worker hurries too much

N=645
	Respondent Type (.726)	--
Age  (.613)
Gender  (.965)
Race (.235)
Education  (.585)
Marital Status (.187)
Disability Level (.069)
Cognition/Money (.101)
Cognition/Meds  (.920)	1.002
1.004
.984
1.439
1.207
.471
2.012
1.912
1.439	
Q.34 – Worker does a good job

N=644
	Respondent Type (.688)	--
Age  (.923)
Gender  (.426)
Race (.034)
Education  (.063)
Marital Status (.492)
Disability Level (.061)
Cognition/Money  (.518)
Cognition/Meds  (.319)	1.004
1.001
1.381
2.111
1.923
1.547
2.005
.786
1.485	
Q.37 – Worker needs to be more respectful

N=645
	Respondent Type (.196)	--
Age  (.624)
Gender  (.068)
Race (.844)
Education  (.170)
Marital Status (.740)
Disability Level (.002)
Cognition/Money  (.159)
Cognition/Meds  (.286)	1.616
1.003
1.698
.950
1.490
.867
2.636
1.575
.719	

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