Perceived Quality of Home-Based Care by Consumers Comparing Agency

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					Perceived Quality of Home-Based Care by Consumers:
   Comparing Agency and Self Directed Programs



                      Presented to:
      Division of Advocacy and Independent Living
          Department of Aging and Disabilities



                     Presented by:
               Joy A. Livingston, Ph.D.
               Flint Springs Consulting
                  402 Fletcher Farm Rd.
                  Hinesburg, VT 05461
                    joy@madriver.com




                   October 28, 2003
                                 Executive Summary

In Vermont, as elsewhere in the country, there have been debates on the merits of self
directed compared to agency directed home-based care. Consequently, the DAD wanted
to know if individuals served through agency and self directed (including consumer and
surrogate directed) Waiver models experienced any differences in the quality of care.

A survey study was conducted of all clients in the DAD home-based Waiver program
during June 2003. Excellent return rates (more than 50%) from consumer directed and
agency directed clients, and proportional representation of each Vermont region in the
sample combined to provide generalizable results.

Results clearly indicated that consumers were generally very well satisfied with their
caregivers’ competence, their feelings of safety with caregivers, and their own levels of
choice and control.

Levels of satisfaction were the same across agency, consumer, and surrogate directed
service delivery models.

Data on demographics and levels of need indicated some differences in consumers served
by the three programs, such that consumer directed clients tended to be younger, more
highly educated individuals while surrogate directed clients were more likely to be older,
cognitively impaired individuals. Clients of both types of self directed programs reported
needing help with more ADL and IADL activities than did those served through the
agency directed model.

Overall, the data clearly indicate that consumers are quite satisfied with home-based care.

       As I am home-bound, I’m thankful for all the care givers work and help.

       God bless each one of you that are helping us so very much.

       I am thankful that I am able to remain in my own home thanks to having a
       caregiver. The only other alternative would be a nursing home.

       My mom is one of the lucky ones. She has one of the best caregivers out there.
       This caregiver only comes along once in a lifetime.
                                                    Table of Contents


Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

Home-Based Waiver Service Delivery Models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

Research Questions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . 3

Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . 5

Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

           Survey Respondents: Demographics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

           Survey Respondents: Level of Need & Services Received . . . . . . . . . . . . . . . . . 8

           Perceived Quality of Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Summary and Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11


Appendices

           A: Survey Instrument

           B: Detailed Survey Data Tables: All Measures by Service Delivery Model

           C: Detailed Survey Data Tables: Perceived Quality by County
                                           Introduction

Vermonters aged 18 and over with physical disabilities or age-related disabilities (e.g.,
dementia) may receive home-based care through the DAD Home-Based Medicaid
Waiver program. The Waiver covers the cost of personal care services to help with
Activities of Daily Living (ADL) such as getting out of bed, using the toilet, and taking a
bath or shower. Personal assistance with Independent Activities of Daily Living (IADL)
such as managing money, going shopping, and cleaning house are also covered by the
Waiver.

Waiver funded personal assistance is provided through two basic models: agency
directed and self directed. Consumers of personal care services can select the delivery
model which best suits them, at “no cost” as the approved number of service hours are
the same across programs. The Vermont Department of Aging and Disabilities (DA&D)
oversees the Waiver program and is responsible for approving the number of service
hours each individual may receive under the waiver.

In Vermont, as elsewhere in the country, there have been debates on the merits of self
directed care compared to agency directed care. Consequently, the DA&D wanted to
know if individuals served through these Waiver models experienced any differences in
the quality of care. Specifically, the question was:

        Are there differences in clients’ perception of service quality between agency
        directed and self-directed (including consumer and surrogate directed) Waiver
        models?

A review of recent literature found only one study that specifically addresses this
question. Doty and colleagues1 compared client-directed and professional management
models of personal care service delivery. Client-directed models were defined as those
which “permit clients to hire and fire, schedule, train, and supervise their own personal
assistance service providers.” Family members or friends are permitted as care providers
in the client-directed model. In the professional management model, personal care givers
are employees of authorized home health agencies. The agency hires, fires, trains, and
assigns care givers.

Doty found that persons receiving services through the client-directed programs had
“more favorable outcomes on six diverse dimensions of client outcomes, including two
measures each of empowerment, satisfaction, and quality of life.” While there were
many measures on which there were no significant differences between the two delivery
models, there were no measures on which persons receiving services through home
health agencies fared significantly better than persons in the consumer directed models.


1
 Doty, P., Benjamin, A.E., Matthias, R.E., and Franke, T.M. (1999). In-Home Supportive Services for the
Elderly and Disabled: A Comparison of Client-Directed and Professional Management Models of Service
Delivery. April, 1999: U.S. Department of Health and Human Services and the University of California,
Los Angeles.


                                                   1
                    Home-Based Waiver Service Delivery Models

The Waiver service delivery models in Vermont mirror those studied by Doty and
colleagues. Under the agency directed model, the regional home health agency is
responsible for recruiting, hiring, training, supervising, and scheduling personal care
services for individual consumers. Consumers work with their home health agency to
request services. The home health agency is responsible for scheduling providers,
addressing issues related to absences, and handling all payroll and benefits.

The self directed model has two components: consumer directed services and surrogate
directed services. In both of these components, the consumer or his/her surrogate is
responsible for recruiting, hiring, training, supervising and scheduling personal care
services. Consumers and surrogates are screened for their ability to direct care, and they
become the employer of record. However, all payroll and taxes are managed through an
intermediary services organization. The waiver allows family members to be employed
as personal care providers. Consumers and surrogates are responsible for addressing
absences of personal care providers.

Personal care providers working under the self directed programs receive $10.00 per
hour. There are no benefits, although worker’s compensation and unemployment
insurance are covered. Personal care attendants working through home health agencies
received an average of $8.16 per hour2, while homemakers earned an average of $8.42
per hour3. Data on benefits for either group of home health agency employees is not
available.

All workers in each service delivery model are screened for abuse, neglect, exploitation,
and criminal records histories. Workers in the self-directed model are screened for
motor vehicle violations. Participants in all programs meet the Vermont nursing home
level of care guidelines.




2
  Vermont Assembly of Home Health Agencies report of weighted actual average personal care attendant
wage, January 2003. This figure is based on 8 agencies reporting data for a total of 485 employees.
3
  Vermont Assembly of Home Health Agencies report of weighted actual average homemaker wage,
January 2003. This figure is based on 6 agencies reporting data for a total of 53 employees.


                                                  2
                                    Research Questions

How might the agency directed and self directed service delivery models compare for
Vermont consumers? DA&D was particularly interested in consumers’ experiences of
the quality of services they received. The literature was then reviewed to examine
measures of service quality as perceived by consumers.

Scott Geron4 at the Boston University of Social Work has developed an empirically based
measure of client satisfaction, Home Care Satisfaction Measure (HCSM). The HCSM
has been selected by the federal Administration on Aging as one of its Performance
Outcome Measures. The HCSM is designed to be administered through an interview,
and is divided into subscales which assess different types of services (e.g., home health
aide or personal care services). The subscales assess eight domains of service quality
including competency, choice, accessibility, and dependability.

The Centers for Medicare and Medicaid Services (CMS) have contracted with the
MEDSTAT Group to develop a Consumer Experience Survey (CES). The CES includes
a version for elders and persons with disabilities, although it is still in development5.
Like the HCSM, the CES is designed to be administered through an interview. It
contains four domains: access to care, choice and empowerment, respect and dignity, and
community integration/inclusion.

In the Doty et al study surveys were administered by telephone interview. The survey
assessed several factors including: demographics; service needs; experiences of abuse or
mistreatment; reliability, continuity, and responsiveness of care; and access to regular and
back-up workers. The survey also examined outcome measures including safety,
empowerment, and satisfaction.

Since DA&D did not have the resources needed to conduct an interview study, it was
important to narrow the focus to measures of service quality that might be assessed
through a self-report paper and pencil survey. Moreover, the assessment would have to
focus only on consumer perceptions since resources and data were not available to assess
other measures of quality (e.g., case records).

Given these parameters, DA&D decided to focus on three specific areas of consumer
perceived service quality: competency of care giver; safety, and consumer choice and
control. Using items from the HCSM and CES, a survey instrument was developed (see
Appendix A for a copy of the survey). The survey included items to assess respondent
demographics and ADL and IADL needs. Items to assess quality of service included:



4
 Geron, S. M. The Quality of Consumer-Directed Long-Term Care. American Society on Aging.
www.asaging.org/generations/gen-24-3/qualitycons.html.
5
 The MEDSAT Group (2003). Consumer Experience Survey: Elderly/Disabled (E/D) Version.
Unapproved Draft, February 5, 2003.


                                                3
1. Competency of care giver: The key question was taken from the HCSM “My
   paid care giver knows what to do when helping…” Specific tasks outlined were
   drawn from the CES and included both ADL and IADL activities. Also drawn
   from HCSM was the question: “Is your paid care giver very thorough when
   helping you?”

2. Safety: CES questions were used to assess safety. For example: “Are any of the
   people paid to help you now mean to you, or do they yell at you?” “Have any of
   the people paid to help you ever taken any of your things without asking?” Two
   questions were taken from the Doty study: one about care givers coming to work
   “drunk or under the influence of drugs,” and the other about whether consumers
   “feel safe when you are with the care givers paid to help you.”

3. Choice and control: Based on the HCMS, one item asked if “the people paid to
   help you ignore what you tell them about how you like things done.” From CES
   an item was included to ask who one would talk with “if there was something
   wrong with the help you are getting.” Finally, an item was constructed that asked
   about consumer involvement in “figuring out what type of help and services you
   are able to get.”




                                       4
                                      Methodology

In early June, 2003 survey instruments were mailed to every consumer receiving Waiver
services through agency directed or self directed care models. Surveys were color coded
to identify the specific delivery model: agency directed, consumer directed, and
surrogate directed. Each consumer received a cover letter with the survey describing the
study, its purpose, and voluntary nature. In addition, consumers were told that if they
wished, upon completing the survey they could be entered into a drawing to receive one
of two $50.00 gift certificates to a grocery store with branches throughout Vermont. The
entry form was included at the bottom of the cover letter, and consumers were informed
that they could send the form in with their survey, or under separate cover. In either
event, the entry form and survey would be (and were) kept separately so that names
would not be attached to surveys.

A total of 847 surveys were mailed, 52 (6%) of which could not be delivered successfully
(e.g., outdated addresses that could not be corrected for delivery within the timeframe of
the study). Of the 795 surveys successfully delivered, 314 (40%) were completed and
returned, an excellent response rate for a mailed survey of this type.

Waiver services are primarily provided through agency directed and surrogate directed
models. The response rate for the surrogate directed clients, see Table 1, was much lower
than the other two groups yielding a sample that was over-represented by consumer
directed clients and under-represented by surrogate directed clients. The agency directed
clients were proportionately represented in the sample.


   Table 1: Waiver Clients and Survey Sample
                        Number of
                         Surveys       Percent of   Number of
 Waiver Model          Successfully     Waiver       Surveys     Response      Percent
                        Delivered       Clients     Returned       Rate       of Sample
 Consumer Directed         114            14%          60          53%           19%
 Surrogate Directed        282            36%           52          18%          17%
 Agency Directed           399            50%           202         51%          64%

 TOTAL                     795           100%           314         40%          100%




                                            5
                                                   Results

SURVEY RESPONDENTS: DEMOGRAPHICS

A total of 314 surveys were returned, 309 being fully completed. About one third (34%)
of these surveys were completed by clients on their own, half by clients with some help
(49%), and the rest by surrogates (18%). Not surprisingly, significantly more persons
served by the consumer-directed program completed the survey on their own (69%) than
surrogate directed (15%) or agency directed clients (28%). Most frequently, persons
helping complete the survey were either children (31%) or spouses (23%) of the
consumer.

Each area of the state was accurately represented in the sample. The proportions of
respondents from each county, and as served by each of the three programs within each
county, were consistent with population proportions6.

As shown below in Table 2, in terms of age, survey respondents well represented the
population of clients for each service delivery model. Persons served by the consumer
directed model were significantly younger than those served by the surrogate directed and
agency directed models (F (2,306) = 13.2, p < .001).

       Table 2: Comparison of Age Distribution among Survey Sample and Populations
                                          Survey Sample                           Population
        Age                       Mean      Std Dev.   Range           Mean       Std Dev.    Range
        Consumer Directed          64          16     28 - 94           62           18       23 - 98
        Surrogate Directed         77          16     20 - 98           74           16       20 - 98
        Agency Directed            75          15     23 - 100          73           15      25 - 102

Clients of the consumer directed program were also more likely to have a higher level of
education (X2 (8) = 40.0, p < .001). Indeed, 38% of consumer directed clients had at least
some post-high school education (i.e., some college, Bachelor’s degree, some post
graduate or advanced degree), while only 8% of surrogate directed and 11% of agency
directed clients had post-high school education (see Figure 1).
                             Figure 1: Respondents' Education by Service Model
                       60%
                                                                                                Consumer
                       50%
         Respondents




                                                                                                Surrogate
          Percent of




                       40%
                                                                                                Agency
                       30%
                       20%
                       10%
                       0%
                              less than HS                  HS Diploma                      Post-HS
                                                        Educational Level


6
    Detailed tables outlining results discussed in the report can be found in Appendix B.


                                                        6
The majority of consumer directed clients had physical disabilities (77%), as did agency
directed clients (60%). Surrogate directed clients not only dealt with physical disabilities
(54%), but also dementia or psychiatric disabilities (44%). While only one consumer
directed client had dementia or psychiatric disabilities (2%), about one fifth of the agency
directed clients (19%) also dealt with dementia or psychiatric disabilities.

As shown in Figure 2, surrogate directed clients were significantly least likely among the
three models groups to live alone, and more likely to live with people that might be able
to provide care (i.e., spouse or children) (X2 (4) = 16.2, p < .01).


                                     Figure 2: Survey Respondents' Living Situation
                               70%
      Percent of Respondents




                               60%                                               Consumer
                               50%                                               Surrogate
                                                                                 Agency
                               40%
                               30%
                               20%
                               10%
                               0%
                                            Alone       With Spouse and/or   With Others
                                                             Children




Taken as a whole, these demographic data suggest that persons using the consumer
directed service delivery model were primarily younger adults with physical disabilities,
often with post-high school educational levels. Persons using the surrogate directed and
agency directed models were relatively similar in terms of age and education. However,
consumers with dementia were more likely to be served by the surrogate directed model.
The waiver program covers a limited number of hours of care each day. In order for
persons with dementia to live in the community, they appear to need available family or
friends to provide care as evidenced by surrogate directed clients most frequently living
with others.




                                                         7
SURVEY RESPONDENTS: LEVEL OF NEED & SERVICES RECEIVED

Survey respondents provided information on the degree to which they were able to
perform a range of ADL and IADL tasks. Overall, the data indicated that agency directed
clients had significantly fewer ADL than did both types of self directed clients (see
Figures 3). Agency directed clients reported an average of 2.9 ADL tasks for which they
needed help, as compared to 3.9 for consumer and 3.8 for surrogate directed clients (F
(2,311) = 14.3, p < .001).



                                            Figure 3: Respondents' Reported Need of Help "All the
                                                           Time" with ADL Tasks
                                       100%
            Percent of Respondents




                                                                                                Consumer Directed
                                        80%
                                                                                                Surrogate Directed
                                        60%
                                                                                                Agency Directed
                                        40%

                                        20%

                                            0%
                                                    Bathe      Dress           Transfer             Eat          Toilet


The three groups were also significantly different on IADL needs (F (2,311) = 5.8, p < .01);
in this case surrogate directed clients had more areas of need (5.7) as compared to
consumer (5.1) and agency (5.1) clients. Surrogate directed clients were more likely to
need assistance especially with taking medications and managing finances. These data
are consistent with the profile of surrogate directed clients as more likely to be
cognitively impaired, and in need of family supports to remain at home.


                                            Figure 4: Respondents' Reported Need for Help "All the
                                                           Time" with IADL Tasks

                                                                          Consumer            Surrogate          Agency
     Percent of Respondents




                                     100%

                                     80%

                                     60%

                                     40%

                                     20%

                                      0%
                                                                      n
                                               ok




                                                          op




                                                                                       y




                                                                                                                s
                                                                                                    ns
                                                                   ea




                                                                                                              ce
                                                                                    dr
                                            Co




                                                       Sh




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                                                                Cl




                                                                                                            an
                                                                                              ica
                                                                              La




                                                                                                             n
                                                                                                          Fi
                                                                                            ed
                                                                                           M




                                                                          8
Survey questions also asked respondents if they received help on each of the ADL and
IADL tasks. At least 90% of respondents, across service delivery models, received
assistance with all types of tasks. Indeed, for most of the ADL tasks, 96% or more of
respondents received needed assistance. Overall the data clearly indicate that survey
respondents receive the assistance they need.

On average, DA&D has been approving about 5 hours of service per day for seven days a
week. To supplement that care, 59% of the respondents receive unpaid help from family
or friends. The proportion of clients receiving unpaid help was similar across service
delivery models.

As shown in Figure 5, there were some noticeable differences in the number of hours of
unpaid help received by clients of different programs. Clients of the surrogate directed
model were most likely to receive more than 15 hours of unpaid help each week. Again,
this finding is consistent with the profile of surrogate directed clients as elders with
cognitive impairments living with family members who provide much of their care.




                                Figure 5: Hours per Week of Unpaid Care for Survey
                                                   Respondents
                          70%
 Percent of Respondents




                                    Consumer        Surrogate    Agency
                          60%
                          50%
                          40%
                          30%
                          20%
                          10%
                          0%
                                Less than 5 hours         5 to 15 hours   More than 15 hours




                                                            9
PERCEIVED QUALITY OF SERVICES

Respondents were very satisfied with services provided through all three models of
service delivery. Across all measures of service quality, respondents expressed high
levels of satisfaction. When asked to rate quality of care from their paid care giver, most
respondents felt care was “excellent” (see Figure 6). There were no significant
differences in quality ratings across program model or county (see Appendix B for data
on service delivery models and Appendix C for county data).


                                 Figure 6: Respondents' Quality of Care Rating
                          100%
 Percent of Respondents




                          80%
                                                                                 Consumer
                          60%
                                                                                 Surrogate
                          40%                                                    Agency

                          20%

                           0%
                                  Excellent               Okay                   Poor


Perceived Care Giver Competence

Respondents rated the degree to which their care givers “know what to do” when helping
with ADL and IADL tasks using a five point scale, with 5 = “definitely yes”. Ratings
across all activities ranged from 4.5 to 4.9 reflecting high levels of satisfaction with care
givers’ competence. There were no differences in competence ratings between the three
service delivery models. Ratings of competence were also quite similar across counties.

Nearly all respondents (92%) felt care givers were “very thorough when helping.” Again,
there were no differences in consumer ratings across service delivery models or counties.


Perceived Safety

Consumers reported feeling quite safe and secure with their care givers, at the same
levels across all three service delivery models. In an overall rating, only 2 respondents
said they did not “feel safe with the care givers paid to help;” 96% of respondents felt
safe “all the time.”

Looking at specific areas of safety, only 8% of respondents reported that care givers had
“ever taken any of your things without asking.” As this was a generalized statement, it
could not distinguish between minor transgressions such as a snack out of the refrigerator
without permission and more significant thefts such as household items or personal
property.


                                                    10
Respondents very rarely reported feeling abused or harmed by caregivers. Nearly all of
the consumers (97%) said that care givers had not been “mean to you or rough with you,
or yell at your in an abusive way.” One respondent reported abusive behavior “all the
time,” and four reported abusive behavior “some times.” As with all items assessing
safety, reports of feeling abused or harmed were based on respondents’ perceptions.
There were no attempts to verify reported experiences of abuse as the survey.

Nearly all respondents (98%) reported that care givers rarely came to their homes “drunk
or under the influence of drugs.” Three respondents said this occurred “some times.”


Perceived Choice and Control

Most respondents (70%) felt that care givers “did things they way (they) wanted them
done” “all the time.” Only three respondents (1%) felt that things were done their way
“rarely” or “never.” These results were the same across service delivery models and
counties.

Respondents were also asked if people paid to help “ignore what you tell them about how
you like things done.” Results indicated that consumers were very satisfied with the
degree to their wishes were respected; 64% reported that were they “never” ignored and
20% reported they were “rarely” ignored. While these proportions represent high levels
of satisfaction, it is notable that unlike other measures, there was a subgroup of
respondents who did feel their wishes were ignored sometimes or often (see Figure 7).
This may reflect consumers’ skills to work with care givers as much as care givers
behavior.


                                Figure 7: Respondents' Report of Caregivers' "Ignoring what
                                                     you tell them"

                             100%
    Percent of Respondents




                                         Consumer   Surrogate        Agency
                             80%

                             60%

                             40%

                             20%

                              0%
                                         Ignored                Sometimes         Not Ignored



The survey also asked about the degree to which consumers were involved in making
decisions about their care plan. Consistent with the models of service delivery, clients of
the consumer and agency directed models were significantly more likely to feel they were
involved in care decisions than clients in the surrogate directed model (F (2,290) = 14.6, p


                                                                11
       < .001). Consumer directed clients were most likely to feel they “definitely get to make
       decisions” about their care plans (see Figure 8).


                                       Figure 8: Respondents' Report of Involvement in Care Planning
                                                                Decisions
              Percent of Respondents


                                       100%
                                                                                       Consumer      Surrogate      Agency
                                       80%
                                       60%
                                       40%
                                       20%
                                        0%
                                                Definitely make     Make some           Don't think I'm     Definitely not part of
                                                  decisions          decisions             asked                  decision



       Finally, the survey asked respondents who they spoke with “if there is something wrong
       with the help you are getting.” As shown in Table 3, very few respondents had “no one”
       to talk with, or “didn’t know who to talk with.” Clients of the consumer directed model
       spoke directly with the care giver or “person who is part of the problem” or they spoke
       with their case manager, reflecting a clear understanding of the case manager’s role. In
       the surrogate directed program, consumers were most likely to talk with a family member
       or friend, again reflecting the role of the surrogate in the model. Clients of home health
       agencies went to the agency most often for assistance, which also reflects the agency’s
       role.


       Table 3: Respondents’ Report of Problem Solving Strategy

If something is wrong
with help, who speak                                                   Surrogate
with to get the                               Consumer Directed         Directed        Agency Directed                 Total
problem fixed                                  Frequency Percent   Frequency Percent    Frequency Percent        Frequency Percent
No one                                            2        3%         3         6%         6        3%               11       4%
Person who is part of
the problem                                     17        28%         5        10%          23            11%         45        14%
Caregiver                                       24        40%        17        33%          37            18%         78        25%
Family member or
friend                                          18        30%        29        56%          47            23%         94        30%
Home Health Agency                              11        18%        11        21%          83            41%        105        33%
Case Manager                                    33        55%        18        35%          81            40%        132        42%
Don't know who to talk
with                                             1         2%         0          0%          4            2%          5          2%




                                                                          12
                              Summary and Conclusions

This survey study was designed to determine if clients’ perceptions of service quality
differed between agency and self directed service delivery models. Results clearly
indicated that consumers were equally satisfied with all service delivery models.
Consumers were satisfied with care giver competence, feelings of safety, and choice and
control across agency, consumer, and surrogate directed programs.

The only notable differences between satisfaction ratings among service delivery models
involved consumer involvement in care planning decisions, and these differences were
consistent with the profile of clients in each model. Specifically, clients of the surrogate
directed model were least likely to report involvement in care planning decisions.
Surrogate directed model clients were also most likely to be elders with cognitive
impairments living with family members. On the other hand, consumer directed clients
were most likely to report involvement in care planning decisions. These consumers
were more often younger adults with physical disabilities and higher educational levels.

There was a significant difference in the level of reported need among the service
delivery models, with agency directed clients reporting fewer ADL and IADL needs than
clients of either self directed model. In addition, surrogate directed clients more often
reported needs for assistance with medications and finances than consumer or agency
directed clients. Again, these data are consistent with the cognitive impairments more
prevalent among surrogate directed clients.

All respondents reported that they received the paid help they needed with ADL and
IADL tasks. Nearly two-thirds of the sample also received unpaid help to supplement
the Waiver funded assistance. The most unpaid help was reported for clients of the
surrogate directed program, which is consistent with the profile of elders with dementia
needing round the clock care often provided by family members with whom they live.

When asked for additional comments, respondents overwhelmingly spoke of their deep
satisfaction and value for the Waiver programs. Many expressed gratitude for the Waiver
and the services that enable them to remain in their homes.

         I’ve very happy 99% of the time, and I’m thankful I can ask trustworthy
         caregivers to help me with my concerns.

         My caregiver is a very good caregiver. Everything is done the right way – I am
         happy.

         They do a very good job. I am very happy with my care and being able to stay
         home.

         I am my mother’s only child and I am her primary care giver. If I didn’t have
         home health helpers, I could not take care of her at home.



                                             13
Only 20% of the general respondent comments expressed some type of dissatisfaction.
Most of these comments focused on scheduling problems or limited hours of paid care.

       I do not feel they are given enough hours to always help with my care. Family
       has to fill in more hours than the caregiver is paid to do. Caregiver gives extra
       time on his own beyond the hours he is paid for.

       The regular VNA changes times and cancels some time without notifying me. We
       have to call on more than one.

       When I have a doctor’s appointment and need a bath, one of the home health girls
       will not change the time to fit my time. One of them is very good to change time.

Other comments involved consumer control issues.

       As a consumer, I believe I need more say in my plan of care and the number of
       hours I need.

       I think they should talk more and have more frequent visits to talk about what is
       available for services to me.

       The quality of care is really great. However, it seems as though we could make
       the choice of exactly the help we need.

Taken together, these comments suggest further examination of issues relative to
consumer choice and control. Note that for the most part, respondent comments were
quite positive, but when concerns were raised these tended to involve some aspect of
either funding (e.g., number of paid care giver hours) or even more often choice and
control (e.g., determining the number of needed hours). Responses to specific survey
items were also nearly always at high levels of satisfaction, that is more than 90% of
respondents indicating satisfaction. The only items on which satisfaction rates dipped
relatively lower (into the 70% and 80% range) were around issues of control and choice.

Overall clients of the agency and self directed Waiver programs were very satisfied with
the quality of care they received. As evidenced by the person consumers would talk with
if they had a problem with their care, it appears that individuals have found the service
delivery model that suits them best. Providing consumers with this level of choice
requires continued development of programs with a range of service options which
enable individuals to move through models of service delivery as their needs and
circumstances change.




                                           14
  Appendix A

Survey Instrument
                        Assessment of Quality of Care by Consumers

The Department of Aging and Disabilities wants to know about the quality of care you
are receiving from personal care givers. Personal care givers are the people who help you
with things such as getting dressed, taking showers, making meals, or doing housework.
They may live in your home or come in to your home every day or a few times a week.

The Department wants to know about the quality of care you receive so that we can do
our best to support high-quality services.

We ask that you take a few minutes to let us know about the quality of care you get by
answering the following questions. Do not put your name on this form. All of the
information you give us will be anonymous and confidential. If you have any questions
about the survey, or if you need help completing the survey, please contact Bard Hill at
(802) 241-2335 (or bard@dad.state.vt.us).

 Please return the completed survey in the stamped self-addressed envelope by JUNE
                                      20,2003.

First, please tell us a few things about yourself by checking the appropriate box.

   1. Are you answering questions on this survey by yourself or with help from
      someone?
      (1) □ I am doing this survey on my own
       (2)   □   Someone is helping me do the survey (please describe your relationship to
                 the person that is helping you: _________________________________)
       (3)   □   I am filling in this survey for someone who is not able to do it for
                 themselves (describe your relationship to that person:____ ___________;
                 also, please remember to complete the following questions about that
                 person, not yourself)


   2. Are you
      (1) □ Male
       (2)   □   Female


   3. What is your age? (Please write in your age.)
      _________ years




                                             1
4. What type of disability do you have (Please check all that apply.)
   (1) □ Hearing impairment
   (2) □    Visual impairment
   (3) □    Physical disability that remains constant
   (4) □    Physical disability that changes (some days more present than others)
   (5) □    Dementia or psychiatric disability
   (6) □    Other: please describe_______________________________________

5. What is your highest level of education? (Please check ONE.)
   (1) □ Less than a High School Diploma
   (2) □    High School Diploma
   (3) □    Some college, including Associate degree
   (4) □    Bachelor’s Degree
   (5) □    Some post-graduate work or advanced degree

6. In what county do you live? (Please check ONE.)
   (1) □ Addison                        (8) □ Lamoille
   (2) □    Bennington                     (9)  □   Orange
   (3) □    Caledonia                      (10) □   Orleans
   (4) □    Chittenden                     (11) □   Rutland
   (5) □    Essex                          (12) □   Washington
   (6) □    Franklin                       (13) □   Windham
   (7) □    Grand Isle                     (14) □   Windsor

7. With whom do you live? (Please check ALL that apply.)
   (1) □ I live alone
   (2) □    I live with my spouse
   (3) □    I live with my children
   (4) □    I live with other relatives
   (5) □    I live with others who are not relatives
   (6) □    None of the above, I live with (please describe):
         _____________________________

Next, we would like to ask about the help you might need and receive from care
givers.




                                          2
   8. Can you do the activities listed below on your own, or do you need help? For
      each activity, circle the appropriate number (“1” if you can do the activity on your
      own; “2” if you need help some of the time; and, “3” if you always need help).

Activities                       I can always do       Sometimes I            I need help to
                                 this on my own       need help to do         do this all the
                                                           this                    time
Take bath or shower                      1                  2                        3
Get dressed                              1                  2                        3
Get in/out of bed/chair                  1                  2                        3
Eat meals                                1                  2                        3
Make meals                               1                  2                        3
Shop for groceries                       1                  2                        3
Do housework                             1                  2                        3
Do laundry                               1                  2                        3
Take medications                         1                  2                        3
Use bathroom or commode                  1                  2                        3
Take care of money & bills               1                  2                        3

   9. You just told us about the help you need to do things. Now, we would like to
      know if you actually get help for these activities. Again, circle the appropriate
      number. (“1” if you get help to do the activity; “2” if you do not get help).

Activities                          I get help doing this          I don’t get help doing this
Take bath or shower                           1                                 2
Get dressed                                   1                                 2
Get in/out of bed/chair                       1                                 2
Eat meals                                     1                                 2
Make meals                                    1                                 2
Shop for groceries                            1                                 2
Do housework                                  1                                 2
Do laundry                                    1                                 2
Take medications                              1                                 2
Use bathroom or commode                       1                                 2
Take care of money & bills                    1                                 2

   10. Do you get unpaid help from family or friends with some of these activities?
       (1) □ Yes
       (2)   □   No

   11. If you get unpaid help from family or friends, about how many hours a week do
       they help out?
       (1) □ Less than 5 hours a week
       (2) □     About 5 to 15 hours a week
       (3) □     More than 15 hours a week
       (4) □     I do not get unpaid help from family or friends


                                              3
   12. Which of the following best describes the person or people who are paid to help
       you?
       (1) □ Family member (my spouse, child, or other relative)
       (2) □    Someone hired by myself or a family member
       (3) □   Someone hired by a home health agency. Which agency? (Please check
             ONE.)
               1. □ Addison County Home Health and Hospice
                2.  □   Bennington Area Home Health Agency
                3. □    Caledonia Home Health Care and Hospice
                4. □    Central Vermont Home Health and Hospice
                5. □    Dorset Nursing Association
                6. □    Franklin County Home Health
                7. □    Lamoille Home Health and Hospice
                8. □    Manchester Health Services
                9. □    Orleans, Essex VNA and Hospice
                10. □   Rutland Area VNA and Hospice
                11. □   VNA of Chittenden/Grand Isle Counties
                12. □   Visiting Nurse Alliance of VT/NH

   Now we would like to ask about the quality of care you receive from the paid
   care givers that come into your home. If you have more than one care giver, you
   may answer these questions keeping in mind your primary or most frequent
   caregiver.

   13. Does your paid care giver know what to do when helping you with the following
       activities? (please circle the appropriate number for each activity)

Care giver knows           No,         No, I        Maybe   Yes, I     Yes,       Does not
what to do when         definitely    don’t          yes,   think    definitely    apply
helping me…                not       think so       Maybe     so
                                                      no

Take bath or                1           2             3       4          5           9
shower

Get dressed                 1           2             3       4          5           9

Get in/out of               1           2             3       4          5           9
bed/chair

Eat meals                   1           2             3       4          5           9




                                                4
Make meals                 1              2            3       4          5           9
Care giver knows          No,           No, I        Maybe   Yes, I     Yes,       Does not
what to do when        definitely      don’t          yes,   think    definitely    apply
helping me…               not         think so       Maybe     so
                                                       no

Shop for groceries         1             2             3       4          5            9

Do housework               1             2             3       4          5            9

Do laundry                 1             2             3       4          5            9

Take medications           1             2             3       4          5            9
Use bathroom or
commode                    1             2             3       4          5            9
Take care of money
& bills                    1             2             3       4          5            9


   14. Is your paid care giver very thorough when helping you? (Please check ONE.)
       (1) □ Yes, definitely
       (2) □   Yes, I think so
       (3) □   Maybe yes, maybe no
       (4) □   No, I don’t think so
       (5) □   No, definitely not

   15. How would you rate the quality of care from your paid care giver? (Please check
           ONE.)
       (1) □ Excellent
       (2) □   Okay
       (3) □   Poor



   If you have more than one paid care giver, please keep them all in mind as you
   answer the following questions.

   16. Have any of the people paid to help you ever taken any of your things without
       asking?
       (Please check ONE.)
       (1) □ Yes, definitely
       (2) □   Yes, I think so
       (3) □   I don’t know
       (4) □   No, I don’t think so



                                                 5
   (5)   □   No, definitely not

17. Are any of the people paid to help mean to you or rough with you, or do they yell
    at you in an abusive way? (Please check ONE.)
    (1) □ Yes, all the time
   (2) □     Yes, some times
   (3) □     Sometimes yes, sometimes no
   (4) □     No, rarely
   (5) □     No, never

18. Do the care givers paid to help you ever come to your home drunk or under the
    influence of drugs? (Please check ONE.)
    (1) □ Yes, all the time
   (2) □     Yes, some times
   (3) □     Sometimes yes, sometimes no
   (4) □     No, rarely
   (5) □     No, never

19. Do you feel safe when you are with the care givers paid to help you? (Please
    check ONE.)
    (1) □ Yes, all the time
   (2) □     Yes, some times
   (3) □     Sometimes yes, sometimes no
   (4) □     No, rarely
   (5) □     No, never

20. Do the care givers paid to help you do things the way you want them to be done?
    (Please check ONE.)
    (1) □ Yes, all the time
   (2) □     Yes, some times
   (3) □     Sometimes yes, sometimes no
   (4) □     No, rarely
   (5) □     No, never

21. Do the people paid to help you ignore what you tell them about how you like
    things done? (Please check ONE.)
    (1) □ Yes, all the time
   (2) □     Yes, some times
   (3) □     Sometimes yes, sometimes no
   (4) □     No, rarely


                                        6
      (5)   □   No, never


  22. Have you been involved in figuring out what type of help and services you are
      able to get? (Please check ONE.)
      (1) □ Yes, definitely I get to make decisions about the care and services I
              receive
      (2) □ Yes, I think I am make some decisions about my care plan
      (3) □     No, I don’t think I am asked to make decisions about my care
      (4) □     No, I am definitely not part of the decision about the care and services I
                receive


  23. If there is something wrong with the help you are getting, who do you to talk with
      to get the problem fixed? (Please check ALL that apply.)
      (1) □ No one
      (2) □     The person who is part of the problem
      (3) □     The care giver helping me
      (4) □     A family member or friend
      (5) □     Someone from the home health agency
      (6) □     Someone who helps me get services (like a case manager)
      (7) □     I don’t know who to talk with
      (8) □    Someone else, please describe:
            ________________________________________


  24. Is there anything else you would like to tell us about the quality of care you
      receive from the people paid to help you at home?




                         Thank you for your help with this survey.

Please return the completed survey in the stamped-self addressed envelope no later than
                                   JUNE 20, 2003.



                                              7
                           Appendix B

Detailed Survey Data Tables: All Measures by Service Delivery Model
                                    Consumer Directed      Surrogate Directed       Agency Directed           Total
  Who answered survey              Frequency Percent      Frequency Percent       Frequency Percent    Frequency Percent
  Client alone*                        40       69%            8         15%          56       28%        104       34%
  Client with help                     18       31%           29         56%         103       52%        150       49%
  Surrogate                             0        0%           15         29%          40       20%         55        18%
  Total                                58      100%           52        100%         199       100%       309       100%
  * X = 40.5, df=2, p<.000

 Person helping client               Consumer Directed      Surrogate Directed       Agency Directed           Total
 respond to survey                  Frequency Percent      Frequency Percent       Frequency Percent    Frequency Percent
 Daughter or son                        6        33%           12         41%          28       27%         46       31%
 Spouse                                  2       11%            6         21%          26        25%        34        23%
 Other relative                          2       11%            5         17%          17       17%         24       16%
 Friend                                 3        17%            2          7%           8         8%        13         9%
 Care giver                             3        17%            1          3%           8         8%        12         8%
 Case manager                           1         6%            1          3%          7         7%          9         6%
 Other person                           1         6%            0          0%           5        5%          6         4%
 Blank                                  0         0%            2          7%           4         4%         6         4%
 Total                                  18      100%           29        100%         103       100%       150       100%

                                      Consumer Directed      Surrogate Directed       Agency Directed           Total
Level of education                   Frequency Percent      Frequency Percent       Frequency Percent    Frequency Percent
Less than high school diploma            13       22%           26         51%         104       53%        143       46%
High School Diploma                      24       40%           21         41%          72       36%        117       38%
Some college or Associates               19       32%           2          4%           14        7%         35       11%
Bachelor's degree                         2        3%           2          4%           4         2%         8         3%
Some post graduate or
advanced degree                            2      3%              0       0%              4      2%             6      2%
Total                                      60    100%             51     100%            198    100%           309    100%

                                      Consumer Directed      Surrogate Directed      Agency Directed            Total
Type of Disability                   Frequency Percent      Frequency Percent      Frequency Percent     Frequency Percent
Hearing impairment                       9        15%           17         33%         59       29%          85       27%
Visual impairment                        14       23%           19         37%         57       28%          90       29%
Physical disability that remains
constant                                   46    77%              28     54%             122    60%        196        62%
Physical disability that
changes                                    17    28%              14     27%             40     20%         71        23%
Dementia or psychiatric
disability                                  1     2%              23     44%              39   19%          63       20%
Total                                      60    100%             52     100%            202   100%        314       100%

   Living situation                 Consumer Directed      Surrogate Directed      Agency Directed            Total
   (multiple responses)            Frequency Percent      Frequency Percent      Frequency Percent     Frequency Percent
   Live alone                          21       35%           10         19%         92       46%         123       39%
   Live with spouse                    11       18%           16         31%         64       32%          91       29%
   Live with children                  20       33%           17         33%         18        9%          55       18%
   Live with other relatives            7       12%            8         15%         9         4%          24        8%
   Live with others, not
   relatives                           6        10%           4         8%           6         3%         16         5%




                                                                  1
   Living situation                    Consumer Directed    Surrogate Directed     Agency Directed          Total
   (single response)                  Frequency Percent    Frequency Percent     Frequency Percent   Frequency Percent
   Live alone                             21       35%         10         19%        93       47%       124       40%
   Live with spouse/children              27       45%         32         62%        86       43%       145       47%
   Live with others                       12       20%         10         19%        20       10%        42       14%
   Total                                  60      100%         52        100%       199       100%      311       100%



Ability to perform Activities of           Consumer Directed    Surrogate Directed     Agency Directed          Total
Daily Living (ADL)                        Frequency Percent    Frequency Percent     Frequency Percent   Frequency Percent
Take bath or shower
I can always do this on my own               1         2%            1      2%          18       9%         20       6%
Sometimes I need help to do this             10       17%            7     14%          47      24%         64      21%
I need help to do this all the time          49       82%            43    84%         134      67%        226      73%
Total                                        60       100%           51    100%        199      100%       310      100%
Get dressed
I can always do this on my own               4         7%            3      6%         43       23%         50      17%
Sometimes I need help to do this             24       42%            22    42%          78      41%        124      41%
I need help to do this all the time          29       51%            27    52%         70       37%        126      42%
Total                                        57       100%           52    100%        191      100%       300      100%
Get in/out of bed/chair
I can always do this on my own               11       19%            12    24%         87       47%        110      38%
Sometimes I need help to do this             24       41%            19    39%         53       29%         96      33%
I need help to do this all the time          23       40%            18    37%         45       24%         86      29%
Total                                        58       100%           49    100%        185      100%       292      100%
Eat meals
I can always do this on my own               27       47%            28    56%         136      72%        191      65%
Sometimes I need help to do this             21       37%            17    34%          31      16%         69      23%
I need help to do this all the time          9        16%            5     10%          22      12%         36      12%
Total                                        57       100%           50    100%        189      100%       296      100%
Use bathroom or commode
I can always do this on my own               16       28%            14    27%         97       50%        127      42%
Sometimes I need help to do this             20       34%            18    35%         46       24%         84      28%
I need help to do this all the time          22       38%            20    38%         51       26%         93      31%
Total                                        58       100%           52    100%        194      100%       304      100%




                                                                 2
Ability to Perform Independent Consumer Directed        Surrogate Directed        Agency Directed            Total
Activities of Daily Living (IADL) Frequency Percent    Frequency Percent        Frequency Percent     Frequency Percent
Make meals
I can always do this on my own        3       5%            1           2%         11       6%           15         5%
Sometimes I need help to do this      14     24%            4           8%         56      29%           74        25%
I need help to do this all the time   41     71%            45         90%        126      65%          212        70%
Total                                 58     100%           50         100%       193      100%         301        100%
Shop for groceries
I can always do this on my own        1        2%           0           0%         5        3%           6          2%
Sometimes I need help to do this      8       14%           4           8%         19      10%           31        10%
I need help to do this all the time   50      85%           47         92%        174      88%          271        88%
Total                                 59      100%          51         100%       198      100%         308        100%
Do housework
I can always do this on my own        0        0%           1           2%         3        2%           4          1%
Sometimes I need help to do this      1        2%           2           4%         19      10%           22         7%
I need help to do this all the time   59      98%           48         94%        176      89%          283        92%
Total                                 60      100%          51         100%       198      100%         309        100%
Do laundry
I can always do this on my own        0        0%           1           2%         6        3%           7          2%
Sometimes I need help to do this      3        5%           1           2%         18       9%           22         7%
I need help to do this all the time   57      95%           49         96%        170      88%          276        90%
Total                                 60      100%          51         100%       194      100%         305        100%
Take medications
I can always do this on my own        25      42%           4           8%        75       39%          104        34%
Sometimes I need help to do this      23      39%           10         20%         38      20%           71        23%
I need help to do this all the time   11      19%           36         72%        81       42%          128        42%
Total                                 59      100%          50         100%       194      100%         303        100%
Take care of money & bills
I can always do this on my own        22      37%           1           2%         47      24%           70        23%
Sometimes I need help to do this      17      28%           7          14%         24      12%           48        16%
I need help to do this all the time   21      35%           42         84%        125      64%          188        61%
Total                                 60      100%          50         100%       196      100%         306        100%

                                              Consumer              Surrogate
                                               Directed              Directed       Agency Directed            Total
                                           Mean Std. Dev.        Mean Std. Dev.     Mean Std. Dev.      Mean    Std. Dev.
Number ADL
 Need help sometimes (F2,311=3.1, p<.05)   1.7        1.4        1.6      1.4        1.3     1.2         1.4       1.3
 Always need help (F=5.2, p<.01)           2.2        1.6        2.2      1.6        1.6     1.5         1.8       1.6
 Total number of ADLs (F=14.3, p<.001)     3.9        1.4        3.8      1.4        2.9     1.6         3.2       1.6
Number IADL
 Need help sometimes (F = 4.4, p<.05)      1.1        1.0        0.5      0.9        0.9     1.1         0.9       1.1
 Always need help (F = 9.6, p<.001)        4.0        1.1        5.1      1.3        4.2     1.7         4.3       1.5
 Total number of ADLs (F = 5.8, p<.01)     5.1        1.0        5.7      0.9        5.1     1.3         5.2       1.2




                                                            3
Help with Activities                       Consumer Directed     Surrogate Directed     Agency Directed            Total
of Daily Living(ADL)                      Frequency Percent     Frequency Percent     Frequency Percent     Frequency Percent
Help taking bath or shower
I get help doing this                          57        95%         48        94%         172       86%      277      89%
I don't get help doing this                    3          5%         3          6%          27       14%       33      11%
Total                                          60        100%        51        100%        199       100%     310      100%
Help getting dressed
I get help doing this                          53        90%         44        86%         127       64%      224      75%
I don't get help doing this                    6         10%         7         14%          61       31%       74      25%
Total                                          59        100%        51        100%        198       100%     298      100%
Help getting in/out of bed/chair
I get help doing this                          45        78%         37        74%         95        51%      177      60%
I don't get help doing this                    13        22%         13        26%          93       49%      119      40%
Total                                          58        100%        50        100%        188       100%     296      100%
Help eating meals
I get help doing this                          31        54%         28        57%          62       33%      121      41%
I don't get help doing this                    26        46%         21        43%         128       67%      175      59%
Total                                          57        100%        49        100%        190       100%     296      100%
Help using bathroom or commode
I get help doing this                          46        81%         35        71%         88        48%      169      58%
I don't get help doing this                    11        19%         14        29%          97       52%      122      42%
Total                                          57        100%        49        100%        185       100%     291      100%

                                                                                   Receive Help with
                         Ability to perform Activities of Daily Living (ADL)          Specific ADL
                         Take bath or shower                                   Frequency       Percent
                         I can always do this on my own                            4            20%
                         Sometimes I need help to do this                          54           84%
                         I need help to do this all the time                      217           97%
                         Total                                                    275           89%
                         Get dressed                                           Frequency         Percent
                         I can always do this on my own                            2               4%
                         Sometimes I need help to do this                          99             84%
                         I need help to do this all the time                      120             98%
                         Total                                                    221             76%
                         Get in/out of bed/chair                               Frequency         Percent
                         I can always do this on my own                            9               9%
                         Sometimes I need help to do this                          80             86%
                         I need help to do this all the time                       82             96%
                         Total                                                    171             61%
                         Eat meals                                             Frequency         Percent
                         I can always do this on my own                            32             18%
                         Sometimes I need help to do this                          55             81%
                         I need help to do this all the time                       31             89%
                         Total                                                    118             42%
                         Use bathroom or commode                               Frequency         Percent
                         I can always do this on my own                            17             14%
                         Sometimes I need help to do this                          66             80%
                         I need help to do this all the time                       84             97%
                         Total                                                    167             58%

                                                                 4
Help with Independent Activities     Consumer Directed    Surrogate Directed     Agency Directed          Total
of Daily Living (IADL)              Frequency Percent    Frequency Percent     Frequency Percent   Frequency Percent
Help making meals
I get help doing this                  55       92%            46    92%         174      89%        275      90%
I don't get help doing this            5         8%            4      8%          21      11%         30      10%
Total                                  60       100%           50    100%        195      100%       305      100%
Help shoppring for groceries
I get help doing this                  54       92%            46    92%         176      94%        276      91%
I don't get help doing this            5         8%            4      8%          17       9%         26       9%
Total                                  59       100%           50    100%        187      100%       302      100%
Help with housework
I get help doing this                  57       95%            46    92%         181      92%        284      93%
I don't get help doing this            3         5%            4      8%          16       8%         23       7%
Total                                  60       100%           50    100%        197      100%       307      100%
Help with laundry
I get help doing this                  57       95%            45    92%         178      91%        280      92%
I don't get help doing this            3         5%            4      8%          18       9%         25       8%
Total                                  60       100%           49    100%        196      100%       305      100%
Help taking medications
I get help doing this                  33       61%            46    90%         121      61%        200      66%
I don't get help doing this            21       39%            5     10%          76      39%        102      34%
Total                                  54       100%           51    100%        197      100%       302      100%
Help taking care of money & bills
I get help doing this                  37       67%            44    88%         140      72%        221      74%
I don't get help doing this            18       33%            6     12%          54      28%        78       26%
Total                                  55       100%           50    100%        194      100%       299      100%




                                                           5
                Ability to perform Independent                                  Receive Help with
                Activities of Daily Living (IADL)                                  Specific IADL
                Make meals                                                  Frequency        Percent
                I can always do this on my own                                  4             27%
                Sometimes I need help to do this                                68            93%
                I need help to do this all the time                            198            94%
                Total                                                          270            91%
                Shop for groceries                                          Frequency       Percent
                I can always do this on my own                                  2            33%
                Sometimes I need help to do this                                27           93%
                I need help to do this all the time                            245           92%
                Total                                                          274           91%
                Do housework                                                Frequency       Percent
                I can always do this on my own                                  1            25%
                Sometimes I need help to do this                                19           86%
                I need help to do this all the time                            264           94%
                Total                                                          284           93%
                Do laundry                                                  Frequency       Percent
                I can always do this on my own                                  3            43%
                Sometimes I need help to do this                                17           81%
                I need help to do this all the time                            256           94%
                Total                                                          276           92%
                Take medications                                            Frequency       Percent
                I can always do this on my own                                  16           16%
                Sometimes I need help to do this                                57           80%
                I need help to do this all the time                            121           96%
                Total                                                          194           66%
                Take care of money & bills                                  Frequency       Percent
                I can always do this on my own                                  8            12%
                Sometimes I need help to do this                                41           89%
                I need help to do this all the time                            171           91%
                Total                                                          220           74%




  Receive unpaid
  help from family      Consumer Directed         Surrogate Directed       Agency Directed               Total
  or friends           Frequency Percent         Frequency Percent       Frequency Percent        Frequency Percent
  Yes                      30       50%              33        66%          120       61%            183        59%
  No                       30       50%              17        34%           78       39%            125       41%
  Total                    60      100%              50        100%         198       100%           308       100%



Hours of unpaid help        Consumer Directed          Surrogate Directed       Agency Directed               Total
from family or friends     Frequency Percent          Frequency Percent       Frequency Percent        Frequency Percent
Less than 5 hours a week       12       41%               8         23%           43       35%             63       34%
About 5 to 15 hours a
week                            9         31%             5        14%            24        20%           38      20%
More than 15 hours a
week                           8          28%            22       63%             56       46%            86      46%
Total                          29         100%           35       100%           123       100%          187      100%

                                                              6
      Quality of care      Consumer Directed     Surrogate Directed        Agency Directed             Total
      rating              Frequency Percent     Frequency Percent        Frequency Percent      Frequency Percent
      Excellent               47       80%          39        80%           149       78%          235       79%
      Okay                    12       20%          10        20%            39       20%           61       20%
      Poor                    0         0%          0          0%            3         2%           3         1%
      Total                   59      100%          49        100%          191       100%         299       100%



      Caregiver knows what to           Consumer            Surrogate
      do when helping                    Directed            Directed         Agency Directed            Total
      (5=definitely yes)            Mean Std. Dev.      Mean Std. Dev.        Mean Std. Dev.     Mean     Std. Dev.
      Take a bath                    4.8        0.5      4.8        0.6        4.8      0.7       4.8         0.6
      Getting dressed                4.8        0.5      4.9        0.5        4.7      0.8       4.7         0.7
      Getting in/out of bed/chair    4.9        0.3      4.7        1.0        4.6      1.1       4.7         1.0
      Eat meals                      4.7        0.8      4.7        1.0        4.5      1.2       4.6         1.1
      Use bathroom or
      commode                        4.8       0.7        4.8      0.7         4.5     1.3        4.6        1.1
                                                                                                             0.7
      Make meals                     4.9       0.4        4.9      0.4         4.7     0.8        4.8        0.6
      Shop for groceries             4.9       0.2        4.9      0.5         4.8     0.7        4.9        0.5
      Do housework                   4.9       0.4        4.8      0.6         4.8     0.5        4.8        0.5
      Do laundry                     4.9       0.4        4.9      0.5         4.9     0.6        4.9        1.0
      Take medications               4.6       1.0        4.9      0.3         4.5     1.2        4.6        1.0
      Take care of money and
      bills                          4.5       1.1        4.9      0.3         4.3     1.5        4.5        1.3

    Very thorough when        Consumer Directed       Surrogate Directed     Agency Directed             Total
   helping                   Frequency Percent       Frequency Percent     Frequency Percent      Frequency Percent
   Yes, definitely               45       76%            38        76%        143       75%          226       75%
   Yes, I think so               7        12%            9         18%         36        19%          52        17%
   I don't know                  6        10%            3          6%         7         4%           16        5%
   No, I don't think so          0         0%            0          0%         3         2%           3          1%
   No, definitely not            1         2%            0          0%         2         1%           3         1%
   Total                         59      100%            50        100%       191       100%         300       100%



                                 Consumer Directed       Surrogate Directed      Agency Directed               Total
Feel safe                       Frequency Percent       Frequency Percent      Frequency Percent        Frequency Percent
Yes, all the time                   58       98%            48        96%         181       95%            287       96%
Yes, some times                     1         2%            1          2%          3         2%             5         2%
Sometimes yes, sometimes no         0         0%            1          2%          4         2%             5         2%
No, rarely                          0         0%            0          0%          1         1%             1         0%
No, never                           0         0%            0          0%          1         1%             1         0%
Total                               59      100%            50        100%        190       100%           299       100%




                                                            7
    Taken things            Consumer Directed    Surrogate Directed     Agency Directed          Total
    without asking         Frequency Percent    Frequency Percent     Frequency Percent   Frequency Percent
    Yes, definitely            5         8%         0          0%         9         5%        14        5%
    Yes, I think so            2         3%         1          2%         5         3%        8         3%
    I don't know               1         2%         0          0%         3         2%        4         1%
    No, I don't think so       3         5%         7         14%         26       14%        36       12%
    No, definitely not         48       81%         42        84%        143       77%       233       79%
    Total                      59      100%         50        100%       186       100%      295       100%



Care giver mean, rough or       Consumer Directed    Surrogate Directed     Agency Directed          Total
yell                           Frequency Percent    Frequency Percent     Frequency Percent   Frequency Percent
Yes, all the time                  0         0%          0         0%         1         1%        1         0%
Yes, some times                    1         2%         0          0%         3         2%        4         1%
Sometimes yes, sometimes no        1         2%         0          0%         4         2%         5        2%
No, rarely                         3         5%         6         12%         8         4%        17        6%
No, never                          54       92%         44        88%        173       92%       271       91%
Total                              59      100%         50        100%       189       100%      298       100%

Care giver drunk or under       Consumer Directed    Surrogate Directed     Agency Directed          Total
influence of drugs             Frequency Percent    Frequency Percent     Frequency Percent   Frequency Percent
Yes, all the time                   0        0%          0         0%         0         0%        0         0%
Yes, some times                    0         0%         0          0%         3         2%        3         1%
Sometimes yes, sometimes no        0         0%         0          0%         0         0%        0         0%
No, rarely                         1         2%         0          0%         1         1%        2         1%
No, never                          58       98%         50        100%       186       98%       294       98%
Total                              59      100%         50        100%       190       100%      299       100%



Care giver does things the      Consumer Directed    Surrogate Directed     Agency Directed          Total
way you want them done         Frequency Percent    Frequency Percent     Frequency Percent   Frequency Percent
Yes, all the time                  39       66%         35        70%        135       71%       209       70%
Yes, some times                    11       19%         7         14%         34       18%        52       17%
Sometimes yes, sometimes no        9        15%         7         14%         19        10%       35        12%
No, rarely                         0         0%         0          0%         1          1%       1          0%
No, never                          0         0%         1          2%         1         1%        2          1%
Total                              59      100%         50        100%       190       100%      299       100%

Care giver ignores what you     Consumer Directed    Surrogate Directed     Agency Directed          Total
tell them                      Frequency Percent    Frequency Percent     Frequency Percent   Frequency Percent
Yes, all the time                   1        2%          1         2%          5         3%        7        2%
Yes, some times                    6        10%         3          6%         9         5%        18        6%
Sometimes yes, sometimes no        4         7%          2         4%         19        10%       25        8%
No, rarely                         10       17%         10        20%         39       21%        59       20%
No, never                          38       64%         34        68%        118       62%       190       64%
Total                              59      100%         50        100%       190       100%      299       100%




                                                        8
Involved in figuring out type      Consumer Directed     Surrogate Directed     Agency Directed          Total
of help & services                Frequency Percent     Frequency Percent     Frequency Percent   Frequency Percent
Yes, definitely get to make
decisions                            50        85%          14        29%         88      47%       152      52%
Yes, I think I make some
decisions                             7        12%         21         44%         67      36%        95      33%
No, I don't think I am asked to
make decisions                        1         2%          8         17%         11      6%         20       7%
No, I am definitely not part of
the decision                         1          2%          5        10%          20      11%        26       9%
Total                                59        100%         48       100%        186      100%      293      100%



                                   Involved in figuring out type of help & services
                                   PROGRAM                     Mean     Std. Dev.    N
                                   Consumer Directed            1.2        0.6      59
                                   Surrogate Directed           2.1        0.9      48
                                   Agency Directed              1.8        1.0      186
                                   Total                        1.7        0.9      293




                                                            9
                      Appendix C

Detailed Survey Data Tables: Perceived Quality by County
                Quality of care rating       Quality of care rating
County       Mean       Std. Dev.      N    Excellent    Okay     Poor
Addison       1.2          0.4         24      20          4
Bennington    1.4          0.6         14      9           4        1
Caledonia     1.3          0.5         15      11          4
Chittenden    1.1          0.3         69      61          8
Essex         1.0          0.0         2       2
Franklin      1.3          0.6         37      29          6        2
Grand Isle    1.2          0.4         6       5           1
Lamoille      1.3          0.5         12      9           3
Orange        1.4          0.5         14      8           6
Orleans       1.2          0.4         12      10          2
Rutland       1.2          0.4         20      17          3
Washington    1.2          0.4         19      15          4
Windham       1.1          0.3         17      15          2
Windsor       1.3          0.5         36      24         12
Total         1.2          0.4        297     235         59        3




                               1
                         Care giver knows what to do when helping…
County                    Bathe     Dress Transfer     Eat      Toilet
Addison      Mean          5.0       4.9     4.6       4.4       4.4
             Std.
             Deviation     0.2       0.4     1.3        1.4      1.5
Bennington   Mean          4.5       4.7     4.5        4.9      4.5
             Std.
             Deviation     1.0       0.9     1.2        0.3      1.4
Caledonia    Mean          4.7       4.6     5.0        4.6      5.0
             Std.
             Deviation     1.1       0.7     0.0        0.8      0.0
Chittenden   Mean          4.9       4.8     4.9        4.6      4.8
             Std.
             Deviation     0.4       0.7     0.6        1.1      0.9
Essex        Mean          5.0       5.0     5.0        5.0      5.0
             Std.
             Deviation     0.0       0.0     0.0         .       0.0
Franklin     Mean          4.8       4.6     4.3        4.0      4.2
             Std.
             Deviation     0.7       1.1     1.5        1.6      1.5
Grand Isle   Mean          4.4       4.8     4.5        4.7      5.0
             Std.
             Deviation     1.3       0.4     1.0        0.6       .
Lamoille     Mean          4.8       5.0     5.0        4.2      5.0
             Std.
             Deviation     0.6       0.0     0.0        1.8      0.0
Orange       Mean          4.6       4.8     4.8        4.8      4.9
             Std.
             Deviation     0.9       0.6     0.4        0.7      0.4
Orleans      Mean          4.8       4.8     4.8        4.8      4.9
             Std.
             Deviation     0.5       0.4     0.4        0.5      0.4
Rutland      Mean          4.7       4.7     4.8        4.8      4.8
             Std.
             Deviation     0.7       0.7     0.6        0.6      0.6
Washington   Mean          4.8       4.8     4.7        5.0      4.2
             Std.
             Deviation     0.6       0.4     0.5        0.0      1.5
Windham      Mean          4.8       4.9     5.0        5.0      4.9
             Std.
             Deviation     0.5       0.2     0.0        0.0      0.3
Windsor      Mean          4.8       4.7     4.4        4.5      4.5
             Std.
             Deviation     0.4       0.8     1.3        1.2      1.2
Total        Mean          4.8       4.7     4.7        4.6      4.6
             Std.
             Deviation     0.6       0.7     1.0        1.1      1.1




                                 2
                         Care giver knows what to do when helping…
County                     Cook     Shop   Clean     Laundry Medication   Finances
Addison      Mean           4.6      5.0    4.9        4.8       4.6         3.9
             Std.
             Deviation      1.0     0.2     0.3      0.9        1.3         1.8
Bennington   Mean           4.8     4.9     4.8      4.9        4.4         4.4
             Std.
             Deviation      0.4     0.3     0.6      0.3        1.3         1.5
Caledonia    Mean           5.0     5.0     4.9      5.0        5.0         4.8
             Std.
             Deviation      0.0     0.0     0.3      0.0        0.0         0.4
Chittenden   Mean           4.8     4.9     4.9      4.9        4.6         4.5
             Std.
             Deviation      0.5     0.3     0.4      0.3        1.0         1.2
Essex        Mean           5.0     5.0     5.0      5.0        5.0         5.0
             Std.
             Deviation      0.0     0.0     0.0      0.0        0.0         0.0
Franklin     Mean           4.5     4.5     4.8      4.7        4.1         4.1
             Std.
             Deviation      1.1     1.3     0.8      1.0        1.5         1.7
Grand Isle   Mean           5.0     5.0     5.0      5.0        5.0         5.0
             Std.
             Deviation      0.0     0.0     0.0      0.0        0.0         0.0
Lamoille     Mean           4.7     5.0     4.9      5.0        5.0         4.8
             Std.
             Deviation      0.7     0.0     0.3      0.0        0.0         0.5
Orange       Mean           5.0     4.8     4.6      4.7        4.9         4.0
             Std.
             Deviation      0.0     0.4     0.7      0.5        0.4         1.4
Orleans      Mean           4.9     4.9     4.9      4.9        4.9         5.0
             Std.
             Deviation      0.3     0.3     0.3      0.3        0.4         0.0
Rutland      Mean           4.8     5.0     4.7      4.7        4.9         4.9
             Std.
             Deviation      0.6     0.0     0.7      0.7        0.3         0.3
Washington   Mean           4.6     4.9     4.8      4.9        4.9         4.6
             Std.
             Deviation      1.0     0.3     0.5      0.3        0.3         1.3
Windham      Mean           4.5     5.0     5.0      5.0        4.9         4.7
             Std.
             Deviation      0.7     0.0     0.0      0.0        0.3         0.8
Windsor      Mean           4.8     4.7     4.7      4.9        4.3         4.3
             Std.
             Deviation      0.5     1.0     0.7      0.6        1.3         1.5
Total        Mean           4.8     4.9     4.8      4.9        4.6         4.5
             Std.
             Deviation      0.7     0.6     0.5      0.5        1.0         1.3




                                      3
County                       Care giver is thorough
Addison      Mean                     1.2
             Std.
             Deviation                0.5
Bennington   Mean                     1.4
             Std.
             Deviation                0.6
Caledonia    Mean                     1.5
             Std.
             Deviation                0.8
Chittenden   Mean                     1.3
             Std.
             Deviation                0.5
Essex        Mean                     1.0
             Std.
             Deviation                0.0
Franklin     Mean                     1.5
             Std.
             Deviation                1.1
Grand Isle   Mean                     1.3
             Std.
             Deviation                0.8
Lamoille     Mean                     1.1
             Std.
             Deviation                0.3
Orange       Mean                     2.1
             Std.
             Deviation                1.2
Orleans      Mean                     1.3
             Std.
             Deviation                0.5
Rutland      Mean                     1.3
             Std.
             Deviation                0.6
Washington   Mean                     1.3
             Std.
             Deviation                0.5
Windham      Mean                     1.3
             Std.
             Deviation                0.6
Windsor      Mean                     1.3
             Std.
             Deviation                0.6
Total        Mean                     1.4
             Std.
             Deviation                0.7




                         4
                   Respondent feels safe when with care giver paid to help
                                          Sometimes
             Yes, all the Yes, some yes, sometimes         No,
County          time        times            no           rarely      No, never       Total
Addison          26                                                                    26
Bennington        15                                                                   15
Caledonia        14                          1                                         15
Chittenden        65                         1                                         66
Essex             2                                                                    2
Franklin         36                                         1                          37
Grand Isle        6                                                                     6
Lamoille         10                                                                    10
Orange           14                                                                    14
Orleans          11                                                       1            12
Rutland           21                         1                                         22
Washington        15           3             1                                         19
Windham           16                         1                                         17
Windsor          34            2                                                       36
Total           285            5             5              1             1           297




                          Care giver has taken things without asking
               Yes,       Yes, I think   I don't   No, I don't think No, definitely
County       definitely       so          know            so              not         Total
Addison                                     1              5              19           25
Bennington                                                 4              10           14
Caledonia                                                 3               12           15
Chittenden       7             2            1              5              50           65
Essex                                                                      2           2
Franklin         2             1                          3               31           37
Grand Isle       1                                                         5            6
Lamoille                                                                  10           10
Orange                                                    2               12           14
Orleans                        1                          2                9           12
Rutland          2                          1              3              16           22
Washington                     1                          4               13           18
Windham          1             3            1              1              11           17
Windsor                                                   4               32           36
Total           13             8            4             36             232          293




                                             5
                            Care giver is mean, rough or yells in abusive way
             Yes, all the        Yes, some     Sometimes yes,
County          time               times         sometimes no      No, rarely No, never   Total
Addison                                                                1         24        25
Bennington                                                             3         12        15
Caledonia                                             1                          14        15
Chittenden                            2               3                5         56        66
Essex                                                                             2        2
Franklin          1                                                    1         35        37
Grand Isle                                                                        6        6
Lamoille                                                                         10        10
Orange                                                                 1         13        14
Orleans                                                                2         10        12
Rutland                                                                2         20        22
Washington                           1                                           18        19
Windham                               1               1                          15        17
Windsor                                                                2         34        36
Total             1                   4               5               17        269       296




                                      Care giver arrives at home drunk or
                                            under influence of drugs
                                      Yes, some
              County                    times          No, rarely  No, never   Total
              Addison                                                 26        26
              Bennington                                              15        15
              Caledonia                                    1          14        15
              Chittenden                   1               1          64        66
              Essex                                                    2        2
              Franklin                    1                           36        37
              Grand Isle                                               6         6
              Lamoille                                                10        10
              Orange                                                  14        14
              Orleans                                                 12        12
              Rutland                                                 22        22
              Washington                                              19        19
              Windham                      1                          16        17
              Windsor                                                 36        36
              Total                        3               2         292       297




                                                   6
              Care giver does things the way you want
                            them done
                             Some       Yes &
County        All the time   times       No     Rarely   Never    Total
Addison            18           4         3                1       26
Bennington         10           3         2                        15
Caledonia           9          4          2                        15
Chittenden         46          13         7                        66
Essex               2                                              2
Franklin           31           3         2                1       37
Grand Isle          5          1                                   6
Lamoille            6           1         3                        10
Orange              9                     5                        14
Orleans             7          2          3                        12
Rutland            16           4         2                        22
Washington         12          3          3       1                19
Windham            13           3         1                        17
Windsor            24          10         2                        36
Total              208         51         35      1        2      297



                     Care giver ignores what you tell them
               All the       Some        Yes &
 County         time          times       No      Rarely Never   Total
 Addison               1             2         1        5   16       25
 Bennington                          1         3        4    6       14
 Caledonia                                     1        5    9       15
 Chittenden            1             3         5       13   46       68
 Essex                                                       2         2
 Franklin              2             1         2        7   26       38
 Grand Isle                          1                       4         5
 Lamoille                                      2             8       10
 Orange                              4         1        4    6       15
 Orleans                             1                  7    4       12
 Rutland                             1         2        3   16       22
 Washington                          2         3        4    9       18
 Windham               2             1         1        1   12       17
 Windsor                             1         4        5   26       36
 Total                 6            18        25       58  190     297




                                   7
                         Involved in figuring out type of help &
                                        services
                         Definitely      Some
      County              decide         times      Rarely   Never     Total
      Addison                9              9         3         3       24
      Bennington             8              4         2                 14
      Caledonia              8             6                    1       15
      Chittenden            44             13         5         4       66
      Essex                  2                                           2
      Franklin              17             11         4         6       38
      Grand Isle             2              3                            5
      Lamoille               5              4                   1       10
      Orange                 8              4         2         1       15
      Orleans                7              4         1                 12
      Rutland               10              5         1         5       21
      Washington             5             9                    3       17
      Windham                9              7                   1       17
      Windsor               17             15         2         1       35
      Total                151             94        20        26      291




                    Talk with if there is something wrong with help receiving
                                                          Home
                       Problem                           Health       Case      Don't
County       No one     Person       Caregiver   Family Agency      Manager     know
Addison        1           3              7         8       11         14
Bennington                 1              4         5       3          8
Caledonia                 2                         4       7          6
Chittenden     6          12             19        18       20         32        2
Essex                     1               2         1       1          1
Franklin                  5               8         8      15          14        1
Grand Isle                1               2                 2          2         1
Lamoille                   1              1         1       5          5
Orange                    2               5         7       9          5
Orleans        1          4               6         7       1          4
Rutland                    3              6        10       5          10        1
Washington     1          1               3         9      10          5
Windham        1          2               5         3       7          7
Windsor        1          7              10        12       7          18
Total          11         45             78        93      103        131        5




                                         8