Personal care satisfaction among aged and physically disabled Medicaid beneficiaries.

Abstract

We analyzed survey data from 2,325 Medicaid home and community-based services (HCBS) beneficiaries in six States to estimate satisfaction with personal care services. We constructed an eight-item scale rating various aspects of paid assistance and estimated satisfaction for the total sample and for older and younger persons with disabilities. Younger persons with significant health problems and those residing in group settings were less satisfied. Higher unmet need for assistance with activities of daily living (ADLs), and instrumental activities of daily living (IADLs) was associated with decreased satisfaction, and matching race between a client and paid caregiver was associated with significantly increased satisfaction in all age groups.

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Personal Care Satisfaction Among Aged and Physically ?
Disabled Medicaid Beneficiaries?
Galina Khatutsky, M.S., Wayne L. Anderson, Ph.D., and Joshua M. Wiener, Ph.D.
We analyzed survey data from 2,325
Medicaid home and community-based services
(HCBS) beneficiaries in six States to estimate
satisfaction with personal care services. We
constructed an eight-item scale rating vari­
ous aspects of paid assistance and estimated
satisfaction for the total sample and for older
and younger persons with disabilities. Younger
persons with significant health problems and
those residing in group settings were less
satisfied. Higher unmet need for assistance
with activities of daily living (ADLs), and
instrumental activities of daily living (IADLs)
was associated with decreased satisfaction,
and matching race between a client and paid
caregiver was associated with significantly
increased satisfaction in all age groups.
IntroductIon
One of the key rationales for expanding
HCBS is the assumption that satisfaction
with non-institutional long-term care (LTC)
services is higher than with nursing home
care. However, measuring and ensuring
quality of care in the home and community
setting is at an early level of development
compared to nursing home care (Geron,
1996; Kane and Huck, 2000; Montgomery
and Kosloski, 1995; Weissert et al., 1983).
Much less is known about the quality
of HCBS than nursing home care, even
though increasing numbers of people are
receiving paid care at home (Wiener and
Brown, 2005). Reliable measures and data
The authors are with RTI International. The research in this
article was supported by CMS under Contract Number 500­
96-005. The statements expressed in this article are those of
the authors and do not necessarily reflect the views or policies
of RTI International or the Centers for Medicare & Medicaid
Services (CMS).
on quality of care for nonskilled HCBS,
such as personal care, homemaker ser­
vices, and adult day health care, are not
readily available. In contrast, CMS gathers
a great deal of data on nursing homes and
home health agencies, although no quanti­
tative data on the views of beneficiaries are
routinely collected.
Developing measures of quality for
HCBS is difficult partly because of the spe­
cial characteristics of the service (Wiener
and Tilly, 2003). HCBS cover a variety of
disparate services, which are provided in
large numbers of physically-dispersed loca­
tions, making data collection difficult and
expensive. Moreover, the measures are not
well-developed, and collecting data from
persons with cognitive impairments or
high levels of disability is difficult (Kane,
1999). In addition, States are reluctant
to establish detailed standards for HCBS
because they fear replicating the rigidity of
nursing homes. However, as expenditures
for HCBS increase (U.S. Congressional
Budget Office, 2004), policymakers are
focusing more on quality of care for these
services. For example, CMS has launched
a major initiative to improve the quality
assurance systems for Medicaid-funded
home care (Stanton, 2003).
In addition to health outcomes and
costs, one important component of qual­
ity of care is satisfaction with services.
Satisfaction relates to how beneficiaries
experience the care received compared to
their standards or expectations (Linder-
Peltz, 1982). Satisfaction measures can pro­
vide important information about interper­
sonal aspects of care, such as interactions
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and communication between providers and
clients, clients’ perceptions on how much
providers respect, understand and listen
to them, and whether clients are treated
with dignity (Aharony and Strasser, 1993;
Keepnews, 2003).
Although satisfaction with care received
at home is now recognized as an impor­
tant outcome (Geron et al., 2000), little is
known about what factors affect satisfac­
tion with a range of home care services,
including personal assistance with ADLs
and IADLs. People who use home care and
home health services typically report high
levels of satisfaction (Office of Inspector
General, 1995; Geron et al., 2000), but pre­
vious research found that the social desir­
ability effect—the tendency of respondents
to provide an answer they think an inter­
viewer wants to hear—leads to reporting of
high levels of satisfaction. High satisfaction
ratings may also be related to clients’ fears
that negative ratings may result in an inter­
ruption of needed services.
Several studies examined Medicaid per­
sonal care services under 1915 (c) waiver
programs and found that client satisfaction
is positively associated with having more
choice and control (Doty, Kasper, and
Litvak, 1996), and that Medicaid beneficia­
ries receiving personal care under consum­
er directed programs were more satisfied
than those getting their services via tradi­
tional agency-based programs (Foster et
al., 2003; Benjamin, Matthias, and Franke,
2000; Beatty et al., 1996). A study by
McCall et al. (2004) found that satisfaction
with Medicare home health services is
also associated with interpersonal aspects
of client-staff interaction.
In reviewing research on patient satisfac­
tion, Aragon and Gesell (2003) acknowl­
edged that no generally accepted theory
of patient satisfaction has emerged in the
published health care research. Geron
and colleagues (2003) provide a detailed
overview of the factors affecting overall
satisfaction with health care and note that
few prior studies specifically analyze satis­
faction with HCBS. In studying correlates
of satisfaction with health care services,
researchers usually examine demographic
characteristics and health status.
It often is assumed that the LTC needs
and goals of older people are different from
those of younger people with physical dis­
abilities, which may affect satisfaction with
personal assistance services (Wiener and
Sullivan, 1995). Younger people with physi­
cal disabilities often are thought to be more
interested in independence, self-sufficiency,
and participating in the normal activities of
people without disabilities (Batavia, 2003).
In contrast, older people with disabilities
are often assumed to be too sick, frail, dis­
abled, or cognitively impaired to take an
active role in managing their care (Cohen,
1990; Simon-Rusinowitz and Hofland, 1993;
Wiener and Sullivan, 1995; Kane, 1999).
Little empirical research exists to assess
these assumptions and their effect on sat­
isfaction with HCBS. The literature on sat­
isfaction with acute care generally shows
a positive association between patient sat­
isfaction and age, although not all studies
have found this relationship (Aharony and
Strasser, 1993; Davies and Ware, 1988;
Greenley, Young, and Schoenherr, 1982).
Earlier research points to (1) a strong
negative relationship between self-report­
ed health and functional status and satis­
faction with care; (2) poorer health and
higher impairment levels resulting in less
satisfaction; and (3) mixed findings on the
effects of race, ethnicity, and age (Haviland
et al., 2003; Coughlin, Long, and Kendall,
2002; Pascoe and Attkisson, 1983). For
example, one study found that Asians and
Pacific Islanders are less satisfied with
their health care than other groups, with
the exception of Black respondents, who
have comparable or higher satisfaction
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ratings than White respondents (Haviland
et al., 2003). Other studies found that
White respondents report higher satisfac­
tion with services than other racial groups
(Pascoe and Attkisson, 1983). Geron et al.
(2000) found no association between satis­
faction with home care services and age or
race, but a negative relationship between
physical disability and satisfaction. It is
also important to note that dissatisfaction
with health care services may also nega­
tively affect physical and emotional health.
While not focusing on LTC and HCBS
specifically, prior research indicates that
race, language, and cultural concordance
between patients and health care provid­
ers is another salient variable that affects
satisfaction with care. Most studies find
that patient-physician race concordance
positively affects the perceived quality of
care and increases satisfaction with health
care services (Saha et al., 1999; LaVeist
and Nuru-Jeter, 2002; LaVeist and Carroll,
2002; Shin and Moon, 2005). There is some
evidence that these matches are also impor­
tant in the HCBS setting. When home care
agencies and adult day care centers hire
providers from ethnic minority groups, it
substantially increases participation from
the respective ethnic communities (Gage
et al., 2004).
Although less studied, social charac­
teristics and living arrangements are also
important factors that may affect satis­
faction with services, especially for the
younger physically disabled population.
While we found no studies examining
this relationship among people with physi­
cal disabilities, several studies of living
arrangements among people with intel­
lectual and developmental disabilities sug­
gest there is a preference for independent
living with supports in one’s own home
rather than for supervised living in a facil­
ity or other staffed community residence
(Lakin, 2005; Kishi et al., 1988; Stancliffe
and Abery, 1997). Group residence for
people with intellectual and developmental
disabilities was associated with low levels
of individual choice and personal control
because paid staff made many of the deci­
sions (Emerson and Hatton, 1996; Kishi
et al., 1988; Stancliffe, 1995; Stancliffe and
Wehmeyer, 1995; Wehmeyer and Metzler,
1995). Consistently, in a study of board
and care homes, Hawes (2005) found that
elderly and nonelderly residents of mixed-
age facilities were less satisfied with ser­
vices than those who lived independently.
The goals of this study were to develop a
measure of satisfaction with paid personal
assistance provided through Medicaid and
to identify demographic, health/functional
status, and social/residential predictors of
satisfaction with these services. Because it
is often argued that younger people with
physical disabilities have different expec­
tations concerning home care than older
people, we examined the study sample in
total and separately for persons under and
over age 65.
MetHods
survey
The study used survey data gathered
from 2,597 community-residing Medicaid
beneficiaries receiving HCBS in six States—
Alabama, Kentucky, Maryland, Wisconsin,
Washington, and Michigan (Snell et al.,
2005).1 The States were chosen to represent
a range of developed and developing HCBS
systems. The survey was conducted by
Mathematica Policy Research, Inc., as part
of a larger CMS-funded study of Medicaid
HCBS (Wiener, Tilly, and Alecxih, 2002).
The survey was fielded between May 2003
and June 2004, with the sample allocated
proportionally among States based on the
1 Wisconsin home care beneficiaries residing in counties par­
ticipating in the Family Care demonstration were excluded from
the sampling frame.
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number of HCBS beneficiaries. The sample
frame included older persons and younger
people with physical disabilities. The intent
of the sample design was to exclude people
with developmental disabilities, although
there may be a few respondents with intel­
lectual disabilities that were included.2
Because of the major policy interest in
differences between older and younger per­
sons with physical disabilities, the survey
sample was stratified by age (under age 65
versus age 65 or over).
This survey provides a rare opportunity
for highly frail individuals to voice their con­
cerns and describe their satisfaction with
personal assistance services. Surveying
such impaired populations is known to be
difficult, and to ensure that data collected
were of high quality, special modifications
to survey design and procedures, includ­
ing proxies and frequent fatigue probes,
were used.
Respondents participated in the survey
directly or via proxy (paid and unpaid care­
givers) and included participants living in
their own homes and residents of assisted
living facilities and other group settings.
The survey, which took about 36 min­
utes to complete, was conducted primar­
ily through telephone interviews using a
computer-assisted telephone interviewing
(CATI) system (N = 2,458) with some in-
person interviews (N = 143).3 The overall
survey response rate was 72 percent, with
28 percent of respondents using a proxy.
Most of the proxy responses were pro­
vided by unpaid caregivers.
Although there was no question on the
survey about why a proxy respondent was
needed, having a proxy often signifies men­
tal health or cognitive problems or substan­
tial physical disability or frailty. In our study
2 Data on Medicaid HCBS beneficiaries with developmental dis­
abilities analyzed for this project will be presented elsewhere by
other authors.
3 Four observations were later determined to be duplicates and
were removed from the sample.
sample, self-respondents had 3.2 IADL and
2.2 ADL limitations on average compared
to 3.8 IADL and 3.8 ADL limitations among
respondents with proxies. While unmet
need was generally low in this popula­
tion, respondents with proxies had slightly
lower unmet need than self-respondents
(0.4 ADLs/IADLs versus 0.7 ADLs/IADLs).
Unpaid caregivers’ relationships varied by
age: among younger persons with physi­
cal disabilities, parents and other relatives
provided most of the unpaid care (23 per­
cent and 23 percent, respectively) followed
by non-relatives (20 percent) and spouses
(13 percent); for aged Medicaid recipients,
most of the unpaid care was given by adult
children and daughters/sons in law (61.9
percent) followed by other relatives (17
percent) and spouses (14 percent).
statistical analysis
In predicting satisfaction with personal
care services, we developed an eight-item
scale ranging from 0 to 100. We estimated
an ordinary least squares model that was
right-censored at a scale value of 100 to
account for the approximately one-half of
all observations with the maximum value
(55 percent for the overall sample, 52
percent for the sample younger than age
65, and 58 percent of the sample age 65
or over). The shape of the distribution of
the remaining part of the satisfaction scale
allowed us to assume the properties of a
normal distribution.
We estimated State-level fixed effects to
capture unobserved heterogeneity across
States such as differences in HCBS pro­
grams. We estimated summary statistics
using probability weights adjusted for non-
response and post-stratification and strati­
fied estimates by State, but did not do so
with the regression models because we
estimated fully specified models incorpo­
rating State effects.
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We estimated three regressions on the
dependent variable that was created to
measure satisfaction: one regression for
the overall analytic sample, one for the sub­
group of respondents younger than age 65,
and one for the respondent subgroup age 65
years or over. The two populations are like­
ly to differ in their expectations and in the
services or public programs utilized. First,
younger physically disabled adults may
have higher expectations for participating
in the workforce and community life, and
subsequently might be more demanding
(less satisfied) than elderly respondents.
Second, these persons may differ in their
eligibility for and participation in govern­
ment programs (e.g., Older Americans Act
and Medicaid services). Estimating satis­
faction for these subgroups allowed us, in
part, to account for these differences and
determine whether satisfaction levels dif­
fered between the two age groups.
dependent variable
To examine satisfaction with paid per­
sonal assistance, a subsample of 2,325
self-respondents and unpaid caregiver
proxies who provided responses to eight
survey items was selected to construct the
Satisfaction with Paid Personal Assistance
Scale (SPPAS).4 These items measure
overall satisfaction, as well as interpersonal
aspects of care provided by paid caregivers,
such as communication with paid caregiv­
ers, how problems get resolved, how often
paid caregivers get impatient or angry, and
how well paid caregivers are trained (Table
1). Paid caregivers providing personal care
to Medicaid HCBS beneficiaries can be
hired through an agency or organization,
or employed directly by respondents’ fami­
lies, if the State has a consumer-directed
4 Paid caregivers acting as proxy respondents were not asked
service satisfaction questions, and were not included in the
study sample.
program. In consumer directed programs,
personal care recipients are allowed to
hire family members or friends to pro­
vide services. While one-half of sample
respondents in Washington State hired a
paid caregiver who was a family member,
friend, or neighbor, only a very small pro­
portions of sample members in Michigan
and Wisconsin did so. Sample respondents
from Kentucky, Alabama, and Maryland do
not have a consumer-directed option.
Prior to the scale construction, we per­
formed several analytic steps to address
issues of response grouping, survey item
construction, and dummy variables. Two
original items required rescaling. For the
item “Has it ever been difficult to get
problems resolved or fixed?” we combined
no responses with never had a problem.
For the item “Is paid caregiver compe­
tent and well trained?” we combined the
“sometimes/depends”
“some helpers are, and some are not.” As
the SPPAS was constructed, several items
were reversed so that higher scores would
indicate more positive outcomes. The scale
was set to a missing value if more than four
items had missing responses. Dummy vari­
ables were scaled 0 or 100, three-response
items were scaled 0, 50, and 100; four-
response items were scaled 0, 33, 67, and
100; and five-response items were scaled 0,
25, 50, 75, and 100.
The scale ranged from 0 to 100 with
a mean of 93.9 (standard error = 11.2)
and Cronbach’s (1951) alpha of 0.7. We
evaluated the eight-item scale using fac­
tor analysis, which showed one dominant
factor (eigenvalue 2.9). This factor loaded
uniformly on all the variables, predicting
a high correlation with the SPPAS scale,
which was constructed as a mean of all
items. The correlation between the scale
and the factor was 0.97.
category with
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ciaries, including age, sex, and race.
Under this domain, we also included a





Table 1?
Distribution of Variables Comprising the Satisfaction with Paid Personal Assistance Scale: 2004?
?
Variable?
All?Survey??
Respondents??
Respondents?
Under?Age?65?
Respondents
Age?65?or?Over
N?
How Happy Overall With the Paid Care Received??
Very?Happy??
Somewhat?Happy?
Somewhat?Unhappy?
Very?Unhappy?
?
Has It Ever Been Difficult To Get Problems Resolved Or Fixed?
No?
Yes?
?
How Well Get Along With Paid Caregiver?
Very?Well?
Well?
Not?Very?Well?
Not?at?all?well?
?
Any Trouble Communicating With Paid Caregiver?
No?
Yes?
?
Problems of Paid Caregiver Ignoring Survey Participant??
Never?
Seldom?
Sometimes?
Often?
Very?often?
?
Problems With Paid Caregiver Treating Survey Participant Badly?
Never?
Seldom?
Sometimes?
Often?
Very?Often?
?
Is Paid Caregiver Competent and Well Trained??
Yes?
Sometimes?
No?
?
Is Paid Caregiver Respectful?
Yes?
Sometimes?
No?
2,325?
?
0.776?
0.186?
0.026?
0.012?
?
?
0.899?
0.101?
?
?
0.799?
0.189?
0.009?
0.003?
?
?
0.929?
0.071?
?
?
0.852?
0.084?
0.054?
0.006?
0.003?
?
?
0.951?
0.029?
0.012?
0.004?
0.003?
?
?
0.933?
0.035?
0.032?
?
?
0.966?
0.018?
0.017?
1,108?
?
0.766?
0.200?
0.025?
0.011?
?
?
0.863?
0.137?
?
?
0.803?
0.184?
0.009?
0.004?
?
?
0.920?
0.080?
?
?
0.822?
0.110?
0.052?
0.010?
0.005?
?
?
0.938?
0.037?
0.017?
0.007?
0.002?
?
?
0.932?
0.037?
0.031?
?
?
0.960?
0.018?
0.022?
1,217?
?
0.787?
0.172?
0.027?
0.013?
?
?
0.938?
0.062***
?
?
0.795?
0.195?
0.008?
0.002?
?
?
0.939?
0.061?
?
?
0.883***
0.057***
0.057?
0.002**
0.001?
?
?
0.964**
0.020*
0.008?
0.001*
0.005?
?
?
0.935?
0.032?
0.032?
?
?
0.971?
0.018?
0.011*?
??*Statistically?significant?at?p<0.10.??
?**Statistically?significant?at?p<0.05.?
***Statistically?significant?at?p<0.01.?
Significance?testing?is?between?respondents?under?age?65?and?respondents?age?65?or?over?for?each?category.?
NOTE:?Results?are?weighted?by?wgt_pltnr.?
SOURCE:?RTI?analysis?of?the?Mathematica?Policy?Research’s?Home?and?Community-Based?Services?Survey,?2004.?
Independent variables?
variable to indicate when care recipients
and primary paid caregivers were of the
same race or both reported Hispanic
origin.5 Income was not included as
a variable because all survey respon­
dents were very low-income Medicaid
Independent variables were grouped into
three basic domains (details on variable
construction are presented in Table 2).
• Demographic characteristics of benefi-?
5
there is ethnic/racial match because clients and providers are
related.
Data limitations preclude further investigations of whether
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HealtH care FInancIng revIew/Fall 2006/Volume 28, Number 1
Table 2
Variable Construction and Means of Descriptive Characteristics of the Sample: 2004
?
?
All?Survey??
Respondents?
Respondents
Characteristic?
Variable?Construction?
Respondents??
Under?Age?65?? Age?65?or?Over?
N?(Unweighted)?
?
2,325?
1,108?
1,217?
?
?
?
?
?
Satisfaction?with?Paid?Personal??
?
?
?
?
??Assistance?Scale?
Eight-item?scale?ranging?from?0?to?100?
93.9?
93.0?
94.8***
Demographics?
?
Under?44?Years?
Dummy?variable?for?respondent's?age?group?
0.189???????????
0.369???????????
—?
45-64?Years?
Dummy?variable?for?respondent's?age?group?
0.323???????????
0.631???????????
—?
65-74??
Dummy?variable?for?respondent's?age?group?
0.196???????????
—?
0.400?
75-84?Years?
Dummy?variable?for?respondent's?age?group?
0.194???????????
—?
0.397?
85?Years?or?Over?
Dummy?variable?for?respondent's?age?group?
0.099???????????
—?
0.202?
Male??
Dummy?variable?for?respondent's?gender?
0.260???????????
0.337???????????
0.180***
White??
Dummy?variable?for?respondent's?race?
0.727???????????
0.722???????????
0.733?
Black??
Dummy?variable?for?respondent's?race?
0.164???????????
0.172???????????
0.156?
Asian??
Dummy?variable?for?respondent's?race?
0.083???????????
0.087???????????
0.079?
Other?Race??
Dummy?variable?for?respondent's?race?
0.025???????????
0.019???????????
0.032?
Matching?Race??
Dummy?variable?=1?if?survey?participant?and?main?paid?caregiver?report?the?
?
??same?race?or?Hispanic?origin?
0.738???????????
0.742???????????
0.734?
?
?
?
?
?
Health and Functional Status?
?
?
?
?
Fair/Poor?Health??
Dummy?variable?for?self-reported?health?status?
0.679???????????
0.677???????????
0.682?
Good/Very?Good?Health??
Dummy?variable?for?self-reported?health?status?
0.287???????????
0.278???????????
0.295?
Excellent?Health?
Dummy?variable?for?self-reported?health?status?
0.034???????????
0.045???????????
0.023**
Number?of?IADL?Limitations??
Four-item?count?scale?ranging?from?0?to?4;?1?for?client?needs?help?with?each?IADL? 3.262???????????
3.272???????????
3.252?
Number?of?ADL?Limitations??
Six-item?count?scale?ranging?from?0?to?6;?1?for?client?needs?help?with?each?ADL?
2.430???????????
2.475???????????
2.382?
Proxy?Responding??
Dummy?variable=1?if?proxy?responded??
0.171???????????
0.142???????????
0.201***
Ever?Institutionalized??
Dummy?variable=1?if?ever?been?a?resident?or?patient?in?a?nursing?home?
0.185???????????
0.159???????????
0.211***
Some?or?Great?Deal?of?Pain??
Dummy?variable=1?if?experienced?pain?4?weeks?prior?to?the?survey?
0.823???????????
0.816???????????
0.830?
Having?Pressure?Sores?
Dummy?variable=1?if?had?sores?6?months?prior?to?the?survey?
0.093???????????
0.116???????????
0.069***
Bladder/Bowel?Difficulties??
Dummy?variable=1?if?had?incontinence?problems?6?months?prior?to?the?survey?
0.570???????????
0.563???????????
0.576?
Unmet?Needs?for?ADLs?and?IADLs??
10?item?count?scale?ranging?from?0?to?10;?1?for?each?unmet?need?in?the?month?
?
??prior?to?the?survey?
0.638???????????
0.763???????????
0.508***
?
?
?
?
?
Refer?to?footnotes?at?the?end?of?the?table.
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HealtH care FInancIng revIew/Fall 2006/Volume 28, Number 1
Table 2—Continued
Variable Construction and Means of Descriptive Characteristics of the Sample: 2004
?
?
All?Survey??
Respondents?
Respondents
Characteristic?
Variable?Construction?
Respondents??
Under?Age?65?? Age?65?or?Over?
Social Characteristics and Residence?
?
?
?
?
Social?Participation??
Dummy?variable=1?if?went?out?for?social/recreational?activities?at?least?once?
?
??a?week?prior?to?the?survey?
0.789???????????
0.847?
0.729***?
Live?in?a?Group?Setting??
Dummy?variable=?1?if?respondent?lives?in?adult?foster?care,?group?home?or?
?
??assisted?living?
0.129???????????
0.091???????????
0.169***?
State?1??
Dummy?variable?for?the?State?of?residence?
0.070???????????
0.054???????????
0.087***?
State?2??
Dummy?variable?for?the?State?of?residence?
0.111???????????
0.097???????????
0.126***?
State?3??
Dummy?variable?for?the?State?of?residence?
0.042???????????
0.027???????????
0.057***?
State?4??
Dummy?variable?for?the?State?of?residence?
0.331???????????
0.455???????????
0.202***?
State?5??
Dummy?variable?for?the?State?of?residence?
0.104???????????
0.088???????????
0.122**?
State?6??
Dummy?variable?for?the?State?of?residence?
0.341???????????
0.279???????????
0.407***?
**??Statistically?significant?at?p<0.05.?
?
?
?
?
***?Statistically?significant?at?p<0.01.?
?
?
?
?
Significance?testing?is?between?respondents?under?age?65?and?respondents?age?65?or?over?for?each?category.?
?
?
?
?
NOTES:??Results?are?weighted.?ADL?is?activity?of?daily?living.?IADL?is?instrumental?activity?of?daily?living.?
?
?
?
?
SOURCE:?RTI?analysis?of?the?Mathematica?Policy?Research’s?Home?and?Community-Based?Services?Survey,?2004.?
?
?
?
?
76

Page 9

tus of personal assistance recipients,
including self-reported health status,
number of limitations in six ADLs (bath­
ing, dressing, eating, transferring, walk­
ing across the room, and toileting), and
number of limitations in four IADLs
(cooking, managing medications, shop­
ping, and doing light housework). We
also created a composite of 10 items that
asked about unmet needs for ADL and
IADL assistance, a count variable rang­
ing from 0 to 10. Additional health status
indicators included prior nursing home
use, recent pain or pressure sores, and
bladder/bowel incontinence. A variable
for proxy survey respondent was used to
control for cognitive impairment in the
sample population.
• Social? characteristics and residence,
including social involvement and par­
ticipation; living in a group setting such
as assisted living, group or adult foster
home; and State of residence.
Moreover, among the independent vari­
ables used in regressions, health status
(excellent, very good/good and fair/poor)
was imputed based on survey respondents’
ADL impairment for about 1 percent of
the total sample for which a response was
missing.


















































Although most of the satisfaction rat­
ings appeared similar between the two age
groups of interest, some differences were
observed. More than twice the propor­
tion of young physically disabled survey
respondents reported difficulties in resolv­
ing or fixing problems with their paid care­
giver compared to older people (14 versus
6 percent).
Table 2 presents summary statistics for
the independent and dependent variables
for the total sample, for younger persons
with physical disabilities, and for older
respondents. On the scale from 0 to 100,
survey respondents rated their satisfac­
tion with personal care at about 94 (93 for
young adults with physical disabilities and
95 for elderly). By design, the sample was
almost evenly split between those age 65
or over (52 percent) and those under age
65 (48 percent). Among young adults with
physical disabilities, about 37 percent were
under age 45 and 63 percent were ages 45­
64. For the older sample, about 20 percent
were age 85 or over, and the rest were split
evenly under and over age 75.


beneficiaries; 87 percent of respondents
had annual incomes of $10,000 or less, so
there was little variation across the study
sample.
• Self-reported health and functional sta­
results
descriptive Findings
Table 1 presents the distribution of vari­
able components comprising the SPPAS for
the total sample and separately for younger
people with physical disabilities and age 65
or over. HCBS beneficiaries reported high
levels of general satisfaction and with vari­
ous aspects of their personal care. Overall,
about 77 percent of respondents were “very
happy” with paid care received, and about
19 percent were “somewhat happy.” About
10 percent of respondents reported ever
having difficulties resolving or fixing prob­
lems they encountered with their paid care­
giver, and only 7 percent reported trouble
communicating with the paid caregiver.
Almost all (99 percent) got along “well” or
“very well” with their paid caregiver, and
85 percent never experienced a problem of
a paid caregiver ignoring them. Less then
5 percent complained about ever being
treated badly by the paid caregiver. Slightly
over 93 percent considered their paid care­
giver competent and well trained, and about
97 percent found them respectful.
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Overall, 26 percent of respondents were
male but only 18 percent of older respon­
dents were male, compared to 34 percent
of younger adults with physical disabili­
ties. In terms of race, 73 percent were
White respondents, 16 percent were Black
respondents, and slightly over 8 percent
were Asian, without much difference in
racial distribution between young adults
with physical disabilities and respondents
age 65 or over. For about 74 percent of
respondents in the total sample and in both
age groups, primary paid caregivers were
of the same race as respondents.
In all States, to qualify for personal care
assistance, either though Medicaid HCBS
waivers or State plan services, a person
needs to have substantial health problems
and functional limitations; this is reflected
in the low levels of self-reported health and
functional status. Overall, about 68 percent
of the total sample reported poor or fair
health, and only 3 percent reported excel­
lent health (5 percent among young adults
with physical disabilities and 2 percent
among older adults).
The survey sample was characterized
by fairly high levels of frailty, which are
somewhat similar among elderly and non-
elderly subgroups; on average, survey
respondents reported 2.4 limitations in
ADLs and slightly more than three limita­
tions in IADLs. About 17 percent of our
study sample received proxy help to fill
out the survey (14 percent for young
adults with physical disabilities and 20
percent for older adults), further indicating
the presence of physical or mental health
limitations requiring assistance. Slightly
over one-half of the sample reported some
kind of incontinence problem (bladder or
bowel).
Additionally, more than 18 percent of
beneficiaries had been in a nursing facil­
ity at some previous point in time (16
percent for young adults with physical dis­
abilities, and 21 percent for older adults).
Disturbingly, the great majority (about
82 percent for both subgroups) reported
some or a great deal of pain in the month
prior to the survey, and approximately
9 percent of the sample (12 percent for
young adults with physical disabilities and
7 percent for the older group) reported
having pressure sores within the 6 months
prior to participating in the survey.
The number of unmet needs is an indica­
tor of whether beneficiaries think they are
getting all the services they require. It is
rather surprising that survey respondents
reported less than one unmet ADL/IADL
need on average. Younger physically dis­
abled beneficiaries reported slightly higher
unmet ADL/IADL needs than the elderly.
Social participation is another important
measure of whether HCBS improve the
life of their recipients by allowing them to
maintain normal social activities despite
their impairments. Overall, 79 percent of
survey respondents reported getting out
of the house for some kind of social or rec­
reational activity at least once during the
week prior to the survey. In terms of social
participation, younger respondents got out
of the house more often than the elderly.
Although most respondents lived at
home, a significant minority lived in group
settings. About 13 percent of respondents
reported living in a group setting (9 percent
for younger adults with physical disabilities
and 17 percent for older respondents).
Table 3 presents a zero-order correlation
matrix for all the variables that comprise
the SPPAS. All components are signifi­
cantly (p < 0.05 or higher) and moderately
correlated. The range of the correlation
coefficients between 0.2 and 0.4 confirms
that the items are similar enough to belong
in an index, but dissimilar enough that the
index as a whole is better than their indi­
vidual measures.
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HealtH care FInancIng revIew/Fall 2006/Volume 28, Number 1
Table 3
Correlation of Variables Comprising the Satisfaction with Paid Personal Assistance Scale: 2004
Variable?
(1)?
(2)?
(3)?
(4)?
(5)?
(6)?
(7)
How?happy?overall?with?the?paid?care?received?(1).?
?
?
?
?
?
?
Has?it?ever?been?difficult?to?get?problems?resolved?or?fixed?(2).?
??0.2745**?
?
?
?
?
?
How?well?get?along?with?paid?caregiver?(3).?
???0.3556**?
0.1701**?
?
?
?
?
Any?trouble?communicating?with?paid?caregiver?(4).?
?0.2077**?
0.1709**?
0.2010**?
?
?
?
Problems?of?paid?caregiver?ignoring?survey?participant?(5).?
??0.3623**?
0.2968**?
0.2637**?
0.2665**?
?
?
Problems?with?paid?caregiver?treating?survey?participant?badly?(6).??
??0.2954**?
0.2204**?
0.2773**?
0.1632**?
0.4131**?
?
How?competent?and?well?trained?is?paid?caregiver?(7).?
???0.3446**?
0.3251**?
0.2113**?
0.1604**?
0.3289**?
0.2515**?
How?respectful?is?paid?caregiver?(8).?
??0.3648**?
0.2091**?
0.3084**?
0.2001**?
0.3237**?
0.3541**?
0.3430**
**?Statistically?significant?at?p?<?0.05.?
?
?
?
?
?
?
SOURCE:?RTI?analysis?of?the?Mathematica?Policy?Research’s?Home?and?Community-Based?Services?Survey,?2004.?
?
?
?
?
?
?
79

Page 12

—?
—?
0.82?
1.39?
-1.74?
-4.35?
-1.85?
2.73?
5.84?

?—
—
1.374?
1.723?
1.591?
1.630***
2.421?
4.043?
1.364***

Table 4
Predicting Satisfaction with Paid Personal Assistance Scale Censored Normal Regression Results
?
?
?
Unweighted?N?
?
Variable?
Model?I?
All?Survey?
Respondents?
2,301?
?
Coefficient?
Model?II?
Respondents???
Under?Age?65?
1,101?
?
Coefficient?
Model?III?
Respondents
Age?65?or?Over?
1,200? ?
?
Coefficient?
Standard?
Error?
Standard?
Error?
Standard
Error
Demographics
Under?44?Years?
45-64?Years?
75-84?Years?
85?Years?or?Over??
Male?
Black??
Asian?
Other?Race?
Race?Match?
-5.81?
-0.87?
0.79?
1.98?
-1.23?
-1.62?
2.27?
2.50?
5.15?
1.50***?
1.29?
1.42?
1.74?
1.06?
1.22?
1.83?
3.26?
1.01***?
-4.80?
—?
—?
—?
-0.61?
0.98?
6.07?
0.47?
5.06?
1.483***?
?
?
?
1.430?
1.826?
2.722**?
5.234?
1.486***?
Health and Functional Status
Fair/Poor?Health?
Good/Very?Good?Health?
Number?of?IADLs?
Number?of?ADLs?
Proxy?Responding?
Ever?Institutionalized?
Some?or?Great?Deal?of?Pain?
Pressure?Sores?
Incontinence?
Unmeet?ADL/IADL?Needs?
2.13?
-0.70?
0.60?
0.67?
-4.39?
-2.94?
-3.97?
-1.44?
-1.91?
-3.09?
2.64?
2.66?
0.52?
0.27**?
1.24***?
1.19**?
1.32***?
1.54?
0.97**?
0.28***?
4.14?
-1.89?
0.82?
0.61?
-6.37?
-5.27?
-6.25?
-1.39?
0.00?
-3.55?
3.361?
3.382?
0.724?
0.377?
1.895***?
1.850***?
1.947***?
2.060?
1.434?
0.373***?
-1.43?
-1.95?
0.37?
0.77?
-2.69?
-1.04?
-2.25?
-1.95?
-3.65?
-2.50?
4.370?
4.425?
0.742?
0.391**
1.625?
1.529?
1.761?
2.344?
1.281***
0.410***
Social Characteristics and Residence
Social?Participation?
Live?in?a?Group?Setting?
State?1?
State?2?
State?3?
State?4?
State?5?
Constant?
2.25?
-2.74?
3.50?
5.86?
0.49?
3.83?
2.05?
99.85?
1.07**?
1.50?
1.64**?
1.34***?
1.85?
1.47***?
1.95?
3.58?
2.75?
-6.01?
4.77?
6.67?
8.71?
5.31?
6.21?
97.04?
1.717?
2.444**?
2.552?
2.061***?
3.289***?
1.995***?
3.049?
4.772?
2.64?
-0.33?
3.19?
5.64?
-3.21?
2.75?
-1.44?
101.96?
1.336**
1.868?
2.121?
1.745***
2.199?
2.266?
2.481?
5.301?
?**Statistically?significant?at?p?<?0.05.??
***Statistically?significant?at?p?<?0.01.??
NOTES:?IADLs?is?instrumental?activities?of?daily?living.?ADLs?is?activities?of?daily?living.?
SOURCE:?RTI?analysis?of?the?Mathematica?Policy?Research’s?Home?and?Community-Based?Services?Survey,?2004.?
Multivariate Findings
Three censored regression models pre­
dicting satisfaction with home and commu­
nity-based personal care assistance were
estimated, one for all survey respondents
(Model I), a second for respondents young­
er than age 65 (Model II), and one for those
age 65 or over (Model III). For Model I (all
survey respondents) the sample size was
2,301, and 1,267 observations were right-
censored; for Model II (under age 65) the
sample size was 1,101, and 585 observa­
tions were right-censored; and Model III
(age 65 or over) had 1,200 observations, of
which 682 were right-censored.
Table 4 presents the results for all three
models. Few of the demographic charac­
teristics appeared to be associated with
satisfaction with personal care services.
Compared to beneficiaries age 65-74, being
very young (under age 45) is significantly
and negatively related to satisfaction in the
total sample (Model I), and when the sam­
ple was restricted to young persons with
physical disabilities (reference group age
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Page 13

44-65 in Model II); however no age effect
was detected in the sample of those age
65 or over. Minority racial status was not
associated with satisfaction with personal
assistance for total survey respondents,
but younger Asians with disabilities were
significantly more satisfied than White
respondents; among older persons, minor­
ity racial status, and being a Black respon­
dent in particular, was related to significant
decreases in satisfaction with these ser­
vices compared to White respondents.
Matching race between survey partici­
pant and paid caregiver was associated
with a five- to six-unit increase in satisfac­
tion with personal assistance services in all
three models; this suggests that when pro­
viders and caregivers have a common cul­
tural background, it substantially increases
satisfaction with HCBS.
As a group, health and functional sta­
tus variables were stronger predictors of
satisfaction with personal assistance than
demographics. Overall, having specific
physical and mental health limitations was
associated with a decrease in satisfaction
with services in all three models. In par­
ticular, having a proxy responding to the
survey (possibly an indication of mental
health or cognitive problems), having been
institutionalized in the past, having some
or a great deal of pain in the month preced­
ing the survey, or having bowel/bladder
incontinence were all related to significant
decreases in satisfaction with services.
Surprisingly, persons with greater ADL
impairments had slightly higher satis­
faction with services, and greater IADL
impairments had no effect within the total
sample. However, unmet need for ADL
and IADL assistance was associated with
a substantial reduction in satisfaction with
personal assistance. For each additional
unmet need with one ADL or IADL, there
is about a three-unit decrease in the SPPAS
rating for all three samples.
With the exception of a positive influ­
ence of ADL impairments and a negative
effect of incontinence, other variables pro­
duced a similar effect when the sample
was restricted to young respondents with
physical disabilities. Physical and mental
health problems seemed to have a lesser
impact on satisfaction with services in the
older cohort: only bladder/bowel inconti­
nence and unmet ADL/IADL needs were
negative and significant predictors of sat­
isfaction among the older survey respon­
dents. The number of ADL impairments
produced a very small but statistically
significant positive effect.
Among social and residential character­
istics, social participation was associated
with a significant increase in satisfaction
with personal assistance in the total sample
and among the survey participants age 65
or over, but not among the younger popu­
lation. Living in a group setting such as an
adult foster, assisted living, or group home
was associated with significant reduc­
tion in satisfaction for younger people
with physical disabilities, but not among
older respondents, although the variable
approached significance and had a nega­
tive sign. Younger persons with physical
disabilities who resided in a group setting
rated their satisfaction with personal assis­
tance about six points lower than those
who lived with family or by themselves.
dIscussIon
This study examined satisfaction with
paid personal assistance services among
Medicaid beneficiaries, both younger peo­
ple with physical disabilities and persons
age 65 or over. While not synonymous
with quality, satisfaction is an important
component of quality of care. Although
satisfaction is difficult to measure, doing so
is important because it addresses how the
client experiences HCBS and, therefore, is
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Page 14

key to empowering persons with disabili­
ties. A major assumption of advocates for a
more balanced LTC system is that consum­
ers are more satisfied with HCBS than with
institutional care. Moreover, as policymak­
ers establish systems of HCBS that include
both older clients and younger persons
with physical disabilities, it is important to
know whether the factors that produce a
satisfied older consumer are the same that
produce a satisfied younger person with
physical disabilities, and vice versa.
In general, HCBS beneficiaries were very
satisfied with the services they receive,
which is consistent with the policy prefer­
ence for noninstitutional services. Not only
were overall ratings of service high, but
relatively few persons experienced some
of the negative aspects of care, such as not
being able to resolve problems, not get­
ting along with the paid caregiver, being
ignored or badly treated by the paid care­
giver, or being unable to communicate with
the paid caregiver. Very high percentages
of respondents rated their paid caregivers
as helpful, well-trained, and respectful.
Because of different life expectations,
older people and younger persons with
physical disabilities may have different
determinants of satisfaction. Indeed, this
study of Medicaid HCBS beneficiaries
found that certain factors predict satisfac­
tion for both younger and older persons
with disabilities, whereas other factors are
age-group specific. Overall, young persons
with physical disabilities are less satisfied
with paid care than persons age 65 or over.
All three domains of variables—demograph­
ic, health/functional status, and social/
residential characteristics—appeared to be
important in predicting satisfaction with
paid assistance. While several variables
were significant in our explanatory models
of satisfaction, three key variables are of
particular policy importance: race concor­
dance between clients and paid caregivers,
unmet need for ADL/IADL assistance, and
group residential setting for young persons
with physical disabilities.
First, the consistent positive coefficient
and high significance of the race concor­
dance variable for all age groups in our
study confirms that factors beyond techni­
cal competence contribute to satisfaction
with paid personal assistance, variables
that policymakers have generally ignored.
However, LTC is highly personal, and cli-
ent-provider interactions have an impact
on satisfaction with care. Although racial
intolerance may be a factor, race is likely
a proxy for sharing a common cultural
and linguistic background, which is criti­
cal in something as intensely intimate and
private as giving and receiving personal
care services. To our knowledge, no stud­
ies to date have examined how matching
race between clients and care providers
affects satisfaction with personal care ser­
vices, but a growing body of research finds
that patient-physician race concordance
positively affects the perceived quality of
care and increases satisfaction with health
care services (Saha et al., 1999; LaVeist
and Nuru-Jeter, 2002; LaVeist and Carroll,
2002; Shin and Moon, 2005). In providing
services to persons with disabilities, poli­
cymakers should pay greater attention to
cultural competence of the providers.
Second, unmet need for personal assis­
tance with ADLs and IADLs has a strong
negative impact on satisfaction with care.
Unmet need for ADL and IADL assis­
tance is known to be associated with low
income, multiple ADL impairments, minor­
ity status, and living alone (LaPlante et al.,
2004; Kennedy, 2001). Unmet needs affect
quality of life and lead to negative conse­
quences (Kennedy, 2001; Desai, Lentzner,
and Weeks, 2001; LaPlante et al., 2004;
Komisar, Feder, and Kasper, 2005). For
example, Komisar and colleagues (2005)
found that unmet needs lead to Medicaid
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Page 15

beneficiaries not being able to bathe or
transfer back to bed and having to suffer
wetting and soiling themselves. Analyzing
data from the National Health Interview
Survey, LaPlante and colleagues (2004)
reported that unmet need for assistance
results in a higher incidence of adverse
events, such as discomfort, weight loss,
dehydration, falls, and burns and leads
to dissatisfaction with the help received.
In particular, in this study, persons with
unmet needs were dissatisfied with their
primary caregiver’s availability, amount
of assistance, and the lack of backup care
arrangements. As States face budget con­
straints in their provision of HCBS, poli­
cymakers should recognize that leaving
ADL and IADL needs unmet will reduce
consumer satisfaction as well as increase
the risk of adverse events.
Finally, the finding that younger people
with physical disabilities in group living
arrangements are less satisfied with their
personal assistance services should be a
caution to policymakers and others who
are promoting these services. This result
parallels the findings of others regarding
the younger population with developmen­
tal disabilities. However, it appears that
persons age 65 or over in group home/
assisted living settings are not less sat­
isfied with personal assistance services
compared with those receiving them in
independent living settings. Speculatively,
younger people with physical disabilities
may find the organized setting of a resi­
dential care facility constraining and too
limiting of their freedom of activity. This
finding suggests that some of the enthu­
siasm of policymakers for assisted living
and other group residential settings needs
to be viewed with caution for the younger
population with physical disabilities.
Other multivariate findings are also note­
worthy. Prior history of being institutional­
ized and having some or a great deal of
pain in the month preceding the survey
greatly diminished satisfaction for young
persons with physical disabilities, but did
not affect satisfaction with services for
persons age 65 or over. Older people, who
commonly suffer from arthritis and other
chronic disabling conditions, may be more
accepting of pain and consider it as a part
of the aging process.
Although this study adds to the limited
literature on Medicaid HCBS, it does have
some limitations. First, the study is limited
to Medicaid beneficiaries in six States, and
its results cannot necessarily be general­
ized to the national population of Medicaid
beneficiaries receiving these services.
However, the study includes States with a
range of HCBS systems and a substantial
sample of respondents. Second, satisfac­
tion is an important indicator of quality of
HCBS; however, because it is subjective, it
is susceptible to cultural norms and expec­
tations, making it difficult to measure reli­
ably. Measuring satisfaction with home-
based care is prone to response bias, as
well as cohort effect. As unpaid caregivers
serving as proxies constitute a large part of
the survey respondent pool, we assumed
that unpaid caregiver proxies are unbiased
when responding to satisfaction questions
on behalf of the survey respondents.
Finally, while the literature indicates
that Medicaid beneficiaries receiving their
services via consumer directed programs
where they can also hire family mem­
bers or friends tend to be more satisfied
than those receiving them through tradi­
tional agency-based care, we were unable
to test the effect of consumer direction
across all six States as the survey indica­
tor for consumer direction turned out to
be unreliable. The problems with iden­
tifying consumer direction also affected
our ability to analyze the family affiliation
of paid caregivers. For example, signifi­
cant percentages of respondents in States
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83