Disability and Health Journal 2 (2009) 188e195

www.disabilityandhealthjnl.com

Influence of a Consumer-Directed Personal Assistance ServicesProgram on the lives of persons with mobility impairments

David B. Gray, Ph.D.,* Jessica L. Dashner, O.T.D., O.T.R./L., Kerri A. Morgan, M.S.O.T.,O.T.R./L., Melissa Lyles, M.S.O.T., O.T.R./L., Michael D. Scheller, P.T.A.,

Carrie L. Morris, B.A., Holly H. Hollingsworth, Ph.D.Program in Occupational Therapy, Washington University School of Medicine, St. Louis, MO 63108, USA

Abstract

Objective: To examine the effects of a consumer-directed personal assistance services (CDPAS) program on the lives of persons withdisabilities.

Methods: Thirteen individuals receiving paid agency-directed PAS services before enrollment in a CDPAS program (Agency Group)and 40 individuals receiving only unpaid PAS before enrollment (Informal Group) participated in this prospective study. In-home interviewswere conducted just prior to CDPAS enrollment and again 6 months after CDPAS enrollment.

Results: Overall choice and satisfaction with PAS improved significantly for both groups after CDPAS initiation ( p ! .05). Total PAShours increased significantly for the Informal Group ( p ! .01) but not the Agency Group. The Informal Group used relatives to provide themajority of its CDPAS hours, while the Agency Group chose to use nonrelatives and nonfriends to provide the majority of its CDPAS hours.Few significant changes in health status were observed for either group after the CDPAS intervention, although most changes were in thepositive direction. The CDPAS program did not appear to have a large effect on individuals’ personal and community participation, butparticipants reported a relatively high quality of participation at both time points.

Conclusion: This study supports other findings that consumers prefer CDPAS to agency-directed care and provides new evidence thatthis preference cannot be explained by an increase in PAS hours that often accompanies enrollment in a CPDAS program. Although CDPASappear to have subtle positive effects on consumer health and participation, ways in which CDPAS can maximize health status and partic-ipation quality among consumers should be explored. � 2009 Elsevier Inc. All rights reserved.

Keywords: Formal personal assistance services; Informal personal assistance services; Impairment; Health status; Personal care; Social participation; Satis-

faction; Choice

Personal assistance services (PAS) enable persons withdisabilities to participate in activities that are difficult orimpossible for them to do alone [1,2]. Often, PAS arerequired for persons with a disability to perform activitiesof daily living (ADLs), which include dressing, bathing,toileting, grooming, transferring, feeding, and meal prepa-ration [1,3-5]. In addition to assistance in basic personalcare activities, PAS may include help with a variety ofactivities categorized as instrumental activities of daily

Financial disclosure: The authors have no conflicts of interest to

declare. Support for this project came from the National Institute of

Disability Rehabilitation and Research in collaboration with the University

of Kansas Research and Training Centre on Full Participation in Indepen-

dent Living (Grant H133B000500).

* Corresponding author: Campus Box 8505, 4444 Forest Park Avenue.

Fax: (314) 286-0631.

E-mail address: graydb@wusm.wustl.edu (D.B. Gray).

1936-6574/09/$ e see front matter � 2009 Elsevier Inc. All rights reserved.

doi:10.1016/j.dhjo.2009.05.002

living (IADLs), including exercising, working inside thehome, and leaving the home.

Approximately 13.2 million noninstitutionalized adultsreceive an average of 31.4 hours of PAS per week [6],although the number of PAS hours an individual receivesvaries significantly with age, employment status, and thenumber of ADLs and IADLs with which a person requiresassistance. For most individuals who receive PAS, themajority of help they receive is provided by family and/or friends and is unpaid; this type of PAS is often referredto as Informal PAS [7,8]. Formal (paid) PAS comprise anestimated 13.4% of PAS hours received by persons withdisabilities [6]. Formal PAS are provided by home healthcare agencies, government employees, centers for indepen-dent living (CILs), or providers hired by the individual inneed of help [1].

Most persons who use formal PAS obtain them via homehealth care agencies available under many state Medicaid

189D.B. Gray et al. / Disability and Health Journal 2 (2009) 188e195

programs [5]. Under the agency-directed model PAS,consumers have little choice in hiring, firing, or assertingcontrol over the person sent by the agency [9,10]. Incontrast, the more recent consumer-directed PAS (CDPAS)model allows consumers to manage the recruitment, hiring,and firing of a personal attendant; how and when personalassistance is provided; and the pay of the person or personsfrom whom they receive PAS [2,11,12].

There is substantial evidence that persons with disabil-ities who use formal PAS prefer CDPAS over agency-directed PAS [13-19]. This preference is most commonlymeasured by consumers’ satisfaction with PAS, but thereis additional evidence that CDPAS are associated withincreased life satisfaction among consumers [20]. Moststudies comparing agency-directed PAS to CDPAS havebeen cross-sectional, precluding within-individual compar-isons. Clark and colleagues conducted a rare longitudinalstudy in which changes in participants’ satisfaction weremeasured after switching from agency-directed PAS toCPDAS and found that satisfaction with PAS increasedsignificantly [15]. This increase, however, was accompa-nied by an increase in PAS hours [15]. Whether the numberof PAS hours received in CDPAS programs confoundclaims that CDPAS are preferable to agency-directed PASremains unknown.

The relationship between the consumer and the PASprovider may also contribute to consumers’ PAS evalua-tions. Most CDPAS programs allow consumers to hireand pay relatives and friends as attendants, and there iscross-sectional evidence that persons who hire relativesand friends are more satisfied with PAS than are thosewho hire strangers [21]. The results of Clark et al.’s study[15], however, suggest persons familiar with agency-directed PAS before switching to a CDPAS program donot choose to hire relatives as their primary attendants.Furthermore, whom persons who rely heavily on InformalPAS would select as attendants when enrolled in a CDPASprogram has not been reported. A more thorough knowl-edge of consumers’ preferences for CDPAS providers isneeded to better understand how the consumereproviderrelationship affects the quality of CDPAS.

Proponents of agency-directed PAS have argued thatstate-funded CDPAS programs are associated withincreased liability [1]. They assert that because CDPASproviders are not required to have formal training or certi-fications, consumers may incur increased risks to theirhealth. Some studies have weakened this assertion by re-porting a positive relationship between CDPAS andconsumer health, including fewer hospitalizations andbetter self-perception of health status [19,20], but othershave reported no effect [15,16,18]. In their 2004 reviewof the current state of PAS, Hagglund and colleagues as-serted that more research is needed to clarify the relation-ship between CDPAS and health outcomes [22].

The relationship between CDPAS and participation isalso poorly understood. Although evidence indicates

CDPAS consumers face fewer social barriers than thosewho receive agency-directed PAS [20] and that they aremore satisfied living in the community [17], the effect ofCDPAS on personal and community participation remainsunknown. One possible explanation for the lack of datamay be that participation is a broad concept that has manycomponents and measurement tools [23-26]. Gray andcolleagues have asserted that participation can be definedas engagement of persons in their lived environments[25]. Using this perspective, activities in both the homeand community environments are contributors toconsumers’ participation. Choice and satisfaction areimportant evaluative factors for persons when doing activ-ities. Understanding how CDPAS affect consumers’ choiceand satisfaction for personal care and other life activities isimportant for maximizing their ability to participate fully inhome and community life.

Objectives of the Research

The primary objective of this study was to examinechanges in outcomes in persons with disabilities beforeand 6 months after their enrollment in a CDPAS program.The following variables were hypothesized to be affectedby the CDPAS intervention: overall choice and satisfaction,with PAS; overall importance of PAS; PAS hours andproviders; health indicators, and participation in personalcare and community activities.

Method

Description of CDPAS Program

The Home and Community-Based Service PhysicalDisability Medicaid Waiver program within the State ofMissouri Department of Vocational Rehabilitation wasmanaged by three CILs that provided CDPAS to individualsin financial need and who had been determined to be inneed of personal assistance. The CDPAS program requiredthat individuals with disabilities find and hire attendantsand schedule times for attendants to work. Relatives andfriends who passed a background check were allowed tobe hired as attendants, unless they were the spouse of theindividual or were under the age of 18. Consumers werenot allowed to hire attendants from home-health agenciesbut were allowed to hire other persons they found indepen-dently who were not affiliated with an agency.

Participants

Inclusion criteria required that participants hada mobility impairment, were at least 18 years of age, wereclients of one of the three CILs participating in the Homeand Community-Based Service Physical Disability Waiverprogram and had been approved for enrollment in a CDPAS

190 D.B. Gray et al. / Disability and Health Journal 2 (2009) 188e195

program. Persons with a serious medical condition ormental illness were excluded from participation. To isolatethe effects of the CPDAS program, participants who re-ported receiving paid PAS from sources in addition to theCDPAS program at the 6-month follow-up interview wereexcluded. All study participants reported receiving someinformal PAS at the time of their enrollment in the CDPASprogram. Participants who reported receiving additionalagency-directed PAS at the time of their enrollment wereplaced in an Agency Group. Participants who reportedreceiving only unpaid PAS were placed in an InformalGroup.

Procedures

A repeated-measures within-group design was used toassess changes in the Informal and Agency groups before theirenrollment in a CDPAS program (‘‘preintervention’’) and at 6months after receiving CDPAS (‘‘postintervention’’).

Participants interested in receiving CDPAS enrolled inthe CDPAS program at one of three local CILs. Indepen-dent living specialists then visited participants in theirhomes to explain the CDPAS program in greater detail.At this time, participants were told about the current studyand asked if they would like to participate. The independentliving specialist relayed the names of interested participantsto the study’s research staff. These participants were con-tacted by a member of the research staff to explain thestudy procedures and to schedule an in-home interviewbefore the start of the CDPAS intervention. Due to partici-pants’ availability, a small number of preinterventioninterviews were conducted after participants had begunreceiving CDPAS. These data were retained as the inter-views for these participations were conducted within 1week of the CDPAS initiation and participants were in-structed to respond to questions in terms of their statusbefore CDPAS initiation. During this preintervention inter-view, participants were administered surveys. Approxi-mately 6 months after they had begun receiving CDPAS,participants were administered the surveys again duringa postintervention interview. Interviews lasted between 1and 2 hours. Respondents signed an informed consentbefore completing surveys and were remunerated $25 atpreintervention and $25 at postintervention. The Washing-ton University Human Subjects Committee approved allprocedures.

Outcome Variables

Overall Choice, Satisfaction, and Importance of PASParticipants responded to survey questions about their

level of choice and satisfaction with their PAS, as well asthe level of importance of PAS to them. Responses to eachof these questions were scored on 4-point Likert scales andconsisted of the following: ‘‘no choice,’’ ‘‘little choice,’’‘‘some choice,’’ and ‘‘a lot of choice;’’ ‘‘very dissatisfied,’’

‘‘dissatisfied,’’ ‘‘satisfied,’’ and ‘‘very satisfied;’’ and ‘‘veryunimportant,’’ ‘‘unimportant,’’ ‘‘important,’’ and ‘‘veryimportant.’’

PAS HoursParticipants responded to a series of survey questions

about PAS hours, including how many paid and unpaid hoursthey received per week from each of the following PASproviders: ‘‘relatives,’’ ‘‘friends,’’ ‘‘persons from an agency,’’and ‘‘people I hire.’’ Participants selected their answers fromthe following response choices: ‘‘0,’’ ‘‘less than 5,’’ ‘‘5e10,’’‘‘11e20,’’ ‘‘21e30,’’ and ‘‘more than 30.’’

Health StatusHealth status was measured using questions about

secondary conditions and about health-related quality of life.Participants indicated using a yes/no response if they werecurrently experiencing any of the following 17 secondaryconditions: bladder incontinence, bowel incontinence, circu-latory problems, contractures, depression, fatigue, finger/toenail infections, high blood pressure, osteoporosis, pain,phlebitis, skin problems, spasticity, stomach problems, upperrespiratory infections, urinary tract infection, and weightproblems. Participants responded to health-related quality-of-life questions adapted from the 1998 Missouri BehavioralRisk Factor Surveillance System (BRFSS) [27] question-naire by indicating for how many of the past 30 days: (1) theirpain made performing their usual activities difficult, (2) theyfelt sad, blue, or depressed, (3) they felt worried, tense, oranxious, (4) they felt they did not get enough rest or sleep,and (5) they felt very healthy and full of energy.

Personal and Community ParticipationThe Participation of People with Mobility Impairments

and Limitations Survey (PARTS/M) was used to measureparticipation in seven personal care and 10 other life activ-ities. The PARTS/M includes activities listed in the activity/participation component of the International Classificationof Functioning, Disability, and Health and has adequateinternal consistency and reliability [25]. Participantsanswered PARTS/M questions about their choice and satis-faction with their participation in the following personalcare activities: bathing, bladder care, bowel care, dressing,grooming, meal preparation, and eating meals. In addition,they indicated their choice and satisfaction with thefollowing other life activities: communication, exercisingat home, leaving home, leisure activities, managing money,moving around in the home, parenting, religious activities,socializing, and working inside home. Responses werescored on 4-point Likert scales identical to the overallsatisfaction choice PAS scales.

Data Analysis

Data analyses were conducted using SPSS v. 16.0 forWindows. Demographic analyses were conducted using

191D.B. Gray et al. / Disability and Health Journal 2 (2009) 188e195

c2 tests and independent t tests when appropriate. Within-group preepost changes were calculated using a Wilcoxontest. Preepost changes in categorical variables wereassessed using McNemar test of dependent proportions. Ap value smaller than .05 was required for statisticalsignificance.

Results

Sample Characteristics

Of the 133 individuals who satisfied the study’s inclu-sion criteria, 34 had incomplete or unusable data. An addi-tional 42 persons were lost to follow-up and 4 withdrewfrom the study. Demographics of these 46 individualsexcluded from analyses were compared with the demo-graphics of the 53 participants included in analyses, andno significant differences were found. For example, yearsof age ranged from 19 to 83 (mean, 54.4; Table 1) for theparticipants included in the analyses and from 18 to 81(mean, 55.1) for those who withdrew or were lost to

Table 1

Demographics of Study Participants

Informal

(n 5 40)

Agency

(n 5 13)

Test age

Mean (SD) 53.4 (15.9) 57.3 (11.0)

Range 19e83 35e78

Gender

Female 80.0 84.6

Race*

White 50.0 15.4

Black 50.0 84.6

Hispanic origin

Yes 0.0 0.0

Marital status

Married/member of unmarried couple 7.5 7.7

Divorced/widowed/separated/never

been married

92.5 92.3

Highest grade completion

Grade 1e8 17.9 15.4

Some high school/

high school graduate

38.5 46.2

Some college/college graduate 43.6 38.5

Annual household income

!$10,000 67.5 61.5

$10,000 to !$20,000 25.0 38.5

$20,000 or more 7.5 0.0

Employment status

Employed 5.0 7.7

Impairment in addition to mobility

Visual 42.5 61.5

Hearing 20.0 15.4

Cognitive 25.0 46.2

Mental health 20.0 23.1

Note. All data reported as percentages unless otherwise indicated.

Group differences were assessed via independent t tests for age variable;

c2 tests were used for all categorical variables.

* Pearson c2 5 4.84; p ! .05.

follow-up. Females composed 81.1% of the study sampleand 71.7% of excluded participants.

In addition to being predominantly female, only 7.5%of the study sample was married. Over half had at leasta high school level of education. Most of the participants(88.6%) reported household income levels of less than$15,000 per year, and almost all (94.3%) were unem-ployed. The Agency Group had significantly moreAfrican Americans than the Informal Group (c2 5 4.84;p 5 .03); there were no other significant demographicdifferences between the Informal and Agency groups(Table 1).

Overall Choice, Satisfaction, and Importance of PAS

Likert-scale responses to overall choice, satisfaction,and importance questions ranged from 1 to 4, with higherscores indicating more choice, satisfaction, or importance.Choice and satisfaction with PAS increased significantlyafter CDPAS initiation for both groups from preinterven-tion to postintervention (Table 2). For the Informal Group,overall choice with PAS improved more than a half-scalepoint from 3.0 to 3.6 (z 5 e2.83, p ! .01), and overallsatisfaction improved from 3.3 to 3.7 (z 5 e2.30,p 5 .021). For the Agency Group, choice and satisfactionboth increased almost full scale points, from 2.7 to 3.6

Table 2

Changes in PAS Quality, Hours, and Providers From Preintervention to

Postintervention

Informal Group

(n 5 40)

Agency Group

(n 5 13)

Preintervention Change Preintervention Change

PAS quality

Choicea 3.0 0.7** 2.7 0.9*

Satisfactiona 3.3 0.4* 2.6 0.8*

Importance 4.0 0.0 3.9 0.1

PAS hours

Total 19.6 15.1 23.3 3.7

Paid 0.0 20.0** 11.8 8.1*

Unpaid 19.6 e4.9* 11.5 e4.3

Relatives

Paid 0.0 12.0** 0.0 7.4*

Unpaid 17.3 e5.4* 10.5 e4.4

Friends

Paid 0.0 3.1* 0.4 0.0

Unpaid 2.3 e0.8 0.5 e0.3

People I hire

Paid 0.0 4.8** 0.0 10.5*

Unpaid 0.0 1.3* 0.0 0.9

Agency

Paid 0.0 0.0 11.5 e9.8**

Unpaid 0.0 0.0 0.5 e0.5

PAS, personal assistance services; Change, change in mean scores from

preintervention to postintervention.

Within-group preepost changes assessed using a Wilcoxon test.a n 5 38 for Informal Group.

* p ! .05;

** p ! .01.

Table 3

Percentage of Participants Experiencing Secondary Conditions at Prein-

tervention and Postintervention

Informal Group

(n 5 40)

Agency Group

(n 5 13)

192 D.B. Gray et al. / Disability and Health Journal 2 (2009) 188e195

(z 5 e2.59, p 5 .01) and from 2.6 to 3.5 (z 5 e2.48,p 5 .013), respectively. CDPAS appeared to have no effecton overall importance of PAS, for which the mean ratingwas very close to the maximum scale point of 4.0 (veryimportant) for both groups at each time point.

Preintervention Change Preintervention Change

Secondary conditions

Bladder incontinence 57.5 2.5 30.8 7.7

Bowel incontinence 22.5 e5.0 7.7 23.1

Circulatory problems 55.0 e2.5 61.5 0.0

Contractures 32.5 e5.0 53.8 e7.7

Depression 57.5 e7.5 46.2 0.0

Fatigue 70.0 e2.5 84.6 0.0

Finger/toenail

infections

5.0 12.5 53.8 7.7

High blood pressure 60.0 2.5 61.5 0.0

Osteoporosis 32.5 e5.0 30.8 0.0

Pain 90.0 e5.0 84.6 7.7

Phlebitis 17.5 e2.5 23.1 7.7

Skin problems 22.5 15.0 53.8 0.0

Spasticity 35.0 e2.5 15.4 15.4

Stomach problems 47.5 7.5 38.5 0.0

Upper respiratory

infections

52.5 e5.0 46.2 e7.7

Urinary tract

infections

27.5 2.5 23.1 e7.7

Weight problems 65.0 e2.5 53.8 0.0

Quality-of-life factors

Depression 11.1 e1.5 13.1 e4.6**

Healthy 10.5 e0.1 6.8 3.5

Pain 17.4 e1.8 17.9 0.5

Unrested 15.8 e3.1 14.9 0.2

Worrieda 14.9 e3.6* 16.5 e4.0

Change, change from preintervention to postintervention. Secondary

condition numbers reported as percentage of participants who endorsed

the condition. Quality-of-life factors reported as days in past month during

which participants endorsed the condition. Preepost changes for

secondary conditions assessed using a McNemar test; preepost changes

for quality-of-life factors assessed using a Wilcoxon test.a n 5 38 for Informal Group.

* p ! .05;

** p ! .01.

PAS Hours and Providers

To estimate PAS hours, the lower bound of each intervalwas used (e.g., a response of ‘‘5e10 hours/week’’ was esti-mated to be 5 hours). The lower bound was chosen becauseneither midpoint nor upper-bound computations could beconducted for the response ‘‘more than 30.’’ This transfor-mation produced values equal to or less than the actualnumber of PAS hours.

At preintervention, the Agency Group reported receiving23.3 hours of PAS per week. Of these hours, 11.5 wereunpaid and 11.9 were paid (Table 2). For the AgencyGroup, unpaid PAS were provided primarily by relatives,and almost all paid PAS were provided by agencypersonnel. The Informal Group reported receiving 19.6unpaid hours per week at preintervention, and almost allof these hours were provided by relatives.

Both groups were approved for approximately 20 hoursof paid PAS under the CDPAS program (Table 2). Totalunpaid PAS hours decreased and total paid PAS hoursincreased for both participant groups after the CDPASintervention. Total PAS hours increased significantly from19.6 hours to 34.6 hours for the Informal Group(z 5 e4.27, p ! .01); the Agency Group’s increased from23.4 hours to 27.1 hours from preintervention to postinter-vention was not significant. Relatives continued to providethe majority of the Informal Group’s PAS hours at postin-tervention (12.0 hours of paid PAS and 11.9 hours ofunpaid PAS). Although relatives provided a significantamount of unpaid PAS to the Agency Group at preinterven-tion, members of the Agency Group chose to receive mostof their paid PAS from ‘‘people I hire’’ at postintervention(10.5 hours). Relatives continued to supplement this helpby providing 7.4 hours of paid PAS and 6.1 hours of unpaidPAS at postintervention.

Health

Secondary ConditionsOf the 17 secondary conditions surveyed, the Informal

Group reported experiencing a mean of 7.5 conditions atpreintervention; the Agency Group reported experiencinga mean of 7.7 secondary conditions (Table 3).

Neither group experienced significant changes in thenumber of participants who reported experiencing eachsecondary condition from preintervention to postinterven-tion. Pain was the most commonly reported secondarycondition for the Informal Group and for the AgencyGroup: More than 80% of each group reported experi-encing pain both time points.

Quality of LifeParticipants’ responses to adapted BRFSS questions are

listed in Table 3. Of the questions asked, pain was reportedto affect participants most frequently at preintervention; theInformal Group reported feeling pain for 17.4 days of thepast month, and the Agency Group reported feeling painfor 17.9 days of the past month. Feeling very healthy/fullof energy was the least frequently reported condition forboth groups; the Informal Group reported feeling veryhealthy/full of energy for 10.5 days of the past month andthe Agency Group reported feeling very healthy/full ofenergy for 6.8 days of the past month. Both groups reportedfeeling worried, unrested, and depressed for more than 10of the past 30 days.

The number of days the Informal Group felt worried/tense/anxious decreased from 14.8 at preintervention to11.2 at postintervention (z 5 e1.98, p 5 .047). The AgencyGroup reported 4.6 fewer days of depression at postinter-vention (from 13.1 to 8.5; z 5 e2.67, p ! .01).

193D.B. Gray et al. / Disability and Health Journal 2 (2009) 188e195

Participation

All participants answered quality-of-participation ques-tions for personal care activities because they were consideredessential for daily care. For questions about other life activi-ties, only those participants who responded they did theactivity answered the participation questions for that activity.

Likert-scale responses to choice and satisfaction ques-tions ranged from 1 to 4, with higher scores indicating morechoice or satisfaction. Both groups reported being relativelysatisfied and having at least some choice for almost allactivities at preintervention (Table 4). Of the personal careactivities surveyed, both groups reported having the leastamount of choice with meal preparation (Informal Groupmean, 2.9; Agency Group mean, 2.3) and the greatestamount of choice with dressing (Informal Group mean,3.6; Agency Group mean, 2.8). Of the other life activitiessurveyed, both groups reported having the least amountof choice with working inside the home (Informal Groupmean, 2.7; Agency Group mean, 1.8). The Informal Groupreported having the most choice with communication(mean, 3.4); the Agency Group reported having the mostchoice with parenting (mean, 3.7).

In general, satisfaction scores were lower than choicescores (Table 4). Of the personal care activities, theInformal Group reported being least satisfied with mealpreparation (mean, 2.9) and most satisfied with eatingmeals (mean, 3.3) at preintervention, while the AgencyGroup reported being least satisfied with bathing (mean,2.2) and most satisfied with bladder care (mean, 3.0). Ofthe other life activities surveyed, the both groups reportedbeing least satisfied with working inside the home(Informal Group mean, 2.4; Agency Group mean, 2.1).The Informal Group reported being most satisfied withcommunication (mean, 3.4); the Agency Group reportedbeing most satisfied with parenting (mean, 3.2).

Most activities showed improved choice and satisfactionat postintervention (Table 4). Few of these changes,however, were significant. Choice scores improved for theInformal Group for eating meals (z 5�2.01, p 5 .044).In addition, the Agency Group showed significant improve-ments in choice for exercising in the home (z 5�2.27,p 5 .012) and for leaving the home (z 5�2.57, p!.01).Satisfaction improved significantly for money managementfor the Informal Group (z 5�2.17, p 5 .03) and theAgency Group showed a significant improvement in satis-faction for bathing and preparing meals (z 5�2.55,p 5 .011 and z 5�2.16, p 5 .031, respectively). No othersignificant changes were found.

Discussion

In this prospective study, we measured changes in partic-ipants’ overall choice and satisfaction with PAS, PAS hoursand providers, health status, and participation after enroll-ment in a CDPAS program.

When participants were enrolled in the CDPAS program,their overall choice and satisfaction with PAS improvedsignificantly, a finding consistent with the literature [13-18]. Because the total number of PAS hours increasedsignificantly for the Informal Group, improved choice andsatisfaction with PAS is not unexpected. The AgencyGroup’s improved choice and satisfaction under theCDPAS program, however, was not accompanied bya significant increase in total PAS hours, suggesting thatconsumer-directed services are preferable to consumersregardless of the number of PAS hours provided.

Agency Group participants reported receiving23.3 hours of PAS at preintervention, a number similar tothe 22 hours participants in Clark et al.’s study reportedthey received under agency-directed care [15]. InformalGroup participants reported receiving 19.6 hours of PASat preintervention. The 15-hour increase the InformalGroup experienced from preintervention to postinterventionsuggests that their preintervention hours may have beeninsufficient to meet their PAS needs, a claim others havesupported [28].

To our knowledge, this is the first study that has examinedwhom PAS consumers choose as providers when they switchfrom Informal PAS to CDPAS. We found that members ofthe Informal Group used relatives to provide the majorityof their CDPAS hours at postintervention. The InformalGroup received almost all of its preintervention PAS fromrelatives, so the continued use of relatives is not surprising.At postintervention, Agency Group participants relied onhiring non-relatives and non-friends to provide the majorityof their CDPAS. These results are in accordance with Clarkand colleagues’ finding that persons who switched fromagency-directed PAS to CDPAS selected non relatives astheir personal attendants [15], although members of theAgency Group also reported hiring relatives for severalhours per week. One explanation for why the Agency Groupchose to hire independent providers may be a lack of a suffi-cient number family and friends who were willing to providePAS. Unfortunately, our surveys did not include detailedquestions about social networks or living situations. Furtherexamination of reasons the Agency Group was less likely touse relatives and friends as CDPAS providers at postinter-vention is needed to better understand the characteristicsthat consumers desire in their personal attendants.

We measured the influence of CDPAS on participants’health in two ways. First, the number of reported secondaryconditions reported before and after enrollment in theCDPAS program was examined. Second, preepost changesin several health-related quality-of-life indicators were as-sessed. The CDPAS program appeared to have little effecton either group’s health status, although the Agency Groupreported feeling depressed less often after the CDPAS inter-vention. Although there were not numerous significantimprovements, most changes were in the positive direction,and in accordance with others’ findings [15,16,18], wefound that CDPAS program did not negatively affect

Table 4

Changes From Preintervention to Postintervention in Choice and Satisfaction With Personal Care Activities and Other Life Activities

Choice Satisfaction

Informal Group Agency Group Informal Group Agency Group

n Pre Change n Pre Change n Pre Change n Pre Change

Personal care activities

Bathing 40 3.3 0.0 13 2.4 0.8 40 3.2 e0.1 13 2.2 1.2*

Bladder 40 3.4 e0.1 13 2.5 0.0 40 3.1 0.1 13 3.0 e0.2

Bowel 39 3.3 0.2 13 2.8 0.4 39 3.0 0.1 13 2.7 0.2

Dressing 49 3.6 e0.1 12 2.8 0.2 40 3.2 0.0 13 2.8 0.2

Eating 39 3.5 0.3* 13 2.5 0.8 39 3.3 0.1 13 2.6 0.3

Grooming 40 3.2 0.3 13 2.6 0.6 40 3.0 0.2 13 2.6 0.2

Meal preparation 40 2.9 0.2 13 2.3 0.4 40 2.9 0.2 13 2.3 0.8*

Other life activities

Communication 39 3.4 e0.1 13 3.0 0.2 40 3.4 e0.1 13 2.9 e0.1

Exercising at home 24 3.0 e0.3 11 2.1 0.7* 24 2.7 e0.1 11 2.2 0.2

Leaving home 34 3.1 0.3 13 2.4 1.0* 34 2.7 e0.2 13 2.2 0.6

Leisure activities 40 3.3 e0.2 12 2.5 0.3 40 2.8 e0.2 12 2.2 0.6

Managing money 33 3.3 0.0 9 3.1 0.2 33 3.2 e0.5* 10 2.9 e0.1

Moving in home 39 3.1 0.2 13 2.9 0.4 40 2.9 0.0 10 2.4 0.5

Parenting 17 3.4 e0.4 6 3.7 e0.8 17 3.2 e0.3 13 3.2 0.2

Religious activity 20 3.2 0.1 9 2.8 0.2 20 3.1 0.1 6 2.4 0.0

Socializing 40 3.1 0.3 12 2.8 0.4 40 2.9 0.1 9 2.8 e0.1

Working in home 20 2.7 0.3 6 1.8 0.2 21 2.4 0.4 12 2.2 0.2

Change, change in mean scores from preintervention to postintervention. Within-group preepost changes assessed using a Wilcoxon test.

* p ! .05.

194 D.B. Gray et al. / Disability and Health Journal 2 (2009) 188e195

participants’ health status. Consumer training programshave been identified as a possible conduit to improvingCDPAS consumers’ knowledge about health conditionswhen directing their PAS [22]; developing and assessingthese programs’ efficacy are important directions of futureCDPAS research.

The influence of CDPAS on participation in personal careand other life activities has been suggested as an appropriatefuture step for examinations of CDPAS programs [22]. Wemeasured participants’ choice and satisfaction levels whendoing 17 activities at preintervention and postinterventionand found relatively few significant changes. However, theAgency Group reported significantly improved choice whenexercising and leaving home, two activities important forcommunity participation. Interestingly, both groups reportedhaving at least some choice and satisfaction in personal careand other life activities. In general, choice scores were higherthan satisfaction scores. Working inside the home receivedrelatively low choice and satisfaction scores from bothgroups at both time points, indicating that PAS provisionfor this activity may warrant further study. The CDPASprogram in this study did not appear to have a large effecton participants’ participation; exploring ways in whichCDPAS can have a greater impact on consumers’ personaland community engagement is an important direction forfuture CDPAS research.

Limitations

Interpretations of the findings of this study are limited byseveral factors. As frequently reported in community-basedstudies, many participants in this study were unable to

complete a second interview. The resulting small sample sizemakes generalizations of findings beyond our sample difficult.Our study was not a randomized control trial, making it diffi-cult to assert causal relationships with certainty. Finally, the‘‘yes/no’’ and 4- and 5-point Likert scale response optionsin our surveys may not have been sensitive enough to detectsubtle but significant changes in participation.

Directions for Future Research

Future directions of CDPAS research should include anexamination of how PAS can improve community partici-pation of people with disabilities. To provide a holistic viewof PAS provision, the social networks of PAS consumersand their providers requires additional study. Finally, theeffects of educating the consumers of the CDPAS and theirpaid and unpaid personal attendants should be addressed.

Acknowledgments

The authors thank Denise Curl for managing the datacollected and the Washington University School of Medi-cine Program in Occupational Therapy graduate studentswho assisted with data collection and data entry.

References

[1] Doty P, Kasper J, Litvak S. Consumer-directed models of personal

care: lessons from Medicaid. Milbank Q. 1996;74:377-409.

[2] Litvak S, Zukas H, Heumann JE. Attending to America: Personal

Assistance for Independent Living. A Survey of Attendant Services

in the United States for People of All Ages With Disabilities. Berke-

ley, CA: World Institute on Disability; 1987.

195D.B. Gray et al. / Disability and Health Journal 2 (2009) 188e195

[3] Kahn P. Maintaining personal care attendant services. Am Rehabil.1980;Nov-Dec;24-26.

[4] Litvak S. Examples of programs designed to maximize recipient

management of their own service. In Personal Assistance Services: A

Guide to Policy and Action. Oakland, CA: World Institute on

Disability; 1991.

[5] Litvak S. Personal assistance services policy: where we have been

and where we are going. Am Rehabil. 1998;24:9-14.

[6] LaPlante MP, Harrington C, Kang TE. Estimating paid and unpaid

hours of personal assistance services in activities of daily living

provided to adults living at home. Health Serv Res. 2002;37:397-415.

[7] Miller B, Campbell RT, Davis L, Furner S, Giachello A, Prohaska T,

et al. Minority use of community long-term care services: a compar-

ative analysis. J Gerontol Ser B Psychol Sci Soc Sci. 1996;51:

S70-S81.

[8] Wolf DA, Soldo B. Family structure and caregiving portfolios.

Boston: Presented at the annual meetings of the Gerontological

Society of America; 2001.

[9] Batavia AI. Health care, personal assistance, and assistive tech-

nology: are in-kind benefits key to independence or dependence for

people with disabilities?. In: Mashaw JL, ed. Disability, Cash Benefits

and Work. Kalamazoo, MI: W.E. Upjohn Institute for Employment

Research; 1996:389-412.

[10] Schopp LH, Clark MJ, Hagglund KJ, Sherman AK, Stout BJ,

Gray DB, et al. Life activities among individuals with spinal cord

injury living in the community: perceived choice and perceived

barriers. Rehabil Psychol. 2007;52:82-88.

[11] Batavia AI. Prospects for a national personal assistance services

program: enhancing choice for people with disabilities. Am Rehabil.

1998;24:2-8.

[12] Scherzer T, Wong A, Newcomer R. Fiscal management services in

consumer-directed programs. Home Health Care Serv Q. 2007;27:

29-42.

[13] Beatty PW, Richmond GW, Tepper S, DeJong G. Personal assistance

for people with physical disabilities: consumer-direction and satisfac-

tion with services. Arch Phys Med Rehabil. 1998;79:674-677.

[14] Benjamin AE, Matthias R, Franke TM. Comparing consumer-

directed and agency models for providing supportive services at

home. Health Serv Res. 2000;35:351-366.

[15] Clark MJ, Hagglund KJ, Sherman AK. A longitudinal comparison of

consumer-directed and agency-directed personal assistance service

programmes among persons with disabilities. Disabil Rehabil.2008;30:689-695.

[16] Foster L, Brown R, Phillips B, Schore J, Carlson BL. Improving the

quality of Medicaid personal assistance through consumer direction.

Health Aff. 2003;26:162-175.

[17] Hagglund K, Clark M, Farmer J, Sherman A. A comparison of

consumer-directed and agency-directed personal assistance services

programmes. Disabil Rehabil. 2004;26:518-527.

[18] Kim KM, White GW, Fox MH. Comparing outcomes of persons

choosing consumer-directed or agency directed personal assistance

services. J Rehabil. 2006;72:32-43.

[19] Prince JM, Manley MS, Whiteneck GG. Self-managed versus agency

provided personal assistance care for individuals with high level

tetraplegia. Arch Phys Med Rehabil. 1995;76:919-923.

[20] Chase BW, Cornille TA, English RW. Life satisfaction among

persons with spinal cord injuries. J Rehabil. 2000;66:14-20.

[21] Matthias R, Benjamin A. Paying friends, family members or

strangers to be home-based personal assistants. J Disabil Pol Stud.

2008;18:205-218.

[22] Hagglund K, Clark M, Mokelke E, Stout B. The current state of

personal assistance services: implications for policy and future

research. Neurorehabilitation. 2004;19:115-120.

[23] Dijkers MPJM, Whiteneck G, El-Jaroundi R. Measures of social

outcomes in disability research. Arch Phys Med Rehabil. 2000;81:

S63-S80.

[24] Fougeyrollas P, Noreau L, Bergeron H, Cloutier R, Dion SA,

St-Michel G. Social consequences of long term impairments and

disabilities: conceptual approach and assessment of handicap. Int J

Rehabil Res. 1998;21:127-141.

[25] Gray DB, Hollingsworth HH, Stark SL, Morgan KA. Participation

survey/mobility: Psychometric properties of a measure of participa-

tion for people with mobility impairments and limitations. Arch Phys

Med Rehabil. 2006;87:189-197.

[26] Hammel J, Magasi S, Heineman A, Whiteneck G, Bogner J,

Rodriguez E. What does participation mean? An insider perspec-

tive from persons with disabilities. Disabil Rehabil. 2008;30:

1445-1460.

[27] Gentry EM, Kalsbeek WD, Hogelin GC, Jones JT, Gaines KL,

Forman MR, et al. The Behavioral Risk Factor Surveys: design,

methods, and estimates from combined state data. Am J Prev Med.

1985;1:9-14.

[28] LaPlante MP, Kaye HS, Kang T, Harrington C. Unmet need for

personal assistance services: estimating the shortfall in hours of help

and adverse consequences. J Gerontol Ser B Psychol Sci Soc Sci.2004;59:S98-S108.