Empowering People with Physical Disabilities Through Advocacy Skills Training

8/10/2019 Empowering People with Physical Disabilities Through Advocacy Skills Training

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American Journal of Community Psychology, Vol. 18, No. 2, 1990

E m p o w e r i n g P e o p l e w i t h P h y s i c a l D i s a b i l i t i e sT h r o u g h d v o c a c y S k il ls Tr a i n in g I

Fabr ic io E . Ba lcazar 2 To m Seekins S tephen B. Faw cet tand B i l l L . Hopk insThe University of Kansas

Members of an advocacy organization for people with physical disabifitieswere trained to identify and report issues at group meetings. In addition,two consecutive chairpersons were trained to conduct action-oriented meet-ings. Measures of group members activities outside meetings and related out-comes on identified issues were also collected. Results indicated increasesin the number of disability-related issues reported by trained members andconsistent improvements in chairperson performance following training.Retrospective interviews and permanent records showed that advocacyactivities, as well as the outcomes of members actions, increased after train-ing. These findings and their implications for the empowerment of peoplewith disabilities are discussed.

E m p o w e r m e n t - t h e p r o c e s s b y w h i c h p e o p l e g a i n m o r e c o n t r o l o v e r t h e

d e c i s i o n s t h a t a f f e c t t h e i r o w n l i v e s - i s a k e y c o n c e p t in c o m m u n i t y o r -

~This research was supported by a grant GOO8006928 from the National Ins titu te on Disa-bility and Rehabilitation Research (NIDRR) to the Research and Ti'aining Center on Indepen-dent Living at the University of Kansas. This article was based on the dissertation of the firstauthor submitted to the Department o f Human Development and Family Life at the Universi-ty of Kansas. Port ions of these data were presented at the meeting of the Association for Be-havior Analysis, May 1985. Tom Seekins is now research director at the Research and TrainingCenter for Rural Disability Services in Missoula, Montana, and Bill Hopkins is now at theDepar tment of Psychology, Aubu rn University. We are indebted to the members of Indepen-dence in Action o f Lawrence, Kansas, f or their willingness to teach us abou t advocacy organi-zations. We will always remember our friend Kalen and the many lessons he taught us aboutcourage in life. We also thank Yolanda Suarez, R. Mark Mathews, Adrienne Paine, and Su-san Elkins for their helpful comments and suggestions on earlier versions of this manuscript .

2All correspondence should be addressed to Fabricio E. Balcazar, Research and Training Centeron Independent Living, Hawo rth Hall 3111, University of Kansas , Lawrence, Kansas 66045.

2810091 0562/90/0400 0281506.00/0 1990 Plenum Publishing Corporation


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ganiz ing (Al insky, 1971), soc ia l ac t ion (Kah n, 1970), and co m m un i ty osv-cholog y (Fawcet t , Seekings, W ang, M uiu , a nd Suarez de Balcazar, 1984; Rap -pap or t , 1981). Rap pa po r t (1984), how ever, no te d com m un i ty psycho log i s t s 'd i f fi c u l ty i n t r an s la t in g t h e m e t a p h o r o f e m p o w e r m e n t i n t o r e s ea r c h a n d a c -t ion . Th i s desc r ip t ive s tudy p resen t s empi r i ca l i n fo rm at ion on the emp ow er-m e n t p r o c e s s c o n d u c t e d w i th a c o n s u m e r a d v o c a c y o rg a n i z a ti o n f o r p e o p l ewi th phys ica l d isabi l i t ies .

G r o u p a d v o c a c y h a s lo n g b e e n a n i m p o r t a n t f e a t u re o f A m e r i c a n s o ci -e ty (De Toquevi l le , 1864) . I t s re la ted organiza t ions have served as impor-tant m edia t ing s t ruc tures (Berger Ne uha us , 1977) be tw een indiv idual causesa n d p r o p o s a l s a n d g o v e r n m e n t a l r e sp o n s iv e n e s s. A d v o c a c y h as b e e n u s e de ffec t ive ly by o rgan ized cons t i tuenc ies to ga in pow er, and i ts t ac ti c s havef r e q u e n t l y o v e r l a p p e d w i t h t h o s e o f c o m m u n i t y o rg a n iz i n g ( C o o k , 1 97 5).Krauss (1983) sugges ted tha t peop le invo lved in adv oca cy ac t iv i ti e s can de -ve lop a c r i t i ca l wor ld v iew in the course o f the i r s t rugg les , and they cometo be l i eve in the i r ow n ab i l ity to ac t . G rou p adv oca cy has ap pea re d in suchform s as ne igh borho od associa tions (Bachelor Jones , 1981; M aye r Blake ,1982), tenan ts ' o rganiza t ions (Shlay Fau lkner, 1984), we l fare r ights group s(Ingram, 1988; Tr ip i , 1984), and consum er advo cac y organiza t ions for peop lewi th d isabi l it ies (Fr iedm an, 1976).

Severa l cu r r i cu la have bee n deve lo ped to t r a in c i t izens to bec om eeffec t ive advoc a tes . T hey inc lude sk il ls such as pe r sona l l eade r sh ip , g roupm a n a g e m e n t , p r o b l e m s o lv i ng , id e n t if i c at i o n a n d d i s c u s si o n o f c o m m u n i t yissues, negot ia t ion , know ledge of the pol i tica l pow er s t ruc ture an d par l iamen -ta ry p roced ures , and know ledge abo u t h ow to u t il ize loca l r e sources (Fans -low, 1982; M cClel land, Rhinesmi th , Kr is tense , 1975; Perse l l, 1976; Richie ,1975; R ossin g H ea sley , 1987; W il l iams, 1981).

T h e e f fe c t iv e n e s s o f c o m m u n i t y l e a d er s h ip a n d a d v o c a c y t ra i n in g p r o -g rams , how ever, has no t been eva lua ted consi s ten t ly (Gardner, 1980 ; W ood -ya rd , 1980), and in some cases, r epor t ed e ffec t s a re nu l l (Co ok , Ho wel l ,

W eir, 1985; W eiss, 1972) . I ssue ident i fica t ion a nd ac t ion p lanning were amo ngthe sk il ls t augh t b y Br iscoe , Ho ffm an , a nd B a i l ey (1975) to boa rd m em berso f a se l f-he lp educa t ion p ro jec t fo r low- incom e peop le . Br i scoe e t a l. r epor t -ed d i ff i cu lt i e s in ma in ta in ing the t r a ined sk il ls , how ever, and they d id no tp rov ide me asures o f change in the g roup ' s ove ra l l e ff ec t iveness in so lv ingrepor t ed p rob lem s e i the r in s ide o r ou t s ide the g roup . Seek ins , Mathew s , andFaw ce t t (1984) ana lyzed the e ffec tiveness o f t r a in ing l eade r s o f the execu t ivebo ard o f a se lf -he lp pover ty se rv ice agency to l ead g ro up mee t ings . A l thoughthe s tudy p rov ided so m e ev idence o f ma in tenance o f t r a ined skills an d gener-

a l i za t ion to c losu re o f agenda i t ems , no measures o f changes in the ove ra l le ff ec t iveness o f the boa rd were r epor t ed .The purp oses o f th is s tud y were (a ) to exam ine the e ffec t s o f t ra in ing

m em bers to r epor t i s sues dur ing ad voc acy g roup m ee t ings , and (b ) to eva lu -


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Em powering People W ith Disabilities 83

ate the effects of training two consecutive chairpersons to conduct action-oriented meetings. Secondary measures included the number of advocacy ac-tions conducted by group members outside meetings and the resulting out-comes of such actions. Since the study was conducted in the context of anongoing consumer organization, with some members volunteering for train-ing and others not, the da ta necessarily confound self-selection into trainingwith the effects of the training per se. A goal of this study is to help thereader unders tand the empowerment process rather than to demonstrate ex-periniental control over the behaviors that define the construct.

H i s t o r y a n d D e s c r i p t i o n o f t h e S e t t i n g

roader C ontec t o f the Research

This research occurred in the broader context of the independent livingmovement for people with physical disabilities (Frieden, 1978). A basictenet of this movement is that consumers advocate for their right to live in-dependently in their communities and not in more restrictive environments,such as nursing homes (De Jong, 1983). Advocacy becomes the avenue bywhich people with disabilities can make their communities accessible and sup-portive of independent living.

This research also occurred in the context of a somewhat colonialand noncollaborative relationship (Serrano-Garcia, 1984) between fledglingconsumer advocacy organization and the parent or ga ni za ti on -a local in-dependent living center (ILC)-with which it was affiliated. The ILC em-ployed six professionals and six paraprofessionals providing services in theareas of independent living skills training, housing placement, advocacy, andcounseling. The center also operated a paratransit system and a demonstra-tion project training consumers to use computers. The ILC was partially fund-ed by Title VII Part B appropriations of the Rehabilitation Act of 1973.

His tory of the Consumer Organiza t ion

The organization had been in existence for 3 years prior to training andseverd as an advisory committee to the local ILC. The role of the group wasprimarily symbolic, since members had taken few official actions. The exis-tence of such a group was required by the bylaws of the ILC, and the ILCdirector had direct responsibility for starting the committee. At least two ILC

staff members attended regular meetings. They influenced the group's agendaand participated in the discussion of issues during group meetings. Directobservations, interviews, and reviews of audiotapes of meetings for about1 year prior to training indicated that meetings were disorganized, discus-


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sion of one topic blended into another topic, members spent a majority oftime discussing internal organizat ional matters , and they spent little time dis-cussing issues relevant to persons with disabilities. Members rarely reacheda decision, and very few proposed actions were implemented outside groupmeetings.

n t ree In to the Se t t ing

At the star t of this study, the second author was a member of the ILCBoard of Directors. During one such meeting, he reported that the localResearch and Training Center on Independent Living, where he was a researchassociate, was in the process of developing materials to assist advocacy or-ganizations improve their operation. The consumer group s chairperson, whowas attending that meeting, approached him with the idea of getting assistanceto transform the advisory committee into an advocacy organization. Shewanted more consumer involvement and a greater sense of ownership formembers. She complained about the passivity of some members during groupdiscussions and their limited involvement in addressing identif ied issues. Inaddit ion, she was personally concerned about her lack of experience in chair-ing meetings.

The chairperson invited the second author to attend a group meeting

and explain his research interests. At that meeting, he indicated that the train-ing materials were being developed and that the opportunity to observe thegroup process would be a useful contribution. He also indicated that theRT C/ IL would be willing to train group members individually and request-ed permission to attend regular meetings and audiotape them.

Group members assisted researchers in identifying target skills andprovided feedback on the training materials and procedures. Researchersremained as observers throughout the period of data collection and did notinfluence group members decisions regarding who was to be trained, when

training was to be conducted, internal organizational processes (e.g., elec-tion of officers), or selection of issues to be discussed during group meetings.

This collaborative process required breaking with the practice of con-ventional research, which relies on theoret ical constructs as the basis for fieldresearch. Instead, it required a pragmatic approch, focusing attention onproblems identified by group members and developing strategies to deal withthem.

M E T H O D

P a r t i c i p a n t s a n d S e t t i n g

Performances of 14 members of an advocacy organization for peoplewith physical disabilities were monitored for a period of 2 years. All group


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Em powering People W ith Disabilities 85

members were invited to par ticipate in training. Six members volunteered,including the group chairperson. Trained members included four women andtwo men, ranging in age from 23 to 40 years. Two had multiple sclerosis,two had spinal cord inju ry, one had cerebral palsy, and one was a polio sur-vivor. Each participant signed a voluntary consent statement and was paid

25 as compensation for time spent in data collection. Of the six trained par-ticipants, four had completed high school. One of them was later electedto replace the chairperson and was in office for 1 year. Training sessionswere conducted in participants' homes and at the local ILC. Two of thetrained participants moved out of town during the 1 th month of data col-lection.

Eight group members did not participate in training. Of those mem-bers, two left the group by the time training was going to start, and threeattended meetings sporadically. Only three of these members attended meet-ings regularly, and they indicated no interest in the training. The untrainedgroup members included four women and four men, ranging in age from23 to 42 years. Three of these members had spinal cord injuries, two hadmultiple sclerosis, one was blind, one had cerebral palsy, and one had a legampu tated . O f the eight untrained members, six had completed high schooland one was attending college.

Observations o f members' performance before training indicated simi-

lar low levels of participation in group discussions for those members thatwere latter trained and those that did not receive training. The distinctionbetween trained and untrained members' performance could be made onlyafter the training took place.

Members' at tendance at group meetings was irregular. Lack o f accessi-ble transportation, poor motivation, and occasional health problems werecommonly cited as reasons. Attendance of trained participants ranged from2 to 5 persons per meeting (M = 3.3), and o f untrained participants rangedfrom 1 to 7 persons (M = 3.7).

P r i m a r y M e a s u r e s

Target behaviors were identified through discussions with group mem-bers and analyses of members' performance during group meetings. In ord-er to increase group members' participation in group discussions and improvechairperson performance, two target behaviors were selected for training:

1. Repor t ing disabi l i ty re la ted i ssues .This behavior was defined as agroup member describing any event in the community that affected disabledpeople's ability to live independently . Examples of reported issues includedviolations of the local handicapped parking ordinance, needed curb cuts indowntown streets, and enforcement of fire safety codes at local nursinghomes. Reports of issues also included updates on previously raised issues


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(e.g., a committee report about a project to improve at tendant care servicesfor persons with severe disabilities).

2. Closing discussions of new disabil i ty related issues.This behaviorwas defined as the chairperson directing group members to decide what todo about a new reported issue. Closure could be attained by one of the fol-lowing actions: (a) voting on a motion; (b) forming a committee, which thenbecame responsible for planning and conducting the action(s); or (c) tablingthe item until the next meeting, which postponed action for at least 1 month.Updates on actions taken to deal with previously reported issues were notregarded as opportunities for obtaining closure.

Reliabil i ty

Reliability was evaluated by having two independent observers listento tapes f rom eight group meetings randomly selected from meetings beforeand after training. The first author served as primary observer, and a per-son unaware of the study s purpose served as reliability observer. Several prac-tice trials were conducted to familiarize the naive observer with the voicesof the participants and recording procedures. The naive observer revieweddefinitions of disability-related issues and several examples and nonexam-ples of issues and other items reported during group meetings.

When listening to the tapes, each observer listed all the agenda itemsdiscussed during each meeting, indicating whether each item was an issueor a nonissue (i.e., announcements, group management business). A totalof 103 agenda items were identified (kappa -- .92). The observers also indi-cated (kappa = .80) whether each item was closed by the chairperson or notclosed (i.e., voted on, item tabled, responsibilities assigned).

S e c o n d a ry M e a su r es : A d v o c a c y A c t i o n s a n d O u t c o m e s

Although no specific training was provided to participants regardinghow to implement selected actions, the authors collected as much informa-tion as possible regarding the actions implemented by group members. Theseactions involved all group members, who, in many instances, worked togetherin small groups. Actions occurred in a variety of settings relevant to identi-fied issues, such as the city planner s office, the boar droom of the indepen-dent living center, or the city commission meeting room.

Three data collection strategies were used. First, the researchers main-

tained a monthly record o f issues reported and members responsibilities forconduction activities outside meetings. Second, the researchers conductedretrospective interviews with the chairpersons, secretaries, and some of the


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group members participating in the activities. These interviews were conductedafter the 1 lth and 21st months of data collection. All interviews were audio-taped. The researchers asked people to iden tify the type of activity conduct-ed for each reported issue, the names of the group members involved, andthe results of such action(s). Third, the researchers inspected permanentproducts and records of group outcomes and activities. Copies of the minutesof each meeting and copies of the letters and documents sent by group mem-bers to decision makers and service providers were collected.

Reliabili ty o f Action and Outcomes

Interviews and direct inspection of permanent records were used to veri-

fy the reliability of reported engagements and outcomes. The agreements be-tween group members' reports and the evidence collected by the researchersregarding actions that took place on identified issues and those issues thatdid not have any actions were evaluated. A total of 48 different issues werereported during 21 months of data collection. Group members identified atotal of 94 actions conducted to address 28 different issues. The researcherswere able to verify 79 of those actions either by direct inspection of records(65 ) or by confirming the action with at least two participants (35 ). Relia-bility scores were calculated to evaluate the agreement between participants'

reports of actions on identified issues and the actions verified by the research-ers (kappa = .65).

A total o f 19 outcomes regarding 15 repo rted issues were identified bythe participants. The researchers were able to confirm 13 of those outcomes(68 ) by direct inspection of permanent produc ts. Kappa reliability scoreswere also computed for the agreements between group members reports' o foutcomes o n identified issues and the outcomes verified by the researchers(kappa = .69).

Training ackage

Several training manuals (Seekins, Balcazar, & Fawcett, 19863) weredeveloped to teach targeted skills to individual members and the chairper-sons of the group.

Training in Identifying and Reporting Issues Training in identifyingand report ing issues was conducted with six members: Four received instruc-

3These training manuals are available upon request from the first author Order numbers M-11to M-14).


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t i ons one pe r son a t a t ime , and the r em ain ing tw o were t r a ined toge the r.Tra in ing was comp le ted dur ing 1 m on th and las ted ab ou t 12 hours . T w o tra in-ing manua l s were used to ins t ruc t pa r t i c ipan t s in iden t i fy ing and repor t ingi ssues. The f i r s t m anu a l fo l lowed a fo rm a t tha t inc luded de f in i t ions o f theresponses r equ i red to iden t i fy d i sab i li ty - re l a t ed i s sues , a desc r ip t ion o f thes t eps fo r wr i t ing com ple te r epor t s o f i s sues, exam ples o f d i sab i li ty - re l a t edissues, exam ples o f com plete repo rts , a nd pract ical exercises for selecting rele-van t is sues and p repa r ing c om ple te r epor t s fo r the g roup . T he second t r a in -ing manua l p rov ided a menu o f 35 poss ib le ac t ions tha t r equ i red va r iousdegrees o f complex i ty and e ffo r t s , r ang ing f rom pos tpon ing ac t ion to o r-gan izing a b oy co t t . F or each ac t ion , the re w as a desc r ip tion o f the ac t iv it ie sinvolved, the ac t ion ' s goal , requ i red resources , and a l is t o f pos i tive and nega-t ive consequences fo r t ak ing the ac t ion .

Chairperson TrainingA t ra in ing m anua l was used to t each the cha i r-pe r son h ow to l ead ac t ion -o r i en ted m ee t ings . Th i s ma nua l fo l lowe d an in -s t ruc t iona l fo rma t s imi la r to the ones a l r eady desc r ibed . Tra in ing wascon duc ted in four ses s ions o f ab ou t 2 hours each . Th e f i r s t t r a in ing ses sioninc luded an ov e rv iew o f hand l ing ac t ion -o r i en ted m ee t ings and the s t eps fo rp repa r ing the agenda , open ing the mee t ing , and beg inn ing the d iscuss ion o fissues and gro up bus iness . Th e seco nd t ra in ing sess ion cov ered ac t iv it ies in-volv ed in handling vote s and closing discussions of issues, systema tical ly plan-ing ac t ion projec ts , and c los ing group meet ings . R ole p laying was used dur ingthe r em ain ing tw o t r a in ing ses sions to he lp the ch a i rpe r son p rac t ice cha i r ingthe mee t ing and hand l ing i s sue d i scuss ions .

An in te r rup ted t ime se r i e s des ign wi th nonequ iva len t g roups (CookC a m p b e l l , 1 97 9) w a s u s ed to c o m p a r e t h e p e r f o r m a n c e o f t r a in e d m e m b e r sr e la t iv e to t h e p e r f o r m a n c e o f u n t r a in e d m e m b e r s . T h e d a t a p r e s e n te d h e r ea re mea sures o f gene ra l iza t ion o f t ra in ing e ffec t s to ac tua l g roup mee t ings .

Ra t ing sca les were used to assess t ra ined m em bers ' sa t i s fac t ion wi th thet ra in ing mater ia ls and proced ures (W olf , 1978) . Th ey were asked to ra te the ir

sa t i s f ac t ion wi th the t r a in ing on a 7 -po in t L ike r t - type sca le , r ang ing f romvery dissat is fied(1) to very sa t is f ied(7) . Rat ings of overa l l sa t i s fac t ion wi tht ra in ing procedures averaged 6 .5 (on a 7-poin t scale). T he average group m em -bers ' r a t ings o f the impor tance o f t r a in ing was 7 .0 .

R S U LT S

Figure 1 d i sp lays the num ber o f d i sab i l i ty - re l a ted i s sues repor t ed by

t ra ined and un t ra ined pa r t i c ipan t s du r ing 21 m onth ly mee t ings o f the ad -voc acy o rgan iza t ion . Tra ined m em bers r epor t ed an ave rage o f 0 .6 is sues pe rmee t ing dur ing base l ine and 3 .2 i ssues pe r mee t ing a f t e r t r a in ing . Un t ra ined


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members reported an average of 1.1 issues per meeting. The C statistic(Tryon, 1982) was calculated to evaluate the variability in successive da ta pointsrelative to changes in slope before and after training. The performance of

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Empowering People with Physical Disabilities Through Advocacy Skills Training

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