MENTAL RETARDATION Vol. 34, No.6, 341-351, December 1996

Advocate Development in the Field ofDevelopmental Disabilities: A Data..BasedConceptual ModelFabricio E. Balcazar, Christopher B. Keys, Joyce F. Bertram, and Thomas Rizzo

Abstract: We proposed a taxonomy of advocate development in the field ofdevelopmental disabilities detived from the systematic evaluation of a Partnetsin Policymaking program. Three developmental stages evolved: beginner, in­volved, and activist. Self-reports of advocacy actions and outcomes were col­lected from 3 participants with disabilities and 21 parents before and duringtraining. A follow-up, semi-structured telephone interview was conducted 5months after training ended. Results indicate significant improvements in thenumber of actions and outcomes reported by all participants. The activist grouphad the largest gains in actions and outcomes; they reported twice as manyoutcomes as did the othet participants. The implications of the proposed taxon­omy for participants' recruitment in advocacy training programs were discussed.

The current process of restructuring and im­proving services and supports for individu­

als with developmental disabilities emphasizescommunity inclusion and direct support for in­dividuals and families (Henry, Keys, Balea'ar,& jopp, 1996). Increased service options andchoice 35 well as public accountability for effi~

dent use of resources and for positive outcomesare aims of this process (Braddock, 1994;Bruininks, 1991; National Center on Educa·tionaI Outcomes, 1991). Pursuing such laudableobjectives requires advocacy by local, state, andnational coalitions of individuals with disabili­ties, family members. and professionals. Unfor­tunately, as Braddock (l994) pointed out, thepace of change is slow and the transition to aninstitution~freesociety is taking many years inmost parts of the country.

Bruininks (J 991) suggested that advocacy,and more specifically empowerment, will in~

creasingly become

the natural way of thinking abom the rights and mean­ing of cititenship for all people ... and become an in­dispensable part of restructuring services and supportsfor persons with disabilities. (p. 246)

Empowerment refers to an ongoing processof gaining greater access and control over val~

ued resources through critical reflection andgroup participation centered at the local com~munity (Cornell Empowerment Group, 1989).Although the construct of empowerment hasbecome widely used, little empirical evidenceis available to assist in understanding the de~

velopment of advocates as they become increas~

ingly involved in empowerment efforts. Kieffer(1983) interviewed leaders of grassroots orga~

nizations and proposed four developmentalphases for individuals involved in empower­ment activities: entry (initial step of gettinginvolved), advancement (the person belongs to

an organization and receives mentoring), incor~

porarion (a sense of mastery and competence isgradually acquiredL and commitment (the per­son develops a sense of mastery and participa­tory competence). Kieffer's taxonomy suggeststhat empowerment implies the transition froma sense of self as helpless victim to a sense ofself as assertive and efficacious citizen. How~ever, acquiring a "sense of empowerment" is notenough. The process has to be linked to con~

Mental Retardation, December 1996 341

crete actions and outcomes in order to make areal impact in people's lives.

In recent years, several advocacy trainingprograms have been developed to enhance theempowerment of people with disabilities andtheir family members (e.g., Hixson, Stoff, &White, 1992; Rhoades, Browning, & Thorin,1986; Spiegel-McGill, Reed, Konig, & Mc­Gowan, 1990). Balcazar, Mathews, Francisco,Fawcett, and Seekins (1994) evaluated the ef­fectiveness of an advocacy training programdesigned to increase involvement in advocacyactions and outcomes of consumers, familymembers, and/or board members from fourIndependent Living Centers. Participants re~

ceived training on how to (a) conduct action~

oriented meetings, (b) identify and report issues,and (c) develop plans for action. Balcazar et at.reported that representatives from the four par~

ticipating organizations reported a total of 117outcomes (range = 13 to 40) in areas such asremoval of barriers for physical accessibilitYicommunity education; and changes in policy,services, and budget allocations.

Wieck and her colleagues have developeda program called Partners in Policymaking toinvolve and empower people with developmen~

tal disabilities and their families in the policyarena (Wieck & Skarnulis, 1988). In this pro­gram, individuals with disabilities and familymembers are introduced to national leaders indisability policy, advocacy, and state~of~the-art

services for individuals with developmentaldisabilities. Zirpoli, Hancox, Wieck, andSkarnulis (1989) published the first evaluationof the impacts of the Partners in Policymakingapproach with encouraging results. However,because there were no baseline data on partici~

pants' advocacy activities, Zirpoli et at. couldnot compare participants' changes in perfor~

mance levels as a result of the training. Thisomission in reporting also precluded any analy­sis of whether baseline differences in advocacyactivity affected participants' reaction to andbenefit from the advocacy training. A 5~year

follow-up survey of Partners in Policymakingparticipants suggests continued involvement inadvocacy activities by program graduates(Zirpoli, Wieck, Hancox, & Skarnulis, 1994).However, only the percentage of individualsinvolved in various activities was reported; thus,it was not clear which participants were respon~

sible for what type of actions.In previous studies investigators have not

examined the ways in which individuals with

342 Menral Rerardation, December 1996

different levels of advocacy experience respondto advocacy training. As a result, several im~

portant questions have not been addressed: Doall participants benefit equally from advocacytraining, regardless of their prior experience asadvocates? Are the most experienced individu~

als likely to reach a ceiling in their performance,or do they benefit the most because they canput more of their energy into advocacy actionmore quickly than can their less experiencedcounterparts? Do the individuals with less ad~

vocacy experience improve the most? After all,they have the most room for improvement andnew opportunities. Hancox and Vivona (1990)recommended that individuals with no currentinvolvement in advocacy organizations be givenpriority to participate in the Partners inPolicymaking program. On the other hand,their lack of background experience may makeit more difficult for them to take action. No oneto date has examined whether prior advocacyexperience makes a difference in the subsequentbenefits of participating in advocacy trainingin developmental disabilities. Moreover, if suchdifferences exist, what are they and what aretheir implications for our understanding of em~powerment?

Our goal in the present study was to deter~

mine whether the posttraining differences inparticipants' advocacy performance were relatedto their level of advocacy activities and experi­ences prior to taking part in the first implemen­tation of Partners in Policymaking in Illinois.Participants were classified in three groups ac­cording to their entry level of advocacy experi­ence (beginner, involved, and activist). Weexamined the advocacy actions they reportedbefore, during, and after the end of the train~

ing program and the resulting outcomes of theiradvocacy efforts. Secondary measures includedthe impact of advocacy training on participants'affiliations with local or state organizations, theamount of services they received, their unmetservice needs, and their satisfaction with ser~

vices received.

MethodParticipants

Staff members from the Institute on Dis­ability and Human Development, a UniversityAffiliated Program (UAP) in DevelopmentalDisabilities at the University of Illinois at Chi­cago, were responsible for the first implemen­tation of Partners in Policymaking in Illinois.

Using mailing lists from the ARC/Illinois, theIllinois Planning Council on DevelopmentalDisabilities, and the Institute on Disability andHuman Development, UAP staff mailed appli­cation forms for the Partners in Policymakingprogram to almost 5,000 persons with develop­mental disabilities, family members, and agen~

cies. A selection committee composed ofindividuals with disabilities, family members,service providers, and project staff selected 35individuals to participate from the 140 appli­cations that were received. In the applicationforms, which were similar to the ones used inthe original Partners Program in Minnesota,potential participants were asked about theirwillingness and availability to participate in thetraining, their understanding of their advocacyrole, their commitment to advocacy, their af~

filiation with local or state organizations, andtheir previous experience in addition to rel·evant demographic information. Members ofthe selection committee scored each of the ap·plications based on the applicants' stated will·ingness to participate, their understanding ofand commitment to advocacy in developmen·tal disabilities, and their personal strengths (cf.Wolfensberger & Zauha, 1973). Then, ftomthose with the highest scores, the committeemade an effort to select individuals represent·

ing different types of disabilities, demogtaphiccharacteristics, and geographic areas from acrossthe state.

Because the program required a commit·ment to attend seven Friday and Saturday ses·sions over a 9·month period, 5 of those inviteddeclined to participate due to schedule conflicts.Moreover, of the 30 individuals who partici·pated in the training process, 6 did nOt returntheir monthly logs of advocacy activities, so wehave teported data from 24 participants (I male,23 females), an 80% tesponse rate.

The average age of participants was 41.2years (range = 31 to 72). Six participants hadfamily incomes of less than $20,000; 12, be­tween $20,000 and $50,000; and 6, over$50,000. Four of them lived in Chicago, 8 inthe suburbs, 7 in mid·size and small towns, and5 in rural areas. Three participants had disabili·ties (2 with mental retardation and 1 with mul­tiple sclerosis); the 21 parents had children(who ranged in age from 2 to 45 yeats) withmental retardation and a variety of other devel·opmental disabilities. Three of the participantswere African American, one was Hispanic, andone was Asian American. Eight participants hadcompleted high school, 10 had some collegeeducation, and 6 had a college degree. Figure 1displays the classification and characteristics ofthe three groups of participants.

BEGINNERBelongs to oneorganization;

passive member;receives few

services; less thanthree advocacy

actions during thelast nine months;

Median Actions = 1

.....

INVOLVEDBelongs to at leastone organization;active member;

obtains services asneeded; from 3 to

10 advocacyactions to address

personal needsduring the lastnine months;

Median Actions:;;; 5

ACTIVISTBelongs to Several

organizations atlocal and state

levels; hasleadership role;

obtains services forlocal group

members; over 10actions during thelast nine months,

Median Actions = 28

Figure I. Pathways to advocate development.

Men'al Rerardation, December 1996 343

Two of the individuals with disabilities re~

quired support during, before, and after thetraining sessions. Such support was providedboth by ptogtam staff and by a full-time sup­port person selected by the person with a dis~

ability and funded by the Partners program. Inone case this support person was an agency staffmember; in another, it was a friend with a physi~

cal disability. Support activities included re~

viewing and discussing the agenda for eachtraining session in advance, reviewing the con~

tent of each presentation, answering questionsduring the presentation, providing assistancewith the assignments, providing copies of theoverheads used in the presentations, and re~

viewing all the materials provided. The otherindividual with a disability did not require ad~

ditional support and was part of the activistgroup.

TrainingPartners in Policymaking was designed to

provide participants with high quality informa~

tion and intensive training. Participants hadopportunities to develop skills used in obtain~

ing the most appropriate supports and servicesfor themselves and others (Kaliszewski &Wieck, 1987). The program introduced partici­pants to some of the leading national figures inthe areas of policy, research, and services forpeople with developmental disabilities. Theprogram also provided linkages with local andnational advocacy organizations and educatedparticipants about current issues and state~of~

the~art approaches to community services andsupports. It offered opportunities for partici~

pants to become acquainted and connected withpolicymaking and legislative processes (Kal~

iszewski & Wieck, 1987). More detailed descrip­tions of the program are available elsewhere(Zirpoli et aI., 1989, 1994).

Participants engaged in small group discus­sions, reported progress on individual advocacyprojects during mealtime meetings, and engagedin informal sharing and mutual support duringthe evenings. Two~day conferences typicallyinclud.cd both structured and unstructured timefor sharing and social support. Participants werealso asked to complete homework assignmentsbetween sessions, which included visits to lo~

cal officials, service agencies, and advocacy or~

ganizations. All participants were encouragedto become actively involved in local and stateadvocacy organizations and to conduct an ad-

344 Mental Retardation, December 1996

vocacy project during and after the year of theprogram. Participants also shared and supportedeach others' efforts outside the training sessions.For some, lasting friendships developed. Projectstaff provided support and technical assistanceto participants on their projects between train~

ing sessions and for several months after thecompletion of the training sessions. Since theend of training, participants have worked to~

gether on a number of projects and maintaineda network through a newsletter and occasionalreunions.

Dependent VariablesAdvocac)' actions. We asked participants to

record the actions they took in the process ofpursuing their advocacy issues. Issues refer toany disability~related event or situation thatrequires action and that affects people with dis~

abilities and/or family members. Issues couldinclude unmet needs for information, services,or support; negative or positive changes in ser­vices and supports, budget allocations, or poli~

cies (Baleazar et aI., 1994). The followingcategories were lIsed to classify the types of ad~

vocacy actions reported: (a) phone calls, (b) of­fice visits or meetings, (c) letters and massmailings, (d) media reports (e.g., newspaperarticles, radio interviews), and (e) other activi~

ties (e.g., school presentations, public hearings,training, fund~raising,and volunteer activities).These activities could involve peers, serviceproviders, and/or public and elected officials.Participants were also asked to identify whethertheir actions responded to personal or familyissues and whether their actions affected otherindividuals with developmental disabilities atthe local, state, or national levels.

Prior to the first training session, partici~

pants received an initial evaluation survey inwhich they were asked to report their advocacyactivities at the local, state, and national lev~

els (e.g., letters, meetings, phone calls, presen~tat ions, testimony at public hearings, mediareports) for the 9 months prior to the begin­ning of the program. They were asked to iden~

tify the approximate month each action tookplace. Project staff discussed this form individu­ally with each participant during the first train~

ing session to answer any questions and checkfor completeness, Each participant was thengiven a diary/notebook to record all advocacyactivities during the 9 months it took to com­plete the training program. These diaries were

reviewed by project staff during each trainingsession. Data from the diaries were transcribedeach month into data logs. Two independentcoders classified the reported actions. Intercoderreliability was 86%. After calculating reliabil­ity, data coders discussed their differences andreached consensus for actions on which theyhad differed.

Outcomes of advocacy actions. These werechanges in the community and/or changes inrelevant processes related to participants' issuesand resulting, at least in part, from participants'actions. The outcomes were classified into thefollowing categories: (a) school inclusion (e.g.,get son/daughter included in neighborhoodschool); (b) advocacy supports (e.g., starr newlocal advocacy group); (c) legislative changes(e.g., help with passage of Illinois HB-4022regulating use of aversive procedures in educa,tional settings); (d) community education ac,rlvities (e.g., make presentations, prepare mediareports)j (e) appointments to decision·makingboards (e.g., become a member of the Board ofPeople First of Illinois); and (f) fund-raising(e.g., participate in grant writing, bake sales).Participants were encouraged to share duringmealtime meetings the outcomes of their advo,cacy efforts. Staff members contacted any mem,ber who disclosed an outcome to get detailsabout its occurrence and the actions that led toit. Participants were also asked to identify anyoutcomes during the follow·up interview. Wecollected copies of letters and newspaper ar­ticles. Project staff were able to verify the ac­curacy of 85% of the reported outcomes eitherby direct inspection (e.g., copies of media re,ports, copies of grant proposals) or by confir­mation from other individuals involved (e.g.,service providers, other parents, advocates).

Secondar)' measures. Several additionalmeasures assessed the impact of the program onparticipants' lives. Before and 5 months afterthe end of the training, we used a questionnaireto ask participants to identify (a) the numberof organizations they belonged to, (b) the num,ber of services received from local or state agen·cies, (c) the number of needs that were notcurrently being met, and (d) their overall satis­faction with the services received.

Follow-up evaluation. We conducted follow­up telephone interviews with each participant5 months after the end of the advocacy train·ing program. During this interview, participantswere asked to recall any advocacy activity that

they had performed during the month prior tothe interview and any related outcomes.

Analytical ProceduresWe conducted a number of statistical tests

to identify the level of significance of the dif­ferences among the three groups of participants.The performance differences among thesegroups were evaluated using one' way analysesof variance with their corresponding TukeyMatrix of Pairwise Comparisons. We also did aseries of t tests for within,group comparisons ofmeasures collected at the beginning and the endof the training process. A Pearson correlationwas used to identify whether demographic vari,abies were significantly correlated with advo·cacy performance during baseline. We alsoemployed a multiple regression using the demo·graphic variables as predictors of baseline per,formance.

ResultsAdvocacy Actions

Figure 2 displays the number of advocacy­related actions reported by the three groups ofparticipants during baseline and the 9 monthsof training. The means of the three groups dif.fered significantly during baseline, with themean of the acrivist group (35.1) being signifi­cantly higher than those of the involved (mean~ 5.9), P< .004, and rhe beginner (mean ~ 1.0),P< .001, groups. No significant differences be,tween the involved and beginner groups wereobserved during baseline. During the 9 monthsof training, the performance of members of thethree groups also differed significantly, with theactivist group having a mean of 73.5 actions,which was significantly higher than the meansof the involved (mean ~ 26.9), P < .002, andthe beginner (mean = 17.2), P< .0001, groups.Again, there were no significant differencesbetween the involved and the beginner groupsduring training. On the other hand, all threegroups significantly improved their performancecompared with their own baseline levels of ad,vocacy actions (beginner group, t[7] ~ 5.09, P<.001; involved group, t[7] ~ 7.72, P< .0001; andactivist group, t[71 ~ 4.23, P< .004).

Table 1 displays the number of advocacyactions reported by the three groups during thebaseline and training conditions according towhether group members focused their issues atthe personal, local, state, or national level. Wefound several significant differences among the

Mental Retardation, December 1996 345

BASELINE TRAINING100

0 90UJI- 80a:0c.. 70UJa:en 60z0

50;::::<.)« 40u.0a: 30UJCD

20::;;:::>z 10

01 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18

MONTHS

I~ BEGINNERS ---...... INVOLVED --- ACTivISTS

Figure 2. Number of actions reponed by Partners in Policymaking participants distributed in three groups; beginner (0 to 3advocacy actions in a period of 9 months), involved (4 to 9 actions in 9 months), and activist (10 or more actions in thesame period). The means for each condition are marked with cloned lines.

activist group and the other two groups, includ~

ing differences in the baseline actions at thepersonal, local, and state levels between theactivist and the beginner group as well as sig~

nificant differences at the local and state levelsbetween the activist group and the other twogroups. We also found significant and consis~

tent improvements from baseline to training forthe three groups of parricipants with issues atthe personal, local, and state levels. The onlyexception was for the activist group regardingissues at the personal level. Although activistsincreased their advocacy actions about 55%,this change was not significandy greater thanthat expected by chance because of the vari~

ability of individuals' performance. Overall,membets of the activist group repotted 63% ofall of the advocacy actions, whereas the indi~

viduals in the involved and beginner groupsreported 23% and 14% of the actions, respec­tively. It is interesting, as can be seen in TableI, that the largest proporrion of actions wererepotted at the local level, followed by actionsat the state, personal, and national levels. Onlythe activist group had some relevant participa~

tion at the national level, but it was signifi~

candy less than activities conducted at thepersonal, local, or state levels.

Table 2 summarizes the follow-up data col­lected through telephone interviews 5 months

Table 1Number of Advocacy Actions Reported According to the Focus of the Issues by Group

Focus ofissues

Beginner

Baseline Training

Involved

Baseline Training

Activist

Baseline Training

Total

n %

2243323

54

38673454955

1282

67' 104781,2 2471,3,.

122M.7 211 h.618 26

2858 ,10 5889,11

16b SSt.22d 83d•1

9907 7711

o 147 '0 216 11

51 • 1 441

oe.2 71 e,3

21.5 22',61 18' 13811

PersonalLocalStaleNationalGroup totalsMeans(per person) 1.0 17.2 5.9 26.9 35.1 73.5Range (0-3) (5-28) (4-8) (16-37) ('1-91) (35-134)

Note. N=8 for each group. Between-groups comparisons (using TUkey matrices of pairwise comparisons): ps <'.05. 2.001. 3.005. 1.008. 5.06. '.05. 7.08. 8.001. '.0001. 1°.004 11.002. Within-groups comparisons (based on /tests):ps < -.002. b.03. e.01. d.02. -.001. ·.06. 11.004. h.08.

346 Mencaf Recardarion, December 1996

Table 2Number of Follow~Up Advocacy Activities byGroup

local level and 20 outcomes (31 %) addressedissues at the state level. No issues at the na~

tional level were identified. Most issues at thelocal level centered around organizing effortstoward inclusion, advocacy and leadership de­velopment, and public education. Most issuesat the state level focused on leadership devel­opment, public education, and funding of ad~

vocacy activities. The legislative change refersto the efforts of one participant, who was re~

sponsible for introducing a bill and encourag~

ing state legislators to pass the bill into law. Thelaw (HB-40ZZ) mandated the State Departmentof Education to regulate the use of corporalpunishment procedures in the public schooldistricts.

Table 4 summarizes additional measurescollected at the beginning and the end of thetraining process. We found significant dif~

ferences among the means of the three groupsduring baseline regarding the number of orga­nizations to which participants belonged, p <.04, and the number of services they received,p < .01. Before the training, the activists be­longed to more organizations than the begin~

ners and received more services than did theother participants. Before training, members ofthe three groups did not have any significantdifferences regarding their unmet needs or theirsatisfaction with social services received. Nosignificant differences among the three groupswere observed in any of the variables aftertraining. We were pleased to find that aftertraining, participants in the beginner group sig~

nificantly increased both their membership inorganizations, p < .03, and the number of ser~

vices they received, p < .04. After training,members of the activist group also reported sig~

nificant improvement in their satisfaction withservices received, p < .06.

Finally, we tried to identify whether de~

mographic variables, such as participants' age,race, place of residence, gender, income, levelof education, age of the child, membership inadvocacy organizations, number of services re~

ceived, and number of unmet needs, weresignificantly correlated with advocacy perfor~

mance during baseline. Participants' member~ship in advocacy organizations was the onlyvariable significantly correlated with baselineperformance, r ~ .57, P< .004. We also foundthat membership in advocacy organizations wasthe best predictor of baseline performance, r 2( I,22} ~ .32, F(l,ZZ} ~ 10.58, P< .004. These find-

176

Total7270

Involved Activist

Group

34

BeginnerActivity

Phone callsOffice visitslmeetings 40" 44 93 177

Letters 6 1" 16" 23Media reports 9 1 16 26Other 3 14 24 41Group sum 92 130 221 443Mean 11.5··· 16.2 27.6··· 18.4

Note. N= 8 in each group. Tukey test used for analyses..p < .08. ••p < .03. •••p < .02.

Training outcomes and other measures. Table3 summarizes the outcomes that were attributedto the participants' involvement in the train~

ing process. We found significant differencesamong the three groups in the number of out~

comes teported, with the mean of the activistgroup (4.0) being significantly higher than themeans for the involved (2.1), P < .04, and be­ginner (2.0), p < .03, groups. Overall, only 9outcomes (14%) referred to personal issues, andall those concerned school inclusion. A totalof 36 outcomes (55%) related to issues at the

after the last training session. Overall, the threegroups had significant differences regarding thetotal number of actions, the number of officevisits/meetings reported, and the number oflet~

ters to public officials mailed. Due in part tothe variability in participants' actions, the threegroups did not differ significantly with regardto the number of phone calls, media reports, orother activities. Using the number of actionsreported at follow~up,we evaluated participants'progress according to the proposed advocacyclassification. Two of the individuals in the be~

ginner group were still performing at the samelevel, 2 were performing at the involved grouplevel (range ~ 5 to 7 actions), and 4 were per­forming at the activist group level (range = 16to 26 actions). In the involved group, 3 par­ticipants were still performing at the same level,and 5 of the participants were performing at theactivist group level (range = 11 to 32 actions).The range of actions for the individuals in theactivist group was 11 to 56, with 2 participantsperforming at about the same monthly rate theyhad before, 4 participants doubling theirmonthly average performance, and 2 individu~

als performing 10 times above their previousmonthly average.

Mental Retardation, December 1996 347

Table 3Reported Outcomes by Group

Level/Outcome category

PersonalObtained or moved child toward full inclusion in local schools

LocalOrganized school-wide or district-wide changes for full inclusionOrganized local advocacy groupsOrganized advocacy training eventsTook leadership roles in local advocacy organizationsPresented at local conferences on disability issuesPublished articles in local mediaConducted fund-raising activities

StatePresented at state conferences on disability issuesInitiated state legislative change (HB-4022)Applied for and obtained funding of grant proposalsTook leadership roles in state advocacy organizations

Total

Beginner

3212111

2o1,

16'(25%)

Group

Involved Activist

3 5

1 31 32 23 22 21 20 1

1 40 12 31 4

17" 32····(26%) (49%)

Note. N = 8 in each group.*p < .02. up < .04.

Table 4Secondary Measures Regarding Social Integration and Services by Group

Group/Secondary measure

Before training

Mean soAfter training

Mean so

1.51.42.51.2

2.01.41.90.5

2.141.281.864.13

3.17a

2.66b

1.503.77

1.40.90.91.8

1.10.81.11.3

2.000.873

0.624.15

1.25a. 1

1.00b.2

1.004.03

Beginner1. Membership in organizations2. Number of services received3. Number of unmet needs4. Overall satisfaction with services

Involved1. Membership in organizations2. Number of services received3. Number of unmet needs4. Overall satisfaction with services

Activist1. Membership in organizations 3.12 1 1.7 3.86 1.52. Number of services received 2.752.3 1.9 2.86 1.53. Number of unmet needs 1.37 1.5 1.14 1.14. Overall satisfaction with services 3.S1 C 1.2 4,43c 1.1

Note. Between-groups comparisons (using Tukey): ps < 1.04. 2.04. 3.02. Within-groups comparisons (ttests): ps <-.03, b.04. c.06.

ings suggest that members of advocacy organiza~

tions were more likely to engage in advocacy ac­tions prior [Q training than were nonmembers.

DiscussionA growing number of persons with disabili­

ties and their family members are participatingin systematic advocacy training programs suchas Partners in Policymaking. The present study,through our examination of the individual di£'ferences in experience and performance thatparticipants bring to these training programs,provides a unique contribution to the advocacy

training literature. The proposed three grouptaxonomy was detived from the actual numberof actions and outcomes identified during 2years of advocacy activity. This taxonomy helpsto characterize and organize individual perfor­mance differences throughout the variousphases of the study.

The results strongly suggest that all partici­pants benefited from their involvement in ad~

vocacy training. There was both relativestability of baseline activity levels, especiallyfor the beginner and involved groups, and mini~

mal overlap between baseline and training ac~

348 Mental Retardation, December 1996

tivity levels fot each of the thtee groups. TheoU[comes reponed reflect the combined effectof the information provided, support given, andthe technical expertise made available to par·ticipants through the program.

It is interesting that all individuals do notappear to benefit in the same way from theirparticipation in the training. The individualsin the activist group appear to have obtainedgteatet benefit because they wete likely to bepart of local or state networks. Moreover, theyhave more supports and more knowledge abouthow to take action and implement changes thando beginners. The group of activists were re·sponsible for a disproportionate share of theactions and outcomes reported in this study. Onthe other hand, individuals with low entry lev­els of advocacy activity were more likely thantheir active counterparts to join advocacy or~

ganizations and to demand more services dur~

ing the coutSe of the progtam. Thus, althoughthe individuals who were initially more activebecame even more so, beginners were takingaffirmative steps to develop organizational sup­port for greater involvement in the future. Ineffect, analysis of reported actions indicates thatat least 4 persons in the beginner group and 5from the involved group were performing at theinitial activists' level during follow~up (over 10actions).

The proposed stages of advocates' develop~ment have important implications for recruit~

ment of participants, which in turn influencesthe selection of advocacy training proceduresand content. Our findings support the impor~

tance of asking potential participants about theextent and nature of their previous advocacyexperience. In effect, previous experience as anadvocate and membership in advocacy organi~

zations were identified as significant predictorsof the ovetall advocacy petfotmance of the pat­ticipants. This information can also be used toorganize a more tailored approach to advocacytraining. For instance, more experienced par­ticipants could benefit from learning strategiesto advocate at the state and national levels be~

cause they are likely to have had some experi~

ence at the personal and local levels. On theother hand, less experienced participants wou Idbenefit from learning specific strategies for ad~

dressing their personal issues (e.g., obtainingneeded support services, securing school indu~sian for their own child) and from learning to

network at the local level. In any case, inten~

sive advocacy training programs in which state~

of~the~art practices, hands~on experience, andpractice of the newly acquired skills are empha~

sized are likely to benefit all participants, re~

gardless of their previous experience. Futureresearchers could explore with more detail notonly the kinds of actions taken by llaining pat­ticipants but the effectiveness of their actionsin achieving desited goals. It would be usefulrolearn more about how certain types of actionslead to better or perhaps quicker outcomes thando others.

Results of the ptesent study clearly delin­eate the benefits of participating in advocacytraining and the differences among those whoparticipate in such training. However, in thisstudy we did not address what happens to thosewho do not take part in advocacy training nordid we compare Partners in Policymaking to

other advocacy training programs. Results ofsome intervention research suggest that non~

participants' functioning can deteriorate with~

out the support ofan intervention (cf. Bartunek& Keys, 1982). Future researchers should notonly compare trained versus untrained individu~

als but also the advocates' developmental stage.For example, our data suggest that trained indi~

viduals who are in their involved stage of advo~cacy development might still be outpetfotmedby individuals in the activist stage-even ifthose in the activist stage have never been for~

mally ltained.One challenge for future advocacy train~

ing planners is to be able to demonstrate theirprogram's effectiveness in fostering advocates'development from one stage to the next, frombeginner to involved to activist. One new cri~

terion of evaluation of advocacy training pro~

grams could be the proportion of participantsthat move from beginner to involved to activ­ist as a result of the intervention. Based on thatcriterion, this Partners in Policymaking programstarted with a tatio of 8:8:8 (beginners, in­volved, and activists) and ended with a ratio of2:5: 17, with mOte than double the numbet ofactiyists (reporting more than 10 actions) atfollow-up. There wete 2 individuals in the be­ginner group and 3 in the involved group whoreported no increases in their advocacy activi~

ties at follow-up (21% of the total). The CUt­rent practice of reporting the total number ofactions taken by a group of advocacy trainingparticipants might provide an incomplete pi·c~

ture of the actual impact of the intervention

MenIal Retardation, Decembet 1996 349

because of individual performance differences.We could ask, are only a few of the participantsresponsible for most of the actions, or are thoseactions distributed evenly across participants?The range and the median number of reportedactions could give an idea of the presence ofactivists in any given group.

It is important to note that all partici­pants-regardless of their group classification­consistently focused most of their advocacyefforts at the local level. This local focus is aninteresting finding because it shows that peoplecan easily move beyond their own personal in­terest to address the needs of others like them­selves, especially other parents or consumerswith whom they have direct contact in theirown locale. Participants also received a greatdeal of support and encouragement from eachother. In fact, some of those relationships con­tinue to be strong after several years. They devel­oped a sense of comradeship, in part, as a result ofdiscovering the similarities among the issues theywere facing. That is one of the great advantagesof advocacy group work, and it provided a foun­dation for collaborative advocacy work by partici­pants following the training program.

Finally, at the beginning of training themembers of the activist group were receivingabout three times as many services as membersof the other two groups. These data suggest apossible added benefit of being an active advo­cate: Activists become more knowledgeableabout the network of services available to themand gain more access to those services. In anenvironment in which demand for services issteadily increasing while service agencies haveseen their budgets decrease, advocacy skills ap­pear to be a useful resource for people in need. AsBruininks (1991) pointed out, advocacy is an in­tegral part of the future of developmental disabili­ties in this country. It is unfortunate that budgetcuts are forcing all users ofservices to become moreaggressive in the pursuit of their needs. On thepositive side, consumers and family members arelearning to take a proactive role in rehabilitation,education, and inclusion processes and are hav­ing greater control over relevant decisions made.As our understanding of the development of ad­vocates grows, so will our capacity to strengthenthe voice and impact of the advocacy movementin developmental disabilities.

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350 Mental Retardation, December 1996

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Received 7/21/95, first decision 9/29/95, accepted2/2/96.Editor~in~Charge; Steven]. Taylor

This project was supported in part by a grant from the Illi­nois Planning Council on Developmental Disabilities tothe Institute on Disability and Human Development andthe Department of Psychology at the University of Illinoisin Chicago. Special thanks to all the Partners who left apermanent impression on our minds and hearts. Alsothanks to Juana Garare, Michele Epstein, and Ginny Cooke

for their hard work and enthusiasm. Requests for reprintsshould be directed to the first author.

Authors: FABRICIO E. BALCAZAR, PhD, As·sociate Professor; CHRISTOPHER B. KEYS, PhD,Professor; and JOYCE F. BERTRAM, MA, Train­ing Specialist, Research Unit (MjC 626), Instituteon Disability and Human Development, Universityof Illinois at Chicago, 1640 W. Roosevelt Rd., Chi­cago, IL 60608·6904. THOMAS RIZZO, PhD,Research Associate, Department of Medicine,Northwestern University, Derry Building, 15th Floor,303 E. Chicago Ave., Chicago, lL 60611.

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