Mental Retardation

We proposed a taxonomy of advocate development in the field of developmental disabilities detived from the systematic evaluation of a Partnets in 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 during training. A follow-up, semi-structured telephone interview was conducted 5 months after training ended. Results indicate significant improvements in the number of actions and outcomes reported by all participants. The activist group had the largest gains in actions and outcomes; they reported twice as many outcomes as did the othet participants. The implications of the proposed taxonomy for participants' recruitment in advocacy training programs were discussed. T current process of restructuring and improving services and supports for individuals with developmental disabilities emphasizes community inclusion and direct support for individuals and families (Henry, Keys, Balea'ar, & jopp, 1996). Increased service options and choice 35 well as public accountability for effi~ dent use of resources and for positive outcomes are aims of this process (Braddock, 1994; Bruininks, 1991; National Center on Educa· tionaI Outcomes, 1991). Pursuing such laudable objectives requires advocacy by local, state, and national coalitions of individuals with disabilities, family members. and professionals. Unfortunately, as Braddock (l994) pointed out, the pace of change is slow and the transition to an institution~freesociety is taking many years in most 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 supports for persons with disabilities. (p. 246) Empowerment refers to an ongoing process of gaining greater access and control over val~ ued resources through critical reflection and group participation centered at the local com~ munity (Cornell Empowerment Group, 1989). Although the construct of empowerment has become widely used, little empirical evidence is 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 developmental phases for individuals involved in empowerment activities: entry (initial step of getting involved), advancement (the person belongs to an organization and receives mentoring), incor~ porarion (a sense of mastery and competence is gradually acquiredL and commitment (the person develops a sense of mastery and participatory competence). Kieffer's taxonomy suggests that empowerment implies the transition from a sense of self as helpless victim to a sense of self as assertive and efficacious citizen. How~ ever, acquiring a "sense of empowerment" is not enough. The process has to be linked to con~ Mental Retardation, December 1996 341 crete actions and outcomes in order to make a real impact in people's lives. In recent years, several advocacy training programs have been developed to enhance the empowerment of people with disabilities and their 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 program designed to increase involvement in advocacy actions and outcomes of consumers, family members, and/or board members from four Independent 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 117 outcomes (range = 13 to 40) in areas such as removal of barriers for physical accessibilitYi community education; and changes in policy, services, and budget allocations. Wieck and her colleagues have developed a program called Partners in Policymaking to involve and empower people with developmen~ tal disabilities and their families in the policy arena (Wieck & Skarnulis, 1988). In this program, individuals with disabilities and family members are introduced to national leaders in disability policy, advocacy, and state~of~the-art services for individuals with developmental disabilities. Zirpoli, Hancox, Wieck, and Skarnulis (1989) published the first evaluation of the impacts of the Partners in Policymaking approach with encouraging results. However, because there were no baseline data on partici~ pants' advocacy activities, Zirpoli et at. could not compare participants' changes in perfor~ mance levels as a result of the training. This omission in reporting also precluded any analysis of whether baseline differences in advocacy activity affected participants' reaction to and benefit from the advocacy training. A 5~year follow-up survey of Partners in Policymaking participants suggests continued involvement in advocacy activities by program graduates (Zirpoli, Wieck, Hancox, & Skarnulis, 1994). However, only the percentage of individuals involved 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 respond to advocacy training. As a result, several im~ portant questions have not been addressed: Do all participants benefit equally from advocacy training, regardless of their prior experience as advocates? Are the most experienced individu~ als likely to reach a ceiling in their performance, or do they benefit the most because they can put more of their energy into advocacy action more quickly than can their less experienced counterparts? Do the individuals with less ad~ vocacy experience improve the most? After all, they have the most room for improvement and new opportunities. Hancox and Vivona (1990) recommended that individuals with no current involvement in advocacy organizations be given priority to participate in the Partners in Policymaking program. On the other hand, their lack of background experience may make it more difficult for them to take action. No one to date has examined whether prior advocacy experience makes a difference in the subsequent benefits of participating in advocacy training in developmental disabilities. Moreover, if such differences exist, what are they and what are their implications for our understanding of em~