Empowered Voices: Applying Self-Determination to Disability Advocacy

The strength of Public Health Advocacy: Creating Community Change is that it provides a blueprint for advocacy groups to take up and utilize. There are concrete action plans for every step. For this question, I want to look at an actual case. This year, the state of Illinois announced that “The Department of Human Services is planning to make cuts to the amount of hours it covers for care of the developmentally disabled. Service providers across the state are bracing for an 8.7 percent reduction in hours covered by the state” (Henke). Cuts in the I/DD system would be detrimental to all stakeholders. The people being served would have fewer supports, the agencies and organizations serving those people, the families and loved ones of people who rely on the system, and finally the communities at the local and state levels who rely on the diversity of people in their communities to be thriving places.

There has already been advocacy in this specific space, as all the stakeholders understand the harmful nature of these cuts. I want to use a different author that we read as a jumping off point. In “Self-Determination and the Empowerment of People with Disabilities,”  Michael Wehmeyer introduces the Self-Determined Career Development Model. In this model, the goal is to enable VR customers to engage in a self-regulated problem solving and goal setting process leading to job placement. It is a three-phase process, with each phase presenting a problem the student must solve through a series of questions. In the model, students learn the questions and make them their own. They are linked to a set of objectives. They contain educational support to help the goal of enabling students in self-directed learning for areas like problem solving, choice making, self-evaluation, and self-monitoring (Wehmeyer 26-9). The emphasis here is that even though I am adapting the framework from Altman et al, I am creating a model that works towards the empowerment of the stakeholders as they pick up the ball and run with it on their own.

A model for advocacy at the high level.

First, we find the vision. At its most basic, the vision is why the group exists expressing what we want, what the problem is, and hope for the future  (2-4). In our situation, we can imagine that the vision for our group is to restore the funding that is at risk of being stripped away. Or we want to go bigger and have a more equal and just society with the restoration of funding just a short-term goal. Either way, this vision is the foundation from which we are working for.

Next, we move from being just one person to finding a group of people concerned about this issue. It could be direct stakeholders, from participants and family members to members of the larger community. Altman emphasizes that “One of the most important principles of community health advocacy is that you should include many representatives of the community in your efforts-not just members of a small clique” (8). Part of this group formation process is in finding and supporting leaders. These leaders of the group are important as they will drive a lot of the group energy through their action, and work toward keeping the group together and focused.

Once your group is together, the next step is to understand the issue at hand. In our example, these cuts are not happening in a vacuum. There are competing claims on the state resources that may have necessitated these cuts in funding in the immediate term. There are also larger structural issues where the past forty years of neoliberalism have made it politically hard to devote resources to the less well off, even in “blue” states like Illinois. The more that our group knows about the context of the cuts from every angle, and the deeper the understanding, the more effective our advocacy will be (15). Once we start to understand the full context, we will be able to see where the potential levers of change are. In our case, there is an existing power structure that goes from the providers to the state agency to the legislators to the governor himself. By looking at this power structure, we can find the “points of intervention” (24) that will make change possible. At this point we are ready to start thinking about how we make the change, and Altman et al list twenty points of etiquette for keeping the right path on our advocacy journey and not getting stuck in the mud and making sure our group makes a good impression (26-36).

Now that we know the issue we are dealing with at all levels, we can start to make plans. We have our vision and a mission, and an idea of what we want to happen. The next step is to identify short- and medium-term objectives (38). For our group, it can be the restoration of the funding cuts in the short term to a larger goal of moving Illinois to the middle of the pack in terms of its per capita funding. Here we start thinking about the strategies we want to use and the targets of those strategies (39), as well as potential action steps.

The next step moves from this higher-level purposeful thought to thinking about how we are going to go about our business. We have these short- and longer-term goals. But we need a strategy, which can contain such “approaches as advocacy, coalition building, community development, coordination, education, networking, public awareness, and policy or legislative change” (52). With high level strategy in place, we can move forward with thinking about specific tactics we want to adopt. Altman and his coauthors suggest six guiding principles for the chosen tactics. They boil down to being present and remaining engaged, and being generous with your opponents, while remaining relentless and honest to your cause and the facts (60). There are a lot of options here for our group. Do the stakeholders want to work in the background, contacting sympathetic legislator? How extreme do we want to be? What sorts of actions are on the table, and which are off that table? Altman lists different tactics in the realms of research and investigations; encouragement and education; direct action in making our presence felt; direct action in mobilizing public support; direct action in using the system; and direct action in “getting serious”   (63-80). It is important to note that we should not get too tied up in any individual tactic, as what we are here is to achieve the objectives in our goals. We have to remember that the opposition that we have identified as the points of leverage to make change are also  people. They have their own goals and tactics, though they may not be as well articulated. We need to remember that this is a process of push and pull in an ongoing relationship. The people at the points of leverage may welcome our ideas, they may oppose them, or they may be downright resistant (93). What is important is to remember that this is a dynamic process, and every thrust and parry is met with a reaction from the other side. We can anticipate these and make sure we know where our opponents are coming from so we can counter their moves even before they make them. This is why the research at the beginning is so important – we fully understand the context of the situation. Through this path, we win.

Again, I want to emphasize that this model is just at the high level. If I were working with a group of stakeholders as in our hypothetical situation, I would point them to the work of Altman et al as it is a very convenient step-by-step outline. This fits in the with Wehmeyer Self-Determination model as they take ownership of the process. Specifically, I would have this group focus on the worksheets that are in the text from pages forty-four to fifty-one. These worksheets can really help a group find focus by answering journalistic questions like “Who are we?”, “What are we doing?”, “When do we want to see it happen?", and “How are we going to make the change happen?”. By having this framework available, hopefully our group would be able to move from defining their vision to meeting the goal in the vision through the steps they put to paper.

 

 

 

 

 

Works Cited

 

Altman, David G. Public Health Advocacy: Creating Community Change to Improve Health. Stanford Center for Research in Disease Prevention, 1994.

Freire, Paulo. Pedagogy of the Oppressed: 30th Anniversary Edition. Bloomsbury Academic, 2014.

Henke, Cole. “State to Make Cuts to Care for Developmentally Disabled in Illinois.” WCIA.Com, WCIA.com, 21 Jan. 2024, www.wcia.com/news/state-to-make-cuts-to-care-for-developmentally-disabled/.

Postman, Neil, and Charles Weingartner. Teaching as a Subversive Activity. Penguin Books, 1972.

“Section 11. Organizing Study Circles.” Chapter 31. Conducting Advocacy Research | Section 11. Organizing Study Circles | Main Section | Community Tool Box, ctb.ku.edu/en/table-of-contents/advocacy/advocacy-research/study-circles/main. Accessed 10 Mar. 2024.

Souto-Manning, Mariana. Freire, Teaching, and Learning: Culture Circles across Contexts. Peter Lang, 2010.

Wehmeyer, Michael L. “Self-Determination and the Empowerment of People with Disabilities.” KU ScholarWorks, Council for Exceptional Children, Jan. 2004, kuscholarworks.ku.edu/handle/1808/10942.