Self-Determination & Self-Advocacy by Karrie A. Shogren, Ph.D.

I was honored to be asked to write for the AAIDD Student and Early Career Professional Group Blog, but also had a bit of anxiety about writing for this forum. To be honest, I’m much more comfortable with writing journal articles and grants; that’s what I have spent most of my career doing. But, a blog requires different ways of presenting information. I start by admitting this to provide some context for what I was asked to write about, the current status of self-determination research and, perhaps more importantly, recommendations for students and early career scholars who are interested in self-determination research. Honestly, I think what we need in the field, and what students and early career scholars can bring to the field, is new and different experiences and ideas; ideas like using a blog to disseminate information. New ideas have potential for advancing the field and creating new and different ways of thinking about research and practice, and advancing the implementation of evidence-based practices and policies.

Self-determination, as an area of research, has significantly grown over the past 30 years. Pioneers in the field developed and established clear lines of research in the early 1990s, changing public and professional understandings of self-determination and the capacity of people with intellectual and developmental disabilities to direct their own lives when provided opportunities and person-directed supports for self-determination. During my career, which began in the early 2000s after the foundation had been laid, we have established evidence-based practices to provide such supports. We have been able to conduct an array of research studies documenting the positive and significant impact that supporting self-determination can have on youth and adults with intellectual and developmental disabilities and the outcomes they experience. However, we also know that despite a number of evidence-based practices to teach and create opportunities for self-determination these practices have not yet permeated school systems, communities, and adult support systems. This is despite research, policy, and practice efforts. So, why is this?

A number of potential reasons exist and are frequently discussed in the literature — systems change is challenging and difficult to sustain, supports for self-determination require different ways of thinking about disability and we are not yet educating and supporting professionals and family members in these ways of thinking, we do not understand how to translate interventions across different context, and so on. But I think, as researchers, we also have to acknowledge that we have not yet gotten creative enough in our efforts to really think about how to engage in reciprocal research to practice and apply implementation evaluation and science to our work. Increasingly technology is creating new and innovative ways to deliver training and ongoing support to professionals and people with disabilities alike, but:

  • Are we capitalizing on this to the degree that we need to permeate systems?
  • Have we created the mechanisms that allow not only for the translation of research to practice, but also scaled-up practice and implementation within large, complex systems?
  • What can we do to study the science of implementation, taking interventions to scale, and sustaining them?
  • How can we more effectively partner with self-advocates, families, and professionals in defining research and practice-based supports that will impact their lives?

Now, basic research, theory development, and the establishment of efficacious practices is still critical. Yet, as applied scientists, this is not our only role.

There is a blue-colored neon light in the photo written as ‘work harder’

We must further consider the science of implementation and what it takes to establish research findings as sustainable practice, if our goal is truly to impact outcomes of people with disabilities and their families. We must both recognize the history of our field and respect and learn from it; but as early career professionals, there is also a need to push the boundaries, to ask new questions, to recognize the current status and growing complexity of systems and practice.

We all need to recognize that things are constantly changing, and students and early career professionals have unique insights about how to address change and create new lines of research and new examples of how to break down the status quo and develop innovative, disruptive solutions to the increasingly complex problems in society. In doing so we have to partner with self-advocates, and establish more cohesive coalitions of all stakeholders.

I encourage novice researchers to not be anxious about the expectations and legacies of the field but to think about how you can innovate and develop and test solutions that work, retaining the valued-based focus of self-determination research, policy, and practice while creating new ways to implement and create systems change that will promote the outcomes we seek — a society where all people, with and without disabilities, have the supports to be self-determined and in charge of their lives, supports, and outcomes.

Karrie A. Shogren, Ph.D. is a Professor in the Department of Special Education, Senior Scientist in the Life Span Institute, and co-Director of the Kansas University Center on Developmental Disabilities. Dr. Shogren’s research focuses on self-determination and systems of support for students with disabilities and she has a specific interest in the multiple, nested contextual factors that impact student outcomes.

Twitter: @KarrieShogren