Presidential Address, 2015--Making a Difference Through Research, Practice, and Policy.

03Original abstract

It is with great pleasure that I address my fellow members of the American Association on Intellectual and Developmental Disabilities (AAIDD). This audience contains mentors, colleagues, existing and emerging leaders at your agencies and universities, self-advocates, and the future leaders of AAIDD. As is often the case when one is asked to give remarks, the immediate thought is: What can I say that is meaningful and helpful to others? So, I'll begin at the beginning and give some insight into my leadership path. One question students often ask me at the University of Kansas is: How did your career in disability research begin? My career within this field began in general education. I earned a degree in elementary education at the Pennsylvania State University and received teacher certification right around the time that landmark legislation was signed in 1975 providing support for instruction and inclusion of individuals with disabilities in public schools. As special education in the public schools began and evolved into the system of services we have today, I raised a family of three children while taking disability-related classes in reading disorders and cognitive disabilities at universities in New York and Texas.As current special education began with the Education for All Handicapped Children Act, enacted in 1975, and most recently evolved through the Individuals With Disabilities Education Act (IDEA, 2004), so did my perspectives on disability-related services. I also met Michael Wehmeyer, a fellow doctoral student at the University of Texas at Dallas, who is a beacon in the field of disability and self-determination and a mentor to many, including me and our colleague, Karrie Shogren, regarding research and effective practice. Mike also introduced me to AAIDD as a professional home. Following my work in early intervention—birth to age 3 services in family homes and a few years as a researcher at The Arc of the United States—I settled into the role of research professor at the University of Kansas in Lawrence, working primarily to address the gaps in research for individuals with disabilities.Another milestone in policy legislation that spans many of our careers is this year's 25th anniversary of the Americans With Disability Act (ADA), signed in 1990 by President George H. W. Bush. This momentous anniversary of the original legislation will also help me center my remarks on what has happened in the years since 1990, both within our organization and in the field of disability research, policy, and practice.The 2015 AAIDD conference theme, Making a Difference Through Research, Practice, and Policy, was well illustrated through the conference's first two plenary sessions. Steve Warren talked about research; Robin Jones told us about the policy and practice outcomes of the 1990 ADA legislation for people with intellectual and developmental disabilities (IDD); and Michael Wehmeyer outlined how practice in the disability field has evolved in recent years through a focus on strengths rather than emphasizing needs, although, in some ways, we are still operating much like the 1980s in terms of disability supports. During the second plenary meeting, we heard about some of the next big ideas within employment from William Kiernan, community living from Amy Hewitt, education from Susan Copeland, and health care from David O'Hara. We want to thank all the speakers who brought their energy, ideas, and expertise to this 139th meeting of AAIDD. Our strength is in our varied, but focused, points of view, with perspectives aimed toward support for people with IDD.The definition of research involves an active search. So, when we talk about research, it's essentially a study of a subject, field, or problem, undertaken to discover facts or principles. Another aspect of our conference theme, practice, is something we do, what we perform, and how we manage actions. The word “practice” in the context of my remarks concerns the activities and best practices that we use in schools, agencies, homes, and the community to support individuals with IDD. Practice depicts how we interact on a daily basis to bring about positive outcomes in the lives of people with IDD.Our field has benefitted from the work of the National Implementation Research Network (NIRN), at Frank Porter Graham, University of North Carolina, Chapel Hill on effective implementation within practice. Founded by Dean Fixsen and Karen Blasé, this center conducts research on implementation of practices in real-world situations and continues to provide guidance and support for knowledge transfer and taking research-based practices to scale, in settings where other things are happening and ongoing daily activities continue to occur. The idea of taking a program to scale has been part of the U.S. Institute of Education Sciences (IES) research program for the last several years, in that one can work on a Goal Two Development grant, create an intervention that is feasible and socially valid, and gather initial proof that the work is effective. Then, if funded to pursue a Goal Three grant cycle, one can take the intervention to scale to prove the intervention is robust enough to be carried out in varied places and with individuals who need and will benefit from such supports and intervention.Fidelity of implementation is extremely important, especially when one must turn over implementation to a number of other people who may not be as well-trained or as informed as the originators of the intervention. For example, Salyers, Becker, Drake, Torrey, and Wyzik (2004) reported a study of supported employment that yielded differential intervention effects for groups of individuals with disabilities. When results were grouped by low and high fidelity of implementation (the degree to which the interveners carried out the program as designed), only 40% of adults were employed in the low-fidelity cluster, as opposed to over 90% of adults within high-fidelity implementation sites. According to the authors, who were affiliated with the National Implementation Research Center, the programs were identical in nature except for the degree of fidelity of implementation of the training and intervention plan. How one implements a structured program or service is important—fidelity of implementation makes a difference.Research and practice often intersect. When innovative practices are identified, developed, and piloted, researchers look for ways to share information, strategies, and best practice. People involved in delivering best practice often consult with researchers to determine how to measure outcomes of practice. Another thing to consider regarding practice is the term “evidence-based practice,” which involves a body of scientific knowledge about treatments, prevention, intervention approaches, services, and practices; is research-based, structured, and manualized; and is tested via randomized trials with experimental and control conditions used to establish causation and access magnitude of effects. Socially significant outcomes are attained by using effective innovations, implemented effectively in enabling contexts (NIRN, n.d.).As researchers, we see value in conducting studies in applied settings so we can translate research into practice. We can also work to build unselfish collaboration and partnership between groups of researchers, as well as to employ multidisciplinary perspectives, such as education, social work, psychology, philosophy, and medical communities, to generate important ideas for applied research. Not only are research partners important, but we must pay attention to the context in which we work. One other mission of established researchers should be to mentor young researchers and support staff during the research process.As we consider practice, when does an intervention bridge the gap between efficacy and effectiveness? An efficacious intervention yields outcomes under ideal conditions, with high fidelity, using well-trained staff (Hoagwood, Burns, Kiser, Ringeisen, & Schoenwald, 2001). In contrast, an effective intervention yields socially valid outcomes within typical conditions—even when the researchers are not monitoring training and implementation (Shoenwald & Hoagwood, 2001). So, as a researcher, the best outcome for effective work is to be able to take the intervention to scale in multiple locations under normal conditions of everyday activities within appropriate contexts that adopt the activities into typical practice.I've spent a number of years in the recent past working with my colleagues in early childhood to promote fully inclusive services for young children with disabilities in preschool classrooms, emphasizing access to the same general education curriculum and activities that other children experience. You may say, well, that's easy—the children are young, teachers won't mind, things are pretty available, and people can learn how to do this. However, that was certainly not the case. In fact, our team of early educators spent considerable time working through conflicting and confusing issues that often vex the best of us to come up with the ultimate framework involving choice for teachers in how to implement a curriculum framework that provides planning via Universal Design for Learning and the availability and ability to use challenging curriculum content, such as mathematics, science, literacy, and social skills, integrated into a coherent and comprehensive curriculum model. Getting teachers to agree that children with disabilities can be part of such an endeavor was another barrier. Some teachers agreed it could be accomplished, others were willing to try but were skeptical of it working, and still others refused to pursue the idea to completion.In my experience as a research partner in schools and other settings, when someone mentions that they don't have time—that the paperwork demands are too high or that we need more training (to do something that is more akin to a change in attitude) or that they are not permitted to do it by a supervisor, who we have contacted in advance and is in agreement—we realize that this will be an uphill battle to accomplish very little. In your workplaces, what sorts of attitudinal changes are involved when you bring in new, refreshing ideas and the same sort of barriers are raised? In order to move forward, we need to make our case for change and work with those who are willing to show others that it is possible.Policy is a set of basic principles and associated guidelines—guidelines that we have been involved with at AAIDD for some time and will continue to be involved in as the years pass. In order to discuss policy, I asked my friend, former colleague at the Beach Center and past president of AAIDD, Rud Turnbull, to provide his view on policy:In private conversation with Mr. Turnbull, he reiterated that, in some ways, we have succeeded in getting a number of policies and practices in place, but somehow don't know what to do with our success. Although we espouse equality, this does not always result in the same treatment for all.To further discuss linkages among research, practice, and policy, a social policy report distributed by the Society for Research in Child Development (Supplee & Metz, 2015) elaborates on the state of the art. Although since 2010 the federal has in programs and grant for children and must programs that are and the of the in We not only need to use to gather to study implementation of but must also use this to in policy, especially in the scientific We must with a of as well as about and if we are to support effective and working within the of research, policy, and practice must about the and of all the in the system to determine what supports or to context and are to scale up and Research, practice, and policy must to advance the inclusion of individuals with in schools, communities, and around the order to build a research one must have a idea for research; and pursue the idea to a and make a case for the a research team a and outcomes and to advance the field or a problem, feasible knowledge and and to scale a socially valid intervention. I will our work in self-determination and that of others in community of and social that has to practice in the field of IDD. Our research team at the Beach Center on Disability and the Kansas University Center for in Developmental Disabilities has been supported self-determination as a of research for the last at The Arc of the United in the early Michael Wehmeyer and his team of researchers the of self-determination as an of this into many of including to & Wehmeyer, & services & employment access to the general education curriculum Wehmeyer, & most supported in of & Wehmeyer, and supported and through a of for students to via the Learning of & a for teachers to use in students to set a a to that and the or used this with results from & Wehmeyer, to to by involving the who is the in his or and with and toward by barriers and an for also work on self-determination as a that has in early where and other adults set the for and for young children with disabilities the varied that schools, as of services, about a and it a of time and on the part of all for to be able to that they their to be as they move into How can we help to build the of and in through effective and children do not have the is it for to be fully but they can begin to move through their lives with the support of the and the the context for effective of self-determination as in that through and using if and by providing for using one to outcomes Wehmeyer, & in as a so that if someone has and support to make and and set and they can be The work of Wehmeyer and colleagues has the initial research on self-determination and to to all of self-determination into a number of activities such as community and social result of living a in the community and of your choice will be an of of The work of and others in this of research, practice, and policy has the and of people with to experience the of & Hewitt, AAIDD for adults to in the working at for and of Through the research, practice, and policy work of the Research and Center on we have a much and for adults to be involved in their with supports and services. a number of that to community social is also Although are a of of social is an that social at a set of and social & One can have for individuals to be a part of communities, and we must up the ideas to support individuals to about the that we can support people with to be more fully involved in the lives of people around social in very want to thank and Rud for their and experience with us through We have also been to have with us during the 2015 conference in we can as groups of researchers, and individuals is to and our are within research, social policy, and work. 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This of leadership and on of individuals with as a of positive outcomes that when groups work through barriers to make of the is to his people from where they are to where they have not We at AAIDD, both and could take this and the of of where has that we have to move out of our and change for the of the people we know or will know with who than Mike 1980s of many of our services and supports. 2015 and time to move an organization and as in the active of research, practice, and policy, we are still for the best to to and his colleagues, in the or by the on or the of as a of the & Although much and practice is by the a of to the future as a of and is and what we should be within AAIDD as a current of thought to move us into the We are to have as our of AAIDD. is a professional in the disability field in and us extremely well within our and organization by and the future for of the current and activities of the We have an past at years, but also need to take regarding the is a organization that has in the medical and with in of We a with many of at the state and with a of special we are best by a more that on and community inclusion in work, living and social within settings where is We do not focus on a we out to other and in for the benefit of people with and work to a of to the the but of past and barriers to will benefit not only the the AAIDD but also individuals with and their family of family I want to thank my for all his and help the is my with our children and you for your attention I want to my remarks with to all of you who have been involved in getting up early to with special groups and and AAIDD through your work as in the of research, practice, and

Intellectual and developmental disabilities, 2015 · doi:10.1352/1934-9556-53.6.430