Projects
Below is a list of the RTC's active projects in the areas of Self-Advocacy and Self-Determination. For more information, see the contact person(s) for each project.

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Numerous approaches have been developed to enhance the self-determination of persons with ID/DD. The majority of these have been targeted at the agency level. Some have been successful in supporting self-determination but relatively less so with persons with more intensive support needs. This investigation will identify and study a set of agencies currently using exemplary practices that effectively support self-determination of persons with a range of ID/DD. Based upon this information, and the results of Study 2.2, a multifaceted self-determination training and technical assistance program will be developed and field-tested in a variety of settings. Evaluation of the program will include consideration of the manner in which a variety of environmental factors and personal characteristics of individuals with ID/DD have an impact upon outcomes in the area of interest.

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The purpose of this project is to learn about the exercise of self-determination among adults with intellectual and/or developmental disabilities (ID/DD) and the specific factors within the environment associated with this outcome. The research activity involves two parts. In the qualitative portion of the study, the experiences and perspectives of 12 individuals with ID/DD served by residential programs engaged in one of three systems level interventions designed to increase consumer self-determination (consumer controlled budgets, person-centered planning, or the Home and Community-Based Waiver) will be investigated using qualitative methodology. One-half of these individuals will be served by organizations whose staff members have received instruction in how to most effectively support self-determination while the other half will be recruited from programs whose staff members have not received such training. In addition, DSPs who support these individuals and family members will serve as sources of information about these experiences. Data collection will consist of semi-structured interviews and participant observation within service settings. The second part of the activity entails a quantitative study of the levels of self-determination experienced by adults with ID/DD being served by residential providers employing one of the aforementioned system-level interventions designed to enhance consumer self-determination. In this part of the activity, 120 adults with ID/DD will be interviewed to ascertain current levels of self-determination and the adequacy of environmental supports. Interviews will be triangulated with a set of scales assessing levels of self-determination completed by a DSP who knows the resident well. All samples for this activity will be drawn in a manner so as to assure diversity within each cell in terms of type and size of residence, extent of intellectual disability, cultural background, and age.

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This project conducts an extensive review of current knowledge and practice in self-determination and full inclusion. This review will involve all RRTC participants, serve as the background papers to a national "state-of-the-science" conference in Year 4, and be published as a second edition to the RRTC's Challenges for a Service System in Transition: Ensuring Quality Community Experiences for Persons with Developmental Disabilities (Hayden & Abery, Eds., 1994).

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This research and development project will employ systematic analysis of specific web-based technology and learning strategies to accommodate relevant impairments to web use associated with ID. It will use ongoing internal and external assessments and refinements to create and refine a model for maximizing website accessibility for persons with ID and related cognitive disabilities (RCD). A model website will be designed and evaluated to establish, field-test, and exemplify features of website design to accommodate ID/RCD. The model will be employed to design and deliver information of high value to persons with ID/RCD by focusing on “self-advocacy.”

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Over the past several years, many important systemic and environmental interventions intended to increase the self-determination of individuals with ID/DD have been implemented. These include: the provision of supports in non-institutional, less tightly regulated settings using the Home and Community-Based (HCBS) waiver; the use of “person-centered” approaches to service planning and delivery; training programs for service staff to enhance their ability to support consumer self-determination, and the use of individualized budgets that allow consumers/family members a voice in deciding on how funding available to support them will be spent. Each of these interventions have particular strengths and drawbacks in supporting self-determination. At this time, however, there is a lack of knowledge as to which of these approaches or combination of approaches best supports self-determination. Using both qualitative and quantitative methodology, this study will evaluate the impact of these each of these for systemic approaches along with a number of micro system level environmental factors on enhancing the self-determination of individuals with ID/DD.

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Assistive technologies can be of enormous value in supporting the abilities of persons with ID/DD to exercise greater control over their personal lives. This study will investigate the use of assistive technology (AT) devices and services by persons with ID/DD. Two projects will be conducted. First, project staff will develop a bibliography summarizing assistive technology devices and potential service use by persons with ID/DD. Second, staff will conduct an in-depth study in five states on the financing of AT devices and services for individuals with ID/DD. This study will provide valuable data on access and financing of AT and will establish the feasibility of mounting a state-by-state analysis investigating resource allocation by the three primary funding sources for assistive technology (Medicaid, public schools, state vocational rehabilitation).

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