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INTRODUCTION
This annual report of progress to the Administration on Developmental Disabilities on the activities of the Interdisciplinary Human Development Institute-University Center for Excellence (IHDI) at the University of Kentucky provides a brief administrative history of the program; a description of the foundation values, mission, and approach of the Institute in fulfilling its responsibilities as a University Center for Excellence; and summarizes progress toward the goals of the fourth year of the five-year plan, including summary data for the period of July 1, 2001 through June 30, 2002. It describes IHDI initiatives for systemic change, capacity building, advocacy, and effects of Institute activities on persons with other than developmental disabilities, and how IHDI has contributed to improving access and services to unserved and underserved persons. Additionally, it describes the impact of Federal Policy on the state's ability to address needs of persons with developmental disabilities. An updated description of all IHDI funded projects is provided in Appendix A.
HISTORICAL OVERVIEW OF IHDI
The Interdisciplinary Human Development Institute (IHDI) is the University Center for Excellence in Developmental Disabilities Education, Service, and Research (formerly University Affiliated Programs) in the Commonwealth of Kentucky, and operates as a major, university-wide unit of the University of Kentucky, administered through the office of the Vice President for Research (formerly Research and Graduate Studies). Established in the late sixties (1969), IHDI had its beginnings in UK's Department of Pediatrics, and was known as the Center for the Handicapped. Services initially were center-based around a medical model for training of professionals/students from a variety of disciplines in interdisciplinary approaches to clinical assessment and services. The movement to community services in Kentucky was just beginning, and IHDI began to journey into the field to provide outreach training and technical assistance to these new programs.
In 1978 Dr. Martinson was appointed as IHDI’s director, and the center was administratively relocated to the Graduate School. A vision of its role in the development of a comprehensive and coordinated human service system that could meet the needs of individuals with disabilities and their families in community settings guided the "new" center. The new administrative location allowed IHDI to develop the internal resources and external relationships necessary to be a key player in creating systems change within Kentucky, and to contribute to change at the regional and national level, as well. In 1986, IHDI achieved formal status as an Institute of the University of Kentucky, by action of the UK Board of Trustees.
Building on a strong foundation of positive values about individuals with disabilities and their families, and attracting nationally recognized staff and "bright stars" among Kentucky professionals, IHDI has worked to leverage core funding to develop significant resources from state and federal agencies to implement programs across the life span, and in a broad range of programmatic areas. The Institute has developed collaborative relationships at local, state, regional, and national levels, and has employed the core functions of interdisciplinary training, technical assistance, model demonstrations, information dissemination, and research to bring about systems change. Upon Dr. Martinson’s retirement in January 1998, Mr. Ron Harrison was appointed as Acting Executive Director. In February 2000, Dr. Harold Kleinert was appointed by the university as the new IHDI Executive Director.
OVERVIEW OF IHDI MISSION AND VALUES
The Institute focuses its efforts on the establishment of environments that contribute to the improvement of life opportunities for persons with disabilities and their families. The Institute continues to strengthen its relationships with families and consumers, as well as the direct role that families and consumers play in the guidance and evaluation of the Institute. This was evidenced in the merger of the IHDI Advisory Board and the IHDI Consumer Advisory Council into a single body on December 15, 1998. Under this new structure: 1) the Advisory Council is composed in the majority by individuals with disabilities and family members (with additional places held by heads of key state agencies, as well as a university faculty member, and an IHDI graduate assistant/trainee); and 2) the Chairperson of the Council and two of the three Council offices are held by individuals and/or family members. During this past year, the Advisory Council has actively worked on priorities both for itself and the Institute. Minutes from the Advisory Council meetings of March 4, 2002 and June 3, 2002 are included in Appendix B. Meeting minutes from the September and December 2001 board meetings were included in the Fiscal 2001 Midyear Progress Report, previously submitted to ADD.
As a part of the Institute's efforts to place the needs of individuals with disabilities into the context of the broader issue of societal services and supports for all persons (and the fact that some of those more specific needs can only be addressed within a broader societal perspective), IHDI embarked this past year on an Institute-wide strategic planning process. As a first step, the Institute contracted with the Society for Organizational Learning (SOL) at Massachusetts Institute of Technology (MIT) to provide training to our staff in organizational learning, and to assist us in developing a strategic plan for IHDI’s future. Intensive training sessions were held in August and September of 2001, with Jeff Clanon of MIT acting as our facilitator. IHDI also held separate planning sessions with its Consumer Advisory Council to address the CAC’s vision of IHDI’s future.
A Core Strategic Planning Group and several small work groups have been meeting regularly throughout 2001-2002 to determine how to further develop and implement our strategic plan. Examples of topics being addressed by work groups include:
1) Creating an orientation program for all new employees that provides an introduction to the mission, vision, and an overall description of IHDI.
2) Developing a comprehensive Institute evaluation system that measures the impact of our work.
3) Creating a business plan for IHDI, so that we are seeking funding more proactively, instead of just reacting to calls for proposals.
4) Developing an administrative structure for IHDI that fosters internal and external communication, and further clarifies Institute decision-making.
5) Increasing public awareness of IHDI through communication and public relations to the university and the community as a whole.
The Institute’s strategic planning initiatives included a re-assessment of IHDI’s Mission, Principles and Vision. All IHDI staff contributed to thesenew statements that reflect “the fundamental reasons for the organization’s existence.” As a result, our mission now reads:
To promote the independence, productivity, and inclusion of people with disabilities and their families throughout the life span. We accomplish this through:
· interdisciplinary education,
· research and development,
· information sharing and advocacy, and
· outreach
across the state and nation.
We also reformulated our guiding set of principles. The following principles guide all of our interactions:
· We convey esteem and respect for all individuals;
· We promote individual growth, learning, choices, and self-advocacy;
· We advocate for supports and full access in education, work, recreation, and relationships throughout a person's community;
· We foster creativity, flexibility, collaboration;
· We cultivate both individual and organizational learning; and
· We champion open and responsive communication.
Commitment to human values and a defined vision of purpose drives the mission of IHDI. In keeping with our commitment to capacity building, program activities occur to the greatest degree possible within the structures of state and local agencies having the ongoing service responsibilities and program authorizations, or in the community-at-large, which has a largely untapped capacity to support the needs of individuals with disabilities and their families. Thus, major areas of IHDI activities are not campus-bound or center-based, but take place in the community where people live, work, go to school, receive support services, engage in friendships and relationships, and pursue recreation and leisure activities. Again, the basic thrust of IHDI activities towards the development of both informal and formal community support systems was confirmed by the key priorities identified by the IHDI Consumer Advisory Council in its input to our Core UAP (now University Center for Excellence) Proposal (1998-2003).
ADMINISTRATION/ORGANIZATION
The present administrative placement of IHDI in the Vice President’s Office for Research is particularly critical since that unit has responsibility for research across the major sectors of the University, including the Medical School and Lexington campus. This structure facilitates interdisciplinary collaboration, and is directly supportive of the multiple cooperative relationships with college and departmental administration and faculty required for the successful operation of the University Center for Excellence.
The Executive Director of IHDI is responsible for the direction and administration of the Institute and reports to the UK Vice-President for Research (formerly Vice President for Research and Graduate Studies). IHDI operates on a matrix organizational model that coordinates core functions across programmatic areas. Through its Core Function Directors, IHDI coordinates and develops programmatic, management and policy matters.
The Institute continues to provide pre-service training to both short and long-term trainees across a wide range of disciplines and in coordination with University of Kentucky faculty in the Colleges of Medicine, Social Work, Education, as well as the Departments of Clinical Psychology, and Family Studies. These activities are described in detail in Appendix C.
SYSTEMIC CHANGE
1. How have the major activities/projects of IHDI influenced systemic change in Kentucky, as well as at the national level?
The capacity building mission of IHDI is about systems change. On that basis, all IHDI activities contribute to this effort. Systemic change has to do with influencing policies and legislation, encouraging organizational changes in service systems, or altering attitudes within the developmental disabilities service system as well as the generic service system. The following examples of systemic change highlight accomplishments across IHDI projects and initiatives. For a complete listing of current IHDI projects, see Appendix A.
NEED: There is a broad, national consensus of the need to develop alternate procedures for students with significant disabilities to participate in statewide and local educational assessment and accountability systems (up until the present, nearly all of these students have been excluded from such measures).
Kentucky's Alternate Portfolio has served as the national prototype for the language in the 1997 IDEA Amendments requiring all states to have alternate assessment and accountability systems in place by July 1, 2000. To insure that policy makers and practitioners have access to the technical/content issues that must be addressed in large-scale alternate assessments, IHDI staff have made numerous presentations at national conferences. For example, IHDI staff made presentations on alternate assessments at the 2001 International TASH Conference in November 2001, as well as a presentation at the annual conference for the Association of University Centers on Disabilities (also November 2001), and at the Large-Scale Scale Standards and Assessment Conference (CCSSO) in June, 2002. Another IHDI staff member, Dr. Kenneth Warlick has also been a consultant to the American Institutes for Research and the U. S. Department of Education in the development of an alternate assessment to the National Assessment of Educational Progress (NAEP).
Additionally, four journal articles by IHDI staff on alternate assessment research (Burdette, 2001; Kleinert, 2001; Kleinert, Green, Hurte, Clayton, & Oetinger, 2002; Roeber & Warlick, 2001) have appeared in print during the past year. Two book chapters on the relationship of alternate assessment and the importance of students with significant disabilities in school-wide restructuring and reform (Kearns, Kleinert, Farmer, & Warlick, 2002; Kleinert, Kearns, & Kennedy, 2002) have also appeared. Two additional manuscripts on alternate assessment are currently in press, including a follow-up study on the relationship of post-secondary outcomes to students’ alternate assessment scores (Kleinert et al., in press) and a paper on the essential issues of reliability in alternate assessments (Garrett, Towles, Kleinert, & Kearns, in press).
In related IHDI activities, the Inclusive Large-Scale Standards and Assessment Project (ILSSA) has either direct state contracts, or sub-contracts with Measured Progress, Inc., to assist the following states or provinces with the development and implementation of their alternate assessments: Massachusetts, New York, New Hampshire, New Jersey, South Carolina, Rhode Island, Maine, Illinois, Colorado, Tennessee, Iowa, Washington DC, the US Dept. of Defense and Alberta, Canada. ILSSA’s work with these states and provinces have included such activities as:
1) Assisting each state in drafting Guiding Principles for its respective alternate assessment, including opportunities for parent and student involvement;
2) Assisting each state in drafting Eligibility Guidelines for its alternate assessment;
3) Assisting each state in defining and extending that state’s content learning standards for the alternate assessment;
4) Assisting each state in drafting the initial assessment;
5) Assisting each state in completing its scoring rubric and scoring procedures, as well as each state’s training and reference materials;
6) Assisting each state in pilot testing and refinement of its alternate assessment;
7) Assisting each state with implementation including professional development;
8) Assisting each state with inclusion of scores in accountability systems;
NEED: There is a need to insure that students with disabilities are not only included in the context of large scale educational assessment and accountability measures, but that the measure of their performance is technically adequate, and that our field understands the array of issues that can stem from addressing this important element of IDEA.
The Including Students With Deaf-Blindness in Large Scale Assessment Project has recently completed a survey of state deaf-blind coordinators regarding their perceptions on the implementation of, and their participation in, the development of state large-scale assessments systems. In this national survey, coordinators have responded that IEPs and Section 504 plans frequently discussed the choice of general versus alternate assessments, and that IEPs and 504 plans often listed the accommodations to be used in instruction and assessment. However, only about 50% of the coordinators perceived that students with deaf-blindness in their respective states received the necessary accommodations to participate in their state’s assessment system.
Another set of questions in this survey were related to self-advocacy issues for students with deaf-blindness. State deaf-blind coordinators reported that students with deaf-blindness were frequently socially isolated. Coordinators reported varying scenarios regarding the ability for students to bring their accommodations home, when necessary, and the degree of self-advocacy skills introduced in school.