EXPLORING THE EVERYDAY LIFE INFORMATION NEEDS, PRACTICES, AND CHALLENGES OF EMERGING ADULTS WITH INTELLECTUAL DISABILITIES Dana Hanson-Baldauf A dissertation submitted to the faculty of the University of North Carolina at Chapel Hill in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the Department of School of Information and Library Science Chapel Hill 2013 Approved by: Sandra Hughes-Hassell Claudia Gollop Earle Knowlton George Noblit Brian Sturm UMI Number: 3562908 All rights reserved INFORMATION TO ALL USERS The quality of this reproduction is dependent upon the quality of the copy submitted. In the unlikely event that the author did not send a complete manuscript and there are missing pages, these will be noted. Also, if material had to be removed, a note will indicate the deletion. UMI 3562908 Published by ProQuest LLC (2013). Copyright in the Dissertation held by the Author. Microform Edition © ProQuest LLC. All rights reserved. This work is protected against unauthorized copying under Title 17, United States Code ProQuest LLC. 789 East Eisenhower Parkway P.O. Box 1346 Ann Arbor, MI 48106 - 1346 ABSTRACT DANA HANSON-BALDAUF: Exploring the Everyday Life Information Needs, Practices, and Challenges of Emerging Adults with Intellectual Disabilities (Under the direction of Dr. Sandra Hughes-Hassell) This dissertation research addresses a gap in the library and information science literature on everyday life information (ELI) needs and experiences of emerging adults with intellectual disabilities (I/DD). Emerging adulthood refers to the period between the late teen years and mid-twenties. Although this is a period of significant change for all young people, for individuals with I/DD this life stage is recognized as one of the most stressful times of life. The challenges experienced by these individuals suggest considerable areas of information need. This case study research explored the ELI needs, practices, and challenges of four emerging adults with I/DD. Employing a participatory research approach, participants played a central role in the inquiry process by offering time, input, and invitations into their daily lives for observation and study. Data collection methods included semi-structured interviews, participant/non-participant observations, artwork, photography, and document review of IEP and PCP reports. Analyses revealed four rich and multifaceted lives led by individuals exhibiting a wide range of both formidable and whimsical ELI needs. Twenty- nine categories of ELI need were identified, including multiple subcategories. All four participants displayed high motivation and great initiative in their ELI practice as information seekers, consumers, producers, managers, and providers. They also employed a wide range of tools, resources, and strategies to their advantage, despite considerable challenges - inherent and imposed. Barriers inhibiting information access were identified under the ii following categories: intrapersonal, physical, economic, social, and institutional. Results from this study parallel findings from other youth-ELI studies. The need for cognitively accessible information and proactive LIS service was underscored in each case study as a necessary mean toward supporting the developmental processes of emerging adults with I/DD and the development of knowledge, skills, and dispositions for self-actualization and enhanced adult life outcomes. A person-centered, outcomes-oriented model for LIS research and practice is proposed with emphasis on a strengths-based approach that capitalizes on individual capabilities, interests, and life priorities in recognition of the whole person. Five target areas are identified for LIS attention: individual capacity building, social capital, developmental processes, quality of life, and enabling environments. iii In loving memory of my dad, David Allen Hanson. iv ACKNOWLEDGEMENTS This dissertation research project would not have been possible without the support of many people: First, I would like to express my deepest appreciation to my advisor, Dr. Sandra Hughes- Hassell for her wise guidance, constant encouragement, endless support, and kind patience. It’s been a long road, Sandra! You’ve pushed me to dive deeper, to reflect longer, and to trust my voice. I’ll never be able to adequately express my sincere gratitude for all you’ve done. You are an amazing individual and I am better for traveling this journey with you. To my committee members, including Dr. Claudia Gollop, Dr. Earle Knowlton, Dr. George Noblit, Dr. Brian Sturm, and Dr. Deborah Barreau – For all of your advice, input, time, kindness, and encouragement, I am so very appreciative. Many, many thanks. To Rich - Thank you for being here - each and every day. I am blessed to share this life with you. Bring on the rainbows and unicorns! I love you. To Grace and Madi - You are constant reminders of what’s important in life. I am endlessly awed by the beautiful and unique gifts you bring to the world each day. Above all, I am most proud to be Mom. You are my sunshine and I love you both more than you will ever know. To my mom, Sharon Hanson - I’ve gained so much from your examples of love, strength, compassion, and generosity. You are an incredible woman and you’ve given so much of yourself to support me in this endeavor. I am so appreciative of everything, Mom. I love v you! Hey guess what? I’m done! To Eric Hanson, Kristen Martinez Hanson, and Julie Hanson - You’ve been there from the very beginning - always with love, encouragement, and fun. This W.P. could not ask for better big sibs. I love you. To Amy Smoker - For the laughs, tears, cheers, and miles - thank you. Your friendship means the world to me. To Songphan Choemprayong, Meredith Weiss, Carolyn Hank, Terrell Russell, and Ericka Patillo – For your friendship, support, and the laughs. You’ve made this long haul much fun and I am grateful for the wonderful memories and the continued friendships. To SILS – A wonderful place with even more wonderful people. Thank you for everything. To my family participants - Thank you for opening your lives and for trusting me with your stories. I am humbled and forever indebted. To Jack, Marie, Ben, and Bella – You are amazing individuals and I could not have done this without you. Thank you for your partnership and for brightening my world. To Dad - You made me believe. I miss you every day. vi TABLE OF CONTENTS Chapter 1 Introduction ...........................................................................................................1 1.1 Problem Statement ...................................................................................................2 1.2 Aim of Study ............................................................................................................5 1.3 Research Questions ..................................................................................................5 1.4 Glossary of Key Terms ............................................................................................7 Chapter 2 Intellectual/Developmental Disabilities ................................................................9 2.1 Intellectual Disability: Definition ...........................................................................9 2.2 Developmental Disability: Definition ......................................................................9 2.3 Assessment and Identification ...............................................................................10 2.3.1 Intelligence assessments. ...........................................................................11 2.3.2 Adaptive behavior assessments..................................................................11 2.3.3 Assumptions. ..............................................................................................12 2.4 Prevalence and Etiological Origins ........................................................................12 2.5 The Construct of “Disability” ................................................................................13 Chapter 3 Intellectual Disability in Society .........................................................................16 3.1 A Historical Perspective ........................................................................................16 3.2 Quality of Life and Adult Life Outcomes ..............................................................20 3.2.1 Employment. ..............................................................................................23 3.2.2 Socio-economic status. ..............................................................................24 3.2.3 Housing options. ........................................................................................24 vii 3.2.4 Physical health. ..........................................................................................25 3.2.5 Sex and sexual health. ................................................................................26 3.2.6 Victimization..............................................................................................26 3.2.7 Social-emotional health. ............................................................................26 3.2.8 Community mobility. .................................................................................27 Chapter 4 Intellectual Disability and the Teen Years ..........................................................29 4.1 Adolescent Development .......................................................................................29