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Parents As Change Agents in Their Schools and Communities: the Founding of Families for Early Autism Treatment (FEAT)

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Parents As Change Agents in Their Schools and Communities: the Founding of Families for Early Autism Treatment (FEAT) University of Denver Digital Commons @ DU Electronic Theses and Dissertations Graduate Studies 1-1-2010 Parents as Change Agents in Their Schools and Communities: The Founding of Families for Early Autism Treatment (FEAT) Bethany Kristin Mickahail University of Denver Follow this and additional works at: https://digitalcommons.du.edu/etd Part of the Disability and Equity in Education Commons, Education Policy Commons, Oral History Commons, and the Special Education and Teaching Commons Recommended Citation Mickahail, Bethany Kristin, "Parents as Change Agents in Their Schools and Communities: The Founding of Families for Early Autism Treatment (FEAT)" (2010). Electronic Theses and Dissertations. 426. https://digitalcommons.du.edu/etd/426 This Dissertation is brought to you for free and open access by the Graduate Studies at Digital Commons @ DU. It has been accepted for inclusion in Electronic Theses and Dissertations by an authorized administrator of Digital Commons @ DU. For more information, please contact [email protected],[email protected]. PARENTS AS CHANGE AGENTS IN THEIR SCHOOLS AND COMMUNITIES: THE FOUNDING OF FAMILIES FOR EARLY AUTISM TREATMENT (FEAT) ________ A Dissertation Presented to the Morgridge College of Education University of Denver ________ In Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy ________ by Bethany K. Mickahail June 2010 Advisor: Dr. Ellie Katz Author: Bethany K. Mickahail Title: PARENTS AS CHANGE AGENTS IN THEIR SCHOOLS AND COMMUNITIES: THE FOUNDING OF FAMILIES FOR EARLY AUTISM TREATMENT (FEAT) Advisor: Dr. Ellie Katz Degree Date: June 2010 Abstract A qualitative research highlights how parent driven “communities of support” create lasting change in schools and communities, through the unique blend of the two methodologies, oral history and educational criticism and connoisseurship. In recent years, schools and communities are unusually impacted by an escalating wave in the diagnosis and treatment of persons with Autism. In 2010, the Center for Disease Control’s Report stated 1 in 110 U.S. children are diagnosed with Autism. Yet long before this official report, parents and professionals affected by Autism and other disabilities were busy during the last half of the 20 th century, seeking out ways to treat, cure and increase the quality of the children’s lives. They were part of the disability advocacy movement that forged legislation in special education, pre-school early identification/education and pioneering therapeutic treatments. Among these pioneering early groups in the Autism community, are the parents and professionals who founded FEAT (Families for Early Autism Treatment), in 1994. Their intent was to promote high quality school programs and services for children with Autism. Their creative efforts serve as a model for parents of children with disabilities everywhere. Through perseverance and concerted action, they channeled their personal ii loss and grief into a positive force, creating a community of support advocating for change in their schools and community. This research discovers valuable information about parent organization efforts, perspectives of FEAT’s strategies, along with practical applications for a model which may be useful for other parent organizations seeking to change their schools and communities. A hybrid research methodology was implemented. Building on the qualitative design of oral history; this research records and interprets living disability rights history. Utilizing Eisner’s educational criticism and connoisseurship, it also illuminates research results with an enlightened pen, through poetic representation. These two qualitative methodologies, oral history and educational criticism and connoisseurship, guide the data collection, analysis, interpretation, and literary presentation of this research. The parents and professionals, as the five founders of FEAT were interviewed three times and tape- recorded. The tapes were transcribed, studied, analyzed and poetic representations of their personal insights were written and displayed. Answers to the research questions were gleaned through analysis, highlighting the founders' challenges, resources, the impact of their efforts, and a detailed list of recommendations for other parents, community leaders and educators. Through the technique of educational criticism and connoisseurship, research findings were further analyzed. The themes emerging from this study are: direction for advocacy, building for change and impact of legacy. The founders' insights and iii perspectives of their life experiences provided study implications focusing on the autism related issues of urgency, advocacy, effective treatment, public awareness, research, policy planning and communities of support. Resulting recommendations hold significance for those who work with and advocate for persons with autism and/or for those who make policies that guide autism research, services and programs. iv ©Copyright by Bethany K. Mickahail 2010 All Rights Reserved v Acknowledgements Open minds, open hearts which open doors, and open up once unopened roads to unopened lives. - B.K. Mickahail In contemplating who to acknowledge for their contribution to this research, I must first express sincere gratitude to the FEAT founders, those who have spent years of personal toil and self sacrifice as “pioneers” in the wilderness of advocacy for children with Autism. Without their efforts and life stories I would have no topic to drive my research. Special thanks are extended to my dear friends and family; to my loving husband Al who always expressed enthusiasm for my work, my daughter Kristina who along with my friend Gail Reiger served as an extra pair of eyes and ears to ensure the manuscript’s accuracy. Acknowledgements must be made to my committee members; to my advisor, Dr. Ellie Katz, who’s gentle encouragement and interest in the topic facilitated the completion of this work, and Dr. Bruce Uhrmacher, Dr. Nick Cutforth and Dr. Roger Salters, for their valuable guidance. I dedicate this work to my wonderful husband and children and the beloved memory of my late mother, Dr. Beverly Malmstad. Lastly, I express gratitude for my effervescent son, Dimitrius, who is my daily inspiration to do justice, love mercy, walk humbly and give thanks (Micah 6:8, Psalm 28:7). vi Table of Contents Abstract ............................................................................................................................... ii Acknowledgements ............................................................................................................ vi Table of Contents ............................................................................................................. vii Chapter One: Introduction to the Study ...............................................................................1 Significance of the Study .........................................................................................3 Purpose of the Study ................................................................................................4 Research Questions Guiding the Study....................................................................5 Overview of the Literature .......................................................................................6 Overview of the Research Method ..........................................................................8 Organization of Research Project ..........................................................................10 Definition of Terms................................................................................................13 Chapter Two: Literature Review .......................................................................................15 Overview ................................................................................................................15 The Who of Change: Parental Involvement ...........................................................18 Paradigm Shift............................................................................................23 Parents as Community Organizers .............................................................26 Parents as Change Agents: The Ultimate Stakeholders .............................26 Impact of Parent Involvement ....................................................................28 Parent Leadership Models ..........................................................................30 Partners in Policy Making ..........................................................................31 The Council of Parent Attorneys and Advocates (COPAA) ......................31 The What of Change: Pioneering Efforts ...............................................................33 Early Advocates for Special Services in Public Schools ...........................33 Advocacy and Legislation in the Disability Movement.............................34 Summary of the Literature on Parents as Change Agents .........................35 The Why of Change: Autism and its Rapid Increase—A New Health Crisis? .......................................................................................................36 Recent Legislative Efforts for Autism Research........................................38 The Children’s Health Act of 2000 ............................................................40 The Combating Autism Acts of 2005 and 2006 ........................................40 A Brief History of FEAT ...........................................................................42
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