Case Studies in Building Equity Through Family Advocacy in Special Education: A Companion Volume to Meeting Families Where They Are(Disability, Culture, and Equity Series)

You've read the history and the background, now meet the families! This companion book to Meeting Families Where They Are traces the advocacy journeys of 12 caregivers across a range of racial, ethnic, social, disability, economic, and family identities. The stories reflect the unique lives, histories, and needs of each family, as well as the different approaches they employ to meet the needs of their children. Caregivers indicate when they began to advocate; describe how they continue their efforts across schools, medical offices, therapies, communities, and virtual spaces; and discuss how they adapt to changing social and health climates and educational delivery modes. They also share their collective wisdom to assist other parents who are new to the advocacy platform or are feeling discouraged with the process. This is must-reading for family members, teachers, administrators, health care personnel, and everyone invested in creating a culture of respect, love, and understanding.

Book Features:

• Emphasizes how families have resisted the deficit-based view of their children while still utilizing systems of support.
• Identifies gaps and challenges across multiple systems, as well as "what's working."
• Incorporates the fields of special education and disability studies in education.
• Uses the framework of DisCrit to explore how disability and other social identities operate in tandem, examining concepts such as power, access, privilege, and barriers.
• Positions caregivers as experts in their children's lives, illustrating how they advocate for their children, teens, and young adults.
• Takes a deep dive into the nuances of generational, cultural, organizational, and geographical factors that impact how caregivers advocate.
• Resists approaches that typically involve professionals dictating what families need, centering instead on a collaborative model that includes families and professionals.

• Contents (Tentative)
• Introduction
• The Research Process
• A Snapshot of the Families
• Difference, Intersectionality, and Critical Disability Studies (DisCrit)
• Co-Advocacy
• Cases
• 1. Patty: “Even Though She’s His Mom, I Will Never Leave Him”
• Desperately Seeking Support: First Encounters with Professionals and Organizations
• Reasons to Advocate: Minding the Gaps in Every Setting
• A Community That Excludes
• Enacting Advocacy across Multiple Settings
• “People Appeared Out of Nowhere” The Helpers, Supporters and Co-Constructors
• Goals for The Future: “Nobody Does It Like You”
• “Let’s Resolve”: Patty’s Self-Reflections as an Advocate
• Following Up: Observing Patty in Action
• Post-COVID Update
• 2. Jenny: “This is a Family”
• Not Your Typical Medical Foster Home: “This Is a Big Family Setting”
• Views from the Intersection: Disability, Mental Health, Puberty and Transition
• Understanding the Foster Care Linkage: Who are the Allies?
• Nora Revealed: Advocacy and Self-Advocacy in Action
• Post-COVID Frustrations: “It Tore her Apart”
• Reflections of a Caregiver Advocate
• 3. Rhonda: “I Am Her Voice”: Fighting for Respect and a Normalized Adolescence
• “We Just Have to Wait and See”
• High School and Beyond: The IEP—“Just a Piece of Paper”
• Countering Negativity and Poor Communication
• Sisters and Supporters
• Being a Teenager: Creating a Social Life
• Senior Year Advocacy: Let Me Be Brave in My Attempt
• The COVID-19 Pandemic: Virtual Learning as a “Blessing” and a Revelation
• Finding Light at the End of the Tunnel
• Rhonda’s Reflections: The Meaning of Advocacy
• 4. Myra: “I Came With My Books as My Honor and My Weaponry”
• Identity and Disability Intersections
• A “Top-Tier Advocate”
• Advocating for Identification and Services
• An Early Transition
• Advocacy Then and Now: Change within the Status Quo
• 5. Marie: “I Want Him to Have a Voice”
• A Twice-Exceptional Family
• “You Have to Meet this Mom!” Mother Love, Intuition and Seeing the Whole Child
• Enacting Advocacy across Multiple Environments
• “She’s my Backup”: The Supporters, Helpers and Co-Constructors
• The Community Filling in the Gaps
• COVID Follow Up: Restrictions, Racism and “Regular”
• “I’m Not Afraid of Anything”: Reflecting on Her Role as an Advocate
• 6. Ana: “Whatever You Need, I’m On Your Team”
• Social and Cultural Capital: “I Know How to Speak to Them”
• Enacting Advocacy: “Autism is an Expensive Disorder”
• Navigating Community and Social Experiences
• Co-Advocacy: Making the Ideal a Reality
• Following up with the Outcomes of Advocacy
• “My Fear Is Coming Out of It”: COVID-19 and Challenges of Social Distancing
• “I Wouldn’t Have it Any Other Way”: Ana’s Self-Reflections as an Advocate
• 7. Linda: “As a Mom, You Have Those Feelings, and You Do What You Have to Do”
• Engaging With Professionals Before and After Delivery: “It Should be More Reassuring”
• Dismissals and Misunderstandings: “Give Him the Diagnosis That Was Appropriate”
• Advocating Within the Family: Acceptance, Compromising, and Support
• Tony’s Emerging Adolescence: Fitting in or Not?
• Enacting Advocacy
• Knowing Who to Lean on: The Allies of Advocacy
• Post-COVID: “We’ve Really Seen Him Flourish, Believe It or Not, in This Time”
• Reflections: “The Next Day is a New Day”
• 8. Sonia and Zoe: “Different Isn’t the End of the World”
• “Hooray, Giselle”!
• Strong Family Bonds, Strong Family Roles
• Advocacy Allies: Helpers and Supporters Who Made a Difference
• Different Contexts, Different Advocates: The Power of Social Perceptions
• Observation: “There’s No Place Like That Place”
• COVID Follow-Up: “We Got to Do Better”
• Advocacy Reflections
• 9. Carlos and Betty: “It’s Not About Me . . . It’s About Someone Who Needs Me”
• Advocating Before Birth: “He’s Our Son, Of Course We Are Keeping Him”
• Identity, Culture and Disability: A Family Perspective
• Advocating within the Family: Intersections of Disability, Culture, and Socio-Economic Status
• Unexpected Exclusions within the Disability Community
• Allies of Advocacy: “Building Community”
• Observation: “Since I know Him Better Than They Do”
• COVID-19 and Updates
• Advocacy Reflections
• 10. Althea: “We Are Warriors in Ourselves”
• Intersections and Perceptions: Family, Identity and Disability
• First Encounters with Professionals: Dismissal without Diagnosis
• Advocating Across Contexts: Disability and Susceptibility
• Allies of Advocacy
• Returning to the Observation
• COVID-19 and Follow Up
• Speech: “I Had to Make A Stand”
• Advocacy Reflections: “There’s No Voice!”
• 11. Specializing in Human Beings
• What Do Parents Want? Value and Opportunity
• What Makes a Great Advocate?
• What Do Families Need for Their Advocacy to Be Effective? Reciprocity and Equity
• Realistic Expectations But Hope for the Future
• References
• Index
• About the Authors

Lydia Ocasio-Stoutenburg is a lecturer at the University of Miami and advocate for families of children, teens, and adults with disabilities. Beth Harry is a professor emeritus of special education at the University of Miami, and coauthor of Why Are So Many Minority Students in Special Education? Second Edition.

"This book is worthwhile in its own right and could be enjoyed as a supplement to Meeting Families Where They Are."