Case Studies in Building Equity Through Family Advocacy in Special Education

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. While highlighting gaps and challenges across multiple systems, this book also recognizes “what’s working” with stories of true collaboration between practitioners and everyday people. This guidebook is essential reading for parent advocates, teachers, administrators, physicians, health care personnel, therapists, policymakers, and community members 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.
• 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.
• Shares collective wisdom to assist parents who are new to the advocacy platform or are feeling discouraged with the process.

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.”

—CHOICE

“This must-read volume of case studies presents deeply sympathetic and detailed portraits of 10 families from a spectrum of demographic and cultural identities as they engage in a journey of advocacy for their child with disabilities, vividly illustrating the ineluctable truth of how racism, classism, and ableism intertwine in creating inequitable paths of parent advocacy. While reflective questions at the end of each case study provide a convenient springboard for further discussion, the stories provide compelling evidence for the authors’ argument to move beyond cultural reciprocity towards a more equitable co-construction of advocacy that meets families where they are.”
—Maya Kalyanpur, professor, University of San Diego

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