The IDD Champions Coalition Community Survey represents more than data collection—it embodies the voices of over 800 families, caregivers, and community members who have courageously shared their experiences to illuminate a path toward meaningful change.
SAN ANTONIO, June 18, 2025 /PRNewswire-PRWeb/ -- In a groundbreaking moment for Bexar County, a powerful coalition of leading nonprofits will publicly release findings from the largest-ever community survey focused on intellectual and developmental disabilities (IDD). The IDD Champions Coalition Community Survey represents more than data collection—it embodies the voices of over 800 families, caregivers, and community members who have courageously shared their experiences to illuminate a path toward meaningful change.
While the survey reveals significant challenges in how families navigate care and support systems, it also demonstrates something remarkable: the strength, resilience, and determination of our community to create solutions together. What emerged from this comprehensive study is not just a catalog of needs, but a blueprint for hope—a roadmap showing exactly where collective action can make the greatest difference.
The Reality We Face, The Future We're Building
The survey findings paint a detailed picture of families managing complex care coordination largely on their own. Half of all families report coordinating care without systemic support, while one-third of caregivers have no respite help at all. The economic impact is profound, with 32% of individuals having left their jobs due to caregiving responsibilities, and over 80% of families lacking a clear plan for their loved one's future care.
The survey doesn't just document problems; it provides the evidence needed to drive systemic change and secure the investments our community deserves. Jenny Hixon, President & CEO of Any Baby Can of Southwest Texas, believes that within these challenges lies tremendous opportunity.
"This is the loudest, clearest call we've heard from families in decades," Hixon said. "Now it's our turn to listen—and lead."
Building Solutions Together
Many caregivers suspected developmental concerns within their child's first year of life, yet experienced frustrating delays in receiving diagnoses and accessing Early Childhood Intervention services.
"Early intervention is not a luxury; it's essential. Delays now cost families everything later," Katrina Campbell, CEO of Brighton Center, said.
The survey also illuminated how families have been holding up an under-resourced system through their determination. Rebecca Helterbrand, CEO of Respite Care of San Antonio, adds that "families have been holding up the system for too long, and this report is our collective promise to do better."
Sandy Ethridge, President of Morgan's MAC (Multi-Assistance Center), added that Morgan's MAC exists to close gaps.
"This data proves we must act faster, and together," Ethridge said.
The challenges intensify as individuals transition to adulthood, where services become even more limited.
"The lack of adult services is staggering," Ellen Shoemaker, Executive Director of Development & Administration at SA Life Academy, said. "It's time to build supports that span the full life course."
From Data to Action
The coalition has identified clear, transformative priorities for action.
"This data gives us a blueprint for change, and shows where the cracks have become chasms," said Dona Kotzur, CEO of The Arc of San Antonio.
The coalition has already moved beyond identifying problems to implementing solutions, with the first endorsed project—a guided, IDD-specific resource directory through SACRD—having secured two-thirds of its required funding.
A Moment of Unprecedented Opportunity
This survey emerges at a unique moment when the Texas Cavaliers have requested input on systemic solutions and major foundations have expressed interest in backing policy reform. The IDD Champions Coalition formed in December 2024 with a shared recognition that families deserved better than navigating a fractured system alone. Now they are actively implementing solutions that demonstrate how community organizations can unite around precise data and shared purpose to create real change.
A Call to Action for Our Entire Community
This research represents an invitation to the entire Bexar County community to join in creating solutions. The data strongly supports local advocacy for increased state investment in IDD services, reduction of Medicaid waiver waitlists, and policy reform to improve caregiver financial support. However, beyond policy change, it requires a cultural shift that acknowledges the contributions of individuals with IDD and respects the expertise of families who have navigated these systems.
Bexar County has a chance to lead in creating more navigable, compassionate, and effective systems for people with IDD and their families. With the SACRD project underway and a growing network of nonprofit stakeholders committed to sustained action, we are poised to build something remarkable together.
The IDD Champions Coalition believes this study be the beginning of a stronger, smarter, and more inclusive future.
About the Coalition: The IDD Champions Coalition includes Any Baby Can of Southwest Texas, Brighton Center, Morgan's MAC (Multi-Assistance Center), Respite Care of San Antonio, SA Life Academy, and The Arc of San Antonio—organizations collectively serving thousands of individuals with IDD and their families throughout Bexar County.
Media Contact
Shannon Hernandez, ABC of Southwest Texas, 1 2103162735, [email protected], https://abcofswtx.org
SOURCE Coalition
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