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One Bexar County parent summed up the frustration felt by so many families navigating intellectual and developmental disability (IDD) services: “Every service, every transition, every single thing that has to be done takes hours and hours on the phone, because nobody answers phones, nobody calls you back.” Another added: “I’ve been bounced between different agencies, and no one seems to know who can help us.”
These parents’ experiences aren’t unique according to a comprehensive community-wide survey revealing that 75% of families can’t access services when they need them. The survey was conducted in spring 2025 by IDD Champions — a coalition of local nonprofits including The Arc of San Antonio, Brighton Center, ABC of Southwest Texas, Morgan’s Multi-Assistance Center, Respite Care of San Antonio and SA Life Academy.
The coalition emerged in the fall of 2024 in response to a shared recognition: families caring for individuals with IDD were navigating a fractured and under-resourced system, mainly on their own.
The findings are stark. The survey of over 800 respondents revealed that families are the system. Parents and caregivers are now acting as full-time care coordinators, managing referrals, appointments, waitlists and services across disconnected agencies.
In fact, nearly half of respondents report that coordination between service providers is ineffective or non-existent, forcing parents into roles they never asked for and aren’t trained to handle.
These aren’t just statistics — they represent real families facing impossible choices. According to the survey, one-third of caregivers have left jobs to manage their loved ones’ care needs, while another quarter have reduced their working hours. The economic ripple effects extend far beyond individual households, impacting our entire regional workforce and economy.
The survey, which drew on principles of Community-Based Participatory Research to center the voices of those most affected, paints a picture of a fragmented system where access depends more on privilege and persistence than need. Long waitlists of 6 to 12 months are standard for therapy, day programs, and medical care. For adults with IDD, rural families and those with complex behavioral or medical needs, services are even more scarce.
Perhaps most troubling, over 80 percent of caregivers report having no clear plan for their loved one’s future adult care. As one parent shared, “After 22, everything just stops. It’s like falling off a cliff.” Another expressed a fear that haunts many families: “I worry about where he’ll live when I’m gone. That keeps me up at night.” These concerns reflect the broader reality that there is a scarcity in services for adults with IDD, and the future is often rooted in fear instead of hope.
The survey also emphasized the urgent need to act sooner. Many children missed opportunities for early supports due to delayed diagnosis and inadequate referrals to Early Childhood Intervention (ECI), despite families often knowing “something was wrong” long before the system responded. Many describe encountering dismissive doctors, insurance denials and outdated protocols that delay crucial evaluations and interventions. When providers, educators, and case managers are trained to recognize early signs of IDD and refer families to services promptly, outcomes improve dramatically.
But this story isn’t just about problems — it’s about solutions and the power of community collaboration. The IDD Champions, with input from the broader IDD community, has identified immediate priorities for the next 3 to 6 months, including partnering with San Antonio Community Resource Directory (SACRD) to launch a guided IDD resource platform.
Additional short-term priorities include sharing findings widely to influence funding, policy, and program design and creating a centralized list of local waitlists organized by service type. These practical tools will help families navigate the system more effectively while broader reforms take shape.
Mid-term goals focus on systemic change: building an IDD Council for ongoing advocacy, creating navigator programs and peer mentorship models for families, expanding ECI awareness and referral systems especially in health care and early education settings and expanding respite and individualized services, particularly for adults.
Long-term priorities include establishing real-time service dashboards, developing countywide coordination infrastructure, investing in early intervention workforce development and family-centered early supports, and advancing adult care planning, supportive housing and caregiver compensation models.
Bexar County has a unique opportunity to lead on this issue. With the SACRD project underway and a growing network of committed nonprofit stakeholders, we’re positioned to build a more navigable, compassionate, and effective system. But lasting change requires more than good intentions — it demands continued investment, authentic family engagement, and cross-sector partnership.
The data presented in this survey urgently supports local advocacy for increased state investment in IDD services, reduction of Medicaid waiver waitlists, and policy reform for better caregiver financial support. It is also a call to action that affirms what many families have been saying for years. The current system is too complex to navigate, too slow to respond, and too fragmented to meet the full spectrum of needs.
Let this study be the beginning, not the end, of building a stronger, smarter, and more inclusive future for people with IDD and their families in Bexar County.
Our community’s most vulnerable residents deserve nothing less than our collective commitment to meaningful, lasting change. We invite you to connect with the coalition organizations and participate in upcoming community conversations to learn how you can contribute to this vital work.
To download a copy of the executive summary and full report click here.
