In Fall 2024, Bexar County nonprofits formed a coalition to address gaps in support for individuals with intellectual and developmental disabilities (IDD), sparked by input from the Texas Cavaliers and interest from a major Texas foundation. In December 2024, key stakeholders, including ABC of Southwest Texas, Brighton Center, Morgan’s Multi-Assistance Center, Respite Care of San Antonio, The Arc of San Antonio, and SA Life Academy, launched a community-centered participatory study to identify immediate needs and long-term priorities for families and individuals with IDD. A comprehensive survey in Spring 2025 gathered over 800 responses from caregivers, educators, and community members.
Some key findings from the study:
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Families, particularly parents and caregivers, serve as full-time coordinators navigating a fragmented system of care for individuals with disabilities.
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Nearly half of families say provider coordination is ineffective, forcing them to manage services across disconnected agencies on their own.
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Developmental concerns are often identified early by caregivers, but diagnosis and support are delayed due to systemic issues and providers dismissing concerns.
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Despite eligibility for Early Childhood Intervention (ECI), many families are not referred promptly, resulting in missed opportunities for early support.
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Access to services such as therapies and medical care is delayed by long waitlists, with access sometimes dependent on geography and socioeconomic status.
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Respite and Individualized Skills and Socialization (ISS) services are drastically under-resourced, leaving one-third of families without any relief.
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Even when eligible, families face barriers like provider shortages and restrictive criteria that prevent them from accessing support.
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Caregiving has serious economic impacts: nearly one-third of caregivers have quit their jobs, and many others reduce hours, leading to financial instability.
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Caregivers frequently receive little to no workplace or public support to accommodate their responsibilities.
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Most families have no concrete future plan for their loved one’s care, facing years-long waitlists and minimal guidance for long-term support.
Read the full article here.