Decisions in the I/DD field are only as strong as the data that informs them ? yet emerging leaders often do not have familiarity with national IDD data sources, limiting their ability to use and share data for decision-making in policy, advocacy, and practice. The Data Ambassador Program, a partnership between the State of the States in Intellectual and Developmental Disabilities Project of National Significance and AUCD, was established to address this gap by creating regional cohorts of UCEDD/LEND Trainees trained as Data Ambassadors. By the end of this five-year program, there will be representation in every state and territory, helping to ensure data-informed advocacy reaches underserved communities and territories.

The program is in its third year and is continuing to equip Ambassadors with deep knowledge of local, state, and national Medicaid IDD data and data accessibility. This will prepare them as they advance to leadership positions across disability sectors. Trainees work directly with State of the States data, learning how to translate complex datasets for diverse audiences through trainings and their end-of-program presentation to a Developmental Disability Act partner in their community (UCEDD/LEND, DD Council, or P&A). Ambassadors from the Territories are working to address data gaps within their governments and present their findings to bring attention to this issue. Ambassadors are also widening their network through this presentation and through the wide array of disability experts and advocates who participate as guest speakers during training sessions. This presentation will feature Ambassadors speaking to their experiences in the program-what they have learned, how they have applied their training, and the impact of the program on their professional development. Attendees will gain insights into how this program is equipping emerging leaders in UCEDDs and LENDs to strengthen data knowledge and literacy across the network and further foster collaborations.

This program addresses a critical educational need, advances equity through data accessibility, and invests in emerging leaders from across the country. The program reflects AUCD's core values of collaboration, leadership development, and community-centered practice. Attendees will leave with ideas for integrating national IDD data into their own training, research, and advocacy.

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This session will explore how established autism diagnostic clinics can expand their services to include FASD evaluation. Presenters will share experiences and practical considerations for building on existing clinical expertise to improve access to diagnosis and support.

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This presentation examines caregivers' experiences and perceptions during their children's autism diagnostic journey and explores how these experiences influence caregiver well-being, family dynamics, and access to services. Caregivers play a central role in identifying developmental concerns, navigating evaluations, advocating for supports, and coordinating services for autistic children. Despite their critical role, many caregivers experience substantial emotional, psychological, financial, and systemic challenges throughout the diagnostic process. Understanding these experiences is essential for improving family-centered practices, increasing service accessibility, and promoting equitable outcomes for autistic individuals and their families.

This mixed-methods study was conducted in a southern urban metropolitan area and included both quantitative and qualitative data collection. Participants were recruited through multiple social media outreach channels to encourage diversity in sampling. In the quantitative data, frequently reported barriers included lack of available providers, scheduling difficulties, transportation concerns, and financial strain due to inadequate insurance coverage. Nearly half of participants also reported that healthcare providers did not spend sufficient time addressing their concerns or explaining next steps following diagnosis. Additional findings demonstrated significant employment impacts, including reduced work hours, missed promotions, job loss, and caregivers leaving the workforce entirely to support their child's needs. Qualitative analysis identified several major themes, including service access difficulties, emotional well-being, peer support, self-education, and advocacy. Caregivers described feelings of grief, isolation, stress, frustration, and helplessness throughout the diagnostic process. Many participants emphasized the emotional toll of navigating long waitlists, inconsistent professional guidance, and limited support systems. At the same time, caregivers highlighted the importance of advocacy, community support groups, and connecting with others who shared similar experiences.

This presentation aligns with the values of the AUCD Network by emphasizing family-centered practices, interdisciplinary collaboration, equity, advocacy, and systems-level improvement for individuals with disabilities and their families. Implications for practice include improving communication with caregivers, expanding post-diagnostic supports, increasing accessibility through flexible service delivery models, and integrating caregiver mental health supports into service systems. Participants will gain practical strategies for supporting caregivers across educational, healthcare, and community settings while promoting more compassionate and responsive approaches to autism diagnosis and intervention.

 

The AUCD Network Impact Spotlight session showcases innovative projects, programs, and activities led by AUCD Network members that are advancing outcomes for people with intellectual and developmental disabilities and their families. These brief presentations highlight initiatives from the past year, sharing practical strategies, emerging practices, and lessons learned from across the Network. Presentations feature work from UCEDDs, LEND programs, IDDRCs, and other Network partners, creating opportunities for collaboration and knowledge sharing.

Learn more about the NESTT Clinic