Cancelled: Building Bridges: Transforming Care for Children & Youth with Special Health Care Needs through Creative Partnerships in NY State

A multidisciplinary team from the three New York State UCEDDs will describe their multi-year process of providing technical assistance to local Children and Youth with Special Health Care Needs (CYSHCN) Programs. The partnerships between the three UCEDDs and the evolution of the relationships they have cultivated with local CYSHCN Programs will be highlighted. Additionally, results of an evaluation of these efforts will be presented including successes and challenges.

• Download Building Bridges

The Role of UCEDDs in Inclusive Postsecondary Education and State Partnerships: Enhancing Higher Education for Students with Intellectual Disability

Higher education for students with intellectual disability aligns with UCEDD's mission and core functions. Addressing poor transition services and employment outcomes, these programs serve as state models, strengthening relationships with key state partners. Inclusion benefits the entire campus, enriching the community and enhancing learning environments. Four UCEDD directors will discuss their support for these initiatives, highlighting their multifaceted impact.

IDD-TRANSFORM: Centering IDD Voices in Health Research

IDD-TRANSFORM is a collaborative and sustainable partnership between health researchers, adults with intellectual and developmental disabilities (IDD), caregivers, healthcare providers, and IDD community organizations. The mission of IDD-TRANSFORM is to improve health care and health outcomes for adults with IDD by engaging and centering the voices of adults with IDD. IDD-TRANSFORM has partnered with Special Olympics and other community partners to collaborate with 100+ members in the IDD community.

Translational Science Seminar Series Disability as Diversity: Reducing Researcher Roadblocks (D2/R3)

About 25% of adults in the U.S have a disability - just 4% of NIH grants are disability related. People with disabilities (PWD) experience poorer health than their peers. Structural barriers, discrimination, ableism, and exclusion criteria are among the roadblocks to inclusion. "Disability as Diversity: Reducing Researcher Roadblocks" (D2/R3) is a mixed methods study to categorize these roadblocks and test an intervention to mitigate them.

Perspectives on Health Equity in Accessing Long-Term Services and Supports (LTSS) for Individuals with I/DD

Individuals with intellectual and/or developmental disabilities (I/DD) often face challenges when accessing and receiving equitable, person-centered long-term services and supports (LTSS). This panel will discuss the barriers that individuals and their caregivers face across the LTSS delivery system, highlight firsthand experiences from focus group findings, and introduce policy recommendations for creating a more equitable system of care.

• Download Perspectives on Health Equity

Supporting Healthcare Access for Youth with Neurodevelopmental Disabilities

Youth with neurodevelopmental disabilities (NDDs) face significant obstacles accessing health care, contributing to long-term health disparities. This session will describe the first peer-reviewed consensus statement establishing a standard of care in healthcare settings for youth with NDDs, and explore lived experiences and recommendations for implementation from professionals and advocates. Attendees will be engaged to contribute their own perspectives and leverage the presented framework in clinical, research, educational, and advocacy efforts.

State of the States Data Ambassador Program: Data Literacy and Accessibility Training for Emerging Leaders

The State of the States Data Ambassador Program is a partnership between The State of the States in Intellectual and Developmental Disabilities Longitudinal Data Project of National Significance (PNS) and AUCD focused on establishing regional cohorts of UCEDD/LEND Trainees knowledgeable in administrative and national ID/DD data and data accessibility to advance leadership in policy, education, research, and practice. The session will share outcomes from the inaugural cohort of Data Ambassadors.

State Advocacy: How to Leverage Connections with Your State to Influence Change

This session, presented by the Autism Society of America and the Association of People Supporting Employment First (APSE) and the National Down Syndrome Society (NDSS), will focus on state advocacy. Participants will leave with an understanding of how state legislatures operate, what the current scene of disability policy is in the states, and how to work within your network to influence change.

De-Mystifying the PCORI Process: CER and Engagement Awards

Ever wonder what PCORI is looking for in funding applications? Learn from awardees about the application process, contract negotiation, and conduct of Comparative Clinical Effectiveness Research and Engagement Awards projects through completion. Project leaders, including people with lived experience who are members of project teams, will provide insights on their experience and lessons learned. PCORI's IDD portfolio and funding opportunities will be discussed.

• Download AUCD PCORI 2024