Lillie Heigl, Director of Policy at the Association of University Centers on Disabilities (AUCD), joins George and Amelia for the season finale of the Voices of the Network series.

Lillie shares a national perspective on disability policy, including recent developments in federal funding and advocacy efforts to protect UCEDDs and other DD network programs.

They talk about the importance of relationship-building with legislators, the power of storytelling in policy work, and why advocacy is a long game. This conversation highlights how policy shapes the UCEDD network’s ability to serve people with disabilities nationwide and why staying engaged matters.

🎥 Watch this interview on YouTube! ⁠https://www.youtube.com/@umkcihd⁠

Resources in this episode:

• Association of University Centers on Disabilities (AUCD): ⁠https://www.aucd.org⁠

• AUCD Policy & Advocacy: ⁠https://www.aucd.org/policy⁠
• Follow Lillie Heigl on LinkedIn: https://www.linkedin.com/in/lillie-heigl-4a2930105/

Acronym Guide:

DD Act: Developmental Disabilities Act

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in Neurodevelopmental Disabilities

AUCD: Association of University Centers on Disabilities

For more information about UMKC-Institute for Human Development, visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠ihd.umkc.edu

George and Amelia sit down with Jacy Farkas from the University of Arizona Sonoran Center for Excellence in Disabilities, one of Arizona’s two UCEDDs. Jacy shares how the state’s unique geography and cultural diversity shape their work—from partnering with border communities and binational organizations to engaging with 22 federally recognized tribal nations. They talk about building trusted relationships, centering Indigenous perspectives, and serving as a bridge between the university and the community. This conversation highlights how UCEDDs work to build capacity within communities, expand opportunities, and support all people.Watch this interview on YouTube! ⁠https://www.youtube.com/@umkcihd⁠

Resources in this episode:

• University of Arizona Sonoran Center for Excellence in Disabilities: ⁠https://sonoracenter.arizona.edu⁠

• Circle of Indigenous Empowerment: ⁠https://sonorancenter.arizona.edu/cie⁠

• Project SEARCH: ⁠https://sonorancenter.arizona.edu/community-programs/project-search⁠

Acronym Guide:

DD Act: Developmental Disabilities Act

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in Neurodevelopmental Disabilities

AUCD: Association of University Centers on Disabilities

For more information about UMKC-Institute for Human Development, visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠ihd.umkc.edu

Today on the podcast, we’re joined by Dr. Eric Kurtz, Director of the UCEDD in South Dakota. In our conversation, Dr. Kurtz shares how his team works in the “gaps” between systems—connecting education, aging, mental health, and disability supports to address complex challenges. We dive into the reality of service deserts in both rural and urban areas, the unique needs of tribal communities, and how partnerships can extend expertise to families and frontline providers. Dr. Kurtz also talks about the power of storytelling through projects like Possibilities magazine, and why lifting up voices of lived experience is one of the most effective ways to show the impact of UCEDD and LEND programs.

*Producer Note: We struggled with technology for this interview, so apologies in advance for any oddities with the audio!*

Watch this interview on YouTube! ⁠https://www.youtube.com/@umkcihd⁠

Resources in this episode:

• University of South Dakota – Center for Disabilities: https://www.usd.edu/Academics/Colleges-and-Schools/sanford-school-of-medicine/Research-and-Outreach-Centers/Center-for-Disabilities

Acronym Guide:

DD Act: Developmental Disabilities Act

UCEDD: University Center for Excellence Developmental Disabilities

IDDRC: Intellectual and Developmental Disabilities Research Center

LEND: Leadership Education in Neurodevelopmental Disabilities

AUCD: Association of University Centers on Disabilities

Interview Transcript:

For more information about UMKC-Institute for Human Development, visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠ihd.umkc.edu

Re-Release! This episode was recorded as a live interview at the CORE 2024 Staff Conference - December 2024.

We thought it would be interesting to revisit this conversation, a reminder that if the structures we work within now are no longer funded or supported, how can we build something better? How can we take advantage of this season of tumult and change and use it as an opportunity for innovation?

Guest Bio:

Dr. Amy Hewitt has worked for over 40 years to improve community inclusion and quality of life for children, youth and adults with disabilities and their families. She is the current director of the University of Minnesota’s Institute on Community Integration. There she conducts research, evaluation, and demonstration projects on community living and belonging for children, youth and adults with disabilities and the direct support workforce.

*A quick note: As of this recording, Congress is still in the appropriations process, and funding for UCEDDs is at risk. You can help protect the future of disability services, research, and training by contacting your members of Congress today.

For the latest policy updates and information on how you can make a difference for the future of disability programs like ours, visit ⁠https://www.aucd.org/speak-up-for-ucedds ⁠.

You can also use AUCD’s action tool to send a message to your congress people in 2 minutes: ⁠https://aucd.quorum.us/campaign/133226/⁠

Resources in this episode:

- University of Minnesota, Institute on Community Integration: ⁠https://ici.umn.edu/⁠

- Support Wise Project, ICI: ⁠https://ici.umn.edu/products/-lbb3o-EQb-BhGAHTFH8Tg⁠

- Reinventing Quality Conference: ⁠https://reinventingquality.org/⁠

- Impact Magazine: ⁠https://ici.umn.edu/series/14⁠

- ADDM Network: ⁠https://www.cdc.gov/autism/addm-network/index.html⁠

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in Neurodevelopmental Disabilities

DSP: Direct Support Professional

ADDM: Autism and Developmental Disabilities Monitoring Site

For more information about UMKC-Institute for Human Development, visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ihd.umkc.eduInterview Transcript: https://ihd.umkc.edu/products/

In this episode, George and Amelia sit down with Marcia Moriarta, director of the University of New Mexico’s UCEDD and LEND program at the Center for Development and Disability. Marcia shares her insights on innovative programs for individuals with disabilities, interdisciplinary approaches to care, and the critical role of the national UCEDD and LEND network in advancing best practices across states.

Key Takeaways

1. UCEDDs provide flexible, interdisciplinary services that often cannot exist in traditional healthcare systems.
2. Programs like START show that addressing social, emotional, and relational needs can prevent crises and hospitalization.
3. Collaboration across the UCEDD/LEND network multiplies impact, sharing evidence-based practices nationwide.
4. LEND programs are life-changing for trainees, fostering skills that benefit individuals, families, and communities.
5. Both direct services and systemic interventions are critical for improving the lives of individuals with disabilities.

*A quick note: As of this recording, Congress is still in the appropriations process, and funding for UCEDDs is at risk. You can help protect the future of disability services, research, and training by contacting your members of Congress today.

For the latest policy updates and information on how you can make a difference for the future of disability programs like ours, visit ⁠https://www.aucd.org/speak-up-for-ucedds ⁠.

You can also use AUCD’s action tool to send a message to your congress people in 2 minutes: ⁠https://aucd.quorum.us/campaign/133226/⁠

Resources in this episode:

• University of New Mexico-Center for Development & Disability: https://hsc.unm.edu/cdd/
• New Mexico LEND Program: https://hsc.unm.edu/cdd/training-programs/nmlend/
• New Mexico START Program: https://cdd.health.unm.edu/autismportal/new-mexico-start/

Acronym Guide:

DD Act: Developmental Disabilities Act

UCEDD: University Center for Excellence Developmental Disabilities

IDDRC: Intellectual and Developmental Disabilities Research Center

LEND: Leadership Education in Neurodevelopmental Disabilities

AUCD: Association of University Centers on Disabilities

Watch this interview on YouTube! ⁠https://www.youtube.com/@umkcihd⁠

Interview Transcript: https://ihd.umkc.edu/products/

For more information about UMKC-Institute for Human Development, visit  ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ihd.umkc.edu.

Maureen Van Stone, director of the Maryland UCEDD at Kennedy Krieger Institute, talks about their unique structure, powerful advocacy work, and the impact of Project HEAL—a medical-legal partnership serving people with disabilities. She also shares why UCEDDs must speak up amid potential funding cuts.Topics Include:

- The Maryland UCEDD's strong focus on advocacy and public policy

- Project HEAL which provides legal services to individuals with disabilities and families

- Kennedy Krieger's collaborative model (legal, medical, advocacy, policy - all under one umbrella).

- Funding changes pose significant risks to UCEDDs and their programs.

- Telling the story of UCEDDs is essential for community awareness and support.

*A quick note: As of this recording, Congress is still in the appropriations process, and funding for UCEDDs is at risk. You can help protect the future of disability services, research, and training by contacting your members of Congress today.

For the latest policy updates and information on how you can make a difference for the future of disability programs like ours, visit ⁠https://www.aucd.org/speak-up-for-ucedds ⁠.

You can also use AUCD’s action tool to send a message to your congress people in 2 minutes: ⁠https://aucd.quorum.us/campaign/133226/⁠

Watch this interview on YouTube! ⁠https://www.youtube.com/@umkcihd⁠

Resources in this episode:

• Kennedy Krieger Institute: https://www.kennedykrieger.org/
• People on the Go Maryland: https://www.pogmd.org/
• Project HEAL (Health, Education, Advocacy, and Law): https://www.kennedykrieger.org/community/initiatives/maryland-center-developmental-disabilities/project-heal
• Disability Rights Maryland: https://disabilityrightsmd.org/

Acronym Guide:

DD Act: Developmental Disabilities Act

UCEDD: University Center for Excellence Developmental Disabilities

IDDRC: Intellectual and Developmental Disabilities Research Center

LEND: Leadership Education in Neurodevelopmental Disabilities

AUCD: Association of University Centers on Disabilities

Interview Transcript: https://ihd.umkc.edu/products/

For more information about UMKC-Institute for Human Development, visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ihd.umkc.edu

In this episode, Dr. Chris Murray from the University of Oregon’s UCEDD shares how decades of research, training, and deep community engagement have helped shape better outcomes for people with disabilities.

Topics Include:

- Overview of the Oregon UCEDD and their focus on early intervention and paraeducators

- How UCEDDs adapt to the needs of the community

- The critical value of UCEDD funding in Oregon and nationally

- The challenge of self-promotion in advocacy

- Balance between systems change and individual supports

- Why empathy must be backed by ongoing action

**A quick note: As of this recording, Congress is still in the appropriations process, and funding for UCEDDs is at risk. You can help protect the future of disability services, research, and training by contacting your members of Congress today.

For the latest policy updates and information on how you can make a difference for the future of disability programs like ours, visit https://www.aucd.org/speak-up-for-ucedds .

You can also use AUCD’s action tool to send a message to your congress people in 2 minutes: https://aucd.quorum.us/campaign/133226/

Watch this interview on YouTube! https://www.youtube.com/@umkcihd

Resources in this episode:

• University of Oregon-Center for Human Development: https://chd.uoregon.edu/
• Ages and Stages: https://agesandstages.com/

• Oregon Screening Project: https://osp.uoregon.edu/

• WIOA (Workforce Innovation and Opportunity Act): https://www.dol.gov/agencies/eta/wioa

• IDEA (Individuals with Disabilities Education Act): https://www.ed.gov/laws-and-policy/individuals-disabilities/idea

• Institute of Education Sciences: https://ies.ed.gov/

• SIG Network: https://signetwork.org/

Acronym Guide:

DD Act: Developmental Disabilities Act

UCEDD: University Center for Excellence Developmental Disabilities

IDDRC: Intellectual and Developmental Disabilities Research Center

LEND: Leadership Education in Neurodevelopmental Disabilities

Interview Transcript: https://ihd.umkc.edu/products/

For more information about UMKC-Institute for Human Development, visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠ihd.umkc.edu

In this episode, Dr. Jessica Schuttler, Director of Kansas LEND, and Emma Watson, a former LEND trainee and school psychology doctoral student, share how the program shaped their professional paths and personal perspectives. Frombuilding lifelong mentorships to learning with and from people with disabilities, this episode is all about connection, compassion, and leadership.

Chapters

00:00 Introduction to LEND and Its Impact

06:43 Personal Journeys and Experiences in LEND

12:40 Understanding the LEND Program

18:18 Clinical Experiences and Highlights of LEND

27:15 The Unique Value of LEND Training

35:25 The Future of LEND and Its ImportanceWatch Accessible on YouTube! ⁠https://www.youtube.com/@umkcihd

Resources in this episode:

- Kansas LEND Website: https://www.kumc.edu/school-of-medicine/academics/departments/pediatrics/academics/leadership-education-in-neurodevelopment-and-related-disabilities-(lend).html

- Beach Center on Disability: https://kucd.ku.edu/beach-center-disability-family-resources

- KU OASIS (Online and Applied Systems ofIntervention Skills) Program: https://oasis.ku.edu/

- Educational Specialist Degree in School Psychologyat University of Kansas: https://epsy.ku.edu/academics/school-psychology/specialist-degree

Acronym Guide:

DD Act: Developmental Disabilities Act

UCEDD: University Center for Excellence Developmental Disabilities

IDDRC: Intellectual and Developmental Disabilities ResearchCenter

LEND: Leadership Education in NeurodevelopmentalDisabilities

Interview Transcript: https://ihd.umkc.edu/products/

For more information about UMKC-Institute for HumanDevelopment, visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠ihd.umkc.edu