Accessible: Recent Episodes

UMKC - Institute for Human Development home of the Missouri UCEDD

We are glad you found Accessible, the podcast that opens the door to disability leaders and their ideas. Join George Gotto (Director of Missouri UCEDD) and Amelia Reighard (UCEDD Faculty) as they host Missouri state and national leaders who work in the developmental disabilities field. Learn how these leaders entered this field, about their current roles and organizations, and their take on the future of the field. Accessible is a partnership between the Missouri LEND and the Missouri UCEDD.

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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

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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/

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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.

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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

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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

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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

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In this episode, we’re taking a closer look at the Missouri Leadership Education in Neurodevelopmental Disabilities program—better known as LEND. Our guests are Dr. Rosie Kaemmerer, Co-Director of the Missouri LEND program, and Carson Miller, a physical therapist and former LEND trainee.

Carson shares how the program gave him the tools to become a stronger, more thoughtful practitioner. Rosie offers insight into how LEND’s interdisciplinary approach fosters collaboration and support—not just for trainees, but for faculty and clinicians as well.

Resources in this episode:

  • Missouri LEND (TIPS for Kids) Website: https://thompsoncenter.missouri.edu/tips4kids/
  • Learn more about LEND programs nationally: https://www.aucd.org/urc/lend2

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

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

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We’re kicking off our new series, Voices of the Network,with none other than Sandy Root-Elledge, Interim Executive Director of AUCD (Association of University Centers onDisabilities).

Sandy brings deep expertise in disability policy, systemschange and advocacy—plus personal insight as a parent of two adult children with disabilities.

From leading the Wyoming Institute for Disabilities to now the national university center organization, AUCD, her work has shaped the landscape of disability services.

In this episode, Sandy helps us understand where UniversityCenters on Disability came from, how they work and why they matter now morethan ever.

Watch this interview on YouTube!

Resources in this episode:

  • AUCD Website: www.aucd.org
  • Kennedy Center Library: Transcriptof Report to the President- A Proposed Program for National Action to CombatMental Retardation | National Archives
  • AUCD Website: AUCD | Annual Report
  • Developmental Disabilities Assistance and Billof Rights Act: Public Law 106–402, 106th Congress: Download the Developmental Disabilities Assistance andBill of Rights Act of 2000 (PDF, 356KB)

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

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In this conversation, George and Amelia chat with Maggie Rollwagen, President and CEO of Abilities First – an organization out of Springfield, Missouri that promotes inclusive opportunities for people with developmental disabilities. Maggie emphasizes the need for community education, advocacy, and the significance of socialconnections for individuals with disabilities – emphasizing the importance of belonging for all people. Through their various programs and funding initiatives, their work has had tremendous impact on the people of Greene County. And they are just getting started!

Resources in this episode:

  • Abilities First Website: https://abilitiesfirst.net/
  • To learn more about county boards in Missouri, listen to our interview with MACDDS Director Nancy Pennington (Season 2, Episode 5)
  • To learn more about service providers, listen to our interview with Starling CEO Erika Leonard (Season 2, Episode 10)

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in Neurodevelopmental Disabilities

SB40 Board: Senate Bill 40 Board

For full video episodes, visit our UMKC-Institute for Human Development YouTube Channel: https://www.youtube.com/channel/UCzGnCTrERWKXFdcufnsXIiA

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2025/05/Maggie-Rollwagen-Transcript.pdf

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

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In this episode, we sit down with Dr. Makhaya Malema, avisiting scholar from the University of Western Cape in South Africa, who is visiting UMKC through a university partnership focused on learning about our disability networks. Dr. Malema shares his insights on disability leadership in leisure and recreation, while exploring the powerful concepts of Ubuntu and the disability rights slogan Nothing About Us Without Us. We discuss strategies for reducing exclusions in community spaces and emphasize the importance of including individuals with disabilities in decision-making to ensure true equity. Tune in for a thought-provoking conversation on disability inclusion and leadership.

Resources in this episode:

  • Ubuntu definition: Ubuntu describes a set of closely related Bantu African-origin value systems that emphasize the interconnectedness of individuals with their surrounding societal and physical worlds. "Ubuntu" is sometimes translated as "I am because we are", or "humanity towards others".
  • National Council for Persons with Disabilities: https://ncpd.org.za/
  • University of Western Cape: https://www.uwc.ac.za/
  • To read more of Dr. Malema's research: https://www.researchgate.net/profile/Makhaya-Malema

Acronym Guide:

UCEDD: University Center for Excellence in DevelopmentalDisabilities

LEND: Leadership Education in NeurodevelopmentalDisabilities

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2025/02/021925-Makhaya-Malema-Transcript-2.pdf

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

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Dr. Amy Hewitt has worked for over 40 years to improvecommunity 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.We had the pleasure of having Amy as our Keynote Speaker at our UMKC Institute for Human Development CORE 2024 All Staff Conference in December. This episode was recorded as a live interview at the event in front of an audience, a first in show history! We are so excited to share this interview and can’t wait to do more live episodes in the future.Resources in this episode:

  • University of Minnesota, Institute on CommunityIntegration: https://ici.umn.edu/

  • SupportWise 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 DevelopmentalDisabilities

LEND: Leadership Education in NeurodevelopmentalDisabilities

DSP: Direct Support Professional

ADDM: Autism and Developmental Disabilities Monitoring Site

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2025/02/Amy-Hewitt-Transcript.pdf

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

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In this conversation, Julie Petty shares her journey fromjournalism to becoming a prominent advocate for individuals with disabilities, especially those that have experienced abuse. She discusses the importance of family support, the challenges faced by people with disabilities, and the need for education on healthy relationships, sexual health, and self advocacy. Julie emphasizes the impact of protectionism on individuals and the challenges in reporting abuse. She highlights national awareness efforts and the role of allyship in advocacy, as well as her leadership experience on the President's Committee. The conversation concludes with a focus on future directions in disability advocacy and resources for further engagement.

Resources in this episode:

  • Self Advocacy Summit Summary Report: https://www.youtube.com/watch?v=6nNRar-wh80

  • Self Advocates Becoming Empowered (SABE): https://www.facebook.com/profile.php?id=61551523277439

  • Partners for Inclusive Communities -- UCEDD at University of Arkansas: https://uofapartners.uark.edu/

  • Dave Hingsburger - "Prison of Protection" -- Learn more here: https://www.ncedsv.org/wp-content/uploads/2023/03/The-Ring-of-Safety.pdf

  • After Abuse, Resources for Missourians with Disabilities: https://www.afterabusemoguide.com/about-us/

Acronym Guide:

UCEDD: University Center for Excellence in DevelopmentalDisabilities

LEND: Leadership Education in NeurodevelopmentalDisabilities

Interview Transcript:

https://ihd.umkc.edu/wp-content/uploads/2025/01/ACCESSIBLE-Julie-Petty-Transcript-1.pdf

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

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In today’s episode, we have Lisa Sutherland on the pod todiscuss her work as an attorney with Missouri Protection and Advocacy Services, a non-profit, public interest law firm that works to protect the rights of people with disabilities. Whether it’s helping to navigate inclusion in schools, investigation into abuse and neglect cases, or restoring rights to individuals under guardianship – the advocates at MO P&A provide vital services to people with disabilities in Missouri.

Resources in this episode:

  • Missouri Protection & Advocacy Services: www.Moadvocacy.org

Acronym Guide:

UCEDD: University Center for Excellence in DevelopmentalDisabilities

LEND: Leadership Education in NeurodevelopmentalDisabilities

P&A: Protection and Advocacy

TBI: Traumatic Brain Injury

Interview Transcript:

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

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In today’s episode, George and Amelia hear from Dr. KarrieShogren, director of the Kansas University Center for Excellence in Developmental Disabilities, and one of the fields premier experts on self-determination. Dr. Shogren also shares insights on the role of education and training in advocacy, the significance of collaborative learning, and the future for inclusive research.

Resources in this episode:

Kansas University Center on Disabilities: https://kucd.ku.edu/

Acronym Guide:

UCEDD: University Center for Excellence in DevelopmentalDisabilities

LEND: Leadership Education in NeurodevelopmentalDisabilities

Watch this interview on YouTube!https://youtu.be/l_uxQ0UkXZEInterview Transcript: https://ihd.umkc.edu/wp-content/uploads/2024/11/Karrie-Shogren-Transcript.pdfFor more information about UMKC-Institute for HumanDevelopment, visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠ihd.umkc.edu

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In this conversation, George and Amelia chat with EmilyHartley, the new executive director of the Missouri Developmental Disabilities Council. Emily shares her journey into the field of disability advocacy, herexperiences working with individuals with disabilities, and the importance of self-advocacy and family involvement in shaping policies.

Resources in this episode:

MO WINGS – https://www.mo-wings.org/

Olmstead Decision – https://archive.ada.gov/olmstead/olmstead_about.htm

Missouri DD Council https://moddcouncil.org/

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in NeurodevelopmentalDisabilities

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2024/11/Emily-Hartley-Transcript.pdf

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

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In today’s episode, we are joined by David Baker, directorof Missouri Assistive Technology. In this conversation, we dive into the transformative power of assistive technology and how it can be integrated into people’s lives at every stage. Through 3D printing and loan programs, the smallbut mighty team at Missouri AT are making a huge impact on people with disabilities in our state.

We did have some technical difficulties somewhere in themiddle of this episode, so please excuse the shift in audio quality around the 15 minute mark.

Resources in this episode:

Tech Act of 1988: https://rtcil.org/sites/rtcil/files/documents/ATA%20Fact%20Sheet%202.15.2021--Fixed.pdf

To find an AT program in your state: https://at3center.net/state-at-programs/

Missouri AT Device Loan Program: https://at.mo.gov/device-loan/

Missouri AT Show Me Loans: https://at.mo.gov/show-me-loans/

Acronym Guide:

UCEDD: University Center for Excellence in DevelopmentalDisabilities

LEND: Leadership Education in NeurodevelopmentalDisabilities

AT: Assistive Technology

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2024/10/David-Baker-Transcript-1.pdf

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

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In today’s episode, our hosts chat with Pam Merkle, the executive director of the Association on Aging with Developmental Disabilities (or AADD). She discussesthe innovative programs AADD offers to support individuals aging with developmental disabilities, emphasizing the importance of community, humor, andhealthy aging practices. Pam highlights the significance of partnerships in delivering effective services and provides valuable advice for newcomers in the field. She also shares stories of community engagement and friendship and how important these real-life connections to the people they serve are to improving their quality of life.

Resources in this episode:

AADD AnnualConference (May 12-13, 2025) – St. Louis, MO

⁠https://www.agingwithdd.org/conference/⁠

To learn more about AADD:

Facebook: https://www.facebook.com/agingwithdd

LinkedIn: https://www.linkedin.com/company/association-on-aging-with-developmental-disabilities

Twitter: https://x.com/AaddSt

Instagram: https://www.instagram.com/aaddstl/

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in NeurodevelopmentalDisabilities

AADD: Association on Aging with Developmental Disabilities

Interview Transcript:

https://ihd.umkc.edu/wp-content/uploads/2024/10/Pam-Merkle-Transcript-Extended.pdf

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

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We’re back! Our esteemed hosts took the summer off from podcasting, but Accessible is back to regularly scheduled programming with an exciting roster of interviews this fall. First up, we have Kim Riley, founder of the Transition Academy here in Kansas City. Kim discusses the importance of economic inclusion for individualswith disabilities and the need for customized support and resources. She shares her personal journey as a parent of a child with autism and how it inspired her to create the Transition Academy. She also advocates for fun and joy in the disability space and encourages a shift towards innovative and inclusive approaches.

Resources in this episode:

Transition Academy: www.thetransitionacademy.org

Annual KC DiversAbility College & Career Fair: https://thetransitionacademy.org/kc-diversability-college-and-career-fair/

PASS Program: https://www.ssa.gov/disabilityresearch/wi/pass.htm

Acronym Guide:

UCEDD: University Center for Excellence in DevelopmentalDisabilities

LEND: Leadership Education in NeurodevelopmentalDisabilities

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2024/09/Kim-Riley-Transcript-1.pdf

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

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Today we are joined by Meghan Burke, a professor of Special Education from Vanderbilt University. Beyondher role as an important educator, Meghan is a widely sought-after lecturer and researcher in advocacy, families and siblings, and disability policy, and she has published well over 130 articles in scholarly journals in her career. In this conversation we dive into how a strong relationshipbetween families and professionals can have a huge impact on individuals with disabilities. As special education teacher, these partnerships led Meghan todevelop advocacy programming for families as a researcher, empowering and educating them to navigate the complex landscape of disability services.

Resources in this episode:

  • Due Process Complaint Explanation: https://www.missouriparentsact.org/resources/communicating-effectively/due-process-complaint-due-process-hearing/
  • Find a Parent Training and Information (PTI) Center near you: https://www.parentcenterhub.org/find-your-center/
  • Exceptional Lives Book: https://www.amazon.com/Exceptional-Lives-Practice-Progress-Dignity/dp/0134984331
  • National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR): https://acl.gov/about-acl/about-national-institute-disability-independent-living-and-rehabilitation-research
  • Section 504 of the Rehabilitation Act: https://www.hhs.gov/sites/default/files/ocr/civilrights/resources/factsheets/504.pdf
  • Council of Parent Attorney and Advocates (COPAA): https://www.copaa.org/
  • Vanderbilt Kennedy Center UCEDD: https://vkc.vumc.org/vkc/ucedd

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in Neurodevelopmental Disabilities

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2024/06/060324-Meghan-Burke-Transcript.pdf

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

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In this episode, George and Amelia talk to Sharon Williams – longtime member of the Missouri Developmental Disabilities Council, a retired attorney, and a parent of an adult son with a developmental disability. Sharon has also been a vital member of our Advisory Leadership Team here at UMKC Institute for Human Development – offering feedback on programs that impact individuals and families. Sharon and her son Bobby represent an important, but not always acknowledged, part of the life span of supporting someone with a disability – both her and her son are aging. This was a great conversation tohear about the supports that Bobby has in his life outside of his family – employment, extracurricular activities, and community engagement and the journey they went on to get there.

Resources in this episode:

  • Missouri Developmental Disabilities Council: https://moddcouncil.org/
  • Special Olympics Missouri: https://somo.org/
  • MO WINGS (Missouri Working Interdisciplinary Network of Guardianship Stakeholders): https://www.mo-wings.org/
  • After Abuse, Resources for Missourians with Disabilities: https://www.afterabusemoguide.com/

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in Neurodevelopmental Disabilities

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2024/05/5-15-2024-Sharon-Williams-Transcript.pdf

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

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On today’s episode, we are joined by Katie Arnold, an inclusive researcher and disability advocate at the Department of Disability and Human Development at the University of Illinois Chicago. Growing up with a sister with an intellectual and developmental disability, Katie intimately understands the sibling experience. She founded the Sibling Leadership Network whichprovides support and resources for siblings of individuals with disabilities. Her newest project, the Future is Now is a curriculum that walks families through how plan for the future, ask difficult questions, and make sure everyone’s needs are met. The Future is Now is available Virtually for anyone, anywhere. Resources in this episode:

  • Sibling Leadership Network (SLN): https://siblingleadership.org/
  • Missouri SLN Chapter: https://www.missourisln.org/
  • L'Arche Communities: https://www.larche.org/
  • University of Illinois-Chicago, Department of Disability and Human Development: https://ahs.uic.edu/disability-human-development/
  • The Virtual Future is Now: https://sites.google.com/view/vfin-uic

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in Neurodevelopmental Disabilities

Interview Transcript:

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

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In today’s episode, George and Amelia chat with Karen and Candace Cunningham, an amazing Mother-Daughterduo. The conversation covers Karen's role as Candace's mother but also her first advocate. We learn about their journey through diagnosis to transitioning to adulthood, and how Karen taught Candace to advocate for herself and get out of her comfort zone. We love these two, and know you will too.

Resources in this episode:

  • Missouri Family to Family: ⁠⁠https://mofamilytofamily.org/⁠⁠
  • People First of Missouri: ⁠https://www.missouripeoplefirst.org/⁠
  • Candace's Corner: https://www.facebook.com/p/Candaces-Corner
  • Charting the Life Course: www.lifecoursetools.com

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in Neurodevelopmental Disabilities

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2024/04/3-22-2024-Candace.pdf⁠

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

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In today’s episode, George and Amelia chat with ColetteCanchola-Cox, Director of Missouri Family to Family, housed here at UMKC Institute for Human Development. In this conversation, we learn about the social consequences of a developmental disability diagnosis and the positive impacts of a strong peer support network. As a mother of a son with Autism, Colette shares her personal experience navigating the developmental disability system. Now as a professional in the field, she is leveraging that knowledge to advocate for families in our state.Resources in this episode:

  • Missouri Family to Family: ⁠https://mofamilytofamily.org/⁠
  • People First of Missouri: https://www.missouripeoplefirst.org/

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in Neurodevelopmental Disabilities

HCBS: Home and Community Based Services

IEP: Individual Education Plan

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2024/04/03062024-ColetteTranscript.pdf

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

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In today’s episode, George and Amelia catch up with Sheli Reynolds, Associate Director here at UMKC Institute for Human Development and Director of LifeCourse Nexus. Growing up as a sibling of someone with a disability, Sheli brings a personal perspective to her work in advocacy,systems change, and her development of the LifeCourse Tools framework. This was a fascinating conversation about the landscape of supporting families of individuals with disabilities and how the context of the family is vital in providing care in all areas.

Resources in this episode:

  • LifeCourse Nexus: https://www.lifecoursetools.com/
  • LifeCourse Showcase - April 23-25, 2024 - Kansas City, Missouri: https://www.lifecoursetools.com/events/showcase-2024/
  • Missouri Family to Family: https://mofamilytofamily.org/
  • People First of Missouri: https://www.missouripeoplefirst.org/
  • Community of Practice: Supporting Families Throughout the Lifespan - https://www.nasddds.org/projects/community-of-practice-supporting-families-throughout-the-lifespan/
  • To learn more about the Turnbull Family:⁠ https://mn.gov/mnddc/ann-turnbull/ann-turnbull-10.html⁠

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in Neurodevelopmental Disabilities

HCBS: Home and Community Based ServicesInterview Transcript: https://ihd.umkc.edu/wp-content/uploads/2024/03/S3-E1-Transcript-Sheli-FINAL-1.pdfFor more information about UMKC-Institute for Human Development, visit ⁠⁠⁠⁠ihd.umkc.edu

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In this episode, George and Amelia talk to Maureen Cunningham, Executive Director of the Brain Injury Association of Missouri – an organization that supports the emotional and social side of brain injury. We learn about the prevalence of brain injuries, what to do if you suspect a brain injury has occurred, and the resources that are available for individuals and families affected.

CW: There are some descriptions of traumatic brain injury events and maybe some graphic language that might be disturbing to some listeners, so slight content warning if that type of discussion doesn’t feel good to you.

Resources in this episode:

  • Brain Injury Association of Missouri: https://www.biamo.org/
  • Missouri AgrAbility: https://extension.missouri.edu/programs/agrability
  • BIA-MO Statewide Conference (Oct. 19-21): https://www.biamo.org/bia-mo-annual-statewide-conference-oct-19-21-2023/
  • Brain Injury Association of American Hotline: 1-800-444-6443

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in Neurodevelopmental Disabilities

TBI: Traumatic Brain InjuryInterview Transcript: https://ihd.umkc.edu/wp-content/uploads/2023/09/Transcript-Maureen-Cunningham.pdf

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

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In this episode, George and Amelia sit down with Erika Leonard. Erika is the CEO of Starling Missouri, formerly known as the Missouri Association of Rehabilitation Facilities (or MARF). Starling’s mission is to improve the lives of Missourians with disabilities by driving public policy and strengthening member organizations through advocacy, education and collaboration. Erika has been a leader in disability advocacy at the policy level, working to help legislators understand how their ballot measures and budget cuts affect the lives of real people.

Resources in this episode:

  • Starling Missouri (formerly MARF) www.marf.cc / www.starlingmissouri.org (comingsoon!)
  • Employment First Legislation: https://moddcouncil.org/time-to-celebrate-ticket-to-work-and-employment-first-legislation-signed-into-law/
  • Greater Kansas City Business Leadership Network: https://www.gkcbln.org/
  • Missouri Department of Mental Health: https://dmh.mo.gov/
  • Missouri Division of Developmental Disabilities: https://dmh.mo.gov/dev-disabilities
  • Missouri Intern and Apprenticeship Recruitment Act: https://www.kcur.org/news/2023-08-09/missouri-creates-tax-credits-for-internships-hoping-to-grow-and-retain-young-talent
  • Missouri Division of Vocational Rehabilitation: https://dese.mo.gov/adult-learning-rehabilitation-services/vocational-rehabilitation
  • Value Based Payments: https://dmh.mo.gov/dev-disabilities/value-based-payments
  • Follow MARF on Facebook
  • Follow MARF on Twitter

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

IDD: Intellectual/Developmental Disabilities

MARF: Missouri Association of Rehabilitation Facilities

LEND: Leadership Education in Neurodevelopmental Disabilities

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2023/08/Transcript-Erika-Leonard.pdf

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

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In this episode, George and Amelia sit down with Briana Conley & Stephanie McDowell from Paraquad, a center for independent living thathas been piloting a program to bring sexual health education to people with intellectual and developmental disabilities – a population that is typically excluded from sex ed. This work is so incredibly important, beyond preventing abuse – this type of education gives people the knowledge to engage in sexuality in a healthy and fulfilling way.

Resources in this episode:

  • Paraquad, Center for Independent Living: paraquad.org
  • MODDC Grant Award: https://paraquad.org/blog/blog-post-three-pd23h
  • Paraquad Sexual Health & Healthy Relationships Class: https://static1.squarespace.com/static/62fbc18a4f9abd0287618c68/t/6446f139faac7a6de06d2f20/1682370873316/Sex+Ed+Flyer-No+Dates.pdf

Acronym Guide:

UCEDD: University Center for Excellence in Developmental Disabilities

LEND: Leadership Education in Neurodevelopmental Disabilities

CIL: Center for Independent Living

MODDC: Missouri Developmental Disabilities Council

CONTACT:

Briana Conley, bconley@paraquad.org

Phone: 314-289-4304

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2023/08/Transcript-Briana-Conley-and-Stephane-McDowell.pdf

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

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In this episode, George and Amelia sit down with Christopher Worth. Chris is a community organizer, professor, writer, poet, and visual artist. He is currently pursuing his PhD at the University of Missouri St. Louis where he is also a faculty member for SUCCEED, a program that promotes inclusive education and guides people with disabilities in the pursuit of higher education. We have had the pleasure of working with him this summer in our Individual Advocacy program as an intern here at the Institute for Human Development. Chris has such a unique and dynamic voice and has written about disability as a culture, and further, how this framing is a basis for creating change through community organizing. He has done advocacy work in the field around inclusive education, sexual health for people with disabilities, and so much more.

Resources in this episode:

  • UMSL SUCCEED Program: https://www.umsl.edu/succeed/Program%20Information/index.html
  • The Arc: https://thearc.org/
  • Mountaintop Removal: any method of surface coal mining thatdestroys a mountaintop or ridgeline (https://appvoices.org/end-mountaintop-removal/mtr101/)
  • Lazarus Tree by Christopher R.J. Worth (Poem) https://www.amazon.com/Lazarus-Tree-Christopher-R-J-Worth/dp/B09TGJFYK1/ref=sr_1_1?crid=2Q2UP3ZXUBCYP&keywords=christopher+rj+worth&qid=1689613362&s=books&sprefix=christopher+rj+worth%2Cstripbooks%2C106&sr=1-1
  • See Chris's artwork: https://christopher-r-j-worth.com/

Acronym Guide:

LEND: Leadership Education in Neurodevelopmental Disabilities

UCEDD: University Center for Excellence in Developmental Disabilities

CP: Cerebral PalsyInterview Transcript: https://ihd.umkc.edu/wp-content/uploads/2023/07/Transcript-Chris-Worth.pdf

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

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In today’s episode, George and Amelia catch up with Jane St. John, Senior Research Associate and Lead Product Development specialist here at UMKC Institute of Human Development. As a parent of a son with a disability, Jane is a true expert in family supports. Through her work with the LifeCourse Nexus program, Jane has helped develop tools and resources to help families and caregivers navigate guardianship, supported decision making, and so much more.

Resources in this Episode:

  • Charting the LifeCourse: www.lifecoursetools.com
  • Supported Decision Making Resource Tool: https://www.lifecoursetools.com/lifecourse-library/exploring-the-life-domains/supported-decision-making/
  • Missouri Family to Family: https://mofamilytofamily.org/
  • Life Course Tools on Facebook: www.facebook.com/lifecoursetools/
  • Charting the LifeCourse in Action on Facebook: www.facebook.com/groups/CtLCinAction/

Acronym Guide:

LEND: Leadership Education in Neurodevelopmental Disabilities

UCEDD: University Center for Excellence in Developmental Disabilities

DESE: Department of Elementary and Secondary Education

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2023/06/Transcript-Jane-St.-John.pdf

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

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In this episode, we talk to April Regester. April is the Department Chair of Educator Preparation & Leadership and an Associate Professor of Inclusive Education at the University of Missouri St. Louis. She is also the leader behind the Succeed program which helps young adults with disabilities transition to college, a program that just celebrated 10 years of inclusive education and advocacy.

Acronym Guide:

LEND: Leadership Education in Neurodevelopmental Disabilities

UCEDD: University Center for Excellence in Developmental Disabilities

SB40 Board: Senate Bill 40 Board

Resources in this episode:

  • St. Louis Arc: https://www.slarc.org/
  • TPSID: https://www.aucd.org/docs/tpsid.pdf
  • Koegel Autism Center: https://education.ucsb.edu/clinics-centers/koegel-autism-center/general-information-and-resources/welcome
  • UMSL Succeed Program: https://www.umsl.edu/succeed/Program%20Information/index.html
  • Comprehensive Transition Program: https://studentaid.gov/understand-aid/eligibility/requirements/intellectual-disabilities
  • Ruby’s Rainbow: https://rubysrainbow.org/
  • Show Me College: https://showmecollege.com/
  • Think College: https://thinkcollege.net/

Interview Transcript:⁠ https://ihd.umkc.edu/wp-content/uploads/2023/06/Inclusive-Higher-Education-with-April-Regester_Transcript_S2-Ep6.pdf

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

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Our guest today is Nancy Pennington. Nancy is the Executive Director of the Missouri Association of County Developmental DisabilitiesServices or MACDDS. MACDDS is comprised of 62 county Senate Bill 40 Boards and a number of other organizations that all work together to improve the lives of individuals with intellectual and developmental disabilities and their families. In this conversation, we gain insight into how the county board network is strategizing and collaborating to solve a variety of problems that affect people with disabilities. Nancy is such a generous leader and advocate, and we all left this conversation feeling inspired.

Acronym Guide:

LEND: Leadership Education in Neurodevelopmental Disabilities

UCEDD: University Center for Excellence in Developmental Disabilities

SB40 Board: Senate Bill 40 Board

MACDDS: Missouri Association of County Developmental Disabilities Services

MARF: Missouri Association of Rehabilitation Facilities

DSP: Direct Support Professional

Resources in this episode:

  • MACDDS (Missouri Association of County Developmental Disabilities Services) https://macdds.org/
  • MACDDS Conference September 27-29, 2023: http://events.r20.constantcontact.com/register/event?oeidk=a07ejr680wode416e59&llr=6ifggxcab
  • Partnership for Hope Waiver: https://dss.mo.gov/mhd/waivers/1915c-home-and-community-waivers/partnership-for-hope.htm
  • MARF (Missouri Association of Rehabilitation Facilities): https://marf.cc/
  • Direct Support Professional Job Website: www.dspmo.com
  • Missouri Talent Pathways (Direct Support Professional Apprenticeship Program): https://dmh.mo.gov/dev-disabilities/service-providers/talent-pathways
  • StationMD (Telehealth program for people with I/DD): https://stationmd.com/

Follow MACDDS on Facebook: https://www.facebook.com/MACDDS/

Nancy Pennington on LinkedIn: https://www.linkedin.com/in/nancy-pennington-75008645Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2023/05/Transcript-Nancy-Pennington.pdf

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

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Today we are talking to Dr. Christina Gurnett. Dr. Gurnett is a Neurologist in Chief at St Louis Children's Hospital and a Professor of Neurology at Washington University. She is also the co-director of the Intellectual and Developmental Disabilities Research Center, or IDDRC, at Washington University. We caught up with Chris on location at this year’s Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities which is one of the premier conferences for behavioral scientists conducting research on intellectual and developmental disabilities. Her community-based approach to cutting edge scientific research puts individuals and families at the center.

Acronym Guide:

LEND: Leadership Education in Neurodevelopmental Disabilities

UCEDD: University Center for Excellence in Developmental Disabilities

IDDRC: Intellectual and Developmental Disability Research Center

RADx: Rapid Acceleration of Diagnostics

NICHD: National Institute of Child Health and Human Development

Resources in this episode:

  • Missouri LEND program: ⁠⁠https://thompsoncenter.missouri.edu/autism-training/tips4kids/⁠
  • Kennedy Krieger Institute: https://www.kennedykrieger.org/
  • Washington University Saint Louis IDDRC: https://iddrc.wustl.edu/
  • Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities: https://gatlinburg.lsi.ku.edu/
  • Institute of Clinical and Translational Science, Washington University: https://icts.wustl.edu/
  • McDonald Genome Institute, Washington University: https://genome.wustl.edu/
  • Health Communications Laboratory, Washington University: https://hcrl.wustl.edu/
  • Brown School of Social Work, Washington University: https://brownschool.wustl.edu/Pages/default.aspx

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2023/05/Transcript-Chris-Gurnett.pdfFor more information about UMKC-Institute for Human Development visit ⁠https://ihd.umkc.edu/

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In this episode, we had the pleasure of speaking with Susan Parker. Susie is a self-advocate, public speaker, and and Self-Determination Instructor forEasterseals Midwest. She also serves as the President of the St. Charles Chapter of People First Missouri. She uses her voice to empower those with a disability to know their rights and advocate for change in the state of Missouri.

Resources in this episode:

  • Easterseals Midwest: https://www.easterseals.com/midwest/
  • People First of St Charles: facebook.com/PFSCC
  • People First: https://www.missouripeoplefirst.org
  • SARTAC Fellowship: https://www.selfadvocacyinfo.org/fellows/
  • Missouri LEND program: https://thompsoncenter.missouri.edu/autism-training/tips4kids/
  • Charting the LifeCourse Annual Showcase (May 2-4, 2023): https://www.lifecoursetools.com/events/showcase-2023/

Acronym Guide:

LEND: Leadership Education in Neurodevelopmental Disabilities

UCEDD: University Center for Excellence in Developmental Disabilities

DSP: Direct Support Professionals

Hab-Centers: Habilitation Centers

DDRB: Developmental Disability Resource Board

IEP: Individual Education Plan

ISP: Individual Service Plan

VICA: Vocational Industrial Clubs of America

DFS: Division of Family ServicesISLA: Independent Supported Living Arrangement

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2023/04/Transcript-SusieParker.pdf

Contact Susan Parker: susan.parker@esmw.org

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

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In this episode, we talk to Derrick Willis. He is the current director of Iowa’s University Center of Excellence in Developmental Disabilities (UCEDD) and is the incoming President of the Association of University Centers on Disabilities (AUCD).

Before his current role, he served as the director of urban mission here at IHD in Kansas City, so this conversation is a reunion of old friends!

He has spent the majority of his over 30-year career specializing in youth and families from diverse backgrounds living in urban communities. Through his work, he has become a national leader on the importance of diversity, equity, and inclusion in the field of developmental disabilities.

Acronym Guide:

LEND: Leadership Education in Neurodevelopmental Disabilities

UCEDD: University Center for Excellence in Developmental Disabilities

IDDRC: Intellectual and Developmental Disability Research Center

AUCD: Association of University Centers on Disability

Resources in this episode:

  • Association of University Centers on Disabilities - www.aucd.org
  • Iowa UCEDD: https://ucedd.uihc.org/
  • Iowa UCEDD Podcast: Disability Exchange https://open.spotify.com/show/7dxO8wGU00u6KPDYc1U3FG
  • Missouri LEND program: https://thompsoncenter.missouri.edu/autism-training/tips4kids/
  • Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2023/04/Derrick-Willis-Transcript.pdf

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

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We're back for Season 2!

In this episode, we talk to Dr. Rose O’Donnell, a clinical psychologist, Co-Director of Clinical Training for the Department of Health Psychology at the University of Missouri, and a faculty member for the Missouri LEND Program.

Her work is based out of the University of Missouri’s Thompson Center for Autism and Neurodevelopment, a national leader in confronting the challenges of autism spectrum disorder.

Rose talks about her family-centered approach to the diagnosis and treatment of Autism, how societal and cultural dynamics influence how parents adapt, and offers strategies for professionals and families dealing with the diagnostic waitlist crisis.

Resources in this episode:

  • Thompson Center for Autism & Neurodevelopment: https://thompsoncenter.missouri.edu/resources/general-resource-links/
  • Missouri Autism Centers: https://dmh.mo.gov/dev-disabilities/autism/centers
  • Missouri LEND program: https://thompsoncenter.missouri.edu/autism-training/tips4kids/
  • First Steps, Early Intervention Program: https://dese.mo.gov/childhood/early-intervention/first-steps

Interview Transcript: https://ihd.umkc.edu/wp-content/uploads/2023/03/Rose-Odonnell-Transcript.pdf

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

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In this episode, we speak with John Tschida, Executive Director of the Association of University Centers on Disability (AUCD). AUCD is a national network of interdisciplinary centers advancing policy and practice for and with individuals with disabilities, their families, and communities. John has a very personal connection to the disability field. After sustaining a spinal cord injury early on in his career, he gained new perspective and motivation for developing policy, programs, and services for people with disabilities.

In our time together, John shared the many ways new and emerging leaders in this field can get connected with the national disability network. He also shares how lessons from our pandemic response could positively impact current federal legislation on behalf of people with developmental disabilities.

Resources in this episode:

  • Association of University Centers on Disabilities - www.aucd.org
  • AUCD Councils - https://www.aucd.org/template/page.cfm?id=28
  • Share Your Story, LEND Trainees - https://www.aucd.org/template/page.cfm?id=994
  • AUCD Network Narratives: Real Stories from Our Members - https://www.aucd.org/template/page.cfm?id=1221
  • National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) - https://acl.gov/about-acl/about-national-institute-disability-independent-living-and-rehabilitation-research
  • National Institutes of Health Fellowship - https://researchtraining.nih.gov/programs/fellowships

For more information about the Missouri UCEDD at UMKC-Institute for Human Development visit https://ihd.umkc.edu/

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In this episode, we talk with Jessica Bax, Director of the Missouri Division of Developmental Disabilities, located in Jefferson City. The Division of DD provides services to Missourians with intellectual and developmental disabilities including oversight of Missouri’s home and community based Medicaid service waivers.

Jessica shares her professional journey in the field from working in constituent services to her leadership role at the Division of DD. In addition to her introduction to the services provided by the Division off DD, Jessica shares her own experiences navigating services as a parent and solutions to the direct support professional crisis that currently faces the field.   

Resources in this episode:

  • MO Division of Developmental Disabilities https://dmh.mo.gov/dev-disabilities

For more information about the Missouri UCEDD at UMKC-Institute for Human Development visit https://ihd.umkc.edu/

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In this episode we speak with Jeff Johnson, former president and current member of People First of Missouri. As an advocate for himself and others with a disability, Jeff has vast experience working with state and local agencies and organizations such as being an Advocacy Specialist for the Missouri Division of Developmental Disabilities and a co-chair of the self-advocate conference, "Real Voices, Real Choices". 

During our conversation, Jeff discusses important issues facing Missourians such as the school to prison pipeline experienced by students with disabilities and the underrepresentation of BIPOC in the self-advocacy movement. 

Resources in this episode: 

  • People First of Missouri - https://www.missouripeoplefirst.org/
  • People First Boone County Chapter - https://peoplefirstofboonecountymo.wordpress.com/
  • Jeff's SARTAC presentation on Segregated Education and the School to Prison Pipeline - https://www.selfadvocacyinfo.org/resource/confronting-segregated-education-and-the-school-to-prison-pipeline/
  • Self-Advocacy Resource and Technical Assistance Center (SARTAC) - https://www.selfadvocacyinfo.org/

For more information about the Missouri UCEDD at UMKC-Institute for Human Development visit https://ihd.umkc.edu/

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Today we have the pleasure of hearing from Accessible' s very own, Dr. George Gotto. While you know him as George, Accessible co-host, his day job is actually the Director of the University of Missouri - Kansas City, Institute of Human Development (UMKC-IHD). 

George shares how his early experiences with disability shaped his views on the value people with disabilities have to our society and eventually how those views propelled him into the field. 

In our conversation we discuss what it means to be a UCEDD (University Center for Excellence in Developmental Disabilities), its mission and work in Missouri, and how Accessible came into being.  

For more information about the Missouri UCEDD at UMKC-Institute for Human Development visit https://ihd.umkc.edu/

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In this episode, we talk with Vicky Davidson, Executive Director of Missouri Developmental Disability Council located in Jefferson City. DD Councils are federally funded to support programs that promote self-determination and inclusion of people with developmental disabilities in their communities.

Vicky shares her professional journey in the field from working in direct service to her leadership role at the DD Council. We learn about the initiatives of the Missouri DD Council and her work promoting emergency preparedness for people with disabilities and their families. 

Resources in this episode: 

  • MO Developmental Disabilities Council https://moddcouncil.org/
  • MO Adult Abuse and Neglect Investigations System Map https://ihd.umkc.edu/ihd-programs/health-and-wellness-promotion/mapping-the-missouri-adult-abuse-and-neglect-investigation-systems/
  • MARC Personal Preparedness Inventory https://www.marc.org/Emergency-Services-9-1-1/Preparedness/Community-Resilience/Personal-Preparedness-Inventory
  • Partners in Policy Making https://moddcouncil.org/partners-in-policymaking/schedule-dates/

For more information about the Missouri UCEDD at UMKC-Institute for Human Development visit https://ihd.umkc.edu/

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In this episode we talk with Lea Ann Lowery, occupational therapist and Missouri LEND faculty. LEND is located at University of Missouri at the Thompson Center in Columbia and its purpose is to prepare graduate students for future work in the field of developmental disabilities.

Lea Ann talks about her journey into the field of occupational therapy and how OT supports community inclusion for people with disabilities. She shares her particular devotion to drowning prevention for kids with autism and how she established inclusive swim lessons in her community.

Resources mentioned in this episode:

  • Missouri LEND Program, TIPS for Kids - https://thompsoncenter.missouri.edu/autism-training/tips4kids/
  • MU School of Health Professions - https://healthprofessions.missouri.edu/personnel/lea-ann-lowery/
  • Thompson Center for Autism in Columbia, MO - https://thompsoncenter.missouri.edu/

For more information about the Missouri UCEDD at UMKC-Institute for Human Development visit https://ihd.umkc.edu/

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In our first episode we talk with Dr. Connie Brooks, the Director of the Missouri LEND located at University of Missouri at the Thompson Center in Columbia. LEND’s purpose is to prepare graduate students for future work in the field of developmental disabilities.

In her interview, Dr. Brooks shares her own professional journey in the field of developmental disabilities, how the LEND program prepares future professionals to work with people with disabilities, and her views on women in leadership.

Resources mentioned in this episode:

  • Missouri LEND Program, TIPS for Kids - https://thompsoncenter.missouri.edu/autism-training/tips4kids/
  • TIPS for Kids Facebook https://www.facebook.com/TIPS4KidsMoLEND
  • Thompson Center for Autism in Columbia, MO - https://thompsoncenter.missouri.edu/

For more information about the Missouri UCEDD at UMKC-Institute for Human Development visit https://ihd.umkc.edu/