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April 2025 I Volume 11 I Edition 4 |
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AUCD Network Story Submission
Share a story of impact from your Center/Program to help raise awareness of the AUCD Network and the impact it has on the lives of people with disabilities, their families, and communities. |
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AUCD 2025 Conference Transitions from In Person to Virtual
The AUCD 2025 Conference Committee is transitioning this year’s Conference to a virtual format. This decision was made with the hope to accommodate as many attendees and presenters as possible, as some universities maintain travel and expenditure restrictions. While AUCD was looking forward to gathering in person once again, we believe holding the Conference virtually will ensure that as many researchers, practitioners, professionals, policymakers, trainees, and advocates can still come together to advance our collective mission.
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All Means All: The Story of Liz Weintraub
When Liz Weintraub sat down to write All Means All: My Life in Advocacy, it wasn’t just to put words on a page, it was to honor a dream and prove something deeply important: that people with intellectual disabilities can do anything they set their minds to. Her inspiration came from home. “My dad inspired me,” Liz says with pride. “He wrote two books, and I wanted to be like him.” It was more than just following in his footsteps. It was about making sure her voice, and the voices of people like her, were heard. For Liz, the power of storytelling isn’t just in sharing her life, it’s a reminder to others that they matter too. |
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IDD Health Matters Features AUCD's Liz Weintraub on Health Equity, Plain Language & Self-Advocacy
In this powerful episode of IDD Health Matters, Dr. Craig Escudé sits down with renowned disability advocate Liz Weintraub to explore what true health equity looks like for people with intellectual and developmental disabilities (IDD). Liz, a senior policy specialist at AUCD, brings her lived experience and professional expertise to the conversation—sharing insights on advocacy, accessible healthcare, and the importance of plain language in medical settings. |
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Leading Autism Organizations Release Joint Statement on Upholding Scientific Integrity and Supporting the Autism Community
As national organizations dedicated to advancing the well-being of Autistic individuals, the Autistic Self Advocacy Network, Autism Society of America, Autism Speaks, The Arc of the United States, Autistic Women and Non-Binary Network, Autistic People of Color Fund, the Association of University Centers on Disabilities (AUCD), and partners across the disability and public health sectors stand united in our call for science-based decision-making and increased investment in the research, programs, and services the Autism community needs to live fully.
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The UCEDD at OHSU has announced two new leadership appointments. Dr. Emily Quinn has been named Associate Director, bringing expertise in language interventions for children with developmental disabilities. Rachel Benson, MSW, joins as Assistant Director, with a strong background in public health and disability services. Congratulations to both on their new roles. |
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The 2025 Extraordinary Service Awards recognize staff members who have made outstanding contributions to the College of Education & Human Development through their dedication, initiative, achievements, enthusiasm and attitude in their work. Nominations are submitted by faculty or staff in the College of Education and Human Development. Robin Miller has exemplified extraordinary service by stepping up to oversee the day-to-day operations of the Center on Disability and Development, ensuring seamless continuity across all of the CDD projects. |
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The Developmental Disabilities Network Journal issues this urgent call for papers at a pivotal and precarious moment for the disability community in the United States. The proposed elimination of University Centers for Excellence in Developmental Disabilities (UCEDDs), State Councils on Developmental Disabilities, Protection & Advocacy organizations, and other essential programs like LENDs, and IDDRCs represents an existential threat to the infrastructure that supports individuals with developmental disabilities, their families, and the professionals who serve them. The impact of these proposed cuts would be devastating, unraveling decades of progress in promoting community living, inclusion, and self-determination for people with disabilities. |
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Connecting in Cincinnati: A Warm Welcome to AUCD Leadership
The UCCEDD was honored to host the AUCD Director’s Meeting this April in Cincinnati, welcoming 70 directors and colleagues from across the country. We were thrilled to share highlights of our research, showcase our LEND program, and provide a guided tour of Cincinnati Children’s Hospital. It was a meaningful opportunity to exchange ideas, foster connections, and spotlight the work happening here in Ohio.
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The lab of Waisman Center director, Qiang Chang, PhD, professor of medical genetics and neurology, has received $1 million in funding from the Department of Defense to study the dysfunction of astrocytes, a key brain cell that supports neurons, in Rett syndrome. With these funds, Chang’s lab will study how calcium dysregulation in astrocytes contributes to symptoms in RTT.
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Researchers from the Institute for Disability Research, Policy & Practice recently found that 80 percent of adults with disabilities nationwide reported having at least one of 11 chronic health conditions. Many of them could be categorized as preventable, manageable and even curable. Their work was intended to inform public policymakers on the greatest needs in the disability population. “Prevalence of Chronic Health Conditions Among People with Disabilities in the United States” was written by Audrey Juhasz, PhD and Rachel Byers, MPH. It is available for free through April 20 in Archives of Physical Medicine and Rehabilitation.
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Research from the Pediatric Neuromodulation Lab of Bernadette Gillick, PhD, MSPT, PT, at the Waisman Center showcases that evidence-based assessments for cerebral palsy (CP) are helping to improve diagnostic timelines and access to therapies and interventions. These assessment pathways, recommended by clinical guidelines published in 2017, were intended to help facilitate earlier CP diagnoses. |
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The Kansas University Center on Developmental Disabilities has changed its name to the Kansas University Center on Disabilities (KUCD) to reflect its broader commitment to all people with disabilities. KUCD’s updated mission focuses on building inclusive communities through research, education, and partnerships. Its new vision centers on removing barriers and advancing social justice so everyone can live fulfilling, self-determined lives. |
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In 1967, almost 200,000 people with intellectual and developmental disabilities (IDD) lived in large state institutions. Starting in 1981, the Medicaid Home and Community-Based Waiver helps people with IDD live with family or in small community homes. This Data Byte shows the decrease in people living in large state and non-state institutions between 1998 and 2020. Currently, about 85,000 people live in institutions. States should reduce this number because research shows people in smaller homes are happier and have more control over their living situation.
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As part of the Ulu A`e Transitions project in the College of Education Center on Disability Studies (CDS), students from King Intermediate School visited classrooms at Kāneʻohe Elementary and Ben Parker Elementary to read books out loud to 178 students in grades K–2 last October and December. Based on their experience, King Intermediate is continuing to read aloud in additional elementary schools during Spring 2025. |
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Congrats to Oliver Kaneb, winner of the Student Leadership Award, and Jackson McGinnis, recipient of the Director’s Award! Both students exemplify the values and spirit of the PATHS Program—leading, inspiring, and making a difference.
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The Autism Plan of Georgia envisions a future where all children with autism and related disorders have access to high-quality, family-centered, comprehensive, and coordinated services and supports. The Center for Leadership in Disability, housed within the School of Public Health at Georgia State University, was awarded the Georgia Autism Planning Grant to help make this vision a reality. In collaboration with the Autism Advisory Council, CLD developed a structured framework for the plan, with the annual Autism Conference and Expo of Georgia emerging as a key initiative. |
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The City of College Stated presented the Developmental Disabilities Awareness Month Proclamation at the city council meeting on March 27. Developmental Disabilities Awareness Month (DDAM) was established by President Ronald Reagan in 1987 and is observed annually in March. The 2025 theme is "We're Here All Year," emphasizing that people with developmental disabilities should be recognized and supported every day, not just in March. |
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The Vanderbilt Kennedy Center (VKC)(TN IDDRC, UCEDD, LEND) recently received a grant from the WITH Foundation to increase the use of its IDD Toolkit by health care clinicians, adults with intellectual and developmental disabilities (IDD), and family members as well as support person. The new project is called Boosting the Use of the IDD Toolkit to Enhance the Health Outcomes for Adults with IDD. |
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On April 1st an interdisciplinary group of six ArizonaLEND Trainees and two faculty members traveled to Phoenix to meet with state senators and representatives. ArizonaLEND provides this opportunity annually, giving our cohort members firsthand, in-person advocacy experience. The trainees prepare in advance of meetings to educate on what our professions do, the people we treat and support, and the impact ArizonaLEND has in our state. |
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Boyce Leads L’Arche Twin Cities
When Bryan Boyce (Minnesota LEND 2020-21) took on the executive director/community leader role at L’Arche Twin Cities, in addition to running his Cow Tipping Press literary writing classes for learners with developmental disabilities, the jobs had some obvious similarities. Both organizations incorporate the talents of people with and without disabilities, for example. |
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“The more we learn about how benign active tactile sensations like stimming are processed, the closer we will be to understanding self-injurious behavior,” said Emily Isenstein, PhD (’24), LEND Trainee, Medical Scientist Training Program trainee at the University of Rochester School of Medicine and Dentistry, and first author of the study in NeuroImage that provides new clues into how people with autism process touch. “By better understanding how the brain processes different types of touch, we hope to someday work toward more healthy outlets of expression to avoid self-injury." |
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2025 Trainee Policy Survey
The AUCD Policy Team is partnering with Brandeis University’s Community Living Policy Center to create training, networking, and mentoring opportunities for trainees. As part of this project, AUCD is looking to learn more about our trainee's experience and interests in public policy. Current and former trainees are welcome to submit the survey. The deadline for completing this survey is Friday, April 25.
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Join Think College for IPSE Day
On Monday, May 1, Think College will host their annual IPSE Day. IPSE Day (or Inclusive Postsecondary Education Day) is a day to raise awareness and spread the word about inclusive postsecondary education (IPSE) options for students with intellectual disabilities.
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Former directors of the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) are sounding the alarm: ongoing staffing and funding cuts are threatening life-saving programs that prevent birth defects, support children with developmental disabilities, and provide critical care for conditions like hemophilia and sickle cell disease. NCBDDD’s research and interventions have saved thousands of lives and billions in healthcare costs — but its future is now in jeopardy. We can’t afford to lose this vital public health infrastructure. Protecting our most vulnerable must remain a national priority. Source: The Atlanta Journal Constitution
Contributors: José Cordero, Coleen Boyle and Edwin Trevathan, Former directors of the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) |
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A new Scientific American article explains why autism diagnoses in the U.S. have steadily increased: not because of a sudden epidemic, but due to broader diagnostic criteria, better awareness, and improved screening. Though some point to environmental causes, experts say autism is largely genetic—up to 90% heritable—and the rise reflects how we identify, not how often it occurs.
Source: Scientific American
Contributor: Annette Estes, Director, Autism Center at the UW UCEDD |
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Last Chance! Join the Movement for Disability and Healthcare Equality as a Wiki Scholar & Scientist!
Wednesdays, April 30 – June 18, 2025, 1:00 PM – 2:00 PM ET
Thursdays, May 1 – June 19, 2025, 12:00 PM – 1:00 PM ET
Wiki Education is offering a free 8-week virtual course focused on improving Wikipedia’s coverage of healthcare for adults with developmental disabilities. Participants will learn how to edit Wikipedia with guidance from an expert instructor—no prior experience required! This is a unique opportunity to contribute impactful, evidence-based information to one of the world’s most widely used resources. We especially encourage adults with disabilities and those working in healthcare, research, or advocacy to apply. Questions? Contact Melissa at melissa@wikiedu.org or Will at will@wikiedu.org |
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CTSA Engaging Individuals with Disability in the Research Process Working Group: Adding Meaningfulness to Research
Friday, May 9, 2025, 2:00 PM – 3:00 PM ET
The CTSA Engaging Individuals with Disability in the Research Process Working Group will be hosting a three-part webinar series in May and June. This webinar is intended for investigators, individuals with lived disability experience, research administrators, journal editors, and NIH or foundation staff. The objective of the webinar is to inform and inspire participants to include individuals with lived experience as part of investigative research teams, specifically focusing on how this can improve the science and meaningfulness of the research for the populations being studied. Presented by Daniel Armstrong, PhD, University of Miami Mailman Center for Child Development and Miami CTSI and Rodney Samaco, PhD, AUCD. |
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2025 START National Training Institute
May 13-15, Virtual
Everyone is invited to register for the virtual START National Training Institute on May 13-15, 2025, hosted by the National Center for START Services, part of the Institute on Disability at the University of New Hampshire. We welcome anyone who wants to improve the lives of people with intellectual/developmental disabilities and mental health needs (IDD-MH). Whether you've been a part of the START network for years or just want to learn more about our START model, we'll have something for you at SNTI 2025. The annual SNTI brings together a wide-ranging community including but not limited to professionals and providers, researchers and policy makers, people with lived experience of IDD-MH, caregivers, and family members. |
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FCIC Employment Virtual Conference - Talent Actualized!
Tuesday, May 20, 2025, Virtual
Florida Center for Inclusive Communities (FCIC) Employment Virtual Conference is an online interactive training opportunity for rehabilitation and employment professionals, educators, employers, policymakers, youth and adults with intellectual and developmental disabilities (I/DD), family members, and anyone interested in promoting successful employment for individuals with I/DD. The conference is held online over the course of one day and offers sessions tailored to meet the needs and interests of a diverse audience.
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Items may be submitted for consideration via the AUCD Public Promotion Page. Submissions are due on the second Friday of the month. AUCD 360 is promoted on the last Friday of the month. |
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AUCD | 1100 Wayne Avenue, Suite 1000 | Silver Spring, MD 20910 |
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This newsletter is in part supported by the Administration on Community Living (ACL) through a technical assistance contract for the URC and the Centers for Disease Control and Prevention (CDC) for a National Professional Organization for Persons with Developmental Disabilities. The content of this material does not necessarily reflect the views and policies of any federal agency. No official support or endorsement by federal agencies is intended not to be inferred. |
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