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March 2024 I Volume 10 I Edition 3
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Disability Policy Seminar 2024
April 8-10, 2024, Washington, DC
The Disability Policy Seminar is an annual federal legislative conference co-sponsored by The Arc, Autism Society, American Association on Intellectual and Developmental Disabilities, Association of University Centers on Disabilities, National Association of Councils on Developmental Disabilities, United Cerebral Palsy, and Self Advocates Becoming Empowered. The Disability Policy Seminar strengthens our federal advocacy efforts by providing training, learning opportunities, and updates, and opportunities to visit their Members of Congress. The full schedule for the 2024 Disability Policy Seminar is now available online.
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Oklahoma LEND Graduate's Non-Profit Nationally Recognized
Jeanette O'Hara is an OK LEND 2022 graduate and Founder/Executive Director of the nonprofit, Will's House, located just outside Tulsa in Jenks, Oklahoma. Will's House serves as a specialized respite option that supports full time caregivers of children and young adults with medical needs or intellectual/developmental disabilities. Jeanette's approach is simple yet profound: "What do you need? How can we help you?" This philosophy reflects a commitment to addressing the diverse and often overlooked gaps
in services for caregivers and families.
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Pacific Center in Human Security: Rebranding of AS UCEDD and Milestone
On January 31, 2024, the American Samoa University Center of Excellence in Developmental Disabilities (AS UCEDD) officially rebranded and changed its name to the Pacific Center in Human Security (PCHS). The Center held a two-day opening event to commemorate a 30-year milestone so the community could join, celebrate, and learn more about the programs, projects, and initiatives PCHS is currently working on. Using a human security approach when strategizing and collaborating with innovative solutions will better focus on
the root challenges of our geographically isolated and vulnerable community and help uncover systemic issues amongst the disability and aging community in the territory and the Pacific.
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Vanderbilt Kennedy Center (TN IDDRC, UCEDD, LEND) Researcher and Health Equity Champion Arie Nettles Retires
Vanderbilt Kennedy Center (TN IDDRC, UCEDD, LEND) researcher and longtime health equity champion Arie Nettles has retired from Monroe Carell Jr. Children's Hospital at Vanderbilt. As a psychologist and professor of Clinical Pediatrics at Monroe Carell Jr. Children's Hospital at Vanderbilt, her entire career has been spent ensuring the well-being of pediatric and adolescent patients with intellectual and developmental disabilities, autism and cleft
craniofacial disorders.
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2024 Developmental Disabilities Day at the Legislature Reflection
Each year, the Maryland Developmental Disabilities (MDD) Coalition sponsors Developmental Disabilities Day at the Legislature (DD Day), an opportunity for participants to educate state legislators in the capital on crucial issues affecting individuals with intellectual and developmental disabilities (IDD), their caregivers and their families.
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Advocating for Change: Derrick Willis' Outbound Adventure
Derrick Willis is a US Outbound Fellow in the FY2021 Professional Fellows Program (PFP) on Inclusive Civic Engagement. This program is sponsored by the US Department of State’s Bureau of Educational and Cultural Affairs and is administered by the Institute for Community Inclusion (ICI) at the University of Massachusetts Boston in partnership with Humanity & Inclusion (HI). The following blog post was contributed by guest author Derrick Willis on his Outbound experience to Tanzania.
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Exploring the Intersectionality of Ability, Race, & Religion
Dr. Nicholas Wright and Maria Kemplin, staff at the University of Kentucky Human Development Institute, received a University of Kentucky Office for Institutional Diversity Award to support programs that are student-centric and foster collaboration through partnerships that address the important of diverse views and cultures. In partnership with the Martin Luther King Center and the Disability Resource Center, staff will explore the intersectionality of ability, and race.
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Impact: New Issue, New Podcast
The new issue of Impact, ICI's flagship publication, is about disability rights and disability justice; many of the articles are written by people with disabilities, including Alice Wong. And this issue unveils a new podcast called Impact, The Conversation.
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Medical and Dental Curricula on IDD: Training Inclusive Providers
Past research has shown that many medical and dental students do not learn about IDD in school. A recent study conducted by the WITH Foundation, AUCD and UC-LEND, sheds more light on how medical and dental schools are teaching their students about how to care for patients with IDD. Read the plain language summary to learn more!
Ex. A recent study conducted by the WITH foundation, AUCD, and UC-LEND highlights the importance of teaching medical and dental students about caring for patients with IDD and including more self-advocates in this training. Read the plain language summary to learn more!
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Missouri UCEDD Launches New Training on Traumatic Brain Injuries
Brain injury is more common than you might think. Every brain injury is different in terms of symptoms, affected areas of the brain and the outcome. The University of Missouri-Kansas City’s Institute for Human Development, the University Center for Excellence in Developmental Disabilities for the state of Missouri, has just launched a new free training to raise awareness of traumatic brain injuries - or TBIs. It highlights symptoms, treatments and provides prevention strategies.
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“Exploring Different Brains” Podcast
Mailman Center for Child Development's own Shelly Baer and Jairo Arana were guests of Dr. Hackie Reitman’s podcast “Exploring Different Brains” explaining Project S.A.L.T. Creating Self-Advocate Leaders.
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The Importance of Testing
It's testing season in school, but students with disabilities still aren’t participating in learning assessments at pre-pandemic rates. To help spread the word, ICI's National Center on Educational Outcomes created videos to help families understand why tests help students show what they learned and for schools to know what students need.
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University of Alaska Center for Human Development's Kelley Hartlieb Travels as PFP Outbound Fellow to Kenya
Kelley Hartlieb, our ProFellows & Disability Justice Initiatives Project Coordinator at Alaska CHD, just returned from her US Outbound Fellowship in Kenya. She worked with Spring 2023 ProFellows Erick Sande Oduor from United Disabled Persons of Kenya to enhance disability inclusion in Kenya's budgetary process. Kelley shared, “The Outbound was impactful and enriching, finding passionate partners abroad has us thinking about collaboration opportunities.”
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ME UCEDD Goes to White House to Highlight Impact of Federal Initiatives on Maine's Disability Community
On March 14, 2024, Alan Cobo-Lewis, associate professor of psychology and director of the University of Maine Center for Community Inclusion and Disability Studies (ME UCEDD), was invited to attend Communities in Action: Building a Better Maine, New Hampshire, and Vermont, in person at the White House complex. This meeting brought together federal figures with over three dozen local elected officials and community leaders working on behalf of their communities to create opportunities and improve people's everyday lives. Discussions highlighted federal initiatives, especially those funded by the American Recovery Plan Act (ARPA), Inflation Reduction Act, and Bipartisan Infrastructure Investment and Jobs Act.
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NH-ME LEND Spring Kickoff: Organizing to Influence Your State's Policy
In late January, NH-ME LEND gathered for the annual spring kick-off event: Organizing to Influence Your State’s Policy. An inspiring keynote speaker, Ansley Peacock, followed by an informative panel discussion set the stage for the upcoming policy module, and the trainees’ participation in the upcoming Disability Policy Seminar (DPS) in Washington, D.C. Ansley Peacock is the Transition Initiatives Coordinator for New Hampshire Family Voices and Parent Information Center where she facilitates the YEAH Council (Youth for Education, Advocacy, and Healthcare). Additionally, she collaborates with stakeholders through her work with the Youth Healthcare Transition Services Project to improve systems and outcomes for youth through training and
outreach. Ansley described how her personal and pro
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IDDRC Research Brief: Providing Support for Families Affected by Rare Genetic Diseases
The RFK IDDRC unveils its groundbreaking "Operation IDD Gene Team" program developed by Dr. Steven Walkley. This multidisciplinary initiative supports families affected by rare genetic diseases causing intellectual & developmental disability (IDD).Operation IDD Gene Team brings together families, physicians, and scientists to foster understanding and empowerment. Through collaborative meetings, families share their experiences, physicians discuss clinical implications, and scientists provide insights into gene biology.
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2022-2024 AUCD Emerging Leader Board Member
Application Deadline: March 29, 2024
The AUCD Board of Directors is seeking nominations from the network's Emerging Leader community to fill the Emerging Leader Board Member voting position on the Board. (*Note that this is not the same as the Emerging Leader Intern.) The Emerging Leader Board Member will be a voting member on AUCD's national Board of Directors and represent the
Association and broader AUCD network. This position will bring the voice and perspective of the AUCD Emerging Leader Community, including but not limited to trainees and early career professionals in the network.
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Connecting Communities
For years, the MN UCEDD/LEND has promoted autism awareness at events, particularly in underserved communities, to encourage families to act early and connect with critical services. "I call it surfing the waves of life," said a MN LEND fellow and parent.
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Sharper Tools for Cutting Bias
Autism prevalence is reported in boys at nearly four times the rate in girls, and researchers have long suspected gender bias plays a role in the disparity. Casey Burrows (MN LEND 2018–19), an assistant professor in pediatrics and a clinical psychologist at the University of Minnesota Medical School, investigates.
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Announcing New Grassroots Advocacy and Action Coalition (NAAC) Recruiting Advocates and Family Leaders – Apply Now
As part of AUCD’s workplan, we are recruiting three disability leader advocates (self-advocates) and three family leaders to help build awareness of activities to improve access to HCBS and engage in leadership opportunities. These individuals will be identified through a competitive application process and will be compensated directly for their time. They will work with AUCD’s Home and Community Based Services (HCBS) Special Interest Group (SIG), a core workgroup (stakeholder engagement, knowledge translation, and quality) and with their UCEDD and/or LEND program to spread information about the work of the NAAC. Applications must be received by April 15th. The project starts May 1 and ends September 30, 2024. Please apply at this link, and reach out to Sarah Swanson (sarah.swanson@unmc.edu) for any questions.
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Pregnancy Decisions App Project
The Pregnancy Decisions App Project, led by Willi Horner-Johnson at Oregon Health & Science University (OHSU), is looking for people to participate in their research project about pregnancy and disabilities. The goal of the project is to create a phone app for people with developmental disabilities, including autism and intellectual disability, to help make decisions about pregnancy.
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9th International Research Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorders
April 11-14, 2024, Seattle, WA
Despite thousands of published articles on FASD, limited research focuses specifically on adolescents and adults with FASD. As individuals diagnosed with FASD age, the "need to know" across a broad spectrum of areas continues to be critically important for identifying clinically relevant research questions and directions that will impact their day-to-day function and health outcomes. With a prevalence rate of 1 in 20 in the United States, FASD is highly relevant to addiction treatment providers.
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The 2024 National Conference on the Value of Play: THE FUTURE OF PLAY
April 16-18, 2024, Bloomington, IN
The Play Conference, as it is commonly known, is an annual educational conference presented by the US Play Coalition. The latest research and practices in the field of play are presented at the conference, which brings together leading play researchers, educators, health scientists, park and recreation professionals, landscape architects, designers, planners, business and community leaders, psychologists, physicians, and parents from across the globe.
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8th Annual Charting the LifeCourse Showcase
April 23-25, 2024, Kansas City, MO
Come together with the network of advocates, families, and professionals to explore how CtLC weaves together personal growth, community engagement, policy advancements, and technological innovations to promote self-determination and good lives for all.
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2024 START National Training Institute (SNTI)
May 6, 2024, Philadelphia, PA
The annual START National Training Institute (SNTI) serves as the premier hub for the exchange of innovative best practices in IDD-MH (intellectual and developmental disabilities and mental health needs) grounded in the philosophy and principles of the START model (including assessment, treatment, and crisis prevention and intervention services). The SNTI brings together a diverse community including but not limited to professionals & providers, researchers, policy makers, people with lived experience of IDD-MH, and family members.
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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, Maternal and Child Health Bureau (MCHB) through a technical assistance contract for the ITAC, and 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 nor should be inferred.
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