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April 10, 2024
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Announcements
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Consensus Statement on Healthcare for Youth With Neurodevelopmental Disabilities Published in Pediatrics
An interprofessional and community-engaged panel of experts has published the first peer-reviewed consensus statement establishing healthcare standards for youth with neurodevelopmental disabilities in the journal Pediatrics. The Supporting Access For Everyone (SAFE) Initiative was launched by the Developmental Behavioral Pediatrics Research Network and Association of University Centers on Disability to address these health disparities. An interprofessional consensus panel of healthcare experts, adults with NDDs, and caregivers convened to guide the process of integrating available research evidence with testimony received through a public forum of 40 presenters from across the country. A systematic consensus-building process was used to derive 10 statements across five key domains.
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Fostering Joy for Audiologists: Why and How to Embrace a "Joy Lens" in Working with Families
Thursday, April 11, 2024, 8:00 - 9:00 PM ET
This presentation will highlight Fostering Joy, a project that brings together families of children deaf or hard of hearing (DHH), DHH leaders, and professionals working to support children who are DHH and their families. Fostering Joy is aimed at promoting positive engagement in families with DHH children, celebrating “magic moments” of connection and growth, and bolstering professionals' ability to emphasize joy in the work that they do with children who are DHH. Audiologists and audiology trainees are at the heart of “setting the tone” for families. Join this workshop to learn about the rationale for and strategies to infuse JOY into the work that you do.
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New Grassroots Advocacy and Action Coalition (NAAC) Recruiting Advocates and Family Leaders
Application: April 15, 2024
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 15. 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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AIR-P Presents: Introduction to Plain Language Writing for Academics and Researchers
Tuesday, April 16, 2024, 4:00 - 5:00 PM ET
Celebrate Autism Acceptance Month with this Autistic Self Advocacy Network and Autism Intervention Research Network on Physical Health (AIR-P) April webinar! Get an overview of plain language writing for people who may be more used to writing in academic language. Attendees will learn the principles of plain language writing and have a chance to put them into practice with interactive exercises. There will also be time for questions and answers.
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Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities
April 17-19, 2024, InterContinental Hotel, Kansas City, MO
The Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities is one of the premier conferences for behavioral scientists conducting research on intellectual and developmental disabilities. It has a rich history that started in Gatlinburg, Tennessee in 1967, and the name of its original location remained. Each year, Gatlinburg Conference brings together scientists from around the world to gather to discuss research and collaborations in the field.
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The AUCD Employment page focuses on job and fellowship opportunities at AUCD, within our Network, and at organizations affiliated with AUCD. If you think your organization is an affiliated partner, please contact Anna Costalas. Positions will remain on the website for 90 days.
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Funding
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Deadline: June 4, 2024
Award Ceiling: $1,000,000
To enhance Newborn Screening (NBS) practice, CDC announces a new NOFO for a public health laboratory to establish a NBS Center of Excellence that will 1) develop infrastructure to implement existing, advanced technologies to expand NBS system capacity, 2) use advanced technologies as second and third tier testing platforms to optimize screening performance, and 3) incorporate bio-informatics to analyze complex biochemical and molecular data. Over the four-year project, the recipient will pilot methods to enhance NBS practices in public health laboratories, collaborate and share findings with the NBS community, and partner with CDC subject-matter experts on data harmonization and modernization efforts. This project will better position NBS programs to adapt to
advanced technologies and meet increasing demands within NBS.
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Deadline: June 5, 2024
Award Ceiling: $250,000
This funding announcement seeks to broaden the knowledge base of the Aging Network around ACL priorities, such as caregiving, housing, diversity, equity, and inclusion, as well as other critical issues. The primary goal is to increase ACL and the Aging Network’s understanding of how AAAs, Tribal Organizations, and other agencies as appropriate, are adapting, enhancing, and expanding services and supports to meet current and future needs of older adults and their caregivers.
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Deadline: June 7, 2024
Award Ceiling: $600,000
Under this particular DRRP funding opportunity, applicants must propose to conduct development and knowledge translation activities to facilitate the efficient development and distribution of mobile applications for use by people with disabilities. Mobile applications developed and distributed under this priority must be used to improve outcomes among people with disabilities in one or more of NIDILRR’s outcome domains: (1) community living and participation, (2) health and function, and (3) employment. This grant will have a 60-month project period with five 12-month budget periods.
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Deadline: June 21, 2024
Award Ceiling: $950,000
The Supporting Fetal Alcohol Spectrum Disorders (FASD) Screening and Intervention program helps reduce alcohol use during pregnancy and improves outcomes for children with FASD nationwide, especially in communities where there’s a high rate of binge drinking during pregnancy. The program focuses on educating Primary Care Providers (PCPs) and increasing the use of screening, intervention, and referral processes for high-risk pregnancies. The program’s goals include increasing PCPs’ knowledge of the risks of drinking alcohol during pregnancy as well as promoting recommended screenings, interventions, and referral approaches.
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Deadline: July 22, 2024
Award Ceiling: TBD
The Rare Diseases Clinical Research Network (RDCRN) is intended to advance and improve diagnosis, management, and treatment of numerous, diverse rare diseases through highly collaborative, multi-site, patient-centric, translational, and clinical research with an emphasis on early and timely identification of individuals with rare diseases and clinical trial readiness. The DMCC facilitates and supports the activities of each individual Rare Diseases Clinical Research Consortium (RDCRC) along with trans-network activities that broadly facilitate the advancement of rare disease research via four avenues: administrative support, data management support, clinical research support and patient engagement, and broad dissemination of information. The RDCRCs will
continue conducting research conducted under a separate NOFO.
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Resources
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ODEP’s new hub of resources is here to empower people with disabilities and their families to plan for the future, make decisions and succeed in competitive integrated employment (CIE). These webpages provide resources to support steps to increase the participation of people with disabilities in CIE. Whether you’re an individual with a disability or family member, employment service provider, state agency or employer our CIE Transformation Hub has practical resources for you.
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The Portfolio is a searchable, government-wide inventory of disability, independent living, and rehabilitation research. The purpose of the portfolio is to enable trend and data analysis across federal agencies, with a goal of aiding collaboration and coordination, as well as increasing transparency and visibility for the public and legislative stakeholders. The Portfolio includes data from the National Institutes of Health, National Science Foundation, Veterans Affairs, Administration for Community Living, and Centers for Disease Control and Prevention from fiscal years 2016 to 2023, with plans to add data from more years and agencies.
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March job numbers showed minimal changes for people with disabilities, according to today’s National Trends in Disability Employment (nTIDE) semi-monthly update issued by Kessler Foundation and the University of New Hampshire’s Institute on Disability (UNH-IOD). Despite small declines in the employment-to-population ratio over the past four months, employment remains at historically high levels for people with disabilities. The small gain in their labor force participation rate is a positive sign that people with disabilities are still engaging in the labor market by looking for work.
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UMass Chan and Temple Collaborative Rehabilitation Research and Training Center on Community Living and Participation Among Transition Age Youth with Serious Mental Health Conditions from Disadvantaged Backgrounds released two new episodes of the STAY Tuned podcast. In one episode, Can Avatars Help Young Adults Manage Alcohol Use Problems & Suicidal Thoughts, hosts interviewed a researcher developing and testing an app-based cognitive behavioral therapy intervention for young adults with alcohol misuse and suicidal thoughts who have visited the emergency department.
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On February 27th, the Center on Disability Studies (HI-UCEDD) welcomed over 750 attendees representing 12 countries from across the globe to Honolulu, Hawaiʻi, to the 39th Annual Pacific Rim International Conference on Disability and Diversity online and in-person. The ExceLens series highlights the valuable work of the UCEDDs within university systems, the community, and in the lives of people with disabilities across the lifespan and their family members
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Weekly news items may be submitted for consideration via the AUCD Promotion Request Form.
Submissions are due on Monday each week.
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AUCD | 1100 Wayne Avenue, Suite 1000 | Silver Spring, MD 20910
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This weekly newsletter is in part supported by the Administration for Community Living (ACL) through a technical assistance contract for the URC, the 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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