AUCD 360 - May 2020

May 13, 2020

AUCDigest:Network News: UCEDDs, LENDs and IDDRCs
May 2020  |   Volume 5 Issue 5
AUCD 360, News from Around the Network, Facebook  

  Central Office News

  Network Awards

  Network News

  Emerging Leaders Voices

  Community Updates

  Upcoming Events 

 

 AUCD Central Office News

 

Call for Proposals AUCD 2020

Call for Proposals AUCD 2020Deadline June 5, 2020

The AUCD Conference is one of the nation's premier places to highlight your work. Over 200 different presentations will be accepted to the conference in several different types of sessions, formatted for maximum visibility and interaction with attendees. Proposals are encouraged from students, self-advocates, family leaders, clinicians, and researchers in over 25 topics. Don't miss your chance: submit a proposal today!

 

Emerging Leaders: Submit your ADA video and get featured on Tuesdays with Liz
Emerging Leaders: Submit your ADA video and get featured on Tuesdays with Liz Deadline: June 11

This year, we are celebrating the 30th anniversary of the Americans with Disabilities Act! The Americans with Disabilities Act (ADA) affects everyone, which is why we celebrate the anniversary of its signing every year. AUCD current and former trainees are encouraged to submit a brief video sharing what the ADA means to them. Winners may be featured on an episode of Tuesdays with Liz. Learn more...


AUCD's National Center on Disability in Public Health Shares COVID-19 Emergency Response Information

AUCD's National Center on Disability in Public Health Shares COVID-19 Emergency Response InformationOne of the most important tasks for AUCD's public health team and the entire network right now is sharing accurate, timely information on COVID-19 for the disability community. AUCD's Network Public Health Webinar Series on COVID-19 did just that, together with programs and centers across the network. This 4-part webinar series, hosted by AUCD's National Center on Disability in Public Health, reviewed timely public health information on what we currently know on disability inclusion as it relates to this emerging issue, reaching about 2,000 attendees through the live sessions. Read more... 

 

New Health Care Access and COVID-19 Resources!

New Health Care Access Resources!The Public Health is for Everyone Toolkit serves to increase the capacity of public health professionals to create programs that benefit entire communities, including people who have disabilities. The online toolkit provides resources to enhance planning efforts in key issue areas such as emergency preparedness, nutrition, obesity, health care access, accessibility, and more. Read more... 

 

Stories Needed about impact of COVID-19 on People with Disabilities

Stories Needed about impact of COVID-19 on People with DisabilitiesCongress is writing the next bill to respond to the needs of Americans in this crisis. In order for the needs of people with disabilities and their families to be addressed in the next bill, members need to hear about the real impacts. Often, a short personal story is helpful for them.  Read more... 

 

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  Network Awards


Dr. Meagan Orsag Receives Award

National Historic Recognition Project

Dr. Meagan Orsag, Associate Director of the Center on Disability and Development was nominated for the College of Education and Human Development Extraordinary Service Award and will receive special recognition at the Annual Staff Advisory Council Retreat later this spring. The extraordinary service award is issued as a one-time merit to staff who have successfully completed a special project of significant importance to warrant special recognition. Dr. Dalun Zhang, Director at the Center on Disability and Development nominated Meagan for her work on several projects including Aggie Disability Awareness, Educating Every Aggie and UDlize. Read more...

 


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  Network News


In Crisis, MN UCEDD/LEND Responds

In Crisis, MN UCEDD/LEND Responds

Responding to the COVID-19 pandemic, researchers and training specialists at the Institute on Community Integration (MN UCEDD/LEND) are launching several new ventures aimed at supporting people with disabilities through the crisis. Among other initiatives, ICI's TIES Center is offering free distance-learning content on its website for teachers and parents who support students with the most significant cognitive disabilities as they manage schoolwork online. Read More...

 

Communication is Vital: Learn how the WI UCEDD is helping pave the way for intubated COVID-19 patients

Communication is Vital: Learn how the WI UCEDD is helping pave the way for intubated COVID-19 patients

At the Waisman Center, home of Wisconsin's LEND, IDDRC, and UCEDD, clinicians in the Communication Aids and Systems Clinic (CASC) join a new international task force designed to help patients on ventilators communicate while intubated. CASC is one of 10 different specialty clinics within the Waisman Center and offers specialized services for those who benefit from augmentative and alternative communication aids (AAC). One clinician in CASC, Sarah Marshall, a speech-language pathologist (SLP), has been working with the international task force to develop free communication supports and tools for patients on ventilators due to COVID-19. Read More...

 

Kansas Autism Annual Conference Goes Virtual
Kansas Autism Annual Conference Goes Virtual
This year's Kansas Center for Autism Research and Training (K-CART) bi-annual conference Autism Across the Lifespan co-sponsored by Kansas LEND was quickly and successfully re-imagined to be held virtually on April 10th via zoom. LEND faculty members Leni Swails, Ph.D., Rene Jamison, Ph.D. and Skylar Bellinger, Pd.D. partnered with Matt Mosconi, Ph.D. and Sean Swindler of KCART to present on the unique challenges faced by individuals with ASD, their caregivers, and providers during the COVID-19 pandemic.
Read More...


Telehealth & You

Telehealth & You

Michigan Developmental Disabilities Institute (MI-DDI) has compiled COVID-19 resources to assist the community to protect the health and safety of at-risk populations. There are a number of plain and Spanish language resources, as well as resources aimed towards specific age groups, people with I/DD, and direct support professionals (DSPs). Read More...

 

Dr. Stough and a group of scholars and practitioners have been selected as a Disability and COVID-19 Working Group by the Natural Hazards Center

Dr. Stough and a group of scholars and practitioners have been selected as a Disability and COVID-19 Working Group by the Natural Hazards Center

The group includes 14 members from 9 universities and centers representing the 8 disciplines of: Communication, Disability Studies, Education, Educational Psychology, Psychology, Public Health, Special Education, and Social Work. The group includes 3 members representing minority groups, a student researcher, and all of our members themselves have or have family members with disabilities or special health care needs. The primary positions are similarly diverse and include researchers, teachers, practitioners, support personnel, and project directors. Read More...


Vanderbilt Kennedy Center (TN IDDRC, UCEDD, LEND) study seeks to improve social competence in adults with autism

Vanderbilt Kennedy Center (TN IDDRC, UCEDD, LEND) study seeks to improve social competence in adults with autism

Researchers from the Vanderbilt Kennedy Center (TN IDDRC, UCEDD, LEND) at Vanderbilt University Medical Center are investigating whether participation in a specially designed theatre program can improve social competence in adults with autism.iThe study, backed by $1.3 million in funding from the National Institute of Mental Health, is led by Vanderbilt Kennedy Center (VKC) investigator Blythe Corbett, Ph.D., professor of Psychiatry and Behavioral Sciences at VUMC, who established the SENSE Theatre intervention research program in 2009. Read More...

Empowering Supported Decision Making

Empowering Supported Decision Making

As part of their year-long leadership project, five long-term trainees from the Utah Regional LEND program (along with their faculty mentors) worked with the University of Utah Neurobehavior HOME Program to create three brochures to help spread the word about the benefits of Supported Decision Making (SDM). The team also sought to help shift the status quo from guardianship as the only option to self-advocacy and SDM as a viable, effective alternative. Read More...


New Mexico Early Cerebral Palsy Risk Detection and Intervention Task Force

New Mexico Early Cerebral Palsy Risk Detection and Intervention Task Force

The Institute on Development & Disability at Oregon Health & Science University (OHSU) UCEDD research team specializing in Assistive Technology was featured by Bloomberg News for their groundbreaking Brain-Computer Interface work. The REKNEW lab, led by researcher and UCEDD Co-director, Melanie Fried-Oken, Ph.D., CCC/Sp, specializes in developing technology to address communication needs for people with severe disabilities, such as locked-in syndrome. Read More...


The Boggs Center on Developmental Disabilities (NJ UCEDD/LEND) Develops Transition Timeline for Families of Young Adults

The Boggs Center on Developmental Disabilities (NJ UCEDD/LEND) Develops Transition Timeline for Families of Young Adults

The ability of young adults with developmental disabilities and their families to successfully navigate the transition to adult life and the various systems through which supports are available hinges upon clear and accurate information. The Boggs Center on Developmental Disabilities, New Jersey's UCEDD and LEND, created Transition to Adulthood for Young Adults with Developmental Disabilities: A Timeline for Parents to provide a one-page overview of considerations at different points throughout transition, national resources, and information about services in the state. Read More...


MMI Aids in Effort to Provide Free Communication Tools

MMI Aids in Effort to Provide Free Communication Tools

A Inclusive education policies are necessary to assist Georgians with developmental disabilities in reaching their full potential. Inclusive postsecondary education (IPSE) programs provide students with intellectual and developmental disabilities access to education not otherwise available. The Georgia Council for Developmental Disabilities (GCDD) hosts regular advocacy days at the Capitol during each legislative session. Read More...

 

WIHD Receives Delivery of Chromebooks for Children in Foster Care

WIHD Receives Delivery of Chromebooks for Children in Foster Care

WIHD's Child Welfare program extends its thanks to Staples of Elmsford, NY for helping secure delivery of Chromebooks for children in foster care. These devices were made possible through a grant awarded to WIHD by the Redlich Horwitz Foundation. We thank both Staples and Redlich Horwitz for recognizing the urgency of this need for our clients. WIHD's Tatiana Bracco is pictured accepting delivery of the laptops from Staples management. Read More...


New Hampshire Institute on Disability UCEDD Calendars and Bookstore

New Hampshire Institute on Disability UCEDD Calendars and Bookstore

For the past 20 years, the Institute on Disabilities has produced beautiful, full-color calendars featuring 13 original works of art coupled with inspirational quotes. Students, faculty, and staff are all welcome to submit.The New Hampshire UCEDD also sells many disability films in their bookstore, including Intelligent Lives, Including Samuel, and What About Kelsey? Read More...

 

 

WIHD Medical Professionals Help Special-needs childrent, their Parents During Pandemic

WIHD medical professionals help special-needs children, their parents during pandemic

WIHD was interviewed by Samantha Crawford of News 12 Westchester to highlight our use of telehealth services to protect thousands of patients with disabilities. Read More...

 

 

A Disability Should Not Invalidate a Person's Worthiness-Especially During a Pandemic

A Disability Should Not Invalidate a Person's Worthiness, Especially During a Pandemic

Read Dr. Nick Winges-Yanez' Op-Ed piece titled, "A Disability Should Not Invalidate a Person's Worthiness, Especially During a Pandemic". Within the article, Dr. Winges-Yanez shares how people with disabilities are being discriminated against during the COVID-19 pandemic. Read More...

 

Virtual Light It Up Blue! Proves a Success

Virtual Light It Up Blue! Proves a Success

The Munroe-Meyer Institute and Autism Action Partnership (AAP) collaborated on their first virtual Light It Up Blue! celebration on World Autism Awareness Day on April 2.The Facebook event, which took the place of the traditional event on the Bob Kerrey Pedestrian Bridge, included giveaways and a virtual party, as well as members of the MMI/AAP community connecting with each other via the organizations' Facebook pages. Read More...

 

Paths Program

Paths Program

The PATHS Program was an amazing growth experience for me. But I almost didn't even go. In fact, after visiting the PATHS open house day in Feb 2019, I told my mom that it looked like a nice program but the Texas A&M campus was way too big for me. Plus It would require me to navigate public transportation which I had never done before and I was terrified of doing it . But a week later I got in an argument with my little sister and I asked my mom where that PATHS application was! Now I am so glad I went ! It wasn't easy at first but Bridge 2 Career truly helped guide me into the right direction and grew in so many ways. Read More...

 

 


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  Emerging Leader Voices


During Unprecedented Times, Kansas LEND Emerging Leaders Take Action

During Unprecedented Times, Kansas LEND Emerging Leaders Take ActionThere was a call for action - and Kansas LEND trainees responded. As a statewide Stay at Home Order was announced in Kansas in response to the novel coronavirus outbreak, Kansas LEND trainees were quick to create and disseminate resources for Kansans with disabilities and their families.Collaborating across disciplines, Kansas LEND trainees sought to meet the diverse needs of individuals and families across Kansas. Gabbi Rao, an occupational therapy trainee and Josh Edwards, a social work trainee and self-advocate, created a coping resource for. Read more... 

 

MN LEND Fellows Use Their Training in COVID-19 Response

Alumni Update: JaeRan KimThe MN LEND Fellows at the Institute on Community Integration shared stories of how their work is being impacted by the pandemic: My team at the Minnesota Department of Human Services has become acutely aware of the need to prioritize, responding to urgent needs of people with disabilities and related stakeholders (like family, support staff, providers, and others) during this crisis above other once-priority projects. Our focus is on developing emergency policy solutions that make accessing disability services and maintaining disability services a priority for our state. Read more... 

 

 

NH-ME LEND Virtually Showcases Scholarship, Leadership, and Resilience

NH-ME LEND Virtually Showcases Scholarship, Leadership, and ResilienceOn May 1, 2020 twenty-one trainees from the 2019-2020 New Hampshire-Maine Leadership Education in Neurodevelopmental and Related Disabilities (NH-ME LEND) Program convened the first ever Virtual Capstone Poster Session and end of the year Celebration. Concluding the spring semester online, this dedicated group of trainees remotely collaborated with leadership partners to complete capstone projects throughout Maine and New Hampshire. Read more... 

North Carolina LEND Audiology Trainees Receive Poster Award at Annual Early Hearing Detection and Intervention Conference

North Carolina LEND Audiology Trainees Receive Poster Award at Annual Early Hearing Detection and Intervention ConferenceFour NC-LEND students from the Doctor of Audiology (AuD) program at the University of North Carolina at Chapel Hill received an award for ‘best poster' at the national 2020 Early Hearing Detection and Intervention (EHDI) conference in Kansas City, Missouri, in March. The ongoing project, which is focused on improving hearing screening in the neonatal intensive care unit (NICU), is a collaboration between NC-LEND and the North Carolina EHDI program, NC Division of Public Health. The LEND audiology trainees include Jane Khin, Shannon Muzio, Stephanie Ortega, and Katie Sobon. Read more... 

 

South Dakota LEND Participates in Legislative Session

South Dakota LEND Participates in Legislative SessionOn February 9th and 10th twelve SD LEND Trainees traveled to South Dakota's state capitol Pierre to observe policy in action. Dr. Marni Johnson Martin, SD LEND Training Director, states, "I am thrilled we are able to offer this opportunity to our LEND trainees as it gives them real-world experience with the legislative process. I feel they came away from the experience much more vested in the process and understand how truly important their voices are. I hope someday I will have the honor and privilege of voting for one of our trainees when they run for office. Read more... 

 

COVID19 Shifts Family Mentoring Experience

COVID19 Shifts Family Mentoring ExperienceVa-LEND trainees have always appreciated close interaction with their mentoring families through the Family Mentorship Experience (FME) program, a highlight of their time in Va-LEND. However, starting in March, due to the COVID-19 pandemic, in person visits were no longer feasible due to social distancing. Kate Flinn, FME Coordinator, reflects that "It's really challenging people to think out of the box about virtual connections and how to make them work. It's also challenging people to be creative in how they keep their kids engaged, while so many are now home with them 24-7." Read more... 

 

Alumni Update--Kristen Kessler (MN LEND, 2015-17), Pediatrician

Alumni Update--Kristen Kessler (MN LEND, 2015-17), PediatricianAs insurers lower barriers to telehealth amid the coronavirus pandemic, Kristen Kessler (MNLEND, 2015-17), MD, MPD, is making strides in supporting children with autism and other neurodevelopmental disabilities. A developmental-behavioral pediatrician, Kessler is now assessing children via telehealth for autism spectrum disorder, ADHD, Fetal Alcohol Spectrum Disorder, genetic disorders, sleep disorders, elimination disorders and complex neurodevelopmental and behavior disorders. She practices at HealthPartners Regions Behavioral Health in Lake Elmo, Minnesota. 
Read more... 

 

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  Community Updates


Research survey for rare disease patients and their families about impacts of COVID 19

Research survey for rare disease patients and their families about impacts of COVID‑19

The novel coronavirus pandemic is impacting people with rare diseases and their families. Those impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. Your responses may help researchers understand the impacts of COVID-19 on the rare disease community. The Rare Diseases Clinical Research Network (RDCRN) is conducting this study. The network is funded by the National Institutes of Health (NIH). It includes 23 research teams working to advance diagnosis and treatment of groups of rare diseases. The RDCRN's Data Management and Coordinating Center at Cincinnati Children's Hospital Medical Center is coordinating the study. Read more...

 

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 Upcoming Events

 

nTIDE Special Report - Implications of COVID-19
nTIDE Special Report

Friday, May 15, 2020, 12:00 p.m. - 1:00 p.m. ET

The coronavirus outbreak is affecting hundreds of thousands of people and having a growing impact on the economy and employment. During this special additional nTIDE Lunch & Learn, our team of experts will share their latest perspectives, based on data from a population survey released mid-month, on the coronavirus pandemic and its implications on employment, emerging bills and policies, and resources for the days ahead. Read More...

 

Equity in IECMHC Webinar Series
Equity in IECMHC Webinar Series
The purpose of the Equity in IECMHC Webinar Series is to promote equity through IECMHC by building awareness of the impact of institutional racism and other forms of bias on the experiences of children and families from marginalized communities and identifying policies and strengthening culturally responsive practices that reduce disparities and improve child outcomes. The series will consist of three additional webinars that build off previous webinars. Read More...

 

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  Submissions
Image of a button with an image of a document. News items may be submitted for consideration via the AUCD 360 Submission page. Submissions are due on the 4th Friday of the Month.

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This newsletter is in part supported by the Administration on Intellectual and Developmental Disabilities (AIDD) 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.