Developments Newsletter, Issue #1, February 2011

Welcome to DevelopmentsDevelopments is AUCD’s newsletter for MCHB-funded LEND and DBP programs.  Formerly known as LEND Links, Developments is published three times each year: in the beginning of the school year, the beginning of the second school semester, and at the end of the school year.  Developments strives to feature news, events, resources, and success stories from LEND and DBP programs and trainees throughout the AUCD and CAAI Networks.  It is an excellent resource for learning about the exciting work programs, faculty, staff, and trainees are doing and provides opportunities for information sharing and connecting.  Leave us a comment and let us know how you enjoy the new newsletter!

MCHB

Photo of Wendy Adam Questions and Answers with Gwendolyn “Wendy” Adam, New Maternal and  Child Health Bureau Training Branch Chief

Gwendolyn “Wendy” Adam was interviewed by Rebecca Carman of AUCD in which Dr. Adam provided answers to questions about her social work background, her experiences as the social work faculty in the LEAH program at Baylor College and how those experiences prepared her for her current position at MCHB, what drew Dr. Adam to MCHB and her aspirations for the training program, as well as leadership advice for the MCHB Training Grantee Network.

LEND and DBP News

Meaghan McHughAUCD Welcomes Meaghan McHugh, MPH, to Staff

Meaghan serves as Project Manager for the MCHB Cooperative Agreement, coordinating technical assistance for the LEND and DBP training programs through AUCD’s ITAC. In addition, she manages the LEND audiology grant program designed to expand training in infant and pediatric audiology, also funded by MCHB.

Elaine GabovitchPassionate Advocate Links Community to Shriver Center

Elaine Gabovitch, MPA, the mother of a child with an autism spectrum disorder (ASD), and a grassroots advocate for all families dealing with ASDs, is the director of family and community partnerships at the Eunice Kennedy Shriver UCEDD/LEND and an alumna and faculty member of the Center’s Leadership Education in Neurodevelopmental Disabilities (LEND) program.

Einstein’s Special Care Dentistry Unit Treats Vulnerable Population

For more than half a century, the Children’s Evaluation and Rehabilitation Center (CERC) at the Rose F. Kennedy Center at Einstein has been serving New York’s most vulnerable residents – children with intellectual and other disabilities.  The dentistry program is the only one of its kind in New York City – able to provide anesthesia through conscious sedation.  This permits individuals with severe developmental and behavioral problems to receive the dental care they need.

The Project DOCC Experience for LEND Trainees: Munroe-Meyer Institute

Project DOCC is a curriculum developed by parents of children with special healthcare needs whose goal was to inform physicians on the challenges faced by families that have children with chronic health conditions and disabilities.  Project DOCC is conducted as part of the Pediatrics Resident rotation at Munroe-Meyer Institute, the Nebraska UCEDD/LEND.  Recognizing the value of the program, LEND faculty and staff adapted and incorporated the same training components to fit into the LEND curriculum.  Many of the trainees have found that Project DOCC provides them with a first-hand perspective of what families with a child living with a chronic illness or disability deal with on a daily basis in that it takes them out of the clinic and into the home.

Tia NelisA New Perspective: Illinois LEND Includes a Self-Advocacy Discipline

The Illinois LEND program added self-advocacy to the roster of disciplines with the acceptance of Tia Nelis, self-advocate extraordinaire.  The group Self Advocates Becoming Empowered defines self-advocacy as “independent groups of people with disabilities working together for justice by helping each other take charge of [their] lives and fight discrimination.”  Self-advocacy is a movement that empowers people with disabilities to make decisions that enable them to be more independent.  Including a self-advocate seemed like a natural expansion for the LEND program, where students are offered diverse opportunities and experiences to further their leadership and advocacy skills.

JFK Partners, CU-DenverLEND Family Discipline Subgroup at JFK Partners Develops Training Video to Illustrate Different Ways of Giving Feedback After a Diagnostic Assessment

The LEND Family Discipline subgroup at JFK Partners, CU – Denver, developed a training video to illustrate different ways of giving feedback after a diagnostic assessment.  Three scenarios where psychologists gave an autism diagnosis and recommendations to a parent were represented and discussed.

Sixth Annual Midwest LEND Consortium, October 2010

LEND trainees and faculty/staff from South Dakota, Minnesota, Iowa, Missouri and Kansas, converged on Omaha and the Nebraska LEND program.  In attendance were 80 trainees and 27 faculty and staff members.  Trainee small groups engaged in a number of leadership discussions and interactions to get acquainted and to learn from each other. LEND faculty and staff met with Denise Sofka and Jamie Perry, and spent the afternoon sharing programmatic information around the topics of diversity, recruitment, and curriculum.

Literature and Medicine Addresses Cultural Competency at Nisonger Center

For a second year the LEND program at The Ohio State University’s Nisonger Center incorporated a series of seminars entitled “Literature and Medicine” facilitated by Georgina Dodge, PhD, the Assistant Vice Provost in the Office of Minority Affairs.  Literature and Medicine is a national award-winning reading and discussion program for health care professionals offered by Ohio Humanities Council.  The program “encourages participants to connect the worlds of science and lived experience, giving them the opportunity to reflect on their professional roles and relationships through plays, short stories, poetry, fiction an personal narratives in a setting where they can share their reflections with colleagues.”(Maine Humanities Council)

Trainees

Disability Policy Seminar Debrief – For Trainees by Trainees

Friday, March 11, 2011 3:00 PM – 4:00 PM EST.  This trainee-led webinar is for those trainees who attended and trainees who were unable to attend the 2011 Disability Policy Seminar.  The trainees presenting this webinar will recap this years DPS by sharing products, presenting their experiences meeting with representatives on Capitol Hill, and reviewing what they learned during the sessions and plenaries about policy/legislation. Register here

Joseph P. Kennedy Policy Fellowship

The Fellowship has been a tremendous opportunity for both parents and professionals to learn, experience and impact the policy development process in Washington DC.   This year’s applications are due March 15.

Trainees’ Experiences at the AUCD 2010 Conference

Many trainees from around the country come to Crystal City, Virginia to attend AUCD’s 2010 Conference Going to Scale: Making What Works Accessible To All. Some of the trainees documented their experience at the conference.

AUCD is searching for the 2011-2012 Virtual Trainee

This individual works remotely from his/her home Center/Program for one academic year to build and enhance a network among trainees at AUCD’s UCEDDs and LENDs. Candidates should be a trainee in the coming year, have previously acquired knowledge of their Center or Program, and be interested in learning about the entire network of centers as well as national issues related to persons with disabilities and special health care needs.

Awards and Honors

Dr. Judith HoltDr. Judith Holt has been recognized by her colleagues at Utah State University (URLEND) with the Strong Human Service Award

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Dr. Stephen SulkesStephen Sulkes is the recipient of the Golisano Foundation Leadership Award

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Katie Arnold was awarded the Young Nonprofit Professional of the Year award

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Events

Register for the webinar, “Preparing a Successful Manuscript” on Wednesday, March 9 from 2:30-3:30 EST

The MCH Training and Research Resource Center will be hosting a webinar Wednesday, March 9th from 2:30-3:30 EST entitled “Preparing a Successful Manuscript.”

The Society for Developmental and Behavioral Pediatrics Program Committee requests proposals for the Faculty and Fellow Development in Teaching DBP

The SDBP Program Committee requests proposals for the Faculty and Fellow Development in Teaching DBP: An Interactive Workshop and the Pre-Meeting Workshops for the upcoming 2011 Annual Meeting. The deadline for proposals is March 18, 2011.

32nd Duncan Seminar: ‘I’ve Got Something to Say!’ Communication Strategies for Young Children with Physical Disabilities

This one-day conference at the Seattle LEND will focus on children with neurodevelopmental disabilities and their families. Highlights include recommendations on shaping early communication, augmentative communication, adaptive seating to support communication, impact of drooling on communication and strategies to address it, and much more.

2011 Pacific Rim International Conference on Disabilities

April 18& 19, 2011.  Location: Honolulu, Hawaii.  The Pacific Rim International Conference (Pac Rim) on Disabilities has been widely recognized over the past 25 years as one of the most “diverse gatherings” in the world. The event encourages and respects voices from “diverse” perspective across numerous areas, including: voices from persons representing all disability areas; experiences of family members and supporters across all disability areas; responsiveness to diverse cultural and language differences; evidence of researchers and academics studying disability; stories of persons providing powerful lessons; examples of program providers, natural supports and allies of persons with disabilities and; action plans to meet human and social needs in a globalized world.

The 13th Annual Autism Summer Institute: Everybody Reads, Everybody Writes, Everybody Has Something to Say

August 8-10, 2011 at the Crowne Plaza Hotel, Nashua, NH.  Featuring: A strand specifically for adolescents and young adults who experience autism organized by the Autistic Self-Advocacy Network (ASAN);  Age-specific content; A hands-on technology exploration lab; Evening film screenings.

AUCD 2011 Conference and 40th Anniversary Celebration

November 6-9, 2011 at the Hyatt Regency Crystal City, Virginia

Resources

Autism Speaks Family Support Transition Tool Kit

The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood. Anyone can download the Transition Tool Kit for free!

CDC’s New Pediatric Genetics Website

Some of the new features of the site include: Easy-to-read information on genetic disorders, family health history, genetic counseling, and newborn screening, a compilation of important data and scientific publications, Individualized page for health professionals.

Report to Congress: Health-Related Research and Development Activities at USAID

USAID is the federal agency that enables the widespread use of game-changing interventions and breakthroughs to reduce poverty and improve livelihoods globally.  This link includes information on: Health Systems Strengthening; Newborn Health; Maternal and Child Health; HIV/AIDS

Maternal and Child Health Bureau: Life Course Approach

The life course approach to conceptualizing health care needs and services evolved from research documenting the important role early life events play in shaping an individual’s health trajectory.  The interplay of risk and protective factors, such as socioeconomic status, toxic environmental exposures, health behaviors, stress, and nutrition, influence health throughout one’s lifetime.

Interdisciplinary Technical Assistance Center on Autism and Developmental Disabilities - Resource Compendium

ITAC Resources are links and materials related to ASD and DD.  The categories are: Screening, Assessment & Diagnosis; Intervention & Treatment; Training and Professional Development; Health Care and Health Disparities; Policy and Advocacy; Family Focused Resources; Diversity and Cultural Competence; and Associations and Foundations.

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