Welcome! Virginia Leadership Education in Neurodevelopmental Disabilities (Va-LEND) is an interdisciplinary leadership training program at Virginia Commonwealth University. We are a project of the Partnership for People with Disabilities. Our program is funded through a grant (# T73MC00040) from the Maternal and Child Health Bureau, Health Resources and Services Administration. The grant supports an interdisciplinary training program to prepare health professionals and related disciplines in the field of childhood disabilities for leadership and advocacy roles. In addition we provide continuing education and community training and consultation/technical assistance. We encourage you to explore our website to learn more about our program.
For updates about our activities follow our postings below.
Posted in LEND
Becky King (Social Work Trainee) developed and implemented several presentations and a webinar on Virginia’s Medicaid Waiver Redesign Initiative. These presentations and webinar were for families, self-advocates, and providers. Presentations were made to the Arc of Roanoke, the Arc of Augusta, and the Arc of Southside. The objectives of the presentations included increasing awareness of system change initiatives in the I/DD service system among families, self-advocates and providers, and educating families on national movement of more inclusive services and policies driving change.
For her Leadership Project, Laura Bell (Occupational Therapy Trainee) initiated the development of objective measures for Occupational Therapists seeking to work in the VCU Neonatal Intensive Care Unit (NICU). The objectives included determining appropriate resources to assist in the development of NICU competencies, researching the role and skills Occupational Therapists bring to the NICU setting, finding appropriate steps individuals can take in order to obtain necessary knowledge and skills, and finally developing a detailed set of competencies. This is the beginning of an ongoing process.
For her Leadership Project, Lindsay Bailey (Genetic Counseling Trainee), explored how to talk about hereditary cancer at the end of life. The aims of her study were (1.) to identify potentially effective and appropriate methods of delivery of cancer genetic information to family members of patients with terminal cancer, and (2.) to assess the impact that the exploration of hereditary risk of cancer has on the family members of the dying patients. Communication with a health care professional, communication between family members, and methods of communication were explored. Emotional responses of participants were assessed. The study found that the best method of delivery of hereditary cancer information needs to be explored further because the preferred method was often situational and varied based on each person. Also, it is important to be cognizant of the wide range of emotions that a family member of a palliative care patient with terminal cancer experiences and adapt communication appropriately.
Melissa Beyer (Genetic Counseling Trainee) did her Leadership Project about Huntington’s Disease (HD). Huntington’s Disease is a rare, progressive, neurological disorder characterized by changes in movement, cognition, and psychological disturbances. Typically, individuals with HD begin to show symptoms in their thirties or forties. There is no cure for HD. Melissa presented her findings and developed a handout to educate healthcare providers about HD, specify who should care for individuals with HD, and identify unique challenges that young people at risk of a developmental disability face.
A proposed book study of Out of My Mind by Sharon M. Draper was designed as a reading curriculum and catalyst for student disability awareness and learning. Meredith Heiner (Audiology trainee) performed a pilot study on a 5th grade class in Chesterfield. The students were asked to participate in a pre-test (prior to reading the book) and a post-test (after finishing the book) regarding perceptions and attitudes towards children with disabilities. The goal of this book study is to increase students awareness of disabilities, influence attitudes towards disabilities, and foster inclusion of children with disabilities in the school settings.
Alicia Kohn and Sarah Beth Slabach (Physical Therapy trainees) organized and designed a workshop for siblings of children with special healthcare needs in partnership with the Children’s Museum of Richmond. The workshop was created to provide an outlet for siblings to discuss personal experiences and interact with children who have similar experiences. The trainees developed a guide so that these workshops may be replicated in the future.
In recent weeks two Va-LEND trainees have presented their leadership projects. These are innovative projects related to the field of disabilities that the trainees have developed with the guidance from their faculty advisers. Below are highlights of these projects.
Cary Upshaw, Special Education Trainee, designed a Powerpoint presentation to educate Head Start staff on the benefits of preschool inclusion, as well as provide support, encouragement, teaching aids and resources to the Head Start staff.
Lindsay Dawson, Physical Therapy Trainee, established a partnership between REACHcycles and VCU Physical Therapy students. REACHcycles is a non-profit organization with a goal to create mobility and independence for children and veterans with disabilities in the greater Richmond area. Physical therapy students were able to volunteer at assembly and delivery events in which adaptive tricycles were assembled and fitted to each child. (REACHcycles is a local chapter of a national non-profit AMBUCS.)
Va-LEND Trainee, Zipporah Levi-Shackleford received a scholarship to attend the AUCD conference last month in Washington DC. Recipients in turn were to write an essay about their experience at the conference. Zipporah took it a step further and created this video.
Catherine Marchetti, a current Va-LEND Trainee was named Richmond Teacher of the Year! We are proud of her accomplishments! Read more about her here.
In recent weeks we have heard exciting news from four of our Va-LEND graduates. We are proud of the accomplishments of all of our graduates and pleased to share this news.
Shannon Haworth has recently accepted a job at the Association of University Centers on Disabilities (AUCD) in Silver Spring, MD. She is the new senior specialist for the LEND team. Prior to this job, she worked for the Partnership for People with Disabilities as the Project Manager for the Virginia state autism implementation grant, and served as the Clinic Coordinator in the Va-LEND interdisciplinary clinics. She continues to co-teach the Interdisciplinary Teamwork course in the Va-LEND curriculum with another Va-LEND graduate, Carole Ivey, PhD, OTR.
Maria Isabel Frangenberg
Maria Isabel Frangenberg has recently accepted a position with AUCD, as well. She will be working with AUCD’s Disability and Inclusion Fellowship program which is a new initiative to increase diversity, ensure cultural and linguistic competence throughout the network of university centers on developmental disabilities (UCEDDs), and cultivate partnerships at the national level to address issues of disability and inclusion. Prior to moving to Maryland a year ago, Maria Isabel also worked at the Partnership for People with Disabilities as the Latino Community Liaison in the Family 2 Family Center. In addition she preceded Shannon Haworth as the Va-LEND Clinic Coordinator and co-taught the Interdisciplinary Teamwork course in the Va-LEND curriculum with Carole Ivey, PhD, OTR.
On October 19, 2014, the Greater Richmond ARC, serving people with developmental disabilities of all ages, presented Vicki Beatty with its Ladybug Award at the annual ARC Ladybug Wine Dinner fundraiser.The Ladybug Award recognizes an individual who has demonstrated meritorious service to young children with disabilities and their families in greater Richmond. Vicki is the founder and head of Virginia Parent Advocates LLC which provides advocacy for children enrolled in special education services, and offers workshops and life plans. She is a well-respected parent advocate in our community.
Read more: http://www.lite98.com/onair/kats-online-cafe-1178/childrens-advocate-vicki-beatty-receives-greater-12893848#ixzz3HRtIf3qQ
On November 11, 2014 Jess Jagger will receive the 2014 AUCD Young Professional Award at the AUCD national conference in Washington, D.C. This award is presented to professionals in the disability field under the age of 40 years who have demonstrated dedication and commitment to people with developmental disabilities and their families through their work as a bridge between the academic sector and the community. Currently Jess is the Data Surveillance Section Head, Behavioral Health Integration for the US Marine Corps, Headquarters Marine and Family Programs. Throughout her career she has demonstrated leadership in the field of disabilities through her scholarly achievements, research and work on policy issues.
The 4th Annual Building Bridges Conferences was held October 16, 2014 at St. James Episcopal Church in Richmond, Virginia. The focus of this annual conference is to build culturally sensitive collaborations among people and agencies across the Commonwealth and beyond.
The topic of this year’s conference focused on Intellectual and Developmental Disabilities in racially and ethnically diverse communities. The room was filled to capacity to hear the Keynote Speaker, Dr. Rooshey Hasnain, Ed.D, visiting clinical assistant professor and researcher with the Department of Disability and Human Development and the Asian American Studies Program at the University of Illinois at Chicago. She discussed the lives, challenges and strengths of people with disabilities and mental illness. In particular, refugees and immigrants who face additional barriers to intervention and treatment.
In addition to her work at the University of Chicago and in local communities, Dr. Hasnain has worked in three different University Centers of Excellence in Developmental Disabilities (UCEDD) where she initiated new research and service delivery models with local and global partners.
Other notable speakers included Dana Yarbrough, community supports specialist at the Partnership for People with Disabilities (PPD); Cecily Rodriguez, Director of the Office of Cultural and Linguistic Competence at the Virginia Department of Behavioral Health Services; Allyson Coleman, who manages Organization Development and Training for the City of Alexandria, Department of Community and Human Services; Yvonne Russell, Henrico Area Mental Health and Developmental Services; Katherine Lawson, Virginia Board for People with Disabilities and Mauretta Copeland, PPD and Virginia LEND Family Specialist.
Pictured above (left to right): Tracy White, LEND Training Director, Rooshey Hasnain, keynote speaker and Jessica Ward, PT, DPT, a VA LEND Trainee.
During September and October, faculty and trainees participated in the Va-LEND Book Adventure. This is an annual activity to foster engagement and develop a sense of community with selected books that address LEND topics and themes related to disabilities, life course, family centered care, inclusion, etc. This year the books selected were Carly’s Voice (2012) By Arthur Fleischmann & Carly Fleischmann and Wonder (2012)by R.J. Palacio.
Faculty and trainees selected a book(s) to read and signed up for discussion groups at the beginning of the semester. Discussion topics were developed and shared on Blackboard. Each discussion group had a faculty facilitator. The feedback has been overwhelmingly positive.
We are excited to welcome our new class of Va-LEND trainees. We have enrolled fourteen trainees from from ten different disciplines: occupational therapy, genetic counseling, special education (2), family, psychiatry, physical therapy, speech pathology, social work (2), psychology, and nursing. Furthermore, we have four advanced medium term trainees, including three occupational therapists and one physical therapist. Welcome to the program!
In recent weeks four Va-LEND trainees have presented their leadership projects. These are innovative projects related to the field of disabilities that the trainees have developed with the guidance from their faculty advisers. Below are highlights of these projects.
- Kayla Claxton, genetic counseling trainee, conducted a research study to gather information from parents and other experts that work with children with Down Syndrome (DS). The goals of the study were to gather information about: (1) life with a child with DS; (2) resources and supports that are currently being utilized by parents of children with DS; and (3) additional supports that are perceived as potentially beneficial to these families. The data collected will be used to produce a current educational video on Down Syndrome. Kayla presented the results to the Down Syndrome Association of Greater Richmond. The abstract of Kayla’s study can be found under Resources.
- Jill Harris, genetic counseling trainee, researched and developed a brief clinical guide to gender differences. The purpose of this guide was to use primary literature to outline gender differences and also identify additional factors of the family, child, and diagnosis that may assist clinicians in providing the best support and resources for families. Most of the broad gender differences addressed topics related to coping behaviors. This guide is available under Resources.
- Rebecca Craft, physical therapy trainee, organized and evaluated a self-advocacy panel of four adults with disabilities who spoke to health science students, faculty, and professionals. The objectives for this project were (1) to influence the way people perceive others with disabilities, and (2) to educate healthcare students and professionals on advocacy roles for people with disabilities. The event was videotaped and a DVD was created and shared with healthcare professionals working with children with disabilities in a pediatric therapy setting.
- Samantha Arritt, physical therapy trainee, ran a book drive and collected 328 children’s books that were then donated to Hayes E Willis Health Center and Richmond ARC. Monetary donations were used to purchase books in Spanish, as well as to give a gift card to the VCU Neonatal Intensive Care Unit. Samantha also set up an interactive story time session for the children and families who attended a Friday afternoon clinic at Hayes E Willis to inspire the children to read their new books. In addition to the interactive reading session, Samantha put together a parent handout on ways to make reading more interactive to be shared with families in the clinic.