Virginia Leadership Education in Neurodevelopmental Disabilities

For many years I contemplated as my son got older, would I transition him to homeschooling or enroll him in a private school. I monitored the school system and noticed how things for children with disabilities sometimes the appearance of the school helping was actually not providing that much help at all. Over the last two years traditional school became more and more difficult for my son, all classes shifted to a total virtual atmosphere this method offered very little accommodations that assisted him in his journey of learning. This school year my son was scheduled to start a new school in a new county. Upon two family visits to the school to further assist my son with becoming familiar with the teachers and the building but each time my son became more agitated and would run away. At the last visit, I knew what decision had to made in order for my husband and I to keep him safe and create an atmosphere that made learning enjoyable. At that time, this sparked me to do my leadership project and create a Homeschooling Special Needs brochure. My goal is to help someone that is just getting started and have something one could look back at as a refresher just in case they need a memory jogger. As I started my journey of preparing to homeschool my 13-year-old son, the information I gathered from my process was also used to development the brochure. To do my best in learning how to go about homeschooling and where to start, over the summer I attending trainings sessions with the Special Needs Network and the Home Educators Association of Virginia (HEAV). I also joined several homeschool Facebook support groups in which I was able to ask lots of questions and post a survey titled “Homeschooling -What I Wish I Knew Before I Got Started”. From the survey, I held two community zoom sessions in which I was able to gather feedback from the community and I reached out to the county superintendent office. Overall, my goal and prayer are that the brochure will inspire all families with children with disabilities no matter the school age between 0-21 years old that yes they can homeschool no matter the disability or the family dynamic. Understand that every day will not be perfect with homeschooling, just take it one day at a time. As a parent of a special needs child, I understand parents want the same thing and have the same mindset that every child deserves the best learning school experience to become the best they can be.

I chose this project, because going through LEND during the pandemic, at a time when social inequality and health disparities were further being brought to light, I spent time listening to everyone’s stories at LEND, the National Down Syndrome Congress town halls, etc. I found I was further adjusting my lens. I was currently serving as a board member for the Down syndrome association of greater Richmond (DSAGR) and had just taken on the role of committee chair for the newly formed diversity/community growth committee to meet one of our identified strategic goals to improve our outreach into the community. As my lens continued adjusting, I began to see an opportunity to do better. Our committee has been working to help our exclusive organization based on the diagnosis of Down syndrome take on diversity equity and inclusion (DEI) to be fully person-centered, looking at all pieces to improve accessible to further meet the diverse needs of our families. My hope is that our work setting up DEI priorities, such as reviewing our cultural competence, partnering with the Virginia Center for Inclusive communities to review our policies, diversifying our board matrix, setting up google translate for our communications, using DEI criteria for finding our new Executive Director, expanding our first call outreach, etc. will impact children and families with disabilities by making our organizations programming more accessible and available to ALL families in the community. My hope is that we will continue improve our programs and offerings, through this ongoing process of reflection, by regularly adjusting our lens.

My name is Nicole Johnson. I am a family discipline trainee. The title of my project is the creation of "a hands-on resource site for the Yorktown school district." I am in the process of creating a Microsoft Sharepoint Site to share hands-on activities with parents and students who are looking for an alternative learning approach to virtual learning. I chose this project to share best practices with families who are also looking for a balance between screen time and hands-on activities. This project is tailored to support students with and without disabilities.

My name is Mariah Clark, I am a second year genetic counseling student and a Virginia LEND trainee. My LEND leadership project is titled “Coordination of the 22q at the Zoo Worldwide Awareness Day in Richmond, Virginia.” My leadership project is coordinating an opportunity for families to convene at the Metro Richmond Zoo to meet with each other and raise awareness of children impacted by 22q. I was interested in coordinating this event to create more awareness for families and individuals with 22q living in and around Richmond. Our goal is to increase awareness and engagement through this event, and we are hopeful that we will have an amazing turnout.

My name is Jenny Clark, and I am a physical therapist completing the VCU pediatric residency program. Based on my experiences in a variety of PT settings this year, my Va-LEND Leadership project is titled Cortical Vision Impairment – Information and Resources for Early-Intervention and School Based Therapists. I chose this project after recognizing that CVI is a common diagnosis seen by Early Intervention and School-Based therapists that many of us are not well-equipped to address through our therapies. I hope that this collection and sharing of information and resources will help children and their families achieve improved interdisciplinary functional outcomes with the help of their better-informed therapists.

This project is close to my heart for profound reasons. I was raised by my father and mother who were from different cultures. Looking back on my childhood, I see how their cultures impacted the care I received as a child with a developmental disability. I am dedicated to helping families, students, and professionals learn how to incorporate a family's culture in person-centered care for children with intellectual and developmental disabilities (IDD). As a part of the educational experience, I believe it is critical for all students to learn from those with lived experience. This guide was created to help you start thinking about culture in the delivery of person-centered care. I encourage you to always take time for self-reflection and continue learning from people with disabilities and their families!

Our names are Elisheva Marks and Faith Pinckney, we are in the Disability Trainee track as representatives of the family advocacy discipline, and our Leadership Project is titled “Gynecological Education for Women with ID and DD”. For our leadership project, we began to develop a booklet that provides a narrative of a young woman, Hope, as she encounters her first OB-GYN appointment. We chose this leadership project after recognizing the significant lack of equitable reproductive health care for women with disabilities. We were inspired by two young women with disabilities in our own lives. The lead characters in the narrative were named after Faith’s sister and Elisheva’s daughter. As we began to conduct research for our leadership project, it became even more apparent the necessity of such resources for young women with disabilities. It is our hope that, through our leadership project, we will inspire change and initiate crucial conversations to correct Richmond’s absence of specialized OB-GYN clinics for women with disabilities

Resource: https://drive.google.com/file/d/1Mmpe892I4MGBR7cvf37IRt6hXeMQ_BO-/view?usp=sharing

Our presentation covers the history of persons with disabilities in the arts. The direction of our research mainly focused on the theater, and Broadway, in particular. One article included how some theaters have performers with intellectual and developmental disabilities. Also, the same theaters have made their theaters accessible to people with physical disabilities. Our minimal research suggests that persons with disabilities are changing the face of art, and the performing arts specifically

My name is Marna Kalman. I am a self-advocate discipline trainee. My leadership project title is Co-training Police As A Person With Disabilities: Policing Perspectives When Interacting With The Special Needs Community. I interviewed officers and worked with Pam Mines to modify the police training she does as a co-presenter. My contributions include sharing a little bit about me, my disabilities, and scenarios for police trainees to consider. I chose this project because it is important to me that interactions between police and people with disabilities are safe and just. I hope that this project improves interactions between law enforcement and people with disabilities.

The Cerebral Podcast talks about disability awareness devices using literary devices, like oxymorons,etc. In September, I talked about situational awareness focusing on martial.arts. In October, it transitioned to employment awareness and disabled god theory. In November, I talked about maternal health and Thanksgiving. In December, I talked about disability representations in novels, including A Christmas Carol. Then, I end by talking about rehabilitation in January and enriched environments. I also talk about some of my arcs and realizations. Link to podcast: https://thecerebralpodcast.podbean.com/.

My name is Jennifer Brashears and I am a pediatric physical therapist currently completing a residency program through VCU. The title of my leadership project is, “Providing Opportunities for Children with Disabilities through Equipment Re-use; It’s the CATS Meow!” CATS (Children’s Assistive Technology Service) is a local equipment closet that takes donated pediatric equipment (such as wheelchairs, standers, walkers, bath chairs, etc), cleans and refurbishes it, then gives it to the children and families that need it at no cost. This organization relies heavily on the work of volunteers. My project created a paper directory of all the different pieces of equipment that could be donated and the information related to each piece, so that when the equipment is listed on the inventory website the information is accurate even if someone who is unfamiliar with the equipment is filling out the paperwork. This will allow the best and most-precise description of the equipment possible so that therapists and families know if that piece is right for them. It will also cut down on the time it takes to search for this information each time a new piece of equipment comes into the office. My hope is that this project will lessen the workload of the volunteers that run this amazing program as well as help children and families with disabilities pick the best and most appropriate piece of equipment for them to live their lives to the fullest.

THISability Matters! is a multifaceted program designed to empower students with disabilities K-5 in developing self advocacy and agency through teaching their peers about their specific disability. The program is leveled, meaning opportunities and activities available will take age, ability, and interest into consideration. Although adults serve as support and guidance sources, the program is student-centric, with students having an influential voice in what they do and how. It is my hope that such a resource will contribute to increasing equity for students with disabilities, as well as decrease inaccuracies, misconceptions, and misinformation regarding what ability is. By providing students with disabilities the support and tools they need to accomplish this, while at the elementary education level, I also hope this will impact students in their perspective on disability, starting as children to their adulthood.

For my leadership project I chose to create a document that highlighted some of the more prominent transition resources available. After working in private schools for more than five years, I have noticed a lack of individual involvement and implementation of transition planning. I can count on one hand the number of students and community personnel that participated in the transition planning. As a teacher, the one resource that we wish we had more of was time so I’ve created this document to aid in the ease of finding the information and possible resources to help with the process. It is my hope that this document will spark some initiative in teachers in order to allow all students the opportunity to have and create an appropriate transition plan.

Transition Resources for Educators

My project's objective is to develop easily accessible training and reference materials to help users with Developmental Disabilities (DD) better understand and access the Internet, and increase their participation in video-communications at a critical time of pandemic-driven seclusion; and, in support of the five Northern Virginia counties of Fauquier, Culpeper, Rappahannock, Orange, and Madison that form RRCS (Rappahannock Rapidan Community Services)’s catchment area, make a broad assessment of the virtual access tools and programs used by people with DD in that region to spearhead dialogue on needs and gaps. The impact that I hope for is: To help ANYONE who has problems understanding and accessing the online world: children with disabilities, but also adults with disabilities, seniors and beginners.

I developed a set of general guidelines for those who have coworkers or classmates on the autism spectrum (target audience: middle school and up). I wrote it in plain language (approximately 7th grade reading level) in order to be easily read and understood by as large an audience as possible. I chose this as there is much simple advice I wish was commonly known. Almost all of the difficulties I (as an autistic person) have had in a classroom setting or in the workplace have been largely due to a lack of awareness, knowledge, and consideration for those on the spectrum. I know and have known a large number of people on the spectrum unable (or unwilling) to complete their education or to continue employment due to issues that reasonable and relatively small changes could have resolved. Any improvements in the environment/culture in which those with autism interact are improvements I welcome. Attached is a pdf format which could be easily distributed via email by an organization (or easily printed and shared). I have also attached the final revised Word version. Upon approval from my chain of command, the pdf format will be distributed to my department (and hopefully division) at Virginia Commonwealth University (Office of Environmental Health and Safety; Safety and Risk Management Department; Division of Administration).

Working with people on the autism spectrum