Couto, R. (2000). Community health as social justice: Lessons in leadership. Community Health 23,1-17. Goldstein, A.O, Calleson, D.

, Bearman, R., Steiner, B.D., Frasier, P.Y., & Slatt, L. (2009). Academic Medicine, 84(6), 754-764.

Lessons in Leadership: Experiences of Virginia LEND Graduates

Carmen Alverio, Ph.D., M.S., CCC/SLP, Jessica Cann, M.S.W., Anita Dommert, M.Ed., Jessica Jagger, Ph.D., Janet Willis, M.P.H., R.D.
Project: Guide to Virginia Medicaid Waivers for Persons with Disabilities, Their Parents, and Caregivers By Jessica Cann, M.S.W.
Objective: To create a guide that is easy-to-read to assist families and providers navigate the Medicaid waiver system in Virginia. Project Development: A guide was developed in collaboration with our family discipline faculty member who knew the challenges of figuring out where to turn to get the appropriate waiver for a child with special needs and how to get that waiver. For the guide, we wanted to include widely known information about Virginia Medicaid Waivers, along with information that is more difficult to find. This included the background of waivers, realities, and good news about the waivers, an overview of each waiver, and a list of resources. The project took a lot of research and there were many drafts before the final product was ready for distribution. The guide is widely used to this day in the state of Virginia. When one searches for Virginia Medicaid Waivers, this guide is the first thing listed, and many colleagues continue to use it as a resource. Leadership Lessons: There was a huge need for an easy to read guide! My co-workers inside the agency and those that I have come to know in the community continue to look to me for information on Medicaid waivers and help navigating the system

Introduction: Virginia LEND Leadership Projects

One of the goals of the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs is the provision of interdisciplinary leadership training. LEND programs across the country have developed curricula that address leadership development. A requirement of the Virginia LEND curriculum is a leadership project that trainees/fellows complete toward the end of their training. The purpose of this assignment is to demonstrate leadership through the implementation of a project related to advocacy, health care policy, program development, research, training and/or an unmet community need for children with neurodevelopmental and related disabilities. Each trainee/fellow develops a project as an independent study in consultation with their faculty advisor. The projects are implemented, evaluated, and presented to the faculty and trainees prior to graduation from the program. Leadership projects include outreach education programs, grant applications, initiation of research projects, legislative initiatives, and advocacy efforts. This poster provides examples of projects and the lessons learned as described by four Virginia LEND graduates.

Project : Are You Ready? Disaster Preparedness for Families of Children with Disabilities By Jessica Jagger, Ph.D., M.S.W.
Objective: To develop a guide for families of children with disabilities or special health care needs following the three steps of preparedness from the Department of Homeland Securitys Ready America campaign Get a Kit, Make a Plan, Be Informed. Project Development: This guide synthesizes a number of resources from federal, state, and community leaders in emergency preparedness and in disability. There are also direct links to helpful tools so that online users of the guide can click to link to the Family Emergency Plan from Ready America that you can fill out online and print, for example. In the guide, families can take it one step at a time to Get a Kit, Make a Plan, and Be Informed, considering throughout the process the unique needs of their child or children with disabilities such as equipment, medication, comfort items, and other supports and resources. The development of this guide was informed by ongoing discussions with families, literature review, and more than three years of experience working with the disability community and the emergency management community to increase awareness and preparedness. The guide was designed to be concise and manageable for busy families and accessible through the internet. Leadership Lessons: This project allowed me to put more than three years of advocacy and research on the topic of emergency preparedness into a practical application. I was able to discuss the topic with families to ensure that it was a useful tool for them. It was a valuable learning opportunity for me because it allowed me to translate research to practice and explore the issues and challenges of emergency preparedness through the eyes of families of children with disabilities.

Project: Arc South of the James by Anita Dommert, M.Ed.

Objective: To effectively launch and sustain a new local chapter of the Arc, a nonprofit organization for families of individuals with intellectual/developmental disabilities. The primary focus of the chapter is advocacy and dissemination of information and resources to families. Project Development: 1) Recruited a Board of Directors and elected officers including self advocates. 2) Established 501 c 3 status as a nonprofit entity. 3) Became active members of the community by joining the Chamber of Commerce. 4) Organized a Chapter day with the Arc of Virginia to advocate for funding of community-based services at the Virginia General Assembly. 5) Established individual, family, and business memberships through informational membership meetings. 6) Participated in public speaking engagements, including budget hearings and the Arc State Convention. 7) Organized training sessions on topics such as effective advocacy, special needs trusts, and waivers. 8) Developed a brochure, website, P.O. Box and e-mail addresses to facilitate communication with families. Leadership Lessons: I learned that my leadership style is leading by serving. I did not really see myself as a leader when I began the LEND program. I have established a goal to improve my public speaking skills, which has been a challenge and continues to stretch me beyond what I ever thought I would be able to do. I have learned how to delegate responsibilities to others based on their strengths/interests and let them develop as leaders. This project also pushes me to keep striving to learn more about public policy affecting families with individuals with disabilities and to educate families with workshops on relevant topics.

Project: Reading Workshop for Hispanic Parents By Carmen S. Alverio, Ph.D., M.S., CCC/SLP
Objective: To teach Hispanic parents how to support early language development through reading. Project Development: A series of five workshops were developed and delivered to six Hispanic parents of young children with developmental disabilities or speech/language delays. Each parent received two books, and a tool kit with activities related to the books. Reading and related crafts and activities were discussed, demonstrated, and practiced in the workshops. The parents practiced reading with their children and learned creative ways to promote early language skills. A pre and post evaluation revealed many positive outcomes, including an increase in frequency and duration of reading with their children, as well as a recognition of the importance of reading for language development. Leadership Lessons: A good leader assists others to become leaders. While training the parents how to read to their children and how to elicit language through reading, it was very gratifying to witness how these parents became teachers of their children. Learning new strategies and realizing the importance of reading, empowered them to be active participants in their children's education. These parents became leaders who with their new learned literacy skills would impact their children cognitively and emotionally.

References
Couto, R. (2000). Community health as social justice: Lessons on leadership. Community Health, 23, 1-17. Goldstein, A.O., Calleson, D., Bearman, R., Steiner, D.B., Frasier, P.Y., & Slatt, L. (2009). Teaching advanced leadership skills in community service (ALSCS) to medical students. Academic Medicine, 84 (6), 754-764.