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.
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.