Rehabilitation, Research and Training Center
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Rehabilitation, Research and Training Center |
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This is a publication of the Consortium for Children and Youth with Disabilities and Special Health Care Needs funded by the National Institute on Disability and Rehabilitation Research of the U.S. Department of Education under grant number H133B001200. The opinions contained in this publication are those of the grantee and do not necessarily reflect those of the U.S. Department of Education |
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Promising Practices in TransitionLead Investigator The purpose of this study is to identify promising practices in transition from pediatric to adult medical services for individuals with disabilities and special health care needs. Specifically, the study will:
The study employs three approaches to accomplish these goals:
Towards these objectives, the researchers will convene multiple focus groups of youth, and young adults with disabilities and special health care needs and separate groups of family members and providers. Based on the results of these focus groups, a Use and Utility Survey of Transition Practices will be developed to collect information about the transition experience from a wide range of consumers and health care providers. The study will ultimately provide a framework for describing, providing, and assessing transition services and articulating factors in the health care marketplace that impact availability of and access to transition services. In addition to the research focus this project also supports a listserv dedicated to the topic of health care transitions, an annotated bibliography of transition materials, and the Health Care Transitions Web site. (see below)
The Health Care Transitions Web site offers a number of ways to share and provide HCT information. Currently the site hosts the transition listserv as well as an annotated bibliography of HCT related materials and information. Under construction are a listing of HCT programs and services, a story area for personal accounts of HCT experiences, a legislation, regulations and policy reference area and announcements of upcoming events. A unique and innovative feature of this Web site is the Member Profiles Database. The Member Profiles are quick and easy ways to identify interests, experiences and areas of expertise in health care transition and share this information with others. Knowing others who have had similar experiences or have faced similar questions often creates a very strong bond. The Member Profiles Database supports communication between transition listserv members by providing a way to share this information. Most of the information requested is optional. However, it is our hope that members will complete the entire information form. Information in the database will only be available to members of the listserv. Member profiles serve as the foundation for the member search function, which is another powerful component of this Health Care Transitions site. Members can search other member profiles using a variety of search categories such as age, location or disability experience. Searches can help members to identify other listserv members who have interests or experiences similar to their own and facilitate encounters between members with experiences that can prove of great benefit to one another. The transition listserv currently has over 1100 members. To join the transition listserv, send a blank e-mail message (with no subject or body) to: Join-transition@list.ichp.edu Georgetown University Liaison: Leslie Walker, M.D. Research Team Lead Investigator: Team Members: Consortium Partners [ Family Voices ] |
