Impact: What Does Health Have to Do with Transition? Everything!

Resources

Parent Training and Information Centers/Community Parent Resource Centers. Every state has at least one Parent Training and Information Center or Community Parent Resource Center serving families of children and young adults with all disabilities from birth to age 22. They help families access appropriate education and services for their children, train and inform parents on a variety of topics, resolve problems between families and schools or other agencies, and connect young people with disabilities to community resources addressing their needs. To find out about the parent center in your state visit www.taalliance.org/centers or contact the National Technical Assistance Center at PACER Center, Minneapolis, 888/248-0822 (toll-free), 952/838-0190 (TTY/711 Relay), or alliance@taalliance.org (e-mail).
Bright Futures for Families (http://brightfuturesforfamilies.org). Bright Futures for Families is a national initiative for families and communities to promote and improve the health and well-being of children of all ages. Resources on the Web site include the Family Pocket Guide – Raising Health Infants, Children and Adolescents; Health Care Visit Checklist for All Children Including Children with Special Health Care Needs; Transitions – Growing Up and Away; and the e-newsletter Bright Futures: Family Matters.
Family Voices (www.familyvoices.org, 505/872-4774 or 888/835-5669). Family Voices is a national grassroots network of families and friends that advocates for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent for all children and youth with special health care needs. It promotes the inclusion of all families as decision-makers at all levels of health care, and supports essential partnerships between families and professionals. On its Web site are resources for information and education concerning the health care of children with special health needs. In addition it provides information on the Family Voices organizations in each state.
Kids as Self Advocates (www.fvkasa.org). Kids as Self Advocates (KASA) is a national, grassroots network of youth with disabilities and special health care needs (and their friends) speaking out. KASA youth are leaders in their communities who spread helpful, positive information among their peers to increase knowledge around various issues including living with disabilities, health care transition issues, school, work, and many more. KASA is a project of the national organization Family Voices, and on the KASA Web site are useful resources for youth with disabilities and special health care needs, and a place to share ideas and experiences.
The Self-Advocate Leadership Network (www.hsri.org/leaders, 503/924-3783). The network educates self-advocates to play lead roles in their personal lives and to shape disability policy. Several products are available on self-advocacy, self-determination, giving a presentation, and organizing for change. Also, the network publishes The Riot! a free quarterly e-newsletter for self-advocates (www.theriotrocks.org). Not a typical policy rag, it tackles important issues and covers life topics, such as dating, health and everyday fun. The network is based at the Human Services Research Institute, Portland, Oregon.
Family Village (www.familyvillage.wisc.edu). Family Village is a Web site for children and adults with disabilities, their families, and others. It brings together thousands of online resources in a organized, easy-to-use directory, including an extensive listing of transition-related resources for teens, young adults, and their families. Family Village is operated by the Waisman Center, University of Wisconsin - Madison.
The National Youth Leadership Network (www.nyln.org, 866/480-6565 x2, toll-free for youth only). This network is dedicated to advancing the next generation of disability leaders by promoting leadership development, education, employment, independent living, and health and wellness among young leaders representing the diversity of race, ethnicity and disability in the U.S. It fosters the inclusion of young leaders with disabilities into all aspects of society at national, state, and local levels, and communicates about issues important to youth with disabilities. Its Web site has resources on a wide range of topics including scholarships and financial aid for students with disabilities.
Partners in Policymaking (http://www.partnersinpolicymaking.com). Partners is an innovative, competency based leadership training program for adults with disabilities and parents of young children with developmental disabilities across the country. Created by the Minnesota Governor’s Council on Developmental Disabilities, it offers numerous online and classroom training opportunities, including the following free online courses: Partners in Education, a six-hour self-directed course to help parents of children with developmental disabilities better understand and maximize the benefits of special education services and inclusion for their children; Partners in Employment, a six-hour self-directed course for adults with developmental disabilities on how to find a job, write a resume, participate in an interview, and plan for a career; and Partners in Time, an eight-hour self-directed course to help people with developmental disabilities, their family members, and others understand the history of society’s treatment of people with disabilities.

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Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/192/default.html). Citation: Gaylord, V., Agosta, J., Barclay, J., Melda, K. & Stenhjem, P. (Eds.). (2006). Impact: Feature Issue on Parenting Teens and Young Adults with Disabilities 19(2). [Minneapolis: University of Minnesota, Institute on Community Integration.]
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