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| HRTW-AZ Racing
to the Future WEBSITE: swifamilies.org [Project Overview] [Contacts] [Abstract] CONTACTS: Tanis Bryan, Ph.D., Program Director, Healthy and Ready to Work: Racing to the Future, President, Southwest Institute for Families and Children with Special Needs (SWI), Research Professor, Arizona State University, Phoenix, Arizona t.bryan@swifamilies.org or TanisHBr@aol.com Tanis is professor emeritus from the University of Illinois at Chicago, and Research Professor at Arizona State University. She is President of the SWI, a not-f-profit corporation established with Karen Burstein to advance the well-being of families, children and youth with special needs through research, training, evaluation and dissemination projects. She has dedicated her professional life to advancing our understanding of the social and personal costs of having a disability through research and intervention programs. As co-director of the Arizona HRTW project, Racing to the Future, she works directly with youth, families and professionals to develop a network of adult and pediatric health providers to transition youth. Youth and families are involved in Participatory Action Research to promote the transition to adult care providers, continuing education and employment, and independent living. EXPERTISE: Research design, participatory action research with family and youth, social competence and social skills interventions, the intersect between health and education Karen Burstein, Ph.D., Co-Director, Healthy & Ready
to Work: Racing to the Future, Phoenix, AZ Karen Burstein has spent her adult life in the Arizona desert. She received her professional education at Arizona State University, where she now works as a Research Professor in Special Education. Since 1975, Karen has worked with children with special needs and their families. She has been a nurse, special education teacher, health care administrator and researcher. Currently, Karen is Project Director of the MCHB Statewide Medical Home Initiative in Arizona, the MCHB Integrated Services initiative Building Community Health Across Arizona and Co-Project Director of Racing to the Future: Healthy and Ready to Work. As co-director of the Arizona HRTW project, coordinates the Network of Community-based professionals who provide comprehensive medical care to young adults with special health care needs. Karen was also the parent of a child with significant special health care needs. EXPERTISE: Research Design, program evaluation, quantitative statistical analysis, special education of children/youth with special health care needs, collaboration between home and school, community development
ADDITIONAL STAFF:
ABSTRACT MATERNAL AND CHILD HEALTH IMPROVEMENT PROJECTS
Problem. Although legislation is in place, YSHN are less likely than non-disabled peers to graduate from high school, attend college, work in competitive employment or live independently. Many middle-aged adults who grew up with chronic health conditions are still treated by pediatricians; many seek health services only in emergencies. Adult health issues, e.g., reproductive health, adult onset diabetes, cancer, are being neglected. At the same time, however, adult providers do not feel adequately prepared to provide YSHN services, and are concerned about the time and resources necessary to provide require services. Goals and Objectives. The proposed project meets the highest priority of the MCHB to integrate personal health care and public and private health services to establish a replicable and sustainable community system of comprehensive service which is family-centered, culturally competent and integrated with education, social services, mental health and family support programs. The model meets the HP 2010 objective that all YSHN receive the services necessary to make appropriate transitions to all aspects of adult life. 1) Build capacity of adult health care provider system to receive transitioning YSHN by a) Establishing a collaborative network of pediatric and adult health care providers in the Phoenix metropolitan area, b) Training adult providers on issues related to transition , c) Increasing interagency linkages to improve access to services. 2) Build YSHN capacity for self-determination using Participatory Action Research (PAR) for identification of strategies for long-term health and disability management, vocational and educational choices, and peer and family supports. When feasible, YSHN use technology (e.g., video, Web, PDAs, wireless communication) as a means of a) monitoring their health, b) communicating with providers and peers, and c) participating in PAR. 3 ) Build family capacity to address their concerns regarding YSHN transition and increasing independence by having groups of parents identify problem solutions through PAR. Methodology. A network of 20 providers, including community
based pediatricians, Title V 1) YSHN being transitioned from Phoenix Pediatrics and Title V CRS clinics into adult care acquire the self-determination skills necessary for healthy physical and mental life styles through engagement on teams using PAR to identify solutions to problems, participation in their medical exams and identification of community resources needed for setting and achieving goals. YSHN use the HIP-YIP, a comprehensive durable medical record that includes past and present health status, PAR data, and transition plans. Further, when feasible, YSHN acquire skills in using personal data assistants (PDAs) and electronic transmission of data for record keeping and communication with providers, peers, and the Internet. 2) The YSHN’s families also do PAR to identify solutions related to their concerns about YSHN assuming personal responsibility for health care and making the transition to adult health care, as well as coping with adolescent issues related to sexuality, education, housing, work and finances. 3) Project faculty use outcome data to evaluate the impact of program participation on YSHN families and providers, and produce training modules based on components shown necessary for successful transition. Products are disseminated nationwide to professional and family organizations concerned with YSHN through Raising Special Kids, Family Voices and Exceptional Parent magazine and Web sites. Because youth and families from diverse cultural, ethnic, socioeconomic, urban, suburban and rural backgrounds participate in developing and testing the model, the modules are culturally competent and family and youth-centered. Coordination. The Southwest Institute for Families and Children with Special Needs coordinates the effort of the collaborative partners who include Arizona State University faculty Tanis Bryan, PhD and Karen Burstein, PhD, who serve as Principal Investigators/Project Directors; the Arizona Title V Program and its Chief, Catherine Echeverria, RN, community-based pediatricians, David Hirsch, MD, FAAP and Kevin Berger, MD, FAAP of Phoenix Pediatrics. Echeverria, Hirsch and Berger assist in a) recruiting YSHN participants, b) tracking YSHN across the project and c) disseminating project findings to policy makers and state legislature, and d) providing training and support to adult primary care providers. Team member, Gary Erbstoesser, DO, is an adult primary care physician who 1) accepts YSHN into his practice, 2) tests tools for transition of medical information and training, and 3) identifies other physicians for inclusion in the transition network. Evaluation. The evaluation assesses 1) Input data (e.g., critical stakeholders participate in the identification of issues and the design of solutions), 2) Implementation data (i.e., project goals are met in a timely fashion, and 3) Impact data (e.g., prospective, longitudinal tracking of program effects on YSHN’s transition to adult health, education and vocation opportunities, growth and stability of transition network and interagency collaboration, and consumer and provider satisfaction. Experience to Date. The Transition Network has a) identified adult providers across the Phoenix Metropolitan area who are accepting YSHN as patients, b) developed forms for the Medical Encounter and communication across providers, c) prepared training modules for working with YSHN, care coordination and communication, and negotiating reimbursements from HMOs, and d) developed materials for YSHN, including the Medical Teaching Exam, Systematic Transition Plan, Who Owns Your Body?. The Youth PAR group, 25 16 to 28 year olds with varying types and severity of special health care needs, has been working toward self-determination by a) selecting personal goals, collecting and evaluating progress toward meeting these goals, and b) group goals, for example, evaluating ease of access (physical and social) to local movies, malls, and baseball stadium. The parent group also has been involved in PAR to pursue personal goals, but has been primarily involved in researching topics to assist their youth in working toward independence, e.g., transportation, housing, scholarships. Project staff has been involved actively in disseminating information about transition, and have effectively produced systemic change at the Title V agency regarding CRS inclusion of transition goals and hiring staff dedicated to statewide transition. Based on the work we completed with youth and families,
staff currently is developing a Fast Track (6-8 week program)
that integrates the most effective program components into
a shorter program. This will allow staff to help a much larger
number of youth transition. In addition, participating youth
and staff are developing the curriculum for a Leadership
Training Institute which will be offered in August 2003 to
youth across the State of Arizona. [Articles] [Products]
[Interagency] [Sponsored Meetings] [Presentations]
Bimonthly SWI Steering Committee Meeting- 72 parent and professional representatives from health and human services across Arizona meet to discuss policy and procedural needs of individuals with special health care needs. Arizona State University; University Club Tempe, AZ PRESENTATIONS NATIONAL Getting Youth with Other Health Impairments Up to PAR: Participatory Action Research; 2003 Council for Exceptional Children Annual Convention and Expo: Physical and Health Disabilities (DPHD), Seattle, WA, 04/2003. [HRTW-AZ, BURSTEIN, BYRAN, J.SANDOVAL, M. SANDOVAL, C. WALKER, and J.WALKER] Building Community Health Across the Developmental Continuum; Tri-Regional Meeting for Regions VIII, IX and X: Ten Year Action Plan to Achieve Community Based Service Systems for Children and Youth with Special Health Care Needs and Their Families, Portland, OR, 02/2003. [HRTW-AZ, BURSTEIN] ppt via Web site: http://cshcnleaders.ichp.edu/triregionals2003 Getting Youth Up to PAR: Self-Determination Strategies for Youth with Special Needs, The 19th Annual Pacific Rim Conference on Disabilities, Collaboration and Change: A Future of Choices for Mind, Body, and Spirit Presentation, Honolulu, HI, 02/2003. [HRTW-AZ, BURSTEIN & BRYAN] Using Participatory Action Research to Empower Youth in Transition; 8th Annual Council for Exceptional Children/ Division of Developmental Disabilities Winter Meeting, Kauai, HI 02/2003. [HRTW-AZ, BURSTEIN & BRYAN] Racing to the Future Resources, Washington State Leadership training, Spokane, WA, 11/2002. [HRTW-AZ, Burstein] Participatory Action Research: Using Science to Solve the Problems of Everyday Life for Youth with Special Needs Effective Educational Practices in the New Millennium 3rd Annual Golden Empire Special Education Partnership Conference, Bakersfield, CA, 10/2002 [HRTW-AZ, BURSTEIN & BRYAN] Medical Home and Transition Project Resources and Activities,
Family Voices Region IX Meeting
Racing to the Future overview and introduction, Ear Foundation,
Phx., 12/2002. [HRTW-AZ, Racing to the Future-resources and strategies, University of Arizona, Special Education-Graduate Students, Phoenix, AZ, 12/2002. [HRTW-AZ, J. Walker] Including Transition Goals in Your Exit Plan, Tucson Parent Action Council, Children’s Rehabilitative Services, Tucson, AZ, 11/2002. [HRTW-AZ, M. Haugen] Youth with Special Health Care Needs-Transitioning to Adult Providers-Who should be involved? Office of Oral Health, Arizona Department of Health Services, Phx., AZ, 11/2002. [HRTW-AZ, Haugen] Youth and Transition, St. Josephs Hospital and Barrows Neurological
Exposition, Phx., AZ, Transition Plans for Youth, Children’s Rehabilitative
Services Medical Directors Meeting Spaces and Places: Life’s Transitions across the Developmental Continuum, Children’s Rehabilitative Services Statewide Conference, Mesa Golf Resort, Mesa, AZ, 10/2002. [HRTW-AZ, Burstein] Solving Community Problems Using PAR; Medical Home to Medical Village Conference, Tucson, AZ, 10/2002. [HRTW-AZ, Burstein] Transition for Youth with TBI, Traumatic Brain Injury-Service
Coordinator Training Partners in Transition: Healthy Ready to Work, Pilot Parents
of Southern Arizona, Tucson, AZ Orientation to Racing to the Future Project, Children’s
Rehabilitative Services Staff training Parent Role in Transition, Statewide Parent Action Council,
Children’s Rehabilitative Services Families and Youth in Transition, Children’s Rehabilitative
Services Administrators Meeting, Flagstaff Riding Club, Flagstaff,
AZ, 08/2002. [HRTW-AZ, Haugen] Transition to Adult Care, Phoenix Pediatrics, Phoenix, AZ, 04/2002. [HRTW-AZ, Bryan] Youth Transition,” Arizona Department of Education Parent Information Network Training Conference Estrella Community College, Phx., AZ 04/2002. [HRTW-AZ, Walker] Youth Transition in Arizona, ADHS Community Development
Leaders Statewide Meeting, Hassyampa Hotel, Prescott AZ 04/2002.
[HRTW-AZ, Haugen] COMMUNITY Role of Youth on Community Teams, Community Development Parent Leader Conference, Eagar, AZ, 01/2003. [HRTW-AZ, Haugen] Physician Role in Transition and the Medical Home,” Verde Valley Action Team, WHERE??, 01/2003. [HRTW-AZ, Haugen] Developing Transition Goals, CANNE (Communidades Asistiendo
a Ninos con Necesidades Especial) Building a Healthier Mesa: Community Role in Youth Transition; Mesa, AZ; 12/2002. [HRTW-AZ, Walker] Transition- What Role Does Your Child’s Physician Play? Verde Valley Action Team, Cottonwood, AZ, 11/2002. [HRTW-AZ, Walker] Health Care, Medical Home and Transition, Alliance Community Action Team Meeting, Eagar, AZ, 11/2002. [HRTW-AZ, Walker] “Medical Home and Transition,” overview presentation, CANNES - Community Action Team, San Luis, AZ, 10/2002. [HRTW-AZ, Urbina] Youth in Transition, Mesa United Way, Mesa, AZ, 10/2002.
[HRTW-AZ, Walker] Transition Resources, Sharing Down Syndrome Parent Group, Mesa School Student Service Center, Mesa, AZ, 09/2002. [HRTW-AZ, Walker] Racing to the Future-Bringing it to Your Community, Community Development Parent Leader Retreat, Pinedale, AZ, 09/2002. [HRTW-AZ, Burstein] Medical Home – Transition,” Verde Valley Action
Teams, Verde Valley Community Health Department Youth & Family Roles in Transition, Parent Action Council, Children’s Rehabilitative Services, Tucson CRS, Tucson, AZ, 07/2002. Community Partners – Transition for Youth, Chino Valley
Partnership Meeting, Chino Valley, AZ, 07/2002. [HRTW-AZ,
Walker] Partners in Transition, Mesa Partnership, Mesa Public Schools,
Mesa, AZ, 05/2002. [HRTW-AZ, C. Walker] |
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