Champions Newsletter

newsletter created for: youremail@youremailaddress.com	May 16, 2005


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Getting the Word Out: Issue Brief #2 Do you need some ideas about how to more effectively reach the variety of stakeholders in your system of care, such as parents and parent groups, service providers, agency administrators, and legislators? In 2004, the Champions for Progress Center hosted a series of Multi-State meetings. The state CSHCN teams that attended the meetings discussed and reported on what helped them improve their communication among their stakeholders. These strategies, tools, and resources have been compiled in Issue Brief #2. There are a couple of strategies for reaching out to and involving stakeholders. There are also discussion questions for state and community teams to facilitate information sharing and relationship building; there is also a list of web links and resources. Getting the Word Out: Issue Brief #2 Director Position Open for the Office of CYSHN at CRDC There is an exciting leadership opportunity at the Child Development and Rehabilitation Center (CDRC), Oregon Health & Science University (OHSU). They are searching for a new Director for the Office for Children and Youth with Special Health Needs (CYSHN). The position has overall responsibility for administration of the programs, services and activities supported by the Title V Block Grant and other funds allocated for this purpose. In Oregon, the Office for CYSHN is located at CDRC. The CDRC also includes the Oregon Institute on Development and Disabilities (a University Center on Excellence in Developmental Disabilities) and numerous interdisciplinary tertiary care clinics. This is a unique combination of public health, clinical, research and training activities. Requirements for the Director's position include a Master's degree (minimum) or its equivalent in a health field and extensive work experience in a public health or human services related agency. A licensed health professional with public health and CYSHN background is preferred. An academic appointment at OHSU is available for qualified applicants. This position is available July 1, 2005. Please submit CV or resume to: OHSU/CDRC, Attn: Brian Rogers, MD, PO Box 574, Portland, OR 97207. CDRC Position Announcement as a Word document Transition to Adult Health Care: A Two-Part Training Guide According to Patti Hackett, this is high quality, comprehensive and friendly curriculum for skill-building providers, families and youth! This training guide is intended to serve as a framework for anyone interested in helping young people with special health care needs and their parents prepare for the transition to adult health care. The guide has been divided into two parts: Part One, aimed at parents of children with special needs, and Part Two, aimed at the young people themselves. (94 pp, 2005) This training was developed by the Healthy & Ready to Work Wisconsin at the Waisman Center, University of Wisconsin. For more information contact: Beth Swedeen swedeen@waisman.wisc.edu http://www.waisman.wisc.edu/hrtw/Adult_Teen.pdf Case Study of Quality Improvement in Medicaid: New York's Monroe Plan for Medical Care The report referred to below includes a discussion of improving the quality of care for children with asthma. The Monroe Plan for Medical Care, a managed care organization founded in 1970, has a longstanding commitment to improving the quality of care for its members. New York State's Medicaid incentive program has rewarded these efforts and enabled the plan to invest in new and innovative quality initiatives. The case study is included as part of the April Update from The Commonwealth Fund. Case Study: http://www.cmwf.org/publications/publications_show.htm?doc_id=274106#casestudy National Council on Disability Seeks Americans with Disabilities Act Impact Testimony WASHINGTON - The National Council on Disability (NCD) is collecting written testimony from people with disabilities, their families, and their advocates on the impact the Americans with Disabilities Act (ADA) of 1990 has had on their lives. The NCD is an independent federal agency charged with making recommendations to the President and Congress to enhance the quality of life for all Americans with disabilities and their families. In 1986, NCD first proposed and then drafted the original Americans with Disabilities Act. The ADA was hailed as a major civil rights law guaranteeing equal opportunity for Americans with disabilities to participate more fully in their communities, to have greater access to goods and services, and to enjoy more employment opportunities. Testimony is sought regarding the extent to which the ADA has achieved its goals of equality of opportunity, full participation, independent living, and economic self-sufficiency for people with disabilities. The information received will be added to a body of data currently being assembled from a variety of sources to be analyzed and transmitted to the President and Congress in a report to be published in fall 2005. Testimony is sought regarding: Telecommunications: Has the ADA had an impact on the ability of people who have hearing and/or speech impairments to communicate by telephone? Employment: Has the ADA improved employment opportunities and job retention for people with disabilities? Public Services: Are goods and services provided by local and state agencies more accessible to people with disabilities because of the ADA? Public Accommodations Operated by Private Entities: Are goods and services provided by businesses more accessible to people with disabilities because of the ADA? General comments on the ADA Please send written comments on or before May 15, 2005, to Julie Carroll, National Council on Disability, 1331 F Street, NW, Suite 850, Washington, DC 20004 or jcarroll@ncd.gov. For more information, contact Mark Quigley or Julie Carroll at 202-272-2004. "The provision of integrated services by family centres and New Community Schools" From the the Joseph Rowntree Foundation website, this research was done in Scotland and focused on families' response to systems development efforts. It is interesting to see research about this issue from another country. This study of four integrated children's services across Scotland found that, from family's perspectives, continuity in services is very important. (Joseph Rowntree Foundation, Seeking solutions to social problems, The Homestead 40 Water End York YO30 6WP Tel +44 (0)1904 629241 Fax +44 (0)1904 620072 Web www.jrf.org.uk Charity number 210169) http://www.jrf.org.uk/redirect.asp?url=findings/socialpolicy/0235 A story worth reading... Victoria "Tory" D'Amour was born with a congenital birth defect called Amniotic Band Syndrome, which caused her to lose her right hand. Throughout her life, Tory has not let this slow her down, being able to do almost anything she wants to or needs to without the use of prosthetics. However, when Tory decided she wanted to play cymbals in the winter percussion group, she found a new set of challenges to overcome. Read her story at: http://www.salemobserver.com/special/tory/

newsletter created for: youremail@youremailaddress.com	May 16, 2005

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The Champions for Progress Newsletter if funded as part of the Leadership Development for Implementation of Systems of Care for Children and Youth with Special Health Care Needs Cooperative Agreement (#U42MC00241), funded by the Maternal and Child Health Bureau, Health Resources and Services Administration (DHHS) to the Early Intervention Research Institute at Utah State University. The Champions for Progress Center would like to thank John Reiss of the Institute for Child Health Policy at the University of Florida for his work collecting newsitems for this Newsletter.