| President’s Message
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The lazy days of summer are fast approaching. It is hard to believe that this year is almost half way over. Let us know how you are spending your summer activities. With Special Olympics Spring event behind us, many families are continuing to be involved in various other sporting events during the summer and if you are involved in something like the Challenger League or other organization we would love to hear about it. Several of the officers, including myself will be stepping down from our current positions within the organization over the next several months. Some of us have carried on in various capacities for the last four or five years. With any organization it is vital that new and fresh leadership step forward for future development. While individual officer positions have been the traditional structure of our organization, we identified key committee groups earlier in the year that could coexist with the leadership for the purpose of caring out the group’s mission and objectives. I am strongly encouraging wider participation within the group at some level so that not only a few are responsible for continuing support. As I make plans to transition out of the current president’s position, we will continue to maintain an active involvement in seeing the group achieve certain visions and dreams. Several of you have already become more involved in the monthly activities and we applaud your contributions. Please review the various areas that you may be able to participate in consider joining in on one of the committees. Dr.
Lawrence G. Leichtman
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Remember to mark August 15th at 7 PM on your calendar. Come to the Junior
League Of Tulsa Building (3633 South Yale).
Next
Meeting June 20th
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Zoo Outing Recap
A Special Thanks
We Need Your Help! Social Committee
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Program Committee
Sharing Our Joy Calendar Committee
Building Committee
New Parent Packet/Video Committee
Young Adult Program Committee
Newsletter Committee
Please consider becoming involved
Thank You!
I would like to take this opportunity to thank you, everyone who has been a part of the Down Syndrome Association of Tulsa. You may know that I am an occupational therapist with SoonerStart. I have worked with and come to know many of you and your children. I have referred families to your group for information, support and friendship. You have provided the educational information needed to conquer medical and development questions. More importantly, many of you have shared your personal stories and provided that often wanted glimpse into the future, something that only you who have been there can give. What you may not know is that I have watched DSAT grow and change over the last 10 years. There have been controversies and heated discussions, but ultimately you have accomplished maintaining an informative supportive network of parents and professionals who are interested in the well being of ALL people. You have increased and improved public awareness in Oklahoma. “Sharing Our Joy” is an absolute benefit to our community. You have sponsored health screenings, held conferences, and informative inservices. You have cared for each other and helped each other through the hard times, sometimes without even knowing it. All of these accomplishments could not have been possible without
each and every one of you. Your support through attending a meeting on
an interesting topic, providing child care during an event, making a phone
call to invite a speaker, or purchasing a calendar to share our joy has
been felt and is appreciated. I hope to be involved for the next ten years
and I am honored to be associated with such a loving organization. Thank
you!
FOR SALE
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Calendar Top of Page June 20th
July 5th - 7th
July 18th
August 15th
August 23rd - 25th
What kind of lights did they have on Noah’s Ark? Flood Lights! Foreword from the Surgeon General
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This is the second in a series Goal #2
“We’re invisible in the data.
Credible scientific knowledge is considered essential to all goals in this Blueprint, from establishing appropriate standards of health care, to training health care providers, to revising financing structures, and improving the capacity of individuals and their families to protect and maintain their health. For example, the lack of population-based data on prevalence of MR and the health status and service needs of this population impedes planning and allocating resources for their care. Failure to monitor the quality of their care hampers detection of prejudicial or inadequate treatment. Recent advances in neurosciences, genetics, psychopharmacology, and other fields of research could improve the diagnosis and treatment of individuals with MR and emotional, behavioral, or psychiatric disorders (dual diagnosis). At the same time, individuals, family members, and health care providers need easily accessible, scientifically accurate, culturally relevant, and understandable information for prevention and health promotion, as well as for diagnostic and treatment decisions. All aspects of health-related research, from biomedical and epidemiologic to health services and ethics, offer multiple opportunities to increase and improve the utility of scientific knowledge on health and MR. Action Steps • Participation: Enable individuals with MR, their families, and their health care providers to partner with professional investigators in identifying health research priorities, and in designing and implementing research relating to health and MR. Potential strategies: Include individuals with MR, family members, and their primary and specialty health care providers in research advisory committees and planning groups to provide input into the development of research proposals and grant submissions. Offer training to lay advisors in identifying research questions and other technical matters. Encourage federally funded health researchers to develop partnerships in which persons with MR, their family members, and other caregivers, including health care providers, are consulted and participate in the planning and conduct of research relevant to MR. • Research agenda: Develop a national research agenda that identifies gaps in existing scientific knowledge related to health and MR, including methodological challenges, priorities, feasibility, and timetables for achieving priority research. Potential strategies: Develop specific agendas for basic, clinical,
and translational research; for studies of the efficacy of wellness and
treatment services and service models for people with MR; for legal and
ethical issues, health care financing, and its relationship to outcomes;
and for other matters identified by the community. Implement the December
2001 research agenda of the Workshop on Emotional and Behavioral Health
in Persons with Mental Retardation/Developmental Disabilities and enhance
research collaborations across multiple research agendas and disciplines.
• Data collection: Collect data on the health status of persons with MR in relation to the utilization, organization, and financing of their health services. Potential strategies: Identify and evaluate existing data on health and MR. Add MR to population-based data collection on health status, health risks, health services utilization, and health care costs. Test methods of identifying patients with MR on Medicaid and other third-party payer claims for purposes of collecting data, while also protecting patient confidentiality. Conduct market research to determine attitudes toward MR of health care providers, and how to change negative attitudes. Survey individual practices, managed care organizations, and localities and States to better understand the experiences of individuals with MR when they seek health care. • Research subject protection: Review current ethical and legal rules for protection of human research subjects as they relate to individuals with MR. Revise these rules as necessary to facilitate the participation of persons with MR in clinical trials and other types of research, with full protection of their autonomy, health, and safety. Ensure that individuals, their families, their health care providers, and their advocates participate as partners in reviews and revisions of these rules. Ensure their participation in Institutional Review Board (IRB) reviews of research proposals relating to MR. Potential strategies: Provide training in legal and ethical rules for protection of human research subjects to lay participants in review and the revision of these rules. Provide training in IRB standards and procedures. • Understanding and use: Provide assistance for individuals with MR, their families, and their health care providers in finding, evaluating, and using health research findings to help in the prevention, diagnosis, and management of medical (including psychiatric), psychological, and oral health conditions, and to inform treatment decisions by individuals and their families. Potential strategies: Establish, and keep current, a national clearinghouse, a website, and a list-serve to guide users in identifying and evaluating research, and to promote their exchange of information and opinions. Design science-based continuing education curricula for licensed health care providers. Translate peer-reviewed journal information, reports of evidence-based best practices, and other findings for lay consumption, and disseminate information to provider groups, and State agencies that serve persons with MR, and provider trade journals. • Research capacity: Increase the number of investigators trained in health and MR research. Potential strategies: Fund undergraduate training and postdoctoral research
fellowships at medical, dental, and other health professions schools and
training programs targeted specifically at issues relevant to MR. Solicit
proposals for multidisciplinary research. Solicit proposals from centers
and programs that provide health care to individuals with MR, especially
those living in their communities. Solicit joint proposals from these providers
and investigators at medical, dental, and other health professions schools
and programs.
Potential strategies: Increase and ensure appropriate use of funds to support research on health and MR, including expansion of studies on dual diagnosis and other disorders for which individuals with MR are at elevated risk. Create prizes and other awards for excellence in health and MR research. Endow chairs for health and MR research at health professions schools. Establish special interest sections in health research organizations. Support special plenary lectures on health and MR at national medical, dental, and other health professions meetings. Publish health and MR research findings in peer-reviewed medical (including psychiatric), dental, psychological, nursing, physician assistant, dental hygienist, and other health-related journals, as well as in health services research and policy journals. DISCLAIMER:
The Down Syndrome Association Of Tulsa does not promote, recommend or endorse
any service, professional or organization. Decisions regarding the
use of any service, professional or organization are the sole responsibility
of the family or guardian.
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| President:
Tracey Wilson (918) 288-7719 or (918) 488-4060 Top of Page Fax (918) 288-7897 E-mail Tracey Wilson Co-Vice Presidents:
Secretary:
Treasurer:
Newsletter:
Calendar Coordinator
Scholoarship/Library Committee
Party Planner
New Parent Packets
Development Coordinator
Web Master
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