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Tampa Scientific Conference on Intellectual Disability,
Aging, and Health
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December 7-9, 2002 in Tampa, Florida
School of Public Health, University of South Florida
PDF version for printing (in a new window)
Adults with lifelong intellectual and developmental disabilities (I/DD) represent a significant segment of adults with lifelong disabilities in the United States. They represent an accessible population and one that is the focus of significant state legislative activities and mandated services. They also represent a group of individuals with a broad range of co-morbid conditions and health needs.
Over the past decade, NIA has recognized the need for more research on aging in the I/DD population. In 1989, a program announcement [NIH Guide, 18 (19), June 2, 1989] was issued calling for applications focused on adults with I/DD as they grow old. The announcement emphasized the need for research in five areas, including demography and epidemiology, adaptive functioning, social interactions and family support, intervention strategies, and service and care models. Few competitive grants addressing these issues have been funded. Moreover, the Announcement addressed neither health-related studies, nor fundamental biological research, in large part because few promising hypotheses were available at that time.
In the intervening years since the NIA called for proposals, the urgency for information about older adults with I/DD has intensified, and some new hypotheses may be emerging. A new look at research needs is in order. The need for information about the health status of this population was one of the main findings of a report prepared by a task force led by Dr. Matthew P. Janicki and issued by the World Health Organization. That report focused on identifying health issues in the target population that would be of concern to policy makers. Its products include a special issue of the Journal of Applied Research in Intellectual Disabilities and three books to be published by Blackwell Science in 2002-2003. However, these materials summarize in only a general way the research issues facing this field, and do not propose a research agenda for the United States.
In late 2001, the US Public Health Service sponsored two important meetings dealing with health or mental health issues in persons with I/DD. The first was a workshop on emotional and behavioral health sponsored by the NIH and co-sponsored by the Joseph P. Kennedy Jr. Foundation. The second was the Surgeon General’s meeting on health disparities and mental retardation. Both meetings dealt with important research questions, but largely excluded discussion of older adult and aging issues.
The Tampa conference had three aims:
· summarize the scientific data on health status of and medical care applications for older adults with I/DD, the related effects of long-term caregiving on the health of family caregivers, and the implications of these issues for health. The meeting extended outcomes of recent meetings on health and mental health disparities in persons with I/DD but which did not directly address aging issues, such as the WHO conference, the Surgeon General's meeting on Health Disparities in Mental Retardation and the NIMH meeting on Dual Diagnosis. This meeting brought together scientists and related workers from the world community to discuss the current status and future directions of basic and translational research in several key areas pertaining to health and aging in persons with I/DD. The post-conference consensus report led to post-conference publications following the conference.
· Develop recommendations for future research. The project steering committee prepared a summary of research issues and recommendations for future research.
· Define salient areas for medical concern and surveillance based on the extant literature and practice findings of physical conditions and diseases that appear to have particular incidence in middle age and aging adults with I/DD. Recommendations were developed for the establishment of practice guidelines for medical care.
The Tampa Conference was organized and hosted by the following: