Program in Aging and Developmental Disabilities (PADD)
Our Research
Need for Research
In 2002, the US Department of Health and Human Services issued a Report of the Surgeon General’s Conference on Health Disparities and Mental Retardation entitled "Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation." This report supplies fundamental evidence of the barriers to receiving health care and the action steps needed to eliminate existing disparities in care. One of the necessary steps is to expand the knowledge base and available datasets on people with intellectual and developmental disabilities (IDD). Current research literature on adults with intellectual and developmental disabilities shows that the mean age at death and causes of death of adults with IDD are similar to the general population. With extended longevity, later life onset chronic diseases seem to occur with increasing frequency in adults with IDD, but retrospective data from a number of countries suggest that the prevalence of diseases that threaten both functionality and life may be under-diagnosed and under-treated. Under-recognition has many negative ramifications for healthy aging; including increased loss of function, lower quality of life, greater health care costs, need for supports, severity of conditions, and early mortality. However, all of these outcomes are alterable and can be mitigated by early diagnosis; the best way to improve diagnostic procedures is to understand disease age-related prevalence and trajectories. The development of practice standards applicable in health care settings can facilitate timely identification of morbidity and track health status over time. Hence, more accurate and comprehensive data are needed based on large-scale cohorts of adults with I/DD, including those with neuro-developmental conditions, whose aging trajectories have rarely been empirically examined.
Project History
The Strong Center for Developmental Disabilities (SCDD) has had an active research program on health outcomes in older adults with I/DD since the early-1990s. This program has been lead by Philip W. Davidson, Matthew Janicki, and C. Michael Henderson. The initial focus was on aging effect on behavioral and psychiatric morbidity among adults with I/DD. In 1996, Drs. Davidson, Janicki and Henderson began to develop a survey instrument top permit data collection on a wider variety of health conditions, from large numbers of older adults with I/DD. This project quickly expanded to include data collection sites in the US and abroad. Since that time, the data collection instrument, now called the Rochester Health Status Survey (RHSS), has been revised and expanded. The project’s focus has also been narrowed to identifying risk factors for morbidity that threatens maintenance of function and life. The project now includes many collaborators both in the US and in other countries.
Major Findings from Analyses Conducted on RHSS Data
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Health trajectories are for persons with I/DD and persons without I/DD of equivalent age
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Risk factors for later life morbidity appear similar among persons with and without I/DD
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Most life threatening morbidities occur with similar prevalence in people with and without I/DD
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Age-related functional ability declines with increasing organ system illness among people with I/DD
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Some life-threatening conditions, such as Type-II diabetes, can be identified in people with I/DD in primary care settings
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Presence of I/DD may complicate identification of some age related illnesses that may compromise function and survival
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Lifelong mental health problem diagnoses decline with increasing age, but age-associated diagnostic conditions remain static with age
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Health trajectories appear to be more similar than dissimilar with increasing age across cultures
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Obesity is at least as prevalent among older people with I/DD as it is among people without I/DD
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Monitoring of risk factors for later life morbidities is as accessible among people with I/DD as with people without I/DD
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Compromising mental health problems seem to decline in prevalence with increasing age among people with I/DD
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Specific Neurodevelopmental disabilities, such as Cerebral Palsy, may have altered health trajectories
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Some trends are emerging about health issues among select Neurodevelopmental conditions, but more data are needed to permit specific analyses to be conducted
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Health and function can be a function of cultural nutritional and wellness practices
View the PADD Publications.