Division of Neurodevelopmental and Behavioral Pediatrics

Strong Center for Developmental Disabilities

Program in Aging and Developmental Disabilities—Learn more about 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

PADD Publications

PADD

Developmental Disabilities