Summary

The Continuity of Care for People Aging with Intellectual and Developmental Disabilities (I/DD): A Pilot Training Program aims to build capacity among Direct Support Professionals (DSPs) to observe the early signs and symptoms of emerging illness and disease as they work with clients who have intellectual and developmental disabilities (I/DD) and accurately communicate these observations to nursing services personnel in Community-Based Agencies.

The project is testing the efficacy of an Early Recognition of Signs and Symptoms of Emerging Changes in Health Status Curriculum for DSPs in Community-Based Agencies providing services to adults with disabilities. This project is being developed and disseminated with the support of the University of Illinois College of Nursing Collaborating Center and incorporates principles of primary health care.

Evaluation

• Health Advocacy Scale
• Self-Efficacy for Observing Signs and Symptoms
• Knowledge Scale Recognizing the Importance of Signs and Symptoms
• FASSTrack Software Program - The FASSTrack Software Program collects health-related data on clients receiving services in day/residential progams. Data collected with FASSTrack is connected with State reimbursement rates for healthcare services. Data includes functional status, height, weight, medications, # of health conditions, reports of signs and symptoms of emerging health conditions, chronic health care conditions, level of disability and functional status, days unable to participate in usual activities. Financial costs to the CBAs and society can be calculated using the following health care utilization measures: , reasons for health provider visit, provider type, visits to provider and CBA nurse, emergency departments and hospital visits, and preventive care.

Background

Compared to the general population, people with I/DD experience earlier age-related health conditions and poorer health status. If their caregivers had adequate knowledge and resources available to them to communicate signs and symptoms of emerging health care issues their health care could be managed more effectively. Because people with I/DD have frequently not been taught how to communicate early signs and symptoms of chronic conditions to their caregivers and health care providers, resulting in under-diagnosis, mis-diagnosis, or less chance of receiving prompt treatment, DSPs are in key positions to observe and report early signs and symptoms of illnesses or health conditions. Although nurses may conduct healthcare visit with clients in CBAs, the true responsibility for regular monitoring of and follow-up healthcare for individuals with I/DD falls on DSPs who often assist the nursing staff in the healthcare of clients. Early detection of disease risk may help to reduce the health disparities documented in individuals aging with I/DD. 

Target Population

Staff in community-based agencies

Priority Areas

• Secure additional funding for longitudinal data collection to determine cost-effectiveness of Signs and Symptoms Training and FASSTrack Program.
• Develop Distance Learning Curriculum using blackboard, webinars, surveys, conferences.