What is it?

An overview of the challenges facing people with IDD as they get older, the available research on this area, and best practices on serving this population.

What problem does it aim to solve?

People with IDD are a significant share of the population, but they are underserved, despite the fact that they have many health and aging challenges. These challenges are in part due to their health conditions themselves, but also because they experience worse care due to ableism, as well as inadequate resources. For example, dental care for adults is not covered by Medicare and many people with IDD lose dental coverage once they turn 18.

How does it work?

People with IDD, such as those with Down Syndrome tend to experience accelerated aging as a result of chromosomal abnormalities. Frailty tends to set in earlier. However, providing consistent and supportive care can help delay frailty and keep people living more independently for longer. A more holistic approach would also include better supporting caregivers, boosting services like paratransit, expanding dental coverage and enhancing coordination between various medical providers.

What are the real-world implications?

“Reasons individuals with IDD see primary care providers less often than the general population: Limited access to knowledgeable and experienced primary care providers; Sensory and/or behavioral issues that impact the person’s ability to cooperate with examinations and evaluations;
Physical challenges that may limit access to a health care facility;
Decreased ability of individuals with IDD to self-report signs and symptoms of illness;
Individuals with IDD and their caregivers overlooking subtle changes in physical health;
Confusion between conditions associated with IDD and symptoms of an acquired cognitive impairment;
Individuals and/or their caregivers unaware of the need for routine oral health assessments;
Difficulty measuring changes in level of functioning over time;
Diagnostic overshadowing”

What are the next steps?

“Seven recommendations for a person-centered approach to planning and aging in place for individuals with IDD, International Expert Panel Recommendations:
Earlier consideration of frailty than in the general population;
Improvement and maintenance as viable goals;
Inter-sectoral collaboration to coordinate comprehensive multi-disciplinary assessments and actions;
Safety as a priority;
Planning for the future;
Recognition of the needs of formal and informal caregivers;
Acknowledgment the current evidence base is lacking and requires more investigation.
The panel acknowledges that their consensus is the work of experts and that direct input from individuals with IDD themselves and their caregivers is needed.”

Source

“Ageism and Ableism in Individuals Aging with Intellectual and Developmental Disabilities”, Dental Clinics of North America, Volume 69, Issue 1, Pages 103 – 114, January 2025

Authors

Christine Wieseler PhD
Department of Philosophy, Santa Clara University, 500 EL Camino Real, Santa Clara, CA 95053, USA

Elisa M. Chávez DDS
Diagnostic Sciences, Pacific Center for Equity in Oral Health Care, University of the Pacific, Arthur A. Dugoni School of Dentistry, 155 5th Street, 4th Floor, San Francisco, CA 94103, USA

Janet A. Yellowitz DMD, MPH
Geriatric Dentistry, University of Maryland School of Dentistry, 650 West Baltimore Street #3211, Baltimore, MD 21201, USA