What is the issue?

Being able to age at home is important for individuals with developmental disabilities (DD). It makes a difference to their caregivers too. But home care services target the 'average consumer' and adults with DD have different needs. Also, the percentage of adults with DD who require age-related care is likely much higher than current estimates as individuals with DD tend to age prematurely.

In short, there is an urgent need for more knowledge on the health and health care of those with DD who are aging.

How is H-CARDD helping?

The H-CARDD program aims to understand three things when it comes to aging adults with DD:

The age at which the health care needs of adults with DD reseamble the needs of seniors with DD: We found that as early as 50 years of age, adults with DD have levels of frailty comparable to adults without DD aged 80 years or more. For more information, read the AHRQ Report: Aging profiles of adults with and without developmental disabilities in Ontario, visit the AHRQ web page or read about the Town Hall.

The rates of admission the home care services and how these services are used: We found that use of home care is over twice as high among adults with DD, and that use is highest among those 45 to 54 years of age, whereas for adults without DD it is highest among those 75 years or more. See our Town Hall for more information.

We also found that a number of people living in group homes access home care services. Our AHRQ report details the types of services used.

The rates and predictors of admission to long-term care for adults with DD: We found that adults with developmental disabilities (DD) are admitted to long-term care approximately 25 years earlier than those without DD. We also found that annual rates of admission to long-term care are on average 4.5 times higher among persons with DD. Watch our Town Hall to find out more.

For more information read the Aging Project Final Report which includes a comprehensive description of research findings and project activities.

This work aligns with Ontario's Aging at Home Strategy (2010), which enables people to remain healthy and live independently in their own homes. We continue to investigate the factors associated with use of home care and admission to long-term care. We are also exploring different ways of measuring frailty in this population.

For more information, please contact:

Helene Ouellette-Kuntz, PhD, BScN
Professor, Department of Public Health Sciences, Queen's University
Phone: 613 548 4417
Email: helene.kuntz@queensu.ca

Lynn Martin, PhD
Chair and Associate Professor, Department of Health Sciences, Lakehead University
Phone: 807 766 7245
Email: lynn.martin@lakeheadu.ca

The Azrieli Adult Neurodevelopmental Centre

The Azrieli Adult Neurodevelopmental Centre is the first research and education centre in Canada dedicated to improving care for adults with neurodevelopmental disabilities and mental health challenges.  The centre includes several scientists who work closely with trainees, patient and family advisors to study and develop ways to improve the mental health of this population. Scientists at the centre are running several research projects focused on mental health and disability.

More information

Summary: get a quick overview of this study in the research snapshot Adults With Developmental Disabilities and Aging (and in French). Snapshots are easy to understand two page summaries of H-CARDD research findings.

Publications: for scientific journal publications about H-CARDD research, please visit our knowledge exchange section. Recently published on developmental disabilities and aging:

• Frailty as a predictor of institutionalization among adults with intellectual and developmental disabilities.
• Using an accumulation of deficits approach to measure frailty in a population of home care users with intellectual and developmental disabilities: An analytical descriptive study.

Town Hall: learn about a presentation and discussion of the research findings on Frailty, Home Care and Long-term Care of Aging Adults With Developmental Disabilities.

Health care tools: H-CARDD shares and develops tools for caregivers, clinicians and people with developmental disabilities that improve communication and information sharing in health care settings. Visit our health care resources section!