Aging is an emerging topic in the field of intellectual and developmental disabilities (IDD). To date, our aging-related work has focused on: (1) determining the current and projected size of the aging population with IDD in Ontario, Canada; (2) frailty – including at what age adults with IDD experience frailty, how to measure this concept in a population with lifelong vulnerabilities, and changes in frailty status over time; (3) examining rates of admission to home care services and patterns of use among adults with IDD, and (4) studying rates and predictors of admission to long-term care among adults with IDD.
- The subset of adults with IDD is growing. Approximately 12% of adults with IDD in our Ontario sample were aged 65 years or more in 2009/10, compared to 17% in the general population.
- By 2021, this proportion of adults with IDD over the age of 65 is expected to be over 1.6 times higher.
- By 50 years of age, adults with IDD show levels of frailty comparable to the general population aged 80 years or more.
- Frailty measures that take into account lifelong, pre-existing impairments are needed to better understand frailty in this subset of the aging population, and inform related planning and decision-making.
- Adults with IDD use aging-related services earlier, and more often than adults without these disabilities. In our sample, admissions to home care was over twice as high among adults with IDD, and admissions to long-term care were between three and nine times higher.
- Consultations with knowledge users, including adults with IDD, family members, direct service providers and decision-makers in the developmental services and health care sectors have said that the system is not meeting the needs of this subset of the aging population.
To see how one person experienced the transition to long-term care, please see this video.
To learn about our work on frailty and intellectual and developmental disabilities, watch our webinar here.
Our overall goal is to enhance understanding in Developmental Services by examining evolving support needs of adults with developmental disabilities as they age. To this end, a retrospective, observational, longitudinal research design will be used to examine frailty, and changes in frailty status in the population of adults with developmental disabilities receiving home care services between 2003 and 2015. These will also be examined by place of residence (e.g., those receiving home care in private homes and residential settings).
This project is funded by an Ontario Ministry of Community and Social Services Developmental Services Research Grant (2015-2017), and co-led by Lynn Martin and Hélène Ouellette-Kuntz. The research team will actively engage with the Ontario Partnership on Aging and Developmental Disabilities (OPADD) and interRAI throughout the project for input and insight into analyses and findings.
The goal of this project is to improve community care and clinical outcomes of Canadians with intellectual and developmental disabilities who are frail by providing a tool to measure frailty in this population. Development of the tool will be based on a literature review and clinical information available in interRAI instruments (which are used in multiple sectors in Ontario, Canada, and worldwide). Learnings from key informant interviews will inform recommendations for implementation of the frailty tool in home care settings.
This project is funded by the Technology Evaluation in the Elderly Network (TVN) and Reena, and is co-led by Hélène Ouellette-Kuntz and Lynn Martin. Reena is a strong partner in this work, and will assist in the dissemination of findings and development of recommendations.
(2014-2015), funded by an Ontario Ministry of Community and Social Services DS Research Grant Enhancement Fund
Principal investigators: H. Ouellette-Kuntz & Y. Lunsky
Partners: OPADD, Ongwanada