Collaborative Research - Quality Outcomes
Collaborative Research - Quality Outcomes


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.

Key Findings

  • The number of older adults with IDD in Ontario (45-84 years of age) is projected to increase by as much as 20.5% between 2010 and 2021. [1]

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  • The concept of frailty captures the multi-dimensional nature of age-related decline in functioning. MAPS researchers are among 4 groups studying frailty and IDD. [2]
  • A valid frailty index for adult home care users with IDD comprised of 42 deficits across 5 domains was developed and validated by our team. [3]
  • To be implemented in practice, a frailty measure must be brief, relevant, and inform care decisions. Strong ties between frailty researchers and practitioners and policymakers are important to successful implementation of measures developed. [4]
  • The prevalence of frailty is 3 times higher among adults with IDD. [5]
  • The frailty index predicts admission to long-term care from home care among adults with IDD, independent of age, sex, rural status, caregiver inability to continue supporting the individual, living situation and level of cognitive function. [6]
  • A review of home care assessment data in Ontario revealed that just under 1% of the home care population had a diagnostic entry related to IDD. [7]
  • IDD terminology is not consistently used in home care records. There is a need for education on use of standard cods to identify IDD. [7]
  • Home care use is higher and occurs earlier among adults with IDD (2009-2014). [8]


[1] Ouellette-Kuntz, H., Martin, L., & McKenzie, K. (2016). Population aging and intellectual and developmental disabilities: Projections for Canada. JPPID, 13(4), 254-260.  doi: 10.1111/jppi.12172

[2] McKenzie, K., Martin, L. & Ouellette-Kuntz, H. (2016). Frailty and intellectual and developmental disabilities: a scoping review. Canadian Geriatrics Journal, 19 (3), 103-112.

[3] McKenzie, K., Ouellette-Kuntz, H. & Martin, L. (2015). 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. BMC-Geriatrics, 15: 170. DOI: 10.1186/s12877-015-0170-5.

[4] McKenzie, K., Martin, L., & Ouellette-Kuntz, H. (2016). Understanding implementation of frailty measures among adults with intellectual and developmental disabilities. JODD, 22(2), 91-100.

[5] McKenzie, K., Ouellette-Kuntz, H., & Martin, L. (2017). Applying a general measure of frailty to assess the aging-related needs of adults with intellectual and developmental disabilities. JPPID, 14(2), 124-128.

[6] McKenzie, K., Ouellette-Kuntz, H. & Martin, L. (2016). Frailty as a predictor of institutionalization among adults with intellectual and developmental disabilities.  IDD, 54 (2), 13-16.

[7] McKenzie, K., Ouellette-Kuntz, H. & Martin, L. (2017). Needles in the haystack: Using open-text fields to identify persons with intellectual and developmental disabilities in administrative home care data. RIDD, 69, 85-95.

[8] Martin, L., Ouellette-Kuntz, H., & McKenzie, K. (2017). Care in the community: home care use among adults with intellectual and developmental disabilities over time. JPPID, 14(3), 251-254.


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.

Current Projects

Successful aging – frailty, transition and inclusion into senior services (2017-2019)
  • Funded by Ministry of Community and Social Services, Employment and Modernization Fund  
  • This project led by Reena and Mary Centre of the Archdiocese of Toronto involves applying our frailty index to individuals with IDD 45 years and older and evaluating the impact of care planning across sectors (home care and developmental services) with knowledge of frailty status these individuals.
Assessing frailty in adults with intellectual and developmental disabilities to improve care planning (2017-2018)

Clarabelle Lee, an undergraduate student in Life Sciences at Queen’s University, joined the Aging Project team in July. She is evaluating the extent to which the frailty index we have developed based on the RAI-HC (home care assessment data) can be computed through review of client files at Ongwanada. Currently over 100 clients have been reviewed and data collection is expected to be completed in the Fall. The project is ongoing with results expected next Spring.

How best to support individuals with IDD as they become frail: A Consensus Statement (2017-2018)
  • Since the late 1990s, policy makers, service providers and researchers have become increasingly concerned about the size and changing needs of the aging population with intellectual and developmental disabilities (IDD). More recently, clinicians and researchers have sought to better characterize aging related needs of this population through the concept of frailty – a multi-dimensional state of vulnerability, with cognitive, social, psychological, biological and environmental aspects associated with aging and adverse outcomes (e.g. falls, hospitalization, institutionalization, mortality). Research related to frailty among adults with IDD is relatively new, and to date has only been conducted by three research teams internationally, who have largely focused on measuring and developing measures of frailty for use in this population. No studies have examined the evidence of effectiveness of specific interventions to address the needs of frail or pre-frail individuals with IDD.
  • In the absence of a body of research to inform best practice, this project aims to produce an international consensus statement regarding the best approaches to supporting individuals with IDD as they become frail. It is hoped that such a statement will promote awareness of frailty in the field of IDD, and guide care planning  considerations when an individual is identified as frail or pre-frail.
  • An international consultation is underway led by Dr. Hélène Ouellette-Kuntz and Dr. Lynn Martin. If you wish to participate, email
Mortality among individuals with intellectual and developmental disabilities (2017)
  • Frailty is associated with adverse health outcomes including premature mortality and admission to long-term care. Through this project, we examine patterns of mortality over time and avoidable mortality, in particular, among adults with IDD in Ontario and in Manitoba.
  • Elizabeth Stankiewicz, a MSc student in the Biostatistics program at Queen's University, completed analyses for the Ontario portion of the project as part of a practicum placement at the Institute for Clinical Evaluative Sciences - Queen's.  These analyses revealed mortality rates among adults with IDD in Ontario were about 6 times higher than the rates found in Ontarian adults. Avoidable mortality rates were also in excess, about 4 times greater for those with IDD. Causes of death were also examined and found to be relatively consistent between Ontarians with IDD and all Canadians.
  • Papers are now being prepared which will report on patterns over time in Ontario and Manitoba.
  • This research is being led by Hélène Ouellette-Kuntz with collaboration from Elizabeth Stankiewicz  and Michael McIsaac at Queen's University (Biostatistics), Shahin Shooshtari at the University of Manitoba, and Robert Balogh from the University of Ontario Institute of Technology.

Past Projects

Assessing improvement in risk prediction due to the Frailty Index (2017)
  • Frailty is a well established predictor of admission into long term care (LTC) in the elderly population. Many individuals with intellectual and developmental disabilities (IDD) experience the effects of ageing earlier in life than those without IDD and as a result are generally more frail. Assessment of frailty may appear high when using a generic frailty marker, as some life long disabilities associated with IDD may be interpreted as a sign of frailty. The Home Care-Intellectual Developmental Disabilities Frailty Index (HC-IDD FI) was developed for use in home care users with IDD. Improvement in prediction accuracy due to the HC-IDD FI was measured using different statistical approaches (e.g. net reclassification improvement for transitions into LTC or death by one-year). In all cases, the HC-IDD FI was found to improve prediction of transitions out of home care.
  • The HC-IDD FI is an easy measure to calculate using readily available data for adults with IDD who have been assessed for home care in Ontario. Using this measure to assess a individual’s risk of being admitted to LTC  could help service providers and family members establish a plan to keep avoid or delay admission to LTC, reducing the number of pre-mature admission into LTC among individuals with IDD.
  • This project was completed by Elizabeth Stankiewicz, MSc Epidemiology with specialization in Biostatistics at Queen's University, under the supervision of Dr. Hélène Ouellette-Kuntz and Dr. Michael McIsaac.
Enhancing understanding and identifying best practices in system access and navigation: Working together to support frail adults with developmental disabilities as they age in the community (2015-2017)

The overall goal was 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 was 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 were also examined by place of residence (e.g., those receiving home care in private homes and residential settings).

This project was 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 actively engaged with the Ontario Partnership on Aging and Developmental Disabilities (OPADD) and interRAI throughout the project for input and insight into analyses and findings.

A frailty measure for persons with intellectual and developmental disabilities using aging care (2015-2016)

The goal of this project was 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 was 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 informed recommendations for implementation of the frailty tool in home care settings.

This project was funded by the Technology Evaluation in the Elderly Network (TVN) and Reena, and was co-led by Hélène Ouellette-Kuntz and Lynn Martin. Reena was a strong partner in this work, and assisted in the dissemination of findings and development of recommendations.

Working together to support transitions (2014-2015)

(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


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