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 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. 
- 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. 
- 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. 
- 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. 
- The prevalence of frailty is 3 times higher among adults with IDD. 
- 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. 
- 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. 
- IDD terminology is not consistently used in home care records. There is a need for education on use of standard cods to identify IDD. 
- Home care use is higher and occurs earlier among adults with IDD (2009-2014). 
- Assessing frailty among again adults with IDD using developmental services agency records requires the systematic recording of changes in function to account for the dynamic nature of frailty.
- The HC-IDD Frailty Index significantly improves prediction of admission to long-term care or death among home care users with IDD. 
- There is no straightforward answer to whether or not where a person lives has an impact on home care services in Ontario. Clinical complexity drives receipt of nursing and therapy services but use of other services (meals, homemaking, home health aides) tend to be more common among those living in group homes. 
- Increasing age, Down syndrome, and living in a group home are significant predictors of deficit accumulation among adults with IDD. Frailty should be monitored among adults with IDD starting at age 40, those with Down syndrome, and those who live in group homes. 
- While the proportion of adults with IDD admitted to long-term care facilities in Ontario dropped from 1.6% in 2009/10 to 1% in 2012/13, a small proportion of younger adults (<40 years old) with IDD continue to be admitted. Mental illness and/or addiction as well as frailty are stronger predictors of admission to long-term care in adults with IDD than in the general population.
- Once frail does not mean always frail. Within a 6-12 month period, non-frail individuals can become frail or die, and frail individuals can improve to the extent that they are no longer frail. Health-related stability and improvement should be viable goals of care planning for adults with IDD as they age. 
- The international community agrees on two guiding principles and seven actions for support adults with IDD who are frail in the community. 
- Champions, clear identification of team members and roles, access to shared information and use of a common assessment tool are key to sustaining intersectoral collaboration (namely between health and social services) to support adults with IDD who are frail. 
 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
 McKenzie, K., Martin, L. & Ouellette-Kuntz, H. (2016). Frailty and intellectual and developmental disabilities: a scoping review. Canadian Geriatrics Journal, 19 (3), 103-112.
 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.
 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.
 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.
 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.
 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.
 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.
 Lee, C., Ouellette-Kuntz, H. & Martin, L. (2019). Applying the HC-IDD Frailty Index to Developmental Services Agency Chart Data. Journal on Developmental Disabilities,24(2), 43-50.
 Ouellette-Kuntz, H., Stankiewicz, E., McIsaac, M. & Martin, L. (2018). Improving prediction of risk of admission to long-term care or mortality among home care users with IDD. Canadian Geriatrics Journal, 21(4), 303-306.
 Martin, L., Ouellette-Kuntz, H., & McKenzie, K. (2018). Use of home care services among adults with intellectual and developmental disabilities in Ontario: Does where you live matter? Research and Practice in Intellectual and Developmental Disabilities. DOI: 10.1080/23297018.2018.1443023
 Ouellette-Kuntz, H., Martin, L. & McKenzie, K. (2018). Rate of deficit accumulation in home care users with intellectual and developmental disabilities. Annals of Epidemiology, 28(4), 220-224.DOI:10.1016/j.annepidem.2018.01.010
 Ouellette-Kuntz, H.,Martin, L., & McKenzie, K. (2017). The risk of reinstitutionalization: examining rates of admission to long-term care among adults with intellectual and developmental disabilities over time. Journal of Policy and Practice in Intellectual Disabilities, 14(4), 293-297
 Martin, L., Ouellette-Kuntz, H., & McKenzie, K. (2017). Once frail, always frail? Frailty transitions in home care users with intellectual and developmental disabilities. Geriatrics & Gerontology International,18, 547-553.DOI: 10.1111/ggi.13214
 Ouellette-Kuntz, H., Martin, L., Burke, E., McCallion, P., McCarron, M., McGlinchey, E., Sandberg, M., Schoufour, J., Shooshtari, S. & Temple, B. (2018). How best to support individuals with IDD as they become frail: A Consensus Statement. Journal of Applied Research in Intellectual Disability. DOI: 10.1111/jar.12499
 Martin, L., Deck, E., Barabash, T.& Ouellette-Kuntz, H. (accepted January 2020). Intersectoral collaboration in the context of supporting adults with intellectual and developmental disabilities who are frail. Research and Practice in Intellectual and Developmental Disabilities.
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.
To access resources in French, consider our infographics: Un énoncé de consensus international, La collaboration intersectorielle, “how to” guides: Un énoncé de consensus international, videos: Un énoncé de consensus international, la collaboration intersectorielle, and other knowledge exchange tools: Comprendre le vieillissement et la fragilité, et Comprendre la collaboration.
Funded by the Canadian Institutes of Health Research
This will build on our project currently funded through the Canadian Frailty Network, and enhance dissemination of the consensus statement to a number of audiences, including: international researchers in the field of IDD, professionals working in the field of IDD (e.g. front-line, administrators, decision-makers), as well as adults with IDD and families. Funds will also be used to further develop related knowledge translation (KT) products and tools to facilitate the uptake of the consensus statement recommendations and, ultimately, promote healthy aging in the community among this vulnerable population.
Funded by the Canadian Frailty Network and Reena
This study explores the ways in which home care and developmental services providers collaborate to support frail adults with intellectual and developmental disabilities (IDD). Using a transdisciplinary approach, the proposed study will build on current knowledge related to action on frailty in IDD, and conditions for effective intersectoral collaboration (i.e. necessity, opportunity, capacity, relationships, planned action, and sustained outcomes), to product a series of fact "Call to Action" resources (i.e. video, fact sheets) to facilitate application of knowledge into practice.
Promoting Intersectoral Collaboration to Support Adults with IDD who are frail in the Community.(2019). Speakers: H. Ouellette-Kuntz, T. Barabash, & L. Martin.
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.
Funded by the Canadian Institutes of Health Research as part of H-CARDD
Strategies to reduce readmissions to hospital include follow-up with a primary care provider. The optimal time of this follow-up is unclear with recommendations ranging from 72 hours to 3 weeks. Research suggests that the optimal time depends on the population and the conditions for which patients were initially hospitalized.
Beatrice Suero, a MSc student in the Biostatistics program at Queen's University, is undertaking an analysis of health administrative data to determine the optimal time to a primary care follow-up after older adults with IDD (40 years and older) are discharged from hospital, subsequent to an ambulatory care sensitive condition admission. This project is co-supervised by Hélène Ouellette-Kuntz and Paul Peng
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.
This work resulted in the identification of two core principles (i.e. person-centered planning approach and aging in place) that should guide actions related to seven recommendations:
- Frailty must be considered earlier than in the general population
- Improvement and maintenance are viable goals
- Intersectoral collaboration is needed to coordinate comprehensive, multidisciplinary assessments and actions
- Safety is a priority
- Planning for the future is important
- Informal and formal caregivers also have needs
- The evidence base must be grown
As an undergraduate student in Life Sciences at Queen's University, Clarabelle Lee joined the Aging Project team. She evaluated the extent to which the frailty index we have developed based on the RAI-HC (home care assessment data) could be computed through review of client files at Ongwanada. She found that only 13 of the 42 items needed to calculate the frailty index could be identified; with these, a chart-derived frailty score was calculated. The chart-derived score was found to be associated with age, level of iDD, and living arrangement; it was also associated with hospitalization within the following year. There was poor agreement, however, between the chart-derived score and the original frailty index score. Based on this work, it is recommended that developmental services agencies more systematically record deficits associated with frailty as well as changes in them over time.
Through a practicum placement at ICES-Queen's, Elizabeth Stankiewicz, a MSc student in the Biostatistics program at Queen's University, examined patterns of mortality over time among adults with IDD in Ontario. Her 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. Elizabeth's work, which relied on health administrative data held at ICES Queen's, was supervised by Hélène Ouellette-Kuntz and Michael McIsaac. It included a collaboration with Shahin Shooshtari at the University of Manitoba, and Robert Balogh from the University of Ontario Institute of Technology.
- 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.
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.
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.
(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