• 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]
• 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.[9]
• The HC-IDD Frailty Index significantly improves prediction of admission to long-term care or death among home care users with IDD. [10]
• 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. [11]
• 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. [12]
• 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.[13]
• 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. [14]
• The international community agrees on two guiding principles and seven actions for support adults with IDD who are frail in the community. [15]
• 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. [16]

[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.

[9] 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.

[10] 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.

[11] 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

[12] 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

[13] 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

[14] 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

[15] 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

[16] 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.