Promoting intersectoral collaboration to support frail older adults with intellectual and developmental disabilities in the community
About the Project:
Adults with intellectual and developmental disabilities (IDD) experience higher rates of frailty, use aging care services at earlier ages, and the subset aged 65+ years is increasing. However, once frail does not mean always frail – stability and improvement are viable goals of care, and frail adults can be successfully supported in the community.
In a knowledge transfer webinar held with nearly 200 people across Ontario (with representation of family members, researchers, service providers and decision-makers), the majority of participants viewed the health and developmental services sectors as not ready for the aging population with IDD. Participants in both sectors had a shared understanding of the need for system reform, improved collaboration, and integration of resources. While examples of inter-ministerial partnerships that successfully helped persons with IDD to remain in the community were identified, these were not commonplace or happening to the same extent across the province. Participants shared a desire to act on existing knowledge and do better.
This study builds on a successful program of research on frailty in older adults with IDD and aims to identify key elements for effective collaboration and partnership between developmental services agencies and home care providers to support frail adults with IDD in the community. An in-depth case study and document review will be conducted to identify successful strategies for intersectoral action to support frail adults with IDD in the community, and to produce related “Call to Action” resources for adults with IDD, families, and providers.
Project Team
Principal Investigators:
- Lynn Martin, PhD — Lakehead University
- Hélène Ouellette-Kuntz, PhD — Queen’s University
Co-Investigator:
- Virginie Cobigo, C.Psych — University of Ottawa
Knowledge User:
- Sandy Stemp — Reena
HQP:
- Stephen Lam — Queen’s University
Project contact: Lynn Martin — lynn.martin@lakeheadu.ca
CAT2018-35
Keywords: intersectoral collaboration; intersectoral partnership; home care; developmental services; community care; frailty; intellectual disabilities; developmental disabilities; case study
Key Findings for Families
Working together to help older adults with IDD
• It is important that people with IDD, their families and professionals talk about changes in health as the person gets older.
• It is important that everyone who supports the person with IDD knows what to do when health gets worse, and how to do it.
• There are tools that can help you understand what to do when health gets worse, and to make sure that your team works together (www.mapsresearch.ca).
Why This Study Matters
We know health and needs can change as you get older, but it can be hard to know what to do about it. We developed tools to help people with IDD, families, and professionals work together to support people with IDD as their needs change.


Suggestions on how these findings could impact frail older adults and/or their family caregivers and how this might be measured
• Our tools can help people better understand changes in health and needs with age
• Our tools can help people and families participate in decision-making with their teams about the supports and services that are needed
• We hope that using our tools will help to identify problems and think of solutions to those problems earlier.
Key Findings for Policy
• An international consensus statement on how to best support adults with IDD who are frail is a valuable tool to support real-world support planning.
• Organizations must promote and support intersectoral collaboration between health care and developmental services providers.
• Infographics, videos, and workbooks to promote awareness of frailty and to support intersectoral collaboration can be found here (English and French): www.mapsresearch.ca
Why This Study was Needed
In the community, adults with IDD often receive support from both the health and developmental services sectors. While there are examples of inter-ministerial partnerships that successfully support Ontarians with IDD, these are not commonplace or happening to the same extent across the province. As the population of persons with IDD grows, ages, and lives longer, it becomes increasingly important to understand their changing support needs and how to best meet them in the community.


How Administrators or Policy Makers Could use the Findings
• Adopt the international consensus statement on how to best support adults with IDD who are frail in the community.
• Use the resources that have been developed to promote awareness of frailty and support its use in developing care/support plans.
• Use the resources that have been developed to promote and facilitate intersectoral collaboration between health care and developmental services providers.
Key Findings for Researchers
Older adults with intellectual and developmental disabilities living with frailty in the community have complex support needs
• The principles and recommendations in the international consensus statement on how to best support adults with IDD who are frail are applicable to real-world integrated care planning.
• The key elements to successful intersectoral collaboration between health and developmental services include: knowing what you need, finding opportunities, building capacity, developing relationships, and planning for action.
• We developed a variety of resources to promote awareness of frailty and to support intersectoral collaboration; available in English and French at www.mapsresearch.ca
Why This Study was Needed
In the community, adults with IDD often receive support from both the health and developmental services sectors. While there are examples of inter-ministerial partnerships that successfully support Ontarians with IDD, these are not commonplace or happening to the same extent across the province. As the population of persons with IDD grows, ages, and lives longer, it becomes increasingly important to understand their changing support needs and how to best meet them in the community.


Study Summary
As adults with IDD who are frail often receive supports from both the developmental services and health care sectors, intersectoral collaboration is important. Through an in-depth case study of such a partnership, we learned that key elements to successful intersectoral collaboration include: knowing what you need, finding opportunities, building capacity, developing relationships, and planning for action. We also learned that the principles and recommendations in the recently released international consensus statement on how to best support adults with IDD who are frail are present and relevant to integrated care planning. Based on our results, we developed infographics and videos related to actions on frailty and intersectoral collaboration for professionals, and workbooks for use by family members and adults with IDD.
Potential Impact of Findings on Clinical Practice or Patient Care
• Development of more effective intersectoral collaborations and partnerships in the context of frailty among adults with IDD;
• Evidence-based, consistent, and multidisciplinary approach to guide planning and action to support adults with IDD in the community who are frail; and
• Potential for better outcomes (over the short and longer terms) from use of evidence-based approaches (in terms of frailty status, and quality of collaborative efforts).
Remaining Knowledge/Research Gaps
• There is a need to evaluate the impact of using resources on the development of successful intersectoral collaborations and outcomes.
• Future work should examine differences in actions and documentation related to consensus statement principles/recommendations based on frailty status (i.e., pre-frail vs. frail) in a larger sample of older adults with IDD who are frail.
CFN Webinar (November 19, 2019): Promoting intersectoral collaboration to support adults with IDD who are frail in the community