The Power of Population Health Data on Aging and Intellectual and Developmental Disabilities: Reactions of Knowledge Users

Recent work in Ontario (Canada) revealed that adults with intellectual and developmental disabilities experience higher rates of frailty and use of aging care services at earlier ages than the general population, and that the subset aged 65+ years is increasing. This paper describes the reaction of knowledge users to study findings and implications for policy and practice. A knowledge transfer webinar was held with nearly 200 people representing different regions of the province, participant types (family members, service providers, decision makers, researchers), and sectors (health and developmental services). Most participants viewed health and developmental services systems as not ready for the aging population with intellectual and developmental disabilities for two main reasons: insufficient cross-sector expertise and inadequate funding. The need for healthcare, challenged informal supports, lack of services, and the desire for independence were thought to drive higher use of home care among younger adults, while inadequacies within the developmental services sector, challenged informal supports, medical and care needs, lack of community supports, and the need for coordinated cross-sector services were noted as contributing to admissions to long-term care. There is a lack of evidence-based information on aging and intellectual and developmental disabilities. Ongoing access to quality, population-level data on the number and needs of persons with intellectual and developmental disabilities is needed to improve policies and practices to support aging in the community. Persons working in health and developmental services had a shared understanding of the need for system reform, better collaboration, and integration of resources. Both sectors also viewed admission to long-term care as particularly problematic. The province-wide webinar brought together persons with various levels of responsibility from different sectors. Future exchanges should focus on identifying and promoting best practices.