Persons with intellectual and developmental disabilities make up 1 to 3% of Canadians. They are living longer; by 2021, it is projected that the number of seniors (65 years +) with intellectual and developmental disabilities in Ontario will almost double from 6,000 to 10,000. They are higher users of health care including aging care. In Ontario, adults (18 to 64 years old) with intellectual and developmental disabilities were almost twice as likely to visit the emergency department and to have been hospitalized at least once in a year than adults without these disabilities. They are twice as likely to use home care and they are admitted to long-term care approximately 25 years earlier than those without intellectual and developmental.
Persons with intellectual and developmental disabilities and their advocates have fought long to bring an end of institutionalization. The struggle to close large institutions historically established to provide segregated care and to exclude them continues in some provinces in Canada. There is a growing concern that hospitalizations and admissions to long-term care should be avoided as they are seen as another form of institutionalization of this marginalized group. Early identification of frailty and its incorporation in care planning offers promise in both preventing re-institutionalization and promoting appropriate use of long-term care.
Our overall goal is 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 will be informed by a critical review of the available literature, and will be based on clinical information available in the suite of interRAI instruments (which are mandated for use in multiple sectors in Ontario, Canada, and worldwide). Recommendations for implementation of the frailty tool in home care settings will be based on learnings from key informant interviews on the use of frailty measures in the population.
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