Many recent changes in Ontario warrant a study of those seeking developmental services in the province: who they are, what they seek, when and why they request services, and how individuals and families cope while they wait for services. As families play a critical role in supporting adults with intellectual and developmental disabilities, it is important to know more about their needs, and how they cope when their needs are unmet.

This project aims to:

1. Demonstrate how the information collected by Developmental Services Ontario can be used to describe the profiles of families seeking adult developmental services;
2. Identify individual, parent and family variables that influence the decision to seek different services;
3. Determine how to use parent reports to formulate indicators of social inclusion, choice and independence; and
4. Identify indicators of parent experiences that could/should be integrated in system monitoring.

Existing information and data collection systems related to developmental service use will be reviewed to identify current and future capacity for ongoing monitoring. Scoping and synthesis reviews of the literature will be undertaken to identify potential indicators of system effectiveness that could be provided through surveys of families and to inform the develop of a protocol for a survey of families seeking adult developmental services. The Parents Seeking Services Survey will attempt to engage as many families as possible, with some from each region in the province. Finally, through a series of consultations, the team will identify indicators of best and promising approaches to supporting families as they apply and wait for needed services.

Yona Lunsky, Investigator & Project Co-lead, Centre for Addiction and Mental Health

Hélène Ouellette-Kuntz, Investigator & Project Co-lead, Queen’s University

Jonathan Weiss, Co-investigator, York University

Patricia Minnes, Collaborator, Queen’s University

Developmental Services Ontario (DSO) agencies

This project will contribute to a better understanding of who is seeking services, how best to capture this information on an on-going basis, and how to engage families in research and/or system monitoring related to their experiences. The success of this project will be dependent on the engagement of key service providers and a representative sample of families. The findings can then be used to recommend quality indicators related to monitoring developmental service use and need as well as supports provided to families.