Journal on Developmental Disabilities

Choice is now recognized as a fundamental right of persons with intellectual and developmental disabilities (IDD) in the United Nations Convention on the Rights of Persons with Disabilities. In Ontario, the Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act requires providers of services for adults with IDD to support them in making choices. However, efforts to implement services that promote choice have been limited by the lack of a practical understanding of choice. In this scoping review, the scientific literature on choice is contrasted to the lived experience of persons with IDD to both clarify the meaning of choice and identify what components of choice should be measured when evaluating IDD services. Through a review of the English-language literature published between January 1, 1991 and December 31, 2011, four components were identified as necessary for choice to occur: the availability of choice opportunities, the provision of choice options, an informed cognitive process and act of choosing, and a supportive environment. Feedback on these findings was sought from a range of stakeholders, including persons with IDD, family members, and representatives from service agencies that support persons with IDD. The results of these consultations are presented. Challenges with implementing the concept of choice at the service level is discussed.

Monitoring service performance related to social inclusion requires the ability to define and measure a sense of belonging. This paper aims to inform quality improvement monitoring in intellectual and developmental disabilities (IDD) services. Specifically, it provides information on how to monitor an important personal outcome, a sense of belonging. A literature review was conducted to examine existing measures of belonging and discuss their potential to monitor belonging in users of IDD services. A SUMMON search was performed to survey articles in the peer-reviewed scientific literature using the key search term -sense of belonging- between January 1, 1997 and July 17, 2011. Each measure of a sense of belonging was assessed within a framework for good performance indicators. Eighteen articles contained unique methods or tools for measuring a sense of belonging. To ensure appropriate and actionable information is collected, each indicator must be considered in relation to the purpose and programming provided by the organization, and which domains of belonging may be affected by the services offered. Further, it is recommended that a parsimonious set of questions that target relevant domains of a sense of belonging will provide enough information to evaluate a program or service, as well as identify areas for modification to improve outcomes.

Being productive and engaged in one;' community is an important means of achieving social inclusion. Full participation of adults with intellectual and developmental disabilities (IDD) in productivity roles requires that viable options be available for meaningful and satisfying participation in the full range of productivity roles. Training and supports to help them obtain and succeed in chosen roles should also be provided. This study examined training, transition, and productivity experiences of disability support recipients with IDD in the Greater Toronto, Northern, and Eastern regions of Ontario. The results of the survey portion of the study demonstrate regional disparities, and provide direction for quality improvement relative to service provision models.

Increasing proportions of adults with intellectual and developmental disabilities (IDD) live with family members, but families who request adult developmental services are often placed on lengthy waiting lists. To date, however, no research explores in depth the efforts of parents when attempting to obtain services for adult children with IDD, or how assumptions about what parents can and should do for their children might impact service acquisition processes. The current study asked: (1) What types of efforts do parents undertake as they attempt to obtain services for their adult child with IDD in Ontario?; (2) How do parents justify their engagement in these efforts?; and (3) How do these parental efforts relate to the likelihood that families will obtain services? Eight families seeking services in Ontario participated in in-depth interviews about their experiences with care and support. From interview transcripts, 13 narratives about families attempts to secure particular services were identified. Thematic analysis indicated that families participated in administrative, information gathering, relationship building, and advocacy efforts as they sought services. Results are discussed in terms of the importance of questioning assumptions that parents, especially mothers, can and should expend considerable time and effort to obtain services.

Background: Parents of individuals with intellectual and developmental disabilities (IDD) are increasingly called upon to provide supports well into their child's adult years. Research points to the complex relationship among service need, service use and stress experienced by families caring for individuals with IDD. Caregivers' view of how well they think they can provide for their child in the future is a strong predictor of service need. This paper examines the relationship between resilience in families at the time they made a new service request for their adult child with IDD and their perception of crisis six months later. Methods: Self-reported data from 154 parents were collected upon request for services and six months later. Results: Family resilience was associated with not approaching or being in crisis. Parents 54 years or younger and those who had a child over the age of 21 were less likely to approach or be in crisis. Conclusions: Resilience is an important construct to assess among parents requesting adult developmental services for their sons or daughters, and it can be quickly measured at the time of service request. Resilience is a good indicator for system improvement as it can help identify families who should receive services faster.

Background: Recent legislation in Ontario promotes the use of person-directed planning (PDP) as a service to help individuals with intellectual and developmental disabilities (IDD) identify goals and the supports and services needed to achieve them. This study sought to better understand the lived planning experience of planning team members, including persons with IDD, families, staff, and planners/facilitators. Methods: A total of 48 individuals from eight planning teams were interviewed. Qualitative analysis was guided through use of a proposed framework for PDP; coding was expanded as needed. Results: Teams discussed the importance and challenges associated with the person having a voice and making choices; teams including the right people, who have the right attitudes, and engage in the right actions; and plans that focus on the person, identify concrete actions and supports to assist in the achievement of goals, and result in changes in the person's life. Conclusions: Team members discussed issues in a way that both aligned with, and expanded on, the conceptual framework for PDP, thereby reinforcing its utility in assessing the quality of planning.

Based on surveys of direct support professionals in Ontario's developmental services sector, this paper examines the complex nature of worker stress. Previous research has tended to focus on organizational employment practices and challenging behaviours as negative sources of worker stress. More generally this follows the underlying assumptions in industrial psychology which connects negative stressors with negative work experiences. In this study, we find asymmetries in workplace emotional outcomes - positive motivations interacting with positive emotions are associated with higher rates of burnout. Specifically, we found that prosocial motivation was a significant moderating variable, which when interacted with positive affect or perceived organizational support, was associated with higher feelings of emotional exhaustion when controlling for other factors. Implications for the use of quality indicators on worker stress are discussed.

Services and supports for persons with intellectual and developmental disabilities (IDD) worldwide have transitioned - or currently are - towards a community-based approach that enhances social inclusion. This paper presents principles that could guide quality improvement monitoring in community services for adults with IDD. The principles were developed through a series of activities aiming to better understand relevant service outcomes, such as social inclusion and choice; consultations with various stakeholder groups including persons with IDD; and review of available data about the users of services and supports for Ontarians with IDD. The five guiding principles are: (1) activities are embedded within a continuous quality improvement cycle; (2) activities focus on personal outcomes that are important to persons with IDD; (3) activities capture the multidimensional nature of the outcomes being measured; (4) knowledge is developed from multiple perspectives; and (5) knowledge is meaningful, actionable, and informs policy and service improvements. The paper also presents a possible way forward in operationalizing a quality improvement monitoring system related to services for adults with IDD.