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This paper considers the ways that publicly funded developmental services for adults with developmental disabilities in southern Ontario are limited in how they support clients. This paper is informed by field research conducted in the summer of 2019, which was composed of semi-structured interviews, focus groups, and a policy review. Informed by parent advocates who are the main caregivers of their adult children labelled with intellectual and developmental disabilities, this paper claims that the administrative processes of the Ontario ministry that manages and funds adult disability services relate to broader exclusionary patterns among adults with developmental disabilities. I explore this claim by reviewing how common ableist assumptions of people with developmental disabilities are ingrained in the policies and administrative processes of these services. I contribute to ongoing discussions among Critical Disability Scholars of the ways that disability as a social category can be articulated outside of ableist assumptions. Informed by parent caregiver perspectives, this article outlines how the limitations of provincially funded disability services in Ontario, Canada cause significant challenge in the lives of those labelled with intellectual and developmental disabilities. One possible explanation for these limitations is that there is a disconnect between how the provincial government classifies who should receive immediate services and how many services, versus the actual need of those labelled with intellectual and developmental disabilities. The criteria for high supports, such as monthly funding, placement into a living facility, and the provincial assessment for determining a person's 'adaptive functioning' are rooted in problematic assumptions made of people labelled with intellectual and developmental disabilities. [ABSTRACT FROM AUTHOR]

This paper analyses the impact of disability on the social identities of siblings of young people and adults with cognitive disabilities. The main aim is to empirically support the concept of 'disability by association', which refers to the attribution of an associative identity due to the presence of a disabled member in the family. Evidence is drawn from a qualitative study, made up of 32 in-depth interviews and two focus groups with siblings without disabilities. The results confirmed the impact of interactive effects on the lives and behaviours of the interviewees. The internalisation of the oppression experienced by siblings, even in the absence of actual negative incidents, limits their social life experience and identity construction. Although the siblings develop non-medical representations of disability and impairment, this conceptual repertoire is not strong enough to challenge devalued images of cognitive disability. Points of interest: Siblings' points of view are underdeveloped, while most studies focused on parents' perspectives. The research found that siblings have different views on disability and impairment than parents. Siblings may experience stigma and exclusion due to their brothers and sisters' disability. The research recommended that siblings' difficulties and needs be taken into account when talking about the experience of disability within families. [ABSTRACT FROM AUTHOR]

Community housing services adopt care models such as rehabilitation, recovery-oriented care and person-centered planning to improve the quality of life of service users with an intellectual or psychiatric disability. However, the way these care models are implemented and practiced can negatively impact service users' experience with the service as their complex needs go unmet. In this paper, we conceptualize these experiences through developing the counternarrative of burdens of support. For this we draw on burden of treatment theory. We conducted ethnographic fieldwork in a community service organization in the Netherlands. This included participant observation (84 h), interviews with service users (n = 20), experts-by-experience (n = 8), family members (n = 10) and photovoice workshops. Our analysis identifies four burdens of support: burden of self-determination; re-identification; responsibilisation and re-placement. The results show that burden of support is very much a relational concept: through their support, professionals can aggravate or alleviate burden. People with intellectual or psychiatric disabilities often receive support with living in the community. Good support fits people's needs (e.g. person-centered planning), builds on people's strengths and contributes to recovery and community participation. Even when support is practiced or organized with such aims, service users can have negative experiences. In this research we call this: 'burden of support'. Examples of burden of support identified include: Clients' needs and wishes are sometimes not sufficiently attended too when working with a personal care plan. Too much responsibility is sometimes shifted to clients, which results in feelings of failing or abandonment. The focus on strengths and recovery sometimes leaves too little room for clients to voice support needs. Having to move to a different home or neighborhood as part of becoming more independent can result in many difficulties including loneliness. The research recommended that those who improve services should also alleviate these burdens. [ABSTRACT FROM AUTHOR]