'They don't think I can do it': Experiences of self-advocates, employment specialists, and employers on employment of adults with intellectual disability.

BACKGROUND: A multi-phase Canadian study was conducted as part of a large-scale community and academic research partnership focused on understanding and improving the employment experiences of people with intellectual disabilities. METHOD: This multi-method study utilized a sequential approach, using findings from qualitative interviews (n = 28) to inform an online survey (n = 149). Participants were invited to share their experiences with paid employment or with persons with intellectual disabilities. RESULTS: Thematic analysis of data across interview and survey findings resulted in six themes: (1) assumptions and attitudes, (2) knowledge and awareness, (3) accessibility of processes, (4) use of accommodations, (5) workplace relationships, and (6) supports and resources. CONCLUSIONS: A holistic and systemic approach has the potential to improve inclusive employment experiences of people with intellectual disabilities. Action is needed mainly at the policy and employer level to reduce barriers and improve on facilitating measures reinforced by the themes shared in this study.

Transition to adulthood: prospective content in joint parent-youth conversations for young people with intellectual or developmental disabilities (IDD).

Problem and Objective: Transition to adulthood for young people with (IDD) is challenging for both youth and parents. Prospection, an important human adaptive tool and critical for independent living, involves constructing, encoding, and remembering the future. It may be jointly enacted between parents and young people as they discuss the future. This study identified and described evidence of prospective content in parent-youth conversations about the transition to adulthood. Method: This study involved the content analysis is of eight parent-youth conversations about this transition. Two mother-daughter, three father-daughter, and three mother-son dyads, representing a range of IDD diagnoses, provided 790 min of joint conversations and reflection on them. These conversations were examined for the following characteristics of prospection: simulation, reasoning about counterfactuals, constructing multiple possible futures, and episodic memory of the past. Findings: Among the four characteristics, simulation and episodic memory of the past were used most frequently and reasoning about counterfactuals the least. Giving advice and scaffolding were additional strategies that emerged from the data. Conclusion: Identifying how prospection may be fostered in joint parent-youth conversations provides a step toward future research.

COVID-19 IDD: Findings from a global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare.  Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff.  Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

COVID-19 IDD: A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.

Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

Disability, vulnerability and assisted death: commentary on Tuffrey-Wijne, Curfs, Finlay and Hollins.

This paper builds on the work of Tuffrey-Wijne et al. and explores the issue of vulnerability and persons with disabilities in relation to Euthnasia and Assisted Dying (EAS). The commentary draws on both the literature and on case examples from Canada. Specifically, it considers the issue of EAS as an alternative to, or substituted for, appropriate disability supports. Secondly, it considers the issue of the devaluation of disabled lives in general and within health care practice and ethics. It concludes that current safeguards are inadequate and that as EAS regimes become more permissive the risk to disabled persons will increase.

Transition to Adulthood as a Joint Parent-Youth Project for Young Persons With Intellectual and Developmental Disabilities.

Eight dyads ( N = 16) residing in Western Canada participated in this investigation of how young adults with intellectual and developmental disabilities (IDD) and their parents jointly construct, articulate, and act on goals pertinent to the young adults' transition to adulthood. Using the action-project method to collect and analyze conversations and video recall data, cases were grouped representing the ways goal-directed projects brought relationship ( n = 4), planning ( n = 3) or both ( n = 1) to the foreground as joint projects. Resources internal to the dyad such as emotional resources, and external to the dyad, facilitated formulation and pursuit of projects. Lack of external supports and limited parental knowledge about IDD hindered joint project formulation.

The transition to adulthood of young adults with IDD: Parents' joint projects.

INTRODUCTION: Parents have found the transition to adulthood for their sons or daughters with intellectual and/or developmental disabilities (IDD) particularly challenging. The literature has not examined how parents work together and with others in face of this transition nor has it highlighted parental goals in this process. This study used a perspective based on joint, goal-direct action to describe the projects that Canadian parents engaged in together and with others relative to this transition. METHODS: Using the qualitative action-project method, joint projects between parents and with others were identified from their conversations and followed for 6 months. FINDINGS: Three groups of projects were described: equipping the young adult for adult life, connecting for personal support and managing day-to-day while planning for the future. CONCLUSIONS: Parents act together and with others relative to the transition to adulthood of their young adult children with IDD. These projects are complex and differ in goals, steps, resources and emotional regulation and motivation.

Getting it "right": how collaborative relationships between people with disabilities and professionals can lead to the acquisition of needed assistive technology.

PURPOSE: The purpose of this study was to examine the impact of a consumer-led equipment and device program [Equipment and Assistive Technology Initiative (EATI) in British Columbia, Canada] from the perspective of program participants. The importance of collaborative assessments for obtaining the right assistive technology (AT) for meeting an individual's needs is discussed in light of the program's participant-centered "Participation Model", or philosophy by which the program is structured. METHOD: A cross-sectional survey with participants and semi-structured interviews were conducted with participants (≥ 18 years) who held a range of disabilities. The survey asked participants to rank their AT and to identify the method by which they obtained the technology [by self, prescribed by a health professional or collaborative (self and professional)]. Interviews addressed participants' opinions about obtaining and using AT. RESULTS: In total, 357 people responded to the survey (17% response rate) and 16 people participated in the interviews. The highest ranking AT was assigned to devices assessed via a collaborative method (self = 31%, practitioner = 26%, collaborative = 43%; χ(2) (16,180) = 39.604, p < 0.001). CONCLUSIONS: Shared decision-making between health professionals and people with disabilities within the assessment process for assistive technology leads to what participants perceive as the right AT. IMPLICATIONS FOR REHABILITATION: Collaborative decision-making can lead to the selection of assistive technology that is considered needed and right for the individual. Person-centered philosophy associated with assistive technology assessment is contributing to attaining "the right" AT.

Empowerment and the architecture of rights based social policy.

This article considers what the notions of empowerment, rights and citizenship imply in the way of structures and policies. It argues that a coherent model is emerging with recognizable elements. The article begins with a brief discussion of some background and theoretical questions. It then examines four elements: support for people to articulate their claims; support for people to identify, obtain and manage supports necessary to actualize their claims; providing control over resources; and governance. Examples will be drawn primarily from the UK and British Columbia, Canada to illustrate the elements. The article then looks at some of the issues related to successful implementation of a rights or empowerment based model of policy and structures for supporting people labelled as having a learning disability.