Examples of individual supported living for adults with intellectual disability.

BACKGROUND: This article provides a qualitative account of four models of support for adults with intellectual disability in individual supported living (ISL) arrangements. MATERIALS AND METHODS: Completion of the first 50 evaluations of 150 arrangements for the third phase of the ISL project provided the examples. RESULTS: Four approaches are described: living alone, co-residency, relationship and host family. Within each type, wide variations occur particularly based on security of tenure, formal and informal support and management variations. CONCLUSION: Fifty evaluations so far illustrated a wide range of approaches to ISL, providing evidence of the critical importance of the formal and informal support environment and reinforcing the contention that ISL is appropriate for people with high support needs.

Development of core sets for deafblindness using the International Classification of Functioning, Disability, and Health: the perspectives of individuals with lived experience.

BACKGROUND: The needs of people with deafblindness remain poorly understood and addressed globally. This study is part of a larger body of work to develop Core Sets for deafblindness using the International Classification of Functioning, Disability, and Health (ICF). AIM: To determine the perspectives on functioning of individuals with lived experience of deafblindness as they relate to the ICF. DESIGN: Cross-sectional interview study. SETTING: Global, representing all six regions of the World Health Organization. POPULATION: A diverse cohort of 72 individuals living with deafblindness or as close family members, ranging across the spectrum of severity. METHODS: Qualitative interviews and focus groups were used to explore six open-ended questions about perceived barriers and facilitators to functioning of body functions and structures, activities and participation, and environmental and personal factors. Data were synthesized using content analysis, and the resulting topics were linked to the ICF codes using established linking methodology prescribed by the World Health Organization's ICF Research Branch. Descriptive statistics summarized all demographic data. RESULTS: The analyses of the transcripts uncovered 2534 meaning units, leading to the identification of 492 corresponding distinct codes from the ICF framework, and spanning across 93.33% of coding categories available. Sensory (b2) and Mental Functions (b1) emerged as the most frequent Body Functions (b) codes. Most categories referred to Activities & Participation, with Mobility (d4) being the most frequently mentioned topic. Services, Systems and Policies (e5) was the most frequently used Environmental factor. CONCLUSIONS: Over 93% of the ICF classification categories were accessed to code the data provided by participants, demonstrating the complexity of functioning with deafblindness. This study provides valuable information to shape policy and research by providing representation of lived experience towards the consensus conference for the comprehensive and abbreviated Core Sets for deafblindness. CLINICAL REHABILITATION IMPACT: The inclusion of lived experience provides a holistic understanding of the daily challenges faced by individuals living with deafblindness. By being part of this process, they have a voice in shaping the classification system that will be used to describe their experiences, fostering a sense of ownership and empowerment.

Assistive technology for people with deafblindness in Southern Africa: a Delphi study exploring dimensions of impact.

PURPOSE: Assistive technology (AT) is a highly effective intervention to address the capability gap for people living with deafblindness. The My AT Outcomes Framework (MyATOF) is a novel Australian framework founded upon AT process principles and outcomes research. It guides stakeholders to articulate AT use according to 6 dimensions. MyATOF was developed as a data collection and knowledge translation tool. The use case of AT by people with deafblindness in Southern Africa was investigated in this study to determine the applicability of MyATOF dimensions to (a) people with deafblindness and (b) low- and middle-income countries. MATERIALS AND METHODS: Two online surveys, using the Delphi methodology, were undertaken with key stakeholders including people with deafblindness, family members, researchers, service providers, educators and advocates. An expert panel of 17 completed Phase 1, with 14 completing Phase 2. The WHO 5 Ps AT systems thinking model was used in data analysis. RESULTS: Respondents affirmed the validity of the dimensions of MyATOF for people with deafblindness in four Southern African countries. In-country barriers and constraints were identified as significantly impacting the capacity of AT users with deafblindness, to realize positive outcomes. CONCLUSIONS: The MyATOF dimensions show promise in their use with persons with deafblindness in Southern Africa, though further research is needed.IMPLICATIONS FOR REHABILITATIONThe impact of assistive technology and related supports can be evaluated across a number of dimensions including human rights, costs incurred and saved, consumer experience, and service delivery satisfaction.These dimensions of impact resonate across the two continents investigated to date, with contextual factors being considered.Variables influencing access to assistive technology across contexts can be understood through the WHO GATE five P's systems thinking model.Few tools place data capture and outcomes measurement in the hands of assistive technology users, but indications are that this is of value to consumers.

Interacting with adults with congenital deafblindness: The experiences of disability support workers.

BACKGROUND: This study aimed to gain greater insight into the perspectives of staff on their interactions with adults with congenital deafblindness in light of the research literature reporting these interactions to be lacking in quality and quantity. METHOD: Data from interviews with 8 disability support workers were analysed using the approach described by Charmaz (2006). RESULTS: Three key themes emerged from the interview data, which support and elaborate on findings of previous studies. These were (1) the construction of client happiness, (2) the rationalisation of client disengagement, and (3) imperatives of the staff role. These findings elucidate the reasons for staff behaviour in their interactions with adults with congenital deafblindness. CONCLUSION: The findings suggest the need for staff policy and procedural documents to be explicit about the importance of social interaction between staff and clients.

Observing the behaviour and interactions of adults with congenital deafblindness living in community residences.

BACKGROUND: Adults with congenital deafblindness (CDB) have received little attention from researchers. In this study we examined the nature of interactions between adults with CDB and the staff who mediate their support, and investigated the reliability of an observation coding system, originally designed for observing adults with severe intellectual disability. METHOD: The behaviours of 9 adults with CDB, including their interactions with support staff from 2 community residences, were recorded and subsequently coded by 2 observers. RESULTS: Interrater reliability, measured using Cohen's k, was variable across the coding system. Adults with CDB were predominantly observed to be disengaged, with few observations of engagement according to the coding schedule's definition of engagement. Interactions between the residents and support staff were rare. CONCLUSION: The introduction of interventions designed for staff to promote resident engagement in social interaction is recommended.