A community living experience: Views of people with intellectual disability with extensive support needs, families, and professionals.

BACKGROUND: Despite the benefits of community living for people with intellectual disabilities (ID) and extensive support needs, they remain highly institutionalized. AIMS: To qualitatively analyze the perceptions of people with ID, including those with extensive support needs, professionals, and family members six months after the implementation of 11 community homes for 47 people in different regions of Spain METHODS: Thematic analysis of 77 individual interviews conducted with 13 people with ID, 30 professionals and 34 family members was performed using Nvivo12. RESULTS: Seven themes were found: (1) "the room as I like it", (2) "sometimes I don't obey", (3) "here I do a bit of everything", (4) "lots of people love me here", (5) "all thanks to them, who have helped me" (6) "I miss my mom", and (7) "I'm happy here". IMPLICATIONS: Transitioning into the community has shown a clear positive change in emotional well-being, opportunities to participate in activities or exercise control over one's life. Nevertheless, certain restrictions were still present in people's lives, which significantly limit their right to independent living. While many of these restrictions may disappear, professional practices typical of a medical model can be recreated in services located in the community.

Social-Emotional Difficulties in Irish Children Aged Five and Nine Years: A National, Longitudinal Study.

A small proportion of children experience social-emotional difficulties from early childhood onwards. Longitudinal studies with nationally representative samples are needed to identify the prevalence and the characteristics of children and families persistently experiencing these difficulties. Secondary analysis of data collected on over 7500 Irish children and with the Strengths and Difficulties Questionnaire as the primary indicator, found that 6% of children when they were five year olds and 8% when they were nine-years, had above threshold scores that warranted further investigation. A smaller proportion-2.9% had elevated scores at both ages. Logistic regression analyses found that children with one or more developmental disabilities were up to six times more likely to have sustained difficulties. There were also significant associations with the lower education attainment of primary caregivers and the socio-economic deprivation of families. Primary caregivers and teachers reported higher conflict in their relationships with these children. Although the number of Irish children presenting with continuing social-emotional difficulties is small, they can present an ongoing and future societal cost in terms of the impact on family relations and demands placed on educational, health and social services. This study identified the children and families who are at greatest risk and for whom targeted early intervention services could be provided.

Family experiences of personalised accommodation and support for people with intellectual disability.

Previous studies suggest that family members of people with intellectual disabilities prefer them to move to supervised living arrangements such as group homes. In Ireland, personalised arrangements are emerging, but families have had little exposure to this option. In this qualitative study, we explored the perspectives of family members following their relative's move to personalised support options, mostly from group homes. Semi-structured interviews were conducted in 2011 with a family member of 17 people who had previously moved, with follow-up interviews held with 12 of them up to 18 months later. Thematic analysis on interview transcripts was conducted by three researchers. The family members spoke favourably of the new arrangements. A core theme of enabled independence emerged with subthemes of greater self-reliance in personal care, increased confidence, more social inclusion and gains for relatives. Reservations focussed on the need for more support hours, managing risk and loneliness.

Changes in the self-rated well-being of people who move from congregated settings to personalized arrangements and group home placements.

A natural experiment contrasted the self-rated well-being of people with intellectual disabilities ( n = 75) and those with enduring mental health problems ( n = 44) after they moved to new accommodation and support options, while others remained in congregated settings or living in the family home. Most support staff also provided well-being ratings. In personalized arrangements, personal well-being was significantly higher than in congregated settings; particularly for people with intellectual disability who had higher support needs compared to people with mental health problems. Moving to a group home also brought some improvement in the well-being ratings of people with intellectual disability but only for those with higher support needs. Such moves seemed to lead to a decline in well-being for those with mental health problems. There were marked discrepancies between ratings given by the person with those of staff. The well-being measure shows promise for use in further comparative and longitudinal studies.