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Disconnected expectations: staff, family, and supported employee perspectives about retirement
- Authors:
- BIGBY Christine, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(3), September 2011, pp.167-174.
- Publisher:
- Taylor and Francis
This paper reports the first stage of a study that aims to understand how older people with intellectual disabilities who retire from supported employment can be supported to participate in mainstream community organisations. In particular, it explores the perceptions and expectations about activities and participation held by older supported employees, family members, staff in disability services, and participants in mainstream community organisations for older people. Six focus groups to discuss retirement were held comprising 5 distinct participant groups: 7 staff from disability accommodation; 7 staff from employment services; 4 members of mainstream activity programmes for older people; 5 family members; and 2 groups of 6 supported employees. The findings showed that the participants perceived retirement as a risk to the well-being and participation of employees. They were pessimistic about the availability of necessary support in retirement. The need for additional resources and skills was identified. However, the utility of inclusion strategies was not recognised, and continued segregation through specialist programmes or adaptation of existing employment programmes was the most commonly suggested retirement option by staff and family members. The article concludes that the perceptions of the participants does not reflect the current policy imperatives of social participation.
Avoiding institutional outcomes for older adults living with disability: the use of community-based aged care supports
- Authors:
- ELLISON Caroline, WHITE Amy, CHAPMAN Libby
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(3), September 2011, pp.175-183.
- Publisher:
- Taylor and Francis
Most people, regardless of ability or impairment, want to remain independent and living in their own home as they age. This study aimed to establish if accessing community-based aged care supports was perceived as assisting individuals ageing with a disability to remain living in their own homes and to avoid more institutional models of service. Sixty individuals aged 50 years and over with an intellectual, physical or neurological disability were interviewed to determine their perceptions in relation to ageing and the supports needed to remain living in the community. In addition, 26 staff and 6 family members were interviewed. The findings indicated that the participants receiving community-based aged care supports reported benefits including opportunities to develop relationships, maintain daily living skills, and participate in community activities. However, due to a lack of confidence in the availability of access to mainstream community-based aged care services, many participants felt vulnerable or unsure about their future and ability to remain living in their own home. Several participants commented that this meant that an undesired early relocation into residential aged care or congregate disability services appeared inevitable.
Quality outcomes in group home dementia care for adults with intellectual disabilities
- Author:
- JANICKI M.P.
- Journal article citation:
- Journal of Intellectual Disability Research, 55(8), August 2011, pp.763-776.
- Publisher:
- Wiley
As more individuals with intellectual disabilities are surviving to an older age, the number who present with cognitive decline and are diagnosed with dementia can be expected to grow. As new needs become apparent residential support agencies may need to adapt their current methods of care to meet different applicable standards. This is particularly true for small group homes. Relevant policy and practice organisational guidelines and the applied research literature addressing components of care and service provision were reviewed with the aim of identifying quality care factors. The intention being to propose components of quality outcomes for specialist dementia care that are universally applicable and could serve as a framework for adapting existing residential environments and make them ‘dementia-capable’. It is concluded that efforts to evaluate dementia-related care provision with respect to quality need to consider quality of care provision components such as: clinically relevant early and periodic assessment; functional modifications in the living setting; constructive staff education and functionality for stage-adapted care; and flexible long-term services provision that recognises and plans for progression of decline and loss of function.
Ageing and health status in adults with intellectual disabilities: results of the European Pomona II study
- Authors:
- HAVEMAN Meindert, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(1), March 2011, pp.49-60.
- Publisher:
- Taylor and Francis
POMONA II was a European Commission funded public health project collecting information from 14 countries using a set of key health indicators specifically relevant for people with intellectual disabilities. This research focused on age-specific differences relating to environmental and lifestyle factors and the 17 medical conditions measured by the POMONA Checklist of Health Indicators. The article describes how information was collected using the POMONA Health Interview Survey and Evaluation Form from a sample of 1,253 participants in Austria, Belgium, Finland, France, Germany, Ireland, Italy, Lithuania, the Netherlands, Norway, Romania, Slovenia, Spain, and the United Kingdom. It then presents the results of the analysis, with tables showing characteristics of people with intellectual disabilities in the study, frequency of social contacts with relatives or friends according to age, lifestyle risk factors in people with intellectual disabilities according to age, and general and age-specific prevalence rates of health problems. The authors discuss how healthy older adults with intellectual disabilities are with regard to lifestyle factors, and whether there are health disparities between older adults with and without intellectual disabilities. They note that some evidence of health disparities was found for older people with intellectual disabilities, particularly in terms of under diagnosed or inadequately managed preventable health conditions.
Supporting people with intellectual disabilities who challenge or who are ageing: a rapid review of evidence
- Authors:
- SLEVIN Eamonn, et al
- Publisher:
- University of Ulster
- Publication year:
- 2011
- Pagination:
- 204p., bibliog.
- Place of publication:
- Belfast
Based on a conservative estimate, 2228 people with an intellectual disability (ID) in Northern Ireland, 958 children and 1270 adults, are likely to have behaviours that challenge others. These people require significant input from services to maintain them in their own home. This report provides a review of literature in order to inform practice with 2 groups of people with IDs. The aim is to identify the supports that are required for these client populations to enable them to live in their own homes as far as is possible and to live dignified meaningful lives. Firstly, the review considers the evidence in relation to people with an ID who challenge and may have comorbid mental health problems. For this group the review considers: supporting living; day opportunities; family support; and other interventions or services that have an evidence-base applicable across settings. Secondly, the review looks at the evidence in relation to people with ID who are reaching old age and in many cases are being cared for by older caregiving family members. This is a new area of research, since more people with ID are now living into old age. For this group the review focuses on: health; aging in place; succession planning; formal service provision; and use of mainstream services. Recommendations are made in relation to practice, education and future research focused on clients, family caregivers and formal service providers.
The housing and support needs of people with an intellectual disability into older age
- Authors:
- SHAW K., CARTWRIGHT C., CRAIG J.
- Journal article citation:
- Journal of Intellectual Disability Research, 55(9), September 2011, pp.895-903.
- Publisher:
- Wiley
The population of those with intellectual disabilities (IDs) is ageing. Many live at home with family members who are their carers but who are becoming older themselves and less able to provide care. The authors suggest that many people with ID do not have access to the choice and flexibility of housing that they desire and that their, and their carers’, preferences are poorly characterised in the literature. Focus groups and individual interviews were conducted with 15 people with IDs who work in supported employment in New South Wales and with 10 family members who care for adults with IDs. The major themes emerging were: living arrangements; housing preferences; ageing in place; and transition from informal to formal housing and support services. The authors conclude that the participants with an ID and their carers want housing and support to enable people with an ID to maintain and enhance their social networks with their peers as they grow older and need transition to formal housing and support services, and to be able to ‘age in place’. A preference was expressed for models of housing that provide the opportunity for people with an ID to live in close proximity to their peers and in large groups in the community rather than in small, dispersed community housing.
Planning and decision making about the future care of older group home residents and transition to residential aged care
- Authors:
- BIGBY C., BOWERS B., WEBBER R.
- Journal article citation:
- Journal of Intellectual Disability Research, 55(8), August 2011, pp.777-789.
- Publisher:
- Wiley
Significant increases in life expectancy have led to a growing number of ageing people with intellectual disability. Planning for future care after the death of parental caregivers and adapting support systems to achieve the best possible quality of life for ageing people with intellectual disability are becoming increasingly important. This study examined perceptions held by family members, group home staff and organisational managers about the future of older residents and the decisions about moving to residential aged care. Three sets of interviews over a period of 18 months were conducted with a family member, house supervisor and the programme manager for each of seventeen older group home residents in Victoria, Australia. For the eight people for whom it was decided a move was necessary, and the six who eventually moved, questions focussed on the decision-making process. While plans for lifelong accommodation in a group home proved unfounded, key person succession plans were effective. However, decisions to move on to residential aged care were often made in haste and seen as a fait accompli by involved family members. The authors conclude that although family members take seriously their mandate to oversee well-being of their older relative, they have little knowledge about their rights or avenues to safeguard untimely or inappropriate decisions being made by professionals.