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Ageing and intellectual disability in Israel: a study to compare community residence with living at home
- Authors:
- LIFSHITZ Hefziba, MERRICK Joav
- Journal article citation:
- Health and Social Care in the Community, 11(4), July 2003, pp.364-371.
- Publisher:
- Wiley
Compares ageing phenomena in 29 people aged over 40 with intellectual disabilities living in community residences with 31 living with their families to compare health status between the 2 types of settings and between the study sample and the general Israeli population of the same age group, and investigate whether deterioration occurs among the participants in activities of daily living (ADLs), cognitive ability and leisure activity. Health problems had already appeared by 40 among the participants. The most frequent were visual impairment (33%), hearing impairments (20%), heart problems (20%) and dental problems (30%). The community-based group displayed more medical problems than people living at home, whereas individuals living at home had more dental problems. Participants' functioning in ADL areas was high, with no evident decline reported during the previous 5 years. Concerning leisure time, a decline in functioning in both residential groups was observed, and, interestingly, scores for social life and leisure activities were better for the community-based group. There is a need for better dental service provision for people with intellectual disabilities living at home. The data provided can serve as a preliminary base for the development of geriatric services for older adults with intellectual disabilities in the community and also for further comparison with peers in the general population.
Impediments to community-based care for people ageing with intellectual disability in rural New South Wales
- Authors:
- WARK Stuart, HUSSAIN Rafat, EDWARDS Helen
- Journal article citation:
- Health and Social Care in the Community, 22(6), 2014, pp.623-633.
- Publisher:
- Wiley
The emerging phenomenon of ageing with an intellectual disability has become subject to an increasing research focus in recent years. However, there remains little knowledge regarding the specific impediments that community workers face in supporting this cohort. The aims of the current study were to identify the major factors that, direct care staff believe, have most impact upon individuals ageing with an intellectual disability in the community. A three-round Delphi project was conducted across rural areas of New South Wales in Australia with 31 disability support workers to gain their perspectives on the main impediments facing a person ageing with intellectual disability. The 2010 study identified that the issue of ageing with an intellectual disability was presenting significant problems for community-based service delivery to this group of people. The panel identified 25 different impediments to the provision of support. A thematic analysis of the items indicated three main themes of ‘funding’, ‘training’ and ‘access to services’. By identifying these impediments to supporting people ageing with an intellectual disability in the community, both services and government funding bodies have the ability to plan to overcome both current and future problem areas. This identification of impediments may facilitate individuals to receive more appropriate assistance, which in turn may lead to an improved quality of life and maintenance of a community-based placement rather than premature admission to the congregate-care system. This study is particularly timely, given that Australia is in the midst of implementing a National Disability Insurance Scheme, and is an opportunity for all levels of government to agree on the mechanisms to appropriately assist individuals with an intellectual disability to continue to be supported in the community as they age. (Publisher abstract)
Commentary on “Growing older together: ageing and people with learning disabilities and their family carers”
- Author:
- THOMPSON David
- Journal article citation:
- Tizard Learning Disability Review, 18(3), 2013, pp.120-123.
- Publisher:
- Emerald
This commentary aims to support Carol Walker and Cally Ward's paper by directing readers to work which could guide their practice with older people with learning disabilities and ageing family carers. It reviews selected initiatives to support older people with learning disabilities and their family carers over the past decade. Examples from the author's personal contacts are also used to illustrate the discussion. (Edited publisher abstract)
Growing older together: ageing and people with learning disabilities and their family carers
- Authors:
- WALKER Carol, WARD Cally
- Journal article citation:
- Tizard Learning Disability Review, 18(3), 2013, pp.112-119.
- Publisher:
- Emerald
This article explores the new challenge posed by the first generations of people with learning disabilities who are now living into older age in significant numbers. Most are living with family carers, who are themselves ageing. This represents a major transition in people's lives and one to which services must respond if a normal life event is not to be turned into a crisis. The article draws on the work of the authors for over a decade in this field. It examines the implications for both the older people themselves and for the ageing family carers with whom the majority live and of current government policy in social care and welfare benefits for this very vulnerable group. Learning disabled people are likely to experience the age discrimination common in much older people provision and practice and the caring relationship is undermined in the short and long term. Evidence on the extension of personalisation indicates that it presents very considerable challenges for this group of families. More information is needed on this growing population. More preventative support is needed to sustain the caring relationship while the family is living together, to support families to plan for the future, and to provide support when the caring relationship breaks down. (Edited publisher abstract)
End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services
- Authors:
- WIESE Michele, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(6), November 2012, pp.571-583.
- Publisher:
- Wiley
People with disability, including intellectual disability, are living longer. With this increased life expectancy, people with intellectual disability are outliving their parents, resulting in increased need for community living services. The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services. A total of 33 staff were recruited from 3 agencies in Australia that provide community group home accommodation. The participants were required to have either experienced a death of a client or be supporting a client near the end-of-life. Focus groups were conducted with 25 of the participants and individual interviews were held with 20 of the participants. Analysis of the findings revealed 5 key issues: knowledge of dying; ethical values; the where of caring; the how of caring; and post-death caring. These issues occurred in relationship with ‘partners’, including the dying person, other clients, fellow staff, family, external health services and the coroner. The article concludes that end-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care.
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.
Using healthcare services: perspectives of community‐dwelling aging adults with intellectual disabilities and family members
- Authors:
- BAUMBUSCH Jennifer, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 16(1), 2019, pp.4-12.
- Publisher:
- Wiley
The aging of adults with Intellectual Disability (ID) in the community resulting from deinstitutionalization signals a need for change in healthcare policy and services. This population is growing older at rates similar to the rest of the population, and individuals with ID often have multiple chronic illnesses and may experience young‐onset dementia, increasing their need to use healthcare services. However, it is widely recognized that currently healthcare services are ill‐prepared to meet the unique needs of this population as they age in their communities. The purpose of this study was to explore this issue from the perspectives of aging individuals with ID and family members (FMs). This study employed qualitative description as the method of inquiry and took place in British Columbia, Canada. Adults with ID age 40 years and older (N = 21) and FMs (N = 26) participated. Data were collected through focus groups and semistructured interviews. Thematic data analysis was conducted to generate the main study findings. Two overarching themes were identified. First, “the organization and culture of healthcare services in the community.” This theme included issues such as age restrictions on health services, navigating health services, the culture of appointment‐making, and implications of living in rural settings, all of which influenced how individuals used healthcare services. Second, “interactions with healthcare providers” illustrated ways in which providers contribute to healthcare experiences. Many factors, both organizational and interpersonal, shape the experiences of aging individuals with ID using healthcare services in their communities. There continues to be a policy and service gap that can create unnecessary and avoidable difficulties in using healthcare services. Policies, service delivery, and education of healthcare providers need to be revisited in light of the unique needs of this population aging in the community in order to ensure healthcare is accessible. (Edited publisher abstract)
The power of population health data on aging and intellectual and developmental disabilities: reactions of knowledge users
- Authors:
- MARTIN Lynn, OUELLETTE-KUNTZ Helene, McKENZIE Katherine
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 14(4), 2017, p.268–278.
- Publisher:
- Wiley
Recent work in Ontario (Canada) revealed that adults with intellectual and developmental disabilities experience higher rates of frailty and use of ageing care services at earlier ages than the general population, and that the subset aged 65+ years is increasing. This paper describes the reaction of knowledge users to study findings and implications for policy and practice. A knowledge transfer webinar was held with nearly 200 people representing different regions of the province, participant types (family members, service providers, decision makers, researchers), and sectors (health and developmental services). Most participants viewed health and developmental services systems as not ready for the ageing population with intellectual and developmental disabilities for two main reasons: insufficient cross-sector expertise and inadequate funding. The need for healthcare, challenged informal supports, lack of services, and the desire for independence were thought to drive higher use of home care among younger adults, while inadequacies within the developmental services sector, challenged informal supports, medical and care needs, lack of community supports, and the need for coordinated cross-sector services were noted as contributing to admissions to long-term care. There is a lack of evidence-based information on ageing and intellectual and developmental disabilities. Ongoing access to quality, population-level data on the number and needs of persons with intellectual and developmental disabilities is needed to improve policies and practices to support ageing in the community. Persons working in health and developmental services had a shared understanding of the need for system reform, better collaboration, and integration of resources. Both sectors also viewed admission to long-term care as particularly problematic. The province-wide webinar brought together persons with various levels of responsibility from different sectors. Future exchanges should focus on identifying and promoting best practices. (Edited publisher abstract)
Care in the community: home care use among adults with intellectual and developmental disabilities over time
- Authors:
- MARTIN Lynn, OUELLET-KUNTZ Helene, McKENZIE Katherine
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 14(3), 2017, pp.251-254.
- Publisher:
- Wiley
Community-based healthcare services have quickly evolved over the last few decades to respond to the growing population of older adults, and their desire to remain independent in the community. In Ontario, Canada, deinstitutionalization has resulted in all persons with intellectual and developmental disabilities living and ageing, in the community. This paper compares use of home care services in Ontario among adults (age 18–99 years) with and without intellectual and developmental disabilities over time. Home care use over a 5-year period was compared between a cohort of 46,008 adults with intellectual and developmental disabilities and a random sample of 3,272,080 adults without intellectual and developmental disabilities. Persons with and without intellectual and developmental disabilities received similar types of home care services. Adults with intellectual and developmental disabilities had much higher rates of admission to home care, and at much earlier ages. While this remained true over time, slight differences by age were noted between groups. Higher use at earlier ages suggests that home care services are responding to the needs of adults with intellectual and developmental disabilities. Future research should identify (or develop) best practices for promoting independence in the community for adults with intellectual and developmental disabilities with healthcare needs. (Edited publisher abstract)
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.