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Avoiding Institutional Outcomes for Older Adults Living with Disability: The Use of Community-Based Aged Care Supports

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Title: Avoiding Institutional Outcomes for Older Adults Living with Disability: The Use of Community-Based Aged Care Supports
Language: English
Authors: Ellison, Caroline, White, Amy, Chapman, Libby
Source: Journal of Intellectual & Developmental Disability. Sep 2011 36(3):175-183.
Availability: Informa Healthcare. Telephone House, 69-77 Paul Street, London, EC2A 4LQ, UK. Tel: 800-354-1420; e-mail: healthcare.enquiries@informa.com; Web site: http://informahealthcare.com/action/showJournals
Peer Reviewed: Y
Page Count: 9
Publication Date: 2011
Document Type: Journal Articles
Reports - Research
Descriptors: Day Programs, Older Adults, Daily Living Skills, Disabilities, Community Programs, Residential Programs, Qualitative Research, Aging (Individuals), Interpersonal Relationship, Attitude Measures, Residential Care, Foreign Countries
Geographic Terms: Australia
DOI: 10.3109/13668250.2011.597377
ISSN: 1366-8250
Abstract: Background: Most people with a disability want to remain living in their own home as they age. Without additional support, people with a disability may not be able to avoid moving into residential aged care, attending day programs, or becoming isolated from participation in the wider community. This study examined whether participants perceived access to community-based aged care supports assisted with avoiding receiving more institutional models of service as they age. Method: Qualitative research processes were used to explore the perceptions of 60 individuals with a disability aged 50 years and over, in relation to ageing and the value of community-based aged care. Results: Findings indicated that participants receiving community-based aged care supports reported benefits including opportunities to develop relationships, maintain daily living skills and participate in community activities. Conclusion: 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.
Abstractor: As Provided
Number of References: 28
Entry Date: 2012
Accession Number: EJ962132
Database: ERIC
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  Value: <anid>AN0064341848;ddi01sep.11;2019Mar28.13:31;v2.2.500</anid> <title id="AN0064341848-1">Avoiding institutional outcomes for older adults living with disability: The use of community-based aged care supports. </title> <p>Background Most people with a disability want to remain living in their own home as they age. Without additional support, people with a disability may not be able to avoid moving into residential aged care, attending day programs, or becoming isolated from participation in the wider community. This study examined whether participants perceived access to community-based aged care supports assisted with avoiding receiving more institutional models of service as they age. Method Qualitative research processes were used to explore the perceptions of 60 individuals with a disability aged 50 years and over, in relation to ageing and the value of community-based aged care. Results Findings indicated that participants receiving community-based aged care supports reported benefits including opportunities to develop relationships, maintain daily living skills and participate in community activities. Conclusion 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.</p> <p>Keywords: disability and ageing; community-based aged care supports; ageing</p> <hd id="AN0064341848-2">Introduction</hd> <p>In common with the ageing of Australia's general population ([<reflink idref="bib2" id="ref1">2</reflink>]), the life expectancy of people with a disability (including intellectual, physical, and/or neurological impairments) is increasing ([<reflink idref="bib9" id="ref2">9</reflink>]; [<reflink idref="bib12" id="ref3">12</reflink>]; [<reflink idref="bib21" id="ref4">21</reflink>]; [<reflink idref="bib26" id="ref5">26</reflink>]; [<reflink idref="bib28" id="ref6">28</reflink>]). Most people, regardless of ability or impairment, want to remain independent and living in their own home for as long as possible ([<reflink idref="bib5" id="ref7">5</reflink>]). Receiving a more institutional model of service can result in an individual having fewer opportunities for self-determination ([<reflink idref="bib16" id="ref8">16</reflink>]; [<reflink idref="bib22" id="ref9">22</reflink>]; [<reflink idref="bib25" id="ref10">25</reflink>]). If people ageing with a disability could avoid institutional outcomes, they would be less likely to lose their independence, social networks, and/or to experience depression ([<reflink idref="bib6" id="ref11">6</reflink>]; [<reflink idref="bib13" id="ref12">13</reflink>]; [<reflink idref="bib17" id="ref13">17</reflink>]).</p> <p>As people get older their physical, cognitive, social, and emotional needs change, and often this change is a gradual process ([<reflink idref="bib20" id="ref14">20</reflink>]). Although some age-related conditions and support needs may have an earlier onset amongst people with a disability, most individuals in this cohort experience ageing and age-onset support needs similar to those of the general population ([<reflink idref="bib6" id="ref15">6</reflink>]). People ageing with a disability often face additional challenges due to government policies not addressing their support needs and the disability services and aged care sectors not working well together ([<reflink idref="bib6" id="ref16">6</reflink>]).</p> <p>The increasing life expectancy of people with a disability, combined with an ageing general population, creates new challenges for the government and policymakers to ensure that the needs of people ageing with a disability are met ([<reflink idref="bib6" id="ref17">6</reflink>]). To meet these needs, the Australian Government has been increasing the number of community-based aged care supports available since the mid 1990s. These supports include Australian Government Packaged Care such as Community Aged Care Packages (CACPs) and Interlink packages. However, as is the case across a number of countries, systemic barriers make it difficult for people ageing with a disability to access mainstream services which are readily available to the general population ([<reflink idref="bib7" id="ref18">7</reflink>]).</p> <hd id="AN0064341848-3">Purpose of the study</hd> <p>In this study we aimed to establish if accessing community-based aged care supports was seen by study participants to assist individuals ageing with a disability to remain living in their own home and avoid moving into residential aged care, disability-specific congregate accommodation settings, or receiving more institutional models of service. This study explored the perceived needs of people ageing with a disability (intellectual, physical, and/or neurological) by asking questions relating to their increasing support needs as they age, as well as their perceptions of the future. People ageing with a disability, as well as support staff and family members, were asked about their perceptions of community-based aged care supports and, if they were currently receiving supports, what if any value these supports provided. Participants currently receiving community-based aged care supports were asked if they felt the supports assisted them to remain living in their homes, what activities they could participate in as a result of receiving the supports, and the value participants placed on receiving the supports.</p> <hd id="AN0064341848-4">Literature review</hd> <p>Stronger policy frameworks for the provision of integrated community, disability, and aged care services are needed to support the increasing ageing population ([<reflink idref="bib14" id="ref19">14</reflink>]). Policies currently underpinning services supporting people ageing with a disability are inconsistent, and this may impact negatively on access to choices around the model of accommodation they desire ([<reflink idref="bib6" id="ref20">6</reflink>]).</p> <p>There is still a lack of reference to the health and ageing status of people with a disability in much of the research that discuss ageing issues. This lack of reference makes the development of policy and models of service difficult, and at risk of being inequitable and inappropriate ([<reflink idref="bib6" id="ref21">6</reflink>]). [<reflink idref="bib6" id="ref22">6</reflink>] also adds that people ageing with a disability have limited access to community-based aged care services. Strengthening and increasing flexibility and cooperation across the disability services, aged care and health care sectors could facilitate sound policy and action in addressing such inequalities ([<reflink idref="bib7" id="ref23">7</reflink>]; [<reflink idref="bib14" id="ref24">14</reflink>]).</p> <p>In 2000/2001, there was a trial of a pilot program funded by the Australian Government Department of Health and Ageing ([<reflink idref="bib3" id="ref25">3</reflink>]) which combined aged care and disability care. Recurrent funding was not granted despite the Australian Institute of Health and Welfare (AIHW) finding that these pilot services offered new care choices for people ageing with a disability. Concerns were raised that some pilot projects focusing on community access were either a substitute for care already provided or were a state government responsibility. The perceived "overlap" between the disability and aged care sectors created concern that people ageing with a disability were "double dipping" ([<reflink idref="bib4" id="ref26">4</reflink>]; [<reflink idref="bib6" id="ref27">6</reflink>]). However, the programs should not be seen as "double dipping" but as a valuable and economically viable complement to existing disability services in promoting wellness, community connection, and enhanced living skills that enable people ageing with a disability to delay or avoid institutional outcomes and models of service ([<reflink idref="bib7" id="ref28">7</reflink>]).</p> <p>Furthermore, previous studies from a range of countries have suggested that people ageing with a disability with access to community-based aged care supports are less likely to experience preventable secondary physical, mental, and social disorders ([<reflink idref="bib15" id="ref29">15</reflink>]; [<reflink idref="bib24" id="ref30">24</reflink>]; [<reflink idref="bib27" id="ref31">27</reflink>]). Community-based aged care supports often allow people to participate in activities that offer opportunities for social participation, self-determination, and choice, which positively affect well-being, health, and longevity ([<reflink idref="bib11" id="ref32">11</reflink>]; [<reflink idref="bib23" id="ref33">23</reflink>]).</p> <hd id="AN0064341848-5">Method</hd> <p>The project was initially developed after discussions with a range of disability and aged care agencies in South Australia, and received ethical approval from the Social and Behavioural Research Ethics Committee at Flinders University.</p> <hd id="AN0064341848-6">Participants</hd> <p>Participants were recruited using a combination of convenience and purposive sampling ([<reflink idref="bib19" id="ref34">19</reflink>]) The recruiting process involved the distribution of brochures to a range of agencies known to the project advisory group as supporting individuals living with disability who were ageing. In addition, the opportunity to participate in the research was promoted on websites and e-bulletins via two local disability information networks. The brochure outlined the purpose of the study, criteria for participation, and included a consent form. These brochures were available in several versions, including one version with symbols and pictures to support understanding for individuals with cognitive impairment or intellectual disability. Individuals interested in participating in the study, either independently or with support, contacted the research team to arrange an initial interview. Following an initial discussion, if individuals met criteria to participate and wished to do so, interview times were arranged.</p> <p> <emph>Participants' characteristics and accommodation settings.</emph> Sixty participants living with disability gave consent to participate in the study. Where a participant was unable to give informed consent, the participants' legal guardians gave assent. Criteria for selection of participants in the study included being over 50 years of age, living with disability (intellectual, physical, and/or neurological), and living in the community. Participants responded to brochures and emails that were distributed via the collaborating agencies involved in the project inviting them to contact the researchers if they were interested in being interviewed. Thirty-four males and 26 female participants with an average age of 59.0 years responded and were interviewed. All 60 participants lived in South Australia within a variety of accommodation settings with differing levels of support. Twenty-four participants lived in community accommodation linked to support provided by a nongovernment not-for-profit organisation or a government agency. Fourteen participants either owned or were purchasing their home and 26 participants rented from Housing SA or the private rental market. One participant lived with a parent in a retirement village. Of the 60 participants, 41 had an intellectual disability, 16 had a physical disability, and three had a physical and neurological disability. Fifty-three participants reported receiving some supports to assist with activities of daily living. The remaining participants did not access formal services and reported that any support they did receive was provided solely by a significant other or family member. Of the 53 participants receiving support for daily living from a disability services agency, 22 reported currently receiving additional support for their needs relating to ageing via Community Aged Care Packages (CACPs) or Interlink packages.</p> <p> <emph>Significant others and supports and service providers as contributors</emph>. In addition to 60 individuals living with a disability, 26 staff (including support workers, team leaders, coordinators, and managers) and six family members of participants were interviewed. Family members and staff were interviewed at the request of participants. During semistructured interviews, participants were asked if there was someone in their life they would like us to speak to for additional information and insights. If a family member or significant other was suggested, that person was contacted and invited to be interviewed. These individuals were included to explore in more depth the perceived experiences of individuals living with disability and to see if the perceptions of those providing support matched the views presented by participants. All those nominated accepted the invitation and were interviewed also using semistructured interviews seeking their perspective on the same questions discussed with participants living with disability.</p> <hd id="AN0064341848-7">Data collection</hd> <p>Semiguided interview questions were developed by members of the project team based on the literature and service providers' aim to understand the perceptions of participants about ageing and the supports needed to remain living in the community into the future. Research questions focused on exploring the nature of any current or perceived future changing support needs in old age and/or any physical, cognitive, or social changes that may put at risk participants' ability to remain living in their current home, increase their risk of social isolation, or contribute to them prematurely acquiring a chronic health condition. For those participants with access to additional "top up" aged care resources, individuals, their support personnel, and service providers were asked whether and/or how community-based aged care supports enabled participants to avoid placement in institutional settings or receiving more institutional models of support. Finally, the 22 participants involved in the study currently receiving funded community-based aged care support were asked questions designed to identify any perceived beneficial outcomes from this. Interviews were conducted in the participant's home, in a café, or quiet public place nominated by participants. With permission from participants, field notes as well as audio recordings were taken.</p> <hd id="AN0064341848-8">Data analysis</hd> <p>Most interviews were 1–1½ hours in duration. Notes and recordings from interviews were transcribed verbatim as soon as possible after an interview, then read and coded using data management software NVivo (Version 8, 2008, Melbourne, QSR International) looking for reoccurring themes and concepts. This process of thematic analysis as described by [<reflink idref="bib8" id="ref35">8</reflink>] does not involve predetermined codes, but allows themes to emerge from initial data collection. Both the first author and a research assistant independently coded two interviews and then compared their codes until a recommended coding scheme was established. The coding scheme from this early thematic analysis was then discussed with the research team and compared back to any earlier interview transcripts. This first phase of data analysis was undertaken until there was agreement on a range of themes and concepts against which subsequent data was coded. If new themes were identified in later interviews and subsequently included, initial transcripts were reanalysed. This process of ongoing data analysis continued with each interview and highlighted participants' perspectives on their current experiences or future views of ageing, as well as their engagement with disability and aged care service systems. This enabled the identification of a broad view of the key ideas on which the findings and reports were founded. Specific examples from the data were included throughout the results to demonstrate and corroborate assertions.</p> <hd id="AN0064341848-9">Results</hd> <p>The findings of the study established that age-related changes for participants with a disability tend to follow similar patterns to those of individuals without a disability. Examples of age-related changes included experiencing reduced mobility, declines in cognitive ability, and changes in health status, which led to participants needing an increasing number of medical reviews and medications.</p> <p>This study also found that community-based aged care supports, in addition to disability supports, assisted participants to remain living in their home, maintain skills around activities of daily living, sustain connections with family and friends, and, in some cases, increase community participation and leisure.</p> <hd id="AN0064341848-10">Where to live</hd> <p>Participants in the study expressed a clear preference to remain living in their own homes for as long as possible, including when home was a disability services coordinated group home. Most participants also reported a desire to remain where and with whom they were currently living. Only two of the 60 participants were unhappy with their current accommodation. Comments such as "moving is a scary thought to me ... I don't want to be in a nursing home. I value my independence ... I couldn't do it in a nursing home" (Peter, aged 50 years) reflected the most commonly reported responses to questions about where participants wanted to live as they age. Paid staff reported that for participants without access to community-based aged care supports, their ability to remain living in their home required additional support for activities of daily living and community participation.</p> <p>Paid staff reported that other factors such as physically inaccessible housing and a strained health care system were also putting participants' current accommodation placements at risk. One manager's statement represented the general consensus of responses from paid staff around accessible accommodation:</p> <p>They need houses that they can live in until the end of life ... none of our houses are suitable to stay in until the end of life. It is our biggest issue I think – having the right accommodation for the people to stay in forever.</p> <hd id="AN0064341848-11">What is ageing and does having a disability have an impact?</hd> <p>Participants suggested that ageing is not exclusively related to a person's chronological age, and that if a person felt old it was usually for a reason linked to physical health or mobility, rather than how old they were. Participants reported that getting old means that people take longer to do things, feel tired, experience reduced mobility, and require more medical reviews and medication. Dan (aged 63) said that ageing means, "You lose a lot of your independence," while Pat (aged 57) declared it is when "You've got stacks of pills to take."</p> <p>The findings from the study suggest that for individuals with a history of receiving disability supports it was difficult to differentiate between specific age-related changes and a person's disability. Some participants reported that having a disability accelerated the ageing process, with noticeable impacts on mobility in particular occurring earlier than is often reported for individuals without disability. However, the findings were mixed around whether having a disability in itself was enough to bring on early age-related changes</p> <p>Participants reported other factors such as poverty, lack of social connections, limited participation in meaningful activity, inadequate support hours, inappropriate accommodation, and complex health needs also had a negative impact on ageing. June (aged 74) summarised whether or not having a disability affects ageing by stating, "It is the unknown ... what I think most of the time is that I am no different to any other woman who is ageing, other than the fact that I have this physical limitation and that compounds it." Responses from paid staff support the perception that individuals living with disability age in similar ways to individuals without disability, but with less self-determination and fiscal resources to support choice, change can have an impact at an earlier age. One manager stated, "the effects of ageing are more significant because they are already living with issues ... they seem to experience the impact of ageing a lot sooner than people without a disability."</p> <p>Participants were asked what older people needed. Their responses included needing assistance with activities of daily living, transport, equipment, financial resources to promote having choices, family, access to leisure activities, more social contact, and companionship. Joy (aged 59) stated that older people need "to be heard, to be listened to, to have advocates, to be represented appropriately." Several participants reported feeling vulnerable when contemplating the future and getting older.</p> <p>In the main, participants living with physical disability reported that they were currently living a typical life, but having a disability and believing there is a lack of predictable support available in the future made them feel vulnerable. They also reported that having a physical disability made them more vulnerable to having to relinquish control of their lives to institutionalised models of service in the future, particularly if they lost the support currently provided by their spouse and/or partner.</p> <hd id="AN0064341848-12">A better life</hd> <p>Most participants reported feeling socially connected and perceived they were involved in leisure pursuits of some kind that provided satisfaction. When contemplating what they wanted to do with their days as they get older, a number of participants expressed preferences to participate in leisure and social activities. Responses indicated that some participants receiving community-based aged care supports became more active, lived more independently, and engaged in similar or more leisure activities than when they were younger. Participants who expressed a desire for more support to facilitate social opportunities and increased participation in leisure, either lived alone or with a person with which they did not have a positive relationship. These participants were not well socially connected, had a limited work history, or lived with limited support in rental accommodation or in a setting not of their choice.</p> <p>There were limited reports of increased feelings of sadness, loneliness, or depression. This could be due to the fact that the participants who chose to be involved in the study did so because they were feeling positive about their lives.</p> <hd id="AN0064341848-13">Perceptions of options in later life</hd> <p>Participants not receiving community-based aged care supports indicated limited knowledge about ageing, its potential impacts, and the range of community-based aged care services available in the general community. Comments from participants receiving at least 10 hours per week of disability support reflected a sense of having support to plan for the future. Participants currently receiving less than five hours a week or no support from disability services reported a lack of knowledge about community-based aged care services and could not clearly express where to access information to plan for ageing. None of the families, carers, or paid professionals expressed security in knowing how to plan and access supports to age successfully.</p> <p>Although many participants reported wanting to remain in their own home and avoid moving into residential aged care, they expressed concern and powerlessness over where they could live in later life. Maggie (aged 55) said, "I don't want to leave here"; while Nicky (aged 57) commented "I am trying to fight it ... I would like to stay here and be able to." Denise (aged 52) enjoys living on her own, but said:</p> <p>Why I would end up living with another person with a disability is that we could share the support worker. It is an economic necessity, not a choice ... it's a choice of one shitty thing or another shitty thing.</p> <p>Those supporting participants also expressed concerns about limited options: "they need services that support their needs ... rather than just being dumped ... they need to be assessed early and have a plan ... be consulted about what they want."</p> <hd id="AN0064341848-14">Do community-based aged care supports help?</hd> <p>Twenty-two of the 60 participants interviewed in the study had access to supports provided by CACPs or Interlink packages. The participants who did receive these supports were asked what kinds of activities were done with CACPs or Interlink staff. Activities identified included personal care, support to attend medical appointments, activities of daily living, recreational activities, and accessing community activities such as church. Participants often maintained social connections with family, friends, and individuals from previous accommodation and work places as a result of these supports. Participants receiving these supports reported positive outcomes for relationships, having choices, self-determination, opportunities to participate in valued activities, and accommodation security. These CACPs/Interlink supports also provide advocacy and opportunities for planning. For example, Dorothy (aged 68) commented, "I like it, people come around and take you out everywhere ... I like to go out with CACPs."</p> <p>The benefits of community-based aged care supports reported by participants and staff included individualised one-to-one support, access to social support that is different from personal care, more independence, and choice. One staff member said, "it enables them to have one-on-one time ... otherwise ... too bad if you don't like it, you are just going to have to fit in." While another staff member commented that CACPs/Interlink supports allow participants "a little bit of freedom to do things they might like, some flexibility ... visit people they could not normally."</p> <p>Staff also commented that they felt these supports were likely to enable participants to remain living in their current accommodation following retirement and avoid more institutional types of services such as centre-based day options. The majority of staff reported that participants would lose skills and deteriorate quickly without access to supplementary aged care supports to ensure additional assistance to maintain skills around activities of daily living and access to the community. The findings of the study indicate that CACPs and Interlink supports provide an additional and valuable complement to state-funded disability services, resulting in better outcomes for overall well-being, and leading to a delay in or avoidance of admission to residential settings.</p> <hd id="AN0064341848-15">Could community-based aged care be improved?</hd> <p>This study sought to explore whether participants identified any disadvantages of receiving community-based aged care supports. None of the participants receiving CACPs/Interlink packages identified any disadvantages. Staff identified that to receive CACPs individuals needed to be retired, which meant that sometimes participants had to choose between maintaining their part-time employment and having support at home. This choice is often difficult because employment is highly valued by participants. Participants suggested that working provided activity, access to social contacts and structure to the day. This was not an issue with Interlink packages, as those packages do not have retirement or an assessment by the Aged Care Assessment Team as criteria for eligibility. Some staff reported that increasing costs associated with providing CACPs/Interlink packages made it difficult to meet participant requests to access supports on weekends and to have more flexibility around provision of hours to occasionally have opportunities for extended support.</p> <hd id="AN0064341848-16">Perceptions of unsatisfactory outcomes arising from admission to residential aged care</hd> <p>Staff and some participants commented that from their experience the outcomes for individuals with a disability who were admitted to mainstream residential aged care were often unsatisfactory. Their perceptions were that moving to a residential aged care facility lead to loneliness, depression, and/or even premature death. Participants and staff suggested these outcomes may be due to a combination of moving too early when disability services could not meet ageing needs, the emotional impact of dislocation, and a lack of knowledge in aged care services of how to meet the needs of people with a disability.</p> <hd id="AN0064341848-17">Discussion</hd> <p>The findings of this study concur with that of other research being conducted in Australia by researchers such as Bigby (2008) and in the United States by [<reflink idref="bib18" id="ref36">18</reflink>]. These researchers suggested that simply applying the traditional paradigms of "successful ageing" to individuals living with disability is unlikely to be effective. The findings of the current study suggest that there needs to be continued and increased funding of community-based aged care support programs for people ageing with a disability, along with access to community-based aged care programs providing opportunities for maintaining positive health, social networks, and community participation into later life. As essential programs for individuals ageing with a disability, they should not be seen as "double dipping." Rather, these programs should be seen as valuable and economically viable additions to the existing range of human and disability services promoting wellness, community connection, and enhanced living skills enabling people ageing with a disability to delay or avoid institutional outcomes and increasingly institutionalised models of service.</p> <p>In Australia, clarification is required regarding where responsibility lies, in terms of federal/state governmental jurisdiction, for providing support to ageing individuals with a disability. The Australian Longitudinal Study of Ageing (ALSA; [<reflink idref="bib10" id="ref37">10</reflink>]) reported the need for specific intervention for subgroups such as individuals with a disability who have limited support networks. Current access criteria need to be reconsidered because some individuals with a disability experience onset of age-related support needs earlier than the general population. Other identified special needs groups in the population also experience onset of aged-related support needs earlier, and this is recognised in policy and legislation. Older Australians with a disability could be included as a special needs group under Commonwealth aged care legislation as it applies to the wider ageing Australian population. The issue of the need for better paradigms, theories, policies, and collaboration, along with hearing the voices of older individuals living with disability with the same clarity and vigour as is beginning to happen for older people without disability was raised at an international level by [<reflink idref="bib18" id="ref38">18</reflink>].</p> <p>There is a perception that a person with a disability receiving support, funding, and services from disability and aged care services concurrently is "double dipping" ([<reflink idref="bib6" id="ref39">6</reflink>]). This perception is a barrier that must be removed because disability services and aged care address different needs. This situation may be relieved with the opening of opportunities for individuals with a disability to access models such as individualised or self-managed funding across the lifespan. This is needed because many individuals living with minimal supports from disability services through adulthood can find themselves without supports or access to advocacy to assist them to navigate the system in later life. Results from this study also support the notion that individuals experience variable patterns of ageing due to the complex nature of the impact of their disability, and thus require flexibility with eligibility criteria and service provision. For example, people with a disability who are employed should be eligible to receive community-based aged care supports.</p> <p>Participants were asked about their knowledge of the impact of ageing, what services are available for them, and how to access these services. Overall, participants did not appear to be well informed about ageing, and mostly spoke about health and mobility issues, rather than other changes or planning for the future. Participants who received minimal or no support from disability services reported a distinct lack of knowledge about community-based aged care services, and did not know where to get information about such services. Participants were not the only ones to struggle with questions about information and planning.</p> <p>Families, carers, and paid professionals, supporting participants without access to community-based aged care, expressed having little security in knowing how to plan and access additional supports around ageing for themselves or participants in the future. Although there has been an increase in interprofessional understanding between disability and aged care services in recent years, this needs to continue particularly around direct service providers. The existence of a well-educated and trained workforce is central to the provision of quality services to, and good outcomes for, people with a disability throughout life. There is a need for staff from both sectors to educate each other and work together so that people with a disability have the best opportunities in later life.</p> <p>Direct care workers, people with a disability, and their support persons also need education around planning for ageing and the supports available. This reiterates the need for long-term planning and continuity of access to support services across the lifespan for individuals with a disability ([<reflink idref="bib1" id="ref40">1</reflink>]). Without this, participants of this study reported strong perceptions of being vulnerable and their future not being within their control. Participants reported fearing the need to prematurely relinquish control of their lives to institutionalised models of service in the future, particularly if they lost the support currently provided by their spouse and/or partner.</p> <p>This study provides a foundation for further national and international studies to address the paucity of research around the similarities, benefits, and challenges of supporting individuals living with disability within mainstream aged care services and supports. There needs to be increased understanding about the needs of older individuals living with disability by both the aged care and disability sectors. The findings of this study support the notion that interdisciplinary cooperation and understanding is required, as well as the policies, systems, and resources to facilitate increased partnerships between aged care, disability, and other human service providers in Australia and internationally.</p> <hd id="AN0064341848-18">Conclusion</hd> <p>This study suggests that while a number of age-related conditions and support needs may have an earlier onset for some people with a disability, most older individuals with lifelong disability experience similar ageing patterns to the general population. Most participants ageing with a disability desired to maintain independence and self-determination, as well as to remain living in their own homes for as long as possible. Although many of the participants reported positive attitudes as well as positive experiences of ageing, there were still concerns about what the future held and how to access additional support when it was needed. Several participants were aware they were likely to lose control over some aspects of their lives as they aged, especially when it came to remaining living in their own homes, and avoiding institutional outcomes.</p> <p>The study aimed to establish whether community-based aged care supports would assist individuals ageing with a disability to remain living in their own homes and avoid moving into residential aged care or disability specific accommodation settings or institutional models of service. Those participants of the study receiving community-based aged care supports, either CACPs or Interlink packages, reported that the supports had positive impacts on their lives and facilitated good ageing. Participants reported becoming more active and engaging in similar or more leisure activities than when they were younger, living more independently, maintaining and forming new social connections, and increasing their opportunities for community participation. Participants also commented that as a result of receiving these supports there were positive outcomes for relationships, self-determination, for the anticipation of and participation in valued activities, and accommodation security.</p> <p>The federal and state governments need to clarify policy and responsibility for the provision of services to individuals with a disability as they age and as their needs change. The service response must be at least equal to those currently available to individuals ageing without a disability. The clarification in policy and responsibility will provide the framework for the disability and aged care service providers to continue their work on developing collaborative relationships and increasing access to community-based aged care supports. Consideration should be given to the inclusion of Australians with a disability into legislation as a special needs group, in the same manner as other identified groups such as veterans and Australians of Aboriginal or Torres Strait Islander background (Aged Care Act 1997).</p> <p>This study concludes that people ageing with a disability who access community-based aged care supports experience a range of positive benefits around minimising institutional service outcomes. Therefore, it is time for policy and service development to move forward to enable people ageing with a disability to access mainstream community-based aged care supports.</p> <hd id="AN0064341848-19">Author note</hd> <p>This project was funded by Flinders University, Julia Farr MS McLeod Benevolent Fund, Minda Inc., CARA, Masonic Homes, Orana, Helping Hand Aged Care, Bedford, Barkuma, Home Care Plus, and ACH Group.</p> <p> <emph>Conflicts of interest:</emph> None.</p> <ref id="AN0064341848-20"> <title> References </title> <blist> <bibl id="bib1" idref="ref40" type="bt">1</bibl> <bibtext> Ageing & Disability Coalition (ACROD). (2005). Working Together: Policy on Ageing and Disability. Retrieved on March 25, 2010, from <ulink href="http://www.agedcare.org.au/POLICIES-&-POSITION/Policies/ageing%5fdisability%5fpolicy.pdf">http://www.agedcare.org.au/POLICIES-&-POSITION/Policies/ageing%5fdisability%5fpolicy.pdf</ulink></bibtext> </blist> <blist> <bibl id="bib2" idref="ref1" type="bt">2</bibl> <bibtext> Australian Bureau of Statistics. (2009). 4102.0 Australian social trends, March 2009: Future population growth and ageing. Retrieved on March 25, 2010, from <ulink href="http://www.abs.gov.au/AUSSTATS/abs@nsf/Lookup/4102.0Main+Features10March%202009">www.abs.gov.au/AUSSTATS/abs@nsf/Lookup/4102.0Main+Features10March%202009</ulink></bibtext> </blist> <blist> <bibl id="bib3" idref="ref25" type="bt">3</bibl> <bibtext> Australian Government Department of Health and Ageing. (2007). A literature review and description of the regulatory framework: 2. Older Australians and residential aged care in Australia. Retrieved on March 25, 2010, from <ulink href="http://www.health.gov.au/internet/main/publishing.nsf/Content/ageing-iar-review-framework.htm∼ageing-iar-review-framework-2.htm">http://www.health.gov.au/internet/main/publishing.nsf/Content/ageing-iar-review-framework.htm∼ageing-iar-review-framework-2.htm</ulink></bibtext> </blist> <blist> <bibl id="bib4" idref="ref26" type="bt">4</bibl> <bibtext> Australian Institute of Health and Welfare (AIHW). (2006). National evaluation of the Aged Care Innovative Pool Disability Aged Care Interface Pilot: Final report (Aged care series no. 12. Cat. no. AGE 50). Canberra, ACT: Author.</bibtext> </blist> <blist> <bibl id="bib5" idref="ref7" type="bt">5</bibl> <bibtext> Bigby, C. (2004). Ageing with a lifelong disability: A guide to practice, program and policy issues for human services professionals. London, UK: Kingsley.</bibtext> </blist> <blist> <bibl id="bib6" idref="ref11" type="bt">6</bibl> <bibtext> Bigby, C. (2008). Beset by obstacles: A review of Australian policy development to support ageing in place for people with intellectual disability. Journal of Intellectual & Developmental Disability, 33, 76–86. doi: 10.1080/13668250701852433</bibtext> </blist> <blist> <bibl id="bib7" idref="ref18" type="bt">7</bibl> <bibtext> Ellison, C., Chapman, L., Pascoe, E., Patmore, A. (2009). Avoiding institutional outcomes for older adults living with disability: The use of community based aged care supports. Adelaide, South Australia: Department of Disability Studies, Flinders University.</bibtext> </blist> <blist> <bibl id="bib8" idref="ref35" type="bt">8</bibl> <bibtext> Ezzy, D. (2002). Qualitative analysis: Practice and innovation. Crows Nest, NSW, Australia. Allen & Unwin.</bibtext> </blist> <blist> <bibl id="bib9" idref="ref2" type="bt">9</bibl> <bibtext> Fender, A., Marsden, L., Starr, J. M. (2007). Assessing the health of older adults with intellectual disabilities: A user-led approach. Journal of Intellectual Disabilities, 11, 223–239. doi: 10.1177/1744629507080785</bibtext> </blist> <blist> <bibtext> Flinders Centre for Ageing Studies. (2006). Australian Longitudinal Study of Ageing: 15 years of ageing in South Australia. Adelaide, South Australia: Author.</bibtext> </blist> <blist> <bibtext> Harlan-Simmons, J. E., Holtz, P., Todd, J., Mooney, M. F. (2001). Building social relationships through valued roles: Three older adults and the Community Membership Project. Mental Retardation, 39, 171–180. doi: 10.1352/0047-6765(2001)039<0171:BSRTVR>2.0.CO;2</bibtext> </blist> <blist> <bibtext> Hatzidimitriadou, E., Milne, A. (2005). Planning ahead: Meeting the needs of older people with intellectual disabilities in the United Kingdom. Dementia, 4, 341–359. doi: 10.1177/1471301205055027</bibtext> </blist> <blist> <bibtext> Hutchinson, P., McGill, J. (1992). Leisure, integration and community. Ottawa, Canada: Leisurability Publications.</bibtext> </blist> <blist> <bibtext> Keleher, H. (2003). Community care in Australia. Home Health Care Management & Practice, 15, 367–374. doi: 10.1177/1084822303252394</bibtext> </blist> <blist> <bibtext> Kinne, S., Patrick, D. L., Doyle, D. L. (2004). Prevalence of secondary conditions among people with disabilities. American Journal of Public Health, 94, 443–445. doi: 10.2105/AJPH.94.3.443</bibtext> </blist> <blist> <bibtext> Mahon, N. E., Yarcheski, A. (2001). Outcomes of depression in early adolescents. Western Journal of Nursing Research, 23, 360–375. doi: 10.1177/01939450122045212</bibtext> </blist> <blist> <bibtext> Marshall, D. (1987). Silver threads: Critical reflections on growing old. Toronto, Canada: Between the Lines.</bibtext> </blist> <blist> <bibtext> Minkler, M., Fadem, P. (2002). "Successful aging:" A disability perspective. Journal of Disability Policy Studies, 12, 229–235. doi: 10.1177/104420730201200402</bibtext> </blist> <blist> <bibtext> Patton, M. Q. (2002). Qualitative research and evaluation methods (3rd). Thousand Oaks, CA: Sage.</bibtext> </blist> <blist> <bibtext> Peterson, C. (2010). Looking forward through the lifespan: Developmental psychology (5th). Frenchs Forest, NSW: Pearson Australia.</bibtext> </blist> <blist> <bibtext> Puri, B. K., Lekh, S. K., Langa, A., Zaman, R., Singh, I. (1995). Mortality in a hospitalized mentally handicapped population: A 10-year survey. Journal of Intellectual Disability Research, 39, 442–446. doi: 10.1111/j.1365-2788.1995.tb00549.x</bibtext> </blist> <blist> <bibtext> Sands, D. J., Wehmeyer, M. L. (1996). Self-determination across the life span: Independence and choice for people with disabilities. Baltimore, MD: Brookes.</bibtext> </blist> <blist> <bibtext> Sheldon, K. M., Ryan, R. M., Deci, E. L., Kasser, T. (2004). The independent effects of goal contents and motives on wellbeing: It's both what you pursue and why you pursue it. Personality and Social Psychology Bulletin, 30, 475–486. doi: 10.1177/0146167203261883</bibtext> </blist> <blist> <bibtext> Simeonsson, R. J., Bailey, D. B., Scandlin, P., Huntington, G. S., Roth, M. (1999). Disability, health, secondary conditions and quality of life: Emerging issues in public health. Simeonsson R. J., McDevitt I. N., Issues in disability and health: The role of secondary conditions and quality of life (239–255). Chapel Hill, NC: University of North Carolina Press.</bibtext> </blist> <blist> <bibtext> Stancliffe, R. J. (2006). Services: Availability, issues and models. Dempsey I., Nankervis K., Community disability services: An evidence-based approach to practice (272–295). West Layfatte, IN: UNSW Press.</bibtext> </blist> <blist> <bibtext> Walsh, P. N. (2005). Ageing and health issues in intellectual disabilities. Current Opinion in Psychiatry, 18, 502–506. doi: 10.1097/01.yco.0000179487.85261.6f</bibtext> </blist> <blist> <bibtext> Wilber, N., Mitra, M., Walker, D. K., Allen, D., Meyers, A. R., Tupper, P. (2002). Disability as a public health issue: Findings and reflections from the Massachusetts Survey of Secondary Conditions. Milbank Quarterly, 80, 393–421. doi: 10.1111/1468-0009.00009</bibtext> </blist> <blist> <bibtext> Yang, Q., Rasmussen, S. A., Friedman, J. M. (2002). Mortality associated with Down's Syndrome in the USA from 1983 to 1997: A population-based study. Lancet, 359, 1019–1025. doi: 10.1016/S0140-6736(02)08092-3</bibtext> </blist> </ref> <aug> <p>By Caroline Ellison; Amy White and Libby Chapman</p> <p>Reported by Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib12" firstref="ref3"></nolink> <nolink nlid="nl2" bibid="bib21" firstref="ref4"></nolink> <nolink nlid="nl3" bibid="bib26" firstref="ref5"></nolink> <nolink nlid="nl4" bibid="bib28" firstref="ref6"></nolink> <nolink nlid="nl5" bibid="bib16" firstref="ref8"></nolink> <nolink nlid="nl6" bibid="bib22" firstref="ref9"></nolink> <nolink nlid="nl7" bibid="bib25" firstref="ref10"></nolink> <nolink nlid="nl8" bibid="bib13" firstref="ref12"></nolink> <nolink nlid="nl9" bibid="bib17" firstref="ref13"></nolink> <nolink nlid="nl10" bibid="bib20" firstref="ref14"></nolink> <nolink nlid="nl11" bibid="bib14" firstref="ref19"></nolink> <nolink nlid="nl12" bibid="bib15" firstref="ref29"></nolink> <nolink nlid="nl13" bibid="bib24" firstref="ref30"></nolink> <nolink nlid="nl14" bibid="bib27" firstref="ref31"></nolink> <nolink nlid="nl15" bibid="bib11" firstref="ref32"></nolink> <nolink nlid="nl16" bibid="bib23" firstref="ref33"></nolink> <nolink nlid="nl17" bibid="bib19" firstref="ref34"></nolink> <nolink nlid="nl18" bibid="bib18" firstref="ref36"></nolink> <nolink nlid="nl19" bibid="bib10" firstref="ref37"></nolink>
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  Data: Avoiding Institutional Outcomes for Older Adults Living with Disability: The Use of Community-Based Aged Care Supports
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Intellectual+%26+Developmental+Disability%22"><i>Journal of Intellectual & Developmental Disability</i></searchLink>. Sep 2011 36(3):175-183.
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  Data: Informa Healthcare. Telephone House, 69-77 Paul Street, London, EC2A 4LQ, UK. Tel: 800-354-1420; e-mail: healthcare.enquiries@informa.com; Web site: http://informahealthcare.com/action/showJournals
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  Data: <searchLink fieldCode="DE" term="%22Day+Programs%22">Day Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Older+Adults%22">Older Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Daily+Living+Skills%22">Daily Living Skills</searchLink><br /><searchLink fieldCode="DE" term="%22Disabilities%22">Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Community+Programs%22">Community Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Residential+Programs%22">Residential Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Qualitative+Research%22">Qualitative Research</searchLink><br /><searchLink fieldCode="DE" term="%22Aging+%28Individuals%29%22">Aging (Individuals)</searchLink><br /><searchLink fieldCode="DE" term="%22Interpersonal+Relationship%22">Interpersonal Relationship</searchLink><br /><searchLink fieldCode="DE" term="%22Attitude+Measures%22">Attitude Measures</searchLink><br /><searchLink fieldCode="DE" term="%22Residential+Care%22">Residential Care</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink>
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  Data: 10.3109/13668250.2011.597377
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  Data: Background: Most people with a disability want to remain living in their own home as they age. Without additional support, people with a disability may not be able to avoid moving into residential aged care, attending day programs, or becoming isolated from participation in the wider community. This study examined whether participants perceived access to community-based aged care supports assisted with avoiding receiving more institutional models of service as they age. Method: Qualitative research processes were used to explore the perceptions of 60 individuals with a disability aged 50 years and over, in relation to ageing and the value of community-based aged care. Results: Findings indicated that participants receiving community-based aged care supports reported benefits including opportunities to develop relationships, maintain daily living skills and participate in community activities. Conclusion: 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.
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