Retirement and People with Intellectual Disability in the Australian Context

Abstract

This paper examines retirement by older workers with intellectual disability. Much research and intervention about retirement and intellectual disability in the last decade or so emanates from Australia, although there are some current cross-sectional and descriptive studies from other developed countries. The Australian literature stands out as the forerunner in the development and controlled evaluation of interventions to support the process of preparing for, practising, and then experiencing retirement. Therefore, this paper begins by briefly describing retirement-related aspects of employment for people with intellectual disability in Australia. Next, we present a critical summary of Australian research on the retirement of people with intellectual disability, supported by a briefer analysis of international literature. Then, key issues, such as financial factors, age of retirement, the time course of retirement (sudden or gradual), and self-determination regarding the decision to retire, are explored. Finally, to help guide future research and policy, we identify a number of retirement-related research questions that are currently under-researched or unexamined.

1. Background

The retirement-specific policy goals and outcomes for people with intellectual disability should be no different to the goals for everyone. That is, policies that produce optimal health and well-being that will support outcomes enabling people to do the things that they choose and value as they age. As it stands, however, intellectual disability-specific policy frameworks with respect to retirement and healthy ageing are largely absent, which has limited progress in this area of practice. Although it might be argued that the retirement support issues between people with and without intellectual disability are largely the same, this is only true up to a point, meaning any future policy development in this area should have generalised inclusive and self-determined outcomes in mind, but with sufficient nuance for diverse support needs. Major differences are in the areas of financial literacy, the lifelong need for support from others across multiple life domains that increases with ageing, the amount of saved money for retirement, and the need for support to participate in socially inclusive activities in retirement. Taking retirement to mean withdrawal from paid work, retirement only applies to that subset of adults with intellectual disability who have worked and been paid. Therefore, to fully understand the concept of retirement as it relates to people with intellectual disability, it is first necessary to know about their employment situation. The information that follows involves retirement-related employment issues for older adults with intellectual disability in Australia that have received fairly regular attention for more than a decade. Although Australian-specific, the issues and trends are found in other comparable contexts. In writing this paper, we found that to provide sufficient context and to cover the range of this activity, we needed to report on intervention projects and research from the last decade or more.

Employment of People with Intellectual Disability in Australia

Compared to the general community, Australians with intellectual disability have very low levels of paid employment [1]. The two main types of employment available to them are sheltered employment in segregated disability-specific settings and mainstream employment in the general labour market (also known as “open” employment). As described below, government-funded disability services run by non-government organisations provide support for each form of employment.

Sheltered Employment. Sheltered employment providers directly employ people with disabilities in settings where most or all employees are people with a disability. Typically, these are factories or workshops where workers mostly do unskilled work tasks, such as packaging. Workers with a disability in sheltered employment are paid a productivity-based wage, which is below the national minimum wage (AUD 2.90) and is based on a percentage of the full rate for that type of work, depending on their assessed productivity.

Mainstream Employment. In contrast to sheltered employment, the individual with a disability works for an employer in the open labour market and is supported by a Disability Employment Service (DES). Most receive the full hourly industrial award rate for this work, the same as employees without disability. As a result, workers with intellectual disability in mainstream employment typically earn a much higher wage than their counterparts in sheltered employment. DES participants with intellectual disability typically access the Employment Support Service (ESS) program stream (DES-ESS), which is for individuals with a permanent disability assessed as needing continuing support to participate in paid work. Most DES-ESS providers have a small percentage of clients with intellectual disability; however, some specialise in people with intellectual disability, such as Jobsupport, which serves people with a moderate intellectual disability. Jobsupport is an example of an outstandingly successful service, with the latest employment outcome data showing 52-week job tenure rates of 88.68%, compared to a DES average of 32.73% [2]. These outstanding results have been linked to adherence to the evidenced-based components of the model of employment support that, outside of Australia, is termed supported employment (SE) [3]. The key features of the SE model are as follows: (1) A personalised assessment process based on the individual’s strengths, skills, employment goals, and potential barriers to success; (2) job development and placement to match the individual’s needs and preferences; (3) on-site specialist training provided to the worker using learning theory and applied behaviour analysis that is focused on how to complete tasks to employer standards and how to interact socially within the workplace; and (4) ongoing support services provided to the worker and employer, including site visits to deal with changes and issues that arise (e.g., training in new tasks or learning to work with a new supervisor).

2. Income from Paid Work and the Disability Pension

Eligibility for the government-funded Disability Support Pension (DSP) in Australia requires the person to be aged 16 or over with a disability that will persist for more than two years and that stops them from working more than 15 h per week without support [4]. Individuals with intellectual disability are normally required to provide a report from a psychologist with information about intellectual functioning, including an IQ score of <70, as evidence of eligibility for the DSP. Even so, DSP recipients may engage in paid work for up to 29 h per week without this affecting their DSP [4]. However, an income test does apply, and so a pension payment can be affected. Currently, if a person earns more than AUD 102 per week (from wages or any other source), they will lose one dollar from their pension for every two dollars earned over AUD 102 per week [5]. These rules are the same regardless of whether the person is employed in sheltered or mainstream employment. Crucially, as there is a supported wage system in Australia that is productivity-based, virtually all people working in sheltered employment, and some in mainstream employment, earn below the national minimum wage [6].

In effect, people lose some money from their DSP but are still better off than if they were not working. If, at any age, a person with a disability stops work and retires, they no longer receive wages. However, they continue to receive the DSP, and the full pension will be restored when they stop work. That is, the amount of the DSP will increase, partly offsetting the reduced income due to no wages in retirement. This situation may make it financially easier to retire at a younger age without having to wait to be old enough to receive the age pension. Interestingly, people who had retired from sheltered employment reported that the amount of money they had in retirement was much the same as when they worked [7]. A factor that is pertinent to the US is that private health insurance is often linked with employment [8], so the choice to retire may have added financial costs. While the Medicare/Medicaid system in the US is a backstop, it only provides a limited amount of healthcare coverage. By contrast, many other countries offer universal health access, so such financial considerations are likely less relevant.

3. Acknowledgment of Ageing and Retirement Issues

In response to the dual issues of an ageing workforce of people with intellectual disability and the health-related premature ageing of some people with intellectual disability (e.g., Down syndrome), Australian disability services first recognised the changing support needs of their ageing clients after the turn of the century [9]. Demographic projections at the time showed that these complex ageing and retirement issues will become even more common [9,10]. In the absence of a national disability retirement policy framework or formally funded options to support this ageing cohort, individual disability services created a range of ad hoc transition-to-retirement responses. The responses included (a) modifying work tasks or adapting the work environment to complement an individual’s declining productivity; (b) enabling individuals to cut back to part-time work; (c) providing personalised transport options to the workplace when their usual transport was no longer possible; and (d) creating a retirement-style day program for their ageing clients with intellectual disability.

4. Transition to Retirement Research

People with intellectual disability are living longer [11], so nowadays, larger numbers of people are reaching the typical retirement age, resulting in the increased need for retirement-related research, policy, and service provision. Given the ongoing difficulties in finding employment, most employment-related research has focused on the issues of finding and keeping jobs [12,13]. As a result, there has been far greater research attention to the challenges people with intellectual disability have in gaining and retaining employment [14] rather than research into making the transition from employment into retirement. As with the wider population, the need for some form of retirement planning has been noted, such as a recent Irish study arguing for including ways that life in retirement for people with intellectual disability can be linked to wider community participation [15]. However, this whole area of retirement planning, and in particular the assertion that it should be integral to employment supports [7], remains untested, making retirement planning a significant research, policy, and practice gap.

4.1. Transition to Retirement from Sheltered Employment

Almost all Australian retirement research has looked at people with intellectual disability retiring from sheltered employment. An Australian survey of disability-specific day programs (i.e., unpaid, out-of-home activities) reported that very few programs specifically catered to an ageing cohort or had the skills and resources to appropriately provide age-specific support [16]. A range of fears and barriers that older people with intellectual disability working in sheltered employment face in the absence of any formal retirement planning strategy, mechanisms, or funded services has also been reported [17]. In addition, a small group of older Australians with intellectual disability, who led fairly active lives, did not envisage retiring anytime soon, perceiving their current active lifestyle as workers or as volunteers as one they wanted to maintain [18]. Other studies reported negative views of retirement among older sheltered employment workers, who feared losing touch with work friends, missing the sense of achievement they gained from work, and having nothing to do in retirement [10,19].

These studies highlighted the inadequacy of service support and staff skills concerning retirement, as well as the unpreparedness and negative attitudes of many people with intellectual disability around retirement. In this context, it was important for researchers to further examine the few existing Australian retirement-specific programs for sheltered employment workers. Two such programs, both initially set up during the early 2000s, were evaluated [10]. Greenacres Retirement Options (GRO) was funded by the New South Wales Government and created as a centre-based retirement day program to cater for a large cohort of ageing workers at Greenacres’ sheltered employment services. Activities offered were diverse and included centre-based and more sedentary activities, such as crafts and games, and outings to shopping centres and local attractions, all as part of a group of older people with a disability. In a few cases, there was the possibility of community volunteering in a mainstream setting. Initial reports indicated a low interest with only a few participants, presumably reflecting the negative attitudes toward retirement noted above. However, the numbers increased once word spread about how much fun retirement could be, how much less pressure it placed on underlying health problems, and that it did not preclude keeping established friendships. This finding suggested that once the older workers with intellectual disability have direct experience of meaningful retirement activities, their attitude to retirement may become more positive.

Minda Retirement Lifestyle Options was funded by the South Australian Government as a pilot and consisted of a mixture of day program-, staying-at-home-, and community-based options. This variety of activities mirrors what many older people without a lifelong disability might do once retired, except that the Minda program mostly involved older people with a disability engaging in activities together. Similar to the Greenacres retirement program, Minda provided transport to its members and allowed people with intellectual disability to keep working part-time while attending the retirement program part-time. The small-scale research evaluation showed that the participants reported enjoyment of the program and the balanced retirement lifestyle that it offered [9], thus demonstrating the benefits of supported activities in retirement. The program model that resulted from the pilot was adopted by Minda and consisted of six steps: (1) lifelong planning for retirement, (2) retirement recognition, (3) retirement reason, (4) retirement planning, (5) retirement transition, and (6) retirement lifestyle.

4.1.1. Australian Government Transition to Retirement (TTR) Pilot Study

Partly due to the focus on retirement arising from Australian research and the success of the Greenacres and Minda programs, in 2010, the Australian government funded a TTR pilot study. This project operated between October 2010 and October 2011 and was subject to an independent evaluation [20]. The pilot had three sites and consisted of education, planning, and retirement-linking activities with older people with a disability who were employed at two sheltered workshops—a third site involved community education workshops presented by another sheltered workshop provider. The findings from these small-scale pilots showed that older people with a disability can be prepared for and participate in retirement with the right kind of ongoing support and that planning for retirement needs to be a lifelong venture rather than a last-minute consideration [20]. The pilots also found that older people with intellectual disability need specialised and intensive support transition to retirement, and while sheltered workshops have a role in helping people prepare for retirement, they are perhaps not the right service model to support the transition. Other key findings indicate the differing capacity of community groups to support older people with intellectual disability and, for those living in rural areas, how the lack of community activities creates barriers to participation.

4.1.2. Transition to Retirement Partnership Project

This 3-year research project trialed an approach to transitioning to retirement using a technique termed active mentoring to enable older people with intellectual disability to participate in mainstream community groups or volunteering activities alongside retirees without a disability [9]. The approach combined the methods of active support [21] and co-worker training [22], where a person with intellectual disability is supported by volunteer (unpaid) mentors from the community group rather than an external paid “expert”. The mentor provides support or acts as a “participation bridge” to increase active participation and social inclusion, rather than the person with a disability being a passive observer. A distinctive feature of this applied research project was the specific focus on socially inclusive retirement activities. Another key difference was the study used a more robust research design—a matched comparison group of participants who continued to work in sheltered employment and did not join a community group [23].

Over the course of the 3-year research project, 29 older people with a disability were supported to replace one day per week of work at their sheltered workshop with a day of participating in a community or volunteering group in their local area [23]. This gradual transition toward retirement meant that the participants continued to work part-time while they began to develop a socially inclusive retirement lifestyle. Notably, planning for this gradual transition was intervention-specific and did not cover broader lifestyle issues, such as health, finances, relationships, and housing. Initial difficulties with recruitment were overcome once the first participants reported positively to their peers about the enjoyable nature of their new retirement activities.

Community groups for seniors that some participants attended included a senior’s choir, a community garden, lawn bowls, and Men’s Sheds (where retired men usually get together and do woodwork and metalwork). Volunteering groups that some participants joined included a charity store, an aviation museum, and a cat protection group. Overall, 86% of the intervention participants went to their community group each week for a minimum of 26 weeks, with most continuing to attend long after the research project was finished [23,24]. In summary, “The results demonstrate that participation in mainstream community groups with support from trained mentors is a viable option for developing a retirement lifestyle for older individuals with disability” [23]. Using a pre-post research design, the study also demonstrated that the participants were significantly more socially satisfied after the project than the matched comparison group, who did not reduce their days at work or join a community or volunteer group. Compared to the baseline, the intervention group reduced their weekly work hours, experienced significantly increased community participation, and made several new friends.

Most importantly, this model appears feasible for widespread implementation to support many older people with intellectual disability to transition to retirement. However, it is important to note that none of the research participants had severe-profound intellectual disability, and none had any significant self-care or behaviour support needs, so the results may not generalise to these cohorts. Further, how to convince governments to fund such programs on an ongoing basis as a part of a wider suite of funded support for people with all types of disabilities has yet to be solved. Indeed, trying to embed such innovative and individualised programs into the new individualised (as opposed to block funding of services) funding arrangements in Australia, called the National Disability Insurance Scheme (NDIS), remains a challenge.

4.1.3. Department of Social Services (DSS) Funded Transition to Retirement Case Management Program

Between March 2013 and December 2014, Commonwealth Rehabilitation Services (CRS) was funded to provide transition to retirement information and opportunities to the older sheltered employment workforce across Australia. This program used a case-management approach and was partly based on the TTR program’s logic model, outlined in a practice manual titled Transition to Retirement: A Guide to Inclusive Practice [24]. Across Australian sheltered employment services, 2832 workers over the age of 55 were eligible to participate. The entry age was set at 55, as CRS recognised that age was less of an indicator of retirement than were issues associated with health and function. The evaluation showed that 429 workers developed a retirement plan and participated in a range of retirement activities, while 75 workers retired fully [7]. Similar to all other programs described in this paper, the CRS project concluded that (1) the sheltered employment service provider was a pivotal partner in providing transition to retirement support and education to the individual and any involved family members; (2) local communities do require support to enhance their disability awareness and acceptance of older adults with a disability; (3) retirement planning must begin earlier in the person’s life; and (4) funded and individualised case-management supports are needed to facilitate the transition to retirement of people with a disability. Several participants in the CRS project were followed up and reported predominantly positive outcomes, including more positive views about retirement [7]. That is, having been exposed to positive retirement possibilities and experiences, people with reservations or negative views about retirement may change their outlook.

4.2. Transition to Retirement from Mainstream Employment

A recent Australian study explored the retirement experiences of older adults with a moderate intellectual disability, aged 43–62 years (average 57), who each had more than two decades of working in mainstream employment and had been retired for between 2 months and 4.5 years [25]. Following work-related difficulties experienced with health or transport, retirement often occurred as a way out. The decision to retire was made with family members and disability provider staff, with differing degrees of involvement by the person with intellectual disability. Participants had mixed views about their lifestyle in retirement. Most had no regular structured activities, and those that did all accessed segregated programs for people with a disability. Several people reported being bored and having too little to do. This situation may represent the existing reality for retirees from mainstream employment in the absence of specific support for developing a more active and socially inclusive retirement lifestyle. These findings have been echoed in Norwegian research, where the process of retirement was abrupt due to factors such as declining health [26].

In response to these issues, an Australian intervention model, Keeping Active, similar to the active mentoring approach mentioned previously, was developed. The aim was to facilitate independent participation in mainstream community activities as part of developing a retirement lifestyle for people with intellectual disability transitioning from mainstream employment [27]. This approach adapted the employment support strategies used by the DES Jobsupport program described earlier in this paper and differed from the programs mentioned so far, which were all developed for older workers retiring from sheltered employment. The Keeping Active intervention supported 19 of 22 (86%) participants to independently engage in a mainstream leisure group or customised volunteering role of their choice, with 77% of these continuing to participate in their selected activity after 12 months. The study evaluation included a randomised controlled trial, showing that compared to those in a wait-list control group (n = 17), intervention participants (n = 12) had a significantly increased level of independent mainstream community group or volunteering participation after 13 weeks [27]. These findings highlight the potential for existing employment support strategies to be applied to supporting older workers with intellectual disability in their preparation for and transition to retirement from mainstream employment.

Working participants in the Keeping Active intervention were in receipt of DES ongoing support funding. A key issue for accessing disability support for retiring from employment supported by a DES is that DES funding is limited to activities of finding a job and providing the necessary training and support to maintain employment. Funding ceases as soon as a job ends. If DES staff are to provide support for non-work social activities or volunteering, a different source of disability funding is needed. The NDIS provides such funding for eligible individuals, but the amount of funding proved insufficient to pay for the skilled support and lacked the flexibility to adjust to the changing levels of support needed that is central to the Keeping Active approach. While most disability supports in Australia are now NDIS funded, including sheltered employment, DES is external to the NDIS, and the DES participants requiring non-work disability support need to apply for NDIS. This issue presents a potential gap in formal support at retirement for those exiting mainstream employment [28].

Just as research on transitioning to retirement from sheltered employment indicated the need for individualised case-management supports [7,29], retiree case studies in the intervention study suggested that case-management activities were also required for workers in mainstream employment [30]. Often, the support needed went beyond the original program’s design to include advocating for the participant within the family context and liaising with supported living services to plan appointments. This study also reported that the Keeping Active program being delivered and funded through DES was a key factor in supporting a participant’s retirement adjustment [30]. It seems critical, therefore, that forward planning for workers with intellectual disability in mainstream employment considers the worker’s existing informal and formal supports and the impact of a sudden change in employment circumstances that prompts retirement and a related loss of DES funding.

5. Finances and Retirement

A financial readiness to retire (e.g., through retirement savings) is a strong theme in mainstream retirement research [31] but has received little attention in the intellectual disability literature. Crucially, Australians with a disability working in sheltered employment had little or no opportunity to save for retirement because of low wages [32]. Most individuals in the CRS study reported they had a similar amount of money in retirement as when working in sheltered employment [7]. Among workers in sheltered employment, there seems to be little awareness of the financial side of planning for retirement. For example, very few participants with intellectual disability in the retirement research mentioned finances as an issue [10,19,31,32], and there was almost no evidence of financial planning for retirement. Interestingly, in the CRS study, participants did report a somewhat clearer understanding of the financial side of retirement, suggesting that the information and support they received throughout the project may have enhanced their comprehension of these issues [7].

By contrast, there is emerging evidence that awareness of financial issues regarding retirement may differ for at least some people with intellectual disability working in mainstream employment [28,31]. Their financial situation is different due to their much higher wages and because they typically qualify for the compulsory employer-funded retirement savings scheme, known as “superannuation”, in Australia. These workers also seem to be more aware of at least the basic financial consequences of retirement, such as a loss of wages, although they had a less clear understanding of the details concerning accessing the disability support pension and superannuation once they retire [25,31]. Involvement of family members in the person’s retirement planning focused on two key aspects: for some, it was the need for guidance in understanding their individual financial circumstances; for others, it was the financial interdependence between the worker and family members that often acted as a barrier to retirement if the family was reliant on the income of the worker with intellectual disability to contribute to expenses [30].

6. Age of Retirement

There is no fixed retirement age in Australia. Available data for the general community show that, for individuals aged 45 and over, the average retirement age was 59.3 years for men and 54 years for women [33]. No Australian national data for people with intellectual disability are currently available that show their age at retirement. However, the transition to retirement intervention participants in the transition to retirement partnership project were aged from 46 to 72 years [23]. These individuals were all currently working in sheltered employment but reduced their workdays and/or hours in preparation for eventual full retirement. The age range represented reveals several important policy-relevant findings. Firstly, some people with intellectual disability choose to work many years beyond the notional retirement age of 65, a finding echoed elsewhere [10]. Secondly, some people are ready to or need to retire in their late 40s or early 50s. Employment and retirement policies for people with intellectual disability must accommodate this range of individual differences, and practitioners should retain an individual focus through person-centred retirement planning.

For Australian workers who require DES support to obtain mainstream employment, eligibility for registration in DES ceases when the person reaches the age threshold for the age pension (currently 67 years). An employed worker can continue receiving ongoing support services beyond the age threshold; however, if a job ends or if the person’s individual circumstances change and their current job is no longer a good fit for them, they cannot register for DES assistance in finding a new job. While eligibility for the age pension may not have financial significance for workers on the DSP, this policy establishes the age pension threshold as the retirement age for DES services, thus impacting self-determination in retirement timing.

7. Time Course of Retirement

A US study reported that some people with intellectual disability may retire suddenly and change from working to not working at all, whereas others prefer to transition to retirement by gradually reducing hours or days of work [34]. The time course of retirement by people with intellectual disability has not been investigated thoroughly internationally, although Australian studies suggest that a gradual transition is common. For instance, the transition to retirement partnership project focused on dropping only one day of work per week initially while continuing to work part-time [23]. In addition, 58% of the intervention group participants were already working part-time with a sheltered employment provider, even before they entered the research project. Of course, some people will be forced into abrupt retirement due to a sudden health crisis or another event beyond their control that affects their ability or opportunity to work, even if their preference is a gradual transition to retirement. Currently, we know little about this cohort and their experiences beyond the case examples of people retiring from mainstream employment [25,30].

A recent US study reported data on work hours that was consistent with sudden retirement by older workers with intellectual and developmental disabilities [35]. Further, for those who did continue working after 65 years of age, the proportion in mainstream employment dropped close to zero after 65, whereas some carried on working in sheltered employment. Whether these differences were based on self-determination, the encouragement of others or inertia remains open to conjecture without further studies. It may be that the differences between the disability employment service frameworks in Australia and the US can explain these seemingly dissimilar findings; however, at present, there is too little information to reach any firm conclusions.

8. Self-Determination about Retirement

Mixed findings have been reported in Australia regarding the degree of self-determination exercised about the decision to retire. In those first Australian studies, workers with intellectual disability in sheltered employment did not make their own decisions about retirement [32]. However, individuals in the CRS study did report making the decision for themselves, although the authors note that there may have been substantial encouragement to retire from the sheltered employment provider [7]. A change in health status has also been reported as a key driver for retirement [36]. Taken together, these findings suggest that structured retirement information and support, such as the CRS project, may enhance self-determination.

The small amount of information available about retirement from mainstream employment revealed a mixed picture, with some people with intellectual disability reporting that they made the decision to retire and others saying that someone else decided for them [25]. Push factors, such as declining health and job displacement, were more central to the timing of retirement than the pull of anticipated leisure time or retirement activities for workers and retirees. Reliance on the support of others to gain or maintain employment constrained a worker’s choice to remain in the workforce; for example, where ageing parents were no longer able to provide transport to work was also reported [30]. Enhancing self-determination in retirement planning requires consideration of the workplace accommodations that may be necessary for age-related changes in health and functioning [37], as well as planning for age-related changes in family and home support.

9. Conclusions

Based on the modest amount of available research in Australia, there seem to be several consistent findings. Firstly, most individuals with intellectual disability have, at best, a basic understanding of retirement [32], although there is some evidence that, with information and support, a better understanding can be achieved [7]. Secondly, the prevailing initial view about retirement seems to be negative, with retirement often seen to mean a loss of meaningful activity (i.e., work) and no contact with friends from work [10,18,19,32]. However, here too, the provision of information and support, together with the experience of enjoyable retirement activities, has been found to lead to a much more positive view of retirement by people with intellectual disability and by family members [7,10]. Thirdly, there was little awareness of the activities and social connections that are potentially available in retirement, especially through participation in mainstream activities. Where activities were suggested by people with intellectual disability, family members, or service providers, these were mainly in segregated, disability-specific programs [19]; however, the availability of these services was seen as limited [32]. Indeed, a recent study from the US described how retirees from sheltered employment transitioned to a day program delivered in a different part of the same building of the sheltered employment setting they retired from [8]. It is clear, however, that people approaching retirement can be supported to experience and learn about the activities available to them in retirement. Intervention studies have demonstrated that older workers and retirees with intellectual disability can engage independently in mainstream groups and volunteering roles when evidenced-based strategies are applied [23,27]. Fourthly, decisions about retirement have mostly been made by others, with little evidence of or support for self-determined retirement choices in the past [32]; however, there is recent evidence of at least partial self-determination in the context of structured retirement interventions [7]. One study indicates that at least some retirees with intellectual disability from mainstream employment made their own decision to retire [28]. However, disability service factors, such as the need for residents to leave unstaffed disability group homes during the day, appear to influence the continued attendance at sheltered employment, even when the individual’s needs would be better served by retirement [32]. Fifthly, the available evidence indicates a need for case-management-type individualised retirement planning that considers factors such as the worker’s perception of retirement and knowledge of options, their financial circumstances, their informal and formal supports, and the local context of funding for employment and non-work disability supports. Finally, almost all the research has focused on people retiring from sheltered employment, with only one current Australian project examining retirement for people with intellectual disability from mainstream employment [25,27,28] and one of a US descriptive study [8].

10. Recommendations for Future Research

This paper has highlighted that there are some things that we know; however, there are many more areas where knowledge is limited, and major research gaps remain. These research gaps need to be filled in order to inform the development of a retirement policy for people with intellectual disability that is aligned to the global policy goals but nuanced enough to enable the required supports to be understood and then applied to people with diverse support needs. There is a complete absence of reported research about retirement and intellectual disability from non-western and developing nations, where the absence of a social welfare and income support system (e.g., age or disability pension) means that Western notions of retirement may not apply. The Australian research findings we have reported are encouraging, especially regarding socially inclusive participation; however, many more issues remain to be examined. It should also be noted that the participants in the intervention and descriptive studies cited in this paper self-selected to participate, and so the results are not generalisable to everyone with intellectual disability who has experienced paid work. Apart from small-scale studies linked to specific retirement programs, there is little or no representative information about even very basic issues, such as the age of retirement and the proportion of people who retire suddenly versus gradually. The research we have described focused mainly on planning for and engaging in meaningful community activities in retirement. Other aspects of retirement and retirement planning, such as health, relationships, and finances, have received less attention. Crucially, we know little about the large numbers of people with intellectual disability who are outside of the disability service system and whose retirement processes and outcomes remain unknown. Below, we have set out a list of potential research questions for future study. These questions should be examined in the context of both sheltered and mainstream employment in Australia and elsewhere.

• What factors affect how people with intellectual disability understand retirement and their attitude to it?
• At what age do people with intellectual disability retire?
• What proportion of people with intellectual disability continue to work past the nominal retirement age of 65? Why do they keep working? Who makes this decision?
• What factors are associated with retirement by people with intellectual disability at different ages?
• Is the transition to retirement by people with intellectual disability sudden or gradual?
• What is the incidence of older people with intellectual disability who may consider themselves unemployed rather than retired, and to what extent do they re-enter the workforce, if at all?
• Who decides when and how people with intellectual disability retire? Does guardianship status affect who makes such decisions?
• Do people with intellectual disability engage in retirement planning? If so, when, how, with what support, and in relation to what issues?
• What retirement-related factors are associated with a post-retirement quality of life?
• What financial issues, including factors such as job-related health insurance, affect retirement, and how does retirement affect the income of people with intellectual disability in different parts of the world?
• Is retirement different for people with intellectual disability in mainstream jobs than for those in sheltered employment?
• What workplace accommodations and supports are effective in enabling older workers with intellectual disability to keep working if they want to?