Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities

Finding cost-effective, individually meaningful, inclusive, and evidence-based strategies to counter known, and impending, issues facing people with intellectual and developmental disabilities are important to those individuals, practitioners, and researchers. Aging and retirement – whether from mainstream employment or sheltered employment – continues to be a growing area of concern for people with intellectual and developmental disabilities, their families, service providers, policy makers, and applied researchers (Bigby et al., 2011). The Transition to Retirement (TTR) program, developed in Australia, offers an exemplar for such goals (Stancliffe et al., 2013). This article describes the TTR program from its inception through to its application within an Australian disability service, using a personal story to illustrate how the above research-to-practice goals can be achieved.

Program Inception

At the outset, this program evolved from the rapidly changing needs of an ageing workforce, many of whom had worked for decades in the same sheltered workshop. As university researchers, we partnered with a disability service provider and developed the idea to support interested people to participate in similar activities that non-disabled retirees might participate in: mainstream volunteering or joining a community group. The key goal was to give people an opportunity to keep working, but at reduced hours, and then gradually transition to a more socially-inclusive retirement at a time of their choosing.

We developed a way of providing natural supports from existing community group members acting as mentors rather than external experts providing support.

Active Mentoring

To help maximize social inclusion, we developed a way of providing natural supports from existing community group members acting as mentors rather than external experts providing support. Active mentoring was an approach to teaching mentors from the mainstream community and/or volunteer groups how to provide social support, how to promote participation in the group's activities, and how to better communicate with people with intellectual and developmental disabilities (Wilson et al., 2010). That is, the researchers taught the mentors how to provide the supports to the individual with intellectual and developmental disabilities, rather than an external disability caregiver directly doing this. Most importantly, active mentoring involved the researchers fading the support to the mentors over a six-month period, so that eventually the person with intellectual and developmental disabilities could attend and participate in the group without any direct input from the researchers.

The TTR Program

The TTR program is described in detail in the guide to inclusive practice published in 2013 (see Figure 1). (All royalties from the manual are donated to the Australian Foundation for Disability.)

The program has two areas of focus: community-based networking and constructing the reality with an individual. The first involves a program coordinator conducting routine and targeted networking activities within communities. This networking involves promoting the concept of retirement for older people with intellectual and developmental disabilities, both within the disability and the general community. The second area of focus is with individuals and has five key parts:

1. Person-centered retirement planning
2. Locating suitable groups
3. Mapping a new routine
4. Recruiting and training mentors
5. Monitoring with ongoing support

Figure 2 is from the TTR Guide to Inclusive Practice (Stancliffe et al., 2013) and illustrates these five steps with descriptions of what each step involves and which chapter of the Guide contains the detail.

The Guide also contains video clips telling the story of 6 participants who each joined a different type of community group. These short videos can provide role models and examples of retirement activities to help people think about what they would like to do as they transition to retirement. The videos are also useful for families, disability staff and community groups to help them picture the situation and think about its value.

Benefits for Participants

Participants chose a diverse range of volunteer and interest groups, with 27 individuals each choosing a separate group in which to participate. Several of them chose similar types of groups, such as men’s sheds or seniors’ groups. Others chose to volunteer at a community soup kitchen and nursery, a museum, and an animal protection society, among others. Some joined choirs, and some participated in exercise, social, and bowling clubs.

Importantly, these mainstream groups already existed in local communities, were very low cost for participants, and met regularly (weekly or more often). Research showed that the TTR program was very feasible, with 93% of participants joining a community group and 86% attending weekly for the full six months of the research project (and almost all continued to go long after the research was completed) (Stancliffe et al., 2015).After six months of going to their community group, participants:

• were more socially satisfied (reported having friends and social support from friends),
• made several new friends/acquaintances they could name and spent more time with them,
• reduced their weekly work hours (3 people retired fully),
• had a more relaxed schedule on the day they went to their community group,
• joined in the activities of the group, including a shared morning tea, and
• experienced much more socially inclusive community participation.

Not only did people with intellectual and developmental disabilities benefit, but also the mentors and community groups gained a lot from the program. For instance, one mentor said “… it’s amazing to see a person in this kind of situation, how well she adjusted and I think it’s great, we enjoyed having her … I hope she stays with us for a very long time.” (Wilson et al., 2013). Another mentor said, “… the whole [thrift shop] shelving gets unpacked and restacked quite nicely…so you always know when [she] has been, it’s beautiful, she fixes it up nicely…she has that sense of responsibility around it.”

Susan’s retirement experience

About Susan: I am a 55-year-old lady and I have a disability called Apert Syndrome, which effects most parts of the body, including hands, feet, and face. I used to work in a kitchen with other people who had disabilities for 30 years. I had to retire from working in the kitchen in 2015 due to health issues. I also do sewing twice a week and I also do volunteering at my local hospital. I also had a partner, John. We met at our local sports club, and we were together for 34 years, but he recently passed away. We loved being with each other. We did everything together.

Where and how many days were you working before you got involved in the TTR program?

In the kitchen at a disability service, 3 to 4 days per week.

What interested you in the TTR program?

I heard about it through the disability service where I lived and it sounded good.

Did you know what you wanted to do in the TTR program or did Tracey, or others, help you decide what you'd like to do?

Tracey helped me.

When did you started volunteering?

10 years ago, in 2012.

How did you feel when you started volunteering at the hospital?

Good, it made me feel happy. I got to do different things. I can’t wait to go back!

What helped you to decide to fully retire from work?

I had to retire because of my health.

How many days a week do you volunteer now?

One day. I also do sewing.

What is the best thing about your volunteering role?

Meeting other people and doing hospital work.

What is the best thing about being retired?

More time to do things that make me happy, such as sewing.

A flow chart detailing the Transition to Retirement program. The process starts with promoting retirement to older workers with long-term disability. The following 5 steps are activities focused on a specific individual with disability

1. Planning a retirement lifestyle.
   1. A person with disability joins the TTR program and takes part in an individual retirement lifestyle planning meeting.
2. Locating a suitable mainstream community or volunteering group.
   1. Such a group should match the person’s interests and be accessible. Person with disability makes an introductory visit to the group with the TTR coordinator.
3. Mapping a new routine.
   1. Person with disability drops one day of work a week and instead attends the group on that day (some people swap a workday with an existing day off or only take a half day off work). The new routine involves changes at home, work and at the community group. There is a specific focus on travel, activities at the group, and social support. TTR coordinator provides initial support.
4. Recruiting and training mentors.
   1. Members of the group volunteer to be mentors to support the person with a disability to be an active, participating member of the group. Mentors and trained by the TTR coordinator using group disability interaction training and individual hands-on training.
   2. Right of return to previous work hours (up to 12 months)
5. Monitoring and ongoing support
   1. The TTR coordinator gradually reduces support at the group, but continues to monitor the situation via regular phone calls and visits. As-needed support is given to deal with changes and any problems that arise. Support is provided to the participant, the community group and caregivers. Monitoring and ongoing support continue indefinitely. Annual retirement planning meetings are held to review progress and plan additional retirement activities.
   2. Right of return to previous work hours (up to 12 months)

Conclusion

Readers can use the information in the Transition to Retirement Guide to do something similar in their local community. We recommend starting with Step 1, from Figure 1, by promoting and increasing awareness of retirement (videos can prompt discussion) and scoping the existence and range of community groups in their local area. This program is not only feasible, but also highly cost-effective in the long term once the up-front work has been completed in an individualized and systematic manner. Disability funding systems should reward socially inclusive and cost-effective outcomes such as this program to ensure its viability into the future. This is critical as recent Australian experiences show that once funding is insufficient, only those who can participate independently can continue, leaving those with greater support needs with fewer inclusive opportunities.

Related Content

Retiring McDonald's employee, 50, blazed a path for others with Down syndrome

In 2018, Russell O’Grady retired from his job at a Sydney, Australia McDonald’s restaurant after 32 years.