Supporting People as the Age
Supporting a Socially Inclusive Retirement Lifestyle
After Paige retired, she joined an inclusive mainstream exercise group at the seniors’ center in her old neighborhood. She found this group with her direct support professional (DSP) after she quit a dance group with younger people who had different personalities and interests from her. She enjoys joking around with people in her senior group and feels like she belongs (Hall & Stancliffe, 2024 ). Paige’s involvement highlights the positive impact of living an active, socially inclusive life.
Living a socially inclusive life is when someone participates in activities that are:
- meaningful to them,
- perform valuable roles, and
- have reciprocal relationships with their friends, family members, and community.
This social inclusion leads to more friendships, community involvement, wellbeing, happiness, and a sense of belonging. DSPs are essential supports for older adults with IDD to develop and maintain social inclusion in their retirement years. DSPs are increasingly important as people age because support from family often becomes less available due to, for example, parental illness or death. You can help older workers and retired adults to actively participate in community groups they enjoy and maintain relationships with family, friends, and community members.
Tim enjoys meeting and talking to people. He really loves his job as usher at his church.
Retirement is when someone leaves paid work all at once or gradually by reducing the number of days or hours they work. Gradual retirement is often called transition to retirement. Adults with IDD may retire earlier than others due to their health and mobility problems, premature aging, or lack of work opportunities and accommodations. Retirement from work is different than when someone stops attending their day program, which already offers leisure and volunteer activities. Retirement from work includes a change in income and status as a paid worker. Many people also lose social connections with their friends from work. Retirement planning is important to create a smooth transition from work to life in retirement.
Retirement Planning
Adults with IDD may experience sudden retirement because of a health situation, unexpected job loss, or being left out of their retirement planning. This can cause the person distress due to their lack of control, the sudden change in their routine and social connections, not having activities and related services set up, and their concerns about being bored. It is also difficult to retire and have another big life change at the same time, such as a caregiver or guardianship change, death of a parent, or move to a new community. A smooth, planned transition to retirement allows people with IDD to feel in control and more easily adjust to a changed lifestyle.
Planning for retirement begins with education. Many people with IDD do not know what retirement is or what it could look like for them. They are often concerned that they will end up sitting at home all alone with nothing to do. They need to hear positive messages about retirement and find out what they could do by learning from role models, hearing stories, and talking about ideas specific to their interests. Adults with IDD may decide to continue working in older age. They may decide to retire at a specific age, number of years worked, once they have slowed down, or when they’re no longer able to do the job. When planning, the person and the people who support them should discuss topics like when to retire, finances, activities, social connections, staying at home, meal planning, transportation, changes in supports and services, and how to celebrate!
Page enjoys meeting other retirees at the Community Center
Though the worker is central in their retirement planning, their employer, family, friends, and DSPs may also be involved to provide support and ideas. DSPs are often affected directly by the person’s retirement. Employers may provide job accommodations, recognize signs that someone is ready to retire, and cut work hours. Family and friends may help plan, share ideas and resources, and provide direct support if able. As someone involved in their daily lives, you may be more involved in providing direct supports such as teaching workers about retirement, having retirement conversations, communicating with family and employers, planning activities, developing new schedules and routines, teaching new skills, and helping them join new groups in the community.
What Will Retired Adults with IDD Do All Day?
Many people with IDD go to disability day programs in retirement, but this can be difficult for those who have experienced more social inclusion in their community through competitive employment. Providing support to keep in touch with their friends from work is a great idea. There are also retirement programs where people attend events and do special activities in the community. Some retirees participate in disability-specific sports teams, social clubs, self-advocacy groups, camps, or vacations. Retirement is a time for some to find purpose and enjoyment in volunteer work or a part-time job. Retirees may spend more time at home or connect with their family and friends more often. Retired people may also enjoy joining new groups in the community to participate in meaningful activities, make new friends, and live a more socially inclusive life.
To support workers and retirees with IDD to join inclusive community groups, start planning now! Retired people with IDD may continue to participate in mainstream groups they joined when they were working or even younger. If workers cut their hours or already work part-time, they can join a group during the day when they are not working. Having activities and relationships already established can support a smooth transition to retirement, but joining (more) groups in retirement is also possible. You may need to be creative and flexible. It’s okay to explore, try a group, and then change groups if it’s not a good fit. Sometimes, it’s nice for people to have a companion to go with, but having a whole group of adults with IDD attend may limit interactions with others. When one or two people join a group, they are more likely to get to know others and be accepted as unique individuals. We have developed some steps that supporters like DSPs can follow to ensure a person with IDD has a smooth transition to retirement.
Roger Stancliff and Sarah Hall
Steps to Join an Inclusive Community Group
One proven way to help workers with IDD join inclusive groups in the community is outlined in the guidebook Transition to Retirement: A Guide to Inclusive Practice (Stancliffe et al., 2013). In 2023, Stancliffe and colleagues outlined adaptations to this guidebook for the current U.S. context. These resources may be used together to better understand the following steps and provide examples to help adults with IDD join community groups.
Step 1: Promote retirement to workers with IDD. This includes teaching them about retirement but also providing positive messages about retirement. You might use role models, stories, videos, and conversations with multiple examples of retirement lifestyles.
Step 2: Explore the community to find potential groups. Suitable groups have welcoming leaders and members, are affordable, potentially meet year-round, and consistently meet on the same day, time, and location.
Step 3: Plan. The Transition to Retirement guide has a form for the first retirement planning meeting, but you may need many conversations to think through and explore options. The meeting includes the adult with IDD and those who support them. First, talk about the hobbies and activities they enjoyed in the past. Then, discuss their current interests, hobbies, and activities as well as their skills, personality, and support needs that may impact participation and enjoyment in a group. Lastly, talk about the type of group they would like to join in the future.
Step 4: Find a group. You may lead this part while getting ideas and advice from others. Consider the cost, schedule, location, and accessibility of the group. See if the group is a good match for the person by considering their interests, age, ability, gender, and the group culture (like how they dress and interact, or what language is usually spoken). Introduce the person to the group leaders and members. Help them learn the activities, routines, and norms of the group.
Step 5: Set a new routine. You may be involved in developing new routines within the group, at work, and at home. If the person still works part time, you can ensure they don’t work on the day the group meets. At the group, you may ask leaders or members to support the person with specific tasks and find a valuable role in the group (e.g., setting up chairs, cleaning tables, bringing a music playlist). You can support the adult to learn and follow the group’s routines and norms so they become more accepted. Family or DSPs at their home will also need to adjust to new routines. You or family members may give reminders, change transportation, provide money for fees, set up communication between the group and home, check in with the group, and change staff shifts and responsibilities. You may also help the adult with IDD to learn how to travel to the group, pick appropriate clothes, develop communication tools, and learn new skills and social etiquette.
Step 6: Recruit and train mentors. Mentors are people in the group who are willing to support the person with IDD. You may have one main mentor who is a good match for the person, but they may feel less pressure if others are willing to provide support as well. You can teach mentors about specific disabilities, respectful language, assistance needed, supporting independence, and problem-solving. Modeling support while explaining what you are doing and teaching how the person communicates is also helpful.
Step 7: Monitor and provide ongoing support. After supporting the person for a while, depending on their support needs and confidence, you can begin to reduce your support at the group. You will then monitor their participation by communicating with group leaders and mentors through regular calls/emails and occasional check-ins at the group. Ongoing support may include assistance through big changes or crises such as leadership or activity changes, death of a group member or parent, staff turnover, change in residence, or the health and mobility of the adult. Even small concerns, which group members may not readily raise, could also make a big difference in the person’s social inclusion in their group.
As a DSP, you can support people with IDD to join a community group by promoting retirement, identifying potential groups, leading retirement planning, finding a mainstream group that is a good fit for the person, recruiting and training mentors in the group to provide natural support, monitoring their participation, and providing ongoing support.
Conclusion
Supporting older workers and retired adults with IDD to join and actively participate in mainstream community groups helps them to live a more socially inclusive retirement lifestyle. As a DSP, you can support people with IDD to join a community group by promoting retirement, identifying potential groups, leading retirement planning, finding a mainstream group that is a good fit for the person, recruiting and training mentors in the group to provide natural support, monitoring their participation, and providing ongoing support. This support is meaningful because when retired people with IDD participate in inclusive groups in their community, they have a greater quality of life and sense of belonging.
References
Hall, S. A., & Stancliffe, R. J. (2024). Participation in mainstream community groups by older United States adults with intellectual and developmental disabilities: A multiple case study. Journal of Intellectual & Developmental Disability, 49(4), 438–451. https://doi.org/10.3109/13668250.2024.2340518
Stancliffe, R. J., Wilson, N. J., Gambin, N., Bigby, C., & Balandin, S. (2013). Transition to retirement: A guide to inclusive practice. Sydney University Press. Available as an eBook
Stancliffe, R. J., Hall, S. A., & Anderson, L. L. (2023). Transition to retirement: A guide to inclusive practice: Adaptations for the current U.S. context [Website]. Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota. https://ici.umn.edu/products/QSWHGLI1TnuYC2ADaAE9Hg