Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities
The Next Transition: Support and Considerations for Life in Retirement
Employees with intellectual and developmental disabilities (IDD) work in a variety of jobs and industries. They work in offices, factories, schools, hospitals, restaurants, stores, and more. They are valuable members of the workforce and contribute to the economy and their communities. Some individuals may use formal supports such as a job coach or work with a provider agency, while many others have no formal supports. The number of individuals with IDD working in competitive, integrated employment in the community has nearly tripled since 1990 (Winsor et al., 2021), while the number working in facility-based employment declined rapidly in the last decade. Data from the 2018 American Community Survey (ACS) indicate that approximately 29% of working-age adults with a cognitive disability are employed (Erickson et al., 2021). There are also growing numbers of aging adults leaving the workforce and entering their retirement years. The retirement period for adults with IDD is not fully understood by services and support systems. By contrast, retirement research and services for adults without disabilities are more robust, offering a broad base of tools, strategies, and policy approaches. The rise of paid employment for adults with IDD in the last generation is ushering in an increase of retirees with IDD. This is a new kind of life transition for which disability policymakers and service providers have not fully prepared.
Employment Over Time
For more than 40 years, supported employment has been an evidenced-based practice to support individuals with IDD in becoming employed and performing their duties in an integrated work setting. There are different forms of supported employment, including self-employment and customized employment. Customized employment is a personalized arrangement between a job candidate and an employer that meets their mutual needs. The first customized employment grant was implemented in 2001 through the Office of Disability Employment Policy (U.S. Department of Labor, n.d.). Supported and customized employment practices have increased the rate of competitive, integrated employment (CIE) in the United States. CIE is defined as full- or part-time employment for people with disabilities that is compensated at or above minimum wage, is provided with the same benefits as similar positions, is in a location with workers without disabilities and can include opportunities for advancement (Workforce Innovation and Opportunity Act, 2014). More simply, CIE is real jobs for real pay and it represents equality in the workplace, with the same opportunities to advance made available to workers with and without disabilities. These evidence-based practices, in concert with federal and state policies, have created the framework for improving the rate of employment for people with disabilities.
Paid employment for adults with IDD occurs in other settings, too. In addition to CIE, there are many adults who are in paid employment in facility-based employment programs. These programs hire and support workers with IDD to do work in a separate location. Wages for workers in these settings vary. Some workers with IDD may be paid minimum wage, but there are also many who are paid a sub-minimum wage. There are also forms of group employment that may occur in the community or within a facility-based program, historically referred to as sheltered workshops. These work settings involve paid employment, and the number of older adults retiring from group and facility-based employment settings is increasing as well.
It is difficult to fully estimate the numbers of adults with IDD who are in paid employment and those who are retiring. Figure 1 displays numbers of working-age adults who are receiving formal services from a state IDD agency. This represents only a small portion of the total number of adults with IDD in the United States. Data for this figure was collected by the Institute for Community Inclusion’s National Survey of State Intellectual and Developmental Disabilities Agencies’ Employment and Day Services. This 2018 survey also estimates there are approximately 641,408 adults who receive employment and day services through a state IDD agency (Winsor et al, 2021). Most individuals, approximately 81%, use facility-based work and non-work services and community-based, non-work services; 21% work in integrated employment in the community, and 15% work in facility-based programs. Some individuals may do both paid work and non-work activities and may be counted in multiple settings, resulting in totals exceeding 100 percent.
While substantial gains in employment rates for adults with IDD remain elusive, the total number of working-age adults with IDD in the workforce has grown substantially since 1990. More people with IDD are working and have earnings than at any time in history (Winsor et al., 2021). As a result, more are also aging and moving into retirement. Literature suggests that in the years to come, larger numbers of working-age adults with IDD will be leaving the workforce (Heller, 2017; Stancliffe et al., 2019) and understanding their needs and planning for supports is critically important.
Lessons for the Future
The growing number of working adults with IDD who reach retirement age represent the increasing and changing needs of people with disabilities across the lifespan. Many federal and state policies specifically address the transition needs of youth with disabilities (i.e., the Workforce Innovation and Opportunity Act, Individuals with Disabilities Education Act, Every Student Succeeds Act, Higher Education Act) to ensure services and supports address their unique needs based on their life stage. This is not necessarily true for older adults in transition to retirement. Best practices identified for transition-age youth with disabilities (Papay & Bambara, 2014) in community life engagement (CLE) (Sulewski & Timmons, 2019; Sulewski et al., 2017) and in other literature (Bogenshutz et al., 2015; Hewitt & Nye-Lengerman, 2019) suggest that practices and policies can be adapted to facilitate an inclusive life and an array of choices for the retirement years. Among them: self-determined and directed choices, culturally relevant opportunities and supports that align with an individual’s preferences, financial and benefits planning, self-expression through arts and culture, and opportunities for personal relationship-building and community engagement.
Each of these represents a strategy or practice that has been developed and used to facilitate inclusive lives in the community, where individuals with IDD have opportunities for choice and control. Supports (paid and unpaid) assist individuals to make choices about what is best for them, how they want to spend their time, and what supports or services they need. When thinking about the development of services, training, or even policy, these items also reflect the multiple dimensions of well-being that require consideration: financial, health, social, and cultural.
The mission of the American Association of Retired Persons (AARP) has been to “empower people to choose how they live as they age.” As one of the leading U.S. aging and retirement organizations and resources, AARP (2012) outlines several steps in getting ready for retirement. Disability services and systems have often created parallel systems for those with disabilities, rather than leveraging or using systems that already exist. In both planning for and delivering services to retired adults with IDD, AARP and many other entities have developed tools, policies, and best practices than can be universally applied to people with and without disabilities. Examples include financial calculators, Social Security and Medicare planning, and community life engagement supports. While supports do need to be individualized and must consider unique support needs, some of the answers and solutions for building a more robust network of services and policies have been well developed.
Many adults require additional supports as they age, from both informal personal networks and paid sources. There is a significant shortage of direct support professionals, and any long-term supports, services, and public policies must both consider, and seek to address, the direct support workforce crisis. Without the backbone of a professional, fairly compensated, and trained workforce, many of the desired outcomes for lives in the community in retirement will go unfilled.
Expecting more in retirement
Nearly a generation of adults with IDD have been working in jobs and careers. They have the right to retire like their peers without disabilities. Sometimes referred to as the ADA generation, there are thousands of workers who have been in all aspects of community life.As they retire, their expectations likely have not changed. Research suggests that choice and control in life, setting, and finances is important to people with disabilities at all stages in life (Bogenshutz et al., 2019; Curryer et al., 2018; Hewitt & Nye-Lengerman, 2019).Ensuring that family, friends, community members, and support providers can help facilitate a meaningful life in retirement is important.Retired workers with IDD should expect to have choices in retirement and may have come to expect a high level of participation and independence as a result of years of work in paid employment.
As a result of federal policy change (such as in Home and Community Based Services), state investments (such as Medicaid expansion), and support provider approaches (including person-centered practices), there is an opportunity to both expect and develop fully inclusive retirement options for adults with IDD. This could include a mix of time at home and in the community, activities through a provider and volunteering, or unstructured time. The recognition of the changing support needs and preferences of retired adults should be central in individualized planning.
More adults with IDD are retiring from paid employment than at any point in history.They have both similar and unique needs compared with other adults who are retired.Services, systems, and policies must be addressed to ensure that retired adults with IDD are able to lead inclusive, self-determined lives based on their need and preferences. This includes addressing transition needs related to healthcare, housing, and social participation, many of which can come from existing resources for retirees without disabilities. There is tremendous opportunity to use practices developed for other populations to inform how to support retired adults with IDD to lead full and meaningful lives.
Tapping into Potential with Dr. Kelly Nye-Lengerman, University of Minnesota
Nye-Lengerman delivers a keynote address on employment and education.
American Association of Retired Persons (AARP). (2012). 10 Steps to Get You Ready for Retirement. https://bit.ly/3n7do66
Bogenschutz, M., Amado, A., Smith, A., Carter, E., Copeland, M., Dattilo, J., … Walker, P. (2015). National research goals for social inclusion of people with IDD. Inclusion, 3(4), 211–218.
Bogenschutz, M., DeCarlo, M., Hall-Lande, J., & Hewitt, A. (2019). Fiscal stewardship, choice, and control: the context of self-directed services for people with intellectual and developmental disabilities (IDD) in the United States. Intellectual and Developmental Disabilities, 57(2), 158–171.
Curryer, B., Stancliffe, R. J., Dew, A., & Wiese, M. Y. (2018). Choice and control within family relationships: The lived experience of adults with intellectual disability. Intellectual and Developmental Disabilities, 56(3), 188–201.
Erickson, W., Lee, C., & von Schrader, S. (2021). Disability Statistics from the 2018 American Community Survey (ACS). Ithaca, NY: Cornell University Yang-Tan Institute (YTI). Cornell University Disability Statistics website www.disabilitystatistics.org.
Heller, T. (2017). Service and support needs of adults aging with intellectual/developmental disabilities, U.S. Senate committee on Aging. 115th Congress (Testimony of Tamar Heller). https://bit.ly/3n7qXCs
Hewitt, A. S., & Nye-Lengerman, K. M. (Eds.). (2019). Community living and participation for people with intellectual and developmental disabilities. American Association on Intellectual and Developmental Disabilities.
Papay, C. K., & Bambara, L. M. (2014). Best practices in transition to adult life for youth with intellectual disabilities. Career Development and Transition for Exceptional Individuals, 37(3), 136–148.
Stancliffe, R. J., Nye-Lengerman, K. M., & Kramme, J. E. (2019). Aging, community-based employment, mobility impairment, and retirement: National core indicators–Adult Consumer Survey Data. Research and Practice for Persons with Severe Disabilities, 44(4), 251–266.
Sulewski, J. S., Timmons, J. C., Lyons, O., Lucas, J., Vogt, T., & Bachmeyer, K. (2017). Organizational transformation to integrated employment and community life engagement. Journal of Vocational Rehabilitation, 46(3), 313–320.
Sulewski, J. S., Timmons, J. C., & ThinkWork! at the Institute for Community Inclusion at UMass Boston. (2019). State roles in promoting community life engagement: Themes from the State Employment Leadership Network’s working group. ThinkWork! Publications, 35. https://scholarworks.umb.edu/thinkwork/35
U.S. Department of Labor. (n.d.). Defining Customized Employment. https://bit.ly/3jjCtcK
Winsor, J., Timmons, J., Butterworth, J., Migliore, A., Domin, D., Zalewska, A., & Shepard, J. (2021). StateData: The national report on employment services and outcomes through 2018. University of Massachusetts Boston, Institute for Community Inclusion.