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

Due to a dramatic increase in longevity over the past several years, people with intellectual and developmental disabilities (IDD) have begun to regularly outlive their parents for the first time in history. People with IDD often continue to live with their parents into adulthood to ensure support needs are met, so aging-related changes or the death of a parent can bring about a myriad of challenges and threaten their ability to continue living in the community. The Association on Aging with Developmental Disabilities (AADD) formed in 1989 as a special interest group, comprised of stakeholders from both the aging and developmental disability fields who recognized the potential implications of this demographic shift. AADD became incorporated in 1994, and over the past few decades, has garnered recognition both locally, for excellence in supporting community members with IDD to thrive in older adulthood and nationally, as an emerging leader in establishing best practices for people aging with IDD.

As a direct service provider, AADD supports more than 200 individuals across three Missouri counties in the St. Louis area to maintain their independence and to be active members of their communities. Most people served by the organization are 50 or older, nearly half identify as Black or African American, and almost all are either low income or are living below the poverty level. Most service recipients also have few or no close living relatives, amplifying the critical need for the type of services AADD provides.

Most service recipients also have few or no close living relatives, amplifying the critical need for the type of services AADD provides.

All of AADD’s programs, which include supported living, social clubs, and retirement support, feature education and training that promotes independence at home and in the community. In a doctoral dissertation published in 2013, AADD was the subject of a case study that explored age-related learning needs of older adults with IDD and how such needs are best met. Through a series of observations, surveys, interviews, and focus groups, Grosso (2013) concluded that the organization, “…offers a best-practice learning model for helping older adults with [IDD] to successfully age in place.” Grosso (2013) noted that one of the most important components of AADD’s retirement transitioning program and retirement support groups is helping participants develop an identity outside of their disability diagnosis, particularly when adjusting to retirement, reverse caregiving, or other aging-related role changes. AADD’s retirement support group members have dubbed themselves “Senior Hot Shots,” and when asked who they were while on a dock fishing, they replied, “fishermen,” Grosso wrote. The author identified several other key components of the program, including strong staff leadership, relationship and rapport building, respect, belief in the capabilities of older adult learners with IDD, and an emphasis on the importance of having fun. 

In addition to serving as a Medicaid waiver provider, AADD pursues local and national grant funding and leverages partnerships to expand the resources available to the community. For example, AADD has recently partnered with the St. Louis University Geriatric Education Center (SLU-GEC) to explore adapting an evidenced-based group rehabilitation model for reducing and preventing loneliness among older adults to individuals with IDD. The model, called Circle of Friends, is one of the subjects in a SLU-GEC study, titled The Use of Psychosocial Groups to Alleviate Loneliness and Isolation in Seniors. The study explores how older adults can find meaningful connections and activities to reduce isolation in their lives. SLU-GEC has assisted AADD in modifying the Circle of Friends curriculum and assessment tools to meet the needs of older individuals with IDD. Originally developed by scholars and practitioners at the Central Union for the Welfare of the Aged at Helsinki University, the AADD program is the only known Circle of Friends program at this time that includes older adults with IDD.

Beyond their direct service role, AADD is committed to educating families, caregivers, employers, support workers, professionals, and the community on a range of issues and needs associated with aging with IDD, as well as the latest research on promising practices in supporting this population. Though the organization employs a variety of information dissemination strategies and offers a variety of educational opportunities, the most notable is their annual conference. In collaboration with an ever-growing network of diverse stakeholders, AADD has assiduously planned and hosted an annual professional conference for the past 30 years. Garnering interest both nationally and internationally, the intent of this two-day conference is to bring together professionals from aging and developmental disability fields to share best practices. AADD has also forged longstanding partnerships with several academic institutions, including SLU-GEC, the University of Missouri-Kansas City Institute for Human Development (a University Center on Excellence on Developmental Disability), and the Washington University School of Medicine Intellectual and Developmental Disabilities Research Center. In addition to providing access to the latest evidence-based resources and programs, academic partners help identify and recruit diverse and cutting-edge conference speakers each year. The 2019 conference drew more than 350 attendees, including nurses, social workers, direct care providers, and consumers from 12 different states. Despite the transition to a hybrid format in 2021, more than 260 professionals attended, representing 23 states.

Planning for AADD’s next annual conference is currently underway. Scheduled for May 23-24, 2022, the conference will again feature a hybrid format that allows for both in-person and online attendees to interact live with speakers.