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

As in the general population, the aging of people with lifelong disabilities has been undeniable over the last few decades. In the 1990s, an initial body of work highlighted the need for research, programs, and policies to support aging of people with intellectual and developmental disabilities (IDD). Much progress has been made since then in including adults with IDD and their families in conversations about their experiences as they age, in tailoring programs and supports, and in bridging aging and disability programs and services. Yet, adults with IDD and their families continue to experience many challenges as they age that can hinder them from living self-determined and healthy lives enriched by the pursuit of social connections and meaningful activities. In this article, we highlight the state of knowledge on promoting healthy aging for adults with IDD and identify future directions in this field. Key aspects to consider in promoting healthy aging are maintaining health and function, promoting lifelong services and supports, and supporting active engagement with life.

Maintaining Health and Function

Individuals with IDD often experience poorer health and earlier age-related declines as they age. This is due not only to genetic and biological factors but also to social, environmental, and behavioral factors.Examples of genetic factors include the earlier onset of Alzheimer’s disease, sensory impairments, and menopause in persons with Down syndrome. Certain groups of individuals with IDD experience age-related chronic conditions earlier or more frequently compared with the general population. Individuals with cerebral palsy who are non-ambulatory and adults with epilepsy are at high risk for osteoporosis. Adults with autism may have a higher risk of digestive problems due to dietary habits. Other conditions with higher rates for adults with IDD are diabetes and oral disease (Havercamp & Scott, 2015).

Poor health behaviors and poorer health care access contribute to the health disparities experienced by aging adults with IDD. They have higher obesity rates, often due to physical inactivity and poor diets. Adults with co-occurring IDD and mental health conditions often experience weight gain due to medication in addition to lack of physical activity. Lack of adequate health care access contributes to earlier mortality. People with IDD are more likely than the general population to die from causes that could have been prevented with proper medical interventions. The recent COVID-19 pandemic highlights the risks that people with IDD face as their mortality rates from COVID-19 were much higher than for the general population (Landes, et al., 2020).

These findings on health disparities point to the need for public health initiatives to enhance preventive care and health promotion interventions. Hence, it is important to target public health agencies, community-based organizations, families, and people with IDD to improve public health systems, health education, and health behavior interventions. The HealthMatters™ Program is an evidence-based program, based at the University of Illinois Chicago, that provides health behavior education to adults with IDD, train-the-trainer programs for community-based agencies, and dissemination strategies to implement these programs broadly across states and internationally (Marks, Sisirak, & Heller, 2010).

Promoting Lifelong Services and Supports

The majority of people with IDD, 71%, live with their aging family members (Braddock et al., 2017). About 300,000 people with IDD and their families in the United States are waiting to receive long- term services and supports, such as a residential setting in the community or in-home supports (Larson et al., 2017). Although there is an overwhelming need for these public supports, most families (75%) serve as unpaid caregivers for their adult family member with IDD (Hewitt, 2014). Though families have reported positive outcomes, such as adult children with IDD providing companionship and personal care to aging parents (Heller et al., 2007), caregiving can also have a negative impact on the health of parents when they lack sufficient supports (Magaña & Smith, 2008). As parents age, families need to plan for the future. Despite its importance, not all families have the ability or opportunity to engage in planning for the future. Many are hindered by a lack of financial means, a lack of available residential and other options for the adult with IDD, anxiety caused by the process and procrastination (Burke, Arnold, & Owen, 2018). This lack of planning means that adults with IDD may experience emergency placements in which their needs cannot be met. Future planning interventions such as The Future is Now program, also at University of Illinois Chicago, assist families in taking concrete steps in planning and place the desires and needs of adults with IDD at the center of this process (Heller & Caldwell, 2006).

Using visual lifelines, individuals communicated what is important to them now.

Supporting Active Engagement with Life

Many individuals with IDD continue to experience limited inclusion and belonging in their communities. Experiencing inclusion and belonging requires building meaningful connections and supportive social relationships with others. Such relationships need to be developed and nurtured across the life course and adults with IDD need supports and opportunities to do so. Mapping social networks and engaging with the wishes of adults with IDD when it comes to friendships and relationships needs to be a central part of future planning. Additionally, programs are needed that support adults with IDD of retirement age who are no longer able to or no longer want to work or attend traditional day services. More information needs to be provided about the choices and options available for older adults with IDD for meaningful activities and social engagement, such as participating in senior centers and other activities designed for older adults. One program that aims to support older adults with IDD in the transition to retirement uses mentors from local community groups (Stancliffe et al., 2013). (See Transition to Retirement on page 19.)

Future Directions

Aging and disability networks need to develop more effective approaches to meet the needs of older adults with IDD and their families. The use of technology and universal design hold promise to allow for greater independence. Additionally, a well-trained and well-paid direct support workforce is needed to better assist older adults with IDD and their families at home as primary caregivers are aging and become unable to provide care. Finally, the implementation of supported decision making and person-centered planning throughout the life course can promote the self-determination of adults with IDD as they age.

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