Frontline Initiative Later Life Supports

Preparing for the "age creep":
What DSPs and providers need to know


Dr. Matthew P. Janicki is a Research Associate Professor of Human Development at the Institute of Disability and Human Development at the University of Illinois at Chicago. Dr. Janicki serves as the Director for Technical Assistance for the Rehabilitation Research and Training Center in Aging with Developmental Disabilities–Lifespan Health and Function.

It wasn’t until the late 1980s that the field of intellectual and developmental disabilities (I/DD) addressed the growing aging of the I/DD population. We learned that many people with I/DD were not well served by local aging agencies. Direct Support Professionals (DSPs) told us about adults in their 60s and 70s who were still employed in sheltered workshops. This didn’t seem right when other people their age were retiring and enjoying life. This prompted us to help redefine what states might do to help people retire. What did retirement mean for a person with I/DD who spent most of his or her life receiving disability services? 

First, the state regulations needed to be changed to allow for retirement. The old regulations did not allow for people with I/DD to stay at home and get involved with social activities. Then, some of the funding had to be adjusted to help support these adults as retirees. Work checks had to be replaced with pension checks. It was also important to find meaningful activities so people with I/DD could remain engaged and stimulated in their communities. We looked at what might be of interest to the retirees. We asked how they might want to spend some portions of their days.

What we found is that all of our communities had places where senior citizens might go when they wanted a place to see friends. Here they could be involved in activities together or enjoy a meal with friends. These places were the local senior centers, adult day service centers, and the congregate meal sites. For some older persons with I/DD these were ideal settings. They could go and make new friends and exercise. For some, these settings were not ideal because the senior programs did not provide direct support or the level of personal care needed. Some people have limited social skills and aren’t easily accepted by older people who do not have I/DD. In general, older adults without lifelong disabilities have not been exposed to people with I/DD due to years of segregation. Some people need help with moving about or with eating or dressing. People attending senior services are expected to be able to do these things. 

As we wrestled with how to create alternatives for involvement in community activities, we also became aware that most agencies were unprepared for serving their aging clientele. We also noticed an “age creep”. More adults were entering middle and older age than ever before. Where were the services to assess their needs as older people? Where were the experts who understood aging with a disability? Where were DSPs with experience supporting older people?

What do agencies need to have in place to be ready for the “age creep”? First, providers must know the individuals they support. How many are of what age and what are their needs? For persons over age 40, how many are prematurely aging? For example, many people with Down syndrome age early. Some show signs of dementia. For adults older than age 60 (or maybe older than 50 if they are aging early), how many want to change their lifestyle and become retirees, or at least work less? Second, agencies need to have a way of assessing older clients to look for medical issues and changes in mental abilities. They need to look for any changes related to mobility; sight and hearing that may be a part of the aging process. This means agencies need to have access to medical personnel who can do assessments. Finally, agencies need care coordinators who can link older people to services they need. 

While our initial project was primarily focused on retirement, the new focus is on a range of health and social care considerations for our older population. Ten thousand baby boomers are turning 65 every day. Many people with I/DD are in the baby boom generation. It is necessary that services cross the lifespan and the needs of older adults be given special consideration. Only with appropriate age-related supports will we see aging with dignity among older adults with I/DD.