Frontline Initiative Aging

We have all heard about the forthcoming “graying of America.” Perhaps as striking as the growing numbers of older people we will see in the next few decades is the growing number of older people with disabilities. We can safely project that there will be over 35 million people over age 65 living with a disability by the year 2030.

We can also safely say that many older people with disabilities do not want to live in nursing homes or other assisted living facilities. Fortunately, there are a growing number of supports available to help people remain in their own homes. Many older people with disabilities also want to remain in control of services they receive, managing their services themselves rather than having an agency manage these services. This move toward consumer-controlled services has achieved a degree of acceptance in aging services. There are several consumer-controlled service pilot programs for older people with disabilities being evaluated. However, these programs are still very limited in the aging arena, and the trend toward consumer-controlled services for older people is still in its infancy.

In contrast, the concept of consumer-controlled services has been a key component of the U.S. disability rights movement for over 25 years. The independent living movement arose in part as a reaction to the role of ‘dependent’ that people with disabilities have to assume in order to gain services from agencies. The heart of the independent living movement is the almost 500 Centers for Independent Living (CILs) in the U.S. CILs are nonresidential, community-based, consumer-controlled agencies that provide supports and training to people with disabilities who wish to live independently. A key component of CILs is their emphases on consumer-controlled services. 

While CILs have traditionally targeted the needs of working-age adults with disabilities, the four core CIL services are intended to support people of all ages who wish to live independently. Yet, as of 1998, only approximately 25% of CIL service recipients were over age 55. While there are a number of additional services that some CILs provide targeted toward aging people, such as senior companion and home modification programs, CILs currently are at their financial capacity limits as to who they can help. Further, there is currently little information available to CILs in how their services can be modified appropriately for older people, or how to conduct outreach to older people with disabilities.

Currently research is being conducted on how CILs can promote consumer-controlled services for older people with disabilities. One study in conjunction with the Minnesota Association for Centers for Independent Living consists of surveys and focus groups with older CIL participants, and interviews with CIL staff. The purpose of the study is to find out about the types of older people with disabilities that are currently using CILs for information and support, and to learn what CILs can do to better meet the needs of older people.

While the findings are preliminary, the greatest concern for survey respondents was that they wish to remain in their own home. Further, a large majority felt that controlling their own services was important.

The older people with disabilities who receive services from CILs think that CILs provide excellent services to older people. However, they also indicated that many older people would not think of going to a CIL for services.

It is hoped that through this research project we will learn how CILs can reach out to older people with disabilities, with the goal of helping older people with disabilities remain in their own homes.

This article was supported in part by funding from the John A. Hartford Foundation.