Impact Feature Issue on Aging and People with Intellectual and Developmental Disabilities

Community membership is not only being in, but also being of the fabric of daily life in society. It is recognizable in the presence of satisfying relationships and meaningful participation (Harlan, Todd & Holtz, 1998, p. 4).

For adults with developmental disabilities who are aging, the later decades of their lives can be a time to pursue new interests and contributions to their communities alongside other "seniors" and neighborhood members. To make it happen, however, takes work. It starts with a community commitment to inclusion in the myriad of social, recreational, and educational programs available for senior citizens and others, and an investment in an infrastructure of support. Two programs that have made it work demonstrate this point.

The FRIENDS Program in St. Louis

The FRIENDS Program of the St. Louis Regional OASIS Center was inspired by the insight that aging adults with developmental disabilities should be able to take advantage of typical senior adult programs and settings. OASIS is a national education organization dedicated to enriching the lives of adults age 50 and older through lifelong learning and service. Offering programs in the arts, humanities, health, technology and volunteer service, OASIS brings people together to learn, lead and contribute in their communities. Sharon Hales, the founder of the OASIS FRIENDS program, was at first surprised by the prejudices encountered by adults with developmental disabilities as she referred them to community-based senior programs. Then she realized that the seniors in those programs, for their entire lives, had not had opportunities to be in contact with age peers with disabilities. Exclusion practices in school, in work, in life prompted seniors at OASIS to ask, "Who are these people?" Of course it would take some work and some "getting used to" to overcome these barriers. Sharon realized that "it's not just access."

So, 15 years ago, she started a small pilot project. She identified 12 individuals with developmental disabilities and helped them express their interests and select classes at the OASIS senior program. Similarly, she handpicked a small number of regular OASIS members who would volunteer as peers to accompany adults with developmental disabilities and, through joining activities with them, help integrate them into the regular programs. She intentionally invited as volunteers OASIS members who themselves were leaders and role models within the program. Drawing on the work of LaPore & Janicki (1991), Sharon developed a sensitivity training program for the volunteers to address concerns they had about the task they were taking on. Soon, pairs of buddies were taking dance classes, art classes, and attending a myriad of community events totally outside of the disability services system. A survey at the end of the first year demonstrated real changes in attitudes and the modeling of new behaviors not only on the part of general program participants but also on the part of the aging adults with disabilities, who were becoming accustomed to a new, less stigmatized stage of life.

Today, the FRIENDS program includes 50 aging adults with developmental disabilities attending OASIS programs in several locations in the St. Louis area. A solid core of 25-30 volunteers keeps the community integration effort alive, with Sharon's continued support and leadership. Challenges remain. There is, after all, the question of access and Sharon notes that there is another system -- transportation -- that needs to be transformed around the value of inclusion. And, after 15 years of inclusion, adults with developmental disabilities themselves are encountering new issues around physical health and function that complicate their participation and highlight the need for more inclusive educational programs in healthy aging, fall prevention, chronic disease management, and others. Throughout the 15-year evolution of the program, Sharon attributes its success to the ongoing commitment to two core values expressed in posters on her wall: "Allow abilities to bloom" and "In the heart of each community, everyone belongs."

Involving All Neighbors in Seattle

Involving All Neighbors offers another comprehensive approach to including aging adults with disabilities in the community. Developed by the Department of Neighborhoods in Seattle, Washington, the program, which operated from 1995-2008, started from a simple question asked in a city-sponsored meeting of neighborhood activists: "What does the Department of Neighborhoods do to encourage persons with developmental disabilities to get involved in neighborhood life?" Such a question is inspired. It reverses the normal presumption that people with disabilities have needs, not gifts to offer their neighborhoods. In Seattle, it initiated a serious investment of personnel and creativity in responding.

Often facilitating action through funding from its Small Sparks program, the Department of Neighborhoods encouraged neighborhood-based solutions to the challenge of involving adults with disabilities. It realized there was no wholesale solution, rather, that each neighborhood would innovate on its own. In some instances, a person who was already a leader in the disability arena, such as People First, would be drawn into more generic neighborhood leadership roles. A self-advocate named Larry was active in disability advocacy and an insightful friend introduced Larry to the president of the neighborhood council. A staff member of the department helped Larry create a presentation to the council on accessibility issues and it wasn't long before Larry was elected vice president of the council. Archie, the president of another People First chapter, was an avid gardener, often found helping with neighborhood clean-up projects. With the assistance of the chapter advisor, the West Seattle People First group applied for and received a small grant to design and implement a plan for a new neighborhood park.

In many cases, the simple bringing together of people who would not otherwise interact results in unanticipated relationships and wonderful benefits to the neighborhood. A workshop called "Get Involved in Your Neighborhood" was developed by the department and brought together two women who had known each other since childhood, but were spurred on to double-up and offer Saturday volunteer services in tandem to young patients in the local hospital.

Though Involving All Neighbors may have ceased as a program, the spirit of inclusion continues. For instance, the Department of Neighborhoods has brought on board Public Outreach Liaisons to work on culturally relevant outreach to many different communities, including people with disabilities.

Getting Started

A few years ago the Center on Aging and Community at the Indiana Institute on Disability and Community publishedThe Guide to Building Community Membership for Older Adults with Disabilities, which provides some compelling insights into the work of the prospective community builder who can open up opportunities for older adults with developmental disabilities to be engaged in their communities. It provides several community-building tools for the individual or organization seeking to help integrate older adults with disabilities into senior centers, neighborhood organizations, and other community groups. It includes worksheets, capacity inventories, relationship maps, and a community presence questionnaire that helps the community builder evaluate his or her efforts. And, it provides practical advice about what might be the critical starting point for any attempt to build community membership: active and deep listening. It cites Pat Beeman's (1995) Ten "Points to Listening":

1. Listen with the belief a person has something to give and is of value.
2. Listen to help people discover their gifts, which they may not see.
3. Listen with an open mind.
4. Listen to dreams or visions, not only to what is in the present.
5. Listen without hurrying.
6. Listen to fears and pain.
7. Listen with no intent to fix or control anyone.
8. Listen for words that actions may not reveal.
9. Listen to recognize opportunities.
10. Listen knowing that things take time.

By listening and not dominating the conversation with too many questions, we can achieve the kind of conversational equality from which a relationship can grow. From one "unpaid" relationship, others can grow. When the balance of paid to unpaid relationships tips in favor of the latter, then we know that the adult with a developmental disability has achieved authentic membership in a real community.