The experiences of three older adults with developmental disabilities highlight ways in which social relationships can be nourished through the establishment of community roles. Members of the Community Membership Project of the Center on Aging and Community used paid community builders working individually with older persons who had developmental disabilities in order to help them obtain positive, valued social roles and relationships with nondisabled community members. As a means to this end, participants were supported to engage in community activities corresponding to the interests and talents discovered in an initial period of exploration. Stories of these community builders' work illustrate the intentional strategies and concerted effort necessary to create community connections and meaningful relationships.
The importance of social relationships for older individuals has been confirmed by research such as the MacArthur Foundation studies of aging, in which investigators demonstrated that social support gained through strong connections with family, friends, and organizational memberships is associated with health, longevity, and well-being (Rowe & Kahn, 1998). People with disabilities themselves identify relationships with persons in the community as a crucial area where support is needed (Amado, 1993). However, developmental disability service providers have made concerted efforts to support the social connections of older individuals with community members even less frequently than they have for younger individuals (Anderson, Lakin, Hill, & Chen, 1992). The affiliations that people with disabilities have with paid staff frequently comprise the greater part of their social networks, and yet such affiliations are especially unstable (Snow, 1994); if the employee is no longer on the payroll, the relationship usually disappears.
The Community Membership Project, a 3-year, federally funded grant awarded to the Center on Aging and Community at the University Affiliated Program of Indiana, was designed to expand the social networks of participating older adults with developmental disabilities. Project planners assumed that through involvement in valued community roles associated with meaningful activities, these individuals would be more likely to develop unpaid sources of social support.
The planners thought that participants could achieve social recognition by taking on valued roles that would, in turn, set the stage for new relationships. In settings where community roles are acquired, there is frequent contact with people who hold common goals and interests. Thus, there is a basis for social connections and potential friendships outside the setting.
A second assumption was that participation in valued roles is not only a means to gain social support, but an end in itself. Positive participation in the life of the community offers people with disabilities, one by one, the opportunity to reverse the negatively stereotyped images in which they have been cast and to be known as individuals who have something to offer. A role can help an individual to project an image of competence and other respected qualities. Valued social roles are powerful tools in gaining a host of other assets that society values (Wolfensberger & Tullman, 1982). In becoming an integral part of a church, a club of hobbyists, a charity board, civic committee, volunteer effort, political campaign, or just a “regular” at the coffee shop, the individual can give to others while gaining acceptance and a sense of belonging. The reciprocity essential to freely given relationships cannot be attained by one who is solely in the role of “client.”
The Community Membership Project used Center on Aging and Community staff members as community builders to collaborate with the participants, supporting and facilitating their acquisition of valued roles and social connections. There were 14 participants in the project. In most instances, these individuals were located through the nursing homes or residential and vocational agencies from which they were receiving services, targeting those who had had very little opportunity to experience community life. All participants had a label of developmental disability and were 50 years or older, with the exception of persons experiencing premature symptoms of aging, such as those with Down syndrome or cerebral palsy, who were 35 years or older.
Although the tasks of community building work are unique for each person, the project personnel implemented strategies that facilitate particular outcomes in four stages of the process (Harlan, Todd, & Holtz, 1998). These stages are summarized in Table 1.
In the initial period, the community builder assists the participant to discover preferences, interests, and talents through exploration of his or her town or neighborhood. These discoveries form the basis of a vision that is created in the second phase, an image of how and where the individual might contribute his or her presence and gifts. What does the individual enjoy doing, with whom, and in what kinds of environments? The vision gives direction to the third task, getting the individual connected to places and organizations outside the human service system. Site evaluation criteria are employed to weigh the suitability of the location or group to the individual's abilities and interests and to evaluate the site's potential for meaningful activities and socializing. The following criteria were given to community builders to help determine success for a particular individual:
Are the location and facility physically accessible to the individual?
Does the activity site match the person's interests, talents, and aspirations? Explain:
Does the environment/setting seem to resonate with the individual's personality and habits? (Consider preferences in regard to noise level, number of people present, degree of structure of activities offered, the individual's energy level at particular times of the day, fixed versus flexible routines, etc. Consider age and gender-related preferences.)
Is the site associated with religious, cultural, racial, ethnic, or family traditions that are important to the individual's social identity? Describe:
What will the person do at the site? Is there potential for developing a positively valued role and meaningful activities for the person? Explain:
Are there personal qualities and abilities that can be enhanced at the site? Described these qualities:
Is there a core group of people (who are there on a consistent basis) to get to know? If yes, who are they?
Are there opportunities to talk/socialize with people at the site? If yes, under what circumstances? (Adapted from Harlan, Todd, & Holtz, 1998)
Such criteria can be utilized to estimate the likelihood of success in gaining a valued role and relationships with others within the chosen setting. In the fourth stage, having laid the groundwork together with the participant, the community builder's role becomes one of cultivating and nurturing budding relationships. Ultimately, the community builder seeks to “fade” as a physical presence when his or her on-site support is not needed. This is accomplished by strengthening the participant's role at the site, as well as by encouraging and nurturing natural supports and interpersonal relationships.
In order to examine the influence of the Community Membership Project on the social relationships of the participants over a 3-year period, in this longitudinal research we used a case study approach. Information regarding the 14 participants was gathered before, during, and after the project through questionnaires, community builders' field notes, and informal interviews with participants, family, and community members. The size of the participants' social networks before and after the project was compared with the aid of a relationship map (Harlan et al., 1998), which documents six clusters of relationships: (a) intimate friends and family; (b) friends; (c) distant but valued friends and family; (d) people known through participation in group activities including work, school, and leisure; (e) people who are paid to provide a service to the individual; and (f) change agents (persons who have provided positive assistance in making a major life transition). Three older adults with developmental disabilities were then selected to illustrate the diversity of the impact of the project. The case study method was employed because of its potential to highlight factors that contributed to or were a barrier to successful outcomes and to illuminate the individual particularities of the community building process. However, we acknowledge the limitations of such an approach in generalizing these findings and making conclusive statements about strategies for promoting community membership.
The Community Membership Project: Three Stories
Rick: “I can do things on my own.”
At the beginning of his 3-year participation in the project, Rick was 47 years old, a self-described “hillbilly and a street musician.” He was outgoing and had a number of interests that seemed promising for making community connections. However, he had limited experience in making his own choices and exploring his interests. Rick had been institutionalized as a baby and had lived in a variety of abusive and exploitative settings as an adult.
He and Jane, his community builder, began investigating diverse public places in town. They went to the library, where he was thrilled with books about country music and sports and with tapes of the Bible. They went to record stores, the university radio and television stations, and a baseball game. Rick was enthusiastic in his explorations. However, he occasionally would insist that he could not do a particular activity, explaining, “I was born with Down syndrome.” Jane also got to know Rick by talking to people who knew him well, including his church pastor.
During many months of excursions, the places that emerged as ongoing favorites were a downtown business offering musical instruction, a campus store in which athletic wear and related goods were sold, and the YMCA. In formulating a vision for Rick, his interests in sports, music, the university, and interacting with people came to the forefront.
The YMCA appeared to be a well-matched site for Rick because it was used by persons of all ages and walks of life, and it offered many different kinds of activities at which he could succeed. With his love of shooting basketballs and his outgoing personality, Rick was a natural for the role of exercise center member, clearly a positive role in our fitness-seeking society. He was delighted with the status of having a photo ID card and explored everything the facility had to offer. Jane, a member, went along and exercised too. They tried to go on a consistent day and time so that the same staff members and patrons might be present and able to get to know Rick. Jane purposefully avoided an obtrusive presence, which might give people the impression that Rick needed a caretaker. At first she was nearby in case assistance or a familiar face was needed. Then she moved to other parts of the building, giving Rick increasing time on his own so that he might interact with others. When Rick asked for her assistance with the weight machines, she encouraged him to approach other members or employees, which he did.
Having had a few months to get comfortable with the weight machines and other facilities, Jane thought Rick might enjoy a class. They looked at the schedule, and Rick chose a class for active seniors, which introduced him to yoga, aerobic dancing, water exercises, and wallyball (a game similar to volleyball that is played in a racquetball court).
The student role allowed Rick to be a leader and set an example with his contagious energy and enthusiasm. His instructor attested that his presence was indeed a motivating force for the other class members. “[Rick]'s just an up-lifter for everybody,” she remarked.
One of the barriers encountered in the getting-connected stage was the YMCA membership fee. At the time, Rick was living with a middle-age couple, “friends” who had taken on a parental role for Rick and served as his social security payee. They kept tight control over Rick's money. A temporary solution to the membership fee problem was found when his community builder helped him fill out an application and obtain scholarship funds. The couple was subsequently determined to be financially exploiting Rick, and Adult Protective Services intervened. Rick became the recipient of day and residential services from a local agency. He now had a small amount of discretionary money that could be used for recreational activities.
Rick's community experiences helped the agency to better serve him. The agency initially wanted to put Rick in a group home. Having seen him outside the client role and having gotten to know him as a multidimensional person, the community builder was able to provide information that helped convince the agency that Rick could manage living in an apartment by himself, with a few hours per week of case worker support. She attested to his ability to function independently and his quickness at learning new skills. She also assisted him to share information about interests and aspirations he was uncovering as the agency sought community employment for him. As a result, the agency later looked at job possibilities on the university campus.
It had become apparent in the getting-to-know-you stage that Rick was interested in anything associated with Indiana University and its sports teams. The university athletic building and its gift shop became regular hang-outs for him. He bought inexpensive items with the team logos and talked to the store clerk, Gloria, on each visit. She saved special items to show him and shared her employee discount with him when he brought in his savings for a purchase. In a town where athletes are revered and power and prestige are attached to the university, wearing college team insignia and colors confers a positive status. In his whole-hearted embrace of the identity of Indiana University sports fan, Rick acquired a role that brought him instant recognition by others upholding the respected traditions of local culture.
Having noticed Rick's good sense of rhythm in his dancing at the YMCA class, and with his history of street-corner tambourine playing, Jane thought that he might be interested in playing a percussion instrument. They visited a local music store where he enthusiastically tried out most of the drum sets on display. This led to his enrollment in weekly drum lessons there. He budgeted money for the lessons and learned how to reach the downtown store by bus.
Rick was pleased with the independence and choice-making he was able to exercise as he participated in his new activities. When he was invited to play his drums at a party, Rick was especially proud to take on the role of performer. He told the community builder, “I can do things on my own,” and “Just you and me will decide, no one else!” With these words he expressed not only his joy in exercising his autonomy, but the feelings of trust and rapport that are key to the community building process. He could rely on the community builder to support and help him during his decision-making process rather than making choices for him. Freely taking advantage of the resources around him, Rick's confidence contrasted markedly with the hesitation he exhibited when he first started the project.
Rick's teacher benefited from the drum lessons as well. He remarked, “It's giving me a lot of opportunity to grow as an instructor. . . . Plus I enjoy his company a lot too.” Music became the vehicle for a personal encounter that was rewarding to both parties. The community builder attempted to support and strengthen these opportunities for social connections that arose once Rick had become “a regular” in his new activities. Rick developed a great affection for his instructor at the YMCA. She reciprocated by taking a strong interest in his class participation. After the classes ended, she welcomed his visits to her office and maintained an interest in how things were going for him. The community builder helped Rick to develop his relationship with Gloria, the store clerk, not only by providing transportation for frequent visits, but through deliberate strategies: Jane helped him bring her a surprise bouquet of flowers one day, assisted him in sending a get well card when Gloria was in the hospital, and Rick and Jane created some opportunities where he could invite her to social gatherings. Gloria responded warmly to him. “He wants you to be his friend and he is so easy to get to know and be a friend to,” she said.
Clarence: A Search for Community
When Clarence joined the Community Membership Project at the age of 61, he and his first community builder began getting to know one another by visiting a wide variety of community settings. Clarence really enjoyed the outings. At the moment of the community builder's arrival, he would be ready in his hat and jacket, taking her by the hand to depart from the nursing home. This began a period of establishing rapport and trust between the two and allowing the community builder to learn about Clarence's preferences. Being asked to make a choice such as, “What do you want to do?” or “Would you rather have coffee or juice?” was a new experience for Clarence. These decisions proved very difficult for him to make. His life-long history of being told what to do and his limited experience and knowledge of life outside the nursing home added to his bewilderment. It was going to take time and perseverance to undo some of the harmful impact of his history.
Although it was the norm to institutionalize children with disabilities during the era of his childhood, Clarence lived at home with his family until age 38. His parents were college-educated and provided their children with a stimulating home environment. However, they had few expectations for Clarence and gave him minimal household chores. Reportedly, they were hesitant to have friends visit due to Clarence's disruptiveness and avoided taking him into the community for fear of what others might think. In 1976, his mother became ill and his father, no longer able to manage having Clarence at home, placed him in a nursing facility, his current residence.
Clarence was a man of few words. It was more helpful to observe his reactions to experiences than to ask him about his preferences. Therefore, in trying to get to know Clarence well and to find enjoyable places where he could use his gifts, Clarence and his community builder spent many weeks exploring potential opportunities. While walking around town, Clarence would occasionally recognize old acquaintances. The community builder took the opportunity to ask them questions in order to learn more about Clarence's history. Over time, it became obvious that Clarence had an array of interests. The community builder noticed he was particularly happy when singing, listening to big band music, taking items to the recycling center, eating out, riding in cars, helping others, and just being around people. The challenge for the community builder was now matching and positioning his interests and talents with a welcoming site and meaningful activities.
An initial attempt towards community connection was the local senior center. This site was chosen because Clarence enjoyed eating lunch at the center, he appeared to have an interest in bingo and the snacks served to players, and the “Golden Age Radio” program that was housed at the center offered some possibilities. Clarence and his community builder began attending the senior center on Mondays for lunch and bingo. Quickly, his community builder discovered that Clarence's attention was more focused on the refreshments and socializing than the game itself. He became captivated by a gentleman in a baseball cap. Clarence loved hats and loved trading them even more. The community builder tried to foster a relationship between the two men, hoping this individual might help open a door for Clarence to develop relationships within the senior center. Although he would gladly trade caps with Clarence, the gentleman preferred to stick with his own friends.
Progress toward participation and social connections at the center moved very slowly. The seniors, noticing Clarence's movement differences, began to watch his every move. They expressed displeasure if he spilled some popcorn or spoke out in a seemingly random fashion. One Monday, Clarence's regular bingo seat was taken. As he and his community builder walked toward other empty seats, a woman nearby requested the community builder to sit next to her saying, “He scares me.” The community builder used the opportunity to talk about movement differences and Clarence's way of communicating, but the woman responded by turning her attention back to her bingo cards.
The community builder decided that Clarence's participation in bingo at the senior center did not appear to be a good match. Bingo was a time-limited activity that most players took very seriously. It was apparent that the bingo players were not there to meet new people nor develop new relationships. This made it difficult for Clarence or the community builder to really get to know any other members. Many of the regulars only participated in bingo, arriving and leaving within 5 minutes of the game's beginning and end. Such strategies as arriving early, eating lunch at the site, or asking members to join them for a coke after bingo were unsuccessful. A lesson learned was that a key ingredient to a well-matched site is regular, unstructured social time outside the activity, allowing people to mingle and just be with one another.
On several occasions, Clarence visited the Golden Age Radio studio. He seemed to enjoy the live radio broadcast, but was quickly asked to stop attending because he had difficulty remaining quiet while the show was being produced. It was also not a good match because Clarence would have preferred to help out in some way while he was there, and no such opportunity was available.
After visiting several churches, Clarence chose a church near the nursing home. He and his community builder attended the Wednesday evening services. The community builder interpreted his preference for this particular church on the basis of his enjoyment of the Bible study time, his singing of hymns, and his eagerly shouting out the name of one of the deacons during scripture readings. Clarence loved to shake hands, and he was excited to do so when greeting men after church. Although he frequently practiced shaking hands with his community builder, Clarence had a very tight grip, and it was difficult for him to release the other person's hand. This may have been due to his movement differences. Not understanding Clarence, over time the men of the church began to avoid him. It became apparent that this was not a welcoming congregation.
Clarence had a repertoire of redundant phrases that described him in a negative way. These phrases did not lend themselves to traditional forms of conversation. People asked the community builder if Clarence were able to understand what they were saying. The community builder explained that repetitive comments are just one way he communicated. She told them that interaction with others was important to him and that he wanted to meet new people. This was to little avail; eventually, most people Clarence met stopped trying to interact in a meaningful way.
The community builder began focusing attention on activities that didn't center around conversing. She learned Clarence liked to sing and had a good voice because he readily joined in the singing of the hymns at church services. She pursued various singing opportunities and found a local barbershop chorus. Clarence was hesitant to sing in the presence of the chorus members, preferring to talk while they were singing. The singers resented the disruption, so Clarence and his community builder looked elsewhere for musical possibilities. Clarence joined a volunteer band that played at nursing homes around the city. He played the bongos with great enthusiasm and with greater volume than the other musicians. The band member who had invited Clarence to join the group understood the importance of Clarence's participation. He managed to smooth over his “enthusiasm” with the rest of the musicians. Unfortunately, when this member left the band, the others requested that Clarence join them to perform only at his own nursing home.
An ongoing challenge facing Clarence was the frequent change of community builders. Each of the four community builders who supported him for a portion of the 3-year process needed time to get to know Clarence and gain his confidence, only to be replaced (for a variety of reasons unrelated to Clarence) by someone new. This limited the knowledge base and level of mutual comfort necessary to support Clarence. Differing approaches of the community builders had varying success. For example, one person, not understanding the goals of community building, tried to work with him as a teacher would work with a student. She attempted to help him recognize and name colors and improve particular skills. Clarence didn't “improve,” and she was frustrated. Clarence responded best to the community builders who were willing to accept him as he was, to see his positive qualities, and look for ways to enhance them.
Clarence loved riding in cars. In a team brainstorming session with other community builders from the project, all opportunities for riding in cars were explored. “Meals on Wheels,” a nutrition program of a local aging agency, seemed to be a perfect match—and it was. Weekly, Clarence rode with a volunteer driver, greeting the lunch recipients while delivering their meals. As a Meals on Wheels volunteer, Clarence could be around people and help others, two things he truly enjoyed. He loved this role. The driver, a college student volunteer, enjoyed Clarence's company as well. Unfortunately, he moved out of state, and another driver was not found. Community membership for Clarence was still an elusive goal. However, many new clues as to how he might successfully participate in the community had been uncovered.
Jack: “I'm a carpenter.”
When Jack began his 3-year participation in the project at age 69, he had little involvement outside the nursing home where he had lived for the 20 years following his mother's death. He went to a weekly church service and had occasional meals out with brother or trips with his sister to a doctor's appointment or shopping. Jack and his first community builder, Jean, explored various community activities two to three times a week. They visited indoor and outdoor places, loud as well as quiet locations, and both structured and unstructured activities to discover which environments and settings worked best for Jack. Because Jack did not use many words, Jean needed to listen with more than just her ears to discover his preferences. Jean watched Jack's gestures and facial expressions to pick up cues. She learned he was interested in construction work because he always pointed out new building sites while they drove around town. Jean also learned Jack loved being around young children because he would wave or say “hi” to them in the mall.
Because she had discovered Jack liked construction sites, Jean thought he would enjoy working with his hands. She found a community woodshop that Jack joined. It appeared to have good prospects for social connections because many of the members were retirees of Jack's age. With Jean's assistance, he sanded and painted parts for toys sold locally as a fundraiser project at the shop. He enjoyed the woodworking, but after several months he had not connected with any of the other woodworkers. The other members were too engrossed in their own projects to provide assistance to Jack or engage in conversation with him. Jean was seen as the only one who could help Jack; the woodshop coordinator asked her not to leave while Jack was there.
After a year at the woodshop, Bob entered Jack's life. Bob, whom Jean knew personally, was an older gentleman who also had an interest in woodworking. Jean took the time to explain the community building process to Bob. She talked about the obstacles she had faced in trying to connect Jack with the other woodworkers, and she explained that they had misperceived her role. Initially, Bob was hesitant to be alone with Jack because he found it difficult to understand Jack's communication style. Jean remedied this by spending time with Bob and Jack while they worked in the woodshop and took them to lunch, allowing them to get to know each other better. Spending time together paid off for Bob and Jack. Bob commented, “We just seem to work hand in glove.” Within a few months, Bob was picking up Jack at the nursing home and taking him to the woodshop. Transportation by the community builder was no longer necessary.
Outside the woodshop, Jack and Bob's friendship developed slowly. They did go to see the tomato plants Jack planted, and Bob took Jack out to lunch on a couple of occasions. The community builder helped facilitate their growing relationship by taking Jack shopping for Christmas and birthday cards for Bob. When Jack won a gift certificate for sandwiches at a local sub shop, it was Bob whom Jack wanted to take to lunch.
Jean also followed up on Jack's interest in children. After checking out a few child care centers, it was decided the YMCA would be the best match as a site for Jack to take on the role of a foster grandparent. The site seemed a good fit with both his interests and personality. Jean discovered Jack did best when he was in settings with lots of activities. Because the child care room is a drop-off center for parents who are exercising, children are always coming and going, and activities are ongoing. In addition, as a volunteer Jack received a free membership. This meant Jack could enjoy the basketball court and the track, and he learned how to ride an exercise bike.
Jack volunteered there one day a week. At first, he was unsure how to interact with the children. He stood at a distance from the children with his arms folded. He seemed anxious to leave after 5 minutes. However, the community builder decided to pursue this role because it was obvious from his facial expressions and his excitement at the prospect of going to the YMCA that he enjoyed being there and seeing the staff and children. Jean continued to take Jack each week and stayed in the child care room with him while she encouraged him to play with the children. It had been such a long time since Jack “played” that he was uncertain how and what to do. Jack and Jean's persistence paid off. Nine months after starting, Jack was spending up to an hour in the child care room. He was playing with the children, helping pick up toys, and comforting children who were upset. The child care coordinator, Carol, commented on Jack's popularity, “The reaction of the children when Jack comes into a room is just wonderful. The children come running to him.”
Almost 2 years after Jack started volunteering at the YMCA, Jean's role had only marginally shifted; she was still providing transportation and was remaining in the building while he worked. Although Jack's relationship with the YMCA staff did not extend outside the facility, he had gotten to know them, and they enjoyed his enthusiasm, sense of humor, and warmth.
When Jean was unable to find someone at the YMCA to provide transportation for Jack, she arranged for him to ride the public transit's accessible van. Jack liked riding the van to and from the YMCA, which he soon did on his own. His sister paid the monthly $15 bus fee for a short period and then informed the community builder that she could not pay it every month. When the YMCA Executive Director heard about the situation, she asked staff and board members if they would contribute toward Jack's bus pass. They donated enough money to pay for one year's worth of bus passes. As the Executive Director said, “He has done so much for us, we don't want to lose him.”
At the nursing home, some of the staff viewed Jack as uncooperative and attention-seeking. He had diabetes requiring daily insulin injections. Because some nurses were not always careful when pricking Jack's finger to check his blood sugar level and then giving him his injection, there were mornings that Jack refused to get up. The nursing home staff and Jack's family threatened him by telling him he couldn't go out with his community builder if he refused to have his finger pricked. In effect, they were treating Jack's access to the community as a privilege that could be taken away at will. To avoid punishing Jack and to support his independence, the community builder suggested the staff teach Jack how to prick his own finger. Once Jack was given this opportunity, staff members discovered that he was more cooperative in getting ready in the morning.
When Jean left her job to relocate, Jack was introduced to a new community builder, Peggy. After her first day at the YMCA with Jack, having seen how little assistance he needed from her, Peggy suggested to the staff that she spend some time away from the premises. They agreed, being ready to give the support Jean had been providing but found difficult to turn over to others. Soon, Jack was taking the initiative to do things on his own.
There were marked differences in the way Jean and Peggy saw their support roles. Jean had taken on the role of protector. She was concerned that something might go wrong or Jack would get hurt. Peggy saw Jack's potential and, with careful consideration, was willing to take some risks. Carol, the child care coordinator, told Peggy that Jack was more independent with the community builder out of the room. Jack had relied on Jean to make his decisions when she was around. Carol commented, “He is capable of doing so much more but hasn't been given the chance.” It became evident that an effective community builder is able to see limitless possibilities for participation and is resourceful in creating strategies to make it happen.
It was also helpful when the community builder was able to be flexible, patient, and comfortable with people from all walks of life. Jean was frustrated with the nursing home staff and criticized them if Jack was not ready to go when she picked him up on Tuesday mornings. Jean started arriving early to assist Jack. When Peggy replaced Jean, she noticed the staff members had become dependent on Jean to get Jack prepared to go. They would blame Jack for not being ready on time. Peggy did not get upset with the staff. Rather, she stressed how important it was for Jack to be ready to catch his bus and made helpful suggestions on how to assist him. She made sure to compliment the staff on their efforts and took the time to listen to them. Soon, Peggy began to see subtle changes. Staff members would apologize if Jack was running late or say it was not his fault, and they started asking more questions about Jack's work at the YMCA.
To help Jack communicate with others about his volunteer position, Peggy took pictures of him with the children. Jack gave the parents a photo and put copies in an album he enjoyed sharing with others. Sharing the photos helped solidify his ties with the people at the YMCA and afforded him an opportunity to be on the giving, rather than receiving end of things. Jack also shared his carpentry skills with people at the YMCA. When he donated one of his footstools to child care, he soon had several footstool orders to fill. The money he received was used to buy more materials. Jack found he had the chance to do something for other people, an opportunity that had been rare in his life. Every time another mother requested a footstool, Jack's face would light up with such pride. He started telling people that he was a carpenter.
Over time, Jack's role expanded at the YMCA. He volunteered at their fall and spring running events and was offered a volunteer position with their summer day camp. After 3 years of service, Jack was named the YMCA's Volunteer of the Year. Although Carol was no longer an employee of the YMCA, she sent a message of congratulations that was read the night Jack received his award: “Congratulations! I'm so proud to have had the opportunity to work with you. I miss your smile and enthusiasm.”
Discussion and Future Directions
For Jack and Rick, and to a lesser extent, Clarence, it was evident that the community building process made a positive impact on their social networks, bringing a variety of community relationships into their lives. In addition to the sources of social support that were fostered by the project, involvement in meaningful activities gave participants resources that could act as a catalyst for future relationships. For example, Clarence made gains in his ability to express preferences, and Rick developed several new interests and acquired greater self-confidence. These roles gave then something to share outside the activity setting and made them more interesting, richer people to get to know.
Close relationships take a great deal of time and concerted effort to cultivate, along with the plain good luck of the right interpersonal chemistry. Many of the social connections that developed for Rick, Jack, and Clarence did not become friendships wherein time was spent together outside of the activity. However, it became evident that the relationships that were restricted to participation in organizations and activities, even though they were not friendships per se, were valuable both intrinsically as a form of social support and as potential stepping stones to more intimate alliances. Church members, fellow volunteers, classmates, or work colleagues who share interests and experiences hold the possibility of becoming close friends (Snow, 1994). For the community members involved, the relationships provided an opportunity to dispel myths about people with disabilities and to promote understanding and acceptance.
In the coming years, provider agencies across the country will see increasing numbers of older individuals who have never had the opportunity to be welcomed and valued by their communities. The outcomes of the Community Membership Project for Rick, Clarence, and Jack (although a limited sample) illustrate that success in expanding social networks is linked to regular participation in highly regarded activities that are well-matched to the individual. For Clarence, there was difficulty in getting a connection to an ongoing community activity, and his experiences were the least favorable in gaining new social relationships. Jack participated in activities with the most consistency and longevity and had the greatest increase in his social network. He assumed community roles that were well-matched to his interests and abilities, roles that were viewed positively for a retired person. For Jack and others, getting a life outside the nursing home and the involvement of caring people who were not paid to be in their lives required a concerted effort. It meant getting to know them, creatively exploring possibilities, and deliberately nurturing budding relationships. As a flexible approach rather than a model, the use of staff members as community builders within the four-stage process described here may be a useful example for agencies seeking to implement more person-centered services for adults who are either working or retired.
This research was supported, in part, by funding from the Administration on Developmental Disabilities, Department of Health and Human Services (OHD 90 DD0291–02). Opinions expressed herein do not necessarily reflect those of the grantor. Names of persons referred to in the text, except the author/community builders, have been changed.
Authors:Jane E. Harlan-Simmons, MA, Research Associate (email@example.com), Peggy Holtz, MS, Research Associate, Jennie Todd, BA, Field Base Coordinator, and Maribeth F. Mooney, BA, Community Building Specialist, Indiana Institute on Disability and Community, Center on Aging and Community, Indiana University, 2853 E. Tenth St., Bloomington, IN 47408-2696.