Social Networks in Transition

Rose is a 22 year old student with a disability who is about to graduate from school. For the past three years, since moving from Haiti to the United States, she has attended a large urban high school in the greater Boston area. Although she speaks and understands some English, she is more comfortable communicating in her native language, Haitian Creole.

Outside of attending school during the week, Rose has spent most of her time home with her family. She is very shy and did not connect with her English-speaking peers at school. She rarely went out into the community, except to go grocery shopping for her mother.

Several months ago, during a discussion (through a translator) with one of her teachers, Rose revealed that her biggest desire for life after high school, besides having a job in culinary arts, was having friends to socialize with on the weekend. Through the support of her vocational rehabilitation counselor, Rose found a job as a dietary aide in a local hospital that has other Creole-speaking employees. Besides "showing her the ropes" at work, a co-worker named Elan invited Rose to go to the movies on their day off. Rose really enjoyed seeing her very first movie with her new friend!

We all have social networks. We have acquaintances, friends, family members, and people who spend time with us at work, at home and in the community. We depend on our social networks to function in all areas of our lives - when we make plans for the weekend, when we become ill, when we need a ride, a shoulder, a meal, a date.

The development of social networks is due to our participation in daily activity, be it work or play. In essence, every interaction we have is a social experience which may result in a relationship that will enhance our lives. Many people develop these networks naturally, but individuals with disabilities often need help to identify social supports (in any setting in which they participate) and to develop those supports. The type of assistance varies -- from identifying someone with an engaging personality, for example, to actual training and practice on having a conversation or making friends.

Social network development is of particular importance for students with disabilities, ages 14 and older, as they prepare to exit high school. Federal legislation, including the ADA, President's New Freedom Act, Olmstead decision, IDEA '97, and No Child Left Behind, all contain provisions that underscore the need for full participation of youth with disabilities in community life, including social, recreational and leisure options. In spite of these considerations, little attention has been given to non-work-related outcomes, such as recreation and relationships, in either IEP (Individual Education Program) or ITP (Individual Transition Plan) processes.

While most people agree that having friends is at least as important as making beds or balancing checkbooks, special education curriculum for students with intellectual disabilities has typically focused on functional skills during transition years (Schleien, Ray, & Green, 1997; Amado, Conklin, & Wells, 1990).

Some of this comes from a special education system that is set up to serve individuals until age 22, whereas most students without disabilities leave high school and move onto adult activities by age 18.

While these last four years (18 to 22) could be used to involve the individual in age-appropriate activities in community-based settings, schools offer the services, so schools become the primary setting for services (Falvey, Eshilian & Rosenberg, 2001). Organized activities at the YMCA, Boys and Girls Clubs, and summer camps have been outgrown (although organized recreation groups do exist for adults, most people use these opportunities to supplement their leisure time as social contacts begin to be the primary source of recreation). Another factor may be that developing friendships and finding enriching pastimes are less concrete activities than balancing a checkbook and, therefore, are more difficult to achieve.

The overall benefits of leisure and recreation for individuals with and without disabilities are well documented. These include physiological, psycho-physiological, economic, psychological and social benefits (Mahon, Mactavish, Bockstael, 2000; Schleien, Green & Stone, 2002), reduced social isolation, acceptance of differences, increased awareness of human rights, increased social skills and self-esteem, enhanced independence, enjoyment and improved social behavior, communication, physical fitness, as well as intellectual, emotional and social functioning (Bullock, & Mahon 1997; & Schleien, Heyne & Dattilo, 1995). In addition, participation in recreational activities can increase a person's ability to live in community settings, learn social interaction skills, and become active, rather than passive, participants in society (Sowers, 1995; Rynders & Schleien, 1991).

Nationally, there are examples of promising practices to assist youth with disabilities in becoming valued members of their communities. Examples include Best Buddies, Citizen Advocacy organizations, National Service Inclusion Project, and a person-centered planning process, "Whole Life Planning" (Butterworth, Hagner, Heikkinen, Faris, DeMello, & McDonough, 1993). Attention must be given to planning strategies that increase opportunities to develop and maintain relationships among individuals of varying abilities (Schleien, et al., 2002). Teachers and advocates for youth, as well as young people themselves, must learn to develop social networks that will last beyond high school and enable active participation in the more frequently used but less formalized settings of adult recreation (e.g., night clubs, concerts, theaters, health clubs, dating) (Komissar, Hart, Friedlander, & Paiewonsky., 1997).

Given that recreation and the development of friends (a foundation for social networks) is not high on the list of priorities when it comes to transition planning, the extreme isolation of individuals with more significant disabilities in their later school years (i.e., when their peers graduate) and after leaving the special education system is not acceptable. Parents of individuals with significant intellectual disabilities rate friendship and social relationship development as having greater importance than learning functional life skills (Thorin & Irvin, 1992; Hamre-Nietupski, Nietupski & Strathe, 1992). Parents complain that their children have no friends and no interests, and that this situation further deteriorates after they leave high school.

Research Study

A study by the Institute for Community Inclusion's Social Network project (funded by OSEP) examined the social networks of high school students with disabilities as they prepared to exit school. In the 2002-2003 school year, 34 students ages 17-22 years old from three urban high schools in Massachusetts took part in this study.

Of the 34 students, 16 were participants and 18 were in a control group. Participants were within one to two years of graduation, took part in person centered planning sessions and explored one or more activities, including competitive employment, postsecondary education and inclusive recreation while still in high school. Project staff provided initial support (travel training, education and job coaching) to participants in each of these environments to increase independence and model appropriate social interaction behaviors.

As the students grew more confident in their chosen activities, natural supports replaced the need for project staff. Additional characteristics include the following: 70% of students in the study were Caucasian and 15% were African American or Hispanic; 89% students were served in segregated "life skills" classrooms in their high school, while the remaining 11% received services in resource rooms; and 82% of study participants spoke English as a primary language. All students in this study were connected with the Department of Mental Retardation (DMR) and many also were clients of the state vocational rehabilitation agency.

The research methodology included quantitative measures that were administered to both control and participant groups and included the Social Network Interview Guide (pre/post) (Butterworth et al., 1993), ARC Self-Determination scale (Wehmeyer & Kelchner, 1995), Quality of Life Measure (Schalock & Keith, 1995) and Autonomous Functioning Checklist (Sigafoos, Feinstein, Damond & Reiss, 1988). Several in-depth, semi-structured interviews were conducted with individuals from both control and participant groups to supplement the quantitative measures. Project staff facilitated focus groups with students in special education (from "life skills" classrooms) and general education, parents of students in special education and special educators.

During the course of this study, 14 of 16 participants increased the size and complexity of their personal networks. All five of the participants who graduated during the 2002-2003 school year expanded their networks and type of relationships (e.g., shifted from teachers to co-workers). Participants reported more autonomy than non-participants, particularly in making choices about leisure or free time activities.

Those who increased the number of peers or friends in their network stated that they experienced greater overall life satisfaction and high levels of social belonging. When asked about taking a culinary arts class at community college, one 19-year old student (from a life skills classroom) responded, "You get to eat the food... work with some of the other kids, get to know them and they get to know you and that's good too. And all those boys."

A class of students in "life skills" participated in a focus group on friendship and social activities. They found that their "friends" were the same students with whom they had traversed the special education system -- starting way back in early intervention. These students had few opportunities for social interaction outside their segregated special education classroom. Most would describe general education students as acquaintances who they encountered via the work program designed for special education students (e.g., emptying recycling bins from classrooms), but did not feel that these individuals were their friends. Several students were able to articulate how they would forge a new relationship, but the majority were uncertain as to the where and how to meet new people.

Although most of these students had been in their high school from four to eight years, many lacked an awareness of extracurricular activities (e.g., clubs, senior prom). Nearly all the students in this class expressed the need for adult assistance (i.e., parents, teachers) to plan and implement social activities.

Conversely, a focus group conducted with 11th grade general education students revealed that they had many opportunities to make friends through extracurricular activities. Most reported having autonomy over their social and free time activities. Students in general education described highly developed networks comprised of people from school and part-time jobs, family members and through a variety of recreational activities.

Special education teachers also had a unique perspective on how they viewed their students when socializing and participating in activities. Teachers observed students in special education having friendships with younger students rather than same-aged peers. They also reported their student's referring to themselves as "sped kids." With this label came the belief that these students were unable to complete certain tasks or participate in certain activities because they were "sped."

Another barrier to students engaging in after-school activities was lack of transportation options once the school day was over. Several teachers described certain classroom activities to help students increase their awareness of social opportunities. "We read the daily bulletin, which lists the activities that are happening at the school (including after-school clubs). We talk about going to work and finding fun things to do in the community (e.g., joining a gym, taking an art class)."

Parents had numerous concerns about their transition-aged child's social life. All parents that participated in the focus group stated that they were worried about being their child's primary support as they entered adult life. They were frustrated that school staff did not see it as their place to assist with social skill development. Parents, like students in special education, reported that there were few opportunities to break out of the special education cycle.

Opportunities to interact with general education students came from volunteer programs (the student with a disability always being the "recipient"), and that peers without disabilities socialized out of "charity." A parent of one 17-year old commented on her daughter's experience participating in inclusive recreation. "For Susan to be part of the high school track team gave her the sense that she was part of the high school community. Going to practice after school, the meets and weekend pasta parties are part of a typical high school experience. Now she could go to school and have people from the team say ‘hi’ in the hall and eat lunch with her in the cafeteria."

Strategies for Developing Social Networks

While there is no "recipe" to developing a social network for students who are exiting secondary school, there are several strategies to consider. Examining an individual's current network will determine who provides him or her with a certain type of support (social, tangible, guidance).

One method of documenting a network is by leading the person through a series of guided questions such as: "Who do you talk to if you wanted advice or wanted help in making a decision?" or "Who do you do things with on the weekend?" Often by exploring an existing network it can be determined where an imbalance in network members and supports may occur.

For most people without disabilities, personal networks are highly developed and may include co-workers, neighbors, family members, classmates and friends from a variety of settings. However, youth often identify family members or paid support staff (such as a special education teacher, one-to-one aide, personal care attendant) as the sole person who contributed physical and social support. This is due in part to caregivers being the primary, often times the only, consistent people in the life of an individual with a disability. Seldom are same-aged peers or individuals from the community identified who provide friendship or social opportunities. Once a student's current network is identified, it must be determined how this network will be affected upon leaving high school (e.g., a student whose network consists mostly of teachers and school staff will lose these supports when no longer in school).

In preparing for adult life, the focus should be on shifting from more formal supports to natural supports in the community. To increase opportunities for network development, students should be given opportunities to express preferences and interests for the future and to explore those interests while still receiving support from the Local Education Agency.

Identifying preferences for postsecondary activities is the initial step to assist a student in developing new social connections. Typical educational planning processes (IEP and ITP) often do not honor an individual's future dreams and goals. Person-centered planning methods, such as whole life planning, futures planning or MAPS, allow students to articulate their skills, preferences and interests and to develop a plan to achieve their goals. Being competitively employed in a job of choice allows for potential relationships with supervisors and co-workers. Participating in an inclusive postsecondary education experience increases opportunities to interact with peers who share similar interests in and out of the classroom.

Recreation activities, such as joining a local gym or taking dance lessons allow for contact with individuals from the local community. The possibilities for youth to create new social relationships are endless. However, preparation is essential to ensure that individuals are successful in their endeavors.

Upon determining an area of interest, students may need guidance on how to pursue joining an activity. Typically, for people without disabilities planning and taking part in recreation activities is an informal process. However, for students with disabilities who may have never arranged their own social and leisure pursuits, a more formal approach may be necessary in order to get started.

A useful method in assisting students to gain more independence in planning their own activity is to create a "Social/Recreation Folder." Contents of this folder may include recreation surveys, activity resources, key questions to ask when researching a particular interest (e.g., the cost of the class), a recreation action plan, transportation information (para-transit and/or public transportation options) and a calendar to track dates and times of events.

Observing an activity prior to making a commitment to participate is helpful in determining if the activity is appropriate and a good match for the student's interest. Potential barriers to participation should be explored and supports identified to ensure full participation.

Lack of opportunities to participate in age-appropriate, inclusive education, employment and social environments contribute to a lack of social contacts. Social networks are more likely to develop when students have opportunities to participate in typical, age-appropriate education, employment and recreation. Educators and adult support professionals need to incorporate social networking strategies into service models. By increasing the expectations placed on students with disabilities during their high school years, students will be able to create a diverse web of supports that will carry them through their adult life.

Comments about this article may be sent to Beth Farrow, Institute for Community Inclusion, UCED, University of Massachusetts Boston, beth.farrow@umb.edu

References:

Amado, A.N., Conklin, F., & Wells, J. (1990). Friends, a manual for connecting persons with disabilities and community members. Human Services Research and Development Center.

Bullock, C., & Mahon, M. (1997). Introduction to recreation services for people with disabilities: A person centered approach. Champaign, IL: Sagmore.

Butterworth, J., Hagner, D. Heikkinen, B., Faris, S., DeMello, S., & McDonough, K. (1993). Whole life planning: A guide for organizers & facilitators. Boston, MA: Institute for Community Inclusion.

Falvey, M., Eshilian, L., & Rosenburg, R. (2001). In P. Wehman (Eds.). Life beyond the classroom: Transition strategies for young people with disabilities (3rd ed., pp. 127-143). Baltimore, MD: Paul H. Brooks.

Komissar, C., Hart, D., Friedlander, R. & Paiewonsky, M., & Tufts. (1997). Don't forget the fun. Institute for Community Inclusion. Boston, MA.

Mahon, M. J., Mactavish, J., Bockstael, E. (2000). Making Friends Through Recreation: Social Integration, Leisure and Individuals with Intellectual Disability. Parks and Recreation 35, (4) 25-40.

Schalock, R. L., & Kieth, K. D. (1995). Quality of life student questionnaire. Worthington, OH: IDS Publishing.

Schleien, S. J., Green, F., & Stone, C. (2002, July/August). Making friends within inclusive community recreation programs. TASH Connections, 16-23.

Schleien, S. J., Ray, M. T., & Green, F P. (1997). Community recreation and people with disabilities: Strategies for inclusion (2nd ed.). Paul H. Brooks: Baltimore, Md.

Sigafoos, A. D., Feinstein, C. B., Damond, M., & Reiss, D. (1988). The measurement of behavioral autonomy in adolescence: The Autonomous Functioning Checklist. In S. C. Feinstein, A. H. Esman, J. G. Looney, G. H. Orvin, J. L. Schimel, A. Z. Schwartzberg, A. D. Sorosky, & M. Sugar (Eds.), Adolescent psychiatry: Developmental and clinical studies; Vol 15. Annals of the American Society for Adolescent Psychiatry (pp. 432-462). Chicago: University of Chicago Press.

Wehman, P. (1996). Life beyond the classroom: Transition strategies for young people with disabilities (2nd ed.) Baltimore: Paul Brookes.

Wehmeyer, M.L., & Kelchner, K. (1995). The Arc's self-determination scale. Arlington, TX: The Arc National Headquarters.