Best Practice of Inclusive Services: The Value of Inclusion
By Catherine Veronica Nolan
National Center on Accessibility
Inclusion is more than allowing people with and without disabilities
to participate in the same activity. In order for inclusive services
to be successful, inclusion must be a value that is shared by all
parties involved including: agencies, staff, families, participants,
and the greater community. With appropriate training and education
on inclusion and disabilities, managers can ensure that their employees
are able to provide services that embrace the value of inclusion.
Since the passage of the Americans with Disabilities in 1990, recreation providers have made structural modifications to accommodate people with disabilities in various programs. However, it has long been evident that more than structural modifications would need to be made in order for individuals with disabilities to be fully included into programs and have the same opportunities to success as individuals without disabilities.
Using two different approaches of system change, Together We Play, an inclusion program and partnership led by the Black Hawk YMCA, and the Inclusion and Accessibility Services of the St. Paul JCC have been able to successfully cultivate an inclusive attitude within their agencies. Their programs have been successful in not only ensuring that people with disabilities can successfully participate in the activities they want, but also in facilitating a welcoming, and accommodating environment that is conducive to developing friendship and sharing experiences.
What is inclusion?
According to Stuart Schleien, Fredrick Green, and Charlsena Stone (1999) the concept of
inclusion is a continuum of three levels of acceptance.The first level is known as physical
integration . Physical integration is when a “person's right to access is recognized and
assured” (Schleien, et al. 1999), ¶ 3). This level of inclusion was mandated by the
Architectural Barrier's Act of 1968, which stated that “all buildings receiving federal funds
to be made accessible to people with disabilities,” and expanded by the American with
Disabilities Act, which mandated physical integration to all public facilities regardless of
government funding (Schleien, et. al, 1999, ¶ 3). Physical integration serves as
prerequisite to the other two levels of inclusion.
Four young friends with and without disabilities work together to clean up toys
The second level of inclusion is known as functional inclusion . Functional inclusion “refers to an individual's ability to function within a given environment” (Schleien, et. al. 1999, ¶ 4). The ADA mandates that recreation programs must provide accommodations for people with disabilities to give them the same enjoyment and success as those without disabilities (Bullock & Mahon, 1997, as cited in Schleien, et al. 1999). In order for functional inclusion to occur, staff must have adequate knowledge and resources to adapt activities appropriately.
About this video: April McHugh,
the teen director and assistant camp director at the St. Paul JCC,
shares her thoughts on the value of inclusion shared by staff and participants alike,
at the JCC.
Only once the first two levels of inclusion have been met, the final and highest level, know as social inclusion can be achieved. Unlike the other two levels, social inclusion cannot be mandated. Instead, social inclusion, which is “one's ability to gain social acceptance and/or participate in positive interactions with peers during recreation activities,” must be internally motivated (Schleien et al. 1999, ¶ 5). It is only by embracing inclusion as a value that this level can be achieved.
Inclusion as a Value
To value inclusion, one must start by valuing the individual and appreciating that each person is different. Shafik Abu-Tahir stated, “Inclusion is recognizing that we are one even though we are not the same (as cited in Dattilo, 2002, p. 26).” He furthers this point, stating, “Inclusion allows people to value differences in each other by recognizing that each person has an important contribution to make to our society (as cited in Dattilo, 2002, p. 26).” Sylvester, Voelkl, and Ellis, (2001 as cited in Klitzing & Wachter, 2005, p. 64) expand upon this idea explaining that recreation inclusion “refers to empowering persons who have disabling conditions to become valued and active members of their communities through sociocultural involvement in community based leisure settings.” The term sociocultural is significant here as it emphasizes that diversity is embraced and not lost in inclusion. Recreation experiences that embrace this value of inclusion allow for the facilitation of meaningful relationships between people with and without disabilities. It is only through the development of these meaningful relationships that stereotypes and stigmas can be eliminated.
Barriers for Individuals with a Disability
Source: Smith, Austin, Kennedy, Lee and Hutchison, (2005).
Inclusive and special recreation: Opportunities for persons with disabilities (5th ed.).
Boston: McGraw Hill. p. 81
While it is evident that many of the barriers faced by individuals with disabilities are external, a person with disabilities is often times faced with constraints resulting form their own physical, emotional and cognitive limitations. These limitations or barriers reside within the individual and can be temporal or permanent. Often times these barriers that block fulfillment of individual needs, desires, and interests may arise or be related to causes such as parental over protection, inadequate educational opportunities or segregation from peers (Smith, Austin, Kennedy, Lee and Hutchison, 2005).
Every role is important! High School students rehearse the play Fiddler on the Roof
Despite an individual's ability to cope with intrinsic barriers, environmental barriers may also prevent an individual from participating in recreation activities. These barriers can be physical such as architectural or trees and mountains, or these barriers can be imposed by society or economic conditions such as negative attitudes and finances. While an individual may be able to overcome intrinsic barriers through personal action because environmental barriers are imposed on the individual, the individual may feel helpless to overcome them.
Even the agencies with the best inclusive service practices, and a welcoming atmosphere can be intimidating to a person with special needs. Through better understanding the barriers faced by individuals with disabilities and the challenges that these barriers present, managers can provide staff with training that will optimize their ability to work with clients and program participants. Inclusion requires teamwork, involving all parties both in and outside the agency to not only collaborate on ideas to help participants overcome challenges they may face, but also to collaborate on program and facilitation strategies in order to bring about optimal services. While recognizing the need to include individuals with disabilities into to programs and the challenges associated is a step in moving toward full inclusive services, true inclusion can not be attained without system change.
System-directed change can be generated from “top-down” or from “bottom up” approaches (Mandell and Schram as cited in Scholl, Dieser, et al., 2005). Top down system change occurs from administrative or legislative directives, which was the case in the St. Paul JCC , in which the staff members of the JCC saw a need in the community and felt the need to respond. Bottom up system change occurs by people force change through the weight of their numbers and the power that weight can mobilize. Through a coalition desiring change, the Together We Play program formed. Though different modalities of change served as catalysts to bring about the establishment of inclusive services in each of these organizations, true inclusion takes team work from all parties involved. This principle is clearly demonstrated in the services provided by the St. Paul JCC and the Together We Play program.
St. Paul JCC
The Jewish Community Center of the Greater St. Paul Area is a non-profit social service agency whose mission is to strengthen Jewish identification through educational and cultural programs; enhance social, emotional, intellectual and physical development; and support families. The JCC was created by and primarily for the benefit of the Jewish community; the Center welcomes everyone regardless of race, religion, national origin, age, gender, disability, sexual orientation or ability to pay. The goal of the St. Paul JCC is to be proactive, inclusive and supportive. The JCC invites children and youth with disabilities or special needs to participate in inclusive settings at the St. Paul JCC camps and programs. There are no separate services for individuals with disabilities at the JCC, but instead all persons, both those with and without disabilities, are provided opportunities to participate in the same programs.
Top Down Approach
The St. Paul Jewish Community Center began offering segregated services for individuals with disabilities in the late 1970s. In the early part of 1984, there were currently no programs for individuals with special needs in place, and staff noticed a decline in attendance of the families with children with disabilities. The staff made a decision to have a meeting with these families to better understand how the Center might serve them. At the meeting, it became evident that parents felt their children needed opportunities to interact socially with peers of their own age without disabilities.
With endorsement from the Board of Directors, and assistance from Dr. Stuart Schleien, an associate professor in Therapeutic recreation at the University of Minnesota , and Richard S. Amado, licensed behavioral psychologist, a grant proposal was created. This grant was for one year from the State of Minnesota Developmental Disabilities Council . The purpose of this proposal was to include 12 children and youth with disabilities into the Center's regular programs and classes. With the provision of funding, the JCC 's Inclusion and Accessibility Services department was formed.
In the fall of 1984, the foundation of the program was laid. A committee was formed including: a) specialist in related fields, b) parents of children with disabilities, c) interested leaders of the JCC, and d) a part time Certified Therapeutic Recreation Specialist who was hired to oversee the facilitation of inclusive services (Heyne, Amado, & Denelle, 1987). The committee reaffirmed parent's wishes and was founded on the basis that any JCC program could be integrated successfully given proper support and the need for other segregate experiences would no longer be provided.
The first year's pilot project demonstrated there was an overwhelming need that existed for children with disabilities to participate in settings that allowed for socialization with peers without disabilities (Heyne et. al, 1987). The success of the first year prompted the proposal of a second grant to be written. For the next two years, the JCC received federal funding through the U.S. Office of Special Education and Rehabilitative Services. As a result of this funding the program expanded to include 24 children ages three to 21 with cognitive and/or physical disabilities into a large variety of JCC classes and programs. The professional staff position of the Certified Therapeutic Recreation Specialist was made full time to best meet the demands of the growing department.
The JCC Six Step Process of Inclusive Programming Cycle
Courtesy of Beth Gendler, CTRS
Process of Inclusion
The Inclusion and Accessibility Services at the St. Paul JCC operate using a six phase programming cycle. In this model, the CTRS does not work directly with clients, but facilitates the integration of individuals with disabilities through training and supervising inclusion staff, serving as a resource for parents, and assisting program staff by trouble shooting, and brain storming ideas to better accommodate individuals with special needs (Beth Gendler, personal communication, November 13, 2005 ). The six phases of the cycle include: (a) program promotion, in this phase the CTRS assists with outreach to the community regarding the availability of inclusive services at the JCC, which is done primarily through printed brochures and newsletters where there is an option on the registration form that invites parents with children with disabilities to request inclusive and accessibility services; (b) registration and assessment, upon receiving registration forms which indicate a child may need accommodations, the CTRS will first send out a welcome letter and inclusion questionnaire to families who stated their child had special needs on the registration form, and then contact each family and make arrangements to meet them, and if possible, the CTRS will also observe the child in a school to best understand what accommodations a participant may need;
(c) build supports and accommodations, in this phase the CTRS and each family will establish personalized goals for the participant while participating in the program, as well as determining accommodations and formulating arrangements; (d) training, staff is trained by the CTRS both in groups as true inclusion requires a group oriented approach to problem solving and on an individual basis so that each inclusion facilitator learns how to best assist the participant they will be assisting (Beth Gendler, personal communication, November 13, 2005); (e) Implementation of the program, in this phase the CTRS serves to make observations, and offer suggestions and adaptations to the program; (f) Evaluation and documentation, in this phase participants, parents, program leaders, and inclusion facilitators are given the opportunity to complete program evaluations and offer suggestions for improvements, and additionally, every three years, the community is asked to fill out a needs assessment to better help the JCC determine unmet needs in the community. It is important to note that this inclusion model is cyclical, and steps in one phase serve to be a support or redirect the goals and processes of other stages.
Maxie works one on one with a leisure facilitator to help him stay on task during swimming lessons
About this video:High School students with and without
disabilities work together to make their annual play, Fiddler on the Roof, a success for the
entire community to enjoy! Video courtesy of the National Center on Accessibility.
Because inclusion is for everyone, it is also crucial that organizations reach beyond the walls of their own facility into the greater community. At the St. Paul JCC , the CTRS also serves as a resource and advocate for inclusion in the neighboring community by serving on committees and engaging in partnerships with other social service agencies. The CTRS represents the JCC as part of the Jewish Community Inclusion Consortium, which is composed of local temples, synagogues, schools and social service agencies and serves as community wide response to inclusion needs for individuals with disabilities. Additionally, through a partnership with the Jewish Family Services of St. Paul and the Jewish Mental Health Education Project, the JCC provides a monthly support group for parents with children with disabilities. It is through these relationships with other organizations that inclusion can have an extensive impact.
The most powerful evidence of effective inclusion can often be found, through the testimonies of those who experience it. Both parents and their children with disabilities are impacted by inclusion. Here are their stories.
About this video:Gus, participant of nine years,
shares his experiences while attending the St. Paul JCC. Video courtesy of the National
Center on Accessibility.
Terry, a 3 rd grade boy with Landau-Kleffner syndrome, has been a JCC School-Age Childcare (SAC) and summer camp participant since 2003. Terry experienced severe challenges during his first year of participation and was often unable to participate in programming due to his behavior. JCC staff worked with Terry's family and his school to come up with strategies and solutions that would provide him with a consistent, supportive and nurturing environment. Program staff received extensive training to help them support Terry in the inclusive setting at the JCC. These efforts, coupled with Terry's familiarity with the JCC setting have enabled him to participate in most activities with great success. Last summer, he performed alongside his peers during the final performance and exhibition at the end of camp. He had several spoken lines in the play, and performed dance numbers with typical partners. Terry continues to participate in the School-Aged Childcare program at the JCC. Several of his friends from Camp also attend SAC. With their support and additional staff training, Terry has been able to participate with minimal staff assistance. He was invited to a birthday party of one of his typical peers for the first time ever this fall. The camper and his family are pleased with his success. His inclusion at the JCC has provided the other campers with valuable experience in inclusion and acceptance of children with disabilities.
At Camp Butwin last summer, Joshua, a 5 th grade camper with autism was able to overcome severe anxiety and participate on the high ropes course for the first time since he began attending camp 3 years ago. He climbed the rock wall, attempted the cherry picker and did the zip line for the first time this summer. The other group members encouraged him, cheered his accomplishments, and helped other campers in the group develop patience and empathy. When one typical camper began to express frustration with the amount of time it was taking for Joshua to ascend the course, another typical camper said, “Josh is trying to overcome one of his biggest fears right now. It's our job to help him.” At the end of the summer, one of the typical kids in his group said, “the best part of camp was when Josh did the zip line and we all helped him and cheered for him.”
Everyone takes part in “Band Practice” at the JCC!
Parents and families also benefit from the inclusive programming at the JCC. One parent wrote last spring: “I'd like to tell you how meaningful my family's connection with the JCC has been. I am a single parent of two children, one of whom has a developmental disability. We are very lucky to be able to turn to the JCC for support. I often drop my children off at the Kid's Club Room while I study or exercise. My disabled son attends many recreation programs, and when necessary, an aide is made available. The JCC's commitment to inclusion means that there will be no embarrassment for me if my son should have a hard time.”
Another parent pointed out the importance of inclusive experiences at the JCC for her son's ongoing success: “ I think it was Marc's best summer ever-- and he seems so well adjusted at school this Fall. I think a lot of that has to do with the social growth he made this past summer at camp. Thanks for everything!”
Together We Play
Family YMCA of Black Hawk County , Iowa
The Together We Play program has developed an integrative approach to provide recreation serves in the local community. Together We Play is an inclusion program and partnership lead by the YMCA. Their mission is to “ensure children and youth with and without disabilities the same recreational, educational and social opportunities by providing means to connect people to existing community resources and not duplicate services (Scholl, Smith, & Davidson, 2005).” Together We Play works as a catalyst to build relationships between families with children who have disabilities and agencies that provide recreational programs for the local community.
TWP was formed through the efforts of a coalition consisting of local United Way Agencies, health and human service agency administrators, recreation professionals, university faculty members, parent of children with disabilities and other educational professionals in the Cedar Valley region of Iowa . The coalition examined the existing challenges and opportunities to providing inclusive services, and recognized that agency staff of existing recreation and after-school programs did not have the understanding, skills, or training to integrate youth with disabilities into existing community programs. In addition, the coalition determined that the community lacked the infrastructure for interagency collaboration to link children with disabilities with various services (Scholl, Dieser, Davidson, 2005). The coalition concluded that the best solution to address these challenges was for various agencies to work collaboratively to enhance existing services.
The goal of Together We Play is to encourage the widespread adoption of inclusive recreation practices in the community thorough:
building the capacity of parents by sharing information about community recreation options, building the capacity of children with disabilities by teaching recreation skills and supporting them to become active in a variety of community programs, and building the capacity of supervisors, managers and program staff of mainstream recreation programs by providing them training in inclusive recreation practice, access to necessary adaptive equipment, and extra staff to provide necessary and reasonable accommodations. (Scholl, Smith, et al., 2005)
To meet these goals, a service delivery model was developed.
Together We Play Service Delivery Model
Source: Scholl, K., Smith, J. & Davidson, A. (2005).
Agency readiness to provide inclusive recreation and after-school services for children with disabilities. Therapeutic Recreation Journal, 39(1), 50.
The Inclusion Process
With the provision of start-up funding from three community foundations, the coalition hired a certified therapeutic recreation specialist (CTRS) to assist the community with inclusion. The local YMCA provided basic administrative support. The role of the CTRS was to coordinate the development of the interagency infrastructure through numerous tasks including (a) collaborating with various education, medical, and social service staff in a team-oriented approach to deliver inclusion services; (b) providing resources and information on disabilities to agencies' recreation staff and assisting them in adapting their programs in the least restrictive and most inclusive manner; (c) assessing and documenting clients' abilities and progress in conjunction with their Individual Education Plans (IEP); and (d) evaluating the TWP program to ensure that goals and outcomes were being met in order to gain and retain program funding (Scholl, Dieser, et al., 2005).
In the model, the CTRS does not deliver community recreation programs but functions as a resource to a multitude of community members to coordinate the inclusion process that best serves the child, parent and recreation agency. The CTRS regularly interacts with:
(a) supervisors, instructors and coaches of recreation programs as well as before and after-school programs to assist them with the necessary accommodations (e.g., building staff competencies, removal of architectural barriers) to maximize successful participation for everyone – children (participants), parents, and agency staff; (b) the parents of children with disabilities participating in the general recreation programs by providing additional information and education regarding available recreation and after-school programs; (c) referral agencies, such as the local hospital, Exceptional Persons, Incorporated (EPI), Department of Human Services (DHS), or Area Education Agency, to exchange information on the various options that might assist in covering the cost of the inclusion experience for the child; (d) the leisure companions (university students) who worked for the TWP program; and of course; and (e) the children and youth participating in the community recreation and education programs by providing activity assessments and participation support children with disabilities. (Scholl, Dieser, et al., 2005)
How it works
TWP worked with children between the ages of 5-15 and had disabilities such as cerebral palsy,
autism, spina bifida, attention deficit hyperactive disorder (ADHD), learning disability (LD), behavior disorder (BD), Down's Syndrome or mental retardation, seizure disorder, or bipolar disorder (Scholl, Dieser, et al., 2005). Each child was assessed by a CTRS to determine skill level to ensure that each child would be enrolled in the appropriate program. Assessments involved three parts: The Annual Information Form (AIF) which requests information about the child's physical abilities, mobility, dietary restrictions, communication and personal care needs, behavior/personality and swimming abilities; a leisure interest survey; and an interview with the child, the child's teacher, and/or their social worker. The leisure interest survey focuses on identification of specific leisure activity interests, as well as preferred leisure style and barriers to community participation.
It’s all about team work! Youth participate
in the TWP program participate in a team building activity.
A leisure companion encourages a boy during an activity.
After assessments have been completed, the CTRS, parent and child work together to find the appropriate programs. In most instances, children participating in recreation activities would be accompanied by a leisure companion to provide assistance. Leisure companions are college students majoring in therapeutic recreation or special education who were hired and trained by the CTRS who worked on a part time basis. Prior to initial contact with the participant, the leisure companion received 1:1 training with the CTRS specifically related to the child's ability and support needs as stated on the child's AIF . The role of the leisure companion was not to facilitate the actual recreation activity, but to assist in the facilitation of the child's goals and assist with daily living tasks including toileting, dressing, etc (Scholl, Dieser, et al., 2005). After each recreation or after-school session, the companion documented the participant's progress toward accomplishing the individual goals, significant incidents, and any other situations that the leisure companion observed.
Inclusion service to community agencies
The community inclusion service delivery model is unique because here, the CTRS acts as a community resource for over 26 public and private recreation agencies in the area. The CTRS provides training for program staff at local agencies at no cost. Services to local recreation and after-school agencies include: “(a) in-service i nclusion training for agency staff; (b) hiring, training, and scheduling of leisure companions; (c) coordinating the sharing of adaptive equipment needs among agencies; and, (d) locating existing inclusion resources within the community (Scholl, Dreiser et al., 2005, p. 13).” Full and part time staff at each agency also receiv ed training specifically dealing with issues and concerns relevant to that particular agency's inclusion practices and program implementation. The CTRS also facilitated the collaboration of various agencies to form partnerships that would create the greatest impact on the entire community, which resulted in “extensive in-kind support and commitment through the provision of space and supplies (Scholl, Drieser et al., 2005, p.13).” Through these partnerships, the value of inclusion is strengthened as everyone involved is working towards a common goal.
Our experiences shape us! A leisure companion watches participants with and without disabilities playing tee-ball together work together.
Scott is 8-years-old, has autism, and has been participating in the TWP program for three years. During Scott's first summer using TWP services, he participated at the Leisure Services T- Ball program, a 12-week program that met 2 times per week. Dad was not sure that this was going to be a great idea. He thought that it would be too hard for Scott, but Mom really wanted to give it a try. She really wanted Scott to have the same opportunities as his brother to participate in fun activities. The first week of t-ball was really tough for Scott. He would not let the companion come near him and he cried for most of the time t-ball was going on. His younger brother, Brian, was also on the same team and was doing just great. In the second week things got a little better for Scott. While he was on his mom's lap, Scott would let the companion sit next to him and by the third week, Scott and his companion were throwing the ball back and forth to each other. The fifth and sixth weeks turned out to be even better — he would go out on the field and play for part of the time with his teammates. By the end of the season, Scott was on the field with the other kids playing the game. His companion assisted him in running the bases and knowing where to stand when batting. The subsequent summer, Scott was signed up for the same program. He was really timid at first and on the first night there were a few tears and a lot of sitting down on the field but each night got better and better for Scott. By the middle of this summer, the companion was only there to help Scott know where to stand when hitting and to assist him in knowing which bases to run to. At the end of the summer, the companion was not needed except for encouragement and Scott was able to participate fully with his peers. In Scott's third summer using TWP services, Scott's parents signed him up for Coach Pitch Softball. The first day was AWESOME. He met his companion and introduced him to his mom as his new friend. The companion assisted Scott in getting to know his teammates and with fielding and hitting. By the third week of this third summer, Scott was doing great and needed his companion less and less. By the middle of the summer no companion was needed. A true success and the ultimate goal of Together We Play. (Scholl, Drieser, et al., 2005).
About this video:Jack’s mom, Lara, gives her impression of the
success and personal growth that her son has experienced while attending the JCC. Video courtesy of
the National Center on Accessibility.
Through system-directed change, effective inclusion services that will benefits not only agency staff and participants, but the greater community can be facilitated. It is important to note, as in the examples above that inclusive services can and will look different at each organization, but this does not determine the effectiveness of services. Effective inclusion services require team work, education, and infrastructure. Establishing a framework, however is only laying a foundation for true inclusion to occur. True inclusion must become a value that is shared by all parties involved, and when it is, inclusion will happen naturally on its own accord. For true inclusion as stated by Schleien above, is not something that can be forced upon individuals or mandated by law. In many ways it can be described as Victor Frankl explain success:
Don't aim at success-the more you aim at it and make it a target, the more you are going to miss it. For success, like happiness, cannot be pursued; it must be ensued...as the unintended side-effect of one's personal dedication to a course greater than oneself. (as cited in FLOW: The Psychology of the Optimal Experience, 1991)
By seeing inclusion as a value, it becomes a “course greater than oneself.” It becomes something intuitively worthwhile that we, as recreation professionals, are sincerely privileged to share with those we serve.
About this Monograph
This monograph was developed by the National Center on Accessibility
for the National Center on Physical Activity and Disability under sponsorship
of the Centers for Disease Control and Prevention.
Special thanks to Beth Gendler for the provision of resources regarding the Inclusion and Accessibility services at the St. Paul JCC.
Special thanks to the staff, participants, and their families at the St. Paul Jewish Community Center for permission to use their facilities for the video and images used in this monograph.
Special thanks to Kathleen Scholl for the provision of photos and resources regarding the Together We Play Program.
Special thanks to Linda Heyne and Amy Davidson for providing background
information regarding the JCC and TWP program development.
About the Author
Catherine Nolan is a graduate student at Indiana University , pursing
her master's degree in Therapeutic Recreation. She currently works
as a graduate assistant at the National Center on Accessibility.
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