Frye | 10-19
Community inclusion, interacting and being accepted by others is a fundamental right and basic need for establishing self-determination and respect and dignity for everyone.1 Unfortunately, there is extensive evidence of the social exclusion of people with intellectual disabilities.2 Striving to create an inclusive community that provides opportunities for integration is urgently needed for individuals with intellectual developmental disabilities and mental health concerns. This can be accomplished by maximizing the resources in your community and minimizing a reliance on paid services. This article attempts to give a perspective of the challenges and success of one organization located in rural western Pennsylvania that successfully integrated individuals with dual diagnosis (IDD/MI) into their communities. Starting with input from individuals, recognizing system gaps, working through barriers with the goal of inclusion and the experience of an “everyday life.”___
Genesis of our Community Participation Initiative
During the summer of 2019, Fayette Resources Inc. hosted trainers from the Pennsylvania Office of Developmental Programs (PA ODP) and Self Advocates United as 1 (SAU1) to train employees on “Charting the LifeCourse” methods and tools. The core belief of the “Charting the LifeCourse” framework is that, “all people have the right to live, love, work, play, and pursue their life aspirations.”3 This belief and the framework’s various tools and processes place the individual at the forefront of every conversation and stage of community engagement planning.
The Pennsylvania Office of Developmental Programs’
“Getting Connected to the Community” training also served as a resource to
Fayette Resources during the development and application of community
inclusion.4 This training brought the individual and their
interdisciplinary team together for brainstorming, community planning, and
relationship mapping. The model explains how being present at an activity can
lead to participation in the activity, which can lead to an opportunity to
connect with others involved, which can then lead to an opportunity to
contribute to the group.4 Keeping this in mind with each new
connection allows opportunity for the development of more community inclusion.4
the principles provided in the “Charting the LifeCourse” training and “Getting
Connected to the Community” provided Fayette Resources with a foundation of
resources to utilize for the implementation of Community Participation Supports
(CPS) services.3,4 CPS services, “provide opportunities and
support for community inclusion, building interest in and developing skills and
potential for competitive integrated employment.”5 CPS
services should “result in active, valued participation in a broad range of integrated activities that build on the
individual’s interests, preferences, gifts, and strengths while reflecting his
or her desired outcomes related to employment, community involvement and
Identification of Barriers
Barriers in rural communities are similar to those experienced in large metropolitan areas; the identification of person–centered interests and identifying locations that are supportive in the community participation process so that individuals could pursue their desires, dreams, and interests.
Sometimes people are not able to identify what their interests are and who they want to engage with. This could be due to lack of life experiences or prior negative experiences in the community setting. At Fayette Resources, interdisciplinary teams who provide support services have scheduled exploratory activities or tours of their community. Exploratory activities are community activities that an individual has never experienced. By observing the individual in the new community environment engaging in a new experience, identification of a new person-centered interest may surface. Charting the LifeCourse published an “Experiences and Questions Booklet” which can be used to start and lead the conversation as to how an individual may prefer to engage in their community across their life span and through different life domains.6 The booklet enables the user to reference where they are in life (school age, transition age, adulthood, aging) and start the conversation around what life domain (employment, community living, safety, healthy living, social & spirituality, and citizenship and advocacy) they want to explore more in a community inclusive way.6
In rural communities there are a limited number of businesses, fewer recreational or social outlets, and less opportunities visually apparent. One way to move past this barrier is to utilize the relationship map offered in the “Getting Connected to the Community” training to identify what social capital already exists for the individual. In order to initiate growth in social capital for someone that may have minimal or no social capital, an interdisciplinary team could look at community connections that are already established by employees, families, or friends. These are gatekeepers.7 The Pennsylvania Department of Human Services’ “Community Participation Supports for Direct Support Professionals” training defines a gatekeeper as a “person who is already a trusted and valued member of an existing group.”7 While the individual themselves may not have an avenue into the community for a desired interest, they could use a gatekeeper as a resource to gain access to the community inclusive activity.
Once an area of interest has been identified, “The Integrated Supports Star Worksheet” offered through the “Charting the Lifecourse” framework is an excellent resource tool to use to determine a pathway for community inclusion.3 The worksheet serves as a visual brainstorming and planning tool. Fayette Resources used this tool by placing the community inclusive activity or opportunity that individual wishes to purse at the center or the “star.” The star leads the individual’s interdisciplinary team through the planning process by helping them identify the individual’s current strengths and needs, appropriate internal or external supports that are needed, community location options, and technology that is present for the identified activity.
Participation and Relationship Building
The primary goal of community inclusion is to develop meaningful relationships with others in the community that are built on common interests and are mutually supportive. Guidance and support should be provided in the establishment and sustainment of the meaningful relationship; keeping in mind that meaningful relationships are not formed overnight, but over time. As the relationship continues to grow the interdisciplinary team should modify supports allowing the individual to purse independence and personal growth.
Fayette Resources began informally implementing community inclusive services two years ago. Since then the organization has incorporated the aforementioned trainings to help maximize “evidenced based strategies” in planning community inclusive activities that are person-centered.
We have witnessed individuals who receive CPS services build meaningful reciprocal relationships through community inclusion. Currently, individuals that receive services through Fayette Resources in rural communities are leading their “everyday lives” through volunteerism with 18 different groups, pursing health and wellness activities with small community groups, exploring hobbies and interests and being active members of their community.
Case Example: Maximizing Resources to Ensure Successful Community Inclusion
is a 41-year old individual with an intellectual disability and a mental
illness (IDD/MI). Along with his dual diagnosis comes a history of trauma. He
experiences rapid changes in aggression, agitation, anxiety, depression, and
significant challenges with regulating his mood when angry. Daniel's
symptomology, related to his diagnosis
, and his history of trauma have
impeded his access to community inclusion opportunities.
Daniel resided with his biological parents until the age of seven when he was removed from their care following reports of physical and sexual abuse committed by his father. Daniel resided in foster care until adulthood. He had three failed family living placements and now resides in a group home with Fayette Resources Inc. He attends Fayette Resources Inc.’s Community Participation Supports Program, where he has started working on community inclusion outcomes.
Conversations and exploratory community activities with Daniel revealed an interest in volunteerism. The team supported Daniel’s mental health needs during the community exploration process. They focused on finding the appropriate community volunteer location that would foster a positive self-image while offering Daniel opportunities to pursue meaningful relationships. A safe, trusting and supportive community environment was paramount in choosing a volunteer opportunity for Daniel.
Daniel and his interdisciplinary team reviewed his relationship map to identify Daniel's current social capital. During this review, they found that Daniel lacked social capital and natural supports. They determined the optimum pursuit of community inclusion would be through the use of a gatekeeper.
The gatekeeper member of Daniel’s team communicated information about a volunteer opportunity at a local non-profit “pay what you can” cafe. The café only served meals on Fridays and Saturdays. The gatekeeper was a childhood friend of a board member of the cafe. The gatekeeper possessed valuable knowledge about the cafe that would help the team determine if this would be a good opportunity for Daniel.
Being mindful of Daniel’s mental health concerns, Daniel and his team decided to explore this opportunity. Daniel began volunteering on Wednesdays, this was preparation day for the café, which means only volunteers would be present. This smaller volunteer group was accommodating, providing support for Daniel during periods of increased anxiety and agitation, allowing a slow transition into the community in a safe and supportive environment. Daniel shared similar positive personality traits with fellow volunteers, most notably a good sense of humor, which made the transition positive.
Daniel had opportunities to choose tasks to complete, resulting in discovering and learning new talents and improving his self-image. Daniel seemed to be very fond of a husband and wife pair who volunteered at the café. They seemed to take an interest in Daniel as well, especially the husband, Joe. An opportunity to forge a meaningful friendship was revealed.
As Daniel’s connection with Joe grew, Daniel’s emotions stabilized. He exhibited fewer outbursts in the community, a decrease in anxiety and agitation, and he was able to be himself around his new friends. Since Daniel has developed excellent coping skills his emotions have stabilized, Daniel has been able to laugh and share his sense of humor among his new friends at the café.
Daniel’s friendship with Joe is very important to him. Staff continue to support Daniel in building and maintaining this friendship with Joe. Staff have accompanied Daniel into the community to meet Joe to get ice-cream and to celebrate their birthdays together. Daniel's goal is to interact one-on-one with Joe in the community, without staff support. Daniel's support team is currently working with him to pursue this goal. The “Charting the LifeCourse Experiences and Questions Booklet” is indispensable in helping Daniel plan for one-on-one time in the community, maintaining the focus on his safety and promoting his independence.
Daniel has realized new skill sets through his volunteer experience, established meaningful relationships, and is contributing to his community. Recently, Daniel was asked to be one of the representatives of the café for a radio broadcast interview. With his new natural supports, his friends at the café, Daniel was able to successfully contribute to the interview. Having natural supports and people who understand and care about him, aided in reducing his anxiety in that new environment.
Rachel Frye is the Director of Community Participation Supports (CPS) Services at Fayette Resources Inc. in southwestern Pennsylvania. Frye has been in this position for just over a year and has been working for Fayette Resources Inc. for more than nine years. Prior positions included Day Program Site Director, Program Specialist, and Direct Support Professional. Frye received her bachelor’s degree in Special Education and Elementary Education at California University of Pennsylvania in December of 2002.
Rachel Frye, Fayette Resources Inc.
1 Millennium Drive, Suite 2 Uniontown, PA 15401