Posted on February 21, 2024

By Rebecca Kasey, CQL Director of Personal Outcome Measures® 

Human services agencies have worked tirelessly to find opportunities for people they support to participate, be included, and be fully integrated in their communities. Merely participating in community activities does not mean a person is included nor integrated. Each aspect of becoming a part of the community looks different. In this Capstone, CQL is reviewing the definitions of these distinct areas, featuring an accredited organization’s view on how to move from participation to full integration, providing helpful tips for organizations to do the same, and sharing data from CQL’s Personal Outcome Measures® (POM) to discuss the impact of community participation on people’s overall quality of life. 

Thank you to Michael Planz, CEO from CQL’s partner organization Community Living Inc. in Frederick, Maryland for contributing to this article. 

What does community participation, inclusion, and integration mean?

Terms like community participation, community inclusion, and community integration have become interchangeable across human services agencies, but they are different. Even the word community has become a term that is oftentimes used to mean anywhere outside of a person’s home. Phrases like “We’re going on a community outing” or “Let’s go in the community” are used by human service professionals to describe typical locations like going out to eat, going to the grocery store, or going to a local park. Using the term community does not mean that someone has truly participated in community activities, nor does it result in people being included or integrated within their communities. Community is more than just a place, it is based on connections, relationships, contributions, and a sense of belonging. A person can only build this belonging by first participating in the communities of their choosing, being included in those communities, and then moving to full community integration. 

Community Participation

Community participation is the first step toward full community integration. As a joint statement from AAIDD and AUCD explains, “Community living and participation means being able to live where and with whom you choose; work and earn a living wage; participate in meaningful community activities based on personal interests; have relationships with friends, family and significant others; be physically and emotionally healthy; be able to worship where and with whom you choose (if desired); have opportunities to learn, grow and make informed choices; and carry out responsibilities of citizenship such as paying taxes and voting.”

Community Inclusion

To fully integrate into communities, people must first be included. As the Utah Department of Health: Medicaid explains, “Community inclusion means actively working to bring individuals who have historically been excluded to “come in” to the community. Community inclusion is the opportunity for individuals with disabilities to live in and have full access to their community to the same extent as those individuals without disabilities; while being valued and treated with dignity and respect. It is belonging to a community built on true connection to others”.

Community Integration

The goal of community participation and inclusion is for people to be fully integrate into their communities. The Utah Department of Health: Medicaid describes, “Community integration is the opportunity for individuals with disabilities to live in the community and be valued for their uniqueness and abilities to the same extent as others without disabilities. Community integration means actively working to not only bring individuals into the community, but also ensuring that they are able to contribute to the development of the community and feel like they are an integral part of it.”

Practical Tips

Start with Discovering Interests

There are hundreds of tools that human service agencies use to discover the interests of the people that receive their services. Agencies may use a discovery process, create interest inventories, use the Charting the LifeCourse Framework, use questionnaires, use assessment tools, or may use CQL’s Personal Outcome Measures® tool. Interests evolve over time for everyone, and it is crucial that agencies have a process for continual discovery of these ever-evolving interests. A good discovery tool will:

• Identify what currently interests the person
• Identify what the person currently participates in within their community
• Discover other interests the person may have, but is not currently participating in
• Focus on what role the person would like to have in community activities, such as whether they would like to lead or make connections
• Discover the unique talents and skills the person has and how these can benefit different community activities

Support People to Participate in the Communities of their Choosing

As Michael Planz, CEO for Community Living, Inc. explains, “Community participation is going out to do something.” When people are choosing what they do in their communities, they are truly participating in activities that others in the community can access. Choice is active, it is not a one-time option or an annual option, it is something every person does each day. Agencies should implement strategies to empower people receiving their services and staff to participate in the communities of their choosing. Supporting people to participate can look like:

• Assisting people to find transportation to go to the activities that interest them
• Offering choices to the person daily, about existing and new places that may interest them
• Training staff in community participation, inclusion, and integration
• Helping people to create and maintain connections with others in their community

Discover Inclusive Communities and Build Social Capital

Human service agencies that support people with disabilities influence communities to ensure that people they support are participating, integrating, and included. As Michael Planz describes “Community Inclusion is being invited out to do something, not disability specific, by people who know and care about you.”

Agencies have an important role in ensuring that their communities have inclusive activities by advocating for inclusion across all community events. In advocating and building community awareness, agencies can also work with people individually to build social capital. In the Capstone article ‘Increasing the Social Capital of People with Disabilities,’ Carli Friedman, CQL’s Director of Research, shares that “Social capital is a concept that recognizes that people’s relationships and social networks are an important aspect of a person’s health and quality of life.” 

Support People to Contribute to the Communities of Their Choosing

Participating in communities and finding inclusive communities can be difficult for human services agencies and people with disabilities. Once these communities have been found, agencies must support people to contribute to the communities of their choosing. Community is about belonging and contributing, not just participating in activities within a community. People must develop social roles within their community to feel that belonging. For more information about developing and supporting social roles, please see CQL’s ‘Practical Tips to Support Social Roles’ Capstone article. Some examples of supporting people to contribute are to:

• Identify the areas that are important to the person, whether they are community events, religious events, or belonging to civic groups
• Discover the social roles that are important to the person and new social roles that may be valuable to the person
• Focus on expanding the person’s role over time so they can demonstrate leadership in the areas that are most important to them
• Identify ways the person can make contributions to their communities, with their time, skills, and expertise

Ensure Community Integration is Individualized

As organizations work to support individualized participation and inclusion in the communities of the person’s choosing, they must also ensure that integration is individualized for the person receiving services. People with disabilities should have a strong sense of belonging where their unique skills and talents are appreciated in the areas of their life that matter to them. Community Living, Inc. in Maryland explains that “Community integration is going out to do something in a way that is not disability specific.” Regardless of if a person has a disability, integration means that the person contributes to the development of their community. The goal is that human service agencies are not the epicenter of this development but are actively supporting a person to integrate fully into their chosen roles. Community integration is about ensuring someone is an integral member of their community, which means that supports are in the background. 

Community Participation and Quality of Life

CQL utilizes Personal Outcome Measures® data to show how participating, interacting, and creating social roles in communities positively affects a person’s overall quality of life. The more that people participate, interact, and have social roles, the more quality of life indicators they have. 

As the chart below shows, people have over six additional quality of life outcomes if they participate in their communities. 

The following chart indicates that every quality of life outcome in CQL’s Personal Outcome Measures® tool is affected by the person participating in the life of their community. As the chart below shows, people who participate in the life of their community are 1.8 times more likely to be safe, 4.1 times more likely to be respected, 11.4 times more likely to interact with members of the community, 6 times more likely to have friends, 6.8 times more likely to have social roles, and so on. 

Final Thoughts on Building Community

Human service agencies are always looking for ways to increase community participation among the people that receive their services. These agencies should consider if their discovery tools are providing valuable and actionable information. They should also consider which communities the person would like to be a part of and encourage participation within these communities. Agencies may also advocate for more inclusive communities while also working to encourage the development of social capital for the person receiving their services. Contributions to the community should be based on the unique talents and skills of the person receiving their services. The ultimate goal is that the person is fully integrated into communities of their choosing. 

Additional Resources

• Capstone Article – Increasing the Social Capital of People with Disabilities
• Capstone Article – Practical Tips To Support Social Roles
• Capstone Article – Putting Barriers To Transportation In The Rear-View Mirror
• Fact Sheet – Community Inclusion
• HCBS Guide – Your Right To A Community Life
• HCBS Guide – Supporting The Right To A Community Life
• Research Article – Promoting the Community Integration of People with Dual Diagnosis
• Research Article – Natural Supports Improve Every Area of Quality of Life
• Research Article – Community Participation Reduces ER Visits for People with Behavior Support Needs
• Research Article – Supporting People with IDD to Transition to the Community

References

• AAIDD, B. of D., & AUCD, B. of D. (2016, June 23). Community Living and Participation for People with Intellectual and Developmental Disabilities. AAIDD_CMS. https://www.aaidd.org/news-policy/policy/position-statements/community-living-and-participation
• Utah Department of Health: Medicaid. (2021). HCBS Settings Rule: Community Inclusion & Integration. Salt Lake City, Utah; Utah Department of Health: Medicaid. Retrieved February 12, 2024, from https://medicaid.utah.gov/Documents/pdfs/ltc/hcbstransition/Files/Community%20Inclusion%20and%20Integration%20Flyer.pdf.