40 Big Ideas
3. Community Integration and Inclusion
Membership and belonging
In the past, it was thought that people with disabilities should live in institutions. Now people can live and work in homes and businesses and go anywhere in the community. This is often called community integration. When people with disabilities truly belong, have community friends, and contribute to their communities, it is called community inclusion. We are still working on making communities inclusive for people with IDD.
Where do people with intellectual and other developmental disabilities (IDD) belong?
The answer has evolved over centuries. Since the view shifted from institutions as the answer to community places in the 1970s and 1980s, the concept of what constitutes community integration and community inclusion has dramatically evolved. In the last 40 years, the concepts have shifted in at least three ways:
1. Size
In the first phase of deinstitutionalization, residential facilities with 30 to 45 individuals were considered community homes. Large day programs with hundreds of people were labelled community places.
As funding for intermediate care facilities, which started in the 1970s, began to be used for Medicaid-waiver programs in the 1980s, homes slowly shrank to 12, six, and four beds.
2. Control
Part of the evolution of what constitutes community integration also began to be shaped by seeing that many programs in the community were still operating on institutional values. Decisions and control were primarily based on agency and service system values.
The person-centered planning ideas of honoring individuals’ wishes and dreams began to change that and emphasized individuals' greater role in community life by fully participating and contributing.
3. Belonging.
While individuals living in smaller homes visited more places in their communities, such as stores, restaurants, and movies, observers began to notice that these individuals were in the community but not of the community. Community inclusion emerged as distinct from integration, reflecting the difference between physical and social inclusion, between presence and participation. Members of the larger communitycould move from simple acceptance of individuals with IDD in their workplaces, stores, houses of worship, and neighborhoods, to getting to know, participating with, and befriending these individuals.
The U.S. Supreme Court's Olmstead decision, the Americans with Disabilities Act, normalization, social role valorization, advocacy by parents and individuals with IDD, and many other factors all brought about greater inclusion and changed how individuals with disabilities were seen in the eyes of the community. Today, individuals with IDD have vastly wider life experiences, including in their social relationships, employment, and sense of belonging. Today, community members have far more opportunities to appreciate the gifts and contributions of individuals with IDD, and to develop authentic, deep, and loving relationships with them.
Integration v. Inclusion
Sometimes integration and inclusion are meant to refer to the same phenomenon and are used interchangeably. Sometimes, integration refers to individuals having opportunities to be present in community places, such as living in their own apartment, shopping, or attending a house of worship with others. In contrast, inclusion means going beyond physical presence to full participation, membership, social relationships with ordinary community members, and belonging.
In the vision of a truly and fully inclusive community, people with and without disability labels participate with one another in all aspects of life - in neighborhoods, workplaces, houses of worship, recreation opportunities, community organizations – and have meaningful, authentic relationships and friendships with one another. It means there are no separate opportunities. For example, it would mean the end of special classes in a church, special clubs, or separate day programs or workshops. It would not mean that people who need individualized training or assistance don’t receive it; it only means they receive it in places available to and including everyone. In a fully inclusive community, people with disabilities contribute everywhere. Community members see, receive, and value the contributions of all other citizens. In other words, while a great deal of progress has been made, there is still a long way to go.