People with intellectual or developmental disabilities (IDD) in the United States live in many different types of settings, including homes of their own, with a family member, with a host or foster family, or in a provider-owned or -operated setting. Over the last 30 years, people with IDD have shifted from living in large facilities to smaller homes in the community. As of 2016, an estimated 17% of people with IDD in the United States were receiving Medicaid- or State-funded long-term supports and services (LTSS) through state IDD agencies.
Over the past several decades, rapid deinstitutionalization and community integration of people with ID/DD have resulted in remarkable systems transformation. In the 1950s families, parent associations, professionals, and policymakers protested that large state-operated IDD institutions were overcrowded, understaffed, and sometimes unfit for human habitation. Professionals including Wolf Wolfensberger and Bengt Nirje argued that segregating and institutionalizing people based on disability enhanced negative stereotypes and was dehumanizing. Instead, they should be supported to live, play, work, and learn in culturally normative, physically and socially inclusive settings, regardless of the type or severity of a person's disability. Legislative action during the 1960s and 1970s propelled a movement to deinstitutionalize services for people with IDD and to provide more inclusive services and supports in community settings.
The transition from institutional to community living, however, has not been without its struggles. Concerns over long waiting lists for services, significant stress on family caregivers, lack of specialized caregiver training and high rates of staff turnover in community settings have led some to call for the creation of new segregated facilities that can provide more targeted support.
These concerns are both real and significant. However, the solution is not to return to the building of large, segregated, isolated institutions and to call them farmsteads, campuses, or some other label. Over the past half-century, we have learned that congregating people with IDD in large institutions does not promote positive outcomes and limits community interaction and involvement for some of our most vulnerable citizens. Solutions should come from the experience of people with IDD and from five decades of research, practices, and policies. These evidence-based sources will inform what policies should be implemented to efficiently and effectively use our limited resources to address these challenges and ensure the best possible quality of life for all.