40 Big Ideas

Summary

About 50 years ago, many people with intellectual and other developmental disabilities (IDD) lived in large places called institutions. In 1977, more than 200,000 people lived in institutions. They couldn’t control what they did, what they ate, or who provided their care. They were often treated badly and kept from having children. Then, Wolf Wolfensberger said that people with disabilities should live in the community with their families and make friends. The media started showing how bad the institutions were. Laws were passed that gave people with disabilities the right to control their own lives and get an education. They started leaving the institutions. Courts shut down some places. More laws and court cases since then have made it clear that people with disabilities have the right to live in communities they choose. By 2021, fewer than 34,000 people were living in institutions.

Until the last half of the 20th Century, the notion of segregating people with intellectual and other developmental disabilities (IDD) in remote institutions was generally accepted, albeit with different rationales over time. In the early part of the 19th Century, institutions were seen as training centers where people could learn skills and return to their communities. That aspiration changed when concern grew that those leaving the institutions could be exploited or abused. Thus, institutions became asylums, places where people with disabilities could live in the countryside, isolated from those who might harm them.

By the early 20th Century, the rationale changed again as the eugenics movement cast people with disabilities as sources of contagion, who, if they were allowed to “breed,” would spread criminal traits and create an expanding population of the feeble-minded. This construct justified the isolation of people with IDD in institutions, not to protect them but to protect the general population from them. The movement justified the sterilization of people with IDD in public institutions. The U.S. Supreme Court immortalized the eugenics imperative in the 1927 Buck v. Bell case, which tested the Virginia involuntary sterilization statute. In his opinion, upholding the law and the sterilization of Carrie Buck, Justice Oliver Wendell Holmes infamously stated, “Three generations of imbeciles are enough.”

Institutions became derelict backwaters plagued by overcrowding, inadequate staffing, abuse, and appalling neglect. By 1967, the number of people living in institutions for people with IDD had ballooned to almost 195,000. A decade later, it stood at more than 207,000, according to the Institute on Community Integration. By then, however, deinstitutionalization had begun.

In 1970, Wolf Wolfensberger provided a powerful rationale for deinstitutionalization when he introduced the concept of normalization. The concept asserted that segregation of people with disabilities enhanced stigma and that people should be supported in normal communities where the rest of us live and work. In 1972, Geraldo Rivera released a documentary on primetime television showcasing the deplorable conditions in the Willowbrook institution in New York. Many more exposés would follow.

Another pillar of the deinstitutionalization movement was the use of class action lawsuits, which forced states to upgrade institutional conditions and, ultimately, in the 1974 case of Halderman v. Pennhurst State School and Hospital, to close an institution because it was incapable of providing adequate habilitation.

The Olmstead v. L.C. decision by the U.S. Supreme Court in 1999 was pivotal as well, requiring services to be provided in the most integrated setting possible and that failing to do so could violate the Americans with Disabilities Act.

The decline of institutions was further hastened by federal legislation. The Developmental Disabilities Assistance and Bill of Rights Act of 1963 asserted the rights of people with disabilities to have agency in their lives. The Education for All Handicapped Children Act of 1975, which later became the Individuals with Disabilities Education Act, asserted their right to be included in public education. The Medicare and Medicaid Act in 1965 and the creation of the Supplemental Security Income (SSI) program provided access to the resources and health care necessary to live in their home communities.

The number of people living in IDD facilities of 16 or more people decreased from 207,356 in 1977 to 33,226 in 2021, according to the Institute on Community Integration.

More recently, the Money Follows the Person initiative, the home and community-based (HCBS) services program, the Americans with Disabilities Act, the Olmstead decision, and the 2014 HCBS Settings Rule have all reinforced the notion that people with IDD should live and thrive in communities of their choice, free from the isolation and dehumanization of institutionalization.