¶ Institutionalization and Deinstitutionalization
All disabled people have the right to live independently and be included in the community, with choices equal to others (CRPD Article 19). For over a century, millions of disabled people were confined in institutions against their will. The fight to close these institutions and create real community alternatives is one of the defining struggles of disability history—and it continues today. This page centers disabled people's expertise and is informed by disabled-led organizing globally.
Institutionalization is not history. Globally, hundreds of thousands of disabled people remain confined in nursing homes, psychiatric facilities, large group homes, and other congregate settings. Many countries are building new institutions even as others close old ones. Understanding how institutions grew, how they were challenged, and what true deinstitutionalization requires is essential for ongoing advocacy.
This page covers:
- How and why institutions expanded (1800s–1970s)
- What life inside institutions was like
- How disabled people, families, and advocates fought back
- Key legal victories and policy changes
- The difference between real deinstitutionalization and "transinstitutionalization"
- Ongoing struggles and what community living actually requires
- Global perspectives on institutional reform
Between the mid-1800s and mid-1900s, institutions expanded dramatically across Europe, North America, Australia, and colonized territories. Factors included:
- Industrialization creating rigid standards of "productive" labor
- Fear of "degeneracy" and eugenic ideology
- Growth of the medical profession claiming authority over disability
- Pressure on families lacking community support
- Government cost-saving through congregate care
- Racial and class anxieties about "undesirable" populations
Disabled people were confined in many settings:
- State hospitals and asylums for people labeled mentally ill
- "Training schools" for people with intellectual disabilities
- Epileptic colonies segregating people with seizure disorders
- Poorhouses and almshouses mixing disability, poverty, and age
- Nursing homes warehousing elderly and disabled people together
- Residential schools separating Deaf, blind, and other disabled children from families
At the peak in the United States (1950s–1960s), over 500,000 people were confined in state psychiatric hospitals alone. Hundreds of thousands more lived in facilities for people with intellectual disabilities, nursing homes, and other settings. Similar patterns existed in the UK, Canada, Australia, across Europe, and in colonized nations.
While conditions varied, institutional life typically featured:
- Overcrowding and understaffing
- Loss of personal possessions and identity
- Forced labor (laundry, farming, cleaning) without pay
- Physical, sexual, and emotional abuse
- Neglect and preventable deaths
- Use of restraints, seclusion, and sedation
- Lack of education, therapy, or skill development
- No privacy, autonomy, or decision-making power
- Permanent confinement with no path to release
Institutionalization was never just about disability. People were confined because of:
- Intellectual or developmental disabilities
- Mental health conditions
- Epilepsy
- Physical disabilities requiring care
- Deafness or blindness (especially as children)
- Poverty and homelessness
- Being labeled "promiscuous" or "unruly" (especially women and girls)
- Race and ethnicity (Black, Indigenous, and immigrant people were disproportionately targeted)
- Family rejection or lack of support
Many people spent decades—or entire lifetimes—inside.
Starting in the 1940s, journalists began documenting institutional conditions:
- 1946: Albert Deutsch's exposés in PM newspaper
- 1965: Senator Robert Kennedy's unannounced visit to Willowbrook (New York)
- 1972: Geraldo Rivera's television exposé of Willowbrook, showing shocking abuse and neglect
These reports helped shift public opinion against large institutions.
Institutional survivors spoke out through:
- Memoirs and autobiographies
- Testimony at hearings and lawsuits
- Advocacy organizations
- Oral history projects
Survivor voices were essential to building the case for closure.
1960s–1970s:
- President Kennedy's 1963 Community Mental Health Act promised community alternatives (though funding fell short)
- Parent advocacy groups challenged conditions
- Legal advocates began filing lawsuits
- Independent Living Movement demanded community-based services
Landmark Legal Cases:
- Wyatt v. Stickney (1971): Established right to treatment and minimum standards in Alabama institutions
- O'Connor v. Donaldson (1975): Supreme Court ruled non-dangerous people cannot be confined against their will
- Halderman v. Pennhurst (1977): Found institutional conditions violated residents' rights
- Olmstead v. L.C. (1999): Supreme Court ruled unjustified institutionalization is discrimination under the ADA
Policy Changes:
- Medicaid Home and Community-Based Services (HCBS) waivers (1981) allowed funding for community care
- Americans with Disabilities Act (1990) prohibited discrimination and supported community integration
- Money Follows the Person programs helped people transition out of institutions
Deinstitutionalization was uneven and often incomplete:
- Many large state hospitals closed between 1960 and 2000
- Population in state psychiatric hospitals dropped from over 500,000 (1955) to under 50,000 (2000)
- BUT: Many people were moved to nursing homes, group homes, or jails rather than true community living
- Community services remained underfunded
- Homelessness increased as people were discharged without support
- Families were left without help
- New forms of confinement emerged
Rather than true community integration, many people moved from one form of confinement to another:
- Nursing homes: Became the largest institutional setting for disabled people
- Large group homes: Congregate settings with institutional characteristics
- Jails and prisons: Mass incarceration disproportionately affects people with mental health conditions and intellectual disabilities
- Psychiatric hospitals: Remain in use, though smaller
- For-profit facilities: New private institutions replaced some state-run ones
In the United States, over 1.2 million people live in nursing homes. Many are:
- Under 65 with physical or intellectual disabilities
- Placed there due to lack of community services, not medical necessity
- Subject to the same loss of autonomy as old-style institutions
- Disproportionately people of color and low-income
ADAPT and other groups have fought for decades to free people from nursing homes.
Jails and prisons have become de facto mental health facilities:
- Estimated 2 million people with serious mental health conditions are incarcerated annually in the US
- People with intellectual disabilities are overrepresented in the criminal legal system
- Solitary confinement causes severe psychological harm
- Many people cycle between hospitals, streets, and jails
This is not deinstitutionalization—it is a different form of confinement.
¶ CRPD Standards
The UN Convention on the Rights of Persons with Disabilities (Article 19) requires:
- Right to choose where and with whom to live
- Access to community support services, including personal assistance
- Community services and facilities available to all on an equal basis
- No requirement to live in a particular arrangement
The CRPD Committee has called for complete elimination of institutions.
- Personal assistance services controlled by the disabled person
- Accessible, affordable housing integrated into communities
- Peer support from other disabled people
- Income support sufficient to live independently
- Healthcare available in community settings
- Transportation that is accessible and reliable
- Education and employment with accommodations
- Legal capacity and decision-making support (not guardianship)
- Choice and control over daily life
- Large group homes (more than 4 people)
- Facilities where residents don't choose housemates
- Settings that restrict movement, visitors, or daily choices
- Places where staff control schedules and activities
- Any setting where people are placed rather than choosing to live
The UK closed most large "mental handicap hospitals" between 1980 and 2010. However:
- Scandals at facilities like Winterbourne View (2011) showed abuse continued in smaller settings
- "Assessment and Treatment Units" continue to confine autistic people and people with intellectual disabilities
- Advocacy continues for true community support
European Union has pushed for deinstitutionalization, but progress is uneven:
- Scandinavian countries largely closed institutions by 1990s
- Central and Eastern European countries still have large institutions
- EU structural funds have sometimes built new institutions
- Disability organizations are fighting for community investment
Many countries face different challenges:
- Some never built large institutions (community and family care remained primary)
- Colonial institutions were imposed and sometimes remain
- International development programs have sometimes promoted institutional models
- Disability movements are fighting for community-based support that fits local contexts
- Economic constraints limit service development
Australia closed most large institutions but:
- Group homes remain common
- NDIS (National Disability Insurance Scheme) has faced criticism for not supporting true choice
- Indigenous disabled people face particular barriers
- Advocacy continues for self-directed support
Disabled people continue organizing for:
- Closing remaining institutions
- Ending nursing home placement of young disabled people
- Shifting Medicaid funding from institutions to community services
- Increasing personal assistance wages and availability
- Housing accessibility and affordability
- Ending subminimum wage and sheltered workshops
- Decarceration and alternatives to jails for disabled people
- Global implementation of CRPD Article 19
- ADAPT: Direct action for community living since 1983
- National Council on Independent Living (NCIL): US CIL network
- Autistic Self Advocacy Network (ASAN): Fighting institutionalization of autistic people
- Not Dead Yet: Opposing euthanasia and medical discrimination
- Disability Rights International: Documenting global institutional abuse
- European Network on Independent Living (ENIL): Promoting IL across Europe
- Inclusion International: Global federation for people with intellectual disabilities
¶ Sources and Further Reading
- David Rothman, The Discovery of the Asylum
- James Trent, Inventing the Feeble Mind
- Steven Taylor, Acts of Conscience: World War II, Mental Institutions, and Religious Objectors
- Liat Ben-Moshe, Decarcerating Disability
- Michael Kennedy, "The Death of Institutions"
- Samuel Bagenstos, "The Past and Future of Deinstitutionalization Litigation"
- Roland Johnson, Lost in a Desert World
- Institutional survivor oral history projects (various archives)
¶ Legal and Policy
- Olmstead v. L.C. decision and analysis
- CRPD Article 19 and General Comment No. 5
- Medicaid HCBS waiver information
This page centers disabled people's expertise and is informed by disabled-led organizing globally. For questions or to suggest additions, see How to Contribute.