1954
Brown v. Board of Education
In “Brown v. Board of Education” the Supreme Court declared that “separate but equal” was unconstitutional, thereby making racial discrimination illegal. This decision influenced future legislation on the education rights of children with disabilities.
1958
Roland Johnson
At age 12, Roland Johnson was sent by his parents Pennhurst State School and Hospital outside Philadelphia, where he spent 13 tormented years enduring neglect, beatings, and sexual assault. Years later, he played a role in shutting down Pennhurst and became a leader in the Self-Advocacy Movement.
1959
Normalization
In 1959, a group of parents in Denmark sought better treatment for their children with developmental disabilities living in institutions. Niels Erik Bank-Mikkelsen, head of the Danish Service for the Mentally Retarded, drafted legislation that called for the right of people with disabilities to the same community-based existence as their peers without disabilities, including clothing, housing, education, work, and leisure. Bank-Mikkelsen is considered the father of the normalization principle.
1960s
Social Security Disability Insurance
The U.S. Congress removes the provision limiting Social Security Disability Insurance benefits to workers over age 50, making SSDI available to younger workers with disabilities.
1960s
Institution staff provide custodial care
Institution staff provide custodial care with staff-to-resident ratios as high as 50 to 1. Unlike today’s direct support professionals who perform a complex array of individualized services in community settings, institution workers provide only the most basic caregiving services.
1961
The President’s Panel on Mental Retardation
President John F. Kennedy assembles the President’s Panel on Mental Retardation. Their goal is to “cure and prevent mental retardation.”
Under President Johnson, this became the President’s Committee on Mental Retardation. It’s now called the President Committee for People with Intellectual Disabilities.
1962
Ed Roberts admitted to University of California, Berkeley
Ed Roberts became the first student with a significant disability to be admitted to the University of California, Berkeley. Within 10 years, Ed and others would launch the Independent Living Movement
We Are The Strongest
“We, who are considered the weakest, the most helpless people in our society, are the strongest, and will not tolerate segregation, will not tolerate a society which sees us as less than whole people.” – Ed Roberts
1963
Eunice Kennedy Shriver article
President John F. Kennedy had a sister, Rosemary, with intellectual disability. Another sister, Eunice Kennedy Shriver, wrote openly about their family in the Saturday Evening Post, a popular magazine, helping to reduce the public stigma of having a family member with a disability.
1963
The Developmental Disabilities Act
Signed by President Kennedy, the goal of the Developmental Disabilities and Bill of Rights Assistance Act (DD Act) of 1963 was to address problems in state-run institutions for people with disabilities and create university programs to advance research and treatment. This goal evolved to address individualized supports and community services for people with IDD. It also led to the development of State Councils on Developmental Disabilities, University Centers of Excellence in Developmental Disabilities (UCEDDs), Protection and Advocacy organizations in every state.
1965
Medicare is signed into law
President Lyndon Johnson signs the Medicare Act into law in 1965. Medicare provides federally funded health insurance for retirees and recipients of SSDI and Medicaid supports Americans who are poor and/or disabled.
1965
Senator Robert Kennedy tours Willowbrook
In 1965, Senator Robert Kennedy toured the Willowbrook State School in New York. Accompanied by a T.V. crew, he compared the conditions of the institution to that of a snake pit.
“… we have a situation that borders on a snake pit, and that the children live in filth, that many of our fellow citizens are suffering tremendously because of lack of attention, lack of imagination, lack of adequate manpower.”
In that same year, Senator Kennedy addressed a joint session of the New York legislature on the “dehumanizing conditions” of the Rome and Willowbrook institutions in New York.
1966
“Christmas in Purgatory”
Burton Blatt, a leader in special education and disability advocacy, and photographer Fred Kaplan publish Christmas in Purgatory, a photographic exposé of the horrible conditions in state institutions. Blatt sent 1,000 copies to legislators, professors, and advocacy groups.
Of the institutions, Blatt said, “There is a hell on earth, and in America there is a special inferno.”
The Architectural Barriers Act
The Architectural Barriers Act mandates that federally constructed buildings and facilities be accessible to people with physical disabilities.
1969
Changing Patterns
The President’s Committee on Mental Retardation publishes “Changing Patterns in Residential Services for the Mentally Retarded,” challenging our understanding of how we provide services to people with disabilities. Wolf Wolfensberger, one of the editors of this publication, later said, “This was the book that broke the back of the institutional services system.”
1969
The normalization principle
Bengt Nirje of the Swedish Association for Retarded Children further expanded on the normalization principle outlined by Niels Erik Bank-Mikkelsen and translated it into English. A few years later, Wolf Wolfensberger would further develop and systematize the principle and use it to guide the development of community-based services.
1970s
Enrollment in large institutions decreases
As enrollment in large institutions decreased services were gradually provided in the community. Some facilities held dozens of people, others just a few.
1970s
The social model of disability
Disability under the social model is defined as the interaction between people and society. It is a result of society’s failure to accommodate the needs of individuals with disabilities. In this model, people with disabilities are in control of their own lives and identify with others who have been oppressed.
1970s
The title QMRP is created
The term Qualified Mental Retardation Professional (QMRP) was the term first used in federal standards developed in the late 1970s and early 1980s for qualified workers supporting people with developmental disabilities. Qualifications included a bachelor’s degree plus at least one year of experience working with people with IDD.
1970s
Developmental Disability
Elizabeth Boggs, Ph.D. and Elsie Helsel, Ph.D. coined “developmental disability,” defined as a disability that originated before age 18 and was attributed to mental retardation, cerebral palsy, epilepsy, or another neurological condition.
Bengt Nirje
“The normalization principle means making available to all people with disabilities patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life or society.” – Bengt Nirje
1971
The Center on Human Policy
The Center on Human Policy at Syracuse University is founded by Burton Blatt in response to widespread abuse of and discrimination against people with disabilities in society.
1972
Dignity of risk
Influenced by Bengt Nirje’s work in Sweden, Robert Perske wrote about the evils of overprotection of vulnerable people. “Dignity of risk” means everyone, including those with disabilities, has the right to make decisions and take risks for personal growth and well-being.
James Meadours
“We can’t learn if we don’t make mistakes. We’re human. Everybody makes mistakes.” – James Meadours
1972
The first group homes in New York
The Center on Human Policy opens the first group home for people with developmental disabilities in Onondaga County, NY.
1972
Centers for Independent Living
In 1972, the first Center for Independent Living was established in Berkeley, California, based on the principle that people with disabilities are entitled to the same civil rights, options, and control over life choices as people without disabilities. One of their first accomplishments was implementing a curb cut program, the first in the country. The creation of this center started a national movement by and for people with disabilities.
1972
Willowbrook
Reporter Geraldo Rivera visits Willowbrook State School in 1972 and reports on the deplorable conditions. His exposé “Willowbrook: The Last Great Disgrace” airs on national television. Willowbrook housed 5,200 people in deplorable conditions.
1972
Wolf Wolfensberger systematizes normalization
Wolf Wolfensberger’s “The Principle of Normalization in Human Services” (1972) was a best-selling book that revolutionized community services. It was selected as the most influential work of the second half of the 20th Century in the field of intellectual and developmental disabilities. Wolfensberger trained a generation of leaders in human services and helps create a roadmap for community living.
1973
Section 504 of the Rehabilitation Act of 1973
Section 504 of the Rehabilitation Act of 1973 becomes the first U.S. federal civil rights laws offering protection for people with disabilities. The Act brought the language of the Civil Rights Act of 1964 to the Rehabilitation Act of 1973 and set precedents for subsequent legislation, including the Americans with Disabilities Act in 1990
1974
The first U.S. self-advocacy conference
The Self-Advocacy Movement – people with intellectual and developmental disabilities speaking up for themselves and for other with disabilities – began in Sweden in the late 1960s. In Canada and the U.S., people with the label of “mental retardation” were proclaiming, “We are people first!”
In 1974, the first U.S. People First conference was held in Oregon. [Pictured: Valerie Schaaf, People First of Oregon]
1974
“People First”
Self-advocates and their allies formed hundreds of self-advocacy groups across the United States and in other countries. Many groups used the name “People First.” Other groups included Speaking for Ourselves (Pennsylvania) and Advocating Change Together (Minnesota). [Pictured at top: Debbie Robinson, founding member of Speaking for Ourselves.]
1974
Human Policy Press
Human Policy Press, an independent press, started by the Center on Human Policy in 1974, promotes positive attitudes towards people with disabilities.
1975
The Education for All Handicapped Children Act
The Education for All Handicapped Children Act mandates free and appropriate education for all children with disabilities. It is now called the Individuals with Disabilities Education Act (IDEA).
1977
NYSACRA
The New York State Association of Community and Residential Agencies (NYSACRA) forms in the 1970s to represent not-for-profit agencies providing service to people with intellectual developmental disabilities.
1977
Section 504 Sit-Ins
Sparked by the government’s failure to implement Section 504 of the Rehabilitation Act of 1973, a group of disability activists staged a sit-in protest in San Francisco to demand greater accessibility and accommodations for people with disabilities.
1977
Black Panther and disability activist Brad Lomax
A member of the Black Panthers, disability activist Brad Lomax helped lead the Section 504 sit-in in San Francisco.
Photo by HolLynn D’Lil
1978
The New York State Office for People With Developmental Disabilities
Originally called the Office of Mental Retardation and Developmental Disabilities, OPWDD today is responsible for coordinating services for New Yorkers with developmental disabilities and other neurological impairments. They provide services directly and through a network of approximately 600 nonprofit service providing agencies, with about 80 percent of services provided by the private nonprofits and 20 percent provided by state-run services.
1979
Person-centered planning
Person-centered planning, a process for selecting and organizing the services and supports a person with a disability may need to live in the community – and directed by the person receiving support – is developed, inspired by the principle of normalization.
1979
The Community Imperative
The Center on Human Policy issues “The Community Imperative” to establish that all human beings, regardless of the nature and severity of disability, are inherently valuable and have rights.
1979
The National Alliance for the Mental Illness
The National Alliance for the Mental Illness (NAMI) is founded to build better lives for the millions of Americans affected by mental illness.
1983
ADAPT organizes disability rights activists
Formed in 1983, ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.
1986
The Self-Advocacy Association of New York State
The Self-Advocacy Association of New York State (SANYS) is founded in 1986 by Bernard Carabello, a former resident of the Willowbrook State School, and other self-advocates. SANYS is now a grassroots network that includes more than 150 self-advocacy groups. There are SANYS offices in all five regions of New York State.
1986
Perry Whittico
“Self-advocates effect change through helping others.” – Perry Whittico, founding member of the Self-Advocacy Association of New York State
1988
Disability and minority representation
Dr. Sylvia Walker was a lifelong champion for minority persons with disabilities. Born in New York City in 1937, she earned four degrees and, in 1988, became director of the Center for Disability and Socioeconomic Policy Studies at Howard University in Washington, DC. She was also a co-founder of the American Association for People with Disabilities in 1995.
1990s
Self-Advocates Becoming Empowered
In 1990, self-advocates from across the country discussed the possibility of forming a national organization. In 1992, self-advocates voted for board members and Self-Advocates Becoming Empowered was formed.
Caption: Nancy Ward, founding member of SABE
1990s
The Capitol Crawl
Over 1,000 people march from the White House to the U.S. Capitol to demand that Congress pass the Americans with Disabilities Act. The “Capitol Crawl” was a physical demonstration of how inaccessible architecture affects people with disabilities.
Photo credit: Tom Olin
1990s
The Americans with Disabilities Act
The Americans with Disabilities Act (Public Law 101-596) is passed. It prohibits discrimination on the basis of disability in employment, public services, and public accommodations.
1990s
Direct support professionals
The title direct support professionals coined to more accurately describe the work of trained professionals who support individuals with intellectual and developmental disabilities.
1990s
DSPs are interdisciplinary professionals
The adoption of the term “direct support professional” signifies a shift towards recognizing the expertise, skills, and professionalism required to provide effective and person-centered support. In the past, terms like “caregiver,” “residential counselor,” or “support staff” were commonly used, but these terms did not fully capture the professional nature of the work or the importance of the direct relationship between the support worker and the individual receiving services.
Graphic developed by Amy Hewitt
1994
Remembering with dignity
Self-advocates, advocates and community members honor those who lived and died in state institutions, often buried with only a number.
1995
International Symposium on Issues of Women with Disabilities
The First International Symposium on Issues of Women with Disabilities is held in Beijing, China in conjunction with the Fourth World Conference on Women.
1996
Community Support Skills Standards
The Community Support Skills Standards are a nationally validated set of competencies, representing the knowledge and skills needed to do the work of direct support.
1996
The National Alliance for Direct Support Professionals
NADSP was created by a small group of dedicated professionals, including John F. Kennedy, Jr., to advance the interests of the DSP workforce.
1996
Frontline Initiative
Frontline Initiative, a bi-annual newsletter for direct support professionals, is published by the University of Minnesota’s Institute on Community Integration in partnership with The National Alliance for Direct Support Professionals.
1999
Photo: Plaintiffs Lois Curtis (L) and Elaine Wilson ® with reporter Nina Totenberg.
Olmstead v. L.C.
In Olmstead v. L.C., the Supreme Court finds the unjustified segregation of people with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act.