Down Syndrome Human and Civil Rights Timeline

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Historically in the United States, the majority of people with Down syndrome and other intellectual and developmental disabilities were kept in inhumane institutions where they were deprived of education, healthcare and even plumbing.

In the United States, until the 1980s and in some cases as late as the 1990s, the way in which people with Down syndrome and other intellectual disabilities were treated represents a shameful chapter of inhumanity and discrimination in our country.

The Global Down Syndrome Foundation is dedicated to improving the lives of people with Down syndrome and to ensuring the atrocities endured by people with Down syndrome in the United States (and that continue in other countries today) are never forgotten and therefore never repeated.

It is important to remember people with Down syndrome and other intellectual and developmental disabilities were a key target in the eugenics movement in the United States – which influenced Hitler’s first mass murders under the Aktion-T4 program in 1939. Through that program, Hitler murdered an estimated 200,000 people with intellectual and developmental disabilities, a large number being people with Down syndrome.

It is important to remember up until 1984 doctors in the United States refused to provide lifesaving procedures to people with Down syndrome such as surgeries related to the heart. Even today, there are people with Down syndrome dying in their 30s or 40s simply because a doctor refused to perform the heart surgery when they were infants.

It is important to remember there were numerous unprosecuted cases wherein doctors and fathers conspired and told mothers of newborns with Down syndrome that their babies had died, when in fact, those babies were quickly and quietly placed in inhumane institutions.

It is important to remember people with Down syndrome and other intellectual disabilities were systematically physically and sexually abused through forced sterilization – by 1981, more than 60,000 people with disabilities had been violated in this manner.

It is important to remember there were doctors as late as the 1980s who categorized feeding a baby with Down syndrome as a “lifesaving procedure” and proceeded to starve babies to death with Down syndrome and other intellectual and developmental disabilities until all 50 state governors created legislation to ban this horrific practice.

It is important to remember children with Down syndrome and other intellectual and developmental disabilities living in institutions were infected en masse in experiments related to vaccine discovery.

It is important for us to remember that our friends and family members with Down syndrome deserve fundamental human and civil rights. Only within this context can we prevent atrocities from surfacing again and prevent discrimination of all forms from happening now.

Below is a human and civil rights timeline for people with Down syndrome, which includes the broader issues related to all intellectual and developmental disabilities.

1773

In the United States, Eastern State Hospital located in Williamsburg, Virginia is recognized as the first state to establish an institution for the mentally ill (then referred to as “lunatics, the insane, feebleminded, madmen, and idiots”). Over the next two centuries, hundreds of thousands of developmentally disabled children and adults are institutionalized, many for life. While institutionalization was not typically forced, parents were often coerced or strongly encouraged to institutionalize their children and told to forget about that family member. Not until the 1950s does “deinstitutionalization” begin, along with the closure of insane asylums and some mental institutions.

The First Insane Asylum. ; To Virginia Belongs the Credit in the Country. (1900, July 16). New York Times.

People with Disabilities Have a Past, Present, and Future! [.pdf document]. (n.d.). Retrieved from Virginia Commonwealth University website: http://www.vcu.edu/partnership/CSAL/downloadables/VA%20Disability%20History%0Timeline%20Document%20Format%20without%20links.pdf

A Hospital Lost to Many – Eastern State Hospital, Williamsburg, Virginia. (2011, June 7). Retrieved from Hospitalstay.com website: http://hospitalstay.com/2011/06/lost-to-many-hospital-%E2%80%93-eastern-state-hospital-williamsburg-virginia-2/

1793

Philippe Pinel

Phillipe Pinel and Jean-Baptiste Pussin are credited as being the first in Europe to remove restraints and introduce more humane methods into the treatment of the mentally ill (which came to be known as moral treatment) at the Asylum de Bicêtre in Paris, France. Pussin influences Pinel and they spread reforms such as categorizing the disorders, as well as observing and talking to patients as methods of cure.

History of Abnormal Psychology. (n.d.). Retrieved from Northern Illinois University website: http://www3.niu.edu/acad/psych/Millis/History/mainsheet.htm

Marshall, R. J. (1995). Pinel: The First Modern Psychoanalyst? Modern Psychoanalysis, 20, 175-182. Abstract retrieved from http://www.pep-web.org/document.php?id=mpsa.020.0175a

There is, however, some dispute about Philippe Pinel’s role.

Weiner, D. B. (2008). Philippe Pinel in the Twenty-First Century. In E. R. Wallace & J. Gach (Eds.), History of Psychiatry and Medical Psychology (pp. 305-312). doi:10.1007/978-0-387-34708-0_8

1883

Sir Francis Galton coins the term “eugenics” in his book Essays in Eugenics. Americans embrace the eugenics movement by passing laws to prevent people with disabilities from moving to the U.S., marrying or having children. Eugenics laws lead to the forced institutionalization and forced sterilization of disabled adults and children.

Galton, F. (1909). Essays in Eugenics. Retrieved from http://galton.org/books/essays-on-eugenics/galton-1909-essays-eugenics1up.pdf

Eugenics: America’s Darkest Days. (n.d.). Retrieved from University of Florida website: http://iml.jou.ufl.edu/projects/spring02/holland/Galton.htm

1907

Indiana adopts eugenics legislation legalizing sterilization practices. Connecticut follows suit in 1909 and a eugenics movement begins in California targeting non-Nordic people through coercive sterilization, marriage restrictions, and forcible segregation of different races and populations.

Black, E. (2003, November 23). The Horrifying Amercian Roots of Nazi Eugenics. History News Network. Retrieved from History News Network website: http://hnn.us/articles/1796.html

1912

"Deborah Kallikak, as she appears To-Day at the Training School." Image via psychclassics.yorku.ca

The Kallikak Family by Henry H. Goddard puts forth the idea that disability is linked to immorality and connects both with genetics. The book is a best-seller and furthers the eugenics movement. Kallikak is a pseudonym used throughout the book — the word itself later became a eupehmisim for the rural poor in the south and northeastern areas of the U.S.

Goddard, H. H. (n.d.). The Kallikak Family: A Study in the Heredity of Feeble-Mindedness. (Original work published 1913) Retrieved from http://psychclassics.yorku.ca/Goddard/

“The Threat of the Feeble Minded” (pamphlet) creates a climate of hysteria allowing for massive human rights abuses of people with disabilities, including forced institutionalization and sterilization.

1917

Via NPR; Courtesy of Marty Pernick

The film The Black Stork is released. Inspired by the sensational case of Dr. Harry Haiselden, it features a Chicago surgeon who convinces the parents of a newborn with multiple disabilities to let the child starve to death instead of performing surgery that would save its life.

Pernick, M. S. (1996). The black stork: Eugenics and the death of “defective” babies in American medicine and motion pictures since 1915. New York: Oxford University Press

The Black Stork: Movie Ads. (n.d.). Retrieved from National Public Radio website: http://www.npr.org/programs/disability/ba_shows.dir/children.dir/highlights/blacksto.html

The Black Stork (1917). (n.d.). Retrieved from IMDB website: http://www.imdb.com/title/tt0160056/

1924

The Commonwealth of Virginia passes a state law that allows for sterilization (without consent) of individuals found to be: “feebleminded, insane, depressed, mentally handicapped, epileptic and other.” Alcoholics, criminals and drug addicts are also sterilized.

Virginia. (n.d.). Retrieved from University of Vermont website: http://www.uvm.edu/~lkaelber/eugenics/VA/VA.html

In Mein Kampf, Hitler cites U.S. eugenics laws and ideology during his attempts to make a medical rationale for his hatred of specific groups of people. He claimed, “I have studied with great interest the laws of several American states concerning prevention of reproduction by people whose progeny would, in all probability, be of no value or be injurious to the racial stock.”

Black, E. (2003, November 23). The Horrifying Amercian Roots of Nazi Eugenics. History News Network. Retrieved from History News Network website: http://hnn.us/articles/1796.html

1927

Supreme Court case Buck v. Bell rules that it is not a violation of the constitutional rights of disabled people to forcibly sterilize them against their will. The Supreme Court has never officially overturned this decision, but in subsequent years, federal and state courts have severely criticized and questioned the legal reasoning underlying the decision.

Pitzer, A. (2009, June 24). U.S. eugenics legacy: Ruling on Buck sterilization still stands. USA Today. Retrieved from http://www.usatoday.com/news/health/2009-06-23-eugenics-carrie-buck_N.htm

Buck v. Bell, 274 U.S. 200 (1927).

Lombardo, P. A. (1985). Three Generations, No Imbeciles: New Light on Buck v. Bell. N.Y.U. Law Review, 30. Abstract retrieved from http://heinonline.org/HOL/LandingPage?collection=journals&handle=hein.journals/nylr60&div=11&id=&page=

1933

The Council for the Retarded Child in Cuyahoga County, Ohio, is created to assist children in the area who had been excluded from public schools. More than 10 other organizations were established in the 1930s and early 1940s. Of these, two large groups – The Seattle based Children’s Benevolent League (later changed to the Washington Association for Retarded Children) and the NY Welfare League for Retarded Children – were established to provide support for parents advocating for their children.

1939

World War II begins. Hitler orders widespread “mercy killing” of the sick and disabled. The Nazi euthanasia program (code-name Aktion T4) is instituted to eliminate “life unworthy of life.”

Carey, G. (n.d.). Genetics, Politics, and Society. Retrieved from University of Colorado, Psychology website: http://psych.colorado.edu/~carey/hgss2/pdfiles/Ch%2002%20Genetics%20and%20Politics.pdf

MacFarland, B. (n.d.). Nazi Euthanasia Program. Retrieved from Rutgers website: http://www.ncas.rutgers.edu/center-study-genocide-conflict-resolution-and-human-rights/nazi-euthanasia-program

1941

Hitler suspends the Aktion T4 program that murders nearly 100,000 people, but the killing continues through the use of lethal drugs and starvation instead of gassings. In total, an estimated 200,000 people with physical and/or developmental disabilities are killed by lethal injection, starvation, or in the gas chambers. (ibid.)

1946

The Hill-Burton Act (also known as the Hospital Survey and Construction Act) authorizes federal grants to states for the construction of hospitals, public health centers and health facilities for rehabilitation of people with disabilities.

Conscientious objectors of World War II establish the National Mental Health Foundation. These objectors served in state mental institutions instead of fighting. The goal of the foundation is to publicize institutional abuse and move towards deinstitutionalizing people with mental disabilities.

Wright, F. L., Jr. (1947). Out of Sight, Out of Mind. Retrieved from http://www.disabilitymuseum.org/dhm/lib/detail.html?id=1754

1947

Mr. Alan Sampson of the Washington Association for Retarded Children is invited to read a paper about the need for a national parent-focused advocacy organization at the American Association on Mental Deficiency. The 1949 and 1950 AAMD meetings devoted program time to parent group action.

1948

The disabled students’ program at the University of Illinois at Galesburg is directed and founded by Timothy Nugent. This campus becomes the model for subsequent programs and independent living centers for disabled students.

DRES Exhibit Part 1: Overcoming Barriers. (n.d.). Retrieved from University of Illinois at Galesburg website: http://www.library.illinois.edu/archives/guides/disability/exhibit/part1.php

1950

The National Association for Retarded Citizens is founded as the National Association of Parents and Friends of Mentally Retarded Children, following the identification of more than 100 local parent groups throughout the country. A constitution is drafted with the broad purpose “to promote the welfare of mentally retarded people of all ages and to prevent mental retardation.” The constitution is ratified in 1951 — birthdate of The Arc — the nation’s oldest and largest non-profit grassroots organization dedicated to protection of the civil and human rights of people with intellectual and developmental disabilities.

1954

On January 2, President Dwight D. Eisenhower proclaims National Retarded Children’s Week.

1956

Rep. John E. Fogarty

Representative John E. Fogarty (D-RI), Chairman of the House Sub-Committee on Appropriations for the Department of Health, Education and Welfare presents to Congress the NARC “Federal Program of Action for Retarded Children and Adults” advocating for expansion of teaching and research in the education of children with mental retardation.

1958

Social Security Amendments extend Social Security Disability Insurance benefits to dependents of disabled workers.

1960

The Developmental Disabilities Services and Facilities Construction Act is introduced in Congress.

1961

President John F. Kennedy, before his inauguration, creates a transition task force focused on mental retardation. The task force recommends, and after his inauguration, he establishes, the National Institute of Child Health and Human Development. Still in existence today, the institute was charged with conducting and supporting research on mental retardation as well as all aspects of maternal and child health and human development.

President Kennedy creates The President’s Panel on Mental Retardation, a 27-member panel tasked with drafting a comprehensive federal approach to mental retardation. He announced the appointment of “…a panel of outstanding scientists, doctors, and others to prescribe a plan of action in the field of mental retardation.” He added, “The central problems of cause and prevention remain unsolved, and I believe that we as a country, in association with scientists all over the world, should make a comprehensive attack.”

Mental Retardation. (n.d.). Retrieved from John F. Kennedy Presidential Library and Museum website: http://www.jfklibrary.org/JFK/JFK-in-History/Mental-Retardation.aspx

The American National Standard Institute, Inc. (ANSI) publishes “American Standard Specifications for Making Buildings Accessible to, and Usable by, the Physically Handicapped.” This landmark document became the basis for subsequent architectural access codes.

1963

President Kennedy begins a movement to deinstitutionalize disabled people by asking for a decrease “over a number of years and by hundreds of thousands, [in the number] of persons confined” in institutions and that people invent other ways to “to remain in and return to the community the mentally ill and mentally retarded, and thereto restore and revitalize their lives through better health programs and strengthened educational and rehabilitation services.”

State of the Union Address: John F. Kennedy (January 14, 1963) [Transcript of a speech]. (n.d.). Retrieved from infoplease.com website: http://www.infoplease.com/t/hist/state-of-the-union/176.html

1960s New York disAbility Timeline. (n.d.). Retrieved from Museum of disAbility website: http://www.museumofdisability.org/newyork_timeline_1960s.asp

The first known support group for families of children with Down syndrome in the United States, the Mongoloid Development Council, incorporates in the state of Illinois.

Down Syndrome History. (n.d.). Retrieved from News-medical.net website: http://www.news-medical.net/health/Down-Syndrome-History.aspx

http://www.scribd.com/doc/15346177/Original-Mongoloid-Development-Council-Charter

The Mental Retardation Facilities and Community Health Centers Construction Act – PL 88-164 – authorizes federal grants for the construction of public and private nonprofit community mental health centers. The Act is amended in 1970 and expands the federal definition of developmental disability.

1964

The Civil Rights Act, signed by President Johnson, prohibits discrimination on the basis of race, religion, ethnicity, national origin and creed (sex was added at the last minute). The Act outlaws discrimination on the basis of race in public accommodations and employment as well as in federally assisted programs. The act does not protect disabled people.

Lyndon Johnson’s Fight for Civil Rights[Radio broadcast]. (2004, July 2). Washington D.C.: National Public Radio. Retrieved from http://www.npr.org/templates/story/story.php?storyId=3087021

1965

The Social Security Amendments of 1965 create Medicare and Medicaid. These programs provide healthcare to elderly and disabled people. The definition of disability changes from “of long continued and indefinite duration” to “expected to last for not less than 12 months.”

Historical Development. (n.d.). Retrieved from Social Security Administration website: http://www.ssa.gov/history/pdf/histdev.pdf

1966

The President’s Committee on Mental Retardation is established by President Johnson intended to help with early diagnosis and treatment, environmental and medical prevention, identification of legal and human rights, and increased public awareness.

The President’s Committee for People with Disabilities. (n.d.). Retrieved from U.S. Department of Health and Human Services website: http://www.acf.hhs.gov/programs/pcpid/pcpid_history.html

Christmas in Purgatory by Burton Blatt and Fred Kaplan documented conditions at state institutions (in several East coast states that were not named) for people with developmental disabilities. This book helped shape the opinions of the president’s committee on mental retardation and subsequent legislation.

Blatt, B., & Kaplan, F. (1966). Christmas in Purgatory. Boston, MA: Allyn and Bacon.

1971

The University of Notre Dame founds The National Center for Law and the Handicapped as the first legal rights advocacy group in the United States for people with disabilities.

Archives of the University of Notre Dame. (n.d.). Retrieved from University of Notre Dame website: http://archives.nd.edu/search/ndr/ndrv10.htm

In Wyatt v. Stickney, the Middle District of Alabama U.S. District court mandates that people in institutions and residential facilities have a constitutional right “to receive such individual treatment as [would] give them a realistic opportunity to be cured or to improve his or her mental condition.” This is the first law that requires mentally disabled people receive education.

Wyatt v. Stickney, 325 F. Supp. 781 (M.D. Ala. 1971).

The Fair Labor Standard Act is amended, allowing disabled people who are not blind into the workshop system.

1972

The Mongoloid Development Council changes its name to the National Association for Down Syndrome. Today, the National Association for Down Syndrome (NADS) supports families in the Chicago Metropolitan area.

History of NADS. (n.d.). Retrieved from National Association for Down Syndrome website: http://www.nads.org/history/index.html

http://www.scribd.com/doc/11545490/Down-Syndrome-Name-Change-from-MongoloidCharter-Document-filed-by-Kay-McGee 

Ed Roberts establishes The Berkeley Center for Independent Living, with help from the Rehabilitation Administration. This becomes the first independent living center for disabled people.

Ed Roberts Campus About. (n.d.). Retrieved from Ed Roberts Campus website: http://edrobertscampus.org/about.php

The U.S. District Court rules in Mills v. Board of Education that the District of Columbia cannot exclude disabled children from the public schools.

Mills v. Board of Education of the District of Columbia, 348 F. Supp. 866 (D.D.C. 1972), http://outreach.umf.maine.edu/files/2009/10/millsvboardofed.pdf

PARC v. Pennsylvania overturns state laws that prohibit disabled children from entering public schools. This decision is thought to have led to the creation of the Education for All Handicapped Children Act in 1975.

Archived: 25 Year History of the IDEA. (n.d.). Retrieved from U.S. Department of Education website: http://www2.ed.gov/policy/speced/leg/idea/history.html

The Pennsylvania Association for Retarded Children v. Commonwealth of Pennsylvania, 343 F. Supp. 279 (E.D. Pa 1972).

The Social Security act is amended to create the Supplemental Security Income (SSI) program. This provides funds to support adult disabled people to help relieve parents of some of the costs of supporting a disabled person.

Social Security Amendments of 1972: Summary and Legislative History. (n.d.). Retrieved from Social Security Administration website: http://www.ssa.gov/policy/docs/ssb/v36n3/v36n3p3.pdf

The Houston Cooperative Living Residential Project is founded and becomes the model for all other independent living centers.

New York ARC v. Rockefeller is filed, seeking to end the horrifying conditions at the Willow Brook State School. Geraldo Rivera records a film there exposing the institution and the egregious violations of these people’s civil rights. For many years, hundreds of the people in the institution were injected with diseases (mainly Hepatitis A) with the intention of finding vaccines and cures. There are more than 6,000 people in a building intended for 4,000 and the building is severely understaffed and under-maintained, with no plumbing. Thousands are eventually moved into other care facilities such as community-based living.

1973

Parents and professional caregivers of people with Down syndrome form the National Down Syndrome Congress devoted to increasing the level of care and the possibilities for people with the condition.

History of the National Down Syndrome Congress. (n.d.). Retrieved from National Down Syndrome Congress website:   http://www.ndsccenter.org/about/history.php

The Rehabilitation Act of 1973 is passed. Sections 501, 503 and 504 prohibit discrimination in federal programs and services and all other programs or services receiving federal funds. Key language in the Rehabilitation Act, found in Section 504, states, “No otherwise qualified handicapped individual in the United States, shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.”

Rehabilitation Act, Section 504. (n.d.). Retrieved from Federal Communications Commission website: http://transition.fcc.gov/cgb/dro/504/disability_primer_1.html

The Consortium for Citizens with Disabilities push for the creation of the Developmentally Disabled Assistance and Bill of Rights Act of 1975, as well as the Education for All Handicapped Children Act of 1975.

1974

Halderman v. Pennhurst is filed in Pennsylvania on behalf of the residents of the Pennhurst State School and Hospital, highlighting conditions at state schools for people with mental retardation. It becomes a precedent in the battle for deinstitutionalization, establishing a right to community services for people with developmental disabilities.

Halderman v. Pennhurst, No. 74-1345 (E.D. Pa Feb. 9, 1998), http://www.paed.uscourts.gov/documents/opinions/98D0144P.pdf

1975

The Education of All Handicapped Children Act (PL 94-142) requires free, appropriate public education in the least restrictive setting. This Act is later renamed The Individuals With Disabilities Education Act (IDEA).

Archived: 25 Year History of the IDEA. (n.d.). Retrieved from U.S. Department of Education website: http://www2.ed.gov/policy/speced/leg/idea/history.html

The Developmental Disability Bill of Rights Act establishes protection and advocacy (P & A) services. The Act also provides guidelines of rights of people in institutions and helps fund programs for people with developmental disabilities.

The Community Services Act begins the Head Start Program, requiring that programs must reserve 10% of their openings for disabled children.

The American Coalition of Citizens with Disabilities is created and becomes the top disability rights organization of the decade.

American Coalition of Citizens with Disabilities (ACCD). (n.d.). Retrieved from The Bancroft Library at University of California at Berkeley website: http://bancroft.berkeley.edu/collections/drilm/collection/items/accd.html

The Association of Persons with Severe Handicaps (TASH) is created in response to PARC v. Pennsylvania by people who work with special education workers. The group asks for complete deinstitutionalization and the end of abusive behavior modification therapies.

TASH History. (n.d.). Retrieved from The Association of Persons with Severe Handicaps (TASH) website: http://tash.org/about/history/

U.S. Supreme Court rules in O’Connor v. Donaldson that people cannot be institutionalized in a psychiatric hospital against their will unless they are determined to be a threat to themselves or to others.

O’Connor v. Donaldson, 422 U.S. 563 (1975).

Parent and Training Information Centers are developed to help parents of disabled children exercise their rights under the Education for All Handicapped Children Act of 1975.

Law and Exceptional Students Time Line. (n.d.). Retrieved from University of North Carolina Chapel Hill website: http://www.unc.edu/~ahowell/exceplaw.html

1976

The Disability Rights Center is created in Washington, D.C. with funding and endorsement by Ralph Nader’s Center for the Study of Responsive Law. This center specializes in protecting disabled consumers.

Ralph Nader 2008 Independent Candidate for President. (n.d.). Retrieved from George Washington University website: http://www.gwu.edu/~action/2008/cands08/nadermain.html

The Legal Services Corporation Act is amended to include disabled people living in poverty as eligible for federally funded legal services.

1978

Title VII of the Rehabilitation Act is amended to add the National Council of the Handicapped to the U.S. Department of Education and adds federal funding for private independent living centers.

Handicapping America by Frank Bowe examines all the policies and mentalities that work together to deny equal rights to disabled people. This becomes an extremely important work among disability rights activists and organizations.

Bowe, F. (1978). Handicapping America: Barriers to disabled people. Harper & Row.

1979

National Down Syndrome Society is created and gains official nonprofit status in the areas of education, research, and advocacy through the strong efforts of Betsey Goodwin and Arden Moulton.

About National Down Syndrome Society. (n.d.). Retrieved from National Down Syndrome Society website: http://www.ndss.org/en/About-NDSS/NDSS-History/

In Southeastern Community College v. Davis, the Supreme Court rules that under Section 504 of the Rehabilitation Act of 1973, programs receiving federal funds must make “reasonable modifications” to enable the participation of otherwise qualified disabled individuals. This decision is the Court’s first ruling on Section 504 establishing reasonable modification as an important principle in disability rights law.

Southeastern Community College v. Davis, 422 U.S. 397 (1979), http://scholar.google.com.

In Berkeley, California, the Disability Rights Education and Defense Fund (DREDF) is founded as the most important disability rights legal advocacy center. It plays a role in important legal cases in the 1980s and 1990s. It continues its work today.

About Disability Rights Education and Defense Fund. (n.d.). Retrieved from Disability Rights Education and Defense Fund website: http://www.dredf.org/about.shtml

1980

Section 1619 is added to the Social Security Amendments. This section was intended to remove incentives for people with disabilities to stay out of the workforce who are on Social Security. This prompts a revision of who qualifies for social security, causing thousands of people to stop receiving benefits.

The Civil Rights of Institutionalized Persons Act (CRIPA) is enacted to protect the rights of people in state or local correctional facilities, nursing homes, mental health facilities and institutions for people with intellectual and developmental disabilities. The Act authorizes the US Department of Justice to protect the rights of institutionalized persons.

1981

The parents of “Baby Doe” in Bloomington, Indiana are advised by their doctors to decline surgery to unblock their newborn’s esophagus because the baby has Down syndrome. Although disability rights activists try to intervene, “Baby Doe” starves to death before legal action is taken.

The Reagan Administration removes benefits for hundreds of thousands of people with disabilities, prompting several disabled people to commit suicide. Disability rights activists fight this.

Medicine: The Stormy Legacy of Baby Doe. (1983, September 26). Time Magazine. Retrieved from http://www.time.com/time/magazine/article/0,9171,949828,00.html

1984

In Bowen v. American Hospital Association, the “Baby Doe” case is presented to the Supreme Court. This case results in the Child Abuse Prevention and Treatment Act Amendments. This case also brought to light many other similar instances.

Bowen v. American Hospital Association, 476 U.S. 610 (1986).

In response to the termination of hundreds of thousands of people from Social Security Disability income, the Social Security Disability Reform Act is created. The law requires the terminated individuals continue to receive benefits until the end of their appeals.

1985

In Burlington School Committee v. Department of Education, the Supreme Court decides that if a disabled child requires special or private education, the school must pay the additional expense.

School Committee of the Town of Burlington, Massachusetts v. Department of Education of Massachusetts, 471 U.S. 35 (1985), http://www.maine.gov/education/speced/cds/training/miscellaneous/burlington.pdf.

In Cleburne v. Cleburne Living Center, the Supreme Court rules that localities are prohibited from using zoning laws to exclude facilities for disabled people from residential areas solely on the grounds that its residents are disabled.

City of Cleburne Texas, et al. v. Cleburne Living Center, inc., 473 U.S. 432 (1985), http://scholar.google.com.

1986

“Toward Independence,” a report of the National Council on the Handicapped, outlines the legal status of Americans with disabilities and documents the existence of discrimination. It cites the need for federal civil rights legislation (which eventually passes as the Americans with Disabilities Act of 1990).

Toward Independence: An Assessment of Federal Laws and Programs Affecting Persons with Disabilities — With Legislative Recommendations. (n.d.). Retrieved from National Council on Learning website: http://www.ncd.gov/publications/1986/February1986

The Employment Opportunities for Disabled Americans Act is created, providing disabled people on Social Security Income and Insurance to continue to remain on Social Security Income and Insurance even if they gain employment.

The Education of the Handicapped Act Amendments of 1986 – P.L. 99-457 – authorizes assistance to states to address the needs of infants and toddlers (children from birth through age 2) with disabilities and their families. This includes infants and toddlers who are at risk of having a substantial developmental delay if early intervention services are not provided, if a state chooses to serve those children and their families.

1988

The Air Carrier Access Act bans airlines from charging more for airfare or refusing to serve people with disabilities than passengers without disabilities.

The Fair Housing Act amendments prohibit housing discrimination against people with disabilities and families with children. It also provides for architectural accessibility of certain new housing units, renovation of existing units and accessibility modifications at the renter’s expense.

The Technology-Related Assistance Act for Individuals with Disabilities is created, providing federal funds to allow access to technology that would help those individuals.

Honig v. Doe rules that schools cannot suspend, expel, or move disabled children from their designated setting without a due-process hearing. This reaffirms a rule established in the Education for All Handicapped Children Act.

Honig, California Superintendent of Public Instruction v. Doe, 484 U.S. 305 (1988), http://scholar.google.com.

1989

The Omnibus Budget Reconciliation Act expands Early Periodic Screening Diagnostic Treatment benefits covered under Medicaid to ensure that all treatments allowed under the definition of “medical assistance” are covered in all states in response to evidence of limited coverage for children with mental and developmental disabilities.

1990

The Americans with Disabilities Act is signed by George H.W. Bush. The Act provides comprehensive civil rights protection for people with disabilities. Closely modeled after the Civil Rights Act and Section 504, the law is the most sweeping disability rights legislation in history. It mandates that local, state and federal governments and programs be accessible, that businesses with more than 15 employees make “reasonable accommodations” for disabled workers and that public accommodations such as restaurants and stores make “reasonable modifications” to ensure access for disabled members of the public. The act also mandates access in public transportation, communication, and in other areas of public life.

The Education for All Handicapped Children act is renamed and amended to become the Individuals with Disabilities Education Act (IDEA).

Archived: 25 Year History of the IDEA. (n.d.). Retrieved from U.S. Department of Education website: http://www2.ed.gov/policy/speced/leg/idea/history.html

1993

A legal case of four men convicted of sexual assault and conspiracy for raping a 17-year old mentally disabled woman in Glen Ridge, New Jersey, highlights the widespread sexual abuse of people with developmental disabilities.

Hanley, R. (1993, March 17). 4 Are Convicted in Sexual Abuse Of Retarded New Jersey Woman. The New York Times.

Holland v. Sacramento City Unified School District reinforces that it is a right for disabled children to attend public schools with children who do not have disabilities.

Board of Education Sacramento Unified School District v. Holland, 786 F. Supp. 874 (U.S. District Court, E.D. California 1992, http://scholar.google.com.

1995

The American Association of People with Disabilities is founded in Washington, D.C.

The American Association of People with Disabilities. (n.d.). Retrieved from The American Association of People with Disabilities website: http://www.aapd.com/

Helen L. v. DiDario rules that continued institutionalization of a person when it was not medically necessary when home-care is an option is a violation of that person’s constitutional rights.

Helen L. v. DiDario, No. 92-6054 (U.S. District Court E.D. Pennsylvania Jan. 27, 1994), http://www.justice.gov.

Sandra Jensen, a member of People First, is denied a heart-lung transplant by the Stanford University School of Medicine because she has Down syndrome. After pressure from disability rights activists, Stanford University School of Medicine administrators reverse their decision. In 1996, Jensen becomes the first person with Down syndrome to receive a heart-lung transplant.

Case: Sandra Jensen. (n.d.). Retrieved from Stanford University website: http://www.stanford.edu/~mvr2j/sfsu09/extra/SandraJensen.pdf

1996

New legislation removes more than 150,000 children with disabilities from Social Security Income, along with people with alcohol and drug addictions.

Trends in the Social Security and Supplemental Security Income Disability Programs. (n.d.). Retrieved from U.S. Social Security Administration website: http://www.ssa.gov/policy/docs/chartbooks/disability_trends/sect04.html

2000

The Developmental Disabilities Assistance and Bill of Rights Act of 2000 expands the Developmental Disabilities Act to develop a process for identifying and reporting on progress achieved through advocacy, capacity building, and systemic change activities resulting in individuals with developmental disabilities and their families participating in the design of and having access to needed community services, individualized supports, and other assistance that promotes self-determination, independence, productivity, and integration in all facets of community life.

The Administration on Developmental Disabilities in the Department of Health and Human Services is re-authorized.

2001

The Commonwealth of Virginia House of Delegates officially expresses regret for the harm its eugenics laws caused between 1924 and 1979.

2005

Rosemary Kennedy

Rosemary Kennedy, the oldest sister of the late U.S. President John F. Kennedy, who had an intellectual disability, dies at the age of 86. She was the inspiration behind Kennedy’s advocacy for people with disabilities and was the reason her sister Eunice Kennedy Shriver created the Special Olympics in 1968.

Rosemary Kennedy. (n.d.). Retrieved from John F. Kennedy Presidential Library and Museum website: http://www.jfklibrary.org/JFK/The-Kennedy-Family/Rosemary-Kennedy.aspx

Rosemary’s Diary: Her Life–Before the Lobotomy : Kennedys: Third child of Rose and Joseph is 76 now, living in a convent school since a 1941 operation intended to calm her mood swings. Her teen-age writings describe tea dances and trips. (1995, August 6). Los Angeles Times. Retrieved from http://articles.latimes.com/1995-08-06/news/mn-31942_1_rose-kennedy

2007

American Association of Mental Retardation changes their name to American Association on Intellectual and Developmental Disabilities. This organization is best known for officially defining the condition of differently-abled and its success in abolishing the death penalty for those who are differently-abled in the United States.

World’s Oldest Organization on Intellectual Disability Has a Progressive New Name. (2006, November 2). Retrieved from American Association on Intellectual and Developmental Disabilities website: http://www.aaidd.org/news/news_item.cfm?OID=1314

2008

Senators Kennedy and Brownback support the Prenatally and Postnatally Diagnosed Conditions Awareness Act (S. 1810), which is ultimately passed by Congress. The Act states that families who receive a diagnosis of Down syndrome or any other condition will be offered up-to-date and accurate information about the condition and will be connected with support services to offer assistance.

Amendments to the Americans with Disabilities Act (ADA) are signed into law in order to clarify and reiterate who is covered by the law’s civil rights protections. The “ADA Amendments Act of 2008” revises the definition of “disability” to more broadly encompass impairments that substantially limit major life activity.

2010

President Barack Obama signs Rosa’s Law (s.2781) requiring the removal of the words “mental retardation” and “mentally retarded” from federal laws. This is a replication of a law adopted in Maryland after Rosa Marcellino’s family worked to pass legislation in the Maryland General Assembly.

2012

Global Down Syndrome Foundation and National Down Syndrome Congress publish a prenatal testing pamphlet called “You are pregnant. What if your doctor recommends a test to see if your baby has Down syndrome?” and start a national distribution campaign in order to ensure that pregnant women receive accurate information at the time of diagnosis, as mandated by the 2008 Kennedy-Brownback legislation.

The U.S. Department of Health and Human Services (HHS) announces the creation of a new Administration for Community Living (ACL) within HHS. The ACL will bring together the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities into a single agency that supports both cross-cutting initiatives and efforts focused on the unique needs of individual groups, such as children with developmental disabilities or seniors with dementia.

2014

Congress passes the Achieving a Better Life Experience (ABLE) Act, allowing the creation of tax-free savings accounts for individuals with disabilities to cover expenses such as education, housing, and transportation.