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Eastern State Hospital
This was the first institution in the U.S established for people with disabilities (referred to as "insane", "lunatics", "idiots"). Over the next 200 years, children with developmentally disabilities were institutionalized and abandoned by their families due to societies standards. Institutionalization was not forced, but parents were often pressured or encouraged to institutionalize their children by doctors and told to forget about that family member. -
John Langdon Down
British physician who first described Down Syndrome as "Mongolism". -
Introduction to Eugenics
Sir Francis Galton, a cousin of Darwin, came up with the term “eugenics” in 1883. Eugenics is the practice of "improving" the human population by selectively mating and "breeding out" those with disease or disabilities. Americans embraced the eugenics movement and passed laws to prevent people with disabilities from moving to the U.S., marrying or having children. Eugenics laws led to the forced institutionalization and forced sterilization of disabled adults and children. -
Forced sterlization
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.” -
Jerome Lejeune
French Pediatrician/Geneticist Professor Jerome Lejeune discovered that individuals with Down syndrome have an extra chromosome. This was sparked by Lejeune's observing the fingerprints and lines in the hands of people with Down Syndrome. He made the connection that these form during embryonic development, which led to his discovery of chromosome abnormalities during embryo formation. Chromosome studies confirmed the diagnosis of Down Syndrome. At the time it was first called Trisomy 21. -
The National Association for Down Syndrome.
NADS was founded by Marty and Kay McGee after their daughter was born with Down Syndrome and their physician recommended placing their child in an institution. They created this association for parents also going against this medical advice at the time. Parents helping parents teamed together to hold conferences that began taking place in Chicago, educating the public. Due to no public programs for children with Down Syndrome, parents created programs in churches and other public buildings. -
Deinstitutionalization
President Kennedy begins a movement to deinstitutionalize people with disabilities. He urged the return to society, becoming involved in better health programs and the strengthening of educational and rehabilitation services. -
Name change
The World Health Organization drops the terms "mongoloid" or "mongolism" after the request from the Mongolian People's Republic. It is now considered unacceptable and no longer in use. The condition was changed to be called Down Syndrome at this time. -
NADS name change
The Mongoloid Development Council changes its name to the National Association for Down Syndrome. -
National Down Syndrome Congress
Professionals and parents of children with Down syndrome form the National Down Syndrome Congress. This advocacy group strives to increase the level of care and the possibilities for people with Down Syndrome, as well as providing the public with education on Down Syndrome. Then, the Rehabilitation Act of 1973 is passed, which prohibits discrimination in federal programs and services and all other programs or services receiving federal funds. -
National Down Syndrome Society
Founded by Betsey Goodwin and Arden Moulton, the National Down Syndrome Society is created and gains official nonprofit status in the areas of education, research, and advocacy. This society ensures equal rights and opportunities for people with Down Syndrome. It also encourages research, and provides leadership in public policy. -
Treatment towards people with Down Syndrome
Up until the mid 1980's, there were countless cases of doctors refusing to perform lifesaving procedures such as heart correcting surgery. Doctors and families were also found starving their babies with Down Syndrome to death, avoiding more lifesaving procedures. In other cases, mothers were told their babies died during birth, while in reality doctors and fathers were having these infants with Down Syndrome sent away to be institutionalized -
Baby Doe Law
In 1982 a baby known as “Baby Doe” was born in Indiana, with Down syndrome and a birth defect requiring surgery. The parents refused the surgery because of the child’s Down syndrome, ultimately starving the baby to death. The Baby Doe Law is an amendment to the Child Abuse Prevention and Treatment Act of 1974, passed in 1984, that sets specific criteria and guidelines for the treatment of disabled newborns in the United States, regardless of the wishes of the parents. -
Shift to better treatment
During the late 1990's, over $3 million was dedicated to research by national institutions. Treatment was beginning to shift to evidence-based methods, supported by new research and books. By the end of the century, all of chromosome 21 had been genetically mapped. Life expectancy also began to increase as more scientific research, lifesaving surgeries and medications were introduced. -
Removing the "R" word
President Barack Obama signs Rosa’s Law, requiring the removal of the words “mental retardation” and “mentally retarded” from federal laws. It has been replaced with "intellectual disability"