down syndrome timeline
1866
British Physician, John Langdon Down, was the first to publish findings associated with the distinguishing, physical characteristics of people with Down Syndrome. He referred to the people as ‘Mongoloids’ and called the syndrome “Mongolism” because the physical characteristics resembled those of people from Mongolia.
1917
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.
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.
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.
1940
In Germany, Adolf Hitler implemented the Akiton-4 program in which people with Down Syndrome and other disabilities were euthanized. He suspended the program the following year. During this period over 200,000 suffered and were killed in concentration camps.
1959
Dr. Jerome Lejeune, a French physician, discovered that Down Syndrome was the result of a chromosomal abnormality. He found out that people with DS had forty-seven chromosomes, which is one more than the normal amount forty-six. Shortly afterwards, he discovered that this extra chromosome, whether partial or complete, appeared at chromosome number twenty-one. This led to the creation of the term Trisomy 21.
1960
Kay and Marty McGee founded the Mongoloid Development Council (MDC) in Chicago shortly after their daughter Tricia was born with DS. During this time, parents with DS children were advised to institutionalize their newborns. But the McGee’s decided against this and instead sought to create a supportive space where they could reach out to other parents of DS children and professionals and advocate for the individual value of individuals with Down Syndrome. The MDC would eventually be renamed the National Association for Down Syndrome in 1972 (NADS). NADS is the oldest organization in US serving people with DS and their families.
1961
A group of geneticists from around the world were able to change the name of the condition from Trisomy 21 to Down Syndrome (named after John Langdon Down).
1965
The World Health Organization accepted Down Syndrome as the standard name for the condition.
1973
The National Down Syndrome Congress (NDSC) was formed.
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).
1979
The National Down Syndrome Society (NDSS) was created and gained official nonprofit status in the areas of education, research, and advocacy through the strong efforts of Betsey Goodwin and Arden Moulton.
Research is published that describes the impact of stimulation on infants and children with Down syndrome and compares the IQs of children raised in institutions versus those raised at home. Children with Down syndrome raised in institutions had an average IQ of 20 to 30, while those raised at home with no specific attention to stimulation averaged about 40, and those raised at home with stimulation had an average IQ of 55. This study also found that IQ declines with age in people with Down syndrome, regardless of their environment.
1984
The Baby Doe Amendment was added to the Child Abuse Law passed in 1984. The amendment set up specific criteria and guidelines for treatment of seriously ill and/or newborns with disabilities, and the law mandates that states receiving federal money for child abuse programs develop procedures to report medical neglect, which the law defines as the withholding of treatment unless a baby is irreversibly comatose or the treatment is “virtually futile” in terms of the newborn’s survival. Opinions about a child’s “quality of life” are not valid reasons under this law for withholding medical care.
The legislation was created based on two prominent cases of female babies, known as Baby Doe (Indiana) and Baby Jane Doe (New York), who died as a result of their parents electing to withhold proper medical treatment from them because of their 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.
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.
2008
US 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.
2012
The 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.
Sources:
http://www.nads.org/history/medical.html
http://www.ndss.org/About-NDSS/NDSS-History/
http://www.globaldownsyndrome.org/about-down-syndrome/history-of-down-syndrome/
British Physician, John Langdon Down, was the first to publish findings associated with the distinguishing, physical characteristics of people with Down Syndrome. He referred to the people as ‘Mongoloids’ and called the syndrome “Mongolism” because the physical characteristics resembled those of people from Mongolia.
1917
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.
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.
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.
1940
In Germany, Adolf Hitler implemented the Akiton-4 program in which people with Down Syndrome and other disabilities were euthanized. He suspended the program the following year. During this period over 200,000 suffered and were killed in concentration camps.
1959
Dr. Jerome Lejeune, a French physician, discovered that Down Syndrome was the result of a chromosomal abnormality. He found out that people with DS had forty-seven chromosomes, which is one more than the normal amount forty-six. Shortly afterwards, he discovered that this extra chromosome, whether partial or complete, appeared at chromosome number twenty-one. This led to the creation of the term Trisomy 21.
1960
Kay and Marty McGee founded the Mongoloid Development Council (MDC) in Chicago shortly after their daughter Tricia was born with DS. During this time, parents with DS children were advised to institutionalize their newborns. But the McGee’s decided against this and instead sought to create a supportive space where they could reach out to other parents of DS children and professionals and advocate for the individual value of individuals with Down Syndrome. The MDC would eventually be renamed the National Association for Down Syndrome in 1972 (NADS). NADS is the oldest organization in US serving people with DS and their families.
1961
A group of geneticists from around the world were able to change the name of the condition from Trisomy 21 to Down Syndrome (named after John Langdon Down).
1965
The World Health Organization accepted Down Syndrome as the standard name for the condition.
1973
The National Down Syndrome Congress (NDSC) was formed.
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).
1979
The National Down Syndrome Society (NDSS) was created and gained official nonprofit status in the areas of education, research, and advocacy through the strong efforts of Betsey Goodwin and Arden Moulton.
Research is published that describes the impact of stimulation on infants and children with Down syndrome and compares the IQs of children raised in institutions versus those raised at home. Children with Down syndrome raised in institutions had an average IQ of 20 to 30, while those raised at home with no specific attention to stimulation averaged about 40, and those raised at home with stimulation had an average IQ of 55. This study also found that IQ declines with age in people with Down syndrome, regardless of their environment.
1984
The Baby Doe Amendment was added to the Child Abuse Law passed in 1984. The amendment set up specific criteria and guidelines for treatment of seriously ill and/or newborns with disabilities, and the law mandates that states receiving federal money for child abuse programs develop procedures to report medical neglect, which the law defines as the withholding of treatment unless a baby is irreversibly comatose or the treatment is “virtually futile” in terms of the newborn’s survival. Opinions about a child’s “quality of life” are not valid reasons under this law for withholding medical care.
The legislation was created based on two prominent cases of female babies, known as Baby Doe (Indiana) and Baby Jane Doe (New York), who died as a result of their parents electing to withhold proper medical treatment from them because of their 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.
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.
2008
US 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.
2012
The 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.
Sources:
http://www.nads.org/history/medical.html
http://www.ndss.org/About-NDSS/NDSS-History/
http://www.globaldownsyndrome.org/about-down-syndrome/history-of-down-syndrome/