...more Down syndrome history...

What has Changed Today?

Down syndrome history

Starting in about the mid 1600’s through 1850, places called “poorhouses” were established. Eventually they grew to be called institutions. These places generally housed a smaller number of people, usually 10-30, although there were a few larger buildings that held over 1000 people.

The residents (if you could call them that; some were almost prisoners) were a mixed group of the poor, the blind, the deaf, the mentally ill, and the developmentally disabled, or mentally retarded. In addition, men, women, and children were housed in the same facilities. Very few of these places in Down syndrome history were desirable. Many treated the residents poorly; some people were shackled and a few found frozen dead, still shackled. Many people lived in filth and no effort was made to better their conditions. There were precious few places that were run well and the residents treated humanely and with kindness.

Around 1850-1899 institutions began to separate people with intellectual disabilities from the general poor and mentally challenged, and places were built specifically for them. Men, women, and children were housed in different buildings.

Through the first half of the 1900’s, institutions became more school-like. They strove to teach the residents, rather then just house them. Many places had vocational-like programs, and those who could learn a skill had the opportunity for outside employment.

However well-intentioned institutions were, in Down syndrome history most of them were not very nice places to live and grow up. There was not a lot of love. There was a substantial amount of abuse, physically, verbally, and sexually. There was the abuse of neglect, and severe overcrowding...but there also were good people in Down syndrome history who worked for the institutions as well; they had the inmates’ best interests at heart and did the best they could, however with staff shortages and small budgets weren’t able to do a lot for the residents.

One of the most infamous institutions was Willowbrook State School located in Staten Island, New York. During the 1960’s there was a controversial hepatitis study done using healthy children. The healthy kids were infected on purpose in order to study the effects of a drug called gamma globulin. In the 1970’s, investigative reporter Geraldo Rivera exposed the extreme overcrowding, abuse, and neglect at the school. All this caused such public outrage that it forced the state of NY to change the way it ran the school. In 1983, the state announced plans to close the school. It took five years to place all the residents but Willowbrook was finally closed in 1987.

The Power of Parents in Down syndrome History

As early as the 1930’s there have been groups of parents banding together to fight for their children, including children with Down syndrome. As these groups grew, each saw that if they united on a national level so much more could be accomplished. Their children were excluded from public school, discriminated against, and shunned by the general public. Parents wanted to improve the welfare of their children and to accomplish this goal in 1952 The National Association for Retarded Children (now named The Arc ) was formed. Their mission statement is- “The Arc of the United States advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities.”

Other organizations specifically for Down syndrome were created. National Association for Down Syndrome was founded in 1961 by Chicago parents who refused to adhere to the advice of doctors and chose to keep and raise their children with Down syndrome at home. In 1973 a group broke away from The Arc and formed The National Down Syndrome Congress . In 1979 Betsy Goodwin, mother of a child with Down syndrome, and her friend Arden Moulton, discovered that support and resources available to parents of a child with Down syndrome were very limited. Through their efforts the National Down Syndrome Society was formed.

All of these organizations in Down syndrome history have been the reason early intervention and other life-altering services have been made available to people with Down syndrome. Emphasis is placed on advocacy, scientific research, and involvement in the political process.

Each state has a federally mandated Developmental Disabilities Agency . Your child with Down syndrome is eligible for these crucial services. Services like Early Intervention, physical and occupational therapies, and a case worker who will follow your child’s progress and work with you to help your child reach his/her fullest potential. There are adult services to help with job training and placement, and help with where and how the individual with Down syndrome chooses to live.

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