HISTORY OF DEVELOPMENTAL DISABILITIES IN THE UNITED STATES

Jen Drganc for Jubilee Association of Maryland

Early America

18th – Early 19th Century The Enlightenment movement becomes popular in both Europe and the United

States. At its core is the idea that all people are capable of reasoning and that our sameness as people is more important than our differences. This philosophy paves the way for the opening of state schools for the education of individuals with disabilities. Schools for the deaf and blind are established. The goal of the state schools is to prepare individuals with disabilities for employment and independence. However, outside the schools, jobs and other opportunities are not developed.

Late 1800’s – 1920’s Schools adopt a medical model. Focus moves from education and independence to

custodial care. Younger children are placed in the care of state schools. The eugenics movement

prevents people with disabilities from moving to the United States, marrying, or having children. In many instances, it leads to the institutionalization and forced sterilization of disabled people, including children.

The Great Depression People with disabilities are viewed as financial burdens. Infants are now routinely left

in the care of the state schools. Schools became grossly overcrowded and underfunded. Life expectancy falls to age 18.

For a detailed overview of the Disability Rights Movement see: www.sfsu.edu/~dprc/chronology/chron70s.html

1960’s & 1970’s

1960’s President John F. Kennedy raises awareness of the status of people with

developmental disabilities. He appoints a special President’s Panel on Mental Retardation to improve and reform existing services and to develop new programs for people with mental retardation. The civil rights movement inspires growth of the disability rights movement.

1970’s A series of newspaper articles and a televised exposé of the deplorable

conditions at the Willowbrook State School of New York create enormous public outcry. The movement to

deinstitutionalize people with developmental disabilities gains momentum. In 1972, the world’s first Center for Independent Living is opened in Berkeley, California. Section 504 of the Rehabilitation Act of 1973, addressing discrimination of people with disabilities, is passed. In 1975, the Education for All Handicapped

Children Act (PL 94‐142) is passed, guaranteeing the right of children with disabilities to be educated in public schools with non‐disabled peers.

For a detailed overview of the Disability Rights Movement see: www.sfsu.edu/~dprc/chronology/chron70s.html

Mennonite ties to state hospitals Conscientious objectors More than 1,000 Mennonite conscientious objectors performed public

service work in the nation's public mental hospitals during the war, substituting for male employees who left for military service.

The conditions they observed in state mental hospitals impelled many young Mennonites to work for change in the public system and to help create the Mennonites' own mental health system.

Jacob Harnly lived in Manheim, Pa., the son of a meatcutter. "I grew up in a Mennonite background, and pacifism was part of our religious philosophy.“

"First you had to get used to the odors," he recalled." Then the goal was to have as many people doing useful things around the cottage, to keep them active, a kind of occupational therapy. A lot went out to work in the dairy, some in the vegetable garden, some in the orchard."

http://psychnews.psychiatryonline.org/newsArticle.aspx?articleid=110003

John F. Kennedy’s pioneering movement: the emergence of mental retardation into public awareness.

Life In The Shadows:

Kennedy influence on the state of disabilities in the US

The Kennedy family was influenced by their sister Rosemary Kennedy who had been deemed mentally handicapped after a surgery.

They have quite possibly made more advances for those with developmental disabilities than any other family in the United States. Special Olympics, Best Buddies, The Joseph P. Kennedy Foundation, the Kennedy-Krieger Institute, the ADA—accessible community, the IDEA--the right to an education, employment initiatives for the disabled.

President Kennedy and his family forever changed public attitudes toward people with intellectual disabilities. Their influence on related policies and programs can still be seen today. In the twenty years following the Kennedy administration, Congress passed 116 acts or amendments providing support for people with intellectual disabilities and their families.

Parents and families were told to rid themselves of the terrible heartache of raising a child with developmental disabilities, how have parents and families influenced the services we now provide today? How have things changed in the last 40years in how we approach newborns and children with developmental disabilities?Many of us have individuals that lived in institutions growing up. What do you imagine their experiences were? How might their experiences be different than those children that grew up in their family home?How has your faith, values, or personal experience affected your decision to work in the field of developmental disabilities?

Discussion Questions

Working in a State Hospital

Carolyn Seegers—story

State Hospitals today

Maryland 2011

State Hospitals today

The United States

Jubilee History

The agency grows up

Community Based Services

Today With the closing of the institutions and advancements in

modern medicine, 90% of people with developmental disabilities are living into adulthood. The life expectancy of most people with DD approaches that of the general population. The need for trained medical providers is paramount.

Types of settings: Group homes (ALU), ICF/MR, family homes, foster care, and apartments (CSLA).

System is driven by independent wants and desires: money follows the person, IP meetings, person-centered supports, person-directed plans.

Self-advocacy, person-first language, family directed services “End the R Word,” anti-bullying campaigns, neurodiversity. For a detailed overview of the Disability Rights Movement see:

www.sfsu.edu/~dprc/chronology/chron70s.html

Moving out of the state hospital

Tammy Morton Johnson—story

How are community based services different than living in institutions? How are Jubilee’s smaller homes different than living in an larger institution?How have community based services replicated institutional life? In what ways we can change those things about community based services? What are the stigmas that people with developmental and intellectual disabilities in the US face today? Are they different than they were 40 years ago? What do people with DD/IDD face in other parts of the world?

Discussion Questions

Self-advocacy