Direct Support News — National coverage of direct support, I/DD, Medicaid, and policy.

Direct Support News

The Long Road Home

A 22-part history of how people with intellectual and developmental disabilities in the United States moved from large institutions to lives in the community.

8 of 22 published

  1. Part 1 ·

    Howe's 1848 school to teach, not confine

    In 1848 Massachusetts paid $2,500 a year for three years to test whether Samuel Gridley Howe could teach 10 children with intellectual disabilities. This story follows that experiment, and how a school meant to teach and send children home drifted toward lifelong custody.

  2. Part 2 ·

    The Kallikak study and eugenics, 1912

    In 1912 psychologist Henry Goddard claimed a New Jersey family proved intellectual disability was inherited, fueling calls for lifelong segregation. This story looks at the study, the woman at its center and how its claims fell apart.

  3. Part 3 ·

    Buck v. Bell and forced sterilization

    In Buck v. Bell on May 2, 1927, the Supreme Court ruled 8-1 that Virginia could sterilize Carrie Buck without her consent. This story follows the arranged test case, what it unleashed and what historians later found.

  4. Part 4 ·

    Sonoma Developmental Center, 1891-2018

    California's Sonoma Developmental Center opened on Nov. 24, 1891, and its last resident moved out on Dec. 17, 2018. This story follows one institution from two mothers' idea to a detailed closure plan.

  5. Part 5 ·

    Fernald's 'Science Club' radiation studies, 1946-53

    Between 1946 and 1953, MIT researchers gave Fernald State School residents in Massachusetts cereal with radioactive tracers, without informed consent. A 1994 task force found little health risk but a failure to protect residents; this story follows that finding, a $1.85 million settlement and Fernald's closure.

  6. Part 6 ·

    Public Law 88-164 and 'Christmas in Purgatory,' 1961-66

    From 1961 to 1966, a presidential panel, a 1963 construction law and a hidden-camera photo essay made institutions a national issue. Kennedy's panel counted more than 200,000 people in institutions; Public Law 88-164 paid for research centers and clinics; and Christmas in Purgatory showed the back wards the money had not reached.

  7. Part 7 ·

    Pennhurst, 1908-1987: life inside and the move to group homes

    Pennhurst held more than 10,500 Pennsylvanians before closing in 1987, and a federal study found people who moved to small homes did better. A 1977 court ruling documented restraint, seclusion and lost skills on understaffed wards; the 1985 Pennhurst Longitudinal Study then followed 1,154 residents into three-person community homes.

  8. Part 8 ·

    Willowbrook, 1972-1993: from exposé to lifelong rights

    A 1972 lawsuit over New York's Willowbrook State School led to a 1975 consent judgment, a 1987 closing and rights that last for residents' lives. Judge Orrin G. Judd's findings on staffing, turnover and harm still read like a guide to what keeps people safe, and New York providers serving class members still follow the 1993 injunction.