More than 35 years have passed since the investigative reporter Geraldo Rivera's documentary on Willowbrook State School in New York City revealed the gruesome and neglected conditions in which individuals with intellectual and physical disabilities lived. Only recently has an archeological dig at the site located the remains of one of the inhabitants, Disabled-institutionalus (so named for children and adults with intellectual and physical disabilities who lived in large state facilities).
In the 1840s, activist Dorothea Dix lobbied for better living conditions for individuals with varied mental conditions after witnessing the dangerous and unhealthy conditions in which Disabledjailus (individuals with intellectual and physical disabilities who were housed in jails). Over a 40-year period, Dix successfully persuaded the U.S. government to fund the building of 32 state hospitals for the care of these patients.
By the mid-1950s, a drive for deinstitutionalization and outpatient treatment for people with disabilities began in many countries, facilitated by the development of a variety of antipsychotic drugs. Deinstitutionalization efforts reflected a largely international movement to reform the "asylum-based" mental health care system and move toward community delivery care. This movement was based on the belief that these patients would have a higher quality of life if assimilated and treated in their communities rather than in large, undifferentiated, and isolated mental hospitals.
The finding of what may be the last remains of Disabled-institutionalus initiated a great deal of interest among those of us working today with Disabled-integratus (individuals with disabilities who are integrated and a true component of our mid 21st century society). However, it is with total disbelief that we ponder the circumstances in which Disabled-jailus and Disabled-institutionalus individuals existed for years and even decades.
In the United States in 1967, there were more than a quarter of a million Disabled-institionalus individuals with intellectual and developmental disabilities (ID/DD) in state institutions (195,650 persons in state institutions for individuals with ID/DD and almost 34,000 persons housed in psychiatric institutions).1 Decades later, changing social policies, legislation for people with disabilities and class-action legal decisions, which delineated the rights of individuals with intellectual disabilities, have led to deinstitutionalizing (i.e. "mainstreaming," establishment of community oriented group residences and enhanced personal family residential settings) and closure of many state run large facilities. In 1977, children through age 21 years represented 35.8 percent of the 151,100 individuals in large state institutions (with more than 16 residents). By 2010, children through age 21 years represented 4.2 percent of the 31,100 individuals in these facilities; 62.5 percent of whom were males.2 (see Table 1) In 2011, the average daily population of large state facilities was an estimated 29,800. Forty-five states operated an estimated 2,426 of residential housing for people with ID/DD. This decline in population after 1975 is attributed to the passage of P.L. 94-142-The Right to Education for All Handicapped Children Act, now known as IDEA. Once families had a place for their children to go during the day, the demand for institutional placement dropped precipitously.
UNEARTHING THE TRUTH: Deinstitutionalization efforts reflected a move toward community delivery care. This movement was based on the belief that these patients would have a higher quality of life if assimilated and treated in their communities rather than in large, undifferentiated, and isolated mental hospitals.
By 2011, 11 jurisdictions had closed all state-operated residential facilities with 16 or more residents for people with ID/DD. (AK, DC, HI, ME, MI, MN, NH, NM, OR, VT, WV). In 2013 Oklahoma closed its last state operated institution. Only three states had 10 or more large state operated ID/DD facilities serving 16 or more residents (New York - 49; Ohio -10; and Texas -13). There were, however, almost 70,000 people in large private institutions some of which are Intermediate Care Facilities and some are licensed by their state under various other funding programs.2
Overall, between 1977 and 2011, the total number of people with ID/DD receiving residential services grew from almost 247,800 to 460,600 (an increase of 85.9%). There were important differences in the pattern of change depending on the setting size and whether the setting was state or non-state operated. The number of people living in settings of 16 people or more declined from almost 207,400 in 1977 to 55,100 in 2011. By contrast the number of people living in state or non-state settings of 1 to 6 people increased from 20,400 to 347,400.2 (See a previous review in EP Magazine for an extended review of these developments.3)
As we delved into the archeological history of our predecessors' work we noted a branch of the main Disabled-institutionalus assemblage, Disabled-backroomus (children and adults with disabilities who were "hidden" in backrooms of homes) as if they were guilty of some "repugnant crime." It just seems irrational to us that parents (and their neighbors) would look upon these family members with disabilities as they were less qualified and therefore subjected to derision and deserving of ridicule.
Yes, there was opposition to the total acceptance of Disabled-integratus. For example: • In the classroom – There were concerns that children with special needs would overwhelm the teaching time in mainstreamed classroom settings. • In playgrounds – Children with special needs were subject to more accidents, which in turn could affect other children. • In the workplace – Adults with disabilities would be unable to function in competitive work settings and also are subject to accidents.
While educational, playtime and work settings may require tailoring to the particular needs of the young and adults with special needs, experience has shown that this can be accomplished. It is not that long ago that most of us can remember when street curb crossings had no drops for those in wheelchairs; that enunciators were not used in elevators to help the blind to locate their floor; that cochlear implants were not available for the individuals with severe hearing limitations; and computer generated vocalization aids were unavailable.
It is in the lifetime of many adults, when the president of the United States could not be seen in a wheelchair – it would have appeared that he was too weak to lead the country in the time of a world war. But times have changed. Individuals with disabilities appear in the movies, in our malls, take vacations to any and all locations by every means of conveyance, perform in athletic competitive events beyond the abilities of many individuals without disabilities, and function in any number of employment positions. In essence, we've learned by experience that individuals with disabilities can and do carry on their life up to the limit of their abilities.
Disabled-integratus is not an "endangered species." Despite continuing advances in knowledge, preventive and service abilities, as well as increasing numbers of trained providers in the many components of medical and social services, the reality is that incalculable numbers of children and adults (particularly older adults in their 80s, 90s and beyond) will be confronted with developmental and acquired disabilities.
• Generations of children will mature in school and play settings with their Disabled-integratus contemporaries,
• Generations of adults will experience increased contact with Disabled-integratus children and adults in malls, restaurants, on vacations, work settings and view them in the movies, and,
• Memories of the world of Disabled-jailus, Disabled-institutionalus, and Disabled-backroomus will fade from societal recollection — Disabled-integratus may advance to a new species, Capableintegratus!
ABOUT THE AUTHORS: H. Barry Waldman, DDS, MPH, PhD - Distinguished Teaching Professor, Department of General Dentistry at Stony Brook University, NY; E-mail: firstname.lastname@example.org Steven P. Perlman, DDS, MScD, DHL (Hon) is Global Clinical Director, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine. Rick Rader, MD is Editor in Chief of Exceptional Parent (EP) Magazine.
1. Anderson LI, Lakin C, Mangan TW, et al. State institutions: thirty years of depopulation and closure. Mental Retardation 1998;36:431-443. 2. Larson S, Salmi P, Smith D, et al. Residential services for persons with intellectual and developmental disabilities: status and trends through fiscal year 2011. Available from: rtc.umn.edu/risp/docs/risp2011.pdf Accessed June 28, 2016. 3. Waldman HB, Eidelman S, Compton K, Perlman SP. Residential settings for children and adults with ID/DD. EP Magazine, 2014;44(4):16-19.