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Community & Disability: DeInstitutionalization

By Julie Ann Racino

instutionalizationIn political science, the term de-institutionalization is defined as “the downsizing and closure of government-run facilities for persons with ‘mental’ disabilities” and the “reallocation of some funds toward supports and services for community living options” (Prince, 2002). ‘Mental’ disability is considered an outdated term, though used worldwide and relatively accurate. The current languages are intellectual and developmental disabilities (replacing the older term mental retardation), psychiatric disabilities in mental health or recovery (“behavioral”), and sometimes, cognitive disabilities near traumatic brain injuries and Alzheimer’s or dementia. Related to nursing homes, the “target populations” may involve the emancipation of people with physical disabilities.

De-institutionalization has diverse histories, including by a categorical service system. The early exposes regarded facilities for people with intellectual and developmental disabilities in the US (Blatt & Kaplan, 1974; Taylor, 1995) and deep concern among the British people on their ability to learn and grow (Mittler, 1979).

The hallmark of the psychiatric systems and de-institutionalization in contemporary history is the 1999 Olmstead Supreme Court decision (See, Donovan, 2013). This decision marked the operationalization of the concept of the “most integrated setting” (Consortium of Citizens with Disabilities, 2012) versus the older concepts based on restrictions termed the least restrictive environment (LRE).

[For service system critiques, see Taylor 1988; Taylor 2004 based on Taylor, Racino, Knoll & Lutfiyya 1987, a national research study. For evidence-based community services practices and long term service categories, see Racino 2012].

By the 2000s, K.C. Lakin & Roger Stancliffe (2007) identified four major trends in intellectual and developmental disabilities: Decreasing use of institutions and increased use of housing; decreasing size among community settings; increasing numbers of people who live in homes they own or rent; and decreasing out-of-home placements of youth and children.

 Deinstitutionalization in the Nordic Countries, the United Kingdom, USA, New Zealand, and Australia

In 2005, Dr. Rannveig Traustadottir of the University of Iceland, a Syracuse University School of Education graduate, and expert in disability and gender,

co-edited an international text on the status of deinstitutionalization (Johnson & Traustadottir, 2005 with Taylor of the USA; Cambridge  of the UK; Bigby of Australia; Tossebro of Norway; O’Brien of New Zealand; Bjarnason of Iceland; Allen & Spina of the USA; and Tideman of Sweden, among others).

The defining concept in the era beginning with the institutional exposes (Blatt & Kaplan, 1974; Taylor, Blatt & Braddock, 1999) to the steady closure of institutions through the subsequent decades, deinstitutionalization was marked by: the transfer of funds into the community, by the development of community homes, work and recreation, by the development of categorical service systems, by new community services and funding categories (LTTS) and by the movement toward community and social acceptance, among others (Racino, 2012, forthcoming, 2013).

Waves of progress defined in the community in the US were the lawsuit and judicial periods, the advocacy by parents and subsequently self advocates, and the professionalization of the community movement (Essays in honor of Gunnar Dybwad, edited by the late Henry J. Bersani, Jr., 2000, also with Syracuse University graduate Canadian Dr. Zana Marie Lutfiyya). Of notability in this period in the above book were the “emblem of the group home”, the first integrated generation, the stalling of the institutional closures, the multi-decade life history accounts, and the new dignity and homes in the community (Johnson & Traustadottir, 2005).

The early history of deinstitutionalization prior to the 1970s period in the US has been largely well documented, including in the oral and archival projects on disability history:

  • The development of the asylums in the US, including for “deaf education” beginning as early as 1817 (Disability History Project 2013; Ferguson 2009);
  • The strengthening of the institutional model (e.g., relationship to testing and eugenics movement, Smith & Wehmeyer 2012);
  • The phenomenon of transinstitutionalization (Warren 1981), including the growth in the prison populations in the US (Anderson 2010);
  • New rights restrictions in the community (e.g., community treatment orders, Brophy & Ring 2004), and
  • The release of psychiatric patients, sometimes to the street, as new medications (“psychotropics”; Cornell University Medical School Library, Racino 1970-1975) came into usage.

[For a new perspective on these institutions and their history, see, Taylor, S.J. (2009).  Acts of Conscience: World War II, mental institutions, and religious objectors. [Critical Disabilities Studies. Syracuse, NY: Syracuse University Press. Affirmed, Racino, 2013]

  “Community” Professions (e.g., Psychiatric Rehabilitation), Community Support and Services, and “User-Directed” Approaches

Psychiatric rehabilitation and community support (mental health administration; e.g., psychosocial providers, now community and behavioral services), from the period of the 1970s to 2000s, has held a primary role in education of workers (Anthony & Blanch, 1989; Anthony et al, 2002; Carling, 1995; Racino, 2012, forthcoming, 2013). Survivors themselves developed services early on (e.g., the late Judi Chamberlin, worldwide known for On my own, 1978), such as advocacy and drop in centers (e.g., New York’s the late Howie the Harp, 2012), including recommending user-directed personal assistance services (Racino & Litvak, 1999). Currently, with the retirement of Dr. William Anthony, the field itself is in flux with 13 large providers claming founding ownership (e.g., New York’s renowned Fountain House, and Chicago’s Threshold) of the now 2013 named “Psychiatric Rehabilitation Association”.  New certificates (in 2004) were begun for children without the academic, university programs in place (i.e., rehabilitation is an adult degree program in the university sector) or review of critical services such as family support (and respite).  [See, Racino, 2013 forthcoming]

Dr. David Braddock, deinstitutionalization and university sector leader, has indicated that the institutional population (16 plus size) in intellectual and developmental disabilities has dropped from 151,324 persons in 1994 to 84,432 in 2011 (Braddock, 2013a). Of the persons served by the state systems, directly or indirectly, 77 percent are now in homes of 6 persons or smaller, of which 58 percent are supported living and 38 percent in a variety of group homes, host homes, foster care and apartments (Braddock, 2013b).

However, the field itself also has had scathing reviews, including turning the highly valued and promoted programs from family support and “community day supports” into cash cow and feeder programs (Dr. Paul J. Castellani of New York’s 1980s family support development, Rockefeller Public Policy Institute, 2005).

While community options, groups disagree on rigid, sheltered work programs, for example, sub-minimum wages as noted by the National Council on Disability  in 2012. There has been a growth in community day “treatment” programs (Racino, 2013) and institutional facilities such as expensive intermediate care facilities (American Association of Retired Persons, 2012) among others.

 Historic Institutional Closures and Community Systems Development

Large private and public institutional closures (Braddock, et al, 1990; Lakin, 2010) have been a primary target for decades with the first “public institution free” state of New Hampshire (Racino, 1999, Smith and Lakin, 1999). In 2010, People First of New Hampshire continued to call for the closing of its two private residential institutions that were operated by community neighbor Easter Seals (Rehabilitation Act of 1973 and hiring people with disabilities, Onondaga County, New York).

The state of New Hampshire, a relatively small state in New England, has a well-developed community system which was court-ordered and supervised (Racino, 2002). The second such state closure to “public-institution free” with comprehensive community services was in the state of Vermont under the leadership of Chas Moseley, now national director (Shoultz et al, 1999). The Center on Human Policy, directed by Steven J. Taylor, reported that the District of Columbia, Alaska, Hawaii, Maine, New Mexico, Rhode Island, Vermont and West Virginia had closed their public institutions by 2004 with community support development (Shoultz, Walker, Taylor, & Larson, 2005; Prouty, Smith & Lakin, 2004) [Racino, 2011].

Most recently, instead of deinstitutionalization, a newer focus has been ADAPT’s long term outcry on the nursing home industry in the US. See the 2003 MiCassa legislative initiative to support system of community home care and attendant services in the US. The University of Montana, in partnership with the federal government, and ILCs (independent living centers) in the US have focused on emancipation projects at nursing homes (Seekins et al, 2008). These projects have had considerable success and mark an important step in re-channeling the Medicaid nursing facility funds (the bulk of “community” funds for elders) back into other community options (See also AARP 2012; Olson 2010; Racino 2012, forthcoming, 2013; Racino & Heumann 1992).

 

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Excerpted from  Racino, J. (2012, forthcoming 2013). Public Administration and Disability: Community Services Ddministration in the US. NY, NY: Francis and Taylor, CRC Press.

This article is part of a limited series that PA TIMES will feature on Communities & Disability. To read the first article, click the link below:

From Facilities to Homes: The Rise of Individualized Funding

Contact: Community and Policy Studies, 208 Henry Street, Rome, New York 13440-6506 (315-533-6592). Racino can be reached at [email protected]

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