Historically institutions were supposed to be a place for the feeble minded and the forgotten. A place that was told to parents by medical professionals that the disabled child she bore was not worth being an active part of the family dynamic, and that they’re better off placing their child in an institution because their child would bring shame and guilt to the family.

Going through the process of researching this paper and reading the entire lecture, I tried to find a reason for why physicians would advise a parent to cut all ties from their disabled child. The only answer that I can come up with is this was the mentality of times. As a society we look at how we progress through innovation technology, and medicine. Society forgets about the human spirit. As the bible says “Am I not my brother’s keeper?” When the institutions were first operated by doctors and nurses, I’m sure that the intentions of the staff were to provide the best care for their patients, but as history tells and shows us, this was not to be.

According to Shapiro, J.P. (1997) the earliest facility for the sick and disabled was Marine Hospital Service in 1728. This facility provided long term care for sailors and later changed into the Public Health Services, and later in 1922 the hospitals were then changed into Veterans Administration. Society felt a sense of gratitude to the men who became disabled after fighting in the wars and this inspired many changes in disability programs in the United States (p. 59). Shapiro, J.P. (1997) also states during the early nineteenth century there were laws referred to Elizabeth Laws that were put into place for the poor and the physically and mentally ill facilities that were almshouses. As the industrial population grew so did these homes. In the 1840’s, Dorothea Dix, a Boston school teacher led a movement for the states to take control over the almshouses. People who were placed in these almshouses were placed with disabled adults and children with nondisabled, criminals and people with retardation, epilepsy, and mental illnesses were all thrown together. Dorothea Dix found people with disabilities in cages, closets, cellars, chained, naked beaten with rods (p. 59). Because of Dix’s advocacy, states took over and built specialized institutions for the mentally ill, criminals, and the disabled. Dix urged Congress in 1854 to provide federal funding for separate facilities for institutions such as the deaf, dumb and blind. Shapiro, J.P. (1997) claims President Franklin Pierce vetoed the measure stating “that the care of the disabled is not a federal responsibility” (p. 60). Dorothea Dix was definitely a woman ahead of her time, but thank God she was an advocate for change and she underscored the meaning of helping the helpless and being the voice of change for the disability community. Dorothea Dix is a woman who exposed the naked truth of how people were brutally treated in the almshouses, and was willing to go against men who were the policy makers at this time in history and encouraged them to change the funding practice. President Franklin did not accept congress request. He failed to understand how federal funding was imperative by allowing his views on the federal funding provided less protection for the disabled in the institutional setting.

In the Northern States, the National Home for the disabled Union soldiers was established in 1866. Shapiro, J.P. (1997) addressed the rise in disabled soldiers returning from civil war wounded. The institutions need to rehabilitate the soldiers and the financial demands were too high for charity establishments. American reformers began to experiment with the institutions and were falling apart by the 1850’s. This was the result from the added demands of the Civil War. Because of the lack of accountability from the Administrations who were running the institutions, these places became a place of neglect, isolation, and abuse (p. 61). Darwinism and the eugenics movement was a popular theory during this time in history. The issues are people with disabilities even worth having a place in society (p. 61). Society was not willing to address how do we take care of our vulnerable neighbors even though they were willing to give up their lives? There was a real unfortunate possibility of losing an arm or leg in the process. This is an argument on the basis that this was the mentality of the times. Some members of society were just not educated enough, so they are given a free pass on not recognizing that we are all made in God’s image and all people are deserving of compassion whether they are poor rich, disabled, and not disabled. Darwinism was a popular theory at this time in history. A life was and is today in some circles a life has a value of how much it’s worth. During this time in history, we can underscore multiple theories on why history failed to provide an umbrella of protection for the disability community.

The conditions of how the institutions were operated resulted in lack of funding. According to Blatt, Kaplan, & Sarason (1974), these problems were largely the result of inadequate budgets, inferior facilities, and untrained personal and haphazard planning (p. 1). The book Christmas in Purgatory shows black and white pictures of individuals who were in institutions. This book provides a graph detailed account of what it was like for a person with an intellectual disability. The authors describe an overwhelming stench and a place of despair a place of no hope. Looking at the photos in this depressing book allows the person to visualize an environment of depression, isolation and segregation. This is a place with no family and no common socialization with family and peers. As described in by Blatt et al. (1974), the institutions are a place to warehouse the disabled. Cribs are lined up uniformly side by side for sleeping babies and toddlers. They are often just lying there without any interaction with adults. Other rooms such as a day room are described as play room for young children. They sat on the floor rocking with no toys to play with and any human contact, but adult staff standing by. The same situation can be seen in the documentary Willow Brooke by Haroldo Rivera. This documentary shows reporter Haroldo Rivera discussing the deplorable conditions at Willow Brooke. The reporter shows with his camera man filming patients eating with their hands, sitting on the floor naked with no support from any of the staff members at the institution. Willow Brooke was the catalyst for change in how people with intellectual disability are placed in supported living communities.

According to Shapiro, J.P. (1997), in 1971, advocates fought for the reform of institutions and won under the joint state and federal Medicaid program. As a result, existing institutions are to some degree resemble homes. Rooms have televisions and sleeping quarters are limited to an appropriate number of people. There is also a requirement of daily activities such as a working program or activities that are appropriate for each individual (p.161).

The closing of institutions came about with the focus of social model rather than a medical model. Having individuals live in community supportive living was and still today is advocated in the disability community. According to Shapiro (1997), the concept of having people with disabilities live in communities and work in communities with nondisabled neighbors is the social model (p.162).

Jasper, M.C. (2008) claims that according to the federal government, the Civil Rights of Institution Persons Act 1997 was authorized to have the U.S Attorney General investigate institutions and other facilities such as jails and juvenile correction facilities. This agency can also initiate civil law suits if there is reasonable cause of abuse or harm to the individuals who are placed in these facilities (p.58).

The federal government has provided protection for people who are placed in institutions, but there have been supported arguments that support institutions verses community supported living. On the positive note for supportive living, the cost is less expensive than running a large building that houses people with disabilities. Relationships are formed when a person lives in a supportive living situation. There is wider access to social activities, and their nondisabled neighbors learn about tolerance and diversity within their community. The negative argument stems from staff turn around. This can be the result from lack of support for paid staff and lack of staff education on a regular basis. According to Mansell, J. (2006), the lack of staff moral comes from lack of organization from the administrative staff. Dealing with challenging behaviors and how they are managed are a reality of daily living for people with disabilities and how to cope and manage these behaviors can be resolved (p.72). This can be compensated with funding flexibility to offer different options for different people in different situations rather than one size fits all concepts which can bring everyone in crisis together (p.72). On the argument for supporting institutions is that some professionals believe there are individuals who are highly impacted with their disability that having the option for institutions is a better fit for them. However, studies show that these individuals often experience poorer outcomes than people who are more independent (p.69).

I have a friend who has an adult child who is highly impacted with his disability. My friend utilizes Eastern Washington State Mental Institution for respite, and she has expressed to me that she would be devastated if the institution was ever shut down. The ARC of Washington state has been advocating for this facility to be closed down. This facility also houses the criminally insane and is segregated from the rest of the population.

On June 22, 1999 in Olmsteady, L.C 119 S.Ct. 2176 (1999), the U.S Supreme Court decided 6-3 that confining disabled persons in state institutions for no medical reason is a form of discrimination that violates Title II of the Americans Disability Act of 1990 (ADA), 42 U.S.C section 12132 (1994). McCants, W.D (1999) claims the court held that placing a patient in community settings should occur when a state’s treatment professionals have decided that such placement is appropriate given the patient’s treatment needs; the patient does not oppose the transfer from institutional care to a less restrictive setting; and the state can reasonably accommodate the transfer in light of its resources and the needs of other disabled persons in the state (p.1) The background of the Olmstead case involves Lois Curtis and Elaine Wilson, both women who are mildly mentally retarded suffering from accompanying psychological disorders. In May of 1992, Lois Curtis was voluntarily admitted to Georgia Regional Hospital where she was confined for treatment in a psychiatric unit. By May of 1993, Lois Curtis’s treatment team at Georgia Regional Hospital agreed that her needs could be met appropriately in a state-supported community based program. Nevertheless, Lois Curtis remained institutionalized until February 1996 and then the state finally placed her in a community based treatment program.

Elaine Wilson was voluntarily admitted to Georgia Regional Hospital in February 1995. She also had been confined for treatment in a psychiatric unit. McCants, W.D. (1999) claims that one month later, Georgia Regional Hospital attempted to place Elaine Wilson in a homeless shelter, but ceased in its efforts when her attorney filed an administrative complaint. Even though Elaine Wilson psychiatrist had concluded in 1996 that she could be treated appropriately in a community based setting, Elaine Wilson remained institutionalized well into 1997 (p.2).

According to McCants, W.D (1999), in May of 1995, Lois Curtis filed suit in U.S. district court, challenging her continued confinement in a segregated environment. Lois Curtis alleged that Georgia’s failure to place her in a community based program, once her psychiatric treatment team had determined that such placement was appropriate violated Title II of the ADA. Ms. Curtis requested that the state place her in a community care residential program, with ultimate goal of integrating her into the mainstream of society. Elaine Wilson joined the case and filed the same request (p. 2). The district court ruled for Ms. Curtis and Ms. Wilson, rejecting the state’s argument that inadequate funding, and not discrimination against Ms. Curtis and Ms. Wilson “by reason of” their disabilities, accounted for their detention at Georgia Regional Hospital. Under Title II, the court concluded, “unnecessary institutional segregation of the disabled constitutes discrimination per se, which cannot be justified by lack of funding.” The court also ruled rejecting Georgia’s argument that requiring immediate transfers in cases of this type would according to McCant, W.D (1999), “fundamentally alter” the states activity, and that the state was already using all available funds to serve other disabled persons” (p. 2). This case went as far as the U.S Supreme court with Justice Ginsburg’s majority opinion held that the obligation of states to care for the disabled in community-based settings is limited, to some degree by available resources. When evaluating the extent of these resources, courts must look not only at the cost of providing community- based care, but also at the range of services a state provides to others with mental disabilities. According to McCants, W.D (1999), “a state has an obligation to distribute its limited resources fairly.” (p. 3)

Ginsburg opinion shows how she reflected the principles of the disability rights movement. Her opinion contributions to the legal acceptance of the disability rights movement promise to aid significantly in the achievement of equal citizenship for people with disabilities in this country.

History has taught us that education, compassion, family and community involvement is important for promoting acceptance with people with disability. Institutions were put in place to help people with disabilities, but staffs were poorly trained. Families were not involved in the lives of people housed in institutions because medical professionals thought that it was best for both the family and the person with disability to be permanently separated from each other. If it wasn’t for advocates exposing the naked truth, many of the poorly ran institutions would still be in business today.