Willowbrook State School
Alexis Hampton (Holman)
Lindenwood University
The Behavioral Analysis Certification Board (BACB) holds future and practicing BCBAs and BCaBAs to an ethical standard. Revised as recently as 2017 the BACB’s Professional and Ethical Compliance Code for Behavior Analysts is always improving to better serve our community. The BACB’s ethical code was established to better protect and serve individuals who receive ABA services. One of the leading populations in which ABA services is individuals and their families with developmental disabilities. Oftentimes these families and individuals not only need behavioral support, but protection and advocacy. The BACB requires services to be conducted with an ethical compass; however, this has not always been the case. Many fields of practice that service individuals and families with developmental, intellectual, physical and emotional disabilities were not always held to an ethics code. For example, Willowbrook state school serviced and housed individuals with developmental disabilities beginning in 1947. This New York residential facility is remembered for its unethical practice and their failures to protect their residents. Willowbrook is now synonymous for social injustice, moral abhorrence, and the glaring failures of the state psychiatric system (Reimen, 2017).
The Willowbrook State School opened on October 1947, admitting 20 patients with intellectual and developmental disabilities from upstate institutions in New York. Eight years later Willowbrook reached its full capacity of 4,000 occupants and became overcrowded and understaffed (Reimen, 2017). However, Willowbrook continued to admit new patients, at the institutions peak capacity there were over 6,000 individuals being “serviced” at Willowbrook. The occupants at Willowbrook were victims of neglect, physical and sexual abuse, medical testing and overcrowding (“Willowbrook State School” 2008). Shortly after opening the doors of Willowbrook a hepatitis outbreak took the lives of 60 individuals. Researchers knew that hepatitis was caused by a virus, researchers were unsure on how it spread and if it could be prevented (“Willowbrook State School” 2008). Willowbrook reached out to Saul Krugman and Robert W. McCollum to begin medical research and testing on the occupants at Willowbrook. Krugman knowingly and willingly infected residents of Willowbrook with live hepatitis. Krugman used samples of hepatitis from six infected patients and infected the food of other residents (Reimen, 2017). During these studies there were no safety precautions leading to multiple casualties.
Willowbrook is widely known for Krugman’s unethical hepatitis research; however, other forms of abuse and neglect were also occurring at the same time. Due to overcrowding the staff to resident ratio was 1:50. In addition, 60 percent of the residents were dependent on staff help to use the bathroom and at meal time; however, there were not enough staff to assist these individuals leading to 60 percent of the individuals left without food and sitting in their own waste. In addition, due to overcrowding many residents did not have beds and were left to sleep on the floor. The citizens of New York had little knowledge of what occurred at Willowbrook; however, after two local news reporters covered the unethical practices of Willowbrook there was an outcry for change. In 1983, plans to close Willowbrook were announced to the public. Yet, due to total number of residents still occupied at Willowbrook in 1983 it took four years for the institution to close.
There were many ethical violations that occurred at Willowbrook; however, two stood out the most. The medical testing conducted on the occupants and the overcrowding of Willowbrook led to a breeding ground of other unethical practices. According to the BACB Ethical Compliance Code (2017) 2.01, “Behavior analysts accept as clients only those individuals or entities whose requested services are commensurate with the behavior analysts’ education, training, experience, available resources, and organizational policies.” Willowbrook accepted many residents beyond its scope of practice and resources. Staffing ratio was 1:50 and the total occupants was over 6,000. Furthermore, the BACB Ethical Compliance Code (2017) 7.02(b) states,
“If a client’s legal rights are being violated, or if there is the potential for harm, behavior analysts must take the necessary action to protect the client, including, but not limited to, contacting relevant authorities, following organizational policies, and consulting with appropriate professionals, and documenting their efforts to address the matter.”
Many of the individual’s rights at Willowbrook were violated. For example, residents were often unsupervised due to lack of resources, allowing the occupants to roam the halls alone. In addition, many residents went without food, and bathroom assistance. Furthermore, code 7.02(b) also protects the individuals of Willowbrook from medical testing that poses harm to the participant. Many of the individuals that were infected with live hepatitis later died or lived a painful life. In addition to code 2.01 and 7.02(b), code 5.02 was also violated. The BACB Ethical Compliance Code (2017) 5.02 states, “Behavior analysts take on only a volume of supervisory activity that is commensurate with their ability to be e effective.” The supervisors of Willowbrook admitted more occupants than the institution could hold and were unable to staff the residents appropriately. Many residents needed 1:1 care and assistance but were grouped in a ratio of 1:50. In addition, many other compliance codes were violated at the Willowbrook State School during its time of occupancy. For example, the BACB Compliance Code 9.03 states the need for informed consent; however, residents and their families were not given the opportunity to deny or consent to any of the “services” provided at Willowbrook. Furthermore, one can conclude that all basic human rights were violated.
As stated previously, many basic human rights and BACB Compliance Codes were violated at Willowbrook. However, the public outcry for change in New York led to change in policy and advocacy for individuals with developmental disabilities. We have learned in class that the case studies examined in our groups helped write and improve many ethics code, including the BACB Compliance Code. Although difficult to research, read and report on the unethical practices of Willowbrook aided change in policy for individuals with developmental disabilities. I have learned from Willowbrook, as well as the other case studies presented in class, how to become a better, ethical BCBA. In addition, researching Willowbrook has also facilitated my growth and understanding for the BACB Compliance Code which will aid me in my future practice. In conclusion, without the unethical practices we would not understand what is ethical and morally sound. Society must take case studies like Willowbrook as a learning experience on how to better serve individuals and their families with developmental disabilities.