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Quality of Care in Adult Homes (Willowbrook)

Statement Of Beth Haroules, Staff Attorney At The New York Civil Liberties Union And Plaintiffs’ Counsel In The Willowbrook Case, Before The Assembly Standing Committees On Aging, Health, Mental Health, Mental Retardation And Developmental Disabilities And Oversight, Analysis And Investigation Concering The Quality Of Care In Adult Homes May 10, 2002 My name is Beth Haroules. I am a Staff Attorney at the New York Civil Liberties Union (NYCLU) and one of plaintiffs’ counsel in the Willowbrook case. The NYCLU is the New York affiliate of the American Civil Liberties Union. The NYCLU has long been devoted to the protection and enhancement of those fundamental rights and constitutional values embodied in the Bill of Rights. In the forefront of those efforts has been our defense of the rights of the mentally retarded and developmentally disabled under the Federal Constitution and the New York State Constitution. The NYCLU, with others, commenced the Willowbrook lawsuit in 1972 to correct the inhumane institutional conditions suffered by the residents of the infamous Willowbrook State School. We successfully argued that the United States Constitution guaranteed such individuals the right to due process in the decision to institutionalize them; freedom from abuse and unreasonable restraint within the institution; a clean, sanitary environment; nutritious food; adequate clothing; decent medical care; protection from harm; and appropriate treatment or habilitation to improve their mental condition or to increase their skills. After the Willowbrook Consent Judgment was entered on May 5, 1975, the focus of the litigation to correct inhumane institutional conditions turned to advocacy for the development of community-based services as a means to advance social justice for people with mental retardation and developmental disabilities. The goals at the time were virtually unheard of — deinstitutionalization, normalization and community integration — at home, in the workplace, in the community. Twenty-five years later, such goals have been, to varying degrees, realized for many of the some 5400 Willowbrook class members. And, in fact, for the past quarter century, the Willowbrook entitlements have set the standard for the developmentally disabled in this state and many others. Even so, to assure the State’s continued provision of high quality community residential and habilitative services to the Willowbrook class members, we must monitor our clients’ situations on an almost daily basis. Sadly, New York State has lagged behind in providing comparable community-based services to its citizens with mental illness. There is a growing body of evidence that demonstrates that people with mental illness are not being provided many of the services they need to lead full and productive lives — much less being protected from harm in their own homes. Our experiences over the past years in the Willowbrook case have demonstrated to us that when the State provides services to this type of vulnerable and fragile population, there is a pressing need for the intensive commitment of the State’s resources in several critical areas. Oversight of Adult Care Facilities The State must provide intensive oversight of adult care facilities through surveillance actions and quality control surveys by the Department of Health, the Office of Mental Health and the Commission on Quality of Care. The State must comply with its existing oversight responsibility and must also craft additional surveillance protocols. Such survey information should be used to protect individuals from harm or mistreatment and promote high standards for the delivery of services. Such survey information should also be used to ensure financial accountability and to guard against fraudulent activities. Survey information must be shared amongst the responsible agencies, on a timely basis, and corrective actions and follow-up to implementation of the corrective actions must be required. Survey information must be transparent and must be made public. The State must vigorously pursue enforcement actions against adult home operations that are found to be providing an inadequate or insufficient level of services. Incident and Death Reporting and Investigations Incident reporting and review systems protect individuals from harm or mistreatment and promote high standards for the delivery of services. Incident reporting and review systems are also management tools that ensure institutional accountability for events or actions which may or do have a harmful effect on individuals and that provide a basis for appropriate corrective, preventative, or disciplinary action to reduce the frequency of incidents. By all reports, to date the State has failed to comply with the rudimentary incident reporting and review systems it has already crafted. The incident reporting and review system must be augmented and strengthened. The regulatory scheme must mandate timely review and investigation of incidents. The regulatory scheme must mandate trend identification and analysis and follow-up on any anomalies identified by the analysis. All employees must be trained in incident reporting and investigation; the state must establish systems for monitoring the training provided to its employees and supervising the performance of those employees. Immediate Implementation of Quality of Care Initiatives Various changes must be implemented in adult home settings including appropriate medication management and physical plant maintenance, including ambient room temperatures. Residents must receive high quality health and mental health care, including rehabiliative mental health services and skills training, such as vocational or literacy training to help individuals lead more independent productive lives in the adult home or in the community. In addition, the State must mandate that qualified, trained staff provide services to the residents in adult care facilities and, to that end, implement staff training that will improve the quality and safety of care and services provided to residents of adult homes. Peer Support Services/Consumer Participation Finally, the regulatory scheme must embody the philosophy of individual rights and self-determination that has driven the Willowbrook litigation. DOH, OMH and CQC must focus on the provision of advocacy services by peers and resident advocates, including supporting the development and operation of resident councils, training residents and councils with respect to their rights, assisting residents in negotiating resolution of problems; and providing outreach services to link residents to other services in the community. Too often, reform occurs only in response to scandal or tragedy. The events reported by The New York Times, this year and last, should shock the conscience of New York State and must spearhead meaningful reform. We understand that the Governor and DOH, OMH and CQC have announced so-called “aggressive actions” to protect the 30,000 frail elderly and persons with mental disabilities who are the residents of New York’s adult care facilities. Adequate funding must be provided so that those “aggressive actions” are effective. Article XVII, Section 1 of the New York State Constitution mandates nothing less: “the aid, care and support of the needy are public concerns and shall be provided by the state …” This provision of the New York State Constitution was specifically adopted to protect rights vulnerable in the event of difficult economic circumstances and is not a matter of legislative grace. Indeed, the Legislature is prohibited from “refusing to aid those whom it has classified as needy.” Thank you for the opportunity to testify before you today.

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