Testimony Regarding Safety and Quality of Care in Residential Facilities and Programs for People With Developmental Disabilities
Testimony of the New York Civil Liberties Union before Assembly Standing Committee On Mental Health, Mental Retardation And Developmental Disabilities Assembly Standing Committee On Codes Assembly Standing Committee On Oversight, Analysis, And Investigation regarding Safety and Quality of Care in Residential Facilities and Programs Licensed by the Office for People With Developmental Disabilities. My name is Beth Haroules and I am a Senior Staff Attorney at the New York Civil Liberties Union (“NYCLU”). The NYCLU, the state affiliate of the American Civil Liberties Union, has approximately 48,000 members. The NYCLU is devoted to the protection and enhancement of those fundamental rights and constitutional values embodied in the Bill of Rights of the U.S. Constitution and the Constitution of the State of New York. I would like to thank the Committees on Mental Health, Mental Retardation and Developmental Disabilities, Codes and Oversight, Analysis and Investigation for inviting the NYCLU here today to provide testimony. We note that this joint committee hearing is scheduled as an oversight hearing to address the “safety and quality of care in residential facilities and programs licensed by the Office for People with Developmental Disabilities.” We understand that your committees are responding to the March 13, 2011 New York Times article by Danny Hakim titled "At State-Run Homes, Abuse and Impunity," detailing a variety of significant failings at OPWDD-certified settings.1 As you know, in 1972, the NYCLU, with others, filed a historic civil rights lawsuit to challenge the inhumane institutional conditions suffered by the residents of the infamous Willowbrook State School.2 These rights include protection from harm, a safe, clean and appropriate physical environment, high quality community residential and treatment services in the least restrictive setting and high quality case management and advocacy services. More than 35 years later, the NYCLU and other advocates still actively monitor New York State to ensure that it is complying with its obligations on behalf of the members of the Willowbrook Class. Approximately 3100 of the original 6000+ Willowbrook class members are still alive – the ages of the class member range from early 30’s to late 90’s. The class members reside, in a variety of residential settings, from institutional to independent living situations, and in all parts of New York State; almost two-thirds of the class are located in the downstate region. I have served as lead counsel at the NYCLU on the Willowbrook case since 1994. The observations and recommendations I will make today are culled from my long-term advocacy for systemic reform of several of the components of the OPWDD service delivery system including in particular incident review, quality management and various workforce related issues. The Willowbrook litigation was the catalyst for the development of New York State’s community-based service system; the entitlements afforded the Willowbrook class under all the orders entered in the litigation over the years past have always been intended to, and indeed have for a long time, set the standard for protection and services for all people with developmental disabilities who live in New York State. But over the past several years, we have seen that the protections and services guaranteed (although certainly not always provided) to the Willowbrook class have not been carrying over to the rest of the service system – nor have the lessons learned by OPWDD from the implementation of the Willowbrook Permanent Injunction over the past 14 years been used to inform the improvement of the system as a whole. Rather, where Willowbrook entitlements were seen as conflicting with trends to reduce services or oversight, we have seen over the past several years that Willowbrook class members are simply “carved out” of systemic changes. The Willowbrook class members are entitled, by virtue of the deprivations they suffered during the time they were institutionalized at Willowbrook, to life-long high quality services and protection from harm. We know, however, that they cannot obtain these entitlements in a system whose quality management and service delivery system are being decimated for everyone else. Accordingly, we would urge the Legislature to insist, at the very least, that OPWDD revert to its prior practice of having systemwide changes informed by the perspective of those who participated in transforming the system in response to the need to ensure that what happened at Willowbrook never happens again.3 In connection with the processes set forth in the 1993 Willowbrook Permanent Injunction, we have long urged that OMRDD/OPWDD undertake systemic reforms in the area of protection from harm/incident reporting, investigation and follow up as well as in various other areas including, for example, service coordination/case management, medical/clinical assessments, environmental/physical plant, programming and community inclusion. While there are a variety of materials that we could share with you, we are providing to you the following materials most relevant to the events at hand relating to the incident review and investigatory process, including employee accountability measures:4
- January 26, 1996 comments from Willowbrook plaintiffs' counsel to Commissioner Maul concerning master plans of systemic correction.
- December 7, 1995 Willowbrook Task Force parties’ comments on “OMRDD’s Incident Review Master Plan.”
- November 9, 2010 letter from Willowbrook plaintiffs’ counsel to Governor Patterson outlining incident reports and complaints statewide that reflect systemic deficiencies in the quality of services, including but not limited to appropriate staff and staffing levels; case management; community, residential and treatment services; and community inclusion.