Testimony Regarding Safety and Quality of Care in Residential Facilities and Programs 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.

We believe that there are at least six systemic areas implicated by the March 13, 2011 New York Times article by Danny Hakim titled “At State-Run Homes, Abuse and Impunity.” The comments below are an overview of the more extensive series of concerns and related recommendations in the accompanying attachments.

I. OPWDD’s Incident Review and Reporting System Must Be Made More Robust. An incident reporting and review system is a management tool designed to ensure institutional accountability for events or actions which may, or do, have a harmful effect on people receiving services from OPWDD and to provide a basis for appropriate corrective, preventative, or disciplinary action to reduce their frequency.

A. Correlations and Trends Analysis.

Issues: There is no consistency or assurance that DDSOs perform adequate trend analyses, much less collect annual trend analyses from service providers within their service areas. For example, in efforts to review patterns and practices related to incidents, there is no trends analyses or determination of the correlation between staff familiarity (with persons served) and the number of incidents; there is no trends analyses or determination of the correlation between number of incidents on shifts with more staff and shifts with less staff; there is no trends analyses or determination of the correlation between number of incidents and the numbers of staff on overtime; there is no trends analyses or determination of the correlation between the number of incidents in multiple-story houses and single-story houses; there is no trend analysis on frequency of injuries in any given service setting.

Recommendations: OPWDD must engage in meaningful trend identification and analysis. OPWDD must develop processes for the identification of trends in the circumstances or nature of reported incidents across facilities and regional offices and must generate recommendations for systemic action to prevent the recurrence of certain types of incidents. OPWDD must monitor the implementation of the approved recommendations for corrective or preventative action or to evaluate effectiveness of such action to reduce the recurrence of incidents. OPWDD must follow up on anomalies and/or systemic action to prevent the recurrence of certain types of incidents identified by such analysis. B. More Rigorous Practices and Procedures Must Be Developed. Issues: Serious incidents and allegations of abuse are not investigated in a thorough and timely manner. The OPWDD Internal Affairs Office is not addressing the need for investigations m terms of timeliness and volume of investigations. There is too often a lengthy delay of time before the investigator’s report goes to the Incident Review Committee. Investigations are not always complete and do not always satisfactorily meet all of the elements defined to ensure a complete investigation. Investigations sometimes use poor investigative practices, e.g., accepting non-specific statements in lieu of direct interviews.

Recommendations: additional forensic support must be provided to incident investigators; heightened staff training must be provided with respect both to incident reporting and investigation, including their role in the preservation of evidence; whistleblower protections must be enhanced; there must be more robust and direct oversight of the voluntary provider sector; there must be sanctions for those who knowingly fail to report incidents and the consistent enforcement thereof; and investigation protocols must be developed to secure timesensitive information.

C. Voluntary Provider Sector.

Issues: There is substantial disincentive to voluntary agencies to fully report and therefore be required to follow-up incidents. There is a lack of oversight by the State to ensure that DDSOs collect annual trend analysis from voluntary agencies within their service area. There are inadequate controls to ensure that voluntary agencies report cases as required and that all such cases are brought to timely and effective closure through complete investigation and follow-up actions. Even when OMRDD Internal Affairs has a finding of abuse, there is no mechanism to force the voluntary to take a recommended action, i.e., dismissal of a staff person. Recommendations: OMRDD ensure that voluntary agencies conduct timely investigations of all serious reportable incidents and allegations of abuse. OPWDD must ensure that the DDSOs adequately monitor the actions taken by volunteers to investigate incidents, as well as establish written procedures describing how staff are to monitor the voluntary providers and establish a system for determining when the DDSOs should conduct their own investigations. OPWDD must ensure that the DDSOs have written procedures describing how staff are to record the incidents reported by the voluntaries and to ensure that information about incidents in quarterly reports submitted to OPWDD’s Central Office is accurate and complete.

D. Staff Repeatedly Accused of Abuse or Neglect

Issue: As the system currently functions, neither the OPWDD Incident Reporting Form 147, nor IRMA, OPWDD’s automated incident reporting system, is capable of identifying staff repeatedly accused of abuse or neglect, nor the supervisors under whose watch such incidents repeatedly occur.

Recommendations: The OPWDD Incident Reporting Form 147s must be changed so that they indicate the name of the alleged perpetrator as well as the immediate supervisor. IRMA must track staff repeatedly accused of abuse or neglect as well as the supervisors under whose watch such incidents occur. IRMA has great potential to generate important information that OPWDD needs to keep people safe.

II. OPWDD’s QM/QA system must be made more robust.

A quality management/quality assurance system permits OPWDD to monitor and ensure quality of care across all aspects of the service delivery system. A quality management/quality assurance system will include a risk management function and is responsible to ensure that OPWDD continues to provide effective, high quality, safe services that meet the needs of New Yorkers with developmental disabilities, and as well, will identify opportunities where improvements to services can be made

Issues: OPWDD has made a disturbing and counter-productive move towards reliance on self-certification by agencies and on an undertaking called National Core Indicators that generates highly subjective indicators as measures of quality. OPWDD has reduced resources available for DQM audits and onsite reviews.

Recommendations: OPWDD must ensure adequate resources for robust DQM audits and onsite reviews of all aspects of OPWDD’s service delivery system – whether residential or through day programming sites. OPWDD must ensure the collection of information related to the adequacy of the provision of the protections, treatments, services, and supports provided by OPWDD as well as the outcomes being achieved by individuals receiving such services. OPWDD must analyze that collected information to identify strengths and weaknesses within the current system OPWDD must identify and monitor implementation of corrective and preventative actions to address identified issues and ensure effective resolution of underlying problems. Such actions obviously include, among other things, as noted above appropriate tracking and trending of incident data to ensure that incidents are properly investigated as well as appropriate corrective actions to be identified and implemented in response to both individual incidents and problematic trends.

III. OPWDD’s Workforce Issues Must be Addressed. Issues: disciplinary cases are not pursued in a timely manner. Adequate resources are

not dedicated to effectuating the disciplinary process set forth under the collective bargaining process. Employees are allowed to resign from their positions in OPWDD rather than being terminated, suspended or demoted. There is no mechanism in place that guarantees that the employees accused of abuse or neglect, who resign their positions, are never employed in a similar position elsewhere. Employees accused of abuse or neglect are not properly disciplined but are moved to other service settings and permitted to continue working with people with developmental disabilities.

Recommendations: OPWDD must ensure incident accountability within the workforce. OPWDD must dedicate all resources necessary to effectuate the disciplinary process and to ensure the safety of the population served by OPWDD — whether directly or indirectly through voluntary agencies. There is a need to prevent employees accused of client abuse from resigning without some mechanism in place, consonant with the requirements of due process, that guarantees that those employees are never employed in a similar position elsewhere. With respect to the hiring process as it relates to direct care staff, OPWDD must incorporate into the hiring process – or during the period of probationary employment – a methodology to assess whether the direct care staff new hire is able to cope with the rigors and stresses of the job. supervisory staff all along the chain of command must be both supported and then assessed on the extent to which they (i) create an atmosphere in which abuse and neglect are not tolerated, and (ii) manage personnel discipline matters effectively.

IV. OPWDD’s Engagement with the Criminal Justice System Must Be Enhanced. Issues: There is ongoing failure to notify law enforcement authorities of possible crimes as required by Mental Hygiene Law. And, even where there has been a referral to law enforcement, all too often, law enforcement officials do a cursory review and do not take actions in response to reported abuse and neglect.

Recommendations: OPWDD must (i) insure referrals of those staff who have been alleged to have committed crimes to the criminal justice system for prosecution, and (ii) partner with the criminal justice system to overcome law enforcement bias and lack of knowledge regarding investigation and/or prosecutions of crimes committed against incapacitated individuals ranging from difficulty of proof to devaluation of the crime victim.

V. OPWDD’s Recently Restructured MSC System Must Be Recalibrated.

Medicaid Service Coordination (MSC) is a program designed to help people with developmental disabilities live independent and productive lives in the community. Medicaid Service Coordinators (“MSCs”) provide assistance and advocacy in many areas but one of the primary roles of MSCs is to protect the rights of people with developmental disabilities, which includes being aware of the environment in which the person is living. OPWDD recently completely revamped its MSC system, increasing MSC caseloads substantially and, through a variety of other changes, effectively reducing the numbers of individuals eligible to receive MSC services.

Issues: The protective oversight role of the MSC has been substantially diminished. Reductions in the MSC quality and level of service and availability make it even more difficult for OPWDD’s system to provide appropriate oversight/advocacy for those people served by OPWDD.

Recommendation: OPWDD should immediately rescind the changes to the MSC service system. OPWDD should make MSC services available to all New Yorkers with developmental disabilities. OPWDD should ensure that caseload sizes are appropriate to permit MSCs to perform all assistance, advocacy and protective functions.

VI. OPWDD’s Overnight Staffing Practices in Community Residential Settlings Must Be Altered.

Issue: OPWDD currently permits group home settings to operate with either 1 staff alone or 2 staff – 1 asleep/1 awake – on overnight work shifts without any significant oversight/supervision. In addition to the risks presented to the residents, there are serious implications to this type of overnight staffing pattern with respect to incident reporting, with a high risk of incidents going unreported.

Recommendation: OPWDD cannot allowing any group home settings to operate with either 1 staff alone or 2 staff-1 asleep/1 awake – on the overnight at all, or at the very least without some degree of significant oversight/supervision of staff in those settings.

* * * * *

We note that meaningful reform will require a sustained from both OPWDD administrators, as well as from state officials and elected representatives, like you and your committee members, who are responsible for ensuring that our public facilities operate within the law. What had been happening in OPWDD’s service system over the past several years of deep budgetary cuts has denied New Yorkers most in need of care and support their basic rights by the very institutions entrusted to protect them. While these oversight hearings have been motivated by reports of a few grossly inhumane and criminal acts of abuse and neglect, you cannot lose sight of the daily indignities that are routinely visited on people with disabilities who must rely on the delivery of essential social services in a system that has not dedicated adequate funding to the delivery of those services. And that adequately funded system must include a robust, and functionally independent, system of oversight.

Jonathan Carey died on February 17, 2007. The circumstances of Mr. Carey’s death were extensively covered by The Times Union, Albany’s paper of record.5 The New York State Office of the Inspector General (“OIG”) conducted an extensive audit and issued a fairly significant report on June 11, 2008, making 20 recommendations for change in state government and criticizing both the New York State Commission on Quality of Care and Advocacy for Persons with Disabilities (CQC) and OPWDD, then called the New York State Office of Mental Retardation and Developmental Disabilities (OMRDD) for neglecting their duties. The 244-page report examined the response of New York State agencies to allegations of abuse of Jonathan Carey in 2004. It revealed deficiencies in state oversight of Jonathan’s care, particularly by the CQC. It also faulted both CQC and OMRDD for providing misleading or inadequate information to the Governor’s office and Jonathan Carey’s parents. It also recommended a review of the state’s Social Services Law related to abuse in institutional settings.6 The Legislature’s only response, at the time, was to enact the so-called “Jonathan’s Law,” making certain amendments to New York State Mental Hygiene Law.7

On March 21, 2009, a fire at a Hamilton County group home in Wells, New York killed four residents, two men and two women. The home was under the auspices of the Sunmount Developmental Disabilities Services Office in Tupper Lake, a division of OPWDD. Five of the nine residents of the Wells group home were plaintiffs in the Willowbrook case. Two of the four residents of the Wells group home who died were former Willowbrook residents and another Willowbrook class member was severely injured and flown by med flight helicopter to the hospital. Only after the deaths was it discovered that fire drill records at the home were found to have been falsified – fire drills had never been performed at this house by the staff on the overnight shifts and that failure, among others, led to the residents’ deaths.8

The New York State Office of Fire Prevention and Control9, the New York State Police10 and a Hamilton County grand jury11 have all issued extensive reports describing a variety of lapses in safety training and building standards that contributed to four deaths during a fire at a group home in the Adirondacks. In February 2010, an OPWDD-convened a Fire Safety Panel of State and National Experts issued an extensive report and series of recommendations to ensure that the various lapses that led to the tragic fire and deaths could be prevented in future.12 The CQC has yet to issue its investigation report. The fire, and the investigations and reports, have all been extensively covered by the Times Union.13 OPWDD has claimed to have undertaken certain remedial actions in response to the investigatory recommendations. Yet, the Legislature has undertaken no oversight of any of the OPWDD initiatives.

Certainly, when Jonathan Carey died in 2007 and when the tragic fire at the Wells group home occurred in 2009, we hoped that the Legislature would begin taking responsibility for monitoring the abuse and neglect we have been bringing to the attention of public officials and the media. Yet, the Legislature has been woefully derelict in its oversight duties.

We continue to believe that what the Legislature must do now is to maintain vigilance over this situation by ensuring that reform measures are instituted and that those reform measures have all appropriate dedication of resources afforded them. We firmly believe that it is the Legislature’s responsibility to provide meaningful oversight, and we suggest that it do so by holding quarterly hearings to monitor reform efforts currently underway. Without the benefit of the kind of spotlight that these committees and the Legislature can shine, we will never be able to eliminate the kinds of abusive conditions that have once again come to light – this time in the recent New York Times series.

In closing, I want to make clear that my testimony and the accompanying written statement and various other materials I have provided you are not intended as a complete or exhaustive series of recommendations as to the systemic measures we believe OPWDD must undertake in the area of incident review and management. We appreciate the opportunity to express these views before you, and we would welcome the opportunity to elaborate upon our analysis in this area, and in the other systemic areas where we believe OPWDD must make significant changes, as the Legislature considers these matters further.

Thank you.

Footnotes:

1 A second story by Mr. Hakim in the New York Times Series “Abused and Used,” titled, “A Disabled Boy’s Death, and a System in Disarray,” was published on June 5, 2011. This article examined circumstances of abuse and neglect occurring in OPWDD-operated institutional settings as opposed to the community-based settings covered in the March article. 2 NYSARC v. Cuomo, 7
2 Civ. 752, 753, is still active and under the supervision of United States District Judge Raymond J. Dearie, United States District Court for the Eastern District of New York.
3 Certainly, Commissioner Courtney Burke has been responsive to our concerns and has solicited our comments in all these areas. I must note, however, that certain significant OPWDD systems – including quality management and Medicaid service coordination – were significantly, and detrimentally, altered during the prior administration when the agency was under the auspices of Diana Jones Ritter and Max Chmura. Based on briefings we have received on recent initiatives in the area of incident management, we believe OPWDD, under Commissioner Burke, is moving towards restoring aspects of those systems.
4 While these materials are “vintage,” unfortunately they are as timely and relevant to the issues at hand today as they were in 1995 and 1996.
5 The entire compendium of Times Union coverage can be accessed at http://web.timesunion.com/specialreports/jonathan/. I would note for the record that until Mr. Hakim’s June 5, 2011 story, the New York Times never covered this tragedy.
6 The OIG report, “A Critical Examination of State Agency Investigations into Allegations of Abuse of Jonathan Carey” can be accessed at http://www.ig.state.ny.us/pdfs/A%20Critical%20Examination%20of%20State%20Agency%20Investigations%20int o%20Allegations%20of%20Abuse%20of%20Jonathan%20Carey.pdf.
7 Jonathan’s Law did not change the OPWDD incident reporting system as it relates to Willowbrook class members; however, it did little, if anything, to make the OPWDD incident reporting system more transparent or more effective.
8 See http://www.nynp.biz/breaking-news/1010-omrdd-investigation-questions-drills-prior-to-wells-fire-.
9 See http://readme.readmedia.com/New-York-Department-of-State-Concludes-Wells-Fire-Investigation/764415. OFPC was realigned into the New York State Department of Homeland Security and the report may no longer be posted on the website. NYCLU can provide a copy of the report to the Committees upon request.
10 We do not have a copy but we have been advised by OPWDD that they received the New York State Police Report.
11 Available at http://www.prevention1st.org/documents/Wells_Fire_GrandJuryReport.pdf.
12 Available at http://www.scribd.com/doc/27026124/Fire-Safety-Report-Final-5, 13 The Times Union coverage was led by reporter Rick Karlin. At least 94 articles ran on the Wells fire.