Introduction

The Department of Mental Retardation (DMR) operates and regulates community living arrangements (CLAs), also known as group homes, for persons with mental retardation as one type of residential service available to DMR clients. In March 2002, the Legislative Program Review and Investigations Committee began an investigation into how well the policies and practices of the department and its contracted provider agencies address the safety and physical well-being of DMR clients living in CLAs. The committee investigation was requested by a vote of the Joint Committee on Legislative Management Committee (JCLM) on January 30, 2002. (See Appendix A for the JCLM motion).

The investigation was prompted by a series of articles in the Hartford Courant in December 2001 about deaths of clients in DMR run or funded group homes. The newspaper cited 36 cases as being "linked" to "neglect, staff error, or other questionable circumstances," noting that this number of deaths represented 10 percent of all the deaths in CLAs over a 10-year period. A central question for the program review committee was whether these deaths resulted from systemic weaknesses in the DMR system.

Methods

To address that central question, the committee analyzed the system from various perspectives. Pertinent DMR statutes, regulations, and policies related to residential programs were reviewed. From these, an array of DMR policies and procedures intended to promote the health and safety of DMR clients were identified and examined. The policies and procedures that occur at each step of the client's residential program - from individual client placement and planning, through residential program implementation, to home licensing, and provider contracting - were evaluated to understand the health and safety expectations in place. Next, policies, procedures, and practices triggered by events that could indicate a failure to promote health and safety were reviewed-these involve abuse and neglect allegations and how deaths are reviewed.

Committee staff interviewed a number of private and public group home staff on their practices and met with provider associations. Committee staff also interviewed DMR central office and regional staff in various capacities including administration, budgeting, health services, investigations, human resources and information systems. Committee staff accompanied DMR contract monitors and licensing inspectors on site visits and inspections and observed annual contract review meetings, and regional planning and resource meetings.

Program review staff met with personnel in the Office of Protection and Advocacy and Department of Public Health regarding roles and responsibilities impacting DMR clients. In addition staff attended meetings of mortality review committees at both the regional and state levels.

Staff reviewed the general literature on morbidity and mortality among the developmentally disabled populations, and analyzed national and state death-related data. For Connecticut statistics, staff used the Department of Public Health's death registry, the state's official compilation of death certificate and cause information. Staff obtained limited data on deaths among developmentally disabled populations from California, Massachusetts and several other states participating in a quality improvement project whose death data were compiled but without identifying individual states. Staff also reviewed an April 2002 report conducted by a health statistician under contract with DMR. The report contained analysis and findings related to mortality statistics of DMR clients for a six-year period, from 1996 through 2001.

Committee staff also conducted a detailed file review of 177 randomly selected cases of DMR-client deaths in CLAs in all regions. The cases involved about half of all deaths that occurred in group homes during the 10 years from 1992 to 2001. Data were collected on client demographics, residential placement history, health and behavioral issues, cause of death, and processes followed after death. The same information was gathered for the 36 cases cited in the Hartford Courant news articles.

The committee held a full-day public hearing on DMR group home client health and safety in November 2002, with both invited speakers and the general public providing testimony.

Analysis and Findings in Brief

The investigation used a four-step approach that involved looking at overall death rates in the general population compared to the DMR population, and where possible, Connecticut's DMR death rate compared with other states. The ages, residential placements, causes of deaths and contributing factors were examined for all 1,654 DMR client deaths that occurred between FYs 92-01.

An in-depth file review of randomly selected cases of 177 CLA residents who died in the 10-year period of FYs 92-01, along with an examination of the cases cited in the Hartford Courant, were also conducted. Data collected from that file review were compiled and analyzed. The death analyses showed:

1. in general, there is a higher death rate among the DMR population than in the general population, and DMR clients die at an earlier age;

2. Connecticut's DMR population death rate was similar to other states from which numbers were available;

3. the death rate for DMR clients was highest in skilled nursing facilities, followed by Southbury Training School and the regional centers. CLAs had the fourth highest death rate among the seven residential settings compared;

4. as a whole, the persons in the 177 case sample were a medically involved group; and

5. regarding persons in the Hartford Courant cases, while many had medical issues there was a much higher proportion of deaths due to accidents than in the sample.

In some of the 36 cases cited by the Hartford Courant as well as in some of the cases in the program review case file examination, tragic events occurred that but for a different set of circumstances might not have. For example, two people died because they were left alone in bathtubs when they clearly should not have been. Others choked on food or non-food items that should not have been available to them. In its final analysis, the program review committee did not identify any direct systemic cause related to the deaths, meaning that in almost all the cases, there were systems in place to address the risks to these clients, but for one reason or another were not carried out.

After examining the individual death cases and reviewing the current oversight mechanisms in place at DMR, the program review committee concludes the CLA system is regulated and monitored by many different governmental entities (DMR, Office of Protection and Advocacy for Persons with Disabilities (OPA), Department of Public Health (DPH), and the federal Centers for Medicare and Medicaid Services (CMS)). However, there is a lack of cohesiveness and follow-through resulting from any of these reviews. To be the most effective in sending the message that DMR is as serious about client health and safety as it is regarding other aspects of its responsibilities, there must be assurance and accountability from both DMR and its service providers that: 1) deficiencies found are corrected; 2) health and safety measures are practiced; and 3) when an accident or death happens it is thoroughly and objectively examined. Thus the main thrust of committee findings and recommendations in this report is on enhancing oversight effectiveness in areas including licensing and inspections, abuse/neglect investigations and general oversight coordination.

The committee also found that some of the regulations governing CLA operations, especially in the area of emergency planning, are outdated, and recommends enhancements. The committee further determined DMR lacks a comprehensive system to assess client needs and match appropriate resources and also needs to begin addressing the wage equity issue among providers, making recommendations in both those areas.

Report Organization

The report is organized in eight chapters. Chapter I provides an overview of mental retardation and the responsibilities of the Department of Mental Retardation. Chapter II profiles Connecticut's community living arrangements and the DMR clients who live in those settings, while Chapter III describes components of an individual's residential program in a CLA, including planning and review. Chapter IV sets out DMR's oversight mechanisms for CLA residential services, including licensing and contract monitoring. Chapter V focuses on the processes triggered when an allegation of abuse or neglect is made related to a DMR client, while Chapter VI describes the variety of activities that occur when a DMR client dies. Chapter VII presents various analyses of death data related to DMR clients, including the results of the random sample case file review of CLA client deaths. Finally, Chapter VIII contains the committee's findings and recommendations, which primarily focus on improving oversight, enhancing regulations dealing with client health and safety, and strengthening DMR's residential management functions.

Agency Response

It is the policy of the Legislative Program Review and Investigations Committee to provide agencies subject to a study with an opportunity to review and comment on the recommendations prior to publication of the final report. The response from the Department of Mental Retardation is contained in Appendix B.