Chapter VIII

FINDINGS AND RECOMMENDATIONS

This chapter contains the findings and recommendations of the program review committee based on its investigation into the health and safety of DMR clients living in community living arrangements. As the preceding chapters show, the committee investigation included a review of the current oversight mechanisms in place at DMR as well as analyses of data related to DMR client deaths. In its review, the committee determined, as other studies and reports have indicated, death rates are higher and deaths occur earlier in developmentally disabled populations, including Connecticut's DMR clients, as compared to the general population. Further, in terms of specific deaths reviewed, the program review committee did not identify any direct systemic causes for the deaths, meaning that in almost all the cases, there were systems in place to address the risks to these clients. For one reason or another, though, the systems were not carried out.

After examining 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 the committee findings and recommendations presented below is to enhance oversight effectiveness.

The committee oversight enhancements affect the following areas: 1) CLA licensing and inspections; 2) individual oversight tools, including case management, human rights committees, and abuse/neglect policies and procedures; 3) post-death review; 4) and overall coordination of the oversight system. In addition, regulatory enhancements pertaining to DMR client health and safety are recommended to strengthen the regulations. Finally, the committee recommends DMR develop a system to assess client needs and match appropriate services, a key feature in optimizing client health and safety, and begin to develop a provider payment approach based on client needs that could, among other objectives, address current wage equity issues.

OVERSIGHT: LICENSING AND INSPECTIONS

FINDINGS

• A high percentage of licensing inspections of public and private CLAs are occurring after a provider's license/certification has expired (see Appendix J for a full analysis.)
• The licensing and inspection unit is understaffed and lacks staff with a nursing background, an important component in dealing with an increasing medically fragile population.
• Public and private homes are typically not complying with the regulatory timeframe for submitting required plans of correction outlining how citations will be rectified following licensing inspections.

_ Public homes are more likely to submit their required plans of correction later than private providers.

_ Almost all plans of correction for public and private providers, however, are acceptable to the DMR licensing unit on first submittal without further modification.

• There were no differences among public and private homes in the top five regulatory categories cited during inspections for the period analyzed by committee staff (see Appendix J for the full analysis.) Note: the regulatory categories encompass a broad range of areas where inspectors can cite providers as being deficient. Specific licensing citations (e.g. excessive water temperature) are made within the context of a broader regulatory category.
• DMR does not utilize its full range of enforcement tools to ensure compliance with CLA licensing regulations. Although the use of one-year inspection cycles (the most "stringent" licensing enforcement tool currently used by the department) has declined since FY 97 from 20 percent to roughly 6 percent in FY 02, its use still indicates providers are not fully complying with licensing requirements.
• The focus of biennial licensing inspections is on announced visits with an emphasis on reviewing documentation maintained by the provider.
• The program review committee considered other models for overseeing licensing, inspections, and enforcement, but determined maintaining the function within DMR with enhanced staffing and improved inspection follow-up and enforcement was the best option.
• DMR is not consistently using its relatively extensive automated licensing database to examine the licensing/inspection process for community living arrangements from a broad management perspective.

Background

State regulations require annual license renewals and biennial inspections of public and private community living arrangements to help ensure the health and safety of DMR clients living in CLAs. Providers are required to submit timely plans indicating how they will rectify any citations resulting from inspections, who will be responsible for implementation, and when the problem(s) will be corrected. Until recently, there was no mechanism to independently verify all plans were implemented until the next inspection in two years. The department has several enforcement tools to ensure compliance with state regulations. DMR also has a relatively extensive automated database system tracking most of the key elements of the licensing/inspection process.

Problems

Inspections for almost two-thirds of public homes and 40 percent of private homes occur after an operating license has expired. (See Appendix J for more detailed analysis.) Given most licensing inspections occur once every two years, late inspections extend an already lengthy time period between inspections, allowing possible client health or safety problems to go undetected for longer timeframes. Licensing data further show public and private providers are not adhering to the regulatory timeframe for submitting their plans of correction. The plans outline a provider's actions to rectify citations found during a licensing inspection. Further, public homes typically take three weeks longer than private homes to submit their required plans of correction. Untimely, late plans of correction lengthen the time to rectify inspection citations, unnecessarily extending the potential for client health and safety problems. The department also does not use its full range of enforcement actions to ensure compliance by providers, as highlighted earlier in the report.

Causes

During the years analyzed, the department's licensing unit functioned with six inspectors responsible for licensing and inspecting close to 800 public and private CLAs operating statewide. (The unit hired an additional inspector in mid-2002.) Executive Order 25 (February 2002) further required the licensing unit conduct unannounced inspections, of which close to 170 such inspections are anticipated annually. This equates to a ratio of roughly one inspector for every 85 homes when calculated on an annual basis. The department's quality assurance director and licensing unit supervisor concur licensing inspectors should have annual caseloads of between 60-70 homes.

To deal with the understaffed licensing unit, DMR initiated a process requiring regional contract monitors to conduct follow-up "visits" to ensure plans of correction are properly implemented. The process, however, has not been completely operationalized at present. DMR further takes the position that available enforcement tools, such as compliance orders, issuing fines, or revoking providers' licenses, should not be used to require compliance from providers. Instead, the department's practice is to work with providers to ensure compliance.

Effects

Overdue inspections and late plans of correction run contrary to state regulation, compromise the overall integrity of the licensing and inspection process, and may lead to increased client health and safety risks. A lack of full enforcement to ensure provider compliance, along with consistent management analysis of the licensing/inspection system using available automated information to oversee system performance and detect areas for improvement, only exacerbate the issues.

Remedy

Provide a licensing and inspection system that is timely, geared toward complete compliance on the part of public and private providers through enhanced staffing, uses the available and appropriate automated information for continuous management oversight, and is results-oriented.

RECOMMENDATIONS

The DMR commissioner shall require all CLA licensing inspections be conducted within the specified regulatory timeframe. The department shall also fully enforce state CLA licensing regulations through appropriate use of its full range of existing enforcement tools, including compliance orders, more unannounced inspections and, if necessary, license revocations. Additional tools, such as fines required through C.G.S. Sec. 17a-227(e), as well as others deemed appropriate by the department, shall also be used to ensure providers fully comply with state regulations on a timely basis.

DMR's licensing and inspection unit shall be responsible for overseeing the entire licensing and inspection process, including complete follow-up to licensing citations issued during inspections. To assist in this function, DMR services and systems unit staff currently used to inspect regional centers shall be transferred to the CLA licensing and inspection unit by July 1, 2003. (See Appendix J for further discussion.) DMR licensing inspectors shall incorporate a more interactive approach with provider direct care staff when inspecting public and private community living arrangements. At minimum, this approach should include verbal questions of direct care staff on an as-needed basis to ensure such staff is fully aware of how to handle client health and safety issues, including what actions to take during emergency situations.

At least half of the unit's standard biennial licensing inspections shall be conducted on an unannounced basis (this is in addition to the unannounced follow-up inspections currently conducted by the unit in response to Executive Order 25). On-site follow-up visits by licensing inspectors shall occur for all plans of correction submitted to DMR resulting from inspections. All follow-up visits shall be unannounced and occur within 30 days from the DMR plan of correction approval date, unless an alternate timeframe is required by the department based on the severity of the licensing citation or the provider's approved timetable for fully implementing corrective action.

The department should make full use of its automated licensing and inspection data for management analysis purposes. (The system, however, needs to begin incorporating provider's corrective actions taken to rectify citations issued during inspections and be frequently updated.) The system should be used from an overall management perspective to identify any trends, systemic licensing/inspection issues, and provider compliance with state licensing regulations.

DMR should emphasize compliance and enforcement for its own homes, given inspections of those homes are typically more delayed and plans of correction generally submitted later than private homes.

Rationale

The committee believes centralizing the complete CLA inspection function, enhancing inspection staff, and fully utilizing enforcement tools will lead to a more coordinated, timely, and effective inspection process. Actual follow-up to providers' plans of correction by central licensing staff will help ensure providers are actually complying with their plans, while "closing the loop" of the inspection process. Licensing inspectors will be fully aware of how well providers are complying with licensing regulations.

The recommendations also require inspectors to conduct more questioning of staff during inspections. This element gives inspectors a baseline understanding of how well direct care staff understands what to do in different situations, including emergencies, regarding client health and safety.

The proposed staff being transferred from the Service and Systems Enhancement Unit to the Licensing and Inspections Unit includes three registered nurses. Given no CLA licensing inspectors are registered nurses, having this experience in the licensing unit will provide a medical perspective to the process that does not exist. Enhanced staffing within the licensing unit not only centralizes the entire licensing function within the unit, but better equips the unit to oversee additional responsibilities for DMR services currently not licensed but requiring oversight for federal reimbursement purposes.

OVERSIGHT: CASE MANAGEMENT

FINDINGS

• Currently, there are no consistent statewide operational requirements for case managers for CLA clients.
• Case managers for persons living in public homes have smaller caseloads and different job expectations than many case managers for persons living in homes run by private providers. Private home case manager responsibilities and caseloads also vary by region (as highlighted earlier in the report.)
• For clients living in private provider homes, the DMR case manager is the only department representative solely focused on the individual.
• DMR recently developed a set of performance evaluation elements for case managers, yet it is unclear how they will be applied given the practical differences among DMR case manager responsibilities.

Background

Case managers have been and continue to be described by DMR as the central focus of the individually oriented support system for DMR clients. Over the years, the DMR case manager role has differed depending on the client setting, in response to increases in the DMR population without similar increases in case managers. Also, additional functions have been added to the role.

Having a case manager for every DMR client is at the core of the individually focused service and support system-that there is a person working in the interest of an individual DMR client, and involved in the client's life. As the service and support structure of DMR has changed, so have DMR expectations of case managers. This report noted many private agencies provide case management services for DMR clients, while the actual DMR case managers are in more of a monitoring role.

DMR is aware the role of case managers is problematic. While in the early days of community living, very detailed guidelines related to aspects of the case manager function were prepared and used, those guidelines are now viewed as out of date. In 1995, DMR commissioned a study to evaluate the functions of case managers, although no direct changes resulted from the study. In recent months, DMR has been working on clarifying case manager roles by revising job responsibilities and performance evaluation goals, still in draft form. Over the years, the case management function is managed at the regional level, which has allowed for regional differences.

While there are no state required case manager standards for client contact, the federal targeted case management program, which provides funding specifically for case management, requires a minimum of some contact related to a client every month (This could be a phone call to the home or day program) and actual physical contact with the client every quarter.

Problem

DMR case managers are not equally involved in the lives of their clients, and that involvement level is dependent on where people live (i.e., public or private CLAs) as opposed to differences in support needs. Because of this situation, DMR's reliance on the case manager system as the front line for identifying needs and programs to meet those needs, particularly in the health and safety area, is questionable.

Cause

The changing structure of the DMR service and support system, including the private/public home mix along with the regional approach.

Effect

The confidence in DMR's understanding of the needs (and changing needs) of its clients in group homes is weakened when the connection between case managers and individual clients is diminished.

Remedy

Establish statewide standards for all case managers and ensure their implementation.

RECOMMENDATIONS

DMR should clarify its expectations of the case management function and develop measurable performance standards for its case managers. This should be done with a focus on how best to have consistent reliable information about individual clients.

DMR should standardize case management record keeping statewide, including case management logs.

OVERSIGHT: HUMAN RIGHTS COMMITTEES

FINDINGS

• Human rights committees operate under a general policy statement established in 1986, prior to the growth in community living settings. The absence of consistent statewide guidelines, in particular as they relate to group home settings, including the need for getting consent from other residents, can lead to different results from different committees, affecting client health and safety.

Background

The human rights committees are regional committees designed to review program proposals that might infringe upon a person's human or civil rights (e.g., whether using a room monitor would be an undue invasion of a person's privacy). These committees were required by the Mansfield consent decree. No statewide procedures were ever developed to guide the work of the regional human rights committees (see pages 44-45 for background.)

Problem

These committees can be a pivotal part in the decision making about aspects of a individual's program relating to health and safety. With no guidelines in place, it cannot be determined what forms the basis of the committee's decisions. The nature of the decisions coming from the various regional committees is not tracked by DMR; thus there is no assessment of whether the committees are consistent in their recommendations.

Effect

There is no way of knowing if regions are balancing health and safety issues related to potential human rights violations in the same way.

RECOMMENDATION

The DMR policy on the human rights committees shall be amended to include specific considerations on how the committees shall make their decisions, including the establishment of client health and safety as a primary interest.

OVERSIGHT: ABUSE AND NEGLECT

Findings

· The approach to investigations involving DMR clients in CLAs is inconsistent, and largely dependent on whether a person lives in a public or private setting.

· There was no central DMR management accountability for abuse/neglect investigations until 1997-and that only applied to public homes until October 2002, when a partial connection to private provider investigation review was established.

· There has been no consistent standardized approach to tracking and following up on recommendations from abuse and neglect recommendations until recently.

· OPA within the last year has begun tracking information about abuse/neglect cases in an automated format, which will allow it to maintain the statewide registry of abuse/neglect reports and actions it has been required to maintain since 1984, but until recently had not.

· The interagency memorandum of agreement between OPA and DMR (and other agencies with jurisdiction over abuse/neglect) was executed in 1992, just as community living settings were expanding.

Background

Since 1984, OPA has had a central statutory role in receiving and investigating allegations of abuse and neglect pertaining to DMR clients age 18-59, the large bulk of DMR clients, but was never funded to conduct all investigations. Per an interagency memorandum, OPA and DMR have divided up the function, with DMR responsible for investigations of DMR clients in residential or day program settings, and OPA responsible for investigations of people living in family homes or on their own. OPA meets its statutory obligation through an oversight role by reviewing the investigations done by DMR (and private providers) to determine if OPA agrees with the conclusions. DMR has five full-time investigators in its division of investigation. However, most investigations related to public settings are done by DMR employees with other full-time responsibilities, while investigations related to private settings are done primarily by the private providers. (See Appendix K for current caseload information and comparative abuse/neglect substantiation information)

Problem

There is no consistent, coordinated approach for abuse/neglect investigations relating to DMR clients. The lack of central management responsibility not only prevents meaningful administrative control over issues such as timeframes and completeness, it also can create conflicts of interest within regions between addressing abuse/neglect concerns about private agencies while also supporting them as service providers.

Cause

The system has developed over the years in an ad hoc way, over a time period when the nature of the DMR service system has changed dramatically.

Effect

From the point of view of the individual client, the nature and quality of the investigation should not be dependent upon whether the person lives in a DMR-run group home or a private provider home. A differentiated system not only increases the chances problems might slip by, but also inhibits the recognition of any patterns or trends.

Remedy

The management accountabilities need to be clearly identified for all abuse/neglect investigations pertaining to DMR clients in all residential and day settings.

RECOMMENDATIONS

DMR should continue to maintain its Division of Investigations within the Department of Mental Retardation. The division head should report directly to the commissioner. The division should be responsible for either conducting abuse/neglect investigations or monitoring and reviewing investigations done by private providers. DMR should develop timeframe standards for investigations and track compliance with those standards.

DMR, through its Division of Investigation, shall develop a protocol for monitoring and reviewing investigations done by private providers, including increased monitoring and assuming allegation investigations deemed to be most serious. Among other factors, DMR shall investigate whether staffing was an issue in the alleged abuse/neglect by obtaining actual staffing records for the pertinent times in question. (e.g., was staff working multiple shifts or was full complement of scheduled staff absent? )

All sudden/unexpected deaths shall be screened by the Division of Investigations with the desk audit process DMR began earlier in 2002 to determine if there is suspicion of abuse/neglect. The nurse/investigators conducting those audits should also be available to assist with other abuse/neglect allegations issues in either public or private settings.

Any serious injury reported resulting in hospital or ER treatment shall be submitted immediately to the Division of Investigations, whether or not abuse or neglect has been alleged, and the division shall make a preliminary inquiry as to whether abuse/neglect might have occurred.

All investigations of deaths where abuse and/or neglect is suspected shall be conducted by the Office of Protection and Advocacy and shall be accompanied by a transfer of the appropriate resources from the Department of Mental Retardation to OPA to conduct such investigations. Further, OPA, in consultation with DMR, shall establish protocols on how such investigations shall be carried out.

OPA and DMR shall develop and institute a new memorandum of agreement, which shall include specific provisions for how OPA will review and monitor completed investigations, and otherwise ensure the agreement accurately reflects the working relationship between the two agencies by June 30, 2003.

Finally, as DMR is apparently desiring that investigation reports should be limited to findings of facts and whether abuse/neglect was substantiated, and should not include programmatic recommendations, DMR should develop a way for the pool investigators to provide input for program improvement, in order to tap their experience. For example, this could be accomplished by establishing a best practices team from within the pool investigator groups to meet periodically and develop recommendations.

Rationale

Clarifying and elevating management accountability for overseeing DMR investigations will enhance the importance of abuse/neglect investigations and lessen concerns about conflict of interest perceptions. The program review committee considered the idea of establishing OPA as the sole investigator of all allegations of abuse/neglect, but determined such a recommendation would be unworkable at this time. First, the resource demands for conducting all such investigations could not be met by simply moving positions from DMR to OPA, and would require new funding. Second, the exact staffing needs are not known at this time.

While there are five investigators dedicated full time under the Division of Investigations, most investigations are done by either DMR employees who have other full-time responsibilities or by private provider staff. In order to adequately staff OPA to handle all the investigations, a workload analysis would have to be conducted to determine the full time equivalent (FTE) persons needed to perform investigation work currently.

However, the committee strongly believes that in death cases where abuse and/or neglect is suspected it is crucial that objectivity in conducting investigations can be assured, and therefore recommends the Office of Protection and Advocacy be responsible for carrying out inquiries where such deaths are involved. Removing that responsibility from the service agency, DMR, should eliminate any perception such investigations are not conducted thoroughly and objectively. Recognizing this should not involve a great number of cases, the committee recommends the appropriate level of resources be transferred from DMR to OPA to staff this role, and the two agencies consult and develop protocols on how these investigations be conducted.

It is also important OPA continue its oversight role of all investigations of abuse and neglect of DMR clients and that OPA's role is clarified in a revised memorandum of agreement.

OVERSIGHT: POST DEATH REVIEW

FINDINGS

• The post death review process for DMR clients living in community living arrangements does not consistently examine health and safety factors beyond a client's medical care, resulting in a systemic weakness in the process.
• DMR has not consistently analyzed mortality data of client deaths on an aggregate basis to identify trends, issues, or areas for improvement regarding client health or safety.
• Client mortality files reviewed by committee staff typically lacked specific documentation indicating recommendations developed through the regional or state level mortality review processes were fully implemented.
• The committee staff's analysis of DMR client mortality files also determined the regional mortality review process exceeded by an average of five months the DMR policy to submit committee findings, recommendations, and actions to the Independent Mortality Review Board (IMRB) within 90 days of the death. DMR, however, has placed an emphasis on ensuring regional mortality reviews are conducted more promptly, and notes all regions are now up-to-date with their reviews. This was evident in the IMRB meetings attended by committee staff. (Committee staff examined a random sample of 177 cases involving the deaths of DMR clients living in group homes over a 10 year period.)
• A varying numbers of death cases examined by committee staff were classified as accidents, depending on which documentation was used in the files.

Background

All deaths of clients living in community living arrangements must be reviewed by a regional mortality review committee. A state-level Independent Mortality Review Board also exists to review all sudden or unexpected deaths, deaths referred from the regional mortality committees, and a sample of all deaths occurring in a given year. DMR policy and Executive Order 25 (effective February 2002) require the post death review process to "examine events, overall care, quality of life issues, and medical care preceding a client's death." The IMRB is also to make recommendations for systemwide improvements or training to enhance client care and reduce risk. The central office of DMR is developing a comprehensive database of client mortality information, which includes about two recent years' worth of data.

Problems

Program review committee staff's analysis of mortality files (as documented above) and its observations of regional and state mortality review committee meetings, concludes:

• the post death review process for CLA clients focuses on clients' medical care, with limited examination of the other required components;
• although the department's "root cause analysis" process is designed to examine the various factors leading to a client's death, it is a relatively new, resource-intensive process that has not been extensively used to date; and
• DMR's does not analyze client mortality information on an aggregate basis to identify trends in causes of death or contributing factors, or client health and safety areas needing improvement at either the regional or statewide level. (The department notes it will soon begin such an analysis using its newly developed mortality database.) The result is a gap in the mortality review process because there is no single mechanism that comprehensively examines the collective key elements related to a client's medical care and overall personal care, as well as mortality trends in the DMR client population.

Causes

A mortality review process that does not fully examine all factors leading to or causing client deaths due to delays in review of cases and the lack of an integrated, automated database.

Effects

Without a complete and timely post death review of a client' overall care, quality of life issues, and medical care, the post death review processes of the regional mortality review committees and the Independent Mortality Review Board do not result in a comprehensive examination of the factors surrounding a client's death. As a result, underlying problems potentially affecting client health and safety may go undetected and unrectified by DMR.

Remedy

Ensure the mortality review processes conducted by the regional morality review committees and the IMRB examine all required factors relating to a CLA client's death, and that DMR consistently analyzes client morality information. At minimum, this should include examining group home staffing at the time of death, any outstanding corrective actions to licensing citations, information sent to the chief medical examiner's office, and any other factors deemed necessary by DMR. For deaths involving abuse or neglect allegations, the post-death review process will have access to abuse/neglect investigations, including analysis of the provider's staffing at the time of the alleged incident (see recommendation on abuse/neglect on page 125.)

RECOMMENDATIONS

State statutes should be amended to require the Department of Mental Retardation conduct a comprehensive and timely post-death review into the event(s), overall care, quality of life issues, and medical care preceding a client's death. The reviews shall be conducted by the appropriate regional mortality review committee and/or the Independent Mortality Review Board, as determined by DMR.

DMR and the IMRB shall utilize the mortality review database being developed through department's health and clinical services unit to examine client deaths from a broad management perspective. The analysis should be used to identify client health and safety trends, gaps, and areas needing improvement. Any recommendations (including implementation status) stemming from this analysis and those developed through the formalized regional and state-level mortality reviews, should be fully documented by DMR.

DMR shall ensure that any death involving an accident, or where an accident was considered a contributing factor, determined through the mortality review process or the death certificate coding process, shall be categorized as an unexpected, accidental death in all relevant department records.

Rationale

The program review committee believes the mortality review processes at the regional and state levels provide the mechanism whereby a full review and analysis of a client's death can and should occur. The processes need to be comprehensive, timely, and results-oriented. Requiring a statutory provision to this effect should help ensure such reviews are conducted in a complete and expeditious manner. An additional analysis by DMR and the IMRB examining client mortality information from a macro perspective, making any necessary recommendations, following up on their implementation status, and fully documenting this process will provide the department an opportunity to develop or modify client health and safety programs and services.

OVERSIGHT: SYSTEM COORDINATION

FINDING

There is a lack of coordination among the many separate oversight and regulatory tracks that DMR uses to monitor itself and its providers and the services they provide.

Background

DMR has, over the years, initiated many oversight tools to regulate providers taking care of DMR clients. In its testimony at the committee's November 19, 2002, public hearing, DMR indicated it had 30 separate oversight tracks. Many of these first came into place when DMR began contracting with private agencies to operate community living arrangements after DMR closed or significantly down-sized its two training schools. Other oversight mechanisms were added since the early 1990s to address problems as they surfaced.

Problem

There is no consistent or uniform way DMR uses all of the information collected through these oversight tools to comprehensively assess, evaluate, and manage the department's own services and those provided by its contracted agencies. DMR has initiated a "program integrity" system at the central office, but over the three-year period since the program's inception, has only conducted 35 reviews of private agencies and one DMR region; not frequent enough to provide meaningful accountability.

Cause

DMR's regional organizational structure establishes a service delivery system that is close to the clients, but the oversight mechanisms are split between the regions and central office. Further, communication among the staff who perform the various oversight functions - contract management, licensing, auditing, and investigations - is not clearly defined nor formalized.

Effect

Because oversight mechanisms are varied and carried out by many different central office and regional staff, there is a lack of coordination in using the oversight information produced in the most effective way - to improve services or take enforcement action. Further, the central office approach - program integrity -- while providing a valuable framework, does not occur often enough to be effective.

Remedy

Provide a data-driven, results-oriented system that effectively collects and regularly analyzes comprehensive information from the various oversight mechanisms and uses the information to ensure DMR and provider accountability.

RECOMMENDATION

Program Integrity. Require the regional contract managers to use the program integrity format (see Appendix L) and its review components when they conduct their mid-year and end-of-year contract performance reviews. Those components shall include:

• Audits;
• Quality assurance --licensing and inspections, physical plant issues;
• Special protections (e.g., abuse and neglect);
• Individual and family satisfaction;
• Case management;
• Health, including use of psychotropic drugs and mortality review findings and recommendations; and
• Contract information, including staffing patterns, turnover, and timeliness in filling staff vacancies.

The Quality Assurance Division (QAD) in coordination with the regions shall develop benchmarks for each component area so that the reviews are objective, uniform, measure performance, and produce meaningful, action-oriented results that providers must implement within a reasonable timeframe or enforcement action will be initiated. (See Appendix M for benchmarks suggested by the program review committee.)

Prior to the mid-year and annual reviews being conducted, contract managers shall collect all the relevant information necessary to evaluate each component area as determined by the QAD, analyze the information, evaluate the provider's performance in each component area and prepare a list of findings for review by the Assistant Regional Director prior to meeting with the provider. If there are no concerns in any component area, the findings report shall state such.

The mid-year and annual reviews shall be conducted by the Assistant Regional Director (or Directors if the provider is in multiple regions) and all contract managers for that provider. Their participation is mandatory and the reports must be signed by all who conduct the reviews. Participation from central office staff (auditing, operations, and QA) and regional supervisors of case management, health services, and investigations shall be sought but is not necessary to conduct reviews.

A uniform automated tracking system shall be completed by DMR (see Appendix M) and the results of each review by component area shall be entered on the system by the contract manager and available to all DMR regional and central office staff. Oversight of the tracking system, and its recommendation implementation shall be the responsibility of the Assistant Regional Directors for Private Administration and the Director of the Quality Assurance Division at DMR central office. In concert, they shall ensure timely reviews are conducted, that each component area is addressed and that any recommendations made are implemented in the timeframe given.

For public sector services, DMR shall use the same format, and the reviews shall be conducted with the appropriate DMR residential managers. The directors of each relevant component area (quality assurance, investigations, health services), and a private provider from the appropriate service region shall conduct the reviews.

Enforcement. DMR shall take enforcement action when there a number of concerns raised through the program integrity reviews. For example, if there are more than five component areas where concerns are raised, or one component area where a number of concerns surface, DMR shall put the provider (or its own homes) on a "watch list", including increased monitoring. If the provider does not adequately address the concern areas by the next review, the provider shall be placed on a partial year contract and continue to be monitored. For its own homes, DMR shall hold the appropriate residential manager responsible for implementing required changes. If problems remain at the next 6-month review, DMR shall begin reducing the contract by five percent per-month until compliance is achieved, or the contract is terminated. For its own homes where deficiencies remain, DMR shall begin disciplinary proceedings for those agency personnel deemed responsible for the continuing non-compliance, and or make appropriate staff changes.

Modifications shall be made to C.G.S. Section 17a-227 to provide for such contract enforcement authority.

Rationale

The committee believes this recommendation places the responsibility for comprehensive provider evaluations with the appropriate staff and their supervisors in the region. By requiring information for each component area be examined and tracked will mandate that the reviews be thorough, uniform, and consistent, and set accountability for maintaining standards.

Requiring specific staff to collect all information for these component areas, analyze it, and meet at least twice a year to conduct the reviews, will ensure there is additional objectivity in the reviews, that cross-regional experience is considered in the evaluation, and that comprehensive information on each provider's performance is reviewed on a frequent basis.

Requiring a tracking system that recommended actions be implemented within a certain period of time and that the tracking system be overseen by regional and central office management, will enforce service accountability for both private agencies and DMR.

Conducting these reviews twice a year places a comprehensive, objective approach on an oversight system already in place, rather than adding a new level of monitoring and ensures that review, analysis and follow-up happens often enough to be meaningful.

Further, because service provision, contracting for service, and regulatory authority, including licensing and inspections all occur within the same agency, there is a tendency for those functional lines to sometimes blur. Requiring mandatory, stepped-up enforcement actions to be taken against private providers and its own regional residential supervisory staff removes the subjectivity and delays that can sometimes occur with oversight and achieving compliance.

REGULATORY ENHANCEMENTS: EMERGENCY PLANNING

FINDING

There is a need to enhance a number of the regulations related to client health and safety in Community Living Arrangements.

Background

Many of the regulations concerning CLAs were put in place in 1992, and many of those adopted at that time were modeled after the federal ICF/MR regulations, which were initiated in the 1970s. These regulations had a heavy emphasis on environmental inspections, and emergency planning was centered around fire drills and evacuation requirements.

Problem

Because the regulations and licensing inspections concerning emergency planning focus on fire and evacuations, this is where providers and regulators have also placed their attention, even though these may not be the cause of most of the emergencies that occur in CLAs. Further, the requirement that only one staff person per shift be trained in CPR appears inadequate, given the medical needs of clients in CLAs, and that often shift coverage in a CLA consists of only one or two persons.

Cause

Outdated regulations that do not adequately address the spectrum of emergencies that might occur in CLAs.

Effect

Providers develop emergency plans to respond to regulations, and not to the most likely emergencies. As a result, CLA staff may be ill-prepared to deal with some types of emergencies.

Committee staff reviewed 213 case files of DMR-client deaths between FY 92 and FY 01. In about half the cases --127 -- some type of issue related to the medical or personal care of the client was noted. This ranged from relatively minor deficiencies in staff or case management documentation and record-keeping to more serious problems where staff did not properly follow guidelines for appropriate client care like diet or food consistency or use of safety equipment. (See Appendix N.)

In a substantial number of the 127 cases, staff appeared ill-prepared to deal with the emergency at hand. Seventeen cases involved a CPR issue, where staff was either not trained to perform CPR, or there were questions about whether staff began or performed CPR. In 14 cases, calling 9-1-1 was not done, or was done after calling someone else (e.g., a nurse or house manager). In several cases, staff on duty appeared to panic in an emergency situation, perhaps indicating inadequate training. These situations involved finding clients unresponsive, not breathing, or choking, In no case did the committee find inadequate preparation in evacuating clients in case of fire, etc, surrounded a death.

In addition, in more than 30 cases, it appeared from the file review that key information about each client was not always communicated to emergency medical service personnel or hospital staff. Finally, documentation on staffing and hours worked is not routinely collected as part of any post-death review or abuse and neglect investigation.

Remedy

At a minimum, require that provider emergency plans and training include when to: 1) call 9-1-1; 2) call police; 3) start CPR; and 4) perform the Heimlich maneuver. Providers should also practice these emergency situations frequently in the home so that staff are prepared. Providers should also ensure key critical information on each client is summarized and in written format that can be given to emergency response personnel and or/hospital staff. Providers should also be able to produce, upon DMR request, actual staffing and consecutive hours worked for an established time period in any CLA.

RECOMMENDATION

Licensing inspectors shall ensure providers' emergency planning contains how staff should address emergency situations, and shall verify, in addition to document verification, through asking direct care staff what the procedure is for a given emergency situation. Regulations should also require all staff should be trained in CPR, not just one person on each shift. Regulations shall also require that providers be able to produce, upon advance request by DMR, staffing schedules and actual staffing and hours worked for the requested time period.

REGULATORY ENHANCEMENTS: STAFF SCHEDULING

FINDING

DMR needs to examine when health and safety is put in jeopardy by staff who are required to work too many hours without time off.

Background

No labor laws exist to protect workers (other than minors, handicapped persons and elderly) from being required to work limitless hours straight. By contract, there are limitations as to situations in which DMR or providers can call an emergency requiring mandatory overtime. However, one of these situations is when a staff member does not show up for his/her scheduled shift, and the employer

Problem

When staff are required to work too many hours without adequate time off, their capacity to be alert and attentive to the client is diminished, and client health and safety can be compromised.

Cause

Private providers cite a shortage of staff, especially staff an employer can call as substitutes when "back-up" coverage is needed (e.g., when someone calls in sick for an assigned shift). DMR, which has higher staff ratios in its homes than most private homes, also faces shift coverage issues when a staff person cannot work his/her assigned shift, requiring someone else to be held over from the previous shift.

Effects

The problem may be exacerbated when staff who are continually asked to work mandatory shifts quit the job, creating higher turnover and adding to staff coverage problems. Clients may be put at risk by staff who are tired and not alert. At least one of the death cases reviewed by program review staff involved a staff person working many hours without adequate time off.

No data exist on the number of hours staff work in any straight time period. Further, no one has been examining staff issues (except in isolated cases), as part of the abuse and neglect system or the mortality review process to determine whether work schedules may contribute to health and safety issues.

Remedy

Begin collecting appropriate data on staffing circumstances when an incident of abuse/neglect or a death occurs. Based on what the data show, DMR should determine whether to establish a policy that limits the number of consecutive hours a staff person works without a significant period off-duty.

RECOMMENDATION

Require that any abuse or neglect investigation or regional or state-level mortality review examine the number of hours staff had been on duty at the time of the incident. Require the department's Strategic Leadership Center to compile the data from such reviews. By July 1, 2005, the center shall make a recommendation to the DMR commissioner on whether a policy is needed to limit the number of consecutive hours a staff person can work in both DMR and privately operated homes.

Rationale

This will begin to provide a body of data to establish whether staff fatigue or overload from working many hours without time off pose greater risk of harm or death to clients.

RESIDENTIAL SYSTEM MANAGEMENT: ACUITY AND PLACEMENT

FINDING

DMR does not have a system in place that collects and maintains data to evaluate whether its DMR clients are living in the most appropriate setting, or whether needs of clients are matched with residential resources and payments.

Background

DMR went from an agency that serviced its clients in one type of setting to one that provides services to clients in a variety of settings. But the department's system to track the acuity of clients and whether they remain appropriately placed is deficient. Ten years ago, when the community living arrangement model was relatively new, the program review committee found the lack of acuity measures to assess whether clients were appropriately placed. The agency has not improved its data collection, and without that data any evaluation of clients' medical, behavioral, and social needs occurs on an ad hoc basis.

Problem

Without a system that collects and maintains needs assessment information that is evaluated on some ongoing basis, DMR cannot determine whether its clients remain in the most appropriate residential placement, nor can it readily assess client acuity and link those needs to provider pay for various levels of care. This means a client who may not need the level of staffing and care in a given CLA is there because it is where the vacancy occurred. Further, clients who are elderly and whose medical needs have intensified may no longer be able to be taken care of in a CLA, jeopardizing their health and safety as well as others in the home.

Cause

DMR moved its clients from institutional settings to the community in a relatively short period of time. Its data system (CAMRIS) was created to maintain information on the class members in the Mansfield consent decree. The system has been expanded and modified, but remains inadequate to manage a placement and payment system for more than 6,000 residential clients and a waiting list of 1,600.

Effect

Initial placement rests with each region's Planning and Resource Allocation Team, and ongoing assessment is the responsibility of an interdisciplinary team. Both are conducted on an individual basis, not on a system basis to ensure all clients continue to be in the most appropriate setting and the system is serving as many clients as possible in the most cost effective way.

Remedy

DMR should enhance its client information system to provide essential data on needs, and develop an ongoing evaluation system to ensure clients are in residential settings matching their needs in the most cost-effective manner. Developing such a system requires that DMR recognize it is responsible for managing and overseeing an entire residential and payment system, as well as serving individual clients. DMR acknowledges this and is now working with a health statistician to begin developing needs indicators and assessment measures for residential placement.

RECOMMENDATION

The commissioner of DMR should make the upgrade of the CAMRIS system a management priority to evaluate appropriate placement of, and payment for, clients in the system. Needs of clients should be evaluated at least every two years to ensure they are in the most appropriate setting.

RESIDENTIAL SYSTEM MANAGEMENT: AGING CLIENTS

FINDING

DMR's client population is aging and DMR has not yet developed a plan on what types of settings will best meet this population's residential and increasing medical needs.

Background

DMR's population is aging, as is the population in general. Fifteen percent of DMR's CLA population is 60 or older. As discussed above, many of DMR's clients have significant medical problems in addition to their mental retardation. Some of these conditions grow worse with age, while others first present when a client gets older (e.g., Alzheimer's with Down Syndrome).

DMR recognizes its population is getting older. In 1997, the department looked at altering Southbury Training School to make at least a portion of that facility a certified skilled nursing facility (SNF) to accommodate clients as they became more medically fragile. That idea was quickly abandoned as the costs to STS's physical plant to become a SNF would have been prohibitive.

DMR, at the beginning of 2002, established a task force to examine the issue of its aging clientele. It is still working on recommendations to propose to the DMR commissioner as of the completion of this study.

Problem

As persons in CLAs age they often experience medical problems difficult for the direct care staff in the CLA to properly address. Based on the file review conducted by committee staff of DMR-client deaths in CLAs, a number of clients who died had extremely serious medical problems. Fifty-eight percent had Do Not Resuscitate (DNR) orders, some of the DNR orders followed the client back to the CLA after a hospitalization. Twenty-three percent of the clients who died in CLAs had had a feeding tube inserted at some point prior to death.

Only 21 of the 771 CLA homes have 24-hour nursing services. In all others, nursing services are consultative or provided on a less than 24-hour basis. As discussed in the briefing, many nursing services can be delegated, but as these tasks become more medically oriented and complicated, it seems less likely nurses will want to delegate such duties, given the RN is ultimately responsible for ensuring the persons are trained and competent before delegating, or that direct care staff will be able or willing to have these duties assigned them. Further, as nursing shortages face the entire health care delivery system, it may not be possible to provide 24-hour staffing at many more homes, even if the DMR residential system had the funding available for such enhancements.

Cause

CLA clients are aging in place and many homes are not equipped or appropriately staffed to address increasing medical needs. There are not the financial resources in terms of funding the 24-hour nursing staff that would be needed in many more homes, and RN and LPN shortages exist throughout the health care system.

Effect

At least one provider has already stated it will no longer be able to care for clients with DNRs or certain tubes if the home does not already have 24-hour nursing care. In other cases, from committee staff's file review, direct care staff seemed ill-prepared to deal with clients with DNRs, especially in emergencies. If staff are not trained or prepared to give certain medical care to medically fragile clients, the clients' health and safety are put at risk, as well as those of other residents in the home.

Further, as more financial resources go to provide nursing services and other enhancements to support aging CLA residents who have increasing medical issues, fewer openings and monies are available for clients on the waiting list.

Remedy

Skilled nursing facilities in the community provide a residential and medical alternative to community living arrangements that can no longer furnish the kind of care needed by elderly, medically fragile clients.

RECOMMENDATION

For persons 60 years or older who have had two hospitalizations in a six-month period, DMR shall conduct a review to ensure the residential and medical needs are still most appropriately met in the CLA or whether a residential placement in a skilled nursing facility might be more appropriate.

Rationale

The 1987 federal OBRA law requires a two-level preadmission screening before anyone believed to be mentally retarded or developmentally disabled is admitted to a skilled nursing facility, even for a short-term stay. DMR does the second-level screening in Connecticut.

DMR will continue to be required to do these second-level screenings, and will be a check to ensure no one is being placed who does not require nursing home level of care.

Further, Connecticut's mentally retarded population in skilled nursing facilities declined 10 percent from 1996-2000¹¹. It is now 12 per 100,000 general population, about the national average of 13. The committee believes DMR has been a strict SNF gatekeeper, especially where clients from DMR-funded or operated facilities are concerned.

However, the committee believes returning medically fragile persons to a CLA without appropriate medical staffing can be potentially harmful to the client, as well as the other residents and staff in the CLA. Enough financial and medical staff resources simply do not exist to provide all the enhancements needed at CLAs. Skilled nursing facilities provide an alternative that addresses a client's medical needs when those become of great concern.

RESIDENTIAL SYSTEM MANAGEMENT: CLA VACANCIES

FINDING

DMR has no good information system to track and manage its vacancies in CLAs.

Background

As discussed above, DMR's residential placement system is mainly a regional function. There is a philosophical and practical emphasis on trying to ensure referrals to CLAs are appropriate so a client will "fit in" with the other residents in the home and the client's placement will become permanent. It is not a system where people are expected to be moving in and out, instead it is one that assumes long-term stability.

The state funding of CLAs also banks on stability in the system. The vast majority of CLAs (other than ICFs/MR and DMR CLAs) are funded by DMR on a yearly contract basis, not a person-day basis, although federal Medicaid reimbursement for the Home and Community Based Waiver program does fund on a person-day basis.

When a vacancy becomes available in one of the CLAs, staff in the region are notified. Each month the regional staff send an "attendance" report to the central office on the number of clients in each private CLA.

Periodically, DMR's central office issues a report back to the region on vacancies in CLAs that have not been filled in more than 60 days.

Problem

The service system for placement of clients and refilling vacancies is a regional one. Managing the contracts for providing those services is also a regional responsibility, but administering the system to maximize Medicaid reimbursement is largely a central office role. Their objectives may sometimes work at cross purposes, but neither has a good tracking tool for managing vacancies and ensuring they are filled appropriately and promptly.

The residential system is generally stable, with private CLA utilization calculated by DMR at about 95 - 98 percent for FY 01 and FY 02. However, there are vacancies. In FY 01, the average monthly vacancies in private CLAs across all regions was 56 (2.5%) and in FY 02 was 30 (1.2%). Some of these vacancies are open for long periods of time, a few as long as a year.

Cause

DMR's residential placement system is expected to place its clients in what is anticipated to be a permanent home. DMR's funding of the CLA system fosters this permanent placement; providers' DMR rates are not reduced when they experience a vacancy. Contractual language allows DMR to make reductions when a provider's utilization rate slips below 85 percent, but DMR has not exercised that option, believing it would place a provider in financial hardship.

Further, regional placement teams want to ensure the placements they make work out, so they may take longer to fill a vacancy than if the placement is for a short-term stay, or a financial consequence were at stake.

Effect

Neither the central office nor the regional offices have a tracking system for managing vacancies in the system. The department cannot provide -- without massaging a lot of different reports from different systems - data on how many vacancies there are, where they are, or how long they have been vacant.

The absence of such a system handicaps the regional placement and contracting staff, as well as the budgeting and revenue enhancement staff at the central office. Without such a system, placement teams may lose track of vacancies, or contract managers overlook long-standing vacancies a provider has when contract performance reviews are conducted.

Long-term vacancies have a financial impact on the state because of the lack of Medicaid reimbursement. DMR, in one of its periodic utilization reports to the regions, stated vacancies over 60 days cost the state slightly over $2 million in lost federal match for the period September 2000 to August 2001.

Further, with as many as 1,600 persons on the waiting list, there should be emphasis in making appropriate placements, but also making them quickly.

Remedy

Create a vacancy tracking system, for all CLAs -- private and public, and ICFs/MR -- to assist with residential placement, contract management and revenue enhancement.

RECOMMENDATION

The commissioner of DMR should ensure the development of a tracking system to manage all CLA vacancies is a management priority. The system should be automated, available to both regional and central office staff, and used as a management tool to assist with placement, contract management and revenue enhancement.

Rationale

This will provide a first-step in the ability to maximize placement resources, and fill vacancies more quickly. It will also provide readily available information to contract managers so they can better monitor provider performance in a key service area

WAGE EQUITY

FINDING

There is a gap between salaries paid to CLA direct care employees in DMR and private providers, which continues to grow.

Background

Nineteen percent of CLAs (148) in the state are operated by DMR and staffed with state employees. Many of these homes were opened for Mansfield clients when that institution closed. The DMR homes were also staffed with former Mansfield employees, who by contractual language had to continue to be employed. The salary structure for those DMR workers was begun in institutional settings, where staff was generally well compensated.

Also, to accommodate the transfer of former Mansfield clients into the community, the state began to contract with private agencies to operate group homes (CLAs) and employ their own staff as direct care workers. Private providers now operate 81 percent (623) of the CLAs.

The growth in CLAs has been in the private sector, from just over 500 homes in FY 92 to 623 homes currently. Meanwhile, the number of DMR homes has decreased in the past five years from 155 to 148.

As discussed above, DMR rates for CLAs are set when the home is first opened; DMR contracts with private providers are not renegotiated based on costs. Instead contracts are renewed annually, but monetary changes to contracts are generally limited to across-the-board percentage increases appropriated in the state budget.

Problem

The pay scales for DMR direct care employees are generally much higher than for private sector workers. A February 2002 DMR assessment of wage disparity shows the average wage differential is more than $9 an hour between the DMR CLA worker and the direct care aide in private group homes. (See Appendix O.)

There is also a significant pay scale differential among the private provider agencies, with larger unionized agencies paying much better wages than smaller providers. The same assessment shows an almost $5-an-hour difference between average direct care wages for private providers and the highest-paid private provider aides.

Generally, across-the-board percentage increases tend to perpetuate any existing wage gaps.

Cause

There is no one established pay scale for direct care workers providing residential services to DMR clients because staff work for many different employers - one public, the rest private -- and their wages are established in a variety of ways, at varying points in time.

First, DMR direct care staff are in a job classification series - Mental Retardation Worker -- that governs mental retardation workers in a variety of settings, including CLAs. The classifications were established many years ago (updated in 1988), and the pay increases are negotiated between the state and the union when the contracts expire. The current four-year contract runs until 2005. The compensation plan tied to the contract pays a Mental Retardation Worker 1, -- at step one (entry level) -- $16.55 an hour, effective July 1, 2002.

Sixteen private providers, including the largest -- Connecticut Institute for the Blind -- are also unionized. Their workers' pay is also negotiated and established by contract; the entry-level wage for the highest paid private provider is about $13.70 an hour and increases to $14.48 after one year.

Other providers are not unionized and wages are not collectively bargained; providers pay what they are able given the contracted increases, and the employment market.

Effect

The flat percentage increases given to private providers tend to perpetuate the wage differentials.

The lower salaries among the private providers create instability in staffing, with turnover among private providers at about 22 percent compared to 6 percent among DMR direct care staff.

The bifurcated service delivery system has festered resentment among many private agencies, which maintain that they and their staffs are doing the same work as DMR employees for less pay.

Remedy

Pay equity among the many direct care staff is one remedy, but would be incredibly expensive and not realistic given the current economic environment.

The DMR assessment on wage disparity indicates the annual costs to bring just direct care workers in private CLAs to the DMR levels would be about $72 million. The annual costs to bring all private CLA direct care workers to the top-paid private provider staff would be about $31 million. (Amounts include wages and mandatory benefits.)

A special allotment of state budgeted funds dedicated to a low-wage pool has been enacted in the past. (FY 97 was the last time a low-wage pool budget allocation was implemented for DMR providers). However, this does not completely address the wage differential, and offers a somewhat temporary solution. This approach can also be costly and difficult to monitor to ensure that any allocations in fact increase low-wage workers' salaries. (To bring 51 homes that have a daily rate of less than $120 per client to a per diem of $120 would cost $1.3 million)

Further, there are no good data linking rates paid to providers and lower and higher paid workers. One intuitively believes providers with higher rates pay higher salaries, but the system does not provide data to make that determination.

RECOMMENDATION

Given the current economic environment, the committee makes no recommendation on addressing pay equity. Instead, the committee recommends that DMR establish as a management priority a longer-term solution that would begin to use the acuity and placement system to develop a prospective approach for payments to providers and what they pay in wages. The ultimate goal of such a system would be to link client need, services, and wages.

¹¹ State of the States in Developmental Disabilities: 2002 Study Summary, D. Braddock et al, February 2002.