Digest

Department of Mental Retardation:

Client Health and Safety

OVERVIEW

¬ About 1 percent of Connecticut's population, 33,500 persons, is mentally retarded. Less than half, 14,575, are DMR clients.

¬ Residential services for mentally retarded clients have evolved from institutional settings -- called training schools -- to community settings, including group homes or supporting clients in their own apartments.

¬ Slightly more than half of DMR's clients live with their families; almost half live in DMR-supported residential settings - most in Community Living Arrangements (CLAs).

¬ DMR residential services are not an entitlement; capacity does not meet demand, resulting in a waiting list. There are currently 1,665 people on the waiting list.

CLA Profile

¬ Currently, there are 771 CLAs providing residential services to 3,428 DMR clients around the state.

¬ FY 01 costs for all types of CLAs totaled almost $400 million. Private providers contracted with DMR receive about two-thirds of all CLA funding, and take care of about 80 percent of the clients. There are salary and staffing gaps between public and private homes - DMR homes have higher staffing ratios and pay higher wages.

¬ Staff turnover is higher in private homes (22 percent) than in public homes (6 percent.)

¬ CLAs provide direct care staffing when clients are at home. DMR has initiated a policy requiring all providers to screen potential employees, including criminal background checks.

¬ Staff must receive on-the-job training within 30 days of being hired, and must be retrained in most areas every two years.

¬ The average age of DMR client living in a CLA is 45, which is 11 years older than the average age of DMR clients overall. As of June 2001, the average length of stay in CLAs was 8.5 years and the median six years.

¬ A greater proportion of severely and profoundly mentally retarded clients live in CLAs than live in other settings.

Residential Program

¬ Once a referral is made for a CLA placement, a referral form and packet are sent to the potential provider.

¬ If the provider and referral client and/or guardian agree the placement is acceptable, a transition plan is developed.

¬ Once a client begins living in a CLA, an overall plan of service is developed for the client. The plan is developed and monitored by the client's Interdisciplinary Team (IDT). The plan must be reviewed at least annually with quarterly updates. Each client has a case manager to oversee the plan and ensure services to the client are appropriate.

¬ The residential program provider is largely responsible for implementing various aspects of the client's plan, including: access to medical and dental services; health and safety; behavioral issues; transportation; and community participation.

¬ There are several oversight mechanisms of the client's individual service plan, including regional program review and human rights committees.

CLA PROGRAM OVERSIGHT

¬ The two main ways CLA programs are monitored by DMR are through licensing and inspections, and contract monitoring.

¬ Private CLAs are required to have a state license to operate, which must be renewed annually. Public CLAs are "certified" using the same DMR licensing process. Ongoing licensing inspections are to occur at least once every two years.

¬ If problems are found at an inspection, DMR issues a citation report and the provider then has 15 working days to submit a plan of correction. Upon approval by DMR, corrective actions must typically be completed within 15 working days. If problems are not corrected or if deficiencies continue, DMR may place the home on a one-year inspection schedule to increase monitoring.

¬ DMR has contracts with 81 private provider agencies for CLA services. Each contract is for all services provided to DMR clients by that agency statewide. Contracts are overseen by regional contract monitors.

¬ Contracts are annual and coincide with the state's fiscal year. The vast majority of contracts are automatically renewed, unless a provider gives up a contracted service or DMR terminates a contract.

¬ Recently, DMR has begun using a new oversight tool called program integrity. The intent is to collect and examine all oversight and monitoring results for a particular provider (including DMR homes,) gauge how well it is doing, and recommend adjustments.

ABUSE AND NEGLECT

¬ Many persons with mental retardation living in CLAs are vulnerable to the actions of themselves and others, and so a system to address abuse and neglect concerns is needed.

¬ DMR requires all "incidents" involving clients to be reported, whether or not there is suspicion of abuse or neglect. Reportable incidents range from client injuries to use of restraints and medication errors.

¬ Connecticut has a multi-agency system - OPA, DCF, DMR, and DSS may be involved -- for reporting on and investigating abuse/neglect allegations involving DMR clients. DMR has two separate tracks for abuse/neglect investigations. In most cases, private providers conduct investigations in their homes, while DMR investigates allegations at DMR homes.

¬ As of 2000, DMR requires any abuse/neglect investigation involving a residential death be investigated by DMR.

¬ From FY 92-FY 01, an average of 1,147 abuse/neglect allegations were reported each year, with a substantiation rate of 35 percent. One-third of the allegations related to CLA residents.

POST-DEATH REVIEW

¬ When a DMR client dies, the agency has a number of policies and procedures in place to review client care both before and at the time of death. Some of these are required by statute, others were put in place early in 2002 by Executive Order 25. Still others DMR implemented over the years as part of department policy.

¬ Some actions that can be taken when a client dies are not within DMR's control. The Office of Chief Medical Examiner may not accept jurisdiction, and/or may decide an autopsy is not necessary. Families have the choice of requesting an autopsy, but may not wish to do so.

¬ Regional mortality reviews are always conducted if a client was living in DMR-supported setting. In many cases, there is also a state-level review by the Independent Mortality Review Board, created in 1988 and revamped through Executive Order 25 in February 2002.

¬ The main focus of the reviews is to ensure the medical and personal care given the client was appropriate and to make recommendations for improvement where applicable.

ANALYSIS OF DMR DEATHS

¬ In general, there is a higher death rate among the DMR population than in the general population.

¬ DMR clients die at an earlier age than in the general population. About 60 percent of the general population dies after age 75; less than 20 percent of DMR clients live that long. The clients in the sample of deaths LPR&IC reviewed were a medically involved group, with many serious illnesses and conditions.

¬ Connecticut's death rate for its DMR population is similar to Massachusetts and a combined-state average of eight states participating in a national quality improvement project.

¬ DMR client death rates varied by residential settings -- skilled nursing facilities had the highest rate -at 95 deaths per 1,000. The CLA death rate was 11.2 per 1,000.

¬ A higher percentage of DMR-client deaths are autopsied than among the general population.

¬ About 10 percent of all 1,654 DMR clients who died between FY 92 and FY 01 had an abuse/neglect allegations filed in the year prior to death. Only 25 percent of those related to the deaths and 44 percent of those were substantiated.

FINDINGS AND RECOMMENDATIONS

Licensing and Inspections

¬ A high percentage of CLA licensing inspections occur after the CLA licensing/certification date has expired.

¬ The licensing and inspection unit is understaffed and lacks nursing staff, an important component when dealing with a medically fragile population.

¬ Public and private CLAs are often not in compliance with the regulatory timeframes for submitting required plans of correction.

¬ There was no difference between public and private CLAs in the most common deficiencies cited during inspections.

¬ DMR does not use its full range of enforcement tools to ensure compliance with CLA licensing regulations.

Case Management

¬ There are no consistent statewide operational requirements for case mangers of CLA clients.

¬ Job expectations and caseloads vary considerably for case managers depending on the regions and whether clients are living in public or private homes.

¬ It is unclear how recently developed performance evaluation elements will be applied given the practical differences in case management responsibilities.

Human Rights Committees

¬ There are no consistent statewide guidelines as to how these committees operate or how they make decisions.

¬ In the absence of guidelines, particularly as they relate to group home settings, it is difficult to determine what forms the basis of committee decisions, especially those affecting client health and safety.

Abuse and Neglect

¬ Approach to investigating abuse/neglect of DMR clients in CLAs varies, depending largely on whether a client lives in a public or private home.

¬ Until very recently there was no consistent tracking and follow-up on recommendations resulting from abuse and neglect investigations.

¬ The Office of Protection and Advocacy has only recently begun to maintain a registry of abuse and neglect reports and actions, a statutory requirement since 1984.

¬ The current memorandum of agreement between the Office of Protection and Advocacy and the Department of Mental Retardation outlining responsibilities for abuse and neglect investigations was developed in 1992. There is a need to update the agreements to reflect changed roles and functions.

Post Death Review

¬ The post death review process does not consistently focus on factors beyond a client's medical care before death.

¬ DMR has not consistently analyzed mortality data to identify trends, issues or areas for improvement for client health and safety.

¬ Regional mortality review committees typically exceeded the 90-day time frame established by DMR policy for submission of their findings and recommendations to the Independent Mortality Review Board.

¬ DMR has addressed this issue, notifying regional mortality review committees to conduct reviews more promptly and by late 2002, regional committees were current with mortality review cases.

¬ The number of deaths classified as accidents varies substantially, depending on the documentation used.

System Coordination

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

¬ DMR's regional organization structure establishes a service delivery system close to the clients, but oversight functions are split between regional and central offices.

¬ Communication among staff who perform various oversight functions is not formal nor clearly defined.

Regulatory Enhancements

¬ There is a need to enhance regulations related to client health and safety in community living arrangements.

¬ Regulations do not adequately address the spectrum of emergencies that might occur in CLAs.

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

Residential System Management

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

¬ 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.

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

¬ DMR does not have an adequate information system to track and manage vacancies in CLAs.

¬ The absence of such a system handicaps the regional placement and contracting staff, as well as the budgeting and revenue enhancement staff at DMR central office.

¬ Long-term vacancies have a financial impact on the state because of lower Medicaid reimbursement, and hamper DMR's ability to reduce the waiting list for residential placement.

Wage Equity

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

¬ Pay equity would be incredibly expensive and not realistic given the current economic environment.

RECOMMENDATIONS

1. Licensing and Inspections. 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.

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.

2. Case Management. 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.

3. Human Rights. 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.

4. Abuse and Neglect. 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 related to 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.

5. Post Death Review. 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.

6. System Coordination. Require the regional contract managers to use the program integrity format and its review components when they conduct their mid-year and end-of-year contract performance reviews. Those components shall include:

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.

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 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 six-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.

7. Regulatory Enhancements. 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.

8. Staff Hours Worked. 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.

9. Acuity and Placement. 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.

10. Aging CLA Clients. 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.

11. Vacancy Tracking. 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.

12. Wage Equity. DMR shall 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.